One used to take care of all and now how hard it is getting for all to take care of one and or two. Changing times.
3
Today, most children of parents who can no longer care for themselves have full-time jobs and/or families of their own. My parents both died before such care was necessary, but my ex has been in a nursing home with dementia (healthy otherwise) for two years paid for with savings that may well run out before he dies. Although I have saved a lot for my own care (my second husband died of a stroke 5 years ago), I don't want to put my children through having to take care of me. I hope that I die before I become incapacitated--I worry most about dementia, as I carry a gene for late onset Alzheimer's (both my parents died (cancer, heart attack) when they were younger than I am now. I wonder if I am taking drugs for blood pressure and cholesterol only to live long enough to develop dementia and am seriously considering stopping both "life extending" medications. But I think I will continue to exercise, because I feel better when I do.
2
A good article focusing on the problems of care-givers, attending to their sick aged relatives/parents. Unpaid and untrained, they serve the suffering older family members. Several touching narratives of the sacrifices made by the care-giving sons or daughters are given in the comments section, who didn't even realize when a major part of their own lives were spent while attending to their old parents. These family care-givers became lonely themselves after the sick and aged parents died, because they did not marry or have children, had no company, and they became old themselves. Some of these care-givers suffer cognitive impairment themselves, and have none to care for them, as they live on. It is pathetic to read these stories. Very personal sufferings, but very moving, leading to a lump in my throat and tears welling up, as I read.
4
Care-givers, unpaid and untrained, attending to their sick aged relatives/parents do a commendable job. Sacrifices made by several care-giving sons or daughters are given in the comments section. They didn't even realize when a major part of their own lives were spent while attending to their old parents. Some of these family care-givers became lonely themselves after the sick and aged parents died, because they did not marry or have children, had no company. As time went by they became old and now suffer cognitive impairment themselves, with none to care for them. It was heart-rending to read these very moving stories, leading to a lump in my throat and tears welled up, as I read.
1
In 2005, my wife's sister, then 65 years old sister, was diagnosed with breast cancer which had metastasized. We called her to Mumbai to get treated at Tata Cancer Hospital. She would stay with us for months and go back to her hometown, and I believe that she could live additional 5-6 years because of the excellent medical treatment and the family support system. The same worked again in an emergency situation four years ago, when my wife, then 66, and a diabetic taking daily insulin injections forgot to eat anything at dinner time after her insulin shot. I discovered in the midnight that she had gone into a coma. The family support system was there. I, my son and a young neighborhood resident tried to carry her to the car brought in the meantime by my son-in-law who also lives across and had rushed at my calling. We could take my wife to a good hospital eight kms away in 10 minutes flat and the doctors at the 'Casualty' had no problem in reviving her without any 'hypo'-related associated damage to her organs since we had brought her in good time.
3
When my father was diagnosed with TB in 1959, it was my mother who took all care of him till he passed away in 1961. She cautiously isolated him in a separate room of our home in Punjab, to make sure that I, her only son didn't get infected. Years later, a call came to me in 1996 from a doctor friend in my hometown, who stated that my mother then over 70 yrs has developed incurable cancer in both of her lungs and may not live beyond a few months, I was shattered. We rushed to see her. The large joint family of our relatives were attending to her but I felt helpless since I lived 1400 km away in Mumbai, and couldn't spend more than a week or two at a time with my mother. So, I did the next best thing, I stationed my wife to be with my mother for the few months she lived, and returned to Mumbai to attend to my job as well as the needs of my college-going son.
2
In Mumbai, I have a friend, now 79, who has been suffering from Parkinson's for the last 10 years or so. His two children are settled elsewhere, and their jobs simply won't let them be the care-givers for his father. But his wife found a solution. Her sister lives in the adjacent flat, and they have opened a private passage in between, and as a family they act as perfect care-givers, and keep him cheerful. When I visit him, I have to 'steel' my nerves to act and talk positively, because one should always sound hopeful, as stated in this article, too. I have another friend, a senior scientist now about 83 yrs, who has no age-related ailments, except loneliness. She was living alone, but her son, settled abroad, shifted her to one of the best old-age homes in India. I went to see her. She has a small flat to herself with a full-time maid to assist her. There are a lot of 'home'-mates but I guess my friend does not associate with them. The care-giver maid said that she gets worried about the 'sparse' eating habits of her ma'm. I can imagine the plight of sick elders living alone, even with all comforts in USA. The 19th Surgeon General of US, Dr. Vivek H. Murthy, said once that the most prevalent health issue in USA is not cancer, heart disease or obesity. It is isolation. Scores of old Indian parents go to spend months every year with their children, who have settled in USA, to beat their own loneliness and also to act as family support for their grandchildren.
3
@Jatinder Yakhmi, it is very interesting to hear what kinds of arrangements are possible in India as compared to USA.
In USA, a couple or individual must first exhaust all their resources and become poor paying privately for care. Then the government funded care is inadequate. Family help is essential for a good quality of care.
My Canadian cousin is able to get temporary care for her elderly mom, allowing her to get an occasional vacation, paid for by the Canadian healthcare system. They pay for the service through taxes, as part of their health system.
6
The article has underlined a very important aspect of present-day lives that 'having a sick and elderly loved one is often a full-time job'. Very true. Another take-home message from the article by Dr. Jauhar is that, 'being sick and elderly in this country (USA) can be terrifying'. Absolute fact of life. But the same is true anywhere in the world. The impact of the problem is softened to some extent in several oriental countries, such as India or China, where the traditional joint family support system, though crumbling under the pressures of the nature of urban jobs, is still kept alive. Take the case of the courier delivery man Cai Yujun, 52, in southwest China, who has been taking his 92-year-old mother Yang Suxiu on his rounds as a courier on his electric bike for the last seven years because she has Alzheimer’s and he cannot leave her alone at home for long periods. I am glad that this article is written by Dr. Sandeep Jauhar, someone with Indian and specifically the Punjabi roots, the same as mine. I am now 72 years, and have lived in Mumbai for the last 52 years, and worked before retirement as a scientist in a Government lab for 45 years.
3
Philosophically, one asks what is most important thing in one's life: taking care of one's old parents by making any sacrifice needed, or taking care of one's own health and continuity of the job so as to be able to withstand the pressures, physical and financial, faced as the vulnerable caregivers? Alternatively, does the solution lie in the elderly sick people dialing a reliable care-giver, such as through the App 'Papa' introduced recently in the state of Florida, which connects registered college students to Senior Citizens who need transportation, house help, technology lessons, companionship, and other senior services, of course on payment?
1
@Jatinder Yakhmi, The declining elderly don't seem to recognize that they need the care, so that would probably not work well. In our case the parents insist on the son or daughter providing the help, and refuse to accept "strangers" caring for them.
Our communities need to evolve to allow more social interaction, which will also keep our aging minds sharper and protect against the disconnection that comes with isolation.
2
Oh yes, free housecleaning once a month would be great too.
2
After my mother fell in 2010 I quit my job. For the next 8 years I flew back and forth to idaho 6 to help my siblings take care of my mother, staying 1 to 3 monthsm. My siblings never offered to support me emotionally. After reading these comments I realized we should have hired care manager. Sickness, death and dying were never discussed in my family. I I was clueless.
I got exhausted taking care of mom so my daughter took off work to help several weeks a year.
Last October mom died at age 96. Then 6 months later I was diagnosed to stage 4 lung cancer.
Now my sweet daughter quit her job again and career and is taking care of me. My siblings are not helpful but strangers are! I’m lucky. My work now is to help my daughter not burnnout. I have long term care...but it doesn’t pay her. A rip-off.
I’m not too sick yet for LTC. And i am more happy than sad most of the time because she is with me and I live near nature and friends , meditate, and we have legalized pot in our state.
The managers of our USA are delusional. In November vote for people who care and put our taxes towards education that teaches empathy and paying caregivers a decent wage. We have the resources or would if the criminals in charge stopped the ego enhancing war machine. With or without the government we must take care of each other. Family or not.
3
The support for family caregivers in the Portland area seems to be available Mon.-Fri, usually from 8-5. Occasionally there is a support group on a weekday evening. I'm still working, and can't take advantage of Mon.-Fri. 8-5 offerings. I don't see well enough at night any more to drive to an evening event, and I live in the suburbs where there is no decent public transportation. Also, I have no time at the end of a workday when I have caregiving responsibilities at home. Where are the Saturday and Sunday daytime support groups, counseling, etc.? Where are the free massages and weekends at a hotel so I can really take a break? I have been doing this for 16 years now.... Where are the people who will drive my parent to a medical appointment, see him into the clinic, make sure he gets to the right place, wait for him, and bring him home again? Just on an as needed basis. My father cannot take an Uber or volunteers; they will not escort someone into a clinic and wait. But my father cannot be trusted to find the door to the clinic. Partly vision problems, partly cognitive impairment.
3
Part of caring for elderly loved ones is taking care of yourself, making sure you as the adult/child are strong so that you can be strong for your family member.
