Long-term care is the great transfer of wealth of this generation. There are no assets left, after dementia, to pass on to your children. You children go into the first 10-20 years of their employment deep in debt. There is no way to put money aside for retirement. The cost of long-term care is out of the question for all but the top earners in this country. Heck, most of the younger people can't even afford regular insurance. Let's be honest, our healthcare system is broken.
303
My mother passed away Thanksgiving Day 2019 after a quick but brutal struggle with Lewy Body Dementia. She was not capable of taking care of herself, was aggressive towards others, had vivid hallucinations, and struggled to feed herself. Yet she/we qualified for ZERO financial support. She spent the last 4 months in a wonderful facility that supported her behavioral and medical support needs. The cost was $10,000 per month. If her disease had not progressed so fast, she would have run out of money in 1 year. It is a national tragedy we are not taking care of our most venerable, and fragile, aging population. Shame on us, America.
386
Condolences to the family of this correspondent.
The cost mentioned in the piece seems close to an average—I think it might be closer to $12,000/month, however. Elders at risk, and their families, need to be very clear how such costs might be managed, if even possible, for at least 2 to 3 years.
34
I believe we need to call dementia "brain failure" and make it clear to patients and their families that it is a progressive and fatal disease. That might help all of us get used to the idea that dementia ends with death.
I would also urge all readers to TELL YOUR FAMILY your wishes about your life's end BEFORE you are demented and unable to talk about it. If you don't want life saving measures, specify what those are. Most of us agree that a ventilator is life saving, but so are antibiotics, flu shots and IV fluids.
My physician father was losing his (considerably enormous) intellect last year, and told us all that he would no longer be visiting doctors, dentists, and hospitals. He would like to die at home, preferably before he forgot who we all were. 9 months later he couldn't remember his grandchildren's names, and 5 weeks after that, he quit eating and died, in his own bed, with his wife and 5 children at his side. He was under the care of a home hospice and we could support his wishes because he had made them so clear.
If you haven't read Atul Gawande's book Being Mortal, please do. It will help clarify what we talk about when we talk about our elderly loved ones and how we get old in America.
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@Denver Doctor
Yes, Being Mortal is an excellent book. As I recall, he reserved judgment on medical aid in dying, which is a critical issue we must pay more attention to. The book is a must-read for all adults over 60 as well as their offspring and other loved one. Thank you for posting this, Denver doctor.
54
@Denver Doctor
Gawande's book was very helpful in helping our family define our end-of-life philosophy. I've given this book away several times including to clinicians. Another book I found helpful was _Loving and Leaving the Good Life_ by Helen Nearing. Key for me was understanding death not as pathology, but as natural process.
My mother (now 93) with advancing dementia and osteoporsis fractured her hip almost a year ago and underwent surgery. After her rehabilitation we moved my parents into assisted living. Four weeks ago she fractured her other hip. This time her rehabilitation began in a small rural hospital where they discovered she had third degree heart blockage. To DNR (do not rescusitate) and DNI (do not intubate) we added comfort measures to her advanced directive and made it clear to staff that we would refuse most interventions (e.g. a pacemaker to correct the third degree heart blockage). Just this week we moved our parents into the Benedictine Health System which has a skilled nursing facility and an assisted living wing so that my parents can spend their final days together. They are fortunate to have long-term insurance and that my mother's dementia has not presented as described by the author. She is pleasantly confused.
The journey for each person and their circle of care givers is their own. For myself, I have begun exploring the Right-to-Die alternatives and have begun to discuss this with our children.
55
@Denver Doctor - Gawande's book is excellent, as you say, in providing clarity to end of life. My mom is showing signs of dementia and just last week, finally met with her family doc to be referred to a geriatrician for further assessment.
I have told my siblings to read this book. It's key to grasping how the future looks.
30
These tragic personal stories are part of a larger demographic time bomb -- the aging of the Baby Boomers -- that we've seen coming for decades and to this day have done nothing to plan for. Kind of like the climate crisis, about which many people are still in denial. Now we have to scramble in a panic. At least I hope someone in authority is scrambling! Families such as those of the writer need policy help and there are so many like her who are in dire need.
149
Right behind the Boomers, Gen X. Then the Y’ers followed quickly by the millennials. Am I seeing those cohorts working to address the problem for their own generations? (No, I am not.). So let’s not blame the generations. Let’s place the responsibility firmly where it belongs: with criminal insurance companies, their executives, bought off politicians and government clerks who are paid good salaries and incredible benefits to be able to tell the rest of us “No!”
149
@Gregory Instead of waiting for the govt to plan, "we" have to plan for ourselves. Individually. The gov't has never been generous to the elderly.
24
Individually?
Did you home school your children? Are you a volunteer firefighter? Are your local police contractors? Is our country defended by a military supported by GoFundMe?
When we need services to address a common, public need, like schools, fire departments, an army and police, we don’t opt for “individual” solutions. We don’t go it alone. We don’t sit back complacently while the well-off pay for what they want and the rest of us go hang.
No, we come together as a community of compassionate and intelligent people, and work towards solutions. We tax ourselves to pay for services that benefit all of us.
We should be doing this for elder care and dementia care, which is not just an individual personal problem. Families are bankrupted. Highly productive workers have to shorten their hours or quit their jobs to care for elders. This is not good for our society.
Don’t let the needs of the one outweigh the needs of the many.
75
The 'problem' is dementia is profitable: a billion dollar industry that's smacking its chops over the coming feeding frenzy as the baby boomers slide to death.
