It does take a village!
No amount of law and public policies can fix this issue. Not that those wouldn't help, they would and should be pursued to the extent practicable. However, the cause is the frayed social structure of our society and the individualism that our society advocates instead of collectivism. A true and sustainable solution can only come with a change in our social values and family structures.
Lucky man apparently kept his insurance. Its unclear whether the Medical Leave policy leaves your health insurance intact. Many people have to start on COBRA while loosing earnings, compounding family problems. When I had a prolonged illines I was covered by company disability after 30-days, but how many people have that. The problem of health care involves all sectors of the American economy, To bad politicians reduce it to stupid sound bites.
For early onset Alzheimer’s disease, where the victim (such as my husband) is otherwise very physically fit and strong—yet uncharacteristically combative—the costs for constant care and supervision are well over $75,000 per year. And family members are also always on call. The emotional and logistical toll is incalculable.
1
If members of the House and Senate were required to enter the market for their own health insurance they might understand the needs of those they supposedly represent.
1
Surprise, surprise. Care giving is work that has economic value. Women who taken time out of the labor force to raise children know this all too well. They have shorter earnings histories, lower retirement savings, lower social security benefits, and lower earnings once they go back to work. It doesn't take a devastating disease like cancer for unpaid labor to go unrecognized. And of course women do the lion's share of the unpaid labor in our society. Funny how it takes a man pitching in to do some caring before it makes the news.
6
My wife has had Multiple Myeloma for almost 7 years now. The white blood cell cancer causes fractures, and Barbara had 7 compression fractures of the vertebra, a fractured humerus that required partial shoulder replacement, 4 fractured ribs, and a fractured hip. I work for Southern Nuclear Company, and without the help of friends at work and church, I simply would not have made it.
But gradually, the help fades away. And a President constantly bickering about our country’s health insurance just weighs on people’s souls. I see it when we go to Emory’s Winship Cancer Center in Atlanta.
Our insurance is fantastic, but will it remain so if Trump finally gets his way and removes the rules governing pre-existing conditions and policy limitations? My policy used to have a 2 million dollar limit. It’s been unlimited since Obama Care passed.We surpassed the old limit a while back. I see the insurance bills, and the drugs keeping my wife alive cost a minimal of $ 40,000 a month.
The caretaker stuff is unbelievably hard, especially when combined with work. I am constantly tired. Thanks for the Vent.
5
My father had terminal pulmonary fibrosis and died at home on hospice but the trend for Medicare recipients is grim. Yes they paid for hospital and transport home but they paid for no custodial care which meant a 24 hour burden of caring for him bed ridden and on as high a flow of oxygen as possible for home.
Because Medicare has a lump sum payment for patients expected to die in 6 months or less. My mother had to hire sitters each night so she could sleep or she’d be up all night too. Then she and our family had to stay with him 24/7. It was horrific.
The hospice staff took it upon themselves to stop his blood thinner due to blood clot/stroke risk. They never called the doctor just stopped it. As a result he died of a massive blood clot. It was very traumatic for my father too who was screaming out in pain. When she called the hospice asking for a nurse to come they told her they couldn’t. My family went through needless trauma superimposed upon the death of our family patriarch.
Because Medicare only pays a lump sum, hospice teams have provided less and less to support the patient in home hospice andvthey dont pay for skilled nursing home either. This is a travesty for those that think Medicare covers ANY CAREGIVERS. most of the expense was not covered. Worse yet they hastened his death by stopping a medication without a doctors order.
3
Your article pointed out a huge hole in our health care system and the hole is only going to get bigger. The need for more caregivers for our aging baby boomers is impacting the already critical shortage of available caregivers for our permanently disabled and the need for temporary care like Jim faced with cancer. Families/friends may not be able to do all. Paid caregivers for disabled and elderly poor are totally underfunded by governmental programs. The law of supply and demand is alive and well and those that are well off, can private pay the high rates to hire a caregiver. Others, like my parents end up in higher cost Medicaid funded nursing homes after their savings disappear. People with autism, developmental or other disabilities may receive some minimum wage funding from governmental programs but finding caregivers to work at minimum wage to care for people with complex medical, behavioral and mental health issues is becoming increasingly impossible. Fast food staff dog sitters and teenage baby sitters make more money than caregivers funded by the government. We must overhaul NOW our health care system and reduce the amount of health care dollars going to the for profit health insurance companies and instead use those health care dollars for direct patient care. Some type of Medicare For All is sorely needed and could address the caregiver shortage crisis as well.
2
And you haven't even scratched the surface of what it's like to take care of a parent or spouse with dementia...
5
I have to echo the previous comment by Lisa Wesel: Jim's situation is tough, and I wish him the best. But the challenges involved in lifelong caregiving of sons and daughters who have disabilities (along with the complexity of navigating services and finding supports) are huge. Even with Medicaid and Medicare, trying to ensure healthcare needs are met takes significant time, effort and expense. My adult son with intellectual and other disabilities requires a host of medical specialties, and we feel lucky to be close enough to Boston that we can take advantage of that concentration of expertise. But all the trips to Massachusets can get expensive. And, of course, medical appointments are in addition to the day to day responsibilities faced by families to meet basic living needs of sons and daughters, that (unlike in my son's case) often include feeding, toileting, bathing, etc.--in addition to trying to access any social or community activities that might be available.
Supporting caregivers of all kinds doing the difficult but essential work of caring for their loved ones deserves much more attention.
2
What I hope is a temporary situation for Jim Fleischer and his family is the lifelong existence of people with disabilities and their loved ones. I am the mother of an adult child with Dup15q (a rare genetic disorder that causes intellectual disabilities and epilepsy) who still lives with us and probably will for decades to come. I quit a high-paying, well-insured, 401K-matching job as a journalist 20 years ago to care for her and — even more time-consuming and stressful — to advocate for her. Fleischer is the exception: Most people have to claw for every ounce of healthcare they can glean from our unforgiving, profit-based system, and that can be a full-time job. Then there’s the actual caregiving. If the author thinks the caregivers of cancer sufferers are left out of the healthcare conversation, try finding the families of people with disabilities. We’re invisible.
8
I live alone and have no close friends I can count on if I am sick. No dependents. I have Medicare and very considerable savings. And a dog. If I have a very serious medical condition, I will either have to hire caregiver assistance when I am at my weakest and most vulnerable, or refuse care and take the easy way out and die, preferably at home. I have read that refusing all nourishment and water results in death in less than 2 weeks. That seems a way of inconveniencing the fewest number of people while giving me a bit of time to get my affairs in order.
9
Your article reached home for me on so many levels, I am an ovarian cancer survivor & had recent surgery for a liver abscess; my parents father-lung ca/lymphoma, my mother breast /pancreatic ca. After my hysterectomy & prior to FMLA, I had to rely on saved vacation time; it was not enough paid time off from work. At the time, I had a saint for a manager and I was able to rest in the on call room if I was too sick to work. I recall being called by my mother when my father had to receive TPN & her crying that she was not a nurse so could not add insulin to his TPN, I had to travel from CT to DE with my infant daughter to do this for him. By telephone my manager was able to get him admitted to my hospital's rehab unit. I had to transport him to CT, the ambulance cost was prohibitive. After his final chemo treatment he was septic; did not survive. My mother relocated to live with us. I had to buy a bigger house to accommodate all of us. The week after she moved in with me she was diagnosed with breast cancer, then several years later she was dx'd with Pancreatic Cancer. There was enormous toll on myself and my young daughter to help with her transport to physician appointments and treatments. I became very ill this fall. I spent 30 days in the hospital, in all this episode cost over $300,000.00. I was so debilitated I could not cross the threshold into my home. I fell on the concrete porch. My insurance would cover a rehab stay despite living alone.
6
I am so very sorry all that you’ve had to deal with and wish you the very best. Wishes don’t cut it though when it comes to policy. We need rationale healthcare that addresses real life issues.
4
Mr. Carroll, I am glad that your friend is doing well and has such great support. I just imagine families without means, like hourly wage earners who don't have money saved because there is barely enough money to live on from day to day. I image families without connections in the medical communities who are confused by treatment options and afraid of what is next. I imagine families who take their loved ones home from chemo using public transit because they cannot afford taxis. You are so very right. We have to address the needs of the caretakers in acute and chronic situations.
8
I do not wish anyone the suffering associated with illness, let alone the unnecessary suffering caused by an inadequate (non-existent) safety net.
It is for that reason that I think politicians should earn no more than the median income. When they have to experience the suffering that they are causing others, perhaps they will behave like human beings who care.
4
The number of comments pouring in show that you have touched a nerve. Chronic illness and eldercare exacerbates this issue - family can be burdened with years of elder care. The toll is devastating .
5
Odds of an American getting cancer in their lifetime in 1900: 1 in 22.
Odds today: 40%. The media, medical industry, and government refuse to acknowledge the fact that we are living in a cancer epidemic in the USA that easily rivals the Bubonic Plague days in Europe.
And we know what's causing it - synthetic chemicals in America's air, water, food, building materials, clothing, and medications. The odds of contracting many of the common cancers like breast, prostate, colon, thyroid, etc. are often 10 or 20 times higher in the USA that other countries around the world.
10
@Bob
Just to be fair, you need to acknowledge that most people died of other causes before they could get cancer in 1900.
And I do not think that the chances of getting beat, prostate, colon or thyroid cancer are 10x higher in the US than other western countries. Nevertheless, your point about the environment is likely correct, in my opinion.
6
@Bob You know what is the best predictor of cancer: living a long life. If we eradicated all other causes of death, the cancer rate would reach 100%.
And no, cancer rates in the US are not 10-20x those in other developed countries.
1
Severe chronic or acute illnesses strike virtually everyone. Of course, people with money, caregivers and economic resources fare better than those who don't. But, as the op-ed, and the comments below indicate, this is a harrowing journey for virtually all. So, why are so many Americans willing to back politicians who want to take away even the most modest safety net, and who want sick people to take care of themselves or die--quietly and without complaints? Sure, it will cost money, vast quantities of it, to fix this mess. But, aren't the costs worth it? We need a strong dose of compassion in this country, along with the medical prescriptions.
7
What do you think should happen when someone gets very ill? Yeah, it's terrible, and a burden on the whole family, but who should take care of this person if not his family? Illness strikes rich and poor alike, connected and not. What do you think should happen???
Maybe your friend feels guilty that his family has to rally round -- and miss work! -- to care for him. But would he, or anyone, prefer strangers to do it? Poorly paid strangers? Is that the plan? Maybe his family has drawn closer together because of this, and feel a sense of purpose in caring for a loved family member.
I can't even imagine what system you envision, Mr. Carroll, to plug this "hole in our system." Is everything bad that happens also an injustice that needs to be addressed? That leads me to think you've lived your life in a cushy bubble.
1
@Trilby And you must live in a bubble, too, if you think that everyone has a family at all, much less one that can devote substantial time and energy and lost income to take care of a family member.
24
@Trilby - In my previous city, the only family an elderly gentleman with dementia had was his developmentally disabled grandson, was around 20 at the time. The grandson did everything he knew how to do, but when his grandfather died because of septic bedsores, the young man was charged with murder.
Anyone who thinks all or even most American families have someone who's available to care for someone very ill, let alone capable of doing it, doesn't live in the real world.
10
I am very thankful that I was able to spend more time with my parents as they got older and needed help with doctors visits or other types of care. My mother had cancer and I went to visit often and eventually took unpaid time from work.
This was valuable time and I learned a lot about them and myself during these times.
I viewed it as "love in action".
7
Frightening article. I am old and healthy and don't have available caregivers. My daughter died of slow but progressive cancer, after perhaps five years, with two small children. She was well off, and had a large support community, but it nearly bankrupted their household. One of the problems is the cost of everything. The other is the lack of care time and care facilities, to look after a person after treatments, for a day or two. It is societal dysfunction that gives us cures but make getting cured so impossibly difficult.
7
Next time you read about better outcomes at “centers of excellence”, remember this anecdote. Without all the resources this friend had available, how well would he had done? It is a factor frequently ignored when these specialized hospitals brag about their excellent results. If you start out with motivated, well-insured, well-supported patients, the results are going to be statistically better than the hospital down the road where the single parent, employed in two minimum wage jobs (plus a gig or two to make ends meet), un-sophisticated patient goes to just to get to the nearest healthcare provider. When you factor in the limited capacity of the COEs to provide care for common problems like breast, colon, and prostate cancer, or heart disease, you understand that the whole concept is mostly a marketing trick, one with the added advantage of recruiting even more patients likely to do better than average.
8
@Chuckles
"Without all the resources this friend had available, how well would he had done?"
Yes. Someone has driven you back and forth from chemo, made your lunch, changed your sheets and purchased those specific hard candies you need to keep your mouth moist. Someone calls the doctor with your questions because when you go home from chemo, or radiation, the doctor is done with you, and doesn't advise, beyond broad generalities, what's to be expected or what you can do to give yourself the best chance of recovery.
Someone reviews the insurance bills, and files your income taxes, and makes sure your property taxes are paid on time because you are too sick to do so. Someone feeds your cat, and changes the litter, because it is dangerous, in your immune-compromised state, for you to do so.
And if you don't have that someone. . . .
19
My brother was diagnosed with stage four pancreatic cancer that spread to his liver in January. He is on permanent disability, which nets him about $1300 a month after he pays for his COBRA. He will never work again as he will not survive this illness. He is the fourth of six of us. Our parents are gone. We have a large network of friends and we all take turns helping Tom. He has chemo every other week. He's down for the count after chemo. He can't eat very much and has a ton of meds to take. We take off from work to help him or we leave work early or we go to help him after work. We will do whatever he needs as long as he is with us. It is an emotional, physical, mental and financial challenge. While our jobs are supportive, we have to take our PTO.
There are no resources that don't cost a lot of money to help. We are lucky we have enough friends and family to help him.
This country continues to let the middle class down. Especially those like Tom, who are sick at no fault of their own, and don't have the money to get the help they need.
If they cancel ACA, will he then have a lifetime limit on coverage and end up going bankrupt for chemo? Or worse, not have it at all cause we can't afford it?
Our congress does nothing to help us. They are clueless. We the people need to take care of ourselves - our government abandoned us years ago.
We must keep on fighting and never give up hope. Tom has hope so I have hope. That's all we can do!
16
@Kathy H. Well, particularly one party let us down. Its members now want to strip Americans of the only paltry insurance we have. Hopefully, people won't forget this when they vote next year.
16
This article doesn't take into account the physical and emotional toll on caregivers. These costs are as debilitating as the financial ones.
Not everyone is blessed with a community of relatives and friends willing and able to take time off to assist with caregiving. It most often falls to the spouse. And she (and it most often she) is left emotionally alone and isolated. People have their own busy lives and responsibilities and somehow, if they haven't experienced illness, they don't get the physical toll and emotional exhaustion that caregiving brings.
Respite programs are few and far between and often caregivers aren't even aware of the resources that do exist.
11
Imagine that you are someone with a lifelong serious illness. This is your daily reality not just a three month ordeal.
12
Carroll shines a bright light on a critical issue that most definitely merits more attention and subsequent policy making.
But it was difficult the entire time I was reading his article to not shout back at him ... "Well duh."
That he seems somewhat surprised at the significant burden caregivers assume for people experiencing a variety of maladies is a privilege hundreds of thousands of people have not been gifted for a very, very long time.
7
32 years ago when I was diagnosed with ovarian cancer, I was a teacher. My husband was able to take me to the doctor's appointments, his work notebooks in tow. He had just started a new job and they were generous and understanding enough to give him the time needed to take me to surgeries and chemo. My doctors scheduled chemo sessions starting on Friday evenings through the weekend, so I was able to have friends and family by my side. During the week, I stayed home by myself, while my husband carried on at his new job, coming home for lunch to check up on me. I had accumulated sick days at work, so I was being paid. When I ran out of sick days (as I was out 6 months total), the Board of Education generously voted to give me those extra days. Upon return to full time teaching, the Board of Education had me shadowed for two months by a substitute teacher to make sure I could make it through the day. At the time, and now years later, I realized I was very very lucky to have all of the resources and support I needed.
12
You are fortunate you had that experience with the BoE. I’m helping care for a gym teacher with stage 4 ca, and her coverage from the board wasn’t nearly as good.
As a human resource professional I saw that my helping would allow her 21 year old daughter to work as a new graduate. It will make a long term difference to the daughters life.
There is a chicken and egg phenomenon with illness - being sick makes you poor and being poor makes you sick. Which came first...
7
But but but..... if America provided socialized medical care that includes in-home care and personalized medical navigators, how will CEOs ever buy yachts for their dogs?
Think of the puppies!
11
This is just another example of why so many of us want the right to end our lives when the living becomes just too burdensome.
14
In 2014, my then 92 year old mother was diagnosed with rectal cancer. I was her primary medical contact and health care proxy. She was also beginning to battle vascular dementia. Her health was too fragile to withstand surgery, so we did 6 weeks of radiation therapy - 5 days a week - to help her regain some dignity. It required that I pick her up at her apartment at the continuing care community every morning (Monday-Friday) driver her to the hospital. Sit while she had radiation. Drive her home, head to work. Did I mention I'm self-employed? And I have two daughters, who at the time were 11 and 15? Every day. For six weeks. Plus all the doctors appointments - for that - for her strokes, her heart condition, for everything else.
Until her death in 2016, from the time my father died in 2008, I was the point person. I cannot estimate how much money it cost me. How many hours with my own children. The system sucks. If I had a 9-5 job, I would have been fired.
10
@knitter215 Until you have the experience, most people don't comprehend the all-encompassing nature of caring for someone with your mom's health conditions.
Your mom was more than lucky that you were willing to sacrifice your time, income and put your own family responsibilities below her needs.
3
My husband had a severe stroke 16 months ago. We had adequate insurance from his employer, but the other expenses--adapting the house, keeping him in the nursing home after Medicare wanted to throw him out when he was still incontinent, disoriented and incapable of sitting up, paying for wheelchair vans, etc,. etc.--has eaten our savings, our nest egg, my 401K, and soon we will have to sell the house. We cannot possibly afford an aide. I have been on nursing and psychiatric duty this whole time, without help, without relief. His adult children are AWOL, his siblings elderly or clueless. The only question is which of us dies first and whether we do it in a homeless shelter or in our car. And in the course of this odyssey I have met couples and families and individuals who are far, far, worse off, medically and financially. Losers all, as our president would say.
28
I had to spend a year being a 24-hour caretaker to my 52-year-old husband, terminally ill with glioblastoma and physically incapacitated from the initial diagnosis until he died. I also had to keep my full-time job and manage and support my three children through their dad's illness and death. I had the extraordinary compassion of an employer who turned the other way and let me do whatever I needed to do, as well as a community of beloved friends and neighbors who kept us fed and supported. We were lucky. We had health insurance, employers who supported us, and when he died, my husband left us life insurance. But I am terrified of what happens to me when I get sick. My dive into caregiving (and it was only a year with a terminal diagnosis) was exhausting, eye-opening and frightening.
16
One element missed here is navigating the health insurance (parasitic) industry itself! We have great insurance in terms of flexibility (even in foreign countries) and coverage, but with any new treatment there are claims denied, long lag times, and lots and lots of phone calls and starting the story over each time. Often the patient can't navigate this either because they feel too poorly or because it is too emotionally draining.
We need more than policies. We need a more humane system.
22
I live alone and have an autoimmune disease that is slowly killing me. I’m in my 50s. I have no family. My friends all work except one who is also sick. I can no longer drive. I have an agency that helps me food shop if I don’t do home delivery. They also take me to my doctors but the state I live in will be doing away with that due to costs. I’m on disability. My income is $100,000 less than what I used to earn. Any money I had is gone. Where I live my maintenance and mortgage take up half of my income.
Who will take care of me when I get to a point that I need help! Assisted living? $6,000 a month in the NY area. I don’t want to move because my doctors are here. When it’s my time to go I hope fast.
18
I survived a couple of cancers, but my experience was nothing like some of the heart wrenching scenarios recounted here. For me and many others, I realize it’s not if but when. I also know what I need to do and how I can fight.
I know I am fortunate, but the one thing I took away was to learn to enjoy the moments I have now to the fullest. I hope more people can fight and survive in order to continue experiencing the human joys that life on this planet has to offer.
7
Some people are lucky enough to have people to take care of them. I went through breast cancer surgery (drove myself to and from several surgeries), drove myself to and from each chemo and radiation session, and was hospitalized for every possible side effect, including sepsis-and drove myself home from every hospitalization. What do I have to show for it now? I lost my home, my job, my friends and family. I now get to wait to die alone while living in my car. Appreciate those who are there to help you. The ones I never had.
19
@MDA
Oh my good heaven, your story of loss is heartbreaking.
8
Omg. How did you not notice this before? Don't you have a chronic condition? Seriously this is news to you?
I don't want to think what caring for my father in his final year of life cost me, in terms of dollars, hours, or career advancement. I'm an only grandchild from a family with complicated divorce & remarriage situations, and my husband has a single disabled brother. I don't want to think what caring for all of the people we'll ultimately be responsible for will cost us over the years. With shrinking families this is going to get worse. What do people with no family do? The old system was wives & daughters did it for free (along with all the childrearing, cooking, cleaning, etc.). That was dramatically unfair, and it is good that that system is no longer in place--BUT now there is NO system. And there should be.
Policymakers ought to come up with something. And it ought to involve paying and respecting people for their labor... which might need to involve raising taxes. Uh oh.
30
@A Professor, yes, while working full-time, I've spent years caring for my mom in Ohio, my B-in-L and my husband (NYC) through years of health issues. Like you, I have many stories I could tell.
It's why I so fully support the NY Health Act (NYHCampaign.org). Single-payer for NYS that has been vetted, discussed, voted on, and improved for years.
This year's bill includes Long Term Care (LTC) — so that people who need homecare, get it as part of a doctor's prescription... yet it costs less than now.
This single-payer healthcare (NYHA) saves enough money from eliminating wasted administrative services and reducing overpriced drugs to cover every resident in NYS, with all essential care (better than any currently existing policy), with no out-of-pocket, AND including LTC, for LESS than we in NYS pay now.
Multiple respected analyses have scored the bill — most recent the Rand Corp. Rand also said it would spur NYS's economy and create 200,000 new jobs, while controlling future costs. And physicians and hospitals that serve the poor and middle-class would have reimbursements increased, and have their operating costs reduced, the amount of time they can spend on patients increased.
Check out NYHCampaign.org. We need to get at least 3 more NY Senators (who campaigned to support this) on board. There are 29 now sponsoring it (of 32 needed). Big money (pharma, insurance) is on full attack. Most doctors support it. Most voters do. Lobby your reps!
10
Mental illness caregiving is never ending. Especially Personality Disorder, it can be exhausting and destructive.
15
I am a physician, work part time, and have a child with autism, significant developmental delays, and a chronic medical illness that required an unexpected week long hospital stay this winter. Caregiving as a parent of a special needs child is exhausting and never ends. I work 100 hours fewer than the annual minimum to qualify for FMLA, so I burn through vacation time (we don’t get sick time at my job) if my child is hospitalized. I can’t work more hours because of my family responsibilities and because I need a break from my demanding job, too. I spend many hours on the phone with insurance, billing, fixing billing errors, getting medicine refills and errors fixed, just like any other patient. I’m entering the life phase when my/my husband’s parents are aging and will be facing their own caregiving needs. It’s profoundly difficult and I feel for everyone who posted comments about their experiences.
18
@Cath ...and on top of all this as a physician you are expected to do a job that is emotionally as well as physically exhausting and to do it without showing the toll it takes on you.
6
I cannot imagine that we can ever afford to proved this kind of home health care. Our tax rates would be so high that most would have to sell their house (but who will buy it?), remove their children from private or parochial schools, or from their university. We can't go from someone being in the 20% tax bracket to being in one that might well be 75%. The economic repercussions of this would be catastrophic. And there are not enough "super-rich" people to tax to pay for this.
People have always had to rely on the help of family members. Unfortunately, today, nearly all these people work full-time. What is needed is some form of commercially available "catastrophic" insurance that will pay for home help care for a period of time. They won't be cheap, but they will be far less expensive than unpaid leave or losing a job.
We cannot expect the government to do everything for us. It's not fiscally sustainable. Just ask the European countries who have been trying this now for many decades.
3
@India
Wait, do you mean those European countries that, nearly across the board, have higher levels of overall happiness and healthier residents, and *do not* have tens of thousands of residents in bankruptcy court every year due to overwhelming healthcare costs?
You want me to ask *those* Europeans?
26
I watched my best friend and her husband deal with this for 2.5 years after he was diagnosed with brain cancer. Fortunately, they had a lot money, so they could afford a PCA 5 days/week (7 days/week for the last few months of his life), and an OT/PT to help him maintain mobility as long as possible. Those are true luxuries that most cannot afford.