Think about hiring an elder care manager (formerly known as a geriatric care manager). This specialist can help navigate the many, many decisions that need to be made, whether the loved one is at home or in an assisted living/nursing home situation.
The expense is on an hourly basis - use this expert as much or as little as makes sense for your particular needs/budget.
My own mother lived her last 4 years in a nursing home, and my elder care manager served as my "extra set of eyes" to be sure that Mom was receiving the very best of care. One example: Mom lost a hearing aid - I was ready to write that check for a replacement, but my elder care manager knew that the nursing home was responsible for this expense, as they were responsible for Mom. The nearly $2300 we saved in not paying for this expense was certainly worth the expense of having an elder care expert on our team!
And how wonderful it was to have an expert to consult right up through Mom's last day - I was able to spend my time with Mom, enjoying each other's company, while our elder care manager dealt with the endless details/decisions.
8
This article certainly resonated with me. I am 73, and care for my 68 year-old brother, who has had Parkinson's since 2009 and is descending into dementia. He lives with me and I take care of him 24/7. I do everything, and I mean everything.
We have a brother and sister who live here in town, but the brother is a hopeless drunk and resents anything I ask him to do. He says it interferes with his schedule. What schedule? He's retired. Our sister is as mad as a hatter and drives my brother into major panic attacks. No one else ever comes over.
I am tired and isolated and have such severe back problems that by the end of the day I am bent over and the pain is so bad I just want to scream. My day doesn't end there however. It goes on through the night. With the war on drugs, that has turned into a war on patients, I can't get any pain meds and nothing to treat my anxiety. I'm told to suck it up.
I am so sick of cooking, cleaning and being on call 24 hours a day. All that, coupled with my pain and anxiety sometimes makes suicide look awfully inviting. When does someone do something for me? I may sound selfish to some, but try walking in my raggedy shoes sometime.
28
What about an article about spouses who are still working and are also taking care of older and ill spouses?
7
@M E this was an opinion piece. I'm sure you can submit your own opinion piece and see who picks it up. If nothing else you can share on your own blog/social media/or in a journal. Venting helps.
I guessed correctly that the author was a man. Women put in years of unpaid labor raising children and doing housework. I never see articles discussing their unpaid work which never gets an accounting in GDP calculations.
12
Thank you for the charming way you ended your essay today.
5
Families should seriously consider keeping their elderly loved ones at home, if possible. If they are looking into assisted living or the like, families must vet facilities as closely as they can.
An assisted living facility in Sacramento was recently cited and fined by the state of California for providing poor care/negligence in the case of an elderly man with Parkinson's disease. People with experience with these facilities, will understand that this is not an isolated case as regards the failures of facilities to provided proper care.
An article on this case appeared approximately 2 weeks ago in the main Sacramento newspaper:
https://www.sacbee.com/news/local/article217524310.html
2
Mitch McConnell - are you listening?
Deven Nunes- are you listening?
6
I am single with no children and retiring in 4 years. Scared of what might happen to me should I get really sick
5
How much per hour were your parents compensated when they took care our you as a child? What would be an appropriate amount per hour?
4
I wish someone was paying attention to the obvious signs of mental deterioration in President Trump.
9
Everyone here seems to have a loving relationship with their parents while they attempt to give them care in their final years. But what if you have parents who have really crazy religious ideas and berate you for being gay or for not believing in their opinions?
This unfortunately is my situation. My mother will probably survive my father, although she would really prefer not to. She wants to go to heaven with him or before him. Dad does nothing to discourage this thinking whatsoever. He has been horrible during his entire time toward nurses, hospice care-givers, and especially toward me who, at 62, is a retired college professor. He expects me to jump at his every command because it is the will of an angry God who will soon return to kill billions of people and establish a permanent celestial dictatorship. (Dad, btw, is one of the original founders of the lethal Robidoux cult. Look it up!) Both parents tell me that my hopes of a happy retirement without their faith are in vain. They live in a world of non-stop FoxNews and John Hagee-style religious programming. Through all this, I do all kinds of chores and attend to their needs. I spend anywhere from 20-40 hours a week with two deeply unhappy and resentful old people who cannot understand why dad would be left crippled at 86 by a stroke (he refused to go to the hospital while he was having it).
Anybody else dealing with religious issues as their parents care needs increase dramatically?
8
I watched my mother take care of my loving grandmother for about 5 yrs until she passed away. Luckily my grandma was able to afford assisted living and nursing care. My mom is an anxious perfectionist by nature and doing the things outside of assisted living care, like doctor appts, taxes, budgets, paying bills, visiting her, almost broke my mom's spirit and put so much strain on her marriage. When my beautiful grandma passed, we were glad for my grandma (she was bedbound and had no quality of life) but also glad for my mom and dad. Grandma wouldn't have wanted her daughter so broken down. And, my mom had the good fortune that grandma could afford good nursing care. My mom didn't do the ADLs like feeding, toileting, showering, dressing. If she did, I know she would have had a complete mental breakdown from the stress because she almost did as it was. So many people take on way way more than my mom ever did, and those people need more support. I lift up anyone who has done caregiving. At some point, if needed I will care for my parents and uncle, and I hope I'm stronger through it than my poor mom.
19
After my family's recent experience with assisted living, I believe families should try to keep their elderly loved ones at home with them as long as possible.
Our loved one was the victim of gross negligence as regards the care he received in assisted living. His stay in assisted living greatly hastened his death.
People across the country with experience with these facilities will understand that this is not an isolated case as regards the failure of facilities to provided proper care.
If families are looking into assisted living or the like, they must vet a facility very carefully before placing their loved ones there. One of the most effective means of vetting is to speak with families of current or past residents of a facility. They will have a lot of information from first-hand experience.
12
The alternative to assisted living is hired help that can also be very costly. By definition, people in assisted living or nursing homes can’t stay alone alone and need care. Not everyone can afford qualified domestic help.
5
Mother was 83 in hospice at my house after a Multiple Myeloma tumor transected her spine and left her paraplegic. She had been my rock. She left dad,a raging alcoholic, in the 70s, took her two little girls and never looked back. It was a hard time for us.She moved in with us around the time of her diagnosis and we all fully expected her to return to her home. My sister had passed 20years before so it was up to me. I’m a nurse so the care part wasn’t a problem. I got dependable help five hours a day.The thing is that I couldn’t get the supplies she desperately needed to care for her. Even before the hospice the insurance lagged. We needed a TENS unit but it wasn’t covered. Yet the pain pills were....go figure. I finally bought one for her. She never tolerated pain meds. In the end we needed skincare help,guess what not paid for in hospice. The wound on her backside was horrid. Suffice to say it’s called the Kennedy Terminal decubitus,DONT Google it. They wouldn’t even pay for the solutions to pack it because it wasn’t covered. She hated the smell. The nurse from hospice found some that was still ok and brought it. Under the table. The care was fine but it wasn’t dignified. Her last words were to my husband,I love you too. Taking care of me wasn’t in the mix really. I had an end to my dark tunnel. I can’t imagine what those with parents that are physically well but need care like mom. They teach us to eat,they are our first loves. I guess it’s done because we, love them too.
7
I came to USA back in mid 80s from India when I was only in my late teen years to be with my mother who had moved to USA after separating from my father in India. They never had another child. After separation, my father chose to stay single. In the early 2000s, I sponsored for his green card so that he could come and stay with me and my family permanently. 3 years later, he absconded on us and secretly moved back to India. That further strained my already rocky relationship with him. Out of embarrassment and family property dispute, he over stayed his visit in India and his green card expired. Late last year, because he was lot older, alone and in little bit of ill health, out of pity for him and guilt, I got him another green card. He came and stayed with us for only 2 months and then went back because of the lingering property dispute. While he was here, I did my best to care for him. It was quite stressful and straining as I am in my late 40s now and have my own health issues. Now he wants to return but I am at my wits end. I can't afford to provide him the sort of care he is going to need. I need to worry about myself too. He has been given ample opportunity and he has blown it everytime. All you folks out there feeling guilt tripped for caring for your parents, do it if they deserve it, otherwise,leave it to God or nature. That us what I am going to do now with my father.
10
I’m about to turn 50, single, only child. My mom & step-dad are in their 70s and very very active & healthy, but live 3,000 miles away. Luckily, I can often (though not all the time) take my work with me, so I’ve made a point of spending Thanksgiving through New Year with them to enjoy them while they ARE healthy. They purchased long-term care insurance a long time ago, hoping to not burden me when their health fails, but I do expect that may not be the panacea we hope it to be.
6
It would be very helpful if you addressed the inequality between siblings regarding caring for elderly parents. Our families are spread out all over the nation and the world due to work, school, retirement locations. Frequently, most of the care decisions and day to day work falls to one of the elderly parent's children and/or relatives, while the other dispersed relatives remain uninvolved or come visit for the holidays. What's worse is that they suddenly decide they want to be involved or they don't lift a finger at any time but do stir the pot whenever they feel like it, causing a great deal of consternation and resentment for their failure to be a real participant in the loved one's care. Please follow up.