A recent Royal Commission into Ageing in Australia found that 16,000 people died before they could be admitted to an aged care facility.
Think of the millions & billions the Industry lost! Can't have that!
It needs to be remembered:
1. Lives are never 'saved': they are merely extended.
2. No-one with any form of dementia, a terminal illness, has just one terminal health condition.
3. There needs to be a recognized point where a dementia patient is moved to palliative care & all medication, except for pain control, is stopped.
4. Nature will take its course.
It's not going to happen any country, like Australia, where every atom of human activity has been 'monetized' & sold off to multinational corporations.
Or by anything considering itself to be a rational government that can demand doctors perform a non-existent medical procedure to extend a non-viable life. (That's Ohio, in case you missed the 'morons of the week' news)
27
I am so sorry that you are in this situation. Here in MA, one can still choose the traditional fee-for-service Medicaid though it is clear the State is gearing up to phase out traditional fee-for-service Medicaid. Once that happens, MA seniors will also be finding themselves "ineligible" for the very same nursing home services that today they are eligible for.
If you haven't already done so, please check with your local Area Office on Aging? Many States have State programs that help families care for seniors like your father. In MA, the State's Community Choices Program, provides up to 24/7 in-home care for seniors who are on Medicaid.
My husband and I are firm in our commitment to help the other die should either one of us develop dementia. The "easiest" way is to help someone stop eating and drinking. So many seniors chose to die this way. I don't pretend it is actually easy but, it is possible and my husband and I would definitely give it our best shot should we need to.
Finally, there is a wonderful caregiver's notebook that helps caregivers make sense of caregiving process. It can be found for free at https://springwell.com/resource/caregiver-notebook/
10
Hired a caregiver for my mother so I could keep my job, tho' it cost my than my income. Tried day care: one center did not want my mother, another dropped her at my office after 30 minutes because she cried. Amateur caregivers and my sister could not handle her; we could not afford a nursing home. I did a lot of the work, because I knew that the caregiver would be underpaid and was raising a child. So I showered my mother, changed diapers, brushed her teeth, did her laundry, etc. Nights and weekends were hell. 2 AM meltdowns every night. Ma was restless and would even drag me into traffic; it took all my energy to keep her out of trouble. Drugs made her worse. Doctors, lawyer, AARP, Alzheimer's Assn, state of NJ were useless. After she died, NJ and the IRS took about $155,000 (I'm not rich, my income after taxes is $35,000 tops). For that, I got a teardown house, not enough dividends to pay the property taxes, and $200,000, which is being used to repair it. I'm better off than most people, but chronically ill; basically my life is over. I was run down a few months ago, and the spectre of impending dementia makes me sorry that I survived that accident. It would have been such an easy way out.
25
Please, God, let me die before I come to that.
26
This is the face of medical apartheid in this country.
And it sickens me.
13
No amount of planning will do a perfect job of protecting us if we slip into dementia. But there are steps that can be taken. There is paperwork that can be done re: advanced directives that take into account dementia. Check out Compassionandchoices.org site for more information: https://compassionandchoices.org/end-of-life-planning/plan/dementia-provision/
8
My mother, in her early 80s, developed organic brain syndrome, a hardening of the arteries which causes dementia. She slowly deteriorated over 10 years and, as the only child who could care for her, it was pure hell for me. She was often angry, uncooperative, in denial and combative. I ended up getting a tranquilizer from my doctor so I could sleep at night. Family members who were ignorant about how the disease affects the demented one's personality often made critical remarks about her behavior or what I was doing about her care. To this day I will have nothing to do with them. People you have no right to judge until you have walked in another's shoes. Please be kind and supportive to the caretakers who are trying to manage an impossible situation to the best of their ability and are under tremendous stress. If you think you can do so much better than why don't you offer to step in and help? No, so much easier to sit on the sidelines and critique something about which you know NOTHING!
126
I had no idea of the costs:physical, financial, emotional, etc., of Alzheimer's, until we were faced with it, when my mom was diagnosed with it. I even wrote a book about our travails:"My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." There are so many of us in the same s(t)inking boat. I always thought Alzheimer's only had to do with memory. I thought,"If my mom doesn't remember me, I'll just remind her who I am." As the author of this piece points out, there are so many facets to Alzheimer's, and so many hoops to jump through, so much red tape here and there. Let's just hope that a cure is, if not around the corner, at least in sight.
42
Here in Oregon we get to choose our code status, and our families get to overrule us. I believe it is important that everyone has an adult talk with their doctor when they reach the age of 60, and the families should”butt out.” It should be on the ballot, like “death with dignity.”
8
Dern this stuff is terrifying if you are late 60's as I am. I can hope that with my high blood pressure a heart attack or stroke will get me first.
And if neither of those gets me in time, I'll take a one-way swim in the ocean rather than put myself and my family through years of slobbering idiocy and lack of bowel control.
18
I’ve vehemently been against Elizabeth Warrens wealth tax but this puts a chink in my armor. This should not be happening in a country as wealthy as ours... and we should be talking about costs. As the article and comments illustrate, even when covered by Medicare or Medicaid, they still manage to ding families with “extra” fees and costs.
If we are to drain the wealth at the top, which will happen under Warren, let’s at least create a system that also controls the profit and prices of pharmaceutical, care home, and medical procedures.