My friend had to keep working to preserve insurance coverage. She used up her FMLA, twice, between multiple surgies and chemo/radiation courses. Two years in, she was suffering from severe depression herself and eventually had to quit working. And yet, they were undeniably lucky, given the situation.
We often talked about "What if you don't have a lot of money?". And the answer, as far as we could come up with is: You die. Much faster and under much more difficult circumstances.
19
If this happened to me, or a member of my family, it would be a death sentence.
12
@lastkevin and there are many like you and I. It keeps me up nights.
3
@Don Siracusa
Not sleeping is bad for your health.
1
As the parent of a pediatric cancer survivor, I've lived this. My family lived this. Our friends lived this. We were lucky. We had good insurance and flexible schedules. But we were in the trenches with some families that weren't lucky. Here's the really tough part - imagine the families that have extremely long term care-taking needs. I don't know the answer. I don't know if there is an answer.
8
And then there are the Americans who have no caregivers at all. No one to call on when one of us gets into trouble.
When I had biopsies of my breast and underarm and, at the same time, a venous port implanted, I was told that I shouldn't drive home (when I was released from the hospital the next morning.) Since I have no family within 200 miles of me, and no friends any closer, I drove myself home. During five months of chemotherapy, I took care of myself.
Luckily, all turned out well. But what about the ill or the injured who have no one and aren't as tough (or as obstinate) as I am ?
30
Real life happens. We may become sick ourselves, or our loved ones become sick. It is a natural progression of life. If you have ever loved, you will become a caretaker. The financial burden is huge. The reality of illness and aging is that it is a part of the human experience. This dilemma has always been. In the past, many Americans died in hospitals. Today, illnesses have been transformed into chronic illnesses, even cancer. We are no longer hospitalized or institutionalized. Illness is living out in the community. The responsibility has shifted back to friends and family. So where do we go from here? The tragedy facing all of us is the excruciating balance of caring for our loved ones while remaining financially afloat. It’s a cruel dilemma and part of a universal experience. This issue goes back to our souls. Are we merely producers or are we liberators? Each of us has to make this decision in our work lives by how we treat our fellow employees facing these challenges and how we treat ourselves. Giving a voice to the sick and caretakers is just the beginning. How employers incorporate the human experience of helping and healing into the workplace will determine the greatness of the organization or the demise of it.
26
If only US could untie work and healthcare insurance and provide a paid sick leave that induceds family members taking care. That could help quite a lot. But his is a crazy socialist/European idea.
9
We have lost precious time not addressing the failure of our healthcare system. There are 58 countries in the world who have some form of universal healthcare. There are 52 countries who have a better longevity rank than the U.S.
The benefits of progressive taxation in symbiosis with our government to pay the cost of healthcare, to include all of us will show in each generation not only a healthier population but one where productivity is higher, with the focus on education, job training and work will bring economic gains.
Other countries have figured this out. Our lack of understanding the importance of a healthy society is shameful.
15
Y'all are actually the lucky ones-meet my "Christian" family: 3 brothers, one sister, and a 94 year old mother who still drives to church EVERY morning. All of them financially well off, and all retired.
I had open heart surgery (CABG) 3 years ago. Not one of them even called. Lucky for me, I had the VNA (wonderful, but only 3 hours/week), and friends. I was alone 90% of the time. At first I thought for sure I would just die, and that would be it. After a few weeks, with recovery well underway, I gained a feeling of superiority-I actually could recover on my own, and I did. I felt impowered-end of story.
13
@Marcus
Congratulations on surviving! You certainly have strength of character to have gone through this all alone. Be well.
8
Please also remember that if you have health care through your employer and can no longer work, you no longer have health insurance. You could pay COBRA, but with no income that is probably a non-starter.
If your spouse, child or parents have to take time off beyond the provisions of the FMLA, they may lose their jobs (and health insurance).
The cost of severe or chronic illness is devastating in our economic system.
31
That families have serious difficulties providing for the care of their children, parents, or spouses is not a problem of the health care system. It's much more the fault of the way our lives are organized economically.
Once upon a time, a parent or spouse (the wife, usually) was available to care for sick or injured children and spouse (the husband, usually).
Women didn't go to work because the wanted to avoid sick people. They went to work to make ends meet, or for the family to enjoy a better standard of living.
Work for the adults and education (another sort of work) for the children consumes all the time there is, except, maybe, for a short margin at the beginning and end of the day.
Your employer is the one at fault: the wages they pay, the amount of work they demand, the devotion to their bottom line they expect, their unwillingness to give their employees sufficient time off to meet the human needs of their employees, their inflexible schedules--all that is the problem.
The case at hand had plenty of resources. Imagine the crunch felt by families who can just barely hold their economic lives together.
12
@Michael
“Women didn’t go to work because they wanted to avoid sick people.”
It’s hard to take your post seriously after seeing this little nugget.
1
This article is so on-point. Caregiving is tougher challenge when it's a senior with Babyboomers. Babyboomers are crossing age 65 at rate of 10,000 daily for 19 years in USA and ratio of possible family caregivers is rapidly declining due to longevity, less number of kids, families being separated in geography and frankly apathy. Also, it can cost over $200,000 per year to have a around the clock professional caregiver. With my own personal and professional experiences I have written a fiction called: "Experience: Caregiver's Journey", to talk about these challenges. Many have found it helpful as a guide for planning their later years in life.
5
When will we finally wake up to the fact that the most important infrastructure in our society and our economy that matters is our health and that it's maintenance should be our first priority?
12
I'm glad you turned your talents to writing about the upshot of out health "system" insanity: how much real pain it causes people who have the ill luck to be really sick. And how the medical piece of the care may be at the core, but is almost useless without supports which are not offered.
I think also that your admission that you really didn't have an 'idea of how onerous this is, how overwhelming, is admirable, But it is also why so many oppose expanding certain types of care: they don't see what people go through.
And then imagine: you don;t have insurance at all. You don't have the funds to go to a medical center with the expertise you really need. maybe you are told, as noted in a recent story, that if you cannot come up with the money to guarantee you can afford ongoing medications, you will not be given a transplant you've waited for.
And there is the assumption that there is a caretaker you can pull out of family, friend or pay for: even for lesser issues, people are discharged when they cannot care for themselves, and have no supports.
As hospital and rehab stays have been curtailed - this leaves many in possible dangerous situations. There should be some home care support options, and maybe even a residential step-down from rehab for those who need it.
12
Your health is everything, yet around half of all Americans willingly subject themselves to years of ill health by way of a sedentary lifestyle and lousy eating. Go figure.
1
@Teal What exactly is the point of your comment? Many people with extremely healthy lifestyles come down with cancer, heart disease and other illnesses. As for those who don't have healthy lifestyles, I certainly hope you aren't implying that they somehow deserve what they get. Have some compassion and decency.
25
@Teal - As the saying goes, "eat right, exercise, die anyway." No matter how healthy the life style, no one here gets out alive.
22
@Teal
A lot of doctors would agree. It's very hard to care about people's health when they themselves aren't willing to take steps to protect it. Looking at my very healthy mother, good genes, no smoking etc etc, all I can see that brings her down is the sedentary life style. Then there is some bad luck- lyme disease, for one. Loss of eyesight because of undiagnosed lyme disease until it was quite late, over 20 years ago. It's never just one thing.
4
This article is more proof that the medical-industrial complex is for profit and profit only, not for health.
There's far more to cancer treatment than the barbaric cut, burn, poison, relieve the ill person of their assets. The pressure to rush to surgery is rarely an emergency. Chris Wark's Chris Beat Cancer book is worth checking out. I live near the City of Hope and was told there are plenty of cures but the system needs sick people for profit.
We need a system like France's, not tied to employment and to get the entire sickcare industry out of our government (purchasing officials).. And we need to fold in all forms and options of individualized treatment
12
I am struck by how many times someone’s job is mentioned in this article about dealing with a health crisis.
In America our employment is at the core of our universe in achieving the American dream. Once we obtain employment we incur enormous debt to fulfill all the aspects of that dream by having a house, cars, expensive vacations, and health insurance.
This assemblage of ingredients for our life style becomes a cage like prison that has to be pampered, supported, and maintained if we are to achieve the American success that is held out to young Americans from their youth and onward.
How quickly we buy into someone else’s philosophy of life with little thought to alternative life styles and values!
Does our American dream turn out to be a rewarding celebration of life or does it often just end up as an economic trap from which we cannot escape?
14
@Michael Kittle If you can't put food on the table, clothes on your back, and make payments on your housing and utilities you're not going to be celebrating life all that comfortably, so what does your philosophizing have to do with the demands on caretakers who have a hard time making ends meet?
10
@Avarren Avarren I believe you are missing Kittle's point here. He is asking a question about values. Why do we make work the central point of our lives? Why do we need so much stuff? Why don't we collectively decide to make life more important than work? The collective has agreed to the terms of our enslavement. They are not a given. They aren't universal law. Kittle is asking if we can't work together to imagine a better way. I'm with him on that. We imagined a 40 hour work week. We imagined an end to child labor. Can we imagine a 30 hour work week, universal health care, an end to war? I think we can. I think we must.
8
We Americans live in a country where health care is treated like a privilege rather than a right.
Coverage for health care is often a rare commodity depending on how fortunate you are in your policy if you have one at all.
Health care in some countries like France is a single payer system treated as a right for all regardless of your work status or your economic status in life.
When surgery is necessary an entire team of health care workers jump into action to see the patient through everything without gaps in service.
If only the second amendment to our constitution guaranteed health care as a right for every citizen instead of a right to own a gun that may be used to destroy the health of unlucky victims!
19
Thank you for this article, and I'm happy to read that Jim is doing well.
I wanted to address a related issue: when there is no support team, or just a team of one or two. When almost all care for someone falls on just one person, it's really hard. That person needs to be extremely flexible and learn to manage physical and mental stress and a whole panoply of emotions, including resentment and frustration. Well-meaning people remind us to care for ourselves, which I agree is very important, but when? Sometimes the person needing care won't ask for what they really need because they know their caregiver is already strained. That can lead to complications that cost even more suffering and time. Sometimes they won't allow anyone else to help because they're private, embarrassed, or not always rational anymore (but lucid enough to tell Adult Protective Service social workers to go away). Sometimes they refuse to see a doctor and just lie at home suffering. My experiences as the caregiver for several elderly family over the years have taught me how important a very wide circle of close friends will be in the future - but even more important, I understand how the quality of my life has been affected by all the time spent in this role - I'm missing out on all the relationships that make life worth living and not forming the close ties that I will probably need myself. In short: get as healthy as you can, be as good a friend as you can be and remember to breathe.
17
@kathy
I really feel for you. Your work caring for others has to be its own reward. It's so much a part of our humanity, our very identity as humans, to do this for each other, throughout history. I've only taken care of my mother, for months at a time, and even doing that, I know very much what you mean. My own healthcare was neglected, and my own work, and social life too. It cannot be rationalized away- to care for others means to be able to spend less time and resources with other things. I have yet to get to the point where I have to seriously address it in terms of making changes. But I do go to a very good support group for caregivers at my local senior center, once a month, and it means a lot to me to be able to hear others and share my experiences. There is also a lot of benefit in such a group because you get a lot of tips on what services are available in your area. I hope you can find a group like this.
2
This article hit home for me. It's very hard physically, emotionally and financially being a caregiver. My husband and I took care of my mom who had Alzheimer's, for 5 years and 3 months, until she passed away. She also had 4 bouts of cancer before that, which also took its toll on all of us, but not as much as Alzheimer's did. We dealt with everything that you mentioned, such as working fewer hours, and juggling our schedules so that someone was always home with her. (Assisted Living just didn't work.) I even wrote a book about our travails: My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Being a caregiver for an ill person is not usually in our collective psyche, until it hits home.
9
I just lost my brother Peter to pancreatic cancer. Although he was a year older than me, he was autistic and needed constant care. The last few months have been pure hell for me and my family. I've had to miss many days of work taking him into the emergency room or the hospital. On top of all of this my almost 90 year mom fell and broke her leg. So we lost a caregiver and gained another patient. People should be able to get paid to take care of their families in a crisis like this. Going to work was torture because I had to constantly try to find someone to cover at home just so I can do my job. Dealing with insurance was a nightmare, the hospital constantly wanted to do meeting about his care but nothing materialized. Spoke to many social workers but nothing. Hours spent on the phone just trying to get us help. The medical system in the U.S. has become one big joke!
27
Jim is fortunate that he has a support group that can help him through a very difficult time. Not all of us who have survived cancer were so lucky. Unless you have the money to bring help into your home, your public assistance in most states is minimal, and in some nonexistent. At a time when the population in America is aging, depending upon government assistance is at best uncertain. Social Security, Medicare and Medicade which Mr. Trump promised would be “protected” is under review and cuts are anticipated. Medicare Advantage which offers a wide range of benefits depending upon the plan is fine for routine matters, but for more serious illnesses requires prior approval by the insurance company. Long term care insurance is a up to the individual, and can be another expense. The bottom line is that it is up to the individual to prepare for old age and the decline in health. This situation is not going to get better anytime soon.
9
Every time I read an article like this, I recall that Americans, in general, don’t save money. Instead, they spend, spend, and spend. Disney-world, SUVs, sport events, restaurants, media rooms, loans here, loans there, etc., etc. Until the American mentality changes (it will never happen), people won’t have the financial resources when needed and they will keep blaming the system.
6
@PaulN I don't think you can boil this down to simply "save more." When my elderly mother fractured her femur and was not able to bear weight on her leg for three months, finding the care needed was the hard part. She had the money but the facilities that were able to care for her (at $360/day out of pocket), were almost non existent. And this was in a heavily populated area--I cannot imagine how she would have received care if she was in a rural area.
24
@PaulN
Yes, Americans do need to save more, and many do need to take greater responsibility for their future needs rather than their present *wants.* But many work very hard and still cannot scrape by, let alone cope with such disaster. I have read of cases in which couples scrimped and saved for decades, only to have their savings wiped out by an unforeseen medical event and becoming homeless as a result.
Perhaps you do not realize how costly the experience of cancer care is. First, it is highly unlikely except the VERY-HIGHEST-paid could ever *save enough* to self-fund cancer treatments and care.
In addition, it is often sheer misfortune, i.e., through no *fault* of your own, that you fall into a dire and expensive health *hole.*
You should be so lucky to never need the care that the author's friend required.
29
@PaulN Have you ever cared for seriously ill family member long-term or suffer from such an illness yourself? If you haven't, then you might be shocked how much insurance doesn't cover and the cost of even low-quality and mediocre care at thousands of dollars per month. Besides practicing medicine, I use to research quality of long-term care.
No amount of savings is enough unless you are a multi-millionaire/ billionaire and most people, despite working hard, living frugally, etc. simply are not able to save that amount of $$ with their salaries. One episode of cancer can cost over a million bucks for treatment, not to mention follow-up care and the chance of recurrence.
You're correct that some Americans do not save or save enough and spend too much but research on saving in the US also shows most Americans simply have very little to save after paying for the essentials such as their rent, food, health insurance, children's college fund, etc. As a saver myself, I use to think like you did but looked into the matter out of curiosity. Look at the data instead of making assumptions.
25
I would never do this to my loved ones. Please read Virgina Woolf last note to her spouse. she did not want to ruin his life .
We all get one life and I love my family too much to ever put them through long term care giving. I know what its like as I have been managing my very elderly mother for over twenty years.
No, love to me means not doing this, check out early . Do not ruin the lives of those you love.
19
@Chelsea
Agreed. I cannot comprehend how people do this their spouse or children. Live every day to the fullest and realize that health and life are transient. It's one thing to let your family pull you through a serious illness that can be resolved. It's quite another to expect them to turn their lives upside down to care for you when your mind or body are irrevocably failing.
9
@Chelsea
I'm 81, and have my plans for suicide pretty well thought out. I'm weeding out the fluff from my possessions, completing my inventory book, making sure that the adult relatives I care about know that they may not be notified of my death (so they should check in with me, periodically, just in case.)
All that's left to do is work out the best way to go.
4
I love how this entire article fails to make the connection to capitalism's entire raison d'etre: profit. You just wrote an entire article about unpaid caregiving...how it costs a fortune at the hospital and nothing at home. That's how profit works: we aren't paid the value of our labor.
21
@Lisa
Correct! How dare we implicate the profit-driven system that scr-ws everyone except the wealthiest among us.
2
The so-called American "health care" system has been chipped away at for years. It's more like an assault. The people in general are a determinant to so-called health care companies. For some time now the United States life expectancy has been going down, while other countries have been going up. What political group hammers away at coverage for people and who allow unsubstantiated costs to escalate without question? The same grouping fight all abortion right with nothing short of zeal and contempt. On the other hand, those who seek an abortion are not afforded health care, pre-birth, for the mother and child. The ONLY thing this group concerns itself with is the actual birth. Pre-birth care is denied and if feeding the day old child is needed the same political group always have the guillotine's blade hovering over any assistance for the child to be nourished. After all, it's no longer their concern. They are SO caring regarding the child. The so-called health care "system" in this country may soon have their fingerprints of the life expectancy of the nation equal to many third world countries.
10
I don’t believe in “The system “
Life is hard when we or our family or our loved ones are sick .(with cancer ).
No system can help your hardship and pain .
It’s there and you just have to carry on .
Be strong , face it and help in every way possible.
It doesn’t matter where you live .
2
@Janie Massry "It doesn't matter where you live." Read the comments of people from other countries and talk to friends, colleagues, family who've travelled and lived elsewhere. I have family in Asia, Canada, and Europe, countries with national healthcare systems to support the sick and their families when they fall ill, including mundane things like meal delivery, transportation, housekeeping, most of which is prohibitively expensive, not available, or not covered by insurance in the US. People in many other countries don't fear illness or aging in the same way we do here since these two events can and often bankrupt US residents. I write this as someone who has worked with social services to obtain this assistance for patients in the US.
10
We Americans are big fans of small-scale social support. The kind that wreaks havoc in the lives and futures of non-millionaire family and friends.
We abhor wide-scale social support. The kind that brings us all together to help one another, even the poor and friendless. (Eeek! Socialism!)
Thanks for nothing, Ayn Rand.
38
@MLChadwick. Nicely put.
6
Failing to support ill people through their treatment period is nasty, but Americans seem to have chosen low taxes and a "fast buck" for some instead of a good life for all.
This is the same specious determination made when governments in the past determined that some people were "life unworthy of life" and spent assets to kill them en masse. Once one does this with one group, all others are threatened.
This seems a refinement on that awful history.
3
I happened to read a similar story pertaining to this subject last year in this paper itself written by a doctor of Indian origin.
It’s nice that Jim has recovered thanks to all the people involved in taking care of him including the entire hospital staff, without which it’s simply impossible to recover.
I fully support the writer that there should be some provision in the health insurance policy to adequately compensate monitarily the expenditures incurred and the time spent by the people for taking care of the critical patient without which it will be too tough for the majority to manage their financial resources.
2
And recent news reports suggest Trump is attacking the ACA, again. Going to get a lot worse for all, especially those without resources.
16
This article focuses on cancer - which is a disease which can go into remission and in some cases be cured. Thus, caregivers, in spite of the strain, have the hope that all their efforts are worth it and will lead to a positive result. How about the diseases for which there is no possibility of a positive result? My husband has a rare incurable neurological disease, multiple system atrophy (MSA). As MSA progresses over the years, it demands more and more from caregivers. All MSA patients die of their disease, either through falling asleep and just not waking up one day, (which is the preferred path to death for MSA patients) or if surviving, being totally paralyzed and bed ridden, sometimes for multiple years. The demands on caregivers are intense, most patients being taken care of at home due to both personal commitment as well as financial considerations, and there is extremely limited health system resources (mainly hospice) that provide help. MSA caregivers have their own online support group, and we discuss with candor the impact of this disease on us. Some of us end up with post traumatic stress syndrome, due to the unrelenting physical, emotional and financial demands of caregiving. We are an exhausted isolated bunch of people with no hope for the future, except to wish for a "good death" for our loved ones.
20
Suddenly when it's a man providing this sort of help it's noticed? Women have long been missing work (or, indeed, entire careers) caring for children, elderly parents, sick and aging husbands, dying friends, cancer stricken siblings... You're not telling us anything we don't already know!
39
@cgg
While part of me agrees with you, I would also say that I have known men caregivers who for years provided ALL the care to their wives -- without the kind of social support network that women more often have -- and never complained. We should be careful about divisiveness here. What we really need are systems that work for all -- rich or poor, rural or urban, singles or members of large families. We can do better.
11
@Calliope
Agreed. A former male companion of mine -- he is now deceased -- had taken care of his ill wife for years and years on his own. It was terribly hard on him but he was gentle and embracing of her needs.
They had no children and no extended family members were still alive in the final years.
He was a good, kind man of amazing human stature and there are many good men out there.
5
Caregivers often die before those they are caring for. Happened to my mother. I do find it startling that it took this experience for a doctor to recognize the difficulty of this.
22
Welcome, Mr Carroll, to the usually quite (female) gendered world of care and caregiving. I’m glad you’ve discovered how societies — here the US — have successfully offloaded the responsibility for care unto individuals and families/ friends. When care is privatized and marketization, there is no solution other than throwing more private money at it; if you don’t have money, you need family labor. Even with money, you need people to sacrifice their own self interest. The whole model is so fundamentally broken.
My husband died at age 53 of cancer. I have to count myself lucky that we had great insurance, a great group of family and friends, and no one was bankrupted by the agonizing process of watching him die. We are in a minority of cases. Apparently over 70% of those with a cancer diagnosis go bankrupt, either to pay for meds or bc of sacrifices as caregivers. What a country! What a world!
22
It's an absolute disgrace. Professional caregivers (who typically work via an agency) should be receiving far, far more money for the work that they do. I've already determined that if I ever need to use a professional caregiver for myself or a family member, that I will give them extra cash under the table. Many professional caregivers in NYC travel 1-2.5 hours by public transportation to get to their charges' home. They work extremely hard, and deserve better.
Likewise, as this article mentions, caregiving that is provided by friends and family should be paid for by health insurers, Medicaid etc.
I seem to recall seeing on the NYC MTA trains, ads suggesting that non-professional caregivers could call a certain number to arrange to be paid for the hours they spend caring for a friend or family member?
1
@Lisa, good points. I believe a few states allow family or friends to be paid a modest amount for caregiving. California is one. But I don't think it's an option in most places.
2
None of us will leave this place without taking a journey with a friend, spouse, parent or child. We are all going to be caregivers or given care. This is not a hole in the health care system. This is the natural course of life, death and love.
Your friend is very lucky. Besides getting great medical care, he had friends and family who had the financial ability to pitch in to help him through his journey. So many people don't have that support. What's really sad is the professional care givers who fill a real need and are on call 24/7 are so poorly paid. There are home health care workers who barely get their gas covered to show up in the middle of the night to help a patient in need and a family member who can't cope with the pain and suffering of their spouse, son, daughter, mother, father...
Families and friends pulling together when a loved one gets sick is really hard stuff. It's a basic requirement of love and isn't something you can insure.
36
@HL
Either we are all going to be "given care," or we "don't have that support." Which is it?
Some of us -- perhaps many of us -- don't have families and friends to pull together. Basic requirement or no.
4
@Rea Tarr-
So true, after helping my late wife through a 3 plus year cancer journey, I'm in the same boat. I often wonder how I will deal with my own decline. Would I choose assisted suicide or would I fight alone the best I can?
I suspect I will pay for the best care I can get until I or the money runs out.
There is long term care insurance. I'm suspect of how long term and how much it will really provide.
4
Reading the very sad stories in the comments has motivated me to seriously consider how I would humanely kill myself if I should find myself in need of significant care giving. I have two adult children that I could never subject to dealing with our so called health care system, becoming exhausted from my care, and never mind bankrupting all of us. And for what? A few years of misery? I hope I’m strong enough to do it if/when the time comes.
45
Each family is different, I know, but had my mother taken her life during the end stage, her children would have been deprived of the privilege of caring for her. We had home hospice. I sat near her throughout the nights when sundown syndrome overtook her mind. Yes, it was hard. It was also an experience of profound love. We talked a bit. I'd never heard before about her childhood dog or the house horse and chickens kept on the farm. I massaged her feet and gave her morphine. All of her surviving children were with her when she took her last breath. The intense feeling of gratitude for our mother, and for each other, became indelible.
13
am not sure if this is 100% correct; however does not the insurance company AFLAC has an affordable policy that pays for living expenses if the insured is unable to work due to illness?
@Helga Shelton You’re talking about short term disability insurance that is available through some employers. It replaces a *percentage* of lost wages when one is unable to work for a few weeks. It’s not the all purpose miracle portrayed in the AFLAC commercials.