54
Kids caring for their parents? Try being a working 72 year old spouse of 72 year old wife who is into her 5th year of Parkinson’s! The woman i’ve know since 8th grade and spent 49 years with is slowly changing before my eyes.
I’ve got two boys 38 and 43 and two,great daughter-in-law’s.
19
@Kevin Bitz
Recruit 'the troops' and remind your sons to pitch in. A neighbor, past sixty-four, now a widow, has a bumper sticker on her car given to her by her late husband which reads 'Be kind to your children, and they will put you in a good nursing home'. There is always an element of truth in these gags, and she is much loved by her two daughters, one in the military, the other working in retail.
This is not the time to be a shy violet. It is possible that your boys are in denial. You have your own health to consider and inform your offspring now grown that you might have to retire to look after their mother. If there is no response, place a call directly to your daughter-in-laws. We are speaking of 'the family' now, not all of us are in possession of one, and it is good to remind all and sundry that you and your wife gave them the gift of life.
An acquaintance, who continues to work to make ends meet, likes to make jokes about a fine nursing home in our town, and I am the first to ask whether he and his wife plan to visit if this is going to be my last residence. 'And don't forget to bring Henry', their Lab, who will be 350 years in dog years.
Elder care, especially for parents or spouses with dementia, is a crisis in this country. Dementia is a coming wave that we are not prepared for. Caring for a family member with dementia is a thankless and horrible job that often kills the caregiver before the loved one dies. It deprives caregivers of a life, cuts their careers short, and bankrupts many. I speak from experience. It’s not a privilege to care for a parent with dementia, it’s a nightmare. We live too long and treat frail elders too aggressively. Everyone will die someday. Many of us want the chance to choose an assisted death before we are stripped of our dignity, our minds, and our ability to self-determine. Harsh words, but many who have been there are thinking these things even if they are afraid to say it.
68
I have read a number of comments and felt their pain. My father expired in 1986 when he was 60 years old. He was in bed for a few days. My mother was diabetic and had high B.P. She was never alone. She was always with us either with me or with one of my siblings. She could do all works all by her own. Only problem was her restricted mobility since both legs were operated due to fall. As such her walking pace was very slow.
She always used to study some Hindu religious books and say prayers for an hour or two. She used to say only one thing everyday that she should pass away peacefully without troubling anyone. Last year on September 25th she expired peacefully in sleep as desired by her in our house due to heart attack. At that time her age was 85 years well beyond India’s life expectancy of sixty eight years. Even I have outlived India’s life expectancy by two years.
Myself and my wife also feel that we should pass away peacefully but death is not in our hands. Few years back we donated our eyes to a hospital and thinking of donating our bodies to some hospital.
11
This was the hardest job that I ever did, being a caregiver to both my parents who lived with us from 2006-2017. The hours spent in travel, waiting in the doctor's offices, emergency rooms, hospitals, pharmacies, hours on the phone searching for services but didn't qualify because they were a few hundred dollars over income, hours on the phone battling their health insurance, it was one battle after another. I was their advocate battling every inch so that they got the best of care. And all this time I was working a full time job until 2016 when I no longer could do both work and caregiving, my husband and I were raising two teenage boys and trying to survive. Dad passed away in 2013 and Mom passed away in 2017. The hardest job I have ever done but it was all for the best parents in the whole world.
48
Consider giving caregivers some of the benefits given to the military: a stipend, health insurance, ongoing support during and after the caregiving. Public acknowledgement and appreciation of the sacrifices would help also.
33
After the sudden passing of my mom early last year, I suddenly became the primary care provider for my father who is 86 and suffers from dementia. Most days he no longer knows who I am. He needs help in almost all of the daily activities and wakes up many times at night thinking that it's morning and time to get dressed.
I am very grateful for the company I work for allowed me to work from home full-time so that I can can care for him. I don't know what I would have done if that was not the case. I am a single woman with no siblings to count on or family.
This past year has been a bitter sweet time. I don't even have 5 minutes to myself. I shower with the shower door open and sleep at night with my bedroom door open. In the beginning I resented how my life had changed after my mother's passing. But then I got to experience my dad as I never had a chance to do before. Playing card games with him. His insistence on helping me to carry the grocery bags from the car to the house, him giving me his handkerchief to shield me from the pouring rain.
I wish that I had affordable help to care for him. So that I could have some time to myself. Right now my life revolves around him.
60
How can you work with your father around?
5
She sent 'Lost for Words' my way and it begins with a middle-aged man holding a large panda bear in his arms, a plush one, for dear life until a nurse quietly approaches and he rises to follow her down the hospital corridor. This little known movie is engaging, witty at times, and difficult to watch.
An ode to her mother remembered, the journey they took together, and a message that she did not share with her sister. The son in this story appears to be a natural caretaker, surrounded by people who are in need of his guidance.
Two courageous sisters with a great love for their parent; courageous in different ways. One in the humanitarian field, the other retires and looks after her parent at home. The former feels that the time will come when she will be looking after her sibling, but as the latter once wrote 'be careful because things are not always what they appear to be'.
Thanking Mr. Jauhar for this sensitive and tender portrait of his parents. May they hold hands and dance together in eternal peace, while their children look to these stars on bright evenings.
7
Let's not forget that while people are taking care of their aging parents, they may not be working themselves, or they may only be able to work part-time. Then when *they* retire, they will have smaller Social Security checks and smaller or absent retirement plans.
39
I work in homecare and hospice. I am also on a neuroscience team dedicated to teaching MD's how to help patients presenting with cognitive issues. Insurance and Medicare will cover extensive expensive testing. But after the diagnosis is made, all the care falls to the family. Hospice care is not an option for these patients. Homecare is a short term intervention that requires a skilled need. Most of these patients end up coming to the ER. Repeatedly. They fall. They forget medications. I feel that Medicare would save a fortune if they relaxed the skilled need requirements allowing RNs in the home and if they covered a certified and trained nursing assistant (CNA) to be in the home.
Many of these patients end up selling a home and moving to an Assisted Living facility, but this is not a panacea. It is expensive and not a medical model. They still need intervention and many have to leave and go to a Nursing home as they decline.
It saddens me every single day when I tell patients and their families that nothing will be covered by Medicare or supplement for custodial care. I search for ways to get them help, but it really is always insufficient and care falls back to family or friends. I hope someday to see a change, but after 38 years of being a nurse, and a caregiver myself, my hope has dwindled. I would still recommend a homecare referral. At the very least it could be a short term intervention that should at least put some order to what surely feels like chaos.
48
I live 125 miles away from my best friend but I make the trek to his home in Los Angeles every 10 days for the past three years. He's 83 years old with no family. Forty years ago he was hit by a drunk driver, confined to a wheelchair, wears heavy leg braces. On Sept. 27 he will have above the knee leg amputation. I'll take him to the hospital, then visit him at the rehab. When he returns home I'll be there as often as possible to spend days listening to music, watching foreign films on TV, reading poetry together, playing Scrabble. I'm 73, in good health but tired.
52
@donna myrow
What a beautiful friend you are.
You take care of you, too.
9
Add distance to the equation. My aging mother is 10,000 miles away and I get 2 only three weeks of vacation a year.
17
Thank you for starting this conversation about the sandwich generation. As life spans increase and the span of middle age widens, many adult children will become de facto caregivers. It's a hard thing to see an intelligent, capable, productive older adult decline. But in many cases, these older adults have much to offer society.
11
I very much disagree with the sentiment that insurers and/or the government should pay for caregivers. For millennia families have taken care of their own, without insurance or government involvement. This, in fact, is the norm in most of the world. But we have become a society that places our infants and children in day care, and the elderly in nursing homes. The infants and children are raised without the benefit of a loving and nurturing environment, and we wonder why there are so many lost souls and drug addicts in this country.
10
If society expects family to be caregivers then society needs to help make sure there is some support for the caregiver. It's great to have unpaid help, but if the unpaid help ends up destitute they'll end up relying on government services anyway. Recognize and allow some dignity for those who stepped in and saved government expense by providing some stipend or pension.
22
@Michael Back in the "good old days" people didn't live as long and often died as a result of neglect. There are medical treatments that extend peoples lives decades longer than they did even 20 years ago. A millennia ago, people would let elderly people with dementia wander into the woods to die or put them on ice floes and push them out to sea. You seem to have a fantastical view of how people took care of their families hundreds of years ago. Also, unlike the "good old days" most families can't survive on only one income so both adults work, making it even more difficult to take care of an elderly family member that has disabilities like dementia where they can't be left alone - sometimes for even 5 minutes. This article is talking about providing funds so people can take care of people at home without it being a financial disaster for the families taking care of them.
63
According to my 80+ year old parents, in the 1940's+ there were "county homes" where people dropped off their elderly once they became bedridden or suffered from dementia, and according to them they were horrible places. So I don't know what golden age you're thinking of, but I doubt it was in the US if it existed at all..