I find that I often end up paying a fee for a medical service on top of insurance. Often, these fees feel a lot like what the service should cost in a free market. One quick example: using my insurance I went to get an eye exam only to be told I owed an additional $180 for a “contact lens fitting fee”. What a joke… In what universe does contact lens “fitting”, which took two minutes, equate to an almost $200 fee. Isn’t that the whole purpose of the eye exam and if not then shouldn’t insurance be covering it? What are they going to charge me for next… Sitting on the chair? Going to the bathroom? Breathing their air?
If we don’t tackle the price inflation, then our insurance and or home health care benefits will never cover our needs. Not only will the insurance companies continue to pay exorbitant and unreasonable costs, but the providers will continue to invent whatever bull fee they can imagine.
18
I am so sorry for your loss, and your Fathers. This is my worst nightmare, personally. I will not go gently into that fog of living death. I have plans, if it becomes necessary. No one should be forced to “live “ this Hell, and their Families made to suffer, relentlessly.
11
Vote for a Democrat. Your only hope. Even that may not be enough.
45
I am endlessly disgusted by the health insurance industry, for that is what it is - an industry. Their purpose is to make money regardless of the needs of the individual. The system is endlessly complicated and I cannot imagine how those of us without a PhD manage to figure it out with all the fine print and all the little exclusions. It is exhausting and even embarrassing.
Most of all, however, it is outrageous. We pay for our insurance and get very little in return. A trip to an urgent care out of state? Not covered. It was “only” $300, but there are many who cannot afford that price. Are we to never stray across state lines for fear of an illness that is not covered?
And then there is their tidy little habit of not covering things that are covered in the hope that you are too stupid to realize it. My son had his appendix out and we received tens of thousands of dollars in bills. It was all covered, but the insurance company was trying to pull a fast one. Several phone calls later, they admitted their “mistake” and everything was covered. What about the people too intimidated to call their insurance company?
Insurance companies are scammers, criminals, and schemers. They are not providing a service. They are stealing our money.
60
My husband and I don't expect our children, who are geographically dispersed, to step forward to manage our care or to care for us. When things gets to this point (dementia, Alzheimer's, falls, lack of quality of life), the healthcare system costs will be far beyond our reach.
We plan to quietly take our own lives.
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@A very concerned voter This is my concern too. We need to understand the legal options and how to implement our wishes. I too refuse... but I'm just not sure I'll be allowed to.
18
@Recovering Catholic I have known numerous people who died through euthanasia in my congregation, but they were all suffering from terminal physical diseases. Alzheimer is nearly impossible to get permission for, as by definition the patients in question cannot express their will. Even when put on paper in a life’s end codicil, physicians are very reluctant. It is a problem that is hard to solve. You can only hope for a compassionate flue to come along at that stage.
13
@Mary It's not a matter of asking permission from the authorities. It's about seizing control over your own destiny.
22
I took care of my husband who had Alzheimer's and dementia for 14 years by myself. Until his death. His issues related to Alzheimer's were terrible and exhausting enough but the fact that there are people such as lawyers and priests who exist who have no trouble stripping you financially dry is unbelievable. My parish pastor had no trouble taking and keeping my $1,600. Didn't he know or care that Alzheimer's impoverishes you? Even after I reported him to the Archbishop he never returned my money.
A lawyer charged me thousands of dollars when I had to go to court to fight to keep my husband in my care. He even charged me hundreds of dollars for attending my husband's funeral viewing on his own.
The police treated me with disrespect because my husband began to roam as if it was my fault. 60% of persons with Alzheimer's will roam. Roaming is part of the illness.
There are many ways to help by installing simple locks on fence gates too complicated for a person with Alzheimer's to figure out. There are installable loud buzzers on doors that open to the outside to alert the caretaker.
It helps to help the patient's roaming concerns by using your imagination and assuring them that the person they are searching , dead or alive, is safe and happy.
45
Alzheimer's is a disease that is so much harder on the caregiver. For 10 years we struggled to stay one step ahead of it as my father's condition deteriorated and my mom's ability to care for him was taxed. My sisters and I contributed time and money to help care for my dad, care for the house, care for my mom, and keep them both safe.
The best phone call I ever made was to our local 'Office for the Aging', the most important conversation I had was with an elder care lawyer, the organization that does not receive enough recognition is 'Meals on Wheels', and I will forever be grateful to the many unsung heroes in their community who were an extra set of eyes when I needed it most.
Good Luck to everyone caring for a loved one with this horrible disease. You are not alone.
46
I was lucky with a parent with dementia. My mother had a rapidly progressive dementia, the first signs of which I--a neurologist--missed, because she was my mother, my oh my God, she is my abulic mother now, who once instilled the love of books and curiosity into me and who could do the NYT crossword puzzles in ink,
My mother refused to eat, and rather than put a feeding tube in, we only offered food and drink. She did not take enough to maintain her, so we moved her to hospice, rather than a nursing home (which she had once made me promise never to do), and died five days later, my father and I at her bedside.
Patients have the right to refuse food and drink. which is now called VSED (Voluntary Stopping of Eating and Drinking.). It is not suicide, euthanasia, or any other charged term. It is a natural death, which along with pneumonia is how people used to die, when I began my training half a century ago. People are not attached to machines, have tubes in their stomachs, getting antibiotics they didn't want, "therapy" that isn't going to bring them back.
The best thing I ever did as a neurologist was to know when it was time to let people die and make it as comfortable and dignified as possible. That we can do right now in America. It's humane, dignified, and right.