3
@Helga Shelton Also, the insurance companies (health, disability, etc.) always make it sound like they have your back when advertising but talk to people who have actually tried to obtain help they have paid for when they have suffered a catastrophic event. Many companies will do whatever they can to block your claim: it means more money for them.
5
My son was diagnosed with chronic myeloid leukemia in Nov 2019. He's 30 and this is a cancer that typically a 50-60 year old gets. The costs of medication ($100,000-$150,000) will cast a shadow over his whole life. I go to doc appts taking vacation time and wonder if I need to think about changing plans for inheritance (no more 50/50 for him and his brother) because his financial future may be more tenuous than his brother's.
4
With all due respect to your friend's suffering, the sacrifices made by those around him seem pretty trivial compared to what most long term caregivers do. Having to take care of a person with dementia usually means years of full-time, unpaid, self-effacing work. And it's usually a solo gig, as friends and family are often nowhere to be found. And when it's over, there's likely nothing to go back to.
66
How about being out of the workforce for a decade to care for two moms? That's what my husband did, first for his mother, who had Alzheimer's, then for mine, who suffered a stroke. They moved in with us and except for emergency hospital visits, all care was provided in our home. We were told the cost of providing this in-home care would have been in the neighborhood of $180,000 a year. After being laid off from a 35-year career (and given a whopping two weeks' severance package), we decided his role would be full-time caregiver and I would bring home the salary we needed to survive. My husband provided care that was second to none and full of the love that could not be matched by a paid employee. When a physical or occupational therapist occasionally came to our home, the first comment made was how obviously loved and well-cared-for the moms were.
For several years toward the end of each mother's life, my husband had to lift and/or carry them -- from the bed to the wheelchair, to the toilet, to the dining room table, to the car, to wherever. He developed his own physical problems in his neck, shoulder and elbow to the point where he was told he needed surgery, which he did not undergo because it would have impacted the mothers' care.
Both moms lived to be almost 100. His mother died in 2013 and mine last June. As difficult as this provision of care was, physically, emotionally and financially, we would not have done it any differently. Our hearts go out to all caregivers.
21
@Tim
This is wonderful- what an amazing story. I don't know how you did it, but being both cooperative in this, making the adjustments you did to be able to do this for your mothers, is the key, surely, supporting all the good qualities you each brought to this task. I wish we all had so much good will and the abilities to manifest it in loving kindness.
5
I’m so grateful for this article. Three years ago, my sister, who was my housemate and life partner at the time, suffered a terrible accident. During the first year following that, she lived in five different care facilities, with me following her, moving her, and getting to know and working with the care providers at each place. I lost one-third of my income that year, even as I continued to work in every spare moment I had. Additionally, I lost my sister’s contribution to our household, both financial and otherwise. (She was retired and provided care for our very elderly mother, one of many additional responsibilities I took on.) It’s becoming clear that I will never completely recover financially. I should be retired and would have been able to retire had it not been for that accident. This article is the first bit of recognition I have felt for what I did and what I lost. My sister is alive and doing much better than her original prognosis, though she remains very handicapped. I don’t think friends or family comprehend the hardship — definitely not my family who deride me for not taking on even more responsibilities. I think there’s a bit of sexism mixed in, too, as we women who work full-time are still relied on to provide this care-giving work that used to be the province of stay-at-home wives. I’m happy to have contributed to saving my sister’s life, and returning some degree of quality to it, but ... I will spend many extra years in the labor force as a result.
19
I have been on this road (cancer) for fourteen years now. Initially, I had a caregiver, my now former husband. However, compassion fatigue was a very real issue as he found our lives too cancer centric. As someone with stage four lung cancer, it was impossible (literally and figuratively) to separate myself from my disease and my family was along for the ride. Almost six years ago I made the decision to leave my marriage and have been managing this terrain (I am enrolled in my third phase I clinical trial) solo. With progression of my cancer again and no next therapy--experimental or otherwise--the road is getting rockier. As a vocal activist for cancer patients, I have pushed hard for greater supportive services--particularly for those of us who 'volunteer' for clinical trials. We are carrying an amazingly heavy load as we take on not just more risk, but greater financial burden through our participation. Contrary to most people's perception, only drug has been free in my trials--all other medical procedures billed to insurance. I max out my deductible in January every year. And transportation, parking, meals, dog care--all paid for by me. This is unsustainable. I am broke, weary, and doing my damndest both to stay afloat financially and to stay alive.
19
While commenters here include men who have provided caregiving for spouse, child or parent (kudos to them), the truth is the burden usually falls to women, wife or daughter. When women take time off from work, it is even more difficult for them to return to their careers without suffering a further decline in income/status/promotion, etc.
When the man leaves his job to give care, everyone congratulates him on his sacrifice. When the woman leaves her job, everyone resents being burdened at work to cover for her.
25
@Karen K Not only that, research shows most women will stay and take care of a sick husband where something on the order of 75% of husbands will leave or divorce a chronically ill wife.
12
Thanks for writing this article.
I am a cancer survivor and wouldn't have been able to make it through without the support of my parents and extended family.
The economic cost was huge for them. I live in Montreal, but they came to help me from Connecticut and that meant weeks off work to help me during chemotherapy.
I am very grateful to them for the sacrifices they made and my employer, SAP Labs Canada, for the flexibility they gave me to return to work after battling cancer.
Chemotherapy is a battle for life that involves everybody around you. It should not be taken lightly. The human and psychological cost of taking care of someone with cancer is very high.
12
We often hear "It takes a village..." when referring to raising children, and indeed it does. However, it takes a village for every life stage. With families, in many cases, scattered across the country, there is an even greater need to develop a circle of friends and family that can be the support and caregivers when medical crises happen. I work at a non-profit lodging facility that provides a place for patients and/or their caregivers to stay when having to travel distances for treatment at our medical center. Our families pay from $15-40 per night, depending on income, for a safe, clean, and comfortable place to stay while the patient receives the best care. They also have the built in support of being surrounded by people that are in similar circumstance and they hold each other up with the care, compassion, and support of a family unit. We offer things like per therapy, bingo, hot meals, transportation, music and art therapy in order to give the caregivers and patients a chance to self-care and disconnect for even just an hour from the stress and tension of their situation. Some share that they have friends and family members that cannot be here with them and ask what they can do but they are not sure what they need. I suggest they tell them that gift cards for gas, food, or lodging are helpful in lightening the financial burden or things like mowing their lawn, caring for their pets, taking in their mail and papers, etc. Caregivers are critical.
10
If you are going to talk about caregivers you also need to include all the children who are now talking care of their parents. Often it is not that they have a serious illness but that they have minor ones that make it difficult to deal with day to day things. This makes it difficult for both their kids and the parents who no longer have the independence they once had.
Plus it puts a burden on the kids as it often comes at a time when their kids are adults and out of the house and now you have grandma and/or grandpa living with you. It effects every aspect of your life often with little outside help.
7
Kudos to Dr. Carroll for copping to his participation in his friend's cancer journey as revelatory. But what does it say that a university professor of pediatrics, one who blogs on health policy to boot, is surprised to discover how difficult it is to care for someone with an urgent healthcare need?
Susan Sontag posited that we are all dual citizens of the land of the well and the land of the sick. While Dr. Carroll shares his newfound understanding of this geography, many of us know it only too well. The land of the sick is still often misery for people with means and connections. But for the rest of us, the 98%, this land is too often death's waiting room because we lack the connections and resources Dr. Carroll's friends and family have at the ready.
19
A vacation.
What works for me/us is a vacation. As a caregiver of my wife who has had three different cancers in the last 15 years, the current one being a GBM, I can tell you a vacation can do wonders. I’m not talking any vacation, but one where you and your spouse/friend/family member are taken care of together. One where someone else is watching the kids, cooking and cleaning. Where days don’t have to be planned and you don’t have to be anywhere at a particular time. Where you don’t have to worry while being 50 miles away at work every day.
Every other year or so we plan a trip to an all inclusive resort. Yes, getting there and back is stressful, but once there, it’s a week of just the two of us. No doctors, no scans, no waiting for results. No medical bills or insurance hassles. No worrying about paying for meals, shopping for meals, cooking meals or cleaning up after meals. No housekeeping, no feeding the cat or cleaning cat puke. No work (we go out of the country for this purpose). When we return, we’re closely bonded, refreshed and ready for the next matter. Work and family gets a better me, and her doctors are always amazed at how much she improves.
Typically this trip costs 3500-4000. Her quarterly scan costs $5,000. One month of her Avastin cost $70,000. Most years we lay out $10-15k of out of pocket expenses plus insurance.
It’s too bad insurance wouldn’t cover the cost of “vacation therapy”. It’s the most effective treatment I’ve seen.
10
I’ve been a caregiver of one sort or another at least seven years when my parents entered into a nursing home with dementia and died, most recently my mom passed four weeks ago after suffering a major heart attack eight weeks ago. Three years ago my wife was diagnosed with Stage 3C ovarian cancer. That has been an ongoing battle and I have been her caregiver since. My mom died on the same my wife was getting her 13th chemo cycle - a most depressing day.
As a lead financial advisor in a successful practice - my time thankfully is flexible. I can physically work anywhere with a good notebook PC and for the past three years I’ve done just that. But it’s exhausting being the caregiver at home: food, laundry, nursing, running to/from appointments, shopping, etc. The career work has required occasional creative time & schedule management. But you get it all done because you have to - there’s no choice.
People do graciously offer help. Meals are a plus. But my wife wants me around most when she’s suffering the aftermath of the two chemo drugs she gets every 21 days. People ask about me too and I am lectured to take care of myself. I appreciate their concern but there is little that I can offload to them. I don’t have an answer on making it easier. The caregiving needs done. I’m grateful that we have been able to make it work. But I am tired, physically & emotionally. There is no avoiding it.
19
@Once From Rome If people offer to help ("What can I do?") while expressing concern, take them up on it. Hand them a grocery list and credit card and ask them to please shop. Or if you trust them, offload the laundry basket. Could they vacuum or dust while you're at an appointment? Lifts the spirits to come home to a clean house. Or, if you can afford it, hire house cleaners to come in every other week. Maybe someone can visit with your wife one evening a week while you take time for yourself--dinner out with friends, a movie, whatever.
5
@Once From Rome
If you can afford it, please consider a housekeeper. The time you spend doing chores could be spent caring for you. I know it is difficult to take care of yourself when your wife needs so much. Resist the urge to wallow in guilt for every moment you feel pleasure. Staying you matters to your wife and her care.
4
Not just cancer. Any serious condition. My husband has been very ill since the middle of last year and I have been shocked at how much time must be spent navigating the healthcare system and fighting with insurance companies. That doesn't count the actual time spent as a caregiver, taking care of all of the household needs, going to appointments, etc. And I work in healthcare. And I have what would probably be considered to be good insurance.
People say the caregiver should look after themselves but nobody really seems to offer a way for that to happen. It's almost an aside at the doctor's office, if anyone thinks to mention it at all 'Oh, you be sure to take some time for yourself- you're no good to your husband if you are completely depleted'. Nobody really cares, though. When my husband required my assistance for every single activity of daily living, as he did for a time, who was going to do it if I didn't? When he fell every time he tried to get up and ambulate on his own and I had to use furniture straps to get him up because I had no other way--nobody cared. I had to fight to get even a little bit of home care for him--and they would breeze in, change his dressings [once per week] and leave.
And who cares if my health or career suffers, as they both have, because any way you slice it I am better off than him. I know all of that but it is still a daily struggle and I wonder how we'll both come out on the other side. What else can we do but try?
27
amen!!! I was working full time and filling in for nurses with my declining stepfather. I needed sleep. when people asked me how they could help, I would say, " just spell me for one or two nights so I can sleep. no one took me up on it. @Sandy
4
My 94 year old mother died recently. As an only child, I spent much of the 4 months immediately prior to her death with her in the U.S. (I live in the UK). The U.S. health care system presumes we all have a very large network of reasonably idle friends & family available to care for / be with a seriously ill or dying person available and living quite close by to the person requiring care. And this person is presumed to have cultivated a large circle of acquaintances & friends from the 'Y', church, the garden club, etc. I did not (my mother's friends were either very old, far away, taking care of their spouses, or already dead). Hence I was with my mother some 10 to 12 hours each day (had to run errands & be out of her apt. as well). Towards the end, I had no choice but to hire what the system terms "custodial care givers" during the night at some considerable cost (hospice care via Medicare does not cover this at all). Hardly what I would have liked, but I could not be up 24 hours a day many days running. As such I feel my mother (a very private person) did not not get to be with me (nor I with her) as much as we should have dur her last 3 weeks. To say nothing of shirking my responsibilities as a father with a daughter in her last year of high school here in the UK. My time out of the UK may make it difficult for me to acquire the UK equivalent of a 'green card' given this time in the U.S. Can't imagine how families with less financial resources cope.
18
Our 22 year old son was diagnosed with colorectal cancer in 2016. I was his caregiver. The family leave act needs to be changed to include siblings. My husband works for a small company so he couldn’t get much time off. My older son wanted to be by his brother’s side but couldn’t get the FMLA so all dr appts., chemo etc. fell on me. July 2016 the hospital messed up a procedure and our son aspirated, he was on a ventilator for 7 weeks before he passed away. My husband and I lived in the little alcove in his room for 7 weeks because everyday we were told our son was going to die that day . After my sons death I was devastated, was off for 2 months then on short term disability for 6 months so received 60% of my salary. The financial hit we took has totally derailed us and we still have not recovered. The emotional hit, well not sure we will ever recover. Our Insurance does not cover any grief counseling... any I called were at least $100 per visit. I went a couple of times but felt too guilty spending the money. The world would be a much better place if focus was put on the human condition, but it’s not. The focus is profit, how much mone executives get paid, bonuses etc. Many of the people that are in charge are very wealthy and will never experience the financial struggles and worries that come when a loved one has a critical illness . After my son died and I came back to work I was told corporate does not care and if I couldn’t be back at 100% I could quit.
48
@Carleen I am so sorry for the loss of your beloved son. The rest of it is adding insult to injury.
9
@Carleen
But those executives got their bonuses, and their raises, that’s all that matters.
4
@Carleen, There is no ending to the grief of losing a child. That you had to suffer during those last seven days is unspeakable. That you can function at all is something I cannot comprehend. Voices like yours of mothers and grandmothers need to be heard so we can become a truly compassionate and livable country instead of an "everyone for themselves" corporate monolith.
7
My spouse was diagnosed with an extremely rare cancer with an extremely poor prognosis almost exactly 12 months ago. Since then they haven’t been able to work at all and I, the primary earner in the family, have only worked roughly six weeks with anything like a normal schedule.
We have been enormously lucky in every way, but I can’t imagine how one could manage without all that luck.
The medical team has been great. The insurance company has approved every procedure and expense. Our friends has stepped up with dog walking, snow shoveling, meal preparation, and as many visits as my spouse can tolerate.
Most of all we are blessed that my employer, who accounts for 90 % of our income and our insurance coverage, has given me essentially unlimited paid leave. We also had the financial ability to absorb about $10,000 in out of pocket expenses in 2018, and live within 20 minutes of all of the various clinics and treatment locations we’ve been to in the last year. We are also smart and well educated and not only understand what the medical teams and service providers are telling us, but can participate actively in crafting my spouse’s care plan.
If any of these lucky breaks hadn’t occurred, I don’t know how we would have managed. And it’s not as though my spouse is “cured”. The cancer could recur at any time, and even if it doesn’t there are months of physical therapy and a lifetime of immunotherapy treatments ahead.
For every one as lucky as us, how many are not?
19
@HP: I've known many people with good insurance that paid for 100% of every medical expense but NEVER heard of an employer that said "you have unlimited PAID leave time". You have a really amazing and unusual boss! I also have wonder what you do that is so valuable and unique that anyone would extend to you that benefit. Even in Scandinavia, I am pretty sure nobody gets unlimited time off at full pay.
8
I had throat cancer. At first I did all the diagnosis and biopsy appointments by myself. But I needed someone to be with me when I had surgery with an overnight hospital stay away from home, and someone to take me to get all my teeth pulled. Then I was able to do the first couple of weeks of radiation on my own as well, but for the remaining weeks I needed a driver, two hours each way on snowy roads plus however long I had to be there. My husband did the surgery and oral surgery dates, and one day each week for radiation. We have no local family, so friends took up the slack for me; a couple of them work part time and their husbands are retired so they could drive. None of them let me buy them lunch or took a dime for gas. Another friend works for a school district as does my husband, and both of them could take sick leave to help me. It helps, I guess, to be older when cancer hits.
Our daughter, who has disabilities, was living at home and attending college. She could not help with transportation as she cannot drive in the city, but she did become quite a bit more independent at home, not having Mom to get her up and to bed on time, fix her meals, etc. She also did more pet care and helped me when I was home so it was a net plus for her.
8
As a physician in a caregiving role, I have found the healthcare system complicated. It’s amazing how disjointed care is and how often caregivers need to be present and on top of things to keep our family safe.
The time commitment for caregivers is tremendous. Private help is available, but very costly for most of our population.
The significant stress to families, patients without fair compensation is no way to our populations healthy. We need to join the rest of the world.
23
Can every single person who is sharing their sad experience with our broken healthcare system write a letter to their congresspersons? I feel supported by reading these comments and knowing that I am not alone. But what we need is action!
32
@Garden girl: we don't even have universal health care for American citizens -- so how can we imagine changing the system for the elderly or disabled? they already get Medicare and Medicaid, FAR more than the rest of us!
You want CHANGE?
In January 2017….FOUR MILLION WOMEN marched to protest Trump's Inauguration….4 million! wearing hand-knit pink vagina hats! it was all over the news.
Has anyone, EVER, marched to ask Congress for universal health care? EVER?
There is your answer.
7
Somehow I got through caring for my dad in his cancer and never complete recovery. I had my husband and 7-9 year old son as back up. I believe my child benefited from this, hard though it was. Our financial hit is impossible to measure. My brother helped a bit. Very hard for families. When dad was in nursing home I brought our dog to cheer others and was sometimes greeted as daughter of the year by staff. That still makes me feel proud of our sacrifice.
14
Thank you for this article. This is Allen's wife. I am his full-time caregiver; he has had Parkinson's since 1999 (diagnosed). He is now 68. He's been on disability since 2003, when he was 52. So we did not get the benefit of his highest income-earning years. I lost my career job in 2008. Everything costs more when a family member is sick. Everyone is too tired to cook, so we order in. Everyone is too tired to clean house, so we hire a house cleaner. Only the caregiver can handle most of the chores - paying bills, taking out the trash, packing the boxes to move, unpacking the boxes, figuring out the technology, finding a place to live that will be suitable for my husband, and on and on. Things you never think about. The best thing everyone can do for a caregiver they know is to provide something they need - mow the lawn, pick up groceries, bring over a dinner - you can just DO IT. And please don't forget them - chances are they miss you but don't have time to call or are just worn out. Thank you!
41
Many people don't have family or enough people who can leave work to help them. As a single mother of 4 who needed a bilateral mastectomy because of early stage breast cancer, I was mostly on my own. I worked in a major hospital and was a couple weeks shy of being eligible for short term disability payments, and it left me without income while I was off work. The head of our department seemed angry that I would not be available for the night shift, there was no support there. One employee who hardly knew me donated a week's vacation pay to me, and I was so grateful. I was discharged in 24hrs. Friends brought meals, but they couldn't leave work. I was supposed to be off work at least 6 weeks, but had to go back in 3. Losing that 2 weeks pay was a real hardship when you live paycheck to paycheck. I still had to be off several more times for more surgery and doctor visits, all unpaid, and aggravated that department head more. My story is nothing, compared to these and many others I know of! If I had needed chemo , I probably would have lost my job and worse! People should be able to have caregivers, paid by their insurers, or some sort of state disability insurance. Hospital social workers should be able to help people with referrals when they don't have anyone to advocate for them. The entire system is broken!
36
The American Cancer Society discriminates against cancer patients as well. They won't take you in their Hope Lodges (hotels) without being accompanied by a caregiver, even of you have no family or friends who can help you. That is an inflexible requirement. Stanford University's Guest House is the same way! Even if you are just coming from a long way for a meeting with a doctor before your eventual hospital admission or treatment and you are fine to be alone.
27
Let's face reality. It costs a fortune to be sick, especially if you have to journey out of town for treatment. Many of the costs should ultimately wind up being born by the individual, otherwise it would bankrupt the system.
Recently I had surgery at a major hospital in New York. I had to travel to New York along with my assistant. I had to pay for two airfares, as well as the cost of housing during my stay at the hospital, and after my release before I was able to fly home. The cost of the hospital alone, born by insurance was $8000 a day. After five days in the hospital they wanted to me to go to my "temporary residence" until I was able to recover enough to see the doctor, have my staples removed and fly home. The cost of the temporary housing while I was in New York was $343 a day. It cost me over $5000 before I was strong enough to see the doctor, have the staples removed and then fly home.
Now that I am at home I still employ my assistant as my care giver.
While the cost of these items are quite steep the care is well worth it. The insurance should cover the cost of the hospitals, doctors, surgery, medications and so on, but not necessarily the cost of the care givers, and temporary residences, because it would bankrupt the system. It would just simply be too expensive.
The moral of the story? Always take the "Out of network" insurance option. I paid $95 a month for that option. Put a few dollars aside for emergencies.
8
@Louis So its better to bankrupt the individuals, not the system?
Who does the system serve if not the individuals?
2
@Louis
"Many of the costs should ultimately wind up being born by the individual, otherwise it would bankrupt the system."
We have the most expensive system in the world, but not the best or most inclusive care. The system is already bankrupt in every sense. If we don't rebuild this from the ground up, the only people who will survive are like you - wealthy enough to hire an assistant. News for you buddy: that isn't most of us.
4
@Emerson Scott
My point is, is that it's not practical to cover everyone's medical expenses across the board. It cost me a fortune to go to New York for treatment. I could have chosen the local doctors where I live, but they did a much better job in New York. If you multiply my case by several thousand other people, the costs would quickly become prohibitive.
It's not a question of bankrupting the individual, it's a question of making choices as to where to spend the resources.
3
It’s not only the caregiving, but the time investment required to understand, to the best of your ability, the illness or condition from which your loved one suffers.
When my mom had cancer many years ago, my father was still working, going to doctors appointments and the hospital, and spending hours at the medical library trying to learn about leukemia. He is the patient now, and although he is a very educated one, he still has a “team” of family members supporting him. I can’t imagine going through it alone, it seems almost impossible.
13
Truer and more important observations about quality patient care have never before been published in a source with the stature of the New York Times. in the end, it is almost always the unpaid caregivers who help a patient get through the stressful treatments or see them through when all treatments fail. As a society, let us turn our attention to helping these caregivers do their most essential work.
18
I am SO happy to see this issue covered. I have been a caregiver for my fiancé for nearly a year and a half now as he battles a rare form of non-hodgkins lymphoma. Our fight has included chemo, radiation, clinical trials, and a grueling bone marrow transplant, which required 24/7 home care. He's on long-term disability with adequate income. Meanwhile, I've been trying to balance work, his health, and 3+ hour work commute (because we moved closer to the hospital for his care). Without the financial support of his family, it would not be possible. I thank you for giving caregivers like me a voice. The only thing I would add, is that the caregiver burdens go beyond financial/time - the emotional toll is significant and balancing finances, treatment scheduling, AND tremendous emotional stress is challenging on the good days. It's soul-crushingly insurmountable on the bad.
43
I have been a single parent and our household's only source of income for many years. In 2014, one of my children experienced a health emergency that turned out to be a chronic illness. Treatment was located a couple of hours away, involved 3 hospital stays and regular doctor visits (which are still ongoing 5 years later).
I was well up the ladder in a professional position, so I took part-time FMLA leave for 18 months. The day it ran out, my position was terminated for "financial reasons" (despite my always-stellar job reviews), leaving me unemployed in my mid-50's. Now I'm working part-time making 1/4 of my previous salary and still caring for a sick child.
When conservatives pander about "not having kids until you can afford them, I wonder if they know that actually means NEVER for every American?
61
The reason there’s no formal “system” to support carers which has left a “gaping hole” is that society has always assumed that there’s an informal caring system called “women” who take primary responsibility for caring tasks of all kinds (which have never been regarded as “work”) on an completely unpaid basis. So what you have pointed out is actually an entrenched and often invisible form of gender discrimination and an anachronism from a time where women didn’t have careers. It also explains why carers are among the most impoverished and vulnerable groups in the world. While I doubt there’s a government in the world who could actually afford to pay carers the value they actually deliver, it sounds like much more could be done in the US in terms of better leave entitlements. In Australia we also have some social security for carers of persons with disabilities, those who are old and frail and persons suffering serious illnesses. Although, it’s not particularly generous, it’s better than nothing.