59
Like child raising, elderly care in this country depends on outdated norms - a two-parent household with a stay at home woman who has reams of time to devote to caring for parents and parents in law, and who does not have to work to live, combined with several such households, all with a built-in caregiver. Now that families are smaller, divorce and singledom is more common, expenses are higher, and life expectancy is longer, it is incredibly cruel to expect children, especially single children, to sacrifice 10-15-20 years of their lives to elderly care and torpedo their own chances for financial stability as they age themselves. And no, it is nothing like raising a child - children grow out of dependence normally, and childbearing itself is a choice. Yes, there are nice moments of bonding with your now dependent parents, perhaps, if you had a good relationship with as a child, but this is no guarantee (and age-related diseases can also affect the personalities of even the sunniest parent).
We are completely willing as a society to wreck the lives of caregivers in order to save ourselves some tax money. It's gross.
98
@ml and it also depends on the outdated norm of having 2 elderly parents living in the same house, supporting each other through doc appts, treatments, watching out for each other in general. Just like every family having a selfless SAHP, that's the ideal but not the norm.
21
@ml Care of the elderly often fell, in the age of most families having many children, to an unmarried child, usually a daughter, who was considered to have the family job of continuing to stay at home to care for her aging parents. Clearly that is a system that no longer is viable for most families in a society with the opportunity and expectation that unmarried women can and will have households away from where they grew up.
17
My husband and I have spent the last two weeks helping his brother arrange to move my 87-year-old mother-in-law from her assisted living apartment into full nursing care. The physical demands of her care are too great for any of us to meet; due to severe arthritis, she needs help going to the toilet, bathing, dressing and doing almost anything else. Her mind is intact, but her body is failing her. She and my father-in-law were able to age in place until his death in early 2017, at 92. Together, they had the capabilities of a single, competent person. Now, she can barely walk down the hall to supper, has trouble swallowing and sleeps 19 hours out of 24. It's sad and hard to see someone who was previously so capable and competent unable to fend for themselves. Our goal is to make sure she's comfortable and that she knows she's loved.
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One should be lucky to go away at the right time from this mother earth without the experiences of any personal pain, disability or causing anxiety, hardship or pain to any of the deeply loving potential care givers such as a son and/or a daughter or other relatives. There are no ideal solutions. This is mystery in our lives. What can one do to avoid getting shaken? One can not change good and bad fortunes. They will continue as long as the world exists and our karma exists and the worldly ways remain. Try to realize the "reality" within you and let live takes its course.
9
@essar
Death with Diginity Option should be available in all 50 states. Currently they are available only in California, Colarado, Hawaii, Oregon, Vermont and Washington. Such an option will be of use to people who has terminal diseases (and suffer a great deal).
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@essar End of Life option [currently available in California, Colorado, hawaii, Oregon (death with Dignty), Washington (Death with Dignity) and Vermont (Patient Choice and Control at End of Life Act)] should be allowed in all the states in U.S. This gives an option for the elders who suffer towards the end of their lives.
2
Problem, the evangelicals of this country lobby their paid for politicians to ensure that die with dignity proposals are defeated. Only god decides when people should die! Ridiculous thinking like this continues to punish us all.
3
I am reading this article today after having flown from Chicago to NJ on Tuesday morning to take my sister to the oncologist. After the visit, we spent 36 hours in the emergency room for a pulmonary embolism. She had thoracic surgery on Thursday morning. At this point, I don’t know when I will return home or to work.
29
I am also a physican, helping to care for my elderly mother who has severe memory problems. My spare time is limited, but I spend every Sunday morning with my mother and my sister stops in several times during the week. We are fortunate that my mother has the means to have a helper in seven days each week. That's not to say that it's been easy, because it hasn't. And before that there was my father, who was terminally ill with cancer. One of his home health aides stole my mother's heirloom engagement ring from the house. That's when we put the silver away.
I get at least four phone calls every day from my mother. Often all about the same thing. And I yearn for an entire weekend "off." But I know when my mother is gone it will be a loss, so I bite my tongue and carry on. It is exhausting and depressing. But we carry on. This was a great article. Thank you, Dr. Jauhar.
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Our legislatures could certainly do much more to ease this burden by better regulating our senior care facilities. Many families simply do not have the skills and strength to provide our loved ones with the care they need, but when we look at the options available commercially, they’re inevitably flawed with corruption and ineptitude. Surely this is a crisis in need of some regulatory solutions.
30
The profit from nursing homes needs to be allowed in order for them to exist, but the facilities, number and ability of staff, meals and activities must get better regulated to make sure there is a decent standard of care.
18
The long term care industry is one of the most regulated industries in the country already. We do so much documentation as it is already.
1
Medicare has two programs, one old and one new, that address the caregiving crisis.
Home health services after hospitalization are utilized under "restorative" care for a set time period. But chronically ill patients are entitled to ongoing home health services--hour long skilled nursing, PT, OT, bathing, speech therapy visits up to 35 hrs/week--under "maintenance" care. Most states hide and do not implement this. Demand it. Court cases have mandated it nationally.
Medicare advantage plans are now testing a newer program of home health aides and respite care. These will expand to general Medicare.
This makes economic sense, as well. At home caregiving is about half the cost of institutionalized caregiving, and it is generally much better for the patient, as well.
Old age is a different country. Learn the rules and opportunities.
Don't give in to rational suicide programs and demand better care in hospitals. Elder patients are entitled to top medical care, not triage for slow death.
27
@HLR, I'm hopeful that the options for healthcare delivered at home will continue to improve.
Some in-home services, such as PT, OT, and speech therapy, DO have 'caps' in terms of the number of days of service, and are discontinued entirely when the individual no longer is improving.
A stay in a skilled nursing facility, which in our family's experience is MUCH better than a long-term-care [LTC] facility [aka "nursing home"], is similarly capped. Sadly, even top rated LTC facilities can be under-staffed, especially on weekends and holidays.
While I'm certainly no advocate for assisted death, I understand why some will choose this for themselves. And, we must never get to the point where it is permissible for someone to be pressured to make this choice.
Finally, I think that palliative care isn't well understood.
It's crucial that patients are informed of, and *understand*, all of their options so that they can make informed decisions ... preferably long before they *need* to do so.
13
@Karen Lee
I'm more with HLR on the in-home care. Recall looking into this -- too late as it turned out -- when my brother could have used it, just a bit more than three years ago.
There is, of course, some type of 'proof' that must be documented, that someone has been deemed improved to the furthest point expected, and their progress has plateaued. They are then still due the various streams of maintenance care that will keep them at that current level.
I don't know if it is not as lucrative to bill for, thus staffing is even harder to get ... but unless it has been repealed, I do believe it exists.
Expect to fight for it, I guess, like most health 'care.'
I welcome articles that highlight the emotional and financial roller coaster that accompanies caregiving. There are many highs and many lows. Sometimes all there is left is the lows. I am caregiver to my father who at 95 has advanced dementia and is blind and to my mother who at 92 deserves some respite.
My plan for myself if I become a burden to my children (I am now 61 in not great health) is assisted suicide. I hope to never burden their lives in this way. I love my parents dearly and have devoted my life to their care. But at an enormous cost to me physically, mentally and financially. I do not want this for my children.
That being said, we can plan our final years all we want but in the end what will be, will be. We can do everything right; plan ahead financially, have all the important paperwork ready to roll, have our end of life wishes made loud and clear. But, ultimately it's all one big roll of the dice. Man plans and God laughs.
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Nearly 60 years ago I was relieved when one of my grandmothers died. She had survived a severe stroke a year before. My mother and her sisters were doing the caregiving. It was bringing all five of them down.
The doctor said they should have put her in a rest home since it only cost $400 a month. This was more than their combined income after they bought food and paid bills.
25
I am delighted that a physician is writing this article!! As a social worker, this is something I know very well both professionally and personally! The tolls this care giving take are on every level. Services are inconsistent from state to state from county to county. Your rally cry is important and I hope you will take it to any professional organization to which you belong! We are in a very mean time on many levels. Nationally there is scant understanding of what you write about despite the fact that most law makers have parents and bodies. Can you even imagine how people manage when they do not have your education or resources? It is a harrowing exercize for many! I wish you luck and thank you for this and your advocacy. I will continue to advocate as well as I do in my work with chronic illnesses.
24
My eyes are filled with tears as I read your story... I recently buried my Dad after caring for him for 7 long years. As much as I loved him, it was the hardest unpaid job I have ever had, I thought at times he would out last me! He require 24/7 care so I had to hire an army of caregivers to help along with trying to manage his medical care, dwindling money, sell his home, move him numerous times, and deal with day to day crisis. Bless everyone out there that is going through this...
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This is an important article and highlights important unseen costs of caring for the aged. But, it overlooks many people who are aging today. Not everyone has children. And, even those with children may still be caring for troubled or disabled adult children. Our country has no mechanisms for helping these people age safely.