143
We could do this; if we would put people first in this country.
21
I don’t mind my taxes helping with medical costs for those who need it, but I will not vote for my taxes to be tripled to support someone whose brain no longer functions, who doesn’t know his own name or the names of his family members, who doesn’t even know he is alive and I don’t expect my fellow citizens to do so either. Euthanasia must be made legal in the US.
40
Is there anyone out there who has a positive story about insurance companies? Think of the vast resources that would open up if your health care system was rid of them forever. You must summon the will to do this, for the sake of all the victims of this dreadful affliction, and millions more.
40
With a parent suffering through Alzheimers I can only wish that we were a truly civilized nation like the Netherlands. A polity where one could sign a document and have it all be over, neatly and with no more suffering. Alzheimers is a death sentence and a slow torture to its victims and their families. We need to permit the euthanasia of these incurable people and stop this additional madness of "care" that only makes the nursing home racketeers richer.
54
In Washington State we are, in theory, protected by a “Death with Dignity” law. However, several of our hospitals and other medical facilities are owned or administered by the Catholic Church, aka CHI. In the event, there may be problems for an individual with a Living Will and other documents to exert his or her wishes, even with the intervention of family members, their doctors and lawyers. So even with the law on their side, hospital policy may result in patients facing years of existing in a coma or a demented state on feeding tubes.
21
We are all cowards.
There needs to be a way to end life for those who want it to end. Those who want another's life to end because of things described in this story will not step forward to admit it. Therefore the solution is to dictate conditions that require a person be be terminated that we can all agree on that relieve insurance companies of the financial burden while relieving families of the need to be imprisoned or decide something undecidable. Death is part of life and we need to embrace that there comes a time when postponing natures methods by human intervention is stupid. It is not simple but it can be ethical when the future afflicted agree before they get to that point, to sign off on the conditions of their termination. But we have to allow it as a society first.
21
And yet the Very Serious People tell us that Medicare for All is “too radical” (thanks a bunch, President Obama). Our country should be ashamed.
18
Having a parent with dementia is no big deal......as long as you have lots of money to spend on that.
If you don't have lots of money....get prepared to struggle.
I know this from personal experience.
Or am I missing something here?
24
I suggest that those who wish to have choices about quality of life with Alzheimer's or other dementias let your loved ones know what are your values and preferences. Here is a link to one guide to that discussion, which can be added to your health care proxy and advance directive: https://compassionandchoices.org/resource/dementia-provision/
11
There is only one way to stop this horror. Vote the Republican Party out of existence. Until the we will continue to live in Darwinist dystopia
26
In these cases, I believe that suicide is an act of live for one’s family. Is a quicker, more dignified death really that scary?
12
It is terrible to see your parent so impaired.
Perhaps you have done this, but , if not, you might hire some outside help to come in a few hours a day, several times a week? Your mom could have some respite. With several siblings to share the costs, I hope something will work out.
8
Everyone deserves to say, in advance, how and when they want to die when disease strikes.
11
I wish your father all the best
2
This is why I stopped having anything to do with my parents. Who needs that nonsense in their life?
1
I have read most of the comments below...
I truly believe it is a shame AND a disgrace that all of us, be that seniors "to be" or current normal people who will become old but prone to Alzheimers and other very serious old age ailments, that in this nation, don't have something similar to Germany's ways and laws regarding this tragic life happening and what other countries have in what relates to a kind, human and realistic approach to these situations which may affect or will affect a good number of us...
We are not planning our health care system wisely and the system is keenly dismissing the next few years that ALL OF US will have to face...
Us Seniors, Seniors of this country, those of us that don't have a family foundation or trust to back us or you up, or due to millions accumulated from graft and gifts from special interests by our representatives or senators, have been left in the hands of politicians of every colour, interest, bribe taking, lobbying and, of course and predictable, Republican and Democratic affiliation...
I urge you to get involved in the issue, no matter what your political inclinations are for this is a subject we can't put aside conveniently and, unfortunately, will affect everyone...
This is from another 83 years old brave sister writing on behalf of that possible future my four daughters will maybe have to face in the coming years... I love you all... Let's do something sisters...!!! And move...!!!
12
This is why you need to vote for Bernie Sanders.
10
I notice that most if these comments describe folks in the 80s and beyond, and many demand unending care at public expense.
I am all for public expense, but folks, what you’re demanding is insane. We simply haven’t the money, and what’s more haven’t the resources for this stuff. Especially we don’t, for those of you who want a Big Wall at the southern border. No, taxing the rich and abolishing the Pentagon won’t pay this tab.
I worked in hospitals for more than one decade (guess what happens when you do chest compressions properly on an eighty-year-old?), and I am genuinely sorry, but we all of us ought to face up to the fact that people die when they get old. What’re you hanging onto...people with profound dementias and Alzheimers, and multiple disastrous ohysical conditions?
I am far from young, so far pretty healthy, and fortunate enough to have been able to buy wicked good LTC insurance. And I hope to have the guts, when the time comes, to shuffle off to Buffalo with as much dignity as possible, without chewing up money and resources that woukd be one heckuva lot better slent making sure that fifteen or thirty kids in, say, Flint, Michigan had clean water, no lead paint in their homes, their shots, a pair of glasses, a dental checkup or three, and decent pre-school.
Briefly put, all hail Terry Pratchett.
14
The New York Times doesn't print solutions, just problems. What a pity.