57
I have been and am a white college educated caregiver (CNA) for the past few years. All my coworkers are sensitive immigrants who don't blink at hard work. I am pretty much the only white person at these facilities doing this work. It has been a very humbling experience which is why I do it. The money certainly isn't. Sickness, death, etc. are not in our faces in America like in many other countries. Americans get uncomfortable with the directness of the grunt work and prefer being doctors/PTs/etc. and you also have money. I'm learning about privilege and classism in "our" healthcare system. Having studied, travelled, and lived in many parts of the world this experience has been very spiritually fulfilling.
21
You're absolutely correct in many aspects. I never went into nursing for the financial compensation, but because it was rewarding & satisfying. Prior to getting my nursing degree, I worked as a nursing assistant in a skilled nursing facility. Emphasis was on quantity not quality; the nurse supervisor insisted I get my list of patients washed, dressed & out into the atrium with a maximum of 15 minutes per patient. I asked why couldn't I spend more time with each provided all were cared for within several hours. There was no compromise. I refused to compromise my values & left shortly thereafter.
It's depressing for many & the pay is poor. HHA are almost all foreign born & as live in aids make minimal money with no benefits. It's not surprising they burn out after working for months. They don't want to take time off because they don't get paid; a horrible cycle.
Thanks for your diligence, dedication & decision to stick with it for all the right reasons. You're truly among the rare few!
2
As one of the oldest Millennials and one who has chosen (so far) to remain unmarried, and with a chronic congenital condition (cardiac) that occasionally requires minor caregiving help, this continued issue in this society (not just the USA) is a concern of mine. Even if I find someone to spend my life with, I shouldn't have children. Unless we fix this broken system, I often wonder if I am going to spend my final days alone, with a lack of caregiving hastening my demise. As the rules stand now, unless they are direct family, my support system cannot take FMLA to help me out.
The solution should be a two-pronged approach. First prong, modernize FMLA, allow up to 6 months paid, regardless of the amount of PTO a worker might have. I would also advocate for the worker keeping their PTO separate from the FMLA. Another important aspect of this would be to allow part time work to keep health insurance/other benefits. Second prong, pay all caregivers (professional or family) a living wage. A person who cares for others as a living should be entitled to make a wage where they don't have to work a second or third job to make ends meet. This is work that is important to a compassionate, functioning society.
It is time for us to make our government take care of us, at least with policies that allow us to be with our families in the greatest times of need. Right now, the system is broken, and I fear for my future, as well as for anyone with a current or future heath crisis.
6
@Melody0375
The Trump administration is aggressively trying to destroy what’s left of the Affordable Care Act. If they succeed, do you think the Republicans have a replacement? Of course not. The hardships, the cruelty and the bodies will pile up.
4
this appears to be a problem with individualist cultures.
Years ago I read an AmEx survey of individualist vs group cultures of over 100 countries.
The most individual culture was USA number 1 followed by Australia number 2.
The most group culture was Venezuala 1 followed by Taiwan 2.
I am Australian - my long-term partner is Taiwanese - so that has been interesting.
I like to think that Japan has group caring for its many elderly citizens in a fairly individualist culture - while China has group caring for the elderly in a paternalistic family-centric culture with collective public park dancing and exercising routines.
I have always been horrified with the stresses of our nuclear family model on single mothers - when this is not how we lived for all our prehistory, we lived in villages - 'it takes a village to raise a child' - similarly who cares for old people when they are alone.
My local community centre (near Chinatown) is daily chock full of old Chinese playing chinese checkers, ping pong (5 tables full!), singing opera, having lunch, doing art, putting on performances - I'd love to play ping pong but many of them look too energetic for me !
8
An aspect missing from this article- there is no budget to assist caregivers. I cared for my mother, who had stage 4 lung cancer. The hospital provided support for her, including therapy. I had no support. Caregiver burnt out is real
25
@Alex
Yes caregiver burnout sure is real. In th UK I am told the caregiver has a social worker assigned to them and a small stipend. That would have been nice
4
Interesting story, but very limited focus. How many other illness require caregivers. And what about the elderly? Alzheimer is a demanding illness that can put an overwhelming burden on a family.
22
It’s not just cancer by any means. I cared for my husband after his stroke. He needed full time skilled nursing and I learned how to do it. The alternative was a nursing home and all our retirement savings would have been gone. The doctors and nurses were great but there was no home support unless I paid for it and no support at all for the caregiver. In all the time I battled backaches, exhaustion, anxiety, depression no one in the system ever offered any help. In the American system there is no help for the caregiver.
28
@AMSH Yes, the financial burden placed on a surviving spouse who has had to place their loved one in a home because they physically cannot handle the work (forget the emotional burden of caregiving) is real and needs to be addressed by society as a whole. To exhaust all your retirement savings on a nursing home so a spouse is left with nothing but a roof over his/her head, with no ability to maintain that house, is a travesty.
2
A difficult question behind the story in the column and the stories commenters have shared is whether treatment will in the end prove to have been worth it.
Will the treatment have extended life, with reasonable quality of life, beyond the point at which the patient would otherwise have died? For how long?
What does Dr. Carroll have to tell us about the survival statistics trumpeted by the cancer treatment industry? Can we really rely on them as a guide to choosing whether or not to be treated? For which types of cancer?
It is hard to escape the conclusion that most so called extended cancer survival is not real, but an artifact of early diagnosis and what epidemiologists call "lead time bias."
Many of us know people who were "battlers" and "survived" for periods not much longer, if at all, than they could have expected without quality-of-life-destroying treatment. Where's the pay-off here, except for those delivering the treatment?
10
@csp123, oh gosh. For those perhaps hundreds of thousands of people who have had cancer, together with chemotherapy, radiation, and other life-saving treatments, the pay-off is that the treatment saves our lives. We can't know for sure whether in the long run it will have saved us for a short or a longer period of time, nor whether the cancer will recur some day. I'm beyond grateful to those "delivering the treatment" for being able and competent and caring enough to have saved my life. I'm absolutely certain there are hundreds of thousands of folks like me who feel the same way.
17
@csp123
The standard measure of the efficacy of cancer therapy is the five-year survival statistic for a group of treated patients (the treatment group) compared with an untreated matched group (the control group).
2
You are stating what the cancer treatment industry says, but this does not mean the treatment is providing longer life than would be available without the treatment.
3
While more or better paid leave time for family and friends would help caregivers, I think to really address the problem you’ve also got to have some government subsidy to make it easier for people to hire caregivers, so that family and friends can be relieved of some burden, and caregivers can be paid higher salaries.
17
Your suggestion might be a good idea, but please refer to it as a taxpayer subsidy. The government has no money other than what it takes in in the form of taxes from citizens.
5
@Ann
Eh, there are other taxed revenues that are not from citizens that the government draws from such as tariffs, customs duties, investments, etc.
4
@Ann Let's take in some of those taxes from the corporations who can well afford it (Apple, anyone?) instead of cutting their taxes further.
1
I didn’t see any mention of what happens when the patient’s health insurance is tied to the primary caretaker’s job. That’s huge. I know. I found that I could be in two places at once (three if the kids were sick), but not fully be at either. I’m haunted by all the things I regret because I was grasping for air at the same time he was dying. At least we had health insurance.
21
If you want to know why caregiving isn't valued in our society and healthcare system, it's because it's often seen as women's work, despite the tireless efforts of the many men in our lives, as evidenced by these comments. So just like so many other things associated with women, it is devalued, when it should be part of the way we support each other in this society.
68
@Miffy
So true. My husband has accompanied me to every appointment, hospital stay and follow-up visit, neglecting his photography business to do so. It hurts us both, because I hate to see him lose that part of his life while I'm struggling to simply live.
And there are the many errands caregivers do -- picking up prescriptions, grocery shopping, maintaining a household -- the list is endless.
If you know a caregiver, offer to stay with the sick person for an hour or two a week, or accompany them to an appointment. Having an hour or two a week to yourself is what many caregivers dream about.
10
lTraditionally in cultures the world over, it has been daughters who cared for elderly parents or even sick siblings. The youngest girl in the family was born into this role. Eldest or only sons might have been expected to welcome aged parents into their homes, but their wives and daughters provided the care. The care given by females was taken for granted.
Nowadays, there is more sharing of caregiving and caretaking among all siblings, depending on circumstances and proclivities. With spouses, whoever is the stronger one assumes the responsibility. I have known many husbands who cared for their ill wives at home, with little help, until this no longer was possible.
1
@Miffy: I am not sure it is devalued so much as considered an OBLIGATION. You are a mother, a wife -- of course it is expected you will do this, no matter how consuming or sacrificing it is.
I do see men who do a lot, but in general....if they have a wife or even a girlfriend, it gets dumps on them. Your daughter in law is more likely to give you care in old age than your SON. And that is not because sons don't love their parents, but because if you are a primary breadwinner or earn the most money....your value is as "worker bee".
2
I was lucky. Really lucky. My parents waited on me hand and foot. Both of them went with me to every single appointment, sat with me during chemo, and took me home. The one time they had to drop me off for chemo, they kept asking whether I needed one of them to stay with me. My father kept me stocked up on classic Disney animated films (which I watched during chemo) and my mother made whatever I wanted for breakfast, lunch, and dinner. They doted on me like I was a little kid. I was 28. I met my now-husband during my first cycle; after my diagnosis I went unemployed for more than two and a half years. The cost to my family probably numbered in the low thousands. It was the best and worst time of my life. Nine years in the clear this November.
27
@Mathilda
Kudos to you, your parents and your husband. Being a cancer patient is hard (I have metastatic breast cancer), but being a caregiver may be even harder.
My husband is my lodestar, my hero. There are no words to thank him for his love and support, for putting his own life (and business) on hold just so he can hold my hand.
Everyone asks about me, about how I'm doing. I'm doing OK. He's the one who's pulling down double-duty, taking care of everything I'm not able to do anymore and caring for me on top of everything else.
Blessings to all the caregivers, paid or unpaid; their value can't be counted in money alone -- but it would sure help is there WAS some money thrown at them.
4
@Mathilda Hooray! So happy to hear you're still cancer-free. My son is now a ten-year survivor of a GBM and yes, we did the same for him and the cost to us was in the thousands. But at the time, we would have happily given every dime we had and lived on the streets if necessary to see he was taken care of. I'm sure your parents felt the same. And he will say the same--the best and worst time of his life.
1
Not sure why this is news ; anyone with a challenged kid or elderly parent knows this. The fallacy of this article is that the support of friends and family is required. Definitely it is optimal but the truth is - sadly- that many single people deal with all this on their own. It just takes living in a NYC building to learn this. What people need to be told is to have 10 kids so you create a support system; otherwise prepare for a difficult time alone, if not cancer when young, when you are old or have a child.
24
On April 17, 2017, I was diagnosed with triple negative breast cancer which is "aggressive and difficult to treat." Although your article is "not a story about how the system failed", the fact is the system is failing. I've been a practicing clinical RN for fifty odd years. After more than a year of chemotherapy, several surgeries, and radiation, I can say, unequivocally, the system is broken. If you are not accompanied by an advocate who knows what care should be given and is not afraid to speak up, you're in trouble. The average patient has little or no idea what appropriate care is, much less what constitutes good care. It is not the patient's job to figure it out and manage being sick at the same time. I have no doubt that this is a "systems" problem, however, providers who continue to be controlled by hospital administrators and insurance companies are complicit. There is strength in numbers. If nurses, doctors, patients, and other caregivers would find a common voice, things would change. All of the caring people who prepare for years and work hard are selling themselves short by allowing themselves to be manipulated by the "system." The patient, the families, the caregivers - everyone is harmed. No one is spared.
42
When I was working full-time and my husband was home caring for our two preschoolers, he fell into a crisis of his bipolar disorder. I couldn't take FMLA because I couldn't afford to - we only had one salary for 4 people - but also because we had to get divorced, and then I wasn't eligible for FMLA anymore. Why divorce? Because my excellent Blue Cross work insurance still wouldn't pay his psych inpatient bills, so we had to divorce so he could get Medicaid.
50
@Karen Carr Thank you for sharing this, and I'm so sorry for what you've had to go through.
13
Heartbreaking
3
@Karen Carr This gruesome choice is also presented to older people when one of them needs 24 hour care or a nursing home. It is deeply distressing to be told that you have to divorce your lifelong husband so that he can qualify for Medicaid and you can still have enough left over to afford cat food after he's died. Horrible system.
7
I took care of my father during his last three months with lung cancer and I was an experienced oncology nurse. Caregivers don't get a shift relief. I was afraid to sleep because he became very confused and didn't recognize his home. The entire experience with hospice was very mixed. In some places there is no caregiver relief (Long Island). In my hometown, they provided someone to come at night so I could sleep.. but the aide only came once and called in the other 2 times. I had the help of my brother for most of that time. I returned to work after he died for about six months but had to quit and take a break from nursing for 2 years because of burnout/caregiver exhaustion. I did not receive FMLA because I had not been with my employer for a year (I had quit to move-relocate but moved back when his illness was diagnosed). Our health care system and work culture are dysfunctional and inhumane.
52
Glad this physician now recognizes the problem. It has been a major problem for women for decades and has been widely written about. Wives, mothers , sisters, aunts, neighbors II almost all women -- are expected to be the caregiver while men go to work
I hope that is improving but am kind of horrified that a PHYSICIAN was so clueless until it happened to involve him. Doctors see the person as the patient
53
Couldn’t have said it better.
7
@kathyinct Exactly.
2
The next article "rich people discovering stuff the working class already know" article ought to talk about how little we pay our preschool and day care teachers, not to mention home health aides and personal care attendants who are rendering the care affected when one family member becomes critically ill. A deep dive into the hypocrisy of wanting English-speaking white people to do the work that only the very recently immigrated are willing to take would also be refreshing.
And here's a genius idea: ask the multiple presidential candidates what their plan is to bring jobs into the middle of the country that don't require a college degree and that do provide regular full time work at a wage of $15/more an hour. Coastal collegiate track career planning is short sighted and classist.
Of course, it takes a white guy with a Ph.D. to get any attention paid to these issue, so go off, OP, I guess.
27
Why move to Ecuador, do they have better treatment for Parkinson’s. Seems like moving to oh Canada would have been better.
1
[Sarcasm.] What do these people expect? A free lunch? It's hard for everyone, Bud. They're lucky they're not homeless and hungry--they should count their blessings they're alive.
4
The HOLE is not in the Heath System. The HOLE is in our Society VALUES!
14
@JMorales It's the society's so-called "values" that helped create & now supports the broken health care system.
1
the whole deal now is to shift as much as the company can onto fewer and fewer employees. in all businesses! pay less, give fewer or no benefits. we have cvs's and walreens all over. i was in my local cvs picking up a prescription. the dept is allocated 4 people but its been staffed by 3. now the pharmacist tells me on friday's there will only be her and one pharmacy tech.
THIS IS NOT GOING TO STOP UNTIL THE AMERICAN PEOPLE STAND UP AND SAY NO MORE
it didn't used to be this way......
when my dear husband, a non smoker, came down w/ 4th stage metastisized lung cancer we went thru 10 months of hell until he died. he never got off treatment it was either two poisons or maybe one poison. the stuff was so bad it put him in the hospital for a week one time. luckily we had friends who would help by driving him to treatments. but i was a total zombie by the time he died. the last couple of months the pain meds had to be given nite and day so i did not get much sleep. but of course that was nothing to what my dear husband suffered.
would it be cheaper for the government to support caregivers instead of paying for hospital care? of course. just like it is cheaper for medicaid to pay for home health care helpers instead of nursing homes.
but caregivers don't give big donations to politicians.....
22
@tropical They don't pay for nursing home care unless it's rehabilitative after a hospitalization and then it's limited to six weeks. When they cost $3000/month and upwards (and usually for substandard care), figure out how long your money will last.
Unless and until we pay our front line health caregivers (the CNAs, the ones who work in the homes) a decent wage, we will never get good care for people who are most vulnerable.
My neighbor was the CEO of an agency that provided home health aides. She retired early and they are now traveling the world (pretty sure she was paid very very well). The disparity between her salary and those of the actual workers is too great and unsustainable. I feel like we're collectively heading off a cliff...
4
I have been a care-giver for most of 25 years. My mom had a serious stroke at my daughter's 11th birthday party. I with the help of my siblings nursed her for 6 years. I spent so much time with her at the local hospital's therapy unit some of the doctors would mistake me for a hospital aide.
My son had a severe anoxic brain injury at the age of 17 , my mom had already passed. He spent 4 months in ICU and due to his age I was allowed to stay in his room 24/7. I slept in the room recliner chair and worked when I could on my consulting business. Eighteen years later he is still considered a full-assist as he can not transfer from his wheelchair and has limited use of his hands. The good news is I am very healthy and strong 71 year old woman and my son is a rational patient. But everyday is difficult.
33
The US healthcare system is not set up for caregiving for serious, short-term or long-term illnesses. Most people who have insurance via Medicare don't know that Medicare doesn't cover many services patients need, like help getting from one place to another, cooking, bathing, etc.I see these issues everyday as a physician for the elderly.
In contrast, when my elderly Canadian relative was hit by a stroke and took 3 years to recover some adequate function, the healthcare system there provided her with home health aides regularly, meals, and even transport to an adult day care center. Yes, her family had to help out but it was hardly of the magnitude or stress levels US families face. And bankruptcy was not a worry despite their modest incomes.
39
@ms
AND Canada spends less on medical care than we do. It's the system, stupid, to coin what should be a campaign slogan.
4
@ms Yes but Canada doesn't have 3 times more air craft carriers then any other nation, doesn't have who knows how many F-35s or military bases all over the world.
That's where more & more US taxdollars go.
1
I have repeatedly posted in response to a variety of articles about my experience -heart rending soul killing experience- as a caregiver to a loved one.
I have spoken of it leaving me wishing I was dead, to put it bluntly, because of how difficult it was, the lack of government support and the indescribable bleakness of the loss and the hollowness that follows.
Ask me if the NYT ever took note of it and ever reached out to explore the issue further.
I guess you have to already be a 'somebody' to get attention on it.
And our government absolutely knows this is happening. They cynically count on it for free labor and in fact use it to cut services.
33
@Wish I could Tell You
When a DOCTOR says it is a problem -- because it is affecting him -- then it gets noticed
8
This is the future of everyone but the superwealthy. Not enough of anything: insurance; time; money; help. If you are lucky enough to have a job with insurance your workplace will find a way to let go of you if you or your spouse or child gets too expensive.
21
Twenty years ago when I was a family doc, there was a system in place for home health aides that would come every day if needed and for home nurses to come in and focus on assessments and medications. That's gone now. I don't even know where and why it was discontinued.
19
@ memosyne
My sister died a couple of years ago of non-Hodgkin's Lymphoma.
I flew to the US a number of times during those last years of her life, sometimes staying as long as a 2 months to help take care of her. (I am fortunate that my client doesn't care from where in the world I work.)
All that time she also had a home health aide who came 3 days a week, which was sufficient. Had she been needed daily, that would have been provided for. This was paid for by her insurance. Of course once she was on hospice, a nurse came regularly as well.
2
FMLA is unpaid and limited to 12 weeks. Earned vacation can be used to support a family member too. Once it is used up, if you can not return to work you may lose your job. This worry is real as it happened to others and made me delay taking FMLA until my spouse was in hospice status. We did not know how long he may live but I had the health insurance through my employer. My boss asked me why I was not going on FMLA. I could not speak of my concerns. I waited so long to take FMLA my spouse passed away within a week when I finally started it. The Doctors kept asking too when was I going to stay home with him. I guess they don't think through ramifications of loss of income and medical insurance with only expensive COBRA option that would have resulted and challenge of getting another job later as an older person. I did use vacation days to go to critical hospital, emergency room visits and critical dr consultations. Our adult child who was not working helped for six months of needed daily attentive care while I worked. Treatments, waiting times, testing, chemo and radiation times are throughout the working day and weekdays only. The patient and family members are tired, and worried and have to juggle appointments often at very early hours when they are not well. The processes are not flexible. Lets work on positive changes.
17
It's easy being someone's friend and family member when times are grand, but the test of a true friend and devoted family member is when times are the hardest and scariest.
I think Jim Fleischer is one of the luckiest guys I've read about because he has friends and family who were willing to miss work to help care for him. That was my favorite part of this story. Thank you for the reassurance of people willing to put their love of another person ahead of their own needs.
28
When my dad took sick with cancer, my mom (thank G-d for her) bore the brunt of it. I'd say I came in as number two. Over the course of about two years (until he passed away), there were numerous sudden calls requiring me or her, or both of us, to rush home, or to a hospital ER. I missed a ton of days from work, and caught flack for it, but muddled through. As you've said, there's a gap in the system for those who need to help with caring for somebody who isn't well.
13
@sf
So sorry that your dad passed away.
3
Meanwhile, the health care industry spends exorbitant amounts of money on bonuses to its employees who sell a product fewer and fewer Americans can purchase. When will our political leaders find the will to fix our broken health care system? Nobody should face financial ruin because of a health care crisis.
27
It's not just the healthcare system, it's the workplace too. My sister had to fight to get some minimal reasonable accommodations after returning to work from cancer-related hip surgery. She is a cashier who has to stand all day.
An acquaintance was forced to return to work in the midst of her chemo treatments to maintain health insurance.
There are many, many far worse stories of people who were demoted while getting treatment or were fired or laid off, thus terminating their health insurance.
The American workplace is by and large a cold, cruel place. It's bad enough too many bullies exist in everyday interactions, but to treat someone horrendously when they're ill and helpless is just plain sick and evil.
41
@Roxy Sorry for your sister’s situation. I’ve never understood why cashiers in the US have to stand. Here in France they all sit. There are many workplace regulations in Europe that protect workers. Americans need to fight for their rights by unionizing.
26
@Roxy
Sorry for your sister’s illness and hope she is doing better now. For sick and/or convalescing people to be forced back to work to keep health insurance and employment is in humane. One thing I really appreciated here in France after my breast cancer surgery, and the 6mo. paid sick leave, was the possibility of taking what they call here “therapeutic part time.” I was able to return to work part-time for 2mo. on full salary until my “workplace doctor” (her decision, not mine) felt I was ready to be full-time again. My employer was completely on board with it and it made a great difference physically and emotionally to ease back into work at my own pace. American healthcare is often cruel, inefficient, and outrageously expensive and needs to catch up with the rest of the civilized world.
7
If you need a care giver and your need is not sufficient for insurance to pay, you need to pay. There are massive holes in our health system, including massive obesity which are much greater than this one.
3
@vulcanalex Agree on the obesity. Disagree that you are not taking into account the expense of the medications and physician care alone. Benlysta, the only biologic for lupus, costs about $6800 per month on Good Rx. If insurance doesn't cover much of it, how on earth can a person afford caregivers? And many people with diseases like lupus flare and need assistance during those times. You may not realize how expensive the medications themselves are for diseases that are not behaviorally linked.
8
right its tough and for cancer its measured in months. For ALZHEIMER's it's measured in YEARS and no one gets out alive.
29
@Vince, you said it. As the care partner for my husband with Alzheimer's, this three-month cancer care gig sounds easy. We're three years into it, and who knows how many more to go.....
11
@Vince you are so right - 15 years of caregiving to my dear husband, raising our daughter (who was only 18when he passed away) and working full time - thank goodness I had nice friends but it was brutal, and I don’t think I’ve recovered yet (3 years since he passed). There was some brief respite care from the Alzheimer’s Association, but it would have been so much better if there was sustainable caregiver help, especially the last few years.
4
“This cancer care gig sounds easy”? “Measured in months”?
Some cancer regimens last for years. And, no, not everybody gets out alive. I pity whomever you are caregivers for.
3
Getting a friend or relative to and from treatments, caring for them before and after treatments, taking on—temporarily either in shifts or full time—some or all of the things the patient literally cannot do, and perhaps dealing with medical establishment turn out to be more than one full time job.
I was retired when my best friend was Dx’d with stage for rectal cancer, so I was in a position to keep company, and haul him to and from chemo appointments. He was a federal employee, had top of the line Blue-Cross Blue Shield insurance and access to excellent medical care. How
If a family member (rarely does just one friend take on the sole burden, although it does happen) elects, or has no other choice, than to take on the entire burden, then that person kisses his or her life goodbye, at least temporarily, and sometimes permanently.
Most would be helpers who are not members of the immediate family don’t get paid time off; the majority don’t even get unpaid time. For those closer to the economic ladder—those is the so-called “gig economy” or working near- or minimum wage jobs, often on call, and most often with no benefits—missing a couple of days of work not only spells economic disaster, it means losing your job.
I don’t have any answers to this conundrum, and neither do our politicians. Perhaps if they could look just a bit further than whether to enrich the healthcare industry, it’s management and stockholders, in exchange for all those campaign donations they might.