43
The best gift I ever gave myself was moving to Houston to help my sister with our mom. I became the cook, chauffeur, housekeeper, launderer and masseuse for three years. Oh there were some unpleasant times. After watching her pass quietly in hospice I realized that I had become a better man and human.
41
Thank you for this article. Everyday for the last five years I have spent some part of my day on my father's care. He has Lewy body dementia and he has physical and mental disabilities. I also lament all that he and my mother worked for (she died of cancer at an early age) will ALL go to his care as my sister and I struggle to send our children to college. We have disability status for working age individuals but not when we need it the most. Also, the tireless people who do the endlessly physical and stressful job of providing the care are only making minimum wage. All other industries are subsidized by the federal government why not this one? There is not enough money, facilities nor answers for when the majority of the country will be over 65.
34
Thank you for this beautiful article! The doctor's family is very fortunate to be able to keep their parents together. More support should be available to provide quality in home care to elderly couples.
10
10 years ego,at the age of 72,my wife and I sold our home and moved in to an active adult community,naturally close to our children.The apartment ,with wide doors,walk in shower and other features makes it possible to age in place.However aging in place is not cheap and not easy on the children that have to make all the arrangements and oversee the care.The other option is to move in to a continuum care facility where you purchase a residence,pay a hefty one time entrance fee and in addition another monthly fee.For this you will be taken care for the rest of your life.Another option that some elders overlook is to move to a country where cost of living is nor extravagant, but that is not for everyone
11
I only see one comment about using available senior housing. The husband in Palm Springs paying for his wife. Everyone needs to do give them selves the gift of letting professionals care for their loved ones. It costs a little more but everyone will benefit. Family has more time and less stress, seniors have 24/7 care and meals. Yes it costs money but that is what we save our whole lives for, so as not to be a burden to our children.
3
@Blue State Refugee Not everyone saves for old age. Not everyone is even in a position to do so. Many adult children are taking care of elderly parents who simply have no choice but to rely on their children for help. Many would love the gift of having professionals take care of their loved ones, but it's just not in the cards. Or in the bank account.
41
I've just retired and am now revisiting my will, end-of-life care, etc. I plan on emailing and putting into writing and giving copies of my final wishes so that my family knows what I want as well as having the formal docs. I'll have in place layers of watchfulness so that hopefully, an unscrupulous caregiver will not be able to bankrupt me. Plan now and discuss with children all of these things. Look at the problems Aretha Franklin's heirs will have, and the expense, just because, I guess, she couldn't face her own mortality. Do everyone a favor and plan ahead as best you can.
31
Choking up over your wonderful parents and that sweet eavesdropping moment.
32
Sacrifice bro. They did it for you, it's your turn now. ( I know, it hurts in the pocket and your life balance goes a bit out of whack )
13
NYT, thank you for publishing this.
15
Being a caregiver, which I was, is sadly comparable to being a combat medic. You are always on edge and your sleep patterns are shot to hell. You spend countless hours visiting emergency rooms and acute care wards, going from one health crisis to the next. And then there are the little annoyances: a seldom seen cousin breezes in for a day like it was some USO show; a part-time home health aid helps herself to the morphine in the comfort care kit and you end up giving her CPR until the ambulance arrives. And after your tour of caregiving duty is over, you suffer PTSD and you cannot make people who have never experienced it understand. So you stay silent.
142
I can see a lot of myself in what you’ve written. I am a single only child and I had to care for both of my aging, dying parents at the same time. It decimated my life and to this day I have PTSD in spades as a result of the experience. I had a little money to hire help and I was near enough to retirement age to be able to stop working and take on their care full time. I can’t even imagine what it must be like for people who don’t have those advantages.
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I'm a caregiver for my 86 year-old mother. After my father passed away in early 2017, my mother when on dialysis and her dementia worsened significantly. I had little choice but to move in and look after her. I wish I had thought of your perfect analogy of the cousin breezing in as if on a USO visit.
20
@Troutwhisperer: You have nailed the experience completely correctly.
Yes: ALWAYS ON EDGE, never knowing what the next thing to happen or go wrong will be. Sleep is an elusive fantasy, even though you're so tired you can barely get through each day.
And yes, it IS absolutely PTSD afterwards.
6
There’s no point in having a Dr ask if you have the ability to look after a loved one, if the doctor has no alternative to suggest. And there is no alternative....except $$...lots of it!
I recently put my wife, demented, into assisted living in Rancho Mirage, Ca. It costs me 3 grand a month. I tried taking care of her myself for years. I did a bad job, it wasn’t good for her, and it wasn’t good for me. She’s not that happy. Wants to be “home.”
Easy to understand.....?
Instead of fighting over Obamacare, romneycare, and the republican version....no care, we should be dealing with the long term care situation in the United States.
After committing to 3 grand a month, plus the up-front fee just to get in the door, I still have to manage her situation. Be her advocate and make sure that what is supposed to happen actually does happen.
The 3 grand crimps my lifestyle. But I manage to pay it out of monthly cash flow, and am LUCKY that i have the capacity to take care of my wife this way. It’s just money.....
But, what if you have no money? Then it’s a disaster. Need to get divorced, the demented person will then live in a Medicaid (welfare) dump. Smelling of poop and despair. Not sure which smells the worst.
This is a shame. Nonpbody talks about it, nobody knows what’s going on. John
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@John Perry: You are so, so right about all of it. And it is the shame of this nation that older people and the disabled are so little prioritized in our federal budget.
For anyone: look at your checkbook and you'll see what your priorities are. You, Mr. Perry, have made it a priority to be sure your wife gets the care she needs, and you are clear-eyed about the importance of spending a large amount of money on her for this purpose.
But when *America* spends tax money, it does NOT prioritize the welfare of its most vulnerable and needy. America's priorities are NOT its children, its elderly, its disabled, its mentally ill, etc. - and that truly is our country's shame.
2
Where did you find a place for $3000/mo! We are paying $7500 and praying mom doesn’t outlive her bank account.
3
Throughout reading this article, I wondered why there is this desperate effort to keep people with dementia alive. Modern medicine has provided those 6 medications per day that prolong the lives of those who have little mental capacity left. I visited nursing homes when my aunt’s mind was in steep decline. It was a horrifying experience. Not because the patients were being poorly treated but because I saw the elderly sitting in chairs staring into space, wandering aimlessly around, talking nonsense. And then medication times come and staff is distributing meds to keep every body alive. Blood pressure meds, heart meds.....
70
@Kathy Baker More states need to allow folks who choose it, to decline this endless flow of medication and look at end of life options
3
You can't go around killing people because you consider them nuisances. Once that starts where does it end?
And your proposal is what exactly? To stop meds that prevent pain and suffering, so that the person with dementia can now also be in physical agony until they die? Not sure how much time you spent in these nursing homes, but if you've ever cared for a person with dementia day in and day out, you would know that anything that can be done to keep them comfortable , pain free , and healthy in at least some aspects of their lives, is a net positive
What will we do with the with the growing numbers of seniors worry advanced dementia and Alzheimer's? We need to have some difficult conversations.
13
Everyone should read Dr Atul Gawande's book "Being Mortal". It offers many scenarios which may be familiar to people reading this piece and will help in making some plans.
19
Wonderful and moving book.
5
@Tim True. Brilliant book.
At the end of her life, my mother also said that no one needed her anymore (similar to what the author quoted his mother as saying toward the end of the article). It was heartbreaking to hear, and not true--but it's how my mother felt at 76, and she did not live many weeks longer.
7
There are three phases in a parents life. The first involves giving more than you can get back and actually enjoying that phase of bringing up children, the second is a phase when giving towards your grown up family, equals the returns that you have invested in these children you have nurtured and the third phase, is when you disproportionately need more than you can give. It is this last phase, that only the wise amongst parents, realize how to be relevant. To impose upon grown children, is simply ungraceful. Grown children clinging onto aging parents due to societal pressure, guilt and filial duty are also wrong. This is the perfect age for all to understand what best options might be. A retirement home where declining physical and mental needs can be looked after in a more orderly fashion is surely a reasonable option. Obviously in your case financial constraints do not exist. Why be caught in the unenviable position of straining relationships within your nuclear family, your sister's and your parents? Why not keep them safe and well taken care off so the guilt is dissolved and time spent with them can be more meaningful. I get that nothing is a bed of roses, but surely it is a viable and practical option that might lead to greater peace for all.
10
@Meena Have you actually been in the situation yet? From the way you write, I'm not sure that you have. Please revisit when you have had some experience in this arena.
"...Hold my hand and dance with me"
Lovely and heartbreaking.
Here in the United States people will never be as important as money.
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@Chamber
........ or the military industrial complex!