There are steps to take to prolong productive life, but they see no sunlight here - perpetuating the indignities of Alzheimers.
4
Shame on our country. Shame shame shame. We are just pitiful - terrified of "socialism" and healthcare for all.
9
My mom, her brother and her Uncle all died from Alzheimer’s; now my 67 year old brother has it. For my mom, the path from diagnosis, to day care to nursing home admission was wrought with sadness, brutally difficult and hard decisions. However, my father, his 5 sons and our wives made it work as best we could.
Completely different story with my brother. He’s divorced, has no savings, he moved from one “friend’s” home to another until he was homeless. We, my brothers and our wives have bobbed and weaved from 1 emergency to another for 6 months until we got him into senior housing. Just last week he walked into the police station to report his car was stolen - he was holding his car keys and his car was parked in the police station lot. We’re scrambling now to get MASS Health because he’s no longer capable of living in the community i.e. we need to find him a bed in a nursing home.
For any one of the millions of us who have to deal with this soul sucking, despicable disease, there’s nothing new here. We been through Aricept’s fool’s gold promise of slowing the disease. We know that there’s no cure in the pipeline of drug trials. What we really need is a large scale government initiative to address this age related tsunami that’s going to overwhelm our healthcare system. Sorry to say but I’ve got zero hope that anything of this kind will happen under this administration.
17
Not "unending". It ends.
3
My current plan is to avoid all heart medications and hope for death by heart attack, before dementia sets in.
17
A search on what is known about Alzheimer's shows some very interesting facts. One is that a ngram search on the word Alzheimer's shown that little was mentioned until 1970 after which its use vastly increased. Another is that it affects more women than men. All this suggests that it is the chemicals in our environment that cause Alzheimer's
Also the questionable practice of using Surfactants as a food additive when it is recognized that these same chemicals allow medications to bypass the blood brain barrier suggests that maybe it is the degradation of the blood brain barrier that leads to Alzheimer's.
Maybe what we relly need is a chemical free diet.
32
I took issue with the topic of this story. Why aren’t you propagating good stories?. My wife has has been diagnosed with AD, and is in our sixth year. She helps with the cooking, has learned to set her shower, she makes the bed etc.. It’s important to remember that AD is a small part of that person we loved, focus on all that’s left rather than what is missing.
Endeavour to have a happy environment, and be attentive to every change in the wrong direction, and immediately begin to counteract it’s onslaught.
My wife likes to pick things up off the floor, once it became repetitive I acted to remind her to use a broom. It’s the little things which should be encouraging, look for those things, because AD affects the caregiver as much as the patient.
Some behaviour are difficult to change, and therefore require an understanding of its origin.
Remember every day can offer a different person to the one we’re used to.
All in all, AD is but a challenge, a formidable one, but where there’s a will, there’s a way. Seek ways to remember tgat it’s just a small part of the person we love that’s compromised, we do best by helping to lessen the importance of the changes.
When things are leaning towards a difficult period, play some music that the person relates to, it makes a huge difference.
I wish my wife’s results on everyone afflicted by this disease.
32
I am going through some of this with my mother, and recall my parents going through it with my grandmother. My sister's 60-year old brother in law died from frontotemporal dementia, the symptoms of which I thought of as you described your much-older father.
No answers, though. This is brutal. Love always.
53
Alzheimer’s is not part of the "program" that we all live by while un-afflicted - to add it [ and all disabling disabilities ] to the "program" would amount to acceptance of the inevitability of decline and the supremacy of entropy - who wants it?
4
My heart goes out to the author and her family. Alzheimer’s or any similar form of dementia is a disorder that has a debilitating affects not only the patient, but those on whom the patient must rely for support. It’s the stone-in-the-pond situation where the ripples expand outward touching more and more people. The author writes of nine family members that form the support group, but what of smaller families? In survey done years ago, the physical health of newly diagnosed dementia patients and the primary caregiver were tracked until the patient died. Not surprisingly, they found significant deterioration of the caregiver’s physical well-being. With an aging population, the country is facing yet another medical disaster and yet there is little evidence of interest in fixing our health care system. I look forward to the time when our government is as interested in the health of our citizens as they are in the financial well being of those in the health insurance and pharmaceutical industries who profit from our misery.
119
Forward this article and it's comments to your legislators, particularly if he or she is a republican, or, God forbid a trumpist.
Don't you people know, under their philosophies you are suppose to "buck up", where's you sense of "individual responsibility "; or, there is the implied republican mantra: You should have become a millionaire.
Also, don't consider long-term care insurance any magic answer... very expensive and full of exceptions, loopholes, expenses-not-covered; it's an insurance company, the bottom line is their goal.
We must move towards a medicare/caid for all system, probably in an incremental fashion. Support candidates and current office holders at all levels who prioritize nurturing a more responsive and caring society. Slam the door on current GOP
obfuscation, dodging, and false-values... and Don the Con.
158
The stories are poignant and heart wrenching, but all too familiar to a geriatrician like myself. It is my business to tell the difference between the merely sick and the terminally ill and Alzheimer’s disease is relentless and terminal process. My professional advice is simple, if you want your loved one to cease their suffering, then stop ALL the medicines! Drugs to prolong the function of the heart and the thyroid and lungs are worthless in the face of Alzheimer’s, and serve only to prolong the misery. Stiffen your spine, and let your parent pass away from natural causes with whatever shred of dignity they have left.