11
AARP has a caregiver policy program that aims to give relief to caregivers in a number of ways, including financial, since not everyone is lucky enough to have someone who can take off work to help care for them.
I was disabled by a different disease that put me on Social Security Disability for more than two decades. But I had no one to take care of me. When I had to file updates for my condition, the forms always asked who did the cooking, housework, etc. My answer: I do it whenever I feel well enough. Otherwise, it goes undone.
7
But then the problem becomes, oh well, if you can do it, why do you need SSI. There’s this idea that if you can do minimal things while on disability, then you can work. What people don’t realize, is that when you have no one to help you, either you do it, whether it’s cooking, housework, bathing, etc, or it doesn’t get done. Either you cook, or you go hungry, either you clean you house as much as you can, or you live in filth.
I’ve been a victim of our healthcare system, I was run off the road by a drunk driver in Alaska, my passenger was killed, I was left with my left leg broken in two places, and my right femur, my right hand, shoulder, broken, lower back ruined. I was in a wheelchair for 3 years, lost my state job, all my pension money, and my newly acquired (at the time) my $2,000.00 initial investment in Microsoft when they had their IPO, my home, car, self respect. In a nano second I went from a high paying job, to a ruined life, that was in 1995. I’ve never financially recovered, and I never will, it been set back after set back, in 1995, I was given blood during a surgery and wound up with Hep C, the medication is $12,000 A MONTH. I had to get Abbivie to cover all but $5.00. None of the medical issues were ever my fault, yet I’ve been paying my medical bill since 1995, I will be forced into bankruptcy. As my 84 year old mothers primary care giver I have to take time off from work the upside, is FMLA, has covered me for well over a year, at least I can’t get fired.
13
@James Social Secuirity Disability (SSD) is different from SSI.
This article couldn't be more true. I speak from personal experience having been diagnosed with cancer on multiple occasions & handle it primarily on my own with my nursing background.
The problem described here isn't just limited to cancer but involves so many living with chronic diseases & medical conditions. Resources are becoming less available for those who need it the most. Medicaid recipients do have many more options than those in the lower & middle class.
The elderly who live alone struggle with chronic illnesses & finding help. Whenever possible, I help my neighbors who, in their 90's are dealing with failing bodies. Their children live out of the area. They can't afford taking more time from work & home care isn't always available (a shortage in this area) or affordable. I had another neighbor who, following a serious fall was discharged home. She had no children, & was dealing with a broken wrist, arm, & shoulder in addition to several vertebrae. In no way was she capable of caring for herself. I called social services to try & get assistance. Meals on Wheels had a waiting list of 6 months, & after an evaluation by visiting nurses, qualified for 3 days of home care for 4 hours. The rest of the time she was on her own. This isn't enough. Americans deserve better.
As the population ages out in the USA, things will only get worse.
35
If the lack of support during health care is bad for those who are married, well off, and have family members to help, what is it like for those who don't have those advantages? What if you don't have a spouse or family caregivers at all? There is an unspoken assumption that much of this work should fall on unpaid family and friends. At the same time, the number of divorced/widowed/never married singles is rising, the population is aging, the number of siblings in a family is decreasing, and the hours most people work is increasing. This is not sustainable.
46
I ended up taking 3 years off from work to care for my late mother 24/7 from head to toe and one more year, after she passed, to rebuild myself. Only one of my siblings helped -- giving me a three day weekend here and there to recharge. Now, it's rough for me to reestablish my career. I would do it all over again for mom, but I wish all the federal and state (and property taxes) I've paid (probably over $2 millions total) would have helped me more some but nope! Medicare, which my mother was entitled to after decades of paying into the system while she was working, is okay and could be way better and more compassionate.
Still, the American system is far better than those offered in other "first-world" nations.
4
But still less than other industrialized nations, just look to the Europeans, they seemed to have found a way to make these things available to their population, but the US supposedly, the richest in the world, can’t seem to provide healthcare to their citizens. Usually the party in control of congress will say we just don’t have the money, so we’re not even going to attempt a fix, yet we seem to have enough money to give corporations and the rich huge tax breaks that have ballooned the deficit.
As long as we have people in office like that, and as long as that party has supporters that believe that they will never need healthcare, then we as a nation will continue to have high newborn mortality rates, and we as a population will get sicker and sicker.
14
@Hopeless American "Still, the American system is far better than those offered in other "first-world" nations."
What exactly do you base that opinion on?
I can tell you that you are wrong. While the average life expectancy is rising in the other "first world" nations, it is decreasing in the US. Infant and maternal mortality are higher in the US than in those countries. And health care in those countries far less to get better outcomes.
You should take off your "American exceptionalism" rose-colored glasses and inform yourself as to the fact that the American healthcare system is terrible in comparison to most "first world" nations.
16
@emr
"And health care in those countries *costs* far less to get better outcomes."
7
This article brings back painful memories for me. My brother died almost a year and a half ago from cancer. He moved in with me during his treatment which turned out to be his last 6 months of life. I was his sole caregiver. I gave him his meds, I tended his wounds, I drove him to chemo, radiation and doctor appointments, and camped out with him when he was in the hospital the last month he was alive. His insurance didn't cover any home health nurse visits that were worth even accepting. It was physically, emotionally and spiritually exhausting. Like so many caregivers, my health suffered afterward. I'm still trying to climb out of it.
26
@Libby
Hang in there, Libby. One day you will be able to look back and say to yourself "I know I did everything I could", and be proud of that. That knowledge will be a source of strength. Those who have done what you did are a community of exceptional, spiritually mature persons.
12
Your brother was lucky to have you.
3
Thank you for this necessary piece to help raise people’s awareness of the lack of support some people have when facing serious medical problems—not just cancer, but debilitating conditions of all types, including disabled children, mental illness, aging parents with various types of dementia, surgeries gone wrong, etc. In America, even if one does have health insurance, and even if that coverage is adequate, caregivers are not. The burden falls on friends and family, and one’s own personal savings. If the person stricken with illness, or disability has friends and family who are able and willing to travel great distances if necessary, and can handle the financial burden of loss of income due to time off of work, they are very fortunate! I was injured by a recalled hip-replacement “revision” surgery, causing me to walk on crutches unable to bear weight on my left leg for one year. I was a single women, gainfully employed for 30 years as a Registered Nurse, with a mortgage, and suddenly, one day I could no longer work. There was no safety net for me; I lost my health insurance within a year because I could not work. People could not take enough time off work to help me for the year I needed help. I depleted my retirement savings account paying for round -the -clock caregivers. What else could I do? No social services were available to me because I owned a home and didn’t qualify as financial “needy enough”. I almost ended up on the street. America can do better than this!
21
“Watching and monitoring and caring for the ill in their home is just as much care as doing the same in a hospital. We are willing to pay a fortune for the former, and almost nothing for the latter.” That’s for sure.
15
This article is unusual in that it is written by a man. Women have always known about the sacrifices caregivers make. Maybe a man experiencing the same thing will draw some attention to it.
38
@msd
Well said. The roots of this discrimination is “coverture”, which was the status of women when the US was founded. Women were invisible and nameless, regarded as worth less than slaves (ironically so). Coverture still exists in plain sight but is still invisible. Go research it. It’s the root cause of many of our society failings.
Thank you for bringing attention to this topic. My sister and I recently took "sabbaticals" from our lives to care for our parents at their home until they died (Mom had a brain tumor, Dad leukemia). We left our respective homes and lived with them 800 miles away for 1 and one-half years. We were fortunate because we could. We are both in our 50s and work full-time, but had understanding bosses/clients and managed to keep our jobs doing just enough to get by. We had understanding families, and enough money to get by, earning about half our typical incomes. We were fortunate because we had the knowledge and experience to manage the medical stuff and the support of our relatives and our parents' friends, church, and neighbors.
It was a privilege, and it was life-changing; neither of us would give up a day of it. But it was SO difficult and sad and intense and, at the end, scary. We jeopardized our careers, our marriages, our friendships, our health, by being absent and stressed. We coped in some pretty unhealthy ways at night when blessed paid caregivers took over. We fought significant depression when it was all over and we returned to our lives.
I don't know if there are good solutions to this problem, this need. I am heartbroken for all of the people out there who don't have people to assume this role. What do they do?? Everyone seems stretched too thin already to give more support to another group: Caregivers.
19
@Nancy Bless you, Nancy!
2
My husband was diagnosed with Parkinson's when he was 41. By the time he was 50, he was disabled and by 58, I had to be at home with him because of Parkinson's dementia. He'd continue to have health insurance, but I wouldn't, so we moved to Ecuador for 6 1/2 years, then came back to the US. We couldn't afford for him to be in care, so I continued to take care of him. The whole process was difficult, stressful, and ridiculously expensive, even with me doing the lion's share of the care. We had lovely friends and family who jumped in when they could, but life continues when people are ill and Parkinson's isn't an illness people recover from.
11
Referring to the resources--human and capital--that enable the diagnosis, treatment, prognosis, and rehabilitation of a patient's serious illness or chronic condition as the "support system" is not unlike calling the efforts required to bring up a newborn into young adulthood "ordinary care" of children. If asked what they need to live, fish would never think of water. Could it be that without the "support system," there would not be diagnosis, treatment, prognosis, or rehabilitation of any patient's medical condition whatsoever? If so, then the gaping hole the writer referred to in our healthcare system may be more essential to patients' survival than water to fish.
4
I am here to remind folks that this is a lifelong occurrence for people who have loved ones with severe mental illness, who are limited in their ability to function independently but who are overlooked among people with chronic conditions.
People with cognitive disability have group homes to live at; not so for mentally ill loved ones, unless the 'group home' is actually prison. There is no respite care for a loved one for whom treatment is ineffective and whose suicidality, psychosis, or paranoia are constant, except for the 72-hour involuntary hold.
Our loved ones' medications are expensive, our loved ones behaviors make them vulnerable and require extensive interventions with the public while making them difficult to love sometimes. My loved one with schizoaffective cannot fill out a paper form- not a medical history, not a library card application, or a job application. The alternative to helping our mentally ill loved ones is most often to allow them to be homeless, since they haven't the ability to make a plan and follow through.
I look forward to seeing the systemic impacts of Washington State's planned mental health teaching hospital.
16
Even though I am a cancer survivor, I still refuse to donate to cancer research or autism research. It is obscene how much money they get for research and none of it reaches the patients!
13
@Kara You don't think that the results of research reach any patients? Have you not heard of new treatments being churned out for cancer? Why do you believe that survival rates have improved? It's because the results of the research *is* reaching patients.
4
A friend just died in France, and I have to say I am blown away by the way his family put their lives on hold, took leaves from work and never left his side for months during his illness. They were able to just stop working, folks! From important jobs. Does that even happen in the US? One can't help but admire the values on display.
41
You’re right, because it’s earmarked as research money, they research cancer, they don’t spend money on patients, the idea is to find life saving treatments, ergo, the name cancer research....
Because they have a far better healthcare system, and by the way, you don’t see people in France, protesting to become MORE like the US.
7
@Grevillea you can’t get fired in France for taking time off for caregiving.
8
Tell me about it. My step-father currently has lung cancer and my grandmother is 95 years old. My mother is their care-taker at the age of 60 (after having taken care of a sister who died from breast cancer and a father who passed away as 89 after many years of decline) all while trying desperately to hold on to her job in IT for a major company. Yes grandma gets home health aid help, but that's only M-F and highly unreliable. I am helping where I can as is my step-brother as are their friends, but everyone is exhausted. She will take FMLA soon but its hard to time that for when its most needed.
But what can we do? Almost everyone at work I know is a caregiver of some sort, either for children, or for parents, often for both at the same time.
One thing that would help is to have some sort of non-ambulance way to get to appointment for someone who needs a bit of help. An ambulance ride costs 1,750 in my town and there is nothing more low-tech. Need a medical Uber.
14
@NH The term for the "medical Uber" that you seek is called "Non-emergency Medical Transport" and it is free for Medicaid patients with no alternate transportation.
Catholic Community Services also runs volunteer driver programs for folks who need it, which serves many functions for its recipients.
Check with your local Area Agency on Aging and Disability or call 211 for more info on resources.
11
@NH Dial-a-ride is also available; in my county they have a weekly scheduled medical run into the nearest city that goes to all the large medical practices. Unfortunately Dial-a-ride is restricted to seniors and disabled, those not disabled yet and the young cannot use it.
2
MOST people are not MEDICAID recipients. If you have a home, you qualify for zero governmental assistance. You have to be homeless to get free anything in this country. What about those of us who have been gainfully employed and paid taxes all of our lives? Where is the government assistance when we need a ride to a doctor, or a caregiver?!
12
Had to give up my job because in this case I was a caregiver for my girlfriend who is a single mom. No protection for me under FMLA or any other program. My employer is claiming I quit my job and so I don't even collect unemployment.
10
That’s exactly right....If you are not a primary blood relative (husband, wife, or parent) you do not qualify to take Family Leave under the FMLA. You cannot take time off of work to assist a non-relative at the risk of losing your job. That is a huge problem.
13
@Marilyn Liss
Your post is again false. Blood relation is not required for the FMLA. For an example, an adopted parent counts. So do grandparents or grandchildren of others if there is an "in loco parentis" relationship.
I had a cousin who died of cancer in his 40s a few years ago. He was single, never married, no kids, & had a skilled labor job that he was unable to do anymore. He lived for 8 months after diagnosis, mostly too ill and frail to do a lot for himself.
During that 8 months, our large extended family pitched in to help. (His elderly mother was totally in denial & frail herself. His sister lived far away.) A physically strong 80-something retired uncle took him to doctor appointments, which required pushing the wheelchair and lifting. He also handled all discussion of medical issues with doctors. Another elderly aunt handled all his bills, paying a lot of them out of her own bank account & quietly fundraising among the family when needed.
Lawyer-cousins handled paperwork and calls with Social Security, his ex-employer & insurance companies--and ultimately with doctors, persuading them to write off their bills.
Then other cousins pitched in to get him a new phone & iPad, so that he was able to stay in touch with people, read & watch videos. Cousins also brought meals, fetched medications, visited, & pitched in as needed.
Our goal was to allow him to concentrate on his treatment and pain management, & to keep him from being evicted & the utilities cut off. It really took a village--what do people do who don't have a lot of retired but able family members, & gazillion relatives?
Let's just admit that desperately ill people need help, & their families too, and start there.
49
You have a beautiful extended family!
2
Dr. Carroll has identified a problem but he offers no solutions. The examples he gives are conditions for people with a lot of privilege and no worries about being able to afford travel to doctor's appointments, parking fees, motel stays, drugs, time off work lost wages, meals, and many other expenses in conjunction with a family member or friend undergoing long term hospital care. Everyone not privileged already know about all these hardships.
21
You are completely right.
I had to do cancer treatment solo -- no one with me at all at any stage of the way, except the young kids I was raising as a single parent. Thankfully I had leave from work while I was undergoing treatment so I could get back to my job; just as thankfully I had savings; but no one else could break away at all, and it was both difficult and excruciatingly lonely.
12
You are right on the money. Our company offers non-insurance benefits to companies and we recently added a Caregiver and Worklife services benefit to our offering and are getting tremendous feedback. Your frien is young but think about all of us baby boomers whose parents are still alive but living somewhere remote. A caregiver coach can help the family make important decisions and the worklife services allows simple chores to be scheduled, especially when one parent is alone or both are not able to do certain things anymore.
I think more companies (hopefully) realize the value of this for their employees.
4
Having recently provided "boots on the ground" caregiving for almost 2 years, with all the attendant issues from constant travel, to lost income, to interpersonal disruptions, etc., an impact seems to be missing -- increased health issues for the caregivers. Anecdotally, I certainly saw an unusually high prevalence of acute, stress related diseases that surfaced AFTER the cancer patient went into remission or died.
26
It's long past time for caregivers to form their own union. Fragmented into families snd small groups of friends and relatives, we are individually helpless in the face of:
- drug companies charging thousands of dollars for a pill whose actual cost is only a small fraction of that,
- rigid medical establishments that use outdated procedures when newer, easier ones are available,
- insurance companies who require tremendous effort to pry loose the funds that are guaranteed in the contract
- nearsighted inability to search out and adopt alternate treatments or good practices from other countries.
There's more, but this is enough. And the comments below barely touch on the caregiving effort required for dementia.
What might my union do? We can all think of many things about our medical system that we'd like to see changed. And in spite of the denials of Big Pharma and Big Medicine, I believe many are possible. The question is how we caregivers can get together and have enough muscle to begin making changes.
9
While long term care insurance can not apply in all the cases discussed in the article and comments, it does so for many such cases. Such insurance has become more expensive and harder to obtain but many Americans who can afford it and that includes middle income people had the foresight to obtain such insurance in some cases to replace life insurance. Yes more needs to be done but there should be government support to keep such policies affordable.
5
@BC The experience and needs of care-givers vary. Long-term care insurance does not cover the chronic long-term care that a loved one with severe mental illness requires, as it does not exist and any care facilities that accept them are rare.
Our loved ones with severe mental illness may be similar in behavior to an Alzheimer's patient, not need our supervision every minute of the day and may be capable of a great deal (with support)...
but quite unlike an Alzheimer's patient, there are no long-term, home-like places for our more disabled loved ones to have the intensive support they require without being in a prison or a psych ward where the maximum stay is usually four weeks. I think more home-like places would mean fewer in prison and wards.
4
Those are just the immediate effects. Consider mom under 50 with breast cancer, which usually arrives just when she's ready to go back to work full time. Instead, she has to deal with the chemobrain fog...then she's 55 and who wants to hire an oldie that's on meds? She now has a spouse who'd like to retire, but she's the reason they can't....if as many do, they divorce, and she's up a creek financially as she hasn't worked long enough to get days off for appointments....
cutting to the chase..the spousal IRA is ridiculous. The limit needs to increase so that those who can't go back to work due to medical can at least eat cat food in retirement as they pay all the bills that come with being a survivor. The high deductibles are ridiculous...punishing people for genetics is not civilized.
90
@ARL well, this Congress seem to think getting sick is your fault. So, they are quite happy to make you pay.
1
Many others have commented aboud the care requirements of Alzheimers. And that these burdens ceaselessly escalate as the disease progresses
There are many collateral burdens that are not immediately obvious.
—Friends disappear as it becomes painful and embarrassing to try communicate.
—Well intentioned relatives may quibble about the choices made by those responsible for care.
—Few doctors specialize in gerontology and memory care.
—There is essentially no effective treatment.
—The loved one often cannot appreciate the caregivers burdens. They are frequently uncooperative, and sometimes even abusive
—institutions (banks, insurance companies, long trerm care policies) usually have agendas that frustrate caregivers who are already stretched to the limit. Policies are written by people who are clueless about the challenges of dementia caregiving
— no one is ever prepared for becoming a dementia caregiver.
You don't know what to do;
you don't know how or where to learn what to do;
you don’t have time to study the issues
the needs of patients are often so unique that caregiving suggestions seem off point;
the needs of the patient constantly shift so that yesterday's lessons become obsolete;
Dementia patients are often good at hiding their disabilities, so that they seem more able than they really are when outsiders encounter them
Friends want to help but are usually inept
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@Ardy Hagen
Caregiving for individuals who have dementia is expensive, whether you pay for it with money, time, or both. Further, it is emotionally draining, for all of the reasons that you have given.
Many want to be at home, where the caregiver is "on" 24/7/365. For those who complain about the high cost of longterm care, including assisted living arrangements, and the frequent deficiencies in those systems, including the revolving door for caregivers, consider the poor training and compensation that many receive for this job.
We're living longer. We will need more caregiving in the future. We are not investing in it now, and we will pay later.
19
@GA Foodist
Thx for your comments
Sadly imo the various probkems are so diverse that training itself is would be a confounding problem even if we devoted resources to the problem.
Also, it is not clear whom we would train, or who would do the training. I have to say that in my experiece even medical professionals often have have only a shallow knowledge of practical problems and solutions.
These skills seem best learned by actually living with the problem, rather than an exclusively curriculum based approach. Oddly, i am reminded of alchololics anonymous. The efficacy of these groups comes in large measure from hard won real world experience... providing not only experienced advice, but also informed compassion... and sometimes times a realization that others face even more difficult challenges
On a side note, i kind of wish someone would do a situation comedy on this topic. The situations one encounters can be bizarre
8
Yes. Yes. Yes. I am the long distance caregiver of my mother, who has Parkinson’s and related dementia. Every single thing you wrote is exactly true. Especially the part about hiding one’s disability. My mom can somehow find a way to spout out rote comments she remembers that are marginally relevant to a conversation that make her appear to be more cognizant than she really is. Even trained medical professionals will tell me how great she is doing! But anyone who spends time with her knows that there is zero depth to her awareness of the world. It is exhausting to manage her life and her often combative resistance to being helped. She requires a team including round the clock aides, my elderly dad, a drop in RN, physical therapists, and a small army of specialists to keep her life on track. And me, working essentially full time to complete all the medical and financial paperwork. Friends and other family? Poof! They disappeared.
16
But we don’t want socialism!
14
@Zejee That is correct I don't want socialism or a federal government so large and intrusive that it removes freedom. Hire your care giver, be poor and medicaid will assist you, or suffer. Life is not always so easy.
1
@Zejee If providing for care is socialism, what is so wrong about it? Some would say medicare is socialism. Are we suffering because we have that?
5
Well then we need to stop subsidizing farms, and energy companies, we need to end FEMA, and other programs like flood insurance, no company will sell it to you for 120.00 a year, except for the US government will, oh it too is subsidized by tax payer monies, so yes, let’s end all forms of socialism. But if we did that, then people that voted for Trump, who are getting their soybean subsidy would go broke, the homes that were flooded in the Midwest, people should rebuild them with their own money, oh right, they can’t get flood insurance unless it tax payer funded, so yes, let’s stop all subsidies, let’s just not pick and choose.
Better yet, have an opt out of coverage, so that you can just opt out, unless you like giving you money to an insurance company that will spend money, to make sure they don’t pay your bills, believe me, I work in healthcare, and insurance companies do that all the time. But, while we’re at it, rescind the law that forces hospitals to provide care, if you don’t have government health care, or private insurance, you simply don’t get help. Or, if you get the help, but have no insurance, set it up so that you pay all the bills, and like a student loan, you can’t cant discharge it though a bankruptcy.
5
Dr. Carroll has identified a problem - what I don't see from him is a policy solution.
7
Boy, this is the hot topic in my life. I helped both my aging parents before they died — not full-time caregiving, but for fourteen years, driving up to their home (3.5 hours away from mine) to take them to doctor’s or dentist’s appointments, responding when my father’ lung disease crises put him in the hospital, coordinating various issues with their doctors and their retirement community, and keeping my more distant siblings informed. I am self-employed, and was glad to have the flexibility to head down East when necessary— but a single overnight run to Maine eliminated t1.5 to 2 working days from my week, and removed any income from those days from my revenues. When my boyfriend was diagnosed with brain cancer, I often accompanied him to neuro-oncology, MRI, and chemo appointments, and tag-team helped with his home care in his last months before he died in 2017. There is no financial compensation for caregiving work like this. I’m still struggling to recover financially from helping, and now am living with the effects of the divide between those who act as caregivers and those who don’t. I have no regrets about my parents; I’m not so well-disposed to my boyfriend’s brother, an MD, who explained that he didn’t show up and help because he didn’t want to lose his income. I am even more acutely aware of the costs of caregiving, and wish this issue, which becomes more immediate to American families every day, was treated with the attention it deserves.
42
Dr. Carroll alludes to this, but it needs to be said explicitly that cancer is not the only presenting problem when it comes to caregivers. People with lupus, RA, Crohn's, and other disabling autoimmune diseases often need continuing care due to operations, infusions, sometimes transplants, injections, etc., and this need is permanent. In other words, a person doesn't go through months of treatment and go into remission (as a general rule). In addition, immunosuppressants present an additional risk that limits where and how such people can receive care.
12
My daughter is the sole own of three small businesses from which she manages to eke out an existence. She is responsible for and participates in their day-to-day operation. Her husband, diagnosed with pancreatic cancer, needed round-the-clock care but she was not in the position to pay for day care providers. Instead, she tried to run her business from home while, at the same time, caring for her declining and dying husband. Her children lived 5 hours away, but came on weekends to offer assistance. I am elderly, retired, and reside 400 miles away, but spent approximately 8 weeks at her home trying to help in any way I could. We understand the impact and sacrifice of caregiving for a loved one.
Caregivers suffer financially and emotionally during the long term care for someone with cancer, any other debilitating disease or, in this case, a horrific assault. There is no safety net for them. While Hospice provides some types of care, it is inadequate for those who juggle jobs and caregiving.