1
Today would have been my dad's 99th. I am taking care of my mom who turns 92 in a couple weeks. To celebrate we leave for a cruise tomorrow. Mom uses a walker and is legally blind yet still is active. She has her moments, but who doesn't? This week her primary care doctor commented that she is in great shape. I promised my dad prior to his passing, seven years ago, that I would take care of mom. I look after her 4-5 days a week. Stressful, you bet. We did find an elder care company that gives me a break every other week. Mom is also lucky in having some really great neighbors who pop in and say hi on a regular basis. Sunday is our best day when I do a little cooking and enjoy an adult beverage or two out on her patio. Wouldn't have it any other way.
44
In retrospect, we filled our long lives with careful choices, including moving back from the USA to Guelph, Canada in 1988. Sadly, my wife has battled two different cancers these past 17 years, in and out of hospitals, emergency, major surgeries (some in Buffalo), and is now receiving palliative care at home. I am 81 and been with her all the way, still eagerly doing most of the care. But we get generous in-home daily nurse care, daily personal support worker assistance, daily respite care for me, weekly doctor visits. Absolutely everything has been paid for by our Ontario Provincial medical plan, including 17 years of expensive drugs, IV chemo, surgery at Roswell Park and more. Our in-home hospital bed, air mattress, wheel chairs, stair glide, etc has all been readily paid for by our University health insurance. It has been wonderfully supportive, really, and we appreciate it mightily - this time of our lives calls for compassionate help, which we have had in heaps, especially from government medicine. . As I said, friends, think before acting, relocating and voting.
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@Billy Jim. Thank you. I’ve thought about relocating to Canada, but current immigration law seems to lit it to skilled workers in certain fields. I’m 64 and retired.
As a retired Family Physician, now 79 years old, I am trained in PREVENTION! There are some planning steps we can take.
First maintain your own physical health to your personal maximum. This includes strength, endurance, and BALANCE!
If your parents are older try to get them to go to a gym with personal trainers. Even if you have to pay for it. It will pay off.
Physical fitness also helps mental fitness. Diet is important too.
All of us older folks should dedicate as much energy as possible to staying fit.
It is possible to regain fitness with time and determination.
I was feeble, unable to rise from a chair without pushing myself with my arms. My balance was very dicey: I was afraid to go down stairs. Then I joined the UNITED MEDICAL GYM in South Portland, Maine. Their trainers are awesome. After 2.5 years, I now can climb the hill without shortness of breath. I am steady on the stairs. Fitness is essential. It is a gift I am giving to myself and to my son.
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I am 68, spouse is 76. Why do Americans want to live so long? Why do we cling to life when it has so little left to offer? Why is quality of life not given much more attention versus quantity? My state has assisted death help, but you have to have a terminal disease and be able to take the meds yourself. I am considering going to a European country that allows self determined suicide at the first sign of coming incapacity, if I my health issue doesn’t qualify for state sanctioned assisted suicide. I definitely plan on stopping all life extending meds by 80, in hopes of a natural death. I have felt strongly about this my entire life; it is unlikely I will change my mind. I do not want my kids having to take care of me or my husband, although he may choose differently. I do not want the modest wealth my husband and I worked so hard to obtain passing to the health care monster we have created in this country. I want my kids to have it. We need humane, respectful options for those who share my views. Some religions consider suicide a sin, but I consider it a logical choice when quality of life is fast fading while medical science can still keep you alive for decades.
89
My shelf life is 85.
1
@DB: Do you understand that (statistically), unless you have some awful medical condition yourself, your husband is almost certain to predecease you? Thus your focus should be on planning for him now, and for YOURSELF in the long run.
2
@DB well said. Not everyone wants to "live" in the manner described
1
Touching story, Sandeep. Eldercare is almost a forgotten topic in America. In our healthcare system, 5% of patients account for 50% of costs -- and even that, at diminishing returns. Meanwhile, the care for not-seriously-ill-but-still-need-help elderly -- what is often taken up by families -- is not prioritized or covered. The real problem is that we have a supply-centric healthcare system that maximizes profits, not societal gain. Those that need acute, high-cost care get the attention, while those that need only modest, routine care don't. We need instead a user-centric system.
25
There's comfort in reading that on some levels "15 million or so unpaid and untrained family caregivers for older adults" are reverting back to an era where adult children cared for their parents at home because not only was that the "right" thing to do, but the expectation and natural course of a family. Parents cared for their children when they were young and then adult children care for their aging parents who require help.
I envy those 15 million or so individuals who have that "luxury" of caring for their folks. My husband and I always envisioned us taking care of his mom. Gosh I loved her (I think I'm the only person I know who really and truly loved her mother-in-law). However, that wish was never fulfilled. She was diagnosed with Parkinson's in 1995 and was completely wheelchair bound. She required 24-7 care at a nursing home facility. She was 86 years old and lived in Florida. She was unable to speak. Prior to her illness, she was the most active senior I had ever known.
Moving down to Florida to be with her was not an option for us. We were miserable, she was miserable, but she also never wanted to relocate to cold, snowy Chicago. She hated being uncomfortable.
I am envious of any adult that has the ability and opportunity to care for their aging parent. I realize that there are challenges and expenses involved, but in many cases, parents faced challenges and expenses when they brought their children into this world.
17
Thanks for stark reminder. Every day my parents (87 & 90) are alive is a gift. It's a privilege to help them out now.
7
@trixila
I love your comment. I wish more adults viewed their living parents as a gift and a privilege to help them. I know so many people who lament and complain about how their aging parents are interfering with their life on a daily, if not weekly basis. Incredibly selfish behavior and attitude.
Thanks again for sharing your thoughts.
1
I read letter after letter where people moved to their parents. When their friends are gone, they have to be willing to move to us. I have no idea what's available in Houston. But I have friends and resources to help me take care of him here. He refuses to move and I can't quit work yet and move there.
1
Caregivers save government hundreds of thousands of dollars per person per year at a great personal cost. Especially true when the person being looked after is disabled and (therefore) impoverished. Caregivers do this for love. They should be compensated, however.
19
@Anne
Government tax and Medicare policies do not help adults (who may be aging themselves) take care of their elderly parents. Even though I was sole caretaker for my mother, in my home, I was not allowed to claim head-of-household status on my income tax. Home hospice and palliative care policies expect the elderly person to be dead within six months. What if your elderly parent needs 27/7 care, is feeble, needs assistance in toileting, bathing, etc., must have his or her meal prepared, but isn't actually actively dying? Why can't hospice and palliative care at home offer services for these individuals? Why not have tax policies that encourage adult children to care for their aging parents in their own homes?
37
What a coincidence. I just had this conversation with my colleague. Everyday I am anxious to think that my parents are growing older and they'll need more care in the future. Being in a different continent makes things way more difficult. India is in transition because kids in the urban areas are moving out but there is no social infrastructure to support the aging and elderly. With medicine, we are living longer but quality of life is getting worse in my opinion.
14
Thanks Sandeep for a very thoughtful article. It brings to light a real problem with the aging population in general and specifically with individuals with dementia.
I have had to deal with a similar issue but in an acute context with my parents visiting me from India. It is stressful but a part of life and the society we live in today.
I related very strongly with this article. Incidentally I do research in Alzheimer's disease and my grandfather died of Parkinson's disease few years back. I hope your article brings about a nationwide change in health policies.
10
From my mid fourties, I assisted in caring for various elderly or seriously ill relatives and was virtually the sole care giver for my mother for the last several years of her life. This took up such large amounts of my time that, in addition to having less time to devote to my clients, I disengaged from most professional associations and reduced my social life. When my mother died, I realized suddenly that, for the first time in years, I was without any caregiving responsibilities at all, and thought my life would once again be as full of various activities as it was in my earlier life. The reality, however, was different. I was so out of the habit of participation that it seemed a chore to pick up the phone and chat, reconnect with friends with whom I had lost contact, or attend a meeting or social event at organizations in which I was once active, but had not been involved in for years. It was easier to read, watch movies, or engage in other solitary interests. I am more fortunate than some others who have commented here, as I still have a long-term partner and a (much smaller) circle of friends. But my experience is that a caregiver needs to somehow find and set aside the time to keep his or her own personal life intact and full, because resurrecting one's engagement in life after the responsibilities end is more difficult than we may realize.
76
Excellent article with a sweet ending. My wife puts in an extraordinary amount of time overseeing her 90+ year old parents part-time care-givers and doing a lot of the care herself in the other hours. My sister did the same for our parents. Which is to point out that by and large it's not "children" of the elderly doing the care, it's the daughters. So initiatives like the one in New York State are very welcome.
95
Isn’t the fact that it’s the daughters part of the problem? Why are your sister and your wife burdened while you are not?
35
@Rebecca
Mike drop.
Your experience has, I hope, also infused your practice: if you see someone who is frail and/or losing cognitive abilities, you will take the time to see the problem holistically, confirm that they understand you, and include children/health care proxies. They aren't hearts in need of a fix. I had taken my father to a cardiologist for episodes of bradycardia. The Dr. was intent on putting in a pacemaker, a simple repair - but never responded to my father's core question: was this going to make him feel better, less fatigued?( No) He didn't notice that my father was legally blind.