707
I can’t say I know much about Alzheimer’s specifically, but I do know about taking care of sick and elderly family, and that on its own is hard enough. And what if you couldn’t pay for any of that badly needed medical care? This is why we badly need medicare for all, and not in some weird doing-it-in-a-few-years way, but as fast as humanly possible.
61
Oh, my dear.
I just stepped outside my apt to weep in the dark for my mother, for my sister, for all my losses, for all OUR losses past and yet to come.
You are a good writer.
May God bless you and give you strength. Your father is loved.
He knows it. What greater gift is there?
78
For the life of me, I cannot understand why anyone embraces Republican doctrine, the face of which was perfectly portrayed by Mick Mulvaney beaming and proudly proclaiming that the most compassionate thing Trump's budget did was to cut Meals on Wheels. That's all you need to know.
406
The proper word is dementia. AD can’t be diagnosed in vivo although it really doesn’t matter since there’s no treatment.
36
His dramatic mood behavioral changes seem more consistent with frontotemporal dementia, than Alzheimer’s dementia. But regardless, it seems like he would benefit from a medication such as Depakote, which is good for behavior and mood stabilization in a variety of conditions. It might help your family manage him at home.
21
I am so sorry for anyone who is struggling with this issue. None of us should have to..Your father did nothing to cause this situation. None of his family did anything to cause this. My mother suffered with Progressive Supra Nuclear Palsy and all of its attendant issues. We fought the good fight to get her the care that she needed....We were turned down at every corner...My father, my siblings and I, cousins and aunts carried her through.... She died almost 20 years ago. That families are still being forced, via lack of understanding, or refusal to understand by the folks who make decisions (WHO are these people anyway???) about who is sick enough, who requires a higher level of care, is astounding to me. OH, I have theories; that lawmakers are never forced to make these sacrifices. Having more money than most of us, they are never in the front lines on these issues...Do they even know how many families are under the thumb of aging parents who are extremely ill, and who cannot be identified as such?
43
My wife and I have been in this situation with all four parents, each Alzheimer’s and all different. We have one parent left. The disease is now ravaging its way through their siblings.
No two cases are the same. Every article read, every expert advice received, every treatment and medication resulted in frustration. Exercise is key. Doesn’t matter. Keep the mind stimulated- check. Eat healthy. Been there, done that. On and on.
Costs for assisted living, dementia units and nursing homes are outrageous. State standards vary widely as do provider to patient ratios. $8000 a month. That is a bargain. Costs are not less outside NY/NJ. We moved to the mid-Atlantic and pay the same if not more.
Facilities are usually not for profit and don’t break even caring for dementia patients. The money is in Assisted Living. Secure dementia units are becoming scarcer with residents moved directly from assisted living to nursing homes.
The true bright lights are the highly dedicated and woefully underpaid nurses and care managers. They are amazing, caring angels.
Solutions? Medicare for All is not it. The cost to house and provide safe, secure care is prohibitive. Most long term health plans are a scam. Coverage is inadequate and premiums increase exponentially as you age. Many drop out as they need the insurance. We don’t care for the elderly well in the US.
Family history shows my wife and my destiny. We don’t know what to do but this is not how we want our lives to end.
59
@ArtM:
Quote: "Solutions? Medicare for All is not it. The cost to house and provide safe, secure care is prohibitive."
Really? It works in Europe.
81
@ArtM
As my wife and her siblings continue to care for their 95 year old Mother as you well know about, they also dealt with the $8,000 "solution" at the same time for her 90 yr old sister. After an abusive placement, resulting hospital treatment and forced into another such placement, even in KY where state mandates are unlike NJ, many of these assisted living facilities are owned by the same corporations. Wife's aunt was essentially paying $8,000 monthly to hope she'd get a drink of water and a meal per the doctors orders. Thanks to God for allowing her to die as soon as she did!
7
@ArtM Medicare for all is the ONLY solution. How could you think otherwise?
5
I lost my beloved uncle male mentor role model to the evil malign inhumanity of Alzheimer's.
What I 'learned' from that experience was that who we are is amalgam of experiences and memories accumulated over time.
As those fade into the ether then you are not you. Despite your physical appearance remaining the same.
And the comfort that we all can't remember and recall everything goes away. Watching my uncle slowly disappear was one of the most horrific experiences of my life.
If you can't remember that you hate plaid, grape jelly, white bread and the color brown then you are not you. When you can't recall what you just did and said then you have reached the end of you.
And when you can't comfortably determine how much of the person you knew remains you are beyond exasperation and frustration.
Humble humane empathy is the human virtue. Not pity.
56
@Blackmamba
My uncle ended up in 'nursing home' in a strait jacket strapped to a hospital bed hooked up to multiple monitors and feeders and fluid fillers.
And still he 'managed' to fracture his hip. Leading to a lawsuit and a financial settlement.
How much 'pain' did he feel still haunts me. Mercifully he didn't last that long. And I couldn't stand to see him suffer.
My last memory was of me rubbing his head and telling him that I loved him followed by a brief 'smile' from who and where I will never know.
51
@Blackmamba
I love your comment, and at the same time, I am not sure I agree that if you can't remember what your likes and dislikes are, you are not you. To give an example, my Texan grandmother forgot she was a racist when she had dementia, and for the last years of her life was taken care of by people of color and loved them, and they loved her, came to her funeral and called her an angel. I have always felt that her true self was revealed by forgetting all those ideas and likes and dislikes.