9
As our father's health declined (over a 6-year span), my sister and I were on call all day and all night. Though he lived in an incredible assisted living facility in his final year, there were still many gaps that my sister and I filled. We loved him, so of course we'd do everything we could: driving him, attending doctor's appointments, coordinating care, rushing to the ER, advocating for him through the maze of medical care, hospital stays, discharges, medications and skilled nursing, and spending time with him. My sister and I wondered how patients without advocates by their side could understand what was happening and be well cared-for. Doctor's visits in the hospital are brief and questions need asking. Many details can slip through the cracks. This was exhausting for all of us. I'd drive home at 10:00 at night, completely spent and knowing that I needed to get up early the next day to cram in some work while my sister took the morning shift. Then I'd head to the hospital so she could go to work. I'm self-employed and had to relinquish clients and projects--and much of my income. I have no sick leave, no FMLA. My sister burned through her medical leave, vacation time and took leave without pay. Informal caregivers need to be recognized and supported.
27
I am 73, divorced, no children. I have lots of friends, but it's not obvious who my caregivers will be if (or should I say when?) I get sick and require lots of support. I took care of my mother for seven months before she died, and I've been a hospice volunteer, so I know the effort that's involved.
Friends might help but well, only maybe. It's not that they're not loyal, but at our age, they too have cancer or Parkinsons or heart disease or Alzheimers, or are taking care of a spouse with those conditions. We really need formal services to support us all.
55
I agree with this expose and the examples of the vast shortfall in our system. As a Registered Nurse, I can’t help but add that the bedside nursing that was available 30 years ago is also a thing of the past. Most patients are over 60 years old or have a life threatening, possibly post op condition in the hospital nowadays and require more care, by a skilled professional. But “less is more” in corporate America. And you will get less. More dollars go to the facade of patient care than to the actual care of patients. Most people don’t even realize what we’ve lost. It’s not their fault. But I so wish we could devote more $ to the bedside care needs instead of the Administrative window dressers. Competition? Not happening: everyone sees everywhere how each system is being bought out consecutively. It’s a sham. We almost already have a single payer system: and it’s not for the people. It’s for the profits.
32
We may have the best health care "available" depending on your financial situation, but our healthcare system is clearly dysfunctional. I just spent three months with my 93 year old mother as she went back and forth from hospital to rehab, ended up in hospice, and passed away the next day. While I was fortunate to be able to spend many hours at my mother's side, I was not her primary caretaker.
The reality is that the primary caretakers in hospitals, nursing homes, assisted living communities, and at-home care are, in essence, the most underpaid, under-trained and under-appreciated -- the aides. They spend way more time with patients than doctors and nurses do and, if you're lucky, you get someone who is attentive and empathetic in the way you want for your family member.
If we really want to improve the quality of our healthcare system, we need to invest in the people who actually spend the most time with those who need "care" and provide them with training and pay commensurate with their responsibilities. After observing the healthcare system up close, this is an essential - and undervalued - component that must be improved to ensure that our loved ones receive the quality of care they deserve. This will also give family members some relief from the overwhelming caretaking duties that they are not physically or emotionally equipped to handle.
26
I haven't read all the comments, so apologies if someone else has provided this info which may be of interest.
Canada does not seem to have been covered in the survey of other nations, perhaps because it had no such program in 2011 when the quoted OECD report was published.
Canada currently provides paid leave (through its Employment Insurance Program) of 15-35 weeks, depending on the circumstances. It pays 55% of average weekly earnings up to a current maximum payment of $562 per week. This is a statutory program with both employers and employees contribute through payroll deduction.
Further info:
https://www.canada.ca/en/services/benefits/ei/caregiving.html
16
Hillary Clinton had specific plans to address the needs of caregivers, not only those dealing with cancer patients but those who cared for parents, spouses, or children with any number of conditions, from mental illness to autism to dementia to physical disabilities.
This is the first time since the 2016 election I've even seen the issue brought up on a national media site.
73
@Karen That's exactly what I was thinking! I LOVED hearing this element of HC's platform. It's too often assumed that women will do this work unpaid, often for one after another family member, for years... and then live in poverty in their own old age, because that wasn't "real" work and didn't accrue Soc. Sec. benefits.
19
Having been in both caregiver and care receiver roles as a single person I know how very hard it is. And I have found that if one has only a small circle of friends and no family pretty much all the caregiving has to be paid for. This is something very poorly handled by hospitals discharging patients. Their solution is to put people into rehab facilities which are pretty much the seventh circle of hell. The patients are 2-3 to a very tiny room. Conditions are not always very sanitary. If one needs physical or other therapy it's difficult to get to and from treatment without paying extra for it. Facilities for exercise, etc. are generally not in the rehab facility. And then there's the social workers who are overwhelmed and have few resources to use in helping one to make a transition back home. Insurance covers some but not all. And most long-term care policies don't start coverage until after 90 days. If you are single and you don't have a three month nest egg to pay for care, you are sunk.
24
This article needs ongoing followup.
Americans have no idea what a mess our healthcare system is until they get caught up in it as a patient or as a caregiving family member/friend. It is unbelievably expensive, fragmented, confusing, and isolating, and isn't much of a system at all.
As a delusional culture, Americans think it isn't going to happen to them--like unintended pregnancy--until it happens to them. Politically, we don't like policy and planning. It smacks of socialism and denies opportunities for corporations, businesses, and investors to make money off people's illness and suffering,
Government policy & spending for the military spending is cheered. Policy & spending for medical care is resented and begrudged, esp. by the 1% and GOP. If you are sick, it is your fault, you deal with it, and don't whine or bother others with your problems.
So, you suddenly deal with the horror of the disease and the even more frustrating grind of living through it, with a lot of guilt about how you are disrupting so many lives.
I lived through more than 2 years of surgery, chemo, and radiation from metastasized breast cancer. At least my husband and I were retired, because managing and dealing with my cancer became a full-time job. But I really worried about those patients who were so alone—how did they ever manage?
Our "system" adds to the stress of an already stressful situation--for patients, family, friends, and medical staff.
What do other countries do?
190
@PB--I like the quotation marks around the word "system" a lot. Whatever we have for health care, it's hardly systematic.
5
@PB....”what do other countries do?”
As 16 year retired American expatriates my wife and I moved to France for several reasons including the superb single payer health care system that is the pride of Europe.
Americans have been brainwashed by our government into thinking that health care is just another commodity we have to fight for through our employment or by any means necessary.
Health care should be a right, not a privilege!
12
@PB,
"Americans have no idea what a mess our healthcare system is until they get caught up in it as a patient or as a caregiving family member/friend."
Exactly. Most Americans don't even know what their insurance does and doesn't cover until they actually need it.
But even Paul Krugman repeated the fatuous claim that "most Americans are happy with their employer provided healthcare". What does that mean? Most employed Americans are healthy. Are Americans who become too sick to work and in the process lose their jobs and then their insurance happy? Are the people with chronic medical conditions who have to choose jobs based on how good their medical coverage is happy? Do most working Americans know how much that insurance coverage is costing them? Do they enjoy working for companies that decide for them whether or not to cover birth control or abortion?
The claim that most Americans like their insurance rests on the fact that we are largely ignorant of what we are paying, what is covered, and not worried about becoming too sick to work and losing that coverage. In short, it's an illusion based on ignorance and denial.
19
Very good article. One question about a photo -- why are their kids without shoes while walking with the dog on pavement? I can potentially see barefoot (though the boy is literally watching his step), but the girl has socks on. Seems odd. Makes me think of the kids, the circumstances behind the photo, and their role in/response to their father's sickness.
5
Curious you missed this while practicing pediatrics all these years.
Spending money to support others peoples illness and care (and hardships i general) is unpalatable to many, until it is their or their family friends turn.
And so it will go until the masses have had enough.
And then? Pick your favorite historical analogy, and guess.
11
Almost 30 years ago I required major surgery. I was divorced with a young child. My ex-husband helped, friends helped, some coworkers helped. I paid someone for help that I fortunately did not need. My mother was incapable and my father had died. And I needed no follow up treatment. Lost a couple of months from work and then lost the job. Economically fell behind for many years. It could have been much worse.
54
And what if you don't have caregivers? I would argue that those of us in that situation are even worse off. When I was diagnosed with cancer as a single, self-employed person, the company I was doing work for at the time had zero sympathy and dumped me pretty quickly. Of course the insurance company tried to deny a lot of things they clearly should have covered.
Our healthcare system is a nightmare for everyone.
175
@Tasha A lack of volunteer care is a problem even with conditions that are not life-threatening or serious. For example, a routine colonoscopy requires a "responsible adult" volunteer to transport the patient home after the procedure, and in some cases to wait around during the procedure. If a volunteer is not available, the patient won't have access to that essential screening.
Also with many kinds of minor surgery, which used to involve a hospital stay with nurses overseeing initial recovery before the patient went home. Now they're an outpatient "procedures," that send patients home right after surgery, and rely on the patient's own volunteer staff to oversee the recovery.
The increasing reliance on the patient's own volunteers to provide services nurses in hospitals used to provide surely produces large cost savings, all of which goes to the appropriate executives and shareholders. (Our medical-industrial complex is focused on profit, not patients.) But it creates serious problems for patients who either lack family and friends to volunteer, or whose family and friends can't afford to volunteer. And as jobs with benefits give way to the "gig economy," fewer people will have family and friends who can afford to volunteer. They will consequently be denied needed care.
The reliance on volunteer support that's increasingly hard to come by is just one of many ways the health care system fails patients in its relentless quest to increase profits by cutting costs.
41
@Ted Great points, all so true. It brings to mind a somewhat ridiculous story of one medical procedure I had to have, where they required someone else to take you home.
The first time I had the procedure, I just...left. On my own. Which was great - I had had enough stuff done by that point that I knew I bounced back quickly and was fine to drive, etc.
The next time, they watched me like a HAWK. Followed me down the hall. Wouldn't let me leave. I had to call a friend who had a local friend, who then swung by and pretended to be my ride home. After which we left, I thanked him profusely, and parted ways. It was all a bit panic-inducing and completely unnecessary. So to your point - yes, what's a person to do in such a situation if there's just NO ONE available? It's not such an unfathomable concept.
As an aside, re: the gig economy, reading tonight about the attack on the ACA (again!) made me think of how much the gig economy is growing. One of the last large companies I worked for, HUGE tech company, the majority of us were contractors with no benefits. As more and more "regular" jobs disappear, the ACA (or lack thereof) will impact a lot more people. Which might in a way be a good thing, as then more people will realize that it's not just a few of us clinging to the ACA for dear life.
24
Thank you for this piece. I urge you and your readers to join our fight for paid leave and make sure it includes time not just for parents of new children, which is crucial, but also to care for your own or a loved one's serious illness. As you point out, caregiving isn't a nicety, it's essential for recovery. Family Values @ Work (familyvaluesatwork.org) is a network of state coalitions that are winning these laws in multiple states and working with partners to get Congress to pass the FAMILY Act.
54
This is what a purely profit-driven Ferengi-inspired healthcare system looks like.
Cajoling for pre-approvals, fighting when something isn't covered that should have been, providers and hospitals negotiating over every procedure, bedside visit, every pill. Not covering many things that are out of the primary care stream.
The US spends more per capita on healthcare, by far, than any other industrialized country. You'd think we'd have the best outcomes. You'd be wrong. So much money wasted going into the pockets of companies and executives who aren't part of the actual care giving.
Of course, the market has an answer for that. For just $$$ per month, you can buy private supplemental insurance to help cover that.
10
Should I receive a cancer diagnosis I’m done. I lack the money and caregiver support to obtain treatment, even if desired.
13
@Steve Singer I was thinking the same thing. I have for many years. I am now an old, I mean a senior, However I am a caregiver and there will not be anyone to care for me if the time comes. I fully expect I will be one of those old homeless ladies on the streets, walking coffee shop to coffee shop, trying not to look homeless. Yes Medicare will cover my treatment, and my supplement under Covered California is nothing. Being ill is expensive, so live will become hard again, remember not to judge others, you do not know their story
8
@Margie Steele-
Being ill is isolating, crippling and ruinous; without relief or escape save the grave.
4
It seems counter intuitive that in a country were patriotism is highly valued that unlike the rest of the G8 they allow fellow Americans to be put in a position were they must often choose between their own mortality and bankrupting their families. Like respect patriotism is something that aught to be earned by the country that demands it, otherwise patriotism is just a soft form of bigotry that we allow ourselves either by accident of birth or were we find our feet planted.
4
It gets worse. Millions of mentally disabled adults are cared for by their parents until their death. States barely provide any services whatsoever for adults. Day services programs for those "lucky" enough to have them, run from 9am until 2pm. The U.S does not even provide tax relief for all this "unpaid" labor provided by families. Medicaid only delivers 14 hours per week in assistance for a home health aide. Respite care in my home state is 20 hours per month. Yes, one Saturday evening movie a week. Maybe time for an ice cream. If you have any money left at all. Of course, you are blackmailed with the option of placing your loved one in an "intermediate care facility". That costs the State and Medicaid twice what the cost would be for fully supporting a person in their own home. But, the nursing home industry has a "lobby." It is really hard to organize people who literally have no voice. Or, their desperately struggling families. P.S. As the good professor already knows, it is impossible to even find a psychiatrist for treatment of adults who are intellectually disabled, most with co-morbid conditions. Do you think money has anything to do with it all? Need two guesses?
11
Sigh, another overclass paean to solipsism. It seems people can somewhat understand what it is like to be in someone else's shoes or it has to happen to them or someone close to them before it can be even imagined.
3
so imagine a healthcare system that did not require primary care doctors to hire multiple people to handle billing for a myriad of different insurers. Imagine a system where little or no money changed hands, imagine how many workers from each office who would then be available ( or at least their salaries would be available) to provide the supportive care that our disabled and chronically ill people need. These are the disadvantages of our current system. wouldn't it be great if there were just one ( or two ) healthcare insurers in every area so that forms would be uniform, and the excess savings could be spent on actually providing more care ( and maybe even a cut to premiums?). just imagine such a plan and the benefits that we as a society might accrue, giving workers meaningful work instead of bean counting.
11
Your article's importance cannot be over-emphasized, as we routinely take 'caregivers' for granted...but without the support they deserve. But, to be fair, from stating a need...to filling the void, there is a stretch. If there were social justice in this world, some support for these forgotten 'heroes' would already be at hand.
3
It does not have to be anything as serious as cancer. With little kids who have issues that require constant care, parents have to take turns to take time off from the job. A friend's son is autistic, ultimately, she just quit her career as her husband's pay scale was better than her. Companies that can offer insurance to their employees can easily offer slightly additional pay for a trusted professional caregiver. We do not have that in the United States. Reliable people who can drive a person to and from appointments, help them settle in at home and give a break to the family members who are 24-7 involved in taking care. It's not just the hours at work lost but the emotional toll on close family members
9
Well duh. This article discusses a reality well known to many many people. The author is male and usually it is women who are expected to pitch in, and do. For pediatric patients the assumption is that it’ll be mom who is there, and I guess his pediatric patients usually don’t go through years and years of dementia. Guess who retires early to take care of aging loved ones.
14
@mary I am surprised Dr. Carroll is not aware of this issue until now. Although most kids are healthy, the ones that see their pediatricians often have long-term healthcare issues, including developmental ones. I am on the opposite end -- a geriatrician -- and we talk about caregiving issues regularly. You're right that most of the time, the duties fall to a woman but increasingly, I have also seen men take up tasks like bringing their mother to an appt.
1
There is a looming shortage of caregivers as the baby boomers age. And there are not a lot of people willing to do the nitty gritty of caregiving ie diaper changing. How about work visas for caregivers from other countries?
4
@Isabel Wyatt
Great idea. Just that some people seem to think that there are a lot of young American citizens willing to do this work. Ever seen any young folks who think of this as a career path? These are very hard jobs, physically and emotionally, and not paid well. Ironically, high rate of injuries also, then they can’t work...
AIDS did not go away. There was no one to help.
Or to listen.
Caregivers. This was not going to be a vacation. This was not going to be just pop a little pill.
Many people can pop that pill and they are fine.
For some, the piggyback diseases are daunting. Full-blown AIDS is more than you can handle.
Avascular necrosis, bone death, can require care. The pain meds are in the kitchen, but you're in bed. And you can't remember when you took the last one anyway. The forearm crutches fell on the floor when you went to grab them. You can't get in a bathtub. The pain from bone death is like being constantly beaten with a baseball bat.
I showered outside with the garden hose.
Your friends, your spouse, your helpers, almost everyone you used to know, are dead. All of them. You so wish you were dead as well. There is no one to talk to.
AIDS agency workers are not only too busy (they are constantly at public health clinics), but you quickly realize they have no idea what they are doing. Everyone might wear the same T-shirt, but it's a meaningless solidarity. They can't find the pills or the cure.
What caregivers.
The world shrinks. To one room. The food dwindles. Then, there is no money for food. You didn't know you had cancer. AIDS is not over. It just no longer has a voice. Caregivers are ghosts.
The helplessness is intimidating. You have to get to the clinic every other day. But how. I kept a loaded gun under my pillow. It wasn't for a thief climbing through a window.
15
This article told me exactly nothing new that untold articles, studies, editorials, and profiles of women – who perennially shoulder the burden of caregiving for children, relatives and friends – could not. I’m happy the author was able to give of himself to help his friend, but the idea that he is only now looking at the debt that the burden of caregiving lays on the caregiver is astounding. Good heavens, has he ever talked to a mother?!
11
Oh please. I am a mother who has single handedly raised 2 girls, one with significant cognitive disabilities. Now I am dying from a Glioblastoma and 7 years ago I survived an aggressive breast cancer while working full-time through my treatment. To suggest that having a serious cancer compares to everyday motherhood is ridiculous at face value.
Sincerely,
Someone who has personally done both
If this is hard for people with family, now imagine if you have no spouse and no children, your parents are dead, and your siblings are in no position to help you. Really, care giving should we guaranteed. It keeps people in the workforce, paying taxes to fund the care, and it helps those who don't have family to pick up the slack.
God help me when I get sick.
14
As an expat living I Germany where I have excellent healthcare it is for me baffling why Americans are not on the streets in yellow vests with pitchforks and torches.
With perhaps with a few trillions spared from foreign wars and not building walls that fail Americans could finally achieve a system that works for all. When is enough enough?
39
@Robert Keller We in Europe are fortunate that we have universal healthcare and live in societies that value the needs of everyone as opposed to the unrestrained capitalism of the USA. As to your comment about the gilets jaunes, I would posit that if I were living in the USA, I would be frightened to exercise my 1st amendment rights when one sees how militarized the police forces have become. What is equally frightening is to watch how our "jupitarian" president, Mr. Macron has threatened our right to protest in France. Populism has thrust us into the arms of a ex Rothschild banker and a parliament for the oligarchy. My message to Americans is you MUST fight for your rights to good governance and the welfare of the people. Even here in "socialist" France, our safety nets are being chipped away by the oligarchy.
8
@jmc I become enraged that my country men and woman do not become really engaged in addressing issues like healthcare and especially gun control, after a few days of thoughts and prayers the tragedy quietly dies. Look at NZ, and looking at your history perhaps America needs its own version of storming the Bastille?
2
My brother has been staying with my husband and me almost 8 months now. He receives excellent care at the V.A. Hospital in Milwaukee. But he is also the first to admit that if he didn't have us in his corner, he would have died. He is incapable of caring for himself, get groceries, make meals, do laundry, clean and sterilize the bathroom toilet (another entirely different set of issues). He did not drive so every week it is an all day road trip to Chicago to Milwaukee to Manitowoc and back to Chicago in one day. Those 12-14 hour days were brutal, but not as bad as what my brother was battling.
We are in a position to help him financially but more importantly, time wise. My husband is retired and I have sick time from work which I can use towards an ill family member.
As one commenter mentioned, it's not so much the financial situation that is taxing, but the emotional and physical aspects that are taxing and borderline overwhelming. Besides my brother's cancer, he also is bi-polar. The mental health factor became more challenging and difficult than the cancer itself. Prior to my brother's cancer, I would have never imagined that illness being a cakewalk in comparison to his mental illness.
The one thing my brother never had to worry about or question was our love and loyalty to him. His health and illness was our main focus. Everything else took a back seat.
Many hugs and thanks to all of those wonderful caretakers out there. You rock!
18
My husband has been struggling for over four years with liver cancer which came back after a liver transplant. I am extremely fortunate that I have excellent health insurance through my position at a private university. Recently I have applied for the NY FML and can now take random days off when I need to accompany him to doctors appointments or just stay home when he is having a bad day. I do forfeit a days pay, however I am reinbursed partially from an insurance company.
That said, the emotional tool this has taken on me can not be described. I experience bouts of depression, anger, frustration and general malaise. Fortunately my husband is currently stable and able to care for himself, but I am absolutely terrified of what lies down the road....
12
In the rush to cut costs, hospitals routinely send you home to figure out how to fend for yourself. Two days after total hip replacement, I'm home ALONE. No family, one friend who was not working but who herself had disabilities, stayed with me for a few days. While I had another friend who organized my teammates to bring me meals a few times, basically, I had to fend for myself. Luckily my insurance covered a home health aide to come a few times. Single people without families have this issue all the time: which friend could I impose on to take off half a day to accompany me to my colonoscopy? Who could take me to the ortho's office following foot surgery? If you are living on a fixed income, you would be hard pressed to pay for weeks of having groceries delivered. Our nation has an army of uncompensated caregivers. If I got cancer, I'd probably just let it run its course and die.
12
While the article appropriately focuses on adults, the caregiver issue is especially acute for families with children with disabilities or chronic illnesses. In our case, we were caregivers for our son for 37 years. We had help from a network of families in similar situations (see "Family Voices")--a support network is of paramount importance for any caregiver. It's remarkable how little attention is given to family caregivers, especially since 1) they know the most about the person they are caring for; 2) it would cost billions to replace them; and 3) they could be so much more effective with a little professional support.
6
May God amply reward each care giver, and compensate them in the Hereafter for every financial, emotional and physical sacrifice they gave.
4
@Nadeem - Amen to that!
1
@Nadeem
There is no "God."
4
just another example of how cruel our so called health care system really is and they wonder why suicide rates are up
11
For us first gen immigrants, it is only friends.
6
One big help to this periodic caregiver would be to fix the insurance/hospital billing system. Let me take my relative to the hospital without having to worry that there will be 34 separate bills submitted to the insurance from one cancer surgery that will require my attention as they are disputed or declared out-of-network. All services provided by an in-network hospital should be consider in-network. Caregivers should be allowed to care, not work as insurance intermediaries. Just as important, rescue us from the super-specialization that forces us into the role of the medical coordinators. I am not a physician! Every patient with cancer should not be required to have a medical professional in the family to coordinate care! Why am I hauling around an archaic 3 ring notebook of med lists, test results, medical history and recent treatments? Because I am the only person who keeps track. That's just bananas.
37
@Anne
This is a very important commentary. It is frustrating and exhausting to track all the bills, in and out of network, approved end not approved items, procedures. etc. One of my spouse's last statements to me was about two nurses in his room at hospice.....he said, "There is a power struggle here as to what they can and cannot do."
He passed away four days after admission to a pre- approved hospice. More memorial donations were sent to it than the cost of his room. Within ten days I was billed for the cost of the room and care because it was billed in error to a non-hospice code. I had to argue with the hospice director to code it correctly as her employee told me that it was a coded wrong. Five months later when the person coordinating a grief service for those that died that year called to invite me I lost it. I told her she could help me by getting the billing straight. I had full coverage for hospice from my employer and a Long Term Care company as a back up. They would not change the coding from hospital to hospice. It was a nightmare. I regret suggesting donations to that hospital based hospice as a memorial.
No offense intended Dr. Carroll, but this article could only have been written by a man. This is what women have been doing for millennium, along with caring for the home, raising the children, and often now working full time. As the other commentators state, the lack of support for home care for any kind of major illness results in one or more persons essentially giving much or even all of their time and energy to provide that care. Increasingly, women and men don't have spouses or children or nearby parent they can turn to for this kind of support so we must rely on friends and social networks.
22
your friend was lucky to have support during the dx and surg. aspect of his illness. i think of all the people who live alone and have to navigate through such times on their own, let alone trying to get any kind of homecare put in place. everyone should have a patient advocate who is strong enough to ask for a second opinion or question an unnecessary test or procedure. your friend was lucky to have you but most do not.
4
Care-taking exacts not only a financial toll but also an egregious emotional and physical toll as well. I have not encountered a study that talks about the trauma involved in the caretaker's watching a loved one endure brutal modes of treatment of an illness such as cancer, which is punishing in and of itself.
Care-taking a loved one through the pain and heartbreak that accompanies cancer and its barbaric treatments, chemo and radiation, leaves one scarred for life. It is particularly true when the outcome is eventual loss of a beloved family member, although I'm sure it's there even if the loved one survives.