I was also behind the curve in recognizing my own parents' decline - the DMZ between the functioning world, the land of the well and the land of the sick and frail, is a very narrow territory. Moving parents who have disabilities to a new home -expecting them to function with little help - is unrealistic. Doomed. It's usually 3 years too late.
Moves require adaptation: new spaces to navigate, old connections lost. Big changes can increase confusion and frustration, and accelerate deterioration in functioning. Someone able to do familiar activities in a familiar home almost by rote may have too much to learn. Some can handle this; but when adult children impose change for safety -meaning they see warning signs, they need to be brutally realistic with themselves -or get an evaluation from an objective professional.
Caregivers w/out income are worn down and reduced to poverty in our "system."
50
@cheryl Yes! I always advised my elderly patients that if they were going to need to move eventually, sooner was better. It much easier to adapt to a new environment at 80 than at 90.
21
My mother is going to be 102 in December. She often says she wish she was dead. That gives you an idea of where she’s at. I her 68 year old son is the primary caretaker and while lives in senior housing by herself she can’t manage the way she would like. The basic issue is the unwillingness and inability to accept the limitations associated with her age. Are relationship is contentious for no other reason than I am the person she can be angry toward. It’s both physically and emotionally exhausting. Because I have no help from others in the family it’s affected my relationship with them.
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@John Corbin Depression is common in elderly. Many depressed patients respond with anger instead of sadness. Talk to her doctor and see if a very small dose of antidepressant is indicated.
13
@John Corbin. I feel your pain and am sorry.
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@John Corbin It's not unusual that the other sib or sibs won't or don't get involved in their elderly/disabled parent's care. It's so much easier to default to the relative/sib who is in the same city as the relative and let the chips fall where they may. Then that relative asks why are you so angry/hostile etc. Or worse, is there anything I can do? The level of cluelessness is beyond belief, while the caretaker festers. I wrote a comment (top post) asking NYT to deal with this very real issue.
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My dad lived with me from the time my mother died until his death thirty years later. He built a small apartment in my house. I was a newly single mother with a toddler so the help was very much appreciated. Fortunately for me, my dad retained his sharp mental abilities and his desire to be independent and helpful throughout his 97 years. He worked part time until he was in his mid 80s. As the years went by, the level of my effort of care slowly grew. All nighters in the emergency room and early am visits to the hospital can take a toll. As well as daily visits to the rehab centers to make sure everything was going well. Fortunately, they were infrequent. My brother fixed his dinner, my dad took care of his other meals himself. He did his own laundry, bathed himself, exercised, kept detailed records of every cent he spent, and organized his own extensive collection of daily medicine. I took him on his errands after he was no longer able to drive. He was always his sweet, grateful self until his last hours. I am so thankful to him for so many things. I hope that as a grow older that I can have the same relationship with my son.
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@LP What a beautiful story. Thanks.
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@LP: what a wonderful dad and what a wonderful life -- you were blessed and he was blessed to retain his faculties until his 97th year.
About 50% of people that age have dementia, so it's the luck of the draw.
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In exchange for food and housing, one of my single friends moved in with her parents to care for them during their elderly years. What she didn’t think about then, but feels keenly now that she is 66, is that those years robbed her of her own social security. She faces a future far less comfortable than she enjoyed with her parents, and with no one underneath to look out for her when she reaches the point of needing care.
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That is an important point that few seem to be aware of!
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@Alisa Bair: You have raised a critically important point that often does not get considered.
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I was both fortunate and unfortunate that my parents were failing when I was in my 20s and early 30s. Unfortunate, because I was young when I lost them and young when I was navigating caring for them while trying to build my own career and life. And fortunate that I had the energy that youth brings to care for them. I do not regret it: they were good parents and when they died, I knew I had done everything I could for them. But it came at a price. I have no spouse, no children, and am now entering my 60s. Many of us "permanent singles" are the people in our families who took primary care of our elders at am early age. I've had a happy life and a good career, but as I head towards retirement, I am very much alone in this world.
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@cz this is why we desperately need an easier path towards assisted dying. Entering assisted living or even seeking ordinary medical care without an advocate is inviting yourself to be abused and tortured. In WWII, spies were given cyanide tablets in case they were captured. Everyone over 75 should have access to the same exit strategy, no questions asked.
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@PhillyPerson
Yes, but I would lower the age requirement to 65.
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@Noodles after watching my 91 year old mother's decline and being one of her care-givers, all I know is that I do not want to have a "life" like the one she has. I would like to be able to check out when I am getting to the point of no quality of life and of depending on others for everything.
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When my independent 95 year old mom started a small fire in her kitchen, I was able to get her to move in with me into a hastily thrown together studio in what had been my dining room. She had medicare, not medicaid, so while I was able to find a homecare doctor, I was not able to get any covered in home services--it was all upon us. When she declined further, medicare hospice only paid for a few hours a day of care, leaving my family, friends, and patient and kind caregivers hired out of pocket through a local agency to do the rest.
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Same here. It’s a terrible system.
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Why do the poor rate free home health aides and the working stiff - NADA
Tragic, heart-rending, terrifying, pitiful; yes, frail old age is all of those things. It is also inevitable, unless we die prior to reaching that stage. It would certainly make it easier to plan if we knew exactly which configuration of decline and death each of us was destined to undergo.
I do disagree with the comment made by the helpful friend in the article. I think it is misguided and wrong to try to give debilitated elderly people hope that they will return to a more able independent state, if that is clearly not likely to happen.
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Maybe the solution is to meet them where they are on that day - perhaps not today, but maybe tomorrow. After all, did anyone tell the author's father that he couldn't dance?
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Our parents have done a lot for us in bringing up to this level. Are we not supposed to take care of them in their old age ? If not we, who else will do ? Is it correct to call us caregivers as if we are doing something great.
I do understand that it’s too tough under present stressful conditions but who are they ? They are are not some aliens but our own parents and grandparents. To a certain stage parents can live independently but there is a stage they simply can’t. Even then to keeping them separately is not correct at least for those who can financially afford like the writer.
Seeking financial assistance for doing what we are supposed to do, I feel is not correct.
I wholeheartedly appreciate the efforts of all the people, who take care of their elders in spite of numerous personal problems. Health insurance is a mega problem there. That needs to be immediately addressed, then everything will fall in place.
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@Sivaram Pochiraju sometimes sons and daughters need financial assistance. Not everyone is well resourced.
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@Sivaram Pochiraju
Our parents, presumably, chose to have us. We did not choose to have them.
The cost of childcare is a fraction of the expense of caring for aged adults. Our parents were able to send us off to taxpayer-funded schools most days for several hours. Where might we send our parents every weekday on the public dime?
No. We are not "supposed" to take care of our elders. That's why we should be allowed to commit suicide when we know our time is up.
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I worry, though, about the phrase "when we know their time is up". When "we" know you said not when they know and want. There enters the slippery slope and opens the door to saying you are old and sick and a burden. You may not have meant this at all but the words are there.
The author's reference to himself and his siblings as being among the "ranks of the 15 million or so unpaid and untrained family caregivers" in the US is an example of how much confusion there is around the issue of caregiving. The statistic cited actually refers to the number of family caregivers who care for someone with Alzheimer's disease or other dementia (https://bit.ly/2cS7mlt). Yet the author (a physician!) does not identify his father's condition as dementia, he simply writes that he is "forgetful" (occasionally I am too, but I don't have dementia). As well, the number of Americans who provide "unpaid and untrained" caregiving for ALL adults age 50 or older is actually closer to 34.2 million.
Paid and unpaid caregiving is the elephant in the room in America, where we are terrified of aging, value youth above all else and outdated models of care predominate. Every state in country has an Area Agency on Aging where resources and support can be found for caregivers and older adults (check out this link if you live in South Florida: http://www.youradrc.org). And if you're a caregiver feeling isolated, please know that you're not alone: tune in here to hear stories of people just like you, slogging it out with courage and humor: http://agewyz.com.
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@Jana Panarites
The first link does not work. But this one does: http://www.youradrc.org/healthy-living
@Seabiscute Thank you for fixing the link! By the time I noticed it there was no option to edit the post. All best - Jana
Family caregiving is one of the toughest unpaid jobs there is, especially when you add dementia to the mix. You and your siblings are to be commended for what you are doing.
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While I commend this man for helping his parents in their hour of need - I can't help but think that his emphasis on cost burdens and time are a bit over blown.
First, it appears from his bio sketch - he is a cardiologist - not exactly a low paid profession.
And as a doctor, he is able to set his time - so I can't imagine he is time constrained.
Finally, I don't think much of folks who think caring for their parents is a burden.
To me, it's called responsibility. I was fortunate to have looked after my mother when she needed it most - and did with pleasure and an immense sense of pride.
I am pushing 70 and live by myself - thanks to being in good health.
But I am beginning to get myself acquainted with our Social Security.