17
Maybe, just maybe, Americans will wake up, and vote for a president and party that will rein in the greedy insurance companies who are the villains of the piece mentioned in most of the comments here. America’s health cost issues and the misery of its citizens can all be traced to a handful of companies and their richly compensated executives who, lets be clear, pay off Republicans with rich bribes so they stymie any and all attempts to redress the venality extant in America.
86
Unfortunately, the current US healthcare system is configured to deplete the wealth from those affected by Alzheimer’s and destroy family relationships along the way.
72
In a government supported health insurance programs, the incentive is for efficiency and effectiveness of service. Keeping serious accident or emergency consequences at bay is a social and public health priority, (as well as less expensive.) A number of visiting nurse hours at least might be covered, and nursing home care at least partially.
But because of the privately contracted insurance provision here, withholding of service is incentivized, because greed and profit can be maximized.
Keep appealing. Get beyond that care coordinator gatekeeper. Write letters. Get your local politicians to advocate. These insurers only get away with what they are allowed to, and their government contracts are at risk of being gobbled by others. It may not be enough, but you have the power of complaint. We should all complain. Your beloved Dad is a danger to himself and others. He is putting his own and your mothers health at risk. He shouldn’t have to be found outdoors in pajamas in a pool of urine before insurance provides some help.
God bless you, and good luck, and here’s to a more sane and humane policy for public health insurance sooner rather than later. We are all your family, or in even worse circumstances. Enough!
145
Of course I heard yesterday that Trump and the GOP want to roll back new regulations on nursing homes. $600 million a year saved (for them) and that money will be used to help the patients....a big HA!
Additionally, they want to relax restrictions on certain drugs so that a doctor can keep prescribing without seeing the patient. Maybe that is our silver lining- we will be able to get the drugs to kill ourselves. I am serious and demoralized daily.
My Mom was in assisted living at $15,000/month for two years. Out of pocket. Lucky to afford it but my Mom would have been horrified to know we were paying that.
Oh but Trump is going to make healthcare better,cheaper and available to ALL. Please vote 2020 and get these nasty GOP members out.
88
I took care of my sweetheart for 3 years beginning with MCI progressing to AZ. It is the cruelest of disease. Picture a giant pair of hands around your neck, slowly squeezing until you die of strangulation. Also, I've not read any comments about the social isolation experience. One by one you lose acquaintances, then your friends. You're excluded from activities and social events. No one wants to be around you, and that includes family members. You're pretty much on your own. Add to that the guilt you feel if and when and you WILL lose patience. It's a horrific situation.
271
One thing--people with Alzheimer's should not be on any medicine intended to prolong life. It just isn't fair to keep them here longer than their expiration date. My 86 year old aunt had Alzheimer's and the doctors had her on three heart medicines--she was extremely wealthy-- until I took over. The first thing I did was stop her medication. The doctor was so grateful to take this measure, my uncle had prevented it. She died peacefully in her sleep three weeks later. There is evidence, too, that advanced Alzheimer's patients are in considerable pain.
91
@JJ Flowers: I'm dealing with pretty advanced AZ and dementia with my mother in law and what you say makes sense. But is this medically ethical? Will withholding heart meds be supported as an acceptable way to proceed?
14
@JJ Flowers A cousin of my mother told me that her mother-in-law was so far gone that if you put a nice flower plant in front of her she would eat it! She and her husband exploded when they got a note from the nursing home cheerfully telling them: "It is time for you loved one's yearly flue shot". They immediately put a stop to that. Flue is a mercy in such a situation.
43
@teacher The concept of palliative and comfort care includes using medication meant only for comfort and not to prolong life. Yes, ethically these medications for heart, blood pressure, and cholesterol and other supportive treatment can be stopped as they are not contributing to quality of life. Likely, they are causing unknown and unvoiced side effects.
68
I'm going to die. You -- yes YOU -- are going to die. It's just a matter of Time. 10,000-year-old trees are going to die. The eternal verities apply.
I want to be in touch with my fellows on Death Row. I'm an ephemeral element. I want to go out proudly and humbly. What do a few more useless years matter? If only that could be a part of our philosophy of Life, along with the sanctity of property and the GNP. As I understand it, our health care crisis would be eliminated if we didn't spend so much keeping old people alive one last year. I'm 78 1/2 and ready to go any time, and I will not tolerate anyone stopping me.
66
Alzheimer's never makes sense. My grandfather has it. I'm named after the woman he was married to for 51 years (my grandmother). Yet he can't remember my name. You'd think as a healthy person that you'll remember the grandkid named after your spouse. But the Alzheimer's brain just doesn't make that kind of sense.
17
Your father needs to be in memory care, not assisted living. If he's a wanderer, no assisted living facility will accept him. If your family has any money, they need to put your father in memory care. Otherwise, your mother may die before your father. 65% of caregivers die before the patient.
39
I believe there are US families that have dumped their old and incompetent relatives in the UK for the NHS to care for them. It is a sad indictment on the appalling system of aged care that the US is supporting. I just don’t understand how the voters don’t rise up. Until then do you can expect more of the same.
18
@LOLS I don't understand why the voters don't rise up, either. Here, 90% of Republicans are united behind Trump, and most of the rest will vote for him anyway. They don't realize in the next four years of Trump/Pence--at the moment likely--the ACA will disappear, and there will be a lot more people in the streets--living and dying there, not protesting.
36
This right here: "even on the worst days, when she has to lock herself in the bathroom to escape his mood swings"
Something ought to be possible here. Can a report be made with the police, that she is not safe in her home? It might feel like a betrayal but that might be what it takes.