I am certain that oncologists, in all their wisdom and compassion, still don't fully understand what the side effects of their treatments actually do to a family in terms of both first and second hand suffering, perhaps until they experience it within their own families.
I say this with respect and gratitude towards those who do this difficult work. But I feel it's true.
The caretakers console themselves by remembering that we had the honor of bearing witness and helping our loved one at the end of his/her life. But the wounds we carry, whether physical or emotional or both, are indelible.
15
As others have commented, this story is not about a gap in the healthcare system, but about our lack of a social structure which would provide time off for medical treatment, assistance for episodes of medical incapacity, and support for those assisting in the treatment plan.
In our hyper-capitalistic world, these social necessities are labelled "welfare", and given no value, compared to corporate bottom line.
More broadly, public education, public transportation, public access to the internet, are likewise denigrated at the expense of "the private sector".
The simple truth is that if society is run as a business, those in charge will maximize profit - that is their job. That is why government exists in a social democracy - to rein in the excesses of capitalism, when valuing money above lives is detrimental to the common good.
Currently our institutions have failed to maintain the balance. The resulting carnage is in plain sight.
11
I write what I'm afraid will sound horribly self-pitying because it backs up Mr. Carroll's excellent article. My apparently fit husband suffered acute dementia as the result of a massive stroke. He recovered his physical strength quickly, but not his sense of balance or his mind, and this unhappy combination of strength and mental incompetence meant that he had to be watched every second of the day. Of course, I had to give up my job immediately. For the next three years, money hemorrhaged out of our modest savings account to cover high medical insurance (my husband was only 59 so not entitled immediately to Medicare) + I HAD to have some part-time caregiving help because I literally couldn't go to the bathroom without taking him with me. The agencies that send out caregivers charge a fortune. Disability income was too much for me to apply for Medicaid or other sources of help & way too little for the full-time private caregiving we needed. I had to drastically reduce my own healthcare coverage and daily living expenses, sell personal belongings, and exhaust our retirement savings. I won't even touch on the physical and emotional toll, beyond saying that during his occasional stays in hospital, Jeff was calmed with drugs — but at home I could only administer the minimum in anti-psychotics for fear of being charged with patient abuse. My darling husband lived three years after his stroke, and my only consolation now is that his long nightmare is over.
24
Last year, my husband died of complications from Alzheimer's. I had been caring for him for a long time, but the final year and a half took all my time and energy. I am a freelancer, but even working at home, it was almost impossible to get anything done. A Danish woman I was working with at the time was horrified when she discovered that the government did virtually nothing for him and gave me no support, financial or otherwise. Not even a tax credit. And don't get me started on the health care system. Despite a ton of education, I battled every moment to wrap my head around how to get what little help was available. Or who could help me figure it out. What a mess all this is. Like so much else in this saddened country right now!
18
I'm sorry Dr.Carroll, but your approach - writing about a problem that we cal all sympathize with but then appealing for some kind of "commonsense" solution is exactly why why our safety net is so full of holes, which threaten to get even larger if Republicans have their way.
The problem lies in your use of the word "we". "We" are willing to spend a fortune for the former, almost nothing for the latter. Who is the "we"? Businesses or wealthy individuals who can afford the best healthcare money can buy? The Family and Medical Leave act was passed over the objections of Republicans/conservatives who claim that the mandate would be too burdensome on businesses. These same objectors are also adamantly opposed to any kind of gov't funding (via a tax) of sick or caregiver leave, on the grounds that those are a form of socialism/communism/nanny state.
As long as the "we" in question footing the bill remains the individual businesses, nothing will change. Because those who have more generous benefits/better compensation are already happy, and many of those who don't fear they will lose their jobs.
There is no "we" and the problem is that certain people want to make sure it stays that way.
21
Sir, you ain't lie. I am caring for my mother who has had dementia since 2002. I am an only child and my salary pays for the care of two caregivers who work so I can work and I am the 3rd shift caring for Mom. outside of free workshops and YouTube, none of us are trained we are doing what we can. My Mom is a retired Nurse Supervisor, she makes too much via pension for poor care and too little for good (not great) care. I am exploring trusts but its expensive in many ways. I am operating without a safety net. If I get ill I don't know what would happen.
20
The same burden falls on those caring for a family member or loved one with a serious mental health condition. Our health care system offers few alternatives to care in the home except extremely expensive treatment facilities which are out of reach of most. Families are untrained and sorely lacking in the understanding of how to handle a mental health crisis. I am a mom to a young adult with serious issues. I understand first hand how difficult navigating our mental health system and criminal justice system is. And the toll it took on my other kids and my marriage. I continue to volunteer time with NAMI (National Alliance on Mental Illness) to help family members navigate the system and, hopefully, get to some of the resources they so desperately need. At a minimum, I am an empathetic ear when they so desperately need to feel heard.
13
Both of my parents had cancer, chemotherapy, etc. at the very same time. It was hell. As they aged and the disease took different twists it came down more and more that I had to do more and more of the attending. Basically my life was on hold. I loved my parents, no complaints, but it was very hard with little outside help other than sympathy. They are both gone now, miss them terribly. My career simply was eroded. Emotionally I will probably never really recover, PTSD perhaps. Financially, emotionally, it slays the caregivers.
21
Yes, all true, especially that the author's friend received excellent, state of the art care including a second opinion at a distance, which might have proved crucial as the tumor was not run-of-the-mill renal adenocarcinoma. A dear friend just went through 6 surgeries and a 6 week stay at Stanford for a rare tumor. He got excellent care and he's doing well, but the process just about exhausted his wife, two daughters and friends supporting him through it.
But excellent medical care is usually not available to many Americans today due to gaping insurance lack. Families, already beleaguered by the "fog of poverty" then faced with a catastrophic diagnosis of a family member, just go belly up. That we've blocked universal care access here for 90 years speaks only to the fact that just about 5-10% of us are acutely ill at any one time. Thus we can ignore what patients and caregivers face and are often defeated by, especially those who are poor.
Let's get Americans universal medical care access then caregivers will have a fighting chance to even care for their loved ones at all.
33
All great and wonderful stories of how the medical and social network worked to save those in this story, and I am happy for these folks. In my case of multiple issues, I have found the medical system flaws, waits of up to 1 1/2 months to see specialists, many MD's who are laptop doctors, and seemed to lack (to me) empathy for the patient. People like me, shy, never married, and standoffish family relatives are left without needed mental and emotional support, while doctors are only too eager to prescribe mind altering drugs.
13
Throughout my childhood, I watched my BFF's mother care for her mother who'd had a stroke. Nana was paralyzed on one side and lived with them. I grew up thinking that was the norm. The purpose of life, my child's mind deduced, was to be part of a family and to care for members of that family. It meant having a home that was safe and accessible for someone with a disability. And it meant organizing your priorities around the wellbeing of everyone in the that family.
Eventually Nana died. I grew up and absorbed another view of life. That new view said the purpose of life was devoting myself to earning money, to building a career, buying things and paying for experiences.
Now I'm old; realizing my young mind was right. Our main focus needs to be caring for each other. Those of us without dependent loved ones need to care for the care-givers. Our family, it turns out, is global.
27
My masters thesis was on supporting family caregivers, the backbone of the US healthcare system. There is much need for improvement & this is unsustainable. I currently run caregiver support/education groups as a volunteer, which is also unsustainable for me personally. Caring for children and/or aging parents at the same time makes it almost impossible. It seems that we can do better in this country.
10
I know this is not this is not the focus but I’m glad he got the second opinion, but there are many, many hospitals closer than New York with excellent cancer centers.
2
@S marcus
Many hospitals where an INFORMED second opinion is available? For a rare cancer?
"You know nothing, John Snow."
1
Interesting how unrestrained capitalism blesses the entrepreneurship of acute health care, but ignores the often less remunerative social needs of its payers...
13
Yes to everything you say. Caring for my mother for 7 years (demenita) and then experiencing my own breast cancer, on top of the financial crisis and a divorce, left my finances and career in ruins. Still picking up the pieces.
14
This is healthcare under capitalism. If it doesn’t generate a profit, the cost is paid by the “consumer” and his or her social support network, in the case of those lucky enough to have a network. The article fails to address childless people without a support network. They are essentially left to die after corporations extract as much profit from them as they can without doing the unprofitable work of advocacy and personal care.
23
This times 1,000. My husband and I are both only children and have no living children. He's older. When he dies.... Unless I get lucky and die first? Haha. It's a train wreck. For profit health care is the worst idea EVER!
12
Public financial support for caregivers would be very difficult to regulate. Who would determine the necessity and the extent of caregiving needed? It would, unfortunately, be very tempting to take advantage of the system.
2
@Aaron Adams
I agree, however our tax regulations could be expanded to allow for more medical related expenses. Start by reducing or eliminating the adjusted gross income threshold for medical expenses.
2
@Aaron Adams Read about the Olmstead Act and Medicare/ Medicaid demonstration projects. I have not kept up in this area but there were (are?) effort to compensate family caregivers taking care of patients who would otherwise qualify for a nursing home. It was postulated that care from family would be both higher quality, more acceptable to most patients, at a much lower cost than nursing homes (which cost thousands/ month yet are poor quality). So the calculations have been done before and could be similarly applied.
The other aspect of this larger story is how many families have to navigate this while caring for children as well. Recently, I have seen other breathless articles in the NYTimes wondering why the birthrate is plummeting, and why more women (and in some cases men) are staying home to care for children, or choosing not to have children at all. I'm not seeing articles that make the connection to the economic decisions families have to make when they are caught between having aging parents and young children or children in school. Is it any wonder that so many highly educated women are not in the workforce? Women aren't "on the sidelines" (as I often see in articles about the unemployment rate), they are running around filling in the gaps of massively underfunded and underresourced care systems. Schools don't provide enough support, and medical insurance & services don't provide enough support. So families make tough choices about which salary they can do without, in order to fill the gaps. Government policies are a big piece of the solution. Providing affordable childcare, providing high quality meals, after-school activities (on school campuses), and homework help for kids, as well as access to affordable in-home eldercare and more nursing and social work support in hospitals are all things other countries can do, but somehow in one of the wealthiest countries in the world, we can't afford it? We're paying MORE for everyone to DIY.
22
Yup. My family experienced this when my mother was diagnosed with Stage IV pancreatic cancer. Both my parents were already retired, so they did not miss work, but I, my sister, and my mother's sister all missed work during doctor's appointments, chemo, radiation, ER visits, and hospitalizations. I worked in many hospital rooms and doctor's waiting rooms, as well as late at night. I "missed" very few actual work days, but the stress and fatigue were a strain. And though supportive, my colleagues could not sustain a needed level of support over the 18 months my mother lived after her diagnosis. I ended up leaving my job 6 months after her death, partly due to resentment over how my situation was handled by managers.
14
The author highlights a major flaw in our healthcare system. My wife, age 66, died from Alzheimer's disease last year. Everyone who is a caregivers for a chronic disease patient feels the pain. According to the Alzheimer's Association, 18% of caregivers had to go from working full time to part time, 16 percent had to take a leave of absence, and 8 percent turned down a promotion due to the burden of caregiving. More than 1 in 6 Alzheimer’s and dementia caregivers had to quit work entirely either to become a caregiver in the first place or because their caregiving duties became too burdensome. Among female caregivers, 17 percent believe they have been penalized at work because of the need to care for someone with Alzheimer’s. This also affects their retirement as their lifetime social security contributions will be less. Caregivers for all illnesses shoulder an impressive burden that lasts for their lifetime.
18
Just a brief reminder that this is the story of cancer, but caregivers are needed for so many diseases and conditions. As a caregiver for my husband for ten years, I finally had to retire from my job when I realized that I was taking more days off than working. Also want to make people aware of a relatively unknown national support group, Well Spouse Association, www.wellspouse.org that is a lifesaver for so many caregivers.
10
Without getting into details, let me say that I have been both a caregiver and the recipient of care. I have decided that caregiving has somehow been deemed an act of love that we "should" want to do voluntarily out of the goodness of our hearts. But it's costly in many ways. So the idea of financial support for caregivers sounds great, but I'm sure no one would be paid enough to compensate for their investment in lost work, lower wages and higher expenses. After all, look how little we pay nurse aides and teachers, who do this for a living. We simply do not value people who care for other people. Until that changes, I see no solution in sight.
36
This rings true. My spouse and I are both self-employed, so we did not let him miss much work over my cancer diagnosis. But I missed a lot of work, and our combined income took a huge hit. I got myself to and from chemo and radiation on my own, though he took two days off for my surgery. We're lucky; I can't imagine what we would have done if we'd felt he had to be there for doctor visits or chemotherapy. And we're city residents, so I took the subway everywhere, but the travel was draining, on top of the treatments themselves.
And that's on top of all the time lost to deal with insurance companies--five in five years due to the vagaries of the Affordable (kind of) Care Act.
I'll never recover the income I've lost through this whole process. There has to be a better way.
15
The administrative burden of being ill for patients and caregivers is astounding. I earn 75% of our family's income, and when I was diagnosed with breast cancer recently, I knew immediately that we would be in trouble. The support of family and friends has made all the difference to me, my husband, and our two kids as I've gone through chemotherapy. They've shouldered financial burdens to lessen ours. My brother, who is not well off, traveled to spend a week with us, taking care of things around the house that we couldn't manage and spending time with our kids so we could work during spring break. Our parents have offered many kinds of support. My husband tries to balance more work hours with more home responsibilities, as I spend hours and hours handling the administrative work of being ill rather than doing the work I'm capable of in the moment. This year of treatment may not bankrupt us, but we will feel the effects of it for many years, probably into retirement even though we're in our 40s.
13
When my daughter was born at 29 weeks in 2009 she spent all seven months of her life in the hospital. Every day either my husband or I were there with her. We were so lucky that my husband, a government contractor in the private sector, worked for a man who told us that he could take whatever time he needed. We know that this kindness and understanding is incredibly rare, especially in the industry my husband is in. When our daughter passed away, one of the first things I did was write to my husband's boss to let him know how grateful we were. If he had been working for almost anyone else, he would have missed her first smile, her first laugh, and so many precious hours with her that are all we had in the end. Going forward as a small business owner, I have made it a priority that my employees have ample paid time off and that they are there for any important and not so important life events. I think it is going to have to happen from the bottom up. I challenge those of you with a small business to employ practices that will allow family members to be able to care for their loved ones in not just health but in sickness as well. Then maybe we can start a tend that will move up to the top.
33
My mother was diagnosed with Stage 3 Ovarian cancer last July. My sister and I both live in NYC and alternate flying to Texas every 3 weeks for her treatments. While leave is available to me, it must be taken in one big chunk, not for a week every 6 weeks. The cost of travel and pet sitting is well in excess of $15,000 for me since we began on this journey. I have to save all of my sick and vacation days for caregiving. I am fortunate and have resources and that certainly makes things easier, however it's time to re-evaluate leave to contemplate long term, long distance caregivers. Greater flexibility to structure leave would greatly reduce the stress of this experience.
5
"We are willing to pay a fortune for the former, and almost nothing for the latter"
If the fortune was not necessary then maybe the latter would be easier to overcome. I find it less than credible that for a country where a basic need such as maternity leave is a big deal, that one could expect a benefit for the caring of the sick - which to be realistic has to be extendable to friends and not just family of the sick person - could be on the cards.
Every time I read an article about important but not completely mainstream aspects of the cost of US healthcare I am reminded of the essential point. That healthcare in the US is a for (big) profit industry where as many middlemen as
possible take their share (of profit).
11
In my view the healthcare system is broken. I spent five years helping my parents die. It included their numerous hospital stays (often signaled by a call from their assisted living facility, in the middle of the night, to alert me that they had been sent to the hospital in an ambulance), the struggle to find the right doctor, and then decent skilled nursing facilities for follow up, and the draining interactions with doctors, nurses and aids. I remember a new nurse who did not know how an NG tube worked, her argument with me about it, the nurse manager who didn't know the answer either, and the well trained resident who came in and explained to both why the first was wrong). Social workers were little or no help with finding skilled nursing facilities or home help. We were fortunate that my parents were well covered by Medicare and Tricare, but the costs of the assisted living facility and later, home health care there, was quickly draining my parents' financial resources. As to home health, thank heavens for immigrants, they willingly and competently do work others will not accept. Then there was the battle with my parents' bank. It was a hellish and expensive process, with little or no professional help. This really does need government intervention and funding. Better home care might save hospital costs, it would certainly help the families of people who are ill.
41
Well written. It is a blessing to be able to care for a loved one or friend, but the financial cost can be staggering. If the one who needs care knows how much the caregiver is giving in lost wages, etc, it’s also a burden for the one being cared for. Family leave helps, but taken with no income for some is just untenable. I do wish it were different. Support groups do help to a point, but in my own case, I felt like I was traversing uncharted territory.
2
My Mom is 94 and has Alzheimer's. She's in assisted living in a facility 2 miles from where I live. I take her to appointments, buy her groceries, pay her bills, visit regularly and do all the communication with family and various care providers. Why is it that (as Carroll wrote) we are willing to pay almost anything for health care and nothing for care giving? It's not that I want money. But the time this takes makes a big impact on my life, and no end in sight.
19
@Nancy Koester
You have my sincere sympathy. I did exactly the same for my 92 year old mother who had dementia and incontinence. It was exhausting work. Mom wanted tonremain in her senior independent living apartment so I hired home care workers. After firing the first several I was lucky to put together a good team that Mom was fond of. Then she fell, undiagnosed asymptomatic bladder infection had made her weak. She never recovered from the broken collarbone. I sat by her side every day for two months, 8 days in the hospital, 5 weeks in a rehab facility and 3 weeks in skilled nursing that was $10,000 a month and pathetic. After a week I made a plan to take her home with a lovely Kenyan woman who agreed to live in with Mom for $150 a day, 12 days on, 2 off. I planned to cover the days off myself even though my 75 year old husband has bone marrow cancer. Mom died the day I moved her home, a couple of hours after arrival. She knew she was home where she wanted to be. Our last conversation a week before she died was “I want to go home” and “I just want to get this over with.” Although I was exhausted after 5 years of caregiving and an intense final two months, I now miss her terribly. Despite the fatigue enjoy every minute with your mom.
79
@Jackie Rosholt You are a hero. Your story brought tears to my eyes -- your care for your mom shows such love and loyalty.
4
I don't know what the answer is but the toll for caring for older parents should also be a major piece of this conversation. I am not close to my mother but I have taken on her coordination of care or she would have gone to the state. Now i wonder if I should have allowed the latter.
She is a lucky baby boomer who has a nice retirement pension that now barely covers her nursing care for her dementia, diabetes, kidney disease, etc.
Even with this, it takes so much physical, emotional, and mental will to get through the constant doctor's visits, phone calls, hospital visits, maintenance of her household affairs, etc. I can relate to some of the comments here of the challenges in getting care and getting doctors to listen to you. Does this happen more to women than men I wonder?
I've missed so much work in the last two years since this whirlwind fell in my lap. And I've ended up in the hospital myself wanting to end it all.
As an only child millenial with bipolar, I dread the day I reach her age but at this rate I doubt I will make it.
My mother was cared for all her life and she wonders why I at 34 don't have children or own a home yet....she assures me I will someday. LOL. let me introduce you to my lovely student loans and laughably inadequate retirement plan, mother. Did I mention how fun it is to find your own care as a mental health patient? It's a mad world.
39
@millenial_who_loves_sunsets
Well spoken.
Sadly it is not so much as "mad" world as a capricious and often uncaring one.
Similarly, POTUS is not "crazy" or "clueless" he is just plain "mean".
5
The toll on caregivers is enormous - particularly when there is no backup or other family members, neighbors or friends to help out. Caregivers are canabalized; their own health, finances and life erodes to non-existent. As with everything in the USA - caregiving is part of the DIY system here.
43
@Randé "Caregivers are cannibalized" Three truer words have never been written.
9
I watch a documentary about who give care to relative who had Alzheimer's.
There is a statement in this documentary ; Impact on caregivers (relatives, institutions etc.) and sheer number of increasing age population, concluded as Alzheimer alone will easily bankrupt America.
Scope of caregiver issues and impact on economy in western societies at this moment is entirely denied by our politicians.
13
Thanks for all the caregivers described here. We all hope to find a way to manage through major life events - illness, disability, births and deaths - and find the wherewithal to have a good outcome. These are not rare events but each individual is left to navigate the payor system, care provider access, to find time for treatment and home care for themselves and family on their own. We all lose, people who were too sick by the time they came to treatment and died, people who quit professions to become full time care givers, children who don't get an education because of family disruption and on and on. When we discuss "health care" these losses need to be factored into our costs. How can these systems be more humane? More information to make these costs more visible is a start.
6
The economic toll is sure, but so is the emotional and social price paid by the caregivers. I’m the legal and practical caregiver for my Mom who had a stroke last year. She’s in a nursing home and I still spend 25-30 hours a week taking care of all the details of her care and life. She’s very vulnerable and needs so much. I’m glad I can help her. At the same time the struggle to maintain any kind of normal life for myself is real. And I have found no systemic support for a person in my role. I have gradually learned how to navigate all systems, but it’s a constant uphill battle.
22
When my husband was diagnosed with pancreatic cancer, my first phone call was to my boss saying I would not be coming to work for an indefinite period of time. Luckily, his response was to say that my job would be there whenever I could return. I spent 3 months being his care partner, or as he said so beautifully “ my wife is my doctor, my nurse, my chef, my chauffeur and my guardian angel “. I do happen to be a doctor but that didn’t make the job any easier. In addition to the angst of knowing this was not a curable disease, I was emotionally spent from the constant concern for every detail of my husband’s care. I knew too much.
Ultimately after he passed away, I took another 2 months to recover emotionally and deal with his estate. I used vacation time, family leave and finally medical leave citing my own emotional state as unable to focus on work. I was lucky to have an institution and boss who gave me the time. But, no one can imagine the emotional toll of being a 24/7 caregiver for a dying patient. People who need to work while caring for a sick family member must deal with intense stresses from all sides. Surely we can do more to make these situations better. Perhaps offering better options for extended leave with pay or skilled help to allow the caregiver some free time would be a good start.
68
@Anne Kolker Couldn't agree more. With some fantastic new treatments, my husband survived 18 months. I wish I were still doing it of course, but working to keep the insurance, raising our twins from 16 months to 3 years, driving to the endless, endless appointments, begging, begging, begging for help, just to keep him alive a day longer has left me forever gutted by the knowledge of how very little of a village I (we) have. I so wanted to keep him going until the girls were 4. They would have had a chance of remembering him.
5
I am like your friend: great insurance, generous leave policies. My friends are almost unanimously employed in high-level, high-demand jobs. I am coming up on knee replacement surgery.
Asking them to take time off to get me to and from appointments that require someone accompany me (as opposed to getting in a taxi) is a major stretch. Their spirits are willing, but it is a lot to ask.
Some of my care will happen at home. This will mean less stress for me, no need for friends to make plans around my appointments. Home care used to be standard. I think we need to bring it back
27
@Charlotte K
Longer hospital stays used to be standard, too. A few decades ago, patients stayed in the hospital until they were really ready to be released. Now, it's all about the bottom line, hospitals have cut nursing staffs to the bone, and patients are shoved out the door with drains still in and dressings still needing frequent changing. It is simply assumed that some family member will be willing and able to deal with wound care, mobility, pain management, and other issues. Until we get profit out of medicine, this will never change. Patients' needs are in direct conflict with profit.
6
It is wonderful to read how so many of us gather around those we love to care for them through the horrors of cancer. It is also so good to read about a male doctor who has learned these lessons first hand and is telling the world about it. The hope of this treatment is at least more years of life and even more so, a cure. The millions of us caring for Alzheimer’s patients can only look to progressing for years to come and more and more responsibilities. The medical community knows we won’t quit and it reaps the benefits.
9
A very thoughtful article spotlighting the broad family and societal impact a debilitating disease may exert.
Imagine having to endure these issues and worse over the period of a lifetime, as experienced by individuals living with disabilities and their families. Every day, they are forced to rely on a patchwork system that is wholly inadequate, underfunded, and certainly not person-centered. This is made worse by the passage of time, as the person with disabilities needs grow, parents age, siblings move and the kindness of friends and community withers.
Government's response to this challenge is to create a caregiver role which is inadequately compensated - thus we are unable to retain good people and families must leave cobble together an adjunct system that requires time-off from work and no rest for the weary.
@deservemoreIL
17
As with so many troubling issues, it would be useful to know about and learn about other countries who may have found a better and workable solution. We never should consider ourselves above learning from others, adopting and adapting.
21
@Penseur I totally agree! There are many other ways of care that are much better than ours.
1
Completely agree with this article and yet it does not address the issue of dealing with the healthcare providers when things go awry. Who is going to call BCBS when billing is incorrect, who will deal with medications that are not approved? I'm a healthcare professional, we have excellent insurance by all accounts. But that doesn't mean that all of this complex care is being managed by your private financial service company. You need someone who will advocate for you during those hard times.