As another writer has noted - this system gives many benefits that you have already paid for - including home visits etc.
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@Neil: most doctors are not able to set their own times; they are "owned." (I left a group practice to go on my own, partly because I was not allowed to set my own schedule. But being on my own means 12-16 hour days.)
Medical reimbursements are diminishing while office costs are increasing. For a patient-oriented doc like me--I now make about half of what I made 20 years ago. Do not presume all docs make millions. Many non entrepreneurial patient-focused ones don't make much more than a HS teacher with a master's degree.
Financial stress affects physical and mental wellbeing in huge ways. It sounds like you are lucky enough to enjoy health and a reasonable standard of living. Many don't. As a doc, I am ashamed at the lack of safety nets in our "great" country--compared to most other developed nations. Of course to provide them requires higher taxation and effective sharing. Our narcissistic nation is unlikely to agree to to do that--especially under current management.
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You “don’t think much of folks who think caring for their parents is a burden”
Well, I don’t think much of people who are so judgmental. My mother, who physically and emotionally abused me until I broke off any relationship with her in my twenties, has dementia. I’m the only family member, and I’ve been sucked back into her life. My time is no longer my own. She interrupts my work, my sleep with numerous phone calls. She seems to think that I have nothing better to do than listen to her complaints. She has financial resources that allow her to live in a Life Plan community which at least means that she’ll never move in with me, but I don’t have the resources. By interrupting my work, and needing me to go get her mail, I’ve seen about a 15% decrease in income over the last 6 months. Meanwhile, I spend about 1/3 of my income on health insurance and medical expenses. I’m getting my hip replaced in November she’s more concerned about her welfare when I can’t be at her beck and call than my welfare when recovering alone in my home. So, Neil, get off your high horse and realize that caring for aging parents is not simple or easy or, in my case, beneficial to my psychological health.
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@Neil
What home visits does Social Security provide? Not even Medicare does that, although Medicare Advantage plans will be allowed to if they want, come January.
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In the mid 80s, when I was 30, I moved next door to my parents who were in their late 60s and early 80s. Their neighborhood had soured and they were vulnerable, so I stepped up to keep an eye on them. By my late 40s, I quit working to caregive full time. There went my career, there went my life. By 53 I knew too much about dementia and old age, that's when they passed. Unfortunately, I knew too little about developing relationships. I'm 63 now, alone, no mate nor children to enrich my life or to keep an eye on me. I do have two siblings, one 66 with MS, the other is pushing 80, with mild dementia and hordes. I'm out of breath, and wonder, how will I navigate through this? Somehow, I will. All your ideas are good, though I fear nothing will change until culturally we learn to recognize how valuable our elders, ill or well, are. Only then will the resources
be available to meet the needs that will grant us all the dignity we deserve as we tic away.
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@Rose I salute you.
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@Poonagirl you're very kind, gracias.
Thank you for writing this piece. Those of us don't have our parents here, have to take out time during summer break to and give that same car giving in our native countries.
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One of the biggest difficulties regarding the home care of seniors is that CNAs are not allowed to assist in giving medications. This is the one of the biggest obstacle to getting help at home because most all seniors take meds.
CNAs are allowed to give meds in certain states in assisted care & nursing home facilities if they have been trained as medication techs. However, in the home environment, they can only bring the meds to the person. They cannot dispense nor administer. It is considered out of their scope of practice.
This has to change as it is impractical for family members to always be able to give them.
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We used a 30 slot electronic pill dispenser. It could be programmed to dispense medication at whatever time(s) needed. It had a loud alarm that went off letting mom know she needed to take her meds. Once she took her medication, the alarm stopped. When we filled the dispenser, we could see if Mom missed any days. Usually she didn't. She felt independent for a much longer time and because the pills were regularly taken at the same time, she seemed in better shape mentally.
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Before we talk about improving 'the system,' we need to remember the system that already exists, that doesn't always get used to its potential.
If you're reading this in New York (state), your county has an Office for the Aging. NYC has one for the five boroughs, also. Get on the horn with them posthaste.
A lot of seniors and caregivers have no idea that Offices for the Aging exist. They don't know they can get help navigating aging issues (and paperwork), or they get the notion that the Office for the Aging "is just going to put me in a nursing home."
Heck, no. The seniors don't want that, the families don't want that, the caregivers don't want that, the taxpayers don't want that. Nursing homes are a key part of the system, but they're the destination when all the independent living options have been exhausted.
Sometimes the seniors are embarrassed to ask for help, or they're used to being 'in charge' and think that asking for help reveals weakness. Hear them out, but point out to them that receiving help gracefully is part of aging gracefully.
Anyway, give your local OFA a buzz.
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More specifically, in New York State call the toll-free number for NY Connects at 1-800-342-9871. This number will connect you to your local County Office for the Aging. Outside of New York State, you can find your State Office for the Aging by visiting Eldercare.gov or calling 1-800-677-1116.
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@knockatize
The Office for the Aging does not provide the most important service an old, solitary person needs. They do not have funding to send someone to your home to be there 24-hours a day to take good care of you.
Embarrassment is not the issue; money is.
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@rea tart,
Your comment is dead on.
In my experience with my elderly mother (I’m an only child), no senior citizen/elderly care agency wanted to spend time on the phone with me once it was disclosed there was little money to pay for their services. They were not interested in helping my mother who only has Medicare and a small social security check. I understand their response and I understand that these agencies need to make monies to pay for their staff and facilities and insurance, but I had a rude awakening,the elder care system in this country is in my opinion heartless and brutal to our frail elderly citizens/families with little money.
(All of our savings was lost in 2008 like many other millions of people).
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My 87-year-old mother has three daughters, one son, three sons-in-law, and an adult grandson living within 5 miles and contributing to her care. She also lives in an assisted living apartment, so she eats in a dining room and receives onsite help with dressing, bathing, and falls. I can't imagine how family caregivers with fewer local relatives, or without money for outside care, get by. This system needs huge improvements.
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@Naomi when I look back, I see now that my mother was in good shape at 87. She lived in an assisted living apartment and her three daughters who lived within 1 1/2 hours (and frequent treasured phone calls from a son who lived many states away) were able to add a loving touch to the care she received there. The years between 87 and 101 when she eventually passed were a slow steady decline, and the demands on we three daughters grew. For the final two years of her life one of the three daughters was with her. Every.Single.Day. She was so vulnerable that we realized we needed to be there as her advocate because the staff at assisted living and skilled nursing facilities is stretched so thin. It has been nearly four years since she passed, and I'm not entirely over it yet. I miss her every day but am relieved both for her and for us.
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@9aclock, I'm sure it meant the world to her to have such a caring family.
As for not being entirely over her death, I'm not sure we ever are.
Our family has found that now, we'll be talking about something and recall how Mom used to enjoy that, or remember something she and Dad did or that we did as a family. It just seems completely natural at this point, and isn't sad at all.
Of course, then I'll randomly start crying at something related, when I'm by myself.
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Jed A. Levine, President and CEO of CaringKind
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@JAL1169
This is a blatant ad for this company. "CaringKind, NYC's leading expert in Alzheimer's and dementia care...free help to family caregivers...how to navigate Medicaid home care... " Medicaid is only available if your income and assets are low enough - there is nothing to navigate. Elder service agency social workers, nurses will help with the application process. Companies like this one are for-profit. They blanket the country with ads like this one. They offer no actual caregiving unless you can pay for it. They are connected to home care providers and assisted living/nursing homes and receive paybacks for procuring private pay clients. There is no help available for those who cannot pay cash.
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Thanks for sharing. To give you some hope and mental relief, it is important to remember the immense amount of psychological good you are doing by taking care of your parents at home. While different elements come into play that allow such a possibility, to keep them at home should always be the aim. Not only are people happier at home but they even tend to live longer.
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@Roger, One should also not be guilty if/when it becomes too unsafe or no longer feasible to keep a relative at home. Providing some care may be feasible for your family, but providing months to years of dementia care for very frail elders unable to perform self-care activities means 24-hour care for an unknown period. That is beyond the reach of many families (even if you can pay for it, can you keep up the staffing, cover sick-days, etc?). I speak partly as an only child-- there will be no unpaid help for me.
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It's not surprising that end-of-life care, which concerns the most vulnerable of vulnerable populations, would be a disaster in a country that otherwise places very little value on spirituality and religion. Compassion is the easiest of emotions to take advantage of, and the fear of loss is a sure way to lose rationality.
We should consider the value of eastern medicine in these circumstances. It doesn't replace western medicine, but it does gives us another set of tools to examine the human experience and condition with.
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@Johnny
Eastern medicine for eldercare is to provide a trustworthy person to attend to the needs of the elderly at all times. The elderly want someone to to talk to, someone to listen to them. Usually, it is a family member. I doubt it can be done in the US? I think Rhode Island tried it in a way - adults family members taking care of the elderly were paid by the state Medicaid program hourly wages for the service they provided. Helped those who quit their jobs to care for their loved ones.
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