We cared for a disabled friend in our home until due to my husband's cancer treatment and my back reaching the end, we couldn't anymore. It took a neighbor calling the elder abuse hotline to get the county involved and get him moved into a care facility. We wanted to continue to care for him but it became impossible and that is what it took. (The county investigator and the cop who did the wellness check were very kind.) Do we have a crazy "system"? Yes, we do.
42
I am currently 68 and in good health for now. Dementia runs in my family and each time I forget a name or cannot conjure up a word, I wonder if it is starting. I am frightened for my future and the collective future of my generation. What will happen if and when we need skilled nursing care? Will it be available? Will it be affordable? Will some faceless insurance bureaucrat dictate our care? We should not have to worry about this as we approach the end of our lives.
49
My husband died in February of 2019 from stage 4 lung cancer. It was a blessing, because he had been living - I should say, we had been living with vascular dementia for several years. I was his caretaker, and there were days when I felt that I couldn't go on - I didn't have enough love in me to do this job. And then came the other diagnosis. He died a few months later, with hospice care in our home and his family with him. He had no pain, amazingly. It was a peaceful death and a good life lived. He escaped the utter desecration of self that is dementia. Yes, it was a blessing.
84
@MARY: My deepest condolences on your loss, and my sincerest hope that you feel absolutely no guilt, not a trace, at the relief that accompanied that loss. Only those who have lived with a loved one with dementia can understand both the pain of the condition, and the relief - both for themselves and their loved one - that comes when the nightmare ends.
36
My husband died in February of 2019 from stage 4 lung cancer. It was a blessing, because he had been living - I should say, we had been living with vascular dementia for several years. I was his caretaker, and there were days when I felt that I couldn't go on - I didn't have enough love in me to do this job. And then came the other diagnosis. He died a few months later, with hospice care in our home and his family with him. He had no pain, amazingly. It was a peaceful death and a good life lived. He escaped the utter desecration of self that is dementia. Yes, it was a blessing.
4
It is regrettable Ms Interlandi and family is faced with this problem, but it was the responsibility of the "loving father" to have made the arrangements to overcome the failure of the self to recognize its decline; and for her to recognize this, not complain about the government or insurance companies.
Do you think the man who loved his children wanted what has happened to him? He drifted into it as each of us will unless there is documented intention and plan to "take me to Holland" at the right time. Ms Interlandi should have included: "Get with it, and provide Comment that you have done so..." I hope all those who Comment have made the documented plan and have Agents/family to carry it out.
14
@RRPalmer Good luck with that. i went through this with my father. He and my mother were college professors with good insurance. They had money put away for retirement. However, within a six month period, my mother had a stroke, and my father sank into dementia. We sold every asset, purged every account, and were "lucky" enough that the funds ran out right before my mother's death. Thankfully, their generation did not run up huge student loan debts that consumed the first 10-20 years of their working lives.
For us now, long-term care insurance is unaffordable. Period. Most of us are one job loss away from poverty, even those in the upper middle class. I can fill out advanced directives all I want, but there is no money to implement them. A plan is a wonderful dream, but without thousands of dollars a month to implement it ....
39
@RRPalmer ...but it was the responsibility of the loving father... easy to shift the blame but do we know their economic circumstances? Did they have and extra 2K to pay premiums as they aged? The point of this article is to say that our existing programs and facilities create barriers to most people scrambling to get by. My father had long term care insurance and money in the bank to pay for his $10k month assisted living expenses in the last 6 months of his life. In order to get the insurance company to pay the claim I had to spend hours upon hours on the phone with multiple agencies to track down the lies thrown around by the insurance company. It became a full time job that included verbal threats of prosecuting individual insurance employees for their role in carrying out fraud on behalf of their insurance company in order to get them to pay the contract. I've since found that this is a common tactic that deters thousands of people from ever receiving their due. Insurance companies know that there is no way family members can handle the stress of caring for a loved one AND force the company to pay a claim when faced with their scam of lies about not receiving required paperwork etc. Had I not experienced it myself, I might have agreed with your suggestion that people prepare for all contingencies. Knowing what I know now? No matter what you do, agencies won't do anything the law doesn't explicitly require them to do. Medicare must change.
35
@RRPalmer long term care insurance is a relatively new phenomenon and it, too is a luxury for those who can afford it. To suggest that someone with Alzheimer’s should have recognized their own decline is crass and ignorant of the realities of the disease.
10
Our family went through this with our mother. All of her assets that were left after my father died were slowly eaten away to pay for her care. At least she had assets. But others that don't will suffer even more. I hope that something can be done for prevention/more effective treatment and for the awful place our medical/insurance system puts people in.
One thing that might help your father is music. Sometimes it can have a positive effect especially if it is music that he may remember from some part of his life.
I wish you the best.
29
When my mother-in-law's care exceeded my father-in-law's capabilities, he arranged for her to move into a care center. In her own small flat, with her own furnishings, she received 24 hour care from staff trained specifically for dementia care. Even when she no longer knew him, he was there every day. He didnt have to go broke providing for her care because they lived in Denmark. Sadly, Americans dont see the value in paying for such health care through taxes, but they sure squawk when they discover their loved one will receive only services they can afford.
69
Dementia is so cruel..it robs of us our loved one's presence mentally, turns us into stressed out , exhausted , frustrated, angry people trying to negotiate a