38
Yep... my wife has cancer and the last 9 months have been essentially an acute phase of treatment- surgery/ chemotherapy and imaging trips to our HUMC Cancer Center.....she is-thankfully- in remission now but requires ongoing maintenance and monitoring of the disease status. We are fortunate that this outcome has achieved by some very special and experienced oncology team ... I retired in 2017 and our private insurance has been extraordinary in supporting the cost of treatment plan-kind of what you expect I suppose. From my experience, this is a full time job to be a caregiver to a patient; had i been working when this diagnosis occurred , it would have been ENORMOUSLY stressful to deal with a full time responsibility s of an executive position and a fill time treatment of a cancer patient . I am reminded that this responsibility is the burden of any person with a chronic disease...as others have said it is both physically and mentally exhausting..in fact many patients with a cancer diagnosis experience PTSD and acute anxiety.
20
This is the inevitable result when professional nursing is stripped from the system.
What is described as caregiving is the abdication of the US in valuing and paying for professional nursing.
Care is not the same as treatment.
Care is not intuitive and unskilled.
Care relies on a base of professional evidence, research, practice and judgment in supporting patients from birth to death and across full dependence to self-management of health and wellbeing.
We ignore this and professional nursing at our peril.
72
My father had a stroke and since then I have cared for him around the clock. He needs assistance with everything: to sit up in bed, to get dressed, to go to the bathroom (about 12 times a day), any transfer, to brush his hair, to change the tv station. I am an only child so there isn't a lot of help. We call a nephew each morning to check in that we are both still going. It is incredibly draining. I am fortune to have a respite worker come in so I can go grocery shopping, another comes in about once a week so I can get away a little as long as it fits on a Thursday afternoon. I am approaching the five year mark but it never gets easier. I pretty much don't remember the world before and have no idea what the future will be after (as he now is a hospice patient there is only one conclusion, though in the case of this 98 year old, the end could still be years away). Dad is getting his last wish to not end up in a nursing home (and the only good thing for me--I don't have to endlessly visit a nursing home racked with guilt). Hopefully he will get to stay in his own home surrounded by the familiar until the end. But when that comes I have no idea what in the world will be left for me.
John (who long ago used to excel at standardized test and have potential, but now can only really hum the theme songs of every western tv show every)
74
@John
Once all of the legal issues are settled, which can take awhile, you will feel just what you anticipate.
Be good to yourself. Get therapy after to help you find yourself again. That’s what happens: you will feel lost, without purpose, and have to re-define your life. Essentially you discover yourself, re-invent yourself.
You’re doing a wonderful thing as a caregiver. You’ll really have to become a caregiver for yourself.
I was the primary caregiver for my father, but he W.S. fairly mobile and able to do many things for himself until the last few months. I was working (teaching at university) so had a flexible schedule. I retired shortly before he needed 24-hour attention. I was fortunate to have a sister who helped as she could, friends who helped, home health for years (Dad was on dialysis), and finally hospice. I had books, small pets, music, a hobby of jewelry-making, and dvds to get me through. And the internet.
It has taken a few years to get over the sense of “now what?” and “who am I?”
You’re doing an amazing job.
32
@J. I retired at 55 (and moved back to the US) to take care of my now 90 year old, blind, slightly senile mother. Yes, the toll has been tremendous - financially, emotionally, socially and physically (I have my own health struggles now). Mom is a four time cancer survivor herself and I was fortunate in the past, to have occupations which allowed me to take months off.
As miserable and exhausted as I often am, I can say this - my mom, though frail, is happy and her anxiety level is low. My brothers each spend half their saturdays with her as well - a major comfort to her. I give up what will happen to me “after” to God. Whatever my path will be, I will know that I did the right thing to give my mom the care she deserves and the best senior years we can manage. Our dad died at 49 and none of us siblings would have the lives we do without the sacrifices they both made for us.
Everyday, my dog and I spend our time at mom’s assisted living (she loves it there and won’t move in with us). I have seen so many residents there who are suffering and their relatives never visit, don’t help.
So, my rambling to my fellow struggling caregivers is this - we are doing god’s work - it’s so hard, but so worth it.
14
This story hits home. It still only captures a relatively short time as well. My spouse has stage IV cancer and we've been dealing with chemo, radiation, imaging, appointments and acute and chronic health issues that have come from his cancer over 5 years. He's still doing relatively well, but it's a lot for the two of us (plus our "village") even with supportive and flexible work arrangements. We're grateful for his relative health but exhausted as well.
24
I spent over four months in Houston (I live in NYC) to care for my brother who had two stem cell transplants (one auto, one allo) at MDACC. At the time I was freelance writer, and debt free, so I could do that. However, there was little choice in my doing so. MDACC would not have done the procedures without a caretaker on site - it's a rule - it just takes that much aftercare for the patient to recover. I was the only family member in a position to take that on.
Suffice it to say that the experience left me shattered - drained by what I had to do, traumatized by being a powerless witness to the leisurely paced carnage that is cancer.
So yes, ever since, I consider myself a cancer survivor.
95
Many pediatric floors in hospitals in the US require a full-time parent/guardian to stay with their child 24/7. If they need to leave the floor for some reason, another designated adult (sometimes a parent-hired babysitter) needs to be present. The rooms are not designed for this either — parents are expected to sleep in an armchair for days on end.
I have seen how disrupting this can be for families — especially for single parents who miss work and cannot take care of their other children.
It doesn’t have to be this way.
6
I’m glad that this article was posted. I’ve been involved in caretaking for friends who have had cancer so I know this story very well.
However, there is a lot of need for caregiver support for loved ones with long term illness as well. My 81 year old dad has Parkinson’s and I’m his sole caregiver. This absorbs the majority of my time. The number of family members who give up their lives to become caregivers is growing as our population ages. This takes workers out of their jobs for years and is mentally, emotionally and physically draining, putting caregivers lives at risk as well.
44
My father had cancer and I saw him every day. My aunt had heart disease and I saw her every three days plus weekends. My mother had dementia and I cared for her for 5 years after my Dad died. My wife’s brother had colon cancer and died at 52. Her younger brother went into cardiac arrest and she flew to Chicago to be with him and her parents. I have driven to Peoria twice in the last six months to be with my in laws who are in their 80’s. He has COPD, Mersa and had a stroke in this past December. We are now in the process of moving them to NJ to be with us. In addition, in the last 7 months we took in our nephew who has a drug problem.
My wife and I look at each other and say who knew. We raised four children and all went to college and are doing well. But the elder care has consumed us for 9 years.
Life is tough. You have to slog through. It’s not up to the government to have a program in place for every need.
11
Excellent story and it should be addressed.
However fix the initial problem first, ie our de facto criminal health care system pre ACA.
If I read the story correctly at least this man had good health insurance first.
Millions of Americans don't and go bankrupt or otherwise become financially destitute or suffer.
39
I drove more than 4000 miles over two months in snow and ice to care for my elderly father and his wife a few years ago. One was hospitalized/critically ill and the other had been released from a nursing facility after breaking a leg and was immobile. I survived on 3 hours sleep. But the real toll came from the "health care machine" - insurance companies, pharmacies, doctors, hospital personnel, changing nursing shifts. It was consuming. A pastor stopped by my father's hospital room and told him to be grateful I was there - that a lot of patients have poor outcomes because they have no one advocating for them. My father had almost died twice while in the hospital due to a physician error and lack of nursing personnel during the Christmas holiday. Adding to the chaos were "concerned" family members who called constantly for updates - but were not "concerned" enough to actually come to help. As time went on, I realized that there were too many people providing too little value. I told the insurance rep to quit calling; being direct resulted in a visiting nurse. I told family to stop calling; one email would be sent daily. I determined who the "real" doctors were and refused entry by any others. Lessons learned: our medical machine adds drama, chaos, & expense. It doesn't work. Caretakers, prepare for war...
171
Caringbridge is a great tool for keeping the concerned informed and minimizing the communication burden on the caregiver.
2
One of the reasons for this miserable "system" of health care, pieced and patched together by exhausted friends and family, is that hospitals and insurers have cut their support for social work and nursing outpatient departments. Social workers can set up a "care plan," for patients about to be discharged from the hospital, but there is little way for these professionals to visit and offer the emotional care and analyze how the "plan" is working for the patient and her/his social network between appointments when the patient is home and "coping." Too often, no one but an exhausted family member is actually trying to coordinate the communications between various medical practitioners (e.g., the oncologist and the surgeon do not communicate directly with the primary care physician). Only when patients are facing the very end of their life are hospice workers able to do this very important work in the patient's home.
Insurers and hospital executives have failed monumentally to address home care. I hope the Times can interview social workers and visiting nurses to get their take on this problem. I'd bet the reporters would get an earful. Please follow up.
104
I was quite lucky and I know it. During most of my year long cancer treatment, I was able to drive myself to most radiation and chemo appointments and to take care of myself after multiple surgeries. I didn't need much help, but the help I did need required my husband to take unpaid time off. My friends helped some, but I don't know what we would have done if I had been as sick as many of my friends have been during treatment.
12
I was lucky....my husband was able to care for me during radiation therapy, but then we had to decide whether or not he would take a much-needed, well-paying job overseas or stay with me during the next phases of chemo and surgeries. He took the job and I joined him a year later. I had the luxury of time and friends to help me.
But....what do folks who are unmarried, between jobs, or with a small network of friends do? Are they supposed to just ‘take it’ and hope for the best?
51
@Chicagogirrl13
The Poors just die. If you aren't working a white collar, college degree job with awesome benefits, you aren't flying to Sloan or MD Anderson for a second opinion.
You go to the local hospital, and you hope the oncologist has a clue stick about your cancer. My friend had to pay UPFRONT for her chemotherapy. What person working above barely minimum wage has $10K to throw at a doctor's office to get chemotherapy rolling, and has a buffer to wait for the insurance to pay back 3/4 of the bill?
Health is a privilege not basic human right in the US. The worthy good cattle with money get care (as described above is still troublesome). The not worthy icky poor cattle, are basically hosed. I'm surprised The Poors with cancer don't get methadone thrown at them and told don't come back.
15
It takes a village, truly. One cannot expect society to come in a provide all kinds of care, including emotional care for the unwell.
Having deal with serious illness in my own life, I am baffled by what the author expects the government to do. I needed my family with me and not only to take me to appointments and make me meals and they, in turn, needed to be with me.
Sorry, but i don't get it. This smacks of paid infant/child care when grandma, aunts, uncles, cousins and neighbors were much more suitable and loving caretakers for our children when parents were absent.
1
FRT try to put yourself in other people’s shoes. You say that relatives are much better and more appropriate caregivers, but what about people who live thousands of miles away from their relatives? And what do relatives do if they are working, even if close by? Caring for someone with an illness is indeed a lot of work, and family and medical leave should be compensated.
50
@FRT I have very few close relatives some of whom live abroad and have lost two close circles of friends to illness over the years. My newest circle of friends are all now ill or about to move abroad (healthcare and family). I am not atypical if you look at the statistics on family size and mobility. So you cannot assume that everyone has a robust village. You cannot assume we had control over that either since my "village" was depleted by illness and death whether post Civil War epidemics, 1918 flu, or deaths in the 21st century. If I lived in Sweden I would not be in peril but I live here. Hope you now get it.
44
@MBKB
And who is responsible for caregiving when no caregiver is available? I have had cancer surgery denied simply because I did not have a relative available to simply "sign me out" after surgery. Coverage for a half day of observation would have been adequate. If hospitals are unwilling to take on the liability of releasing a patient after surgery without additional supervision and/or care, that supervision/care should be covered under insurance.
100
Dr. Carroll points out many of the problems in our system of medical care (although having to get a second opinion far from one's home seems kind of stretching it). It is true that a family member with cancer will lead to bankruptcy in 1/3 of affected families. It is true that FMLA does not cover enough...who among us can afford to have unpaid time off? Another issue is that workplaces are staffed so leanly nowadays that everyone's coworkers will be providing unpaid coverage as well, filling in for their absent colleague. Imagine if your job would hire someone to allow you to stay home with your ill family member? Because there is guilt involved in staying home, the guilt from burdening your coworkers with your job. I don't have an easy answer (well, I do actually; it's to unionize every work place to guarantee work-loads and protect the workers who do show up, which would probably include hiring temporary staff for workers who need more time off) except to reduce profits to support the workers, whose responsibilities to their families must be recognized tangibly and not just with kind words. Also, how about more home visits from nurses and aides, to help with the care of the sick as well as to give some respite to the family members? Medical coverage should include this as well.
52
This article really captures the problems of caring for family and friends with serious illnesses, especially the problem with paid leave policies only applying to spouse, parent, or child. With so many people in America not having children, or being unmarried as well as childless, it is unfair that (as in my case) an unmarried, childless person with cancer can't count on a sibling or cousin to be able to help care for them because they won't qualify for paid leave.
65
Good for spotting the elephant lumbering around hospitals and clinics. Yet it only scratches the surface: the elephant is hidden from view most times. Our ignorance of the need for care support is intimately connected to the financial toxicity of long term care. For illnesses requiring long term treatment, there’s the chronic emotional burden primary caretakers shoulder after the initial surprise and treatment is over. A young family costs carry forward into the next generation... It takes a village.
May the conversation continue into system and cultural adjustments to fairly allocate care costs. We could discover the hidden blessing of illness: and opportunity for realignment and increasing the village’s overall health.
14
"A study published in Cancer the year before found that over a two-year period, caregiving costs were more than $72,000 for lung cancer, $66,000 for ovarian cancer, $59,000 for lymphoma, and $38,000 for breast cancer."
It's not only about the financial burden. Studies show that caregiver distress, including depression, is often as and in some cases exceeds that of their loved ones who are receiving treatment. This magnifies the toll taken by economic and other challenges.
74
I had both of my children in Switzerland in the early 1990s. After the birth of my second child (my second caesarean), I landed in the hospital for a week before I could have gall bladder surgery. I had undiagnosed pancreatitis which started a week after the birth, and wasn't diagnosed and dealt with for another five weeks. My husband took all of his vacation leave to take care of the children, leaving none to care for me when I came home from the hospital. My doctor insisted on writing me a prescription for household help, which would be paid by our insurance. When the helper showed up, she wanted to know what my husband wanted for his hot lunch. When I told her that my husband did not come home for lunch, she was totally baffled and didn't know what she was there for. She thought the household help she was to provide was to cook hot lunch for the man of the house.
21
I quit my job to help my mother with dementia. We could afford it, but how many can? The financial, physical, and emotional tolls are enormous.
86
@Diane - I retired at 50 to care for my husband who'd had to go on disability the year before after 13 years of Parkinson's disease. That was 15 years of loss of what had been a very good salary. We made it but things were tight for years. When I had to put him in a nursing home many years later, I had to pay for it out of pocket for months. When his half of our life savings was exhausted and he had to go on Medicaid, I "made too much money" for Medicaid to pick up the whole tab, so I had to pay half of the nursing home bill out of my own half of our savings. Then, when he died, the state slapped a lien on my home for every penny Medicaid had spent over those years. I was able to negotiate the sum down for "only" tens of thousands of dollars if I'd pay it on the spot. I did, but it cost almost every penny of my husband's life insurance.
78
This article is hugely important. Caregiver support is almost completely lacking, and the need continues to grow. It's not just diseases like cancer that take a toll. Caregivers are struggling to support disabled individuals and nursing home patients as well as elderly individuals who are still in their homes but need larger and larger amounts of help as the years go by. I am currently exploring how my church can assist caregivers in our area, and I urge other churches and volunteer organizations to step up. There is no government agency that deals with this almost invisible need. It's up to our citizenry to take care of each other.
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@Diane S. Look overseas. When I lived in Serbia, there were "recovery and care" facilities with nursing staff, really hotels with nurses. So many people had lost relatives during WWII and others had relatives without the time, money, or skills to support an ill relative. I do not know if these survive now (doubt it) but it seemed a logical approach for long term post operative or high requirement treatment.
Condo complexes with a nurse might be an approach. How to manage the money is the problem in our system. Until you address the money no church can find a solution. National healthcare would make the church or organization support an option. Good luck with that.
Until then, my sister-in-law has Honduran ladies helping 24/7. Alzheimers. She recognizes no one. Sad and a very sudden decline. That border wall is not going to make my elder years better.
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Thank you for your insightful and very tru article.
I am a bit shocked, that as you are a pediatrician, that you are just finding out about the incredible burden of caregiving..
I realize you are a professor and thus may not see patients, but to not comprehend the burden that even a illness and disability can place on families until a friend of yours experiences it is astounding.
That said, thank you for looking into this - perhaps a better way can be forged, especially for those who do not have privilege, connections, friends or family to help them to the extent that is needed.
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@elise As the wife of a physician, a former medical employee and parents who worked in healthcare it's not until doctors and medical staff have a personal relationship with someone who is seriously ill that one learns how difficult our U.S. medication system is to navigate. The last two years of my mother's life I felt like I was in a battle with a healthcare system I'd grown up in and thought I understood. I hope I die quickly.
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@elise
Elise I completely agree with you. And the writer seems to be a "with it', very compassionate person. If someone like this was taken aback by the toll on caregivers, imagine how out of it many healthcare providers who are not as sensitive are.
That being said family and friends will always - I hope - be the best caretakers and no money or government program can replace them.
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@Elise. It's possible to intellectually "know" something without really grasping its full weight and impact. Sometimes, it's only through experience that you can truly know.
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When I battled cancer last year my ex-husband drove me to my operations and came to some appointments but mostly I was on my own. It takes super-human effort to get to appointments and take care of self while trying to recover. I don’t think everyone understands cancer’s long tail and how support is needed long after the surgery. It’s a long ride and I wish everyone on this journey the support and warmth they need.
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I applaud the NYTimes recent articles focused on unpaid caregiving, which will very soon impact more and more Americans as boomers retire--10,00 per day--and their desire to age well and in communities of their choice equiring unpaid care from others.
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Yes so very true that the village required for help in dealing with a loved one with a debilitating illness is almost invisible. My husbands first 6 month chemo routine has ended and he’s now doing a 3 month extension. We have a huge calendar to keep track of appointments, tests, lab work etc. not to mention when a bad week for my husband causes all sorts of ripples when he cannot get out of bed and tests or other appointments need rescheduling.
Let’s not forget to include the massive amount of time spent on the phone with insurance companies either getting authorizations or challenging (lack of) payments. It’s a nightmare illness coupled with a never ending need of help from others. Until we experienced this with his cancer diagnosis we had no idea.
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One of my friends who had a very sick child in her family taught me to give gift cards. A nice thinking of you card and a gift card for gas, food, coffee and donut places. The fact is if you are a caregiver-not in an urban environment-you are going to need those things. You are on the road alot, you need to use the bathroom-hence gift cards for coffee and donuts.
Bring a casserole, even if the patient doesn't feel like eating, the caregiver still needs help. Even if it is just some premade chicken salad and rolls. It doesn't have to be fancy. Sometimes getting to the store can be impossible when dealing with a sick family member. A quart of milk will really be appreciated or some eggs.
When someone dies, their family gets food (sometimes) When they actually need those items is while the person is being cared for and actually a few months after their death. No one is there beforehand, they swoop in (sometimes) right after the person dies, and then disappear.
Instead of saying the generic "just call if there is anything you need" take the initiative and help the person and caregiver now-with some gift cards or food. Show you care while the person is alive and the caregiver could use some help.
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I would add that handicapped parking stickers when you have a person in a disabled mode is of course very helpful. But, I also found that as a caretaker running errands for meds, equipment, unloading wheel chairs, buying food, etc. i appreciated having it even when my spouse was not in the car. Perhaps a "caregiver" sticker could be supplied.
An excellent piece, which I hope will have a happy result.
We all need to remember, though, that it’s not just people with cancer who face huge burdens. People with less visible diseases—like mental illness—face huge obstacles to receiving necessary treatment. The paperwork necessary to file for Social Security disability benefits, for example, is monumental, and not in a good way. Because mental illness is not as visible or sympathetic as cancer, these claims are almost always denied and must be appealed. The benefits themselves, if the person succeeds, are laughable, also not in a good way. My son, who is disabled by mental illness, has two attorney parents, and we struggle with the massive and continuing amount of paperwork his condition and the government generate. How can people with illnesses but without such backing possibly be expected to manage? The answer is that they can’t and they don’t. My son could be out there sleeping on a street corner. Heaven protect him when my spouse and I are dead. The government, which has massively failed the weak among us, certainly won’t.
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@Barbara8101 I'm surprised this issue is a surprise for Dr. Carroll. As an internist taking care of many chronically ill patients, including people affected by Alzhemier's disease and stroke, the stresses of caregiving have always been apparent to myself and my colleagues. In this article, Dr. Carroll mostly talks about the finances and logistics of caregiving but most healthcare professionals are also aware caregiving also has a psychological and health toll on the helpers. If anyone reading this feels overwhelmed, one resource is Family Caregiver Alliance.
https://www.caregiver.org/caregiving
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@Barbara8101
“How can people with illnesses but without such backing possibly be expected to manage? The answer is that they can’t and they don’t. ”
And nature takes its uncaring and brutal course. It is common and usually invisible. Where it is visible, we turn away and think “ somebody” should do something.
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@Barbara810
Similarly, diseases that are caused by medications we have shoved into us by our broken healthcare system are often denied to exist or not paid for by insurance. As far as our caretakers being paid for, perhaps in some far-off dream.
I'm in a group now of people who got diseases from a statin drug, but other "blockbuster" drugs of the past (like Celebrex and Vioxx, HRT, OxyContin, etc) similarly brought their own diseases, disasters and death. We have no system for reporting adverse effects of drugs, so it's hard to know how common problems are.
Meantime, unlike other developed nations, we have drug ads direct to public, drug trials paid for by the drug manufacturers themselves, etc. We even have "studies" to show that there are no adverse effects--that every single statin muscle problem is due to "nocebo" effect--even in the many cases where people didn't know the adverse effects before taking the statin.
So here we all are, made severely sick: one disease is autoimmune myositis, diagnosed, known, but nevertheless often denied. A second disease seems to be a mitochondrial disease.
We not only have to pay for our own caretakers, or find angelic friends or family, but our doctors tell us that there's nothing they can do for us. They're probably correct, but where does that leave us? It certainly leaves us needing caretakers. Are you among us? [email protected].
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Thanks for pointing out all of those other, less obvious ‘costs’ of cancer care. I am the spouse of a cancer survivor and I was the son of two parents who both had to deal with the disease for months before they died. In all three instances the demands on my time and energy were enormous. With my spouse I pretty much did it on my own. With my parents it was shared by my wife and by my brother and his wife. In the case of my Mom she/we had the resources to afford an in home health aide. And Hospice also helped. Nonetheless, the process which lasted for about one year before she did still took its toll on all of us family members, our jobs, etc.
Our healthcare system hardly recognizes these demands, let alone does much about meeting them. Save for Hospice, which thankfully, is reimbursed by Medicare families are on their own. This ‘independence’ is the great American way!
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I could never have made it through cancer back in 2006 without my husband. He was my rock. Looking back, I don't know how he did it. I had daily radiation appointments at 8:00 AM and they were about an hour's drive away during rush hour. My husband worked second shift + mandatory overtime. He would get home from work around 3:30 AM and then get up at 6:30 to drive me to radiation. On Mondays I had chemo after radiation and he would sit there for the five hours it took my meds and fluids to run. Then he would go to work. Fortunately I was pretty much OK on my own and my best friend, who is a nurse practitioner, checked in on me at least by phone every day on her way home from work.
The only day he missed work was the day I had surgery and he used a vacation day for that. Yes, he worked for one of the largest employers in the country so he was eligible and had applied for FMLA. But FMLA is unpaid and who can afford to do that for weeks on end?
I was one of the lucky ones; I also had a good union job with the same large employer so I had adequate insurance and we didn't go broke. I don't know how we'd have made it through otherwise; we were very fortunate that we had short-term disability coverage which replaced about half of my weekly income. Things have only gotten worse for American workers since my experience in 2006; I can't imagine the experience of a spouse caregiver in today's environment. They're likely looking at medical bankruptcy plus the loss of their own job.
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@pedigrees — WOW. Just wow. I hope you and your husband are doing well. Hard to fathom how he pushed through his exhaustion. I think it is called love.
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@pedigrees I applaud your recovery, and especially the part your husband played in making it through. I am familiar with the problem from both ends. when my 1st husband struggled with lymphoma, I was the working spouse, and made every necessary sacrifice needed, and took a mighty careen hit. Now, my 2nd spouse is going through a terminal illness I am retired and can devote 100% of my time to being a care giver. I am glad to do all I can: I just feel terrible about all the people who lose their loved ones and then lose everything else because of this void in our health care system.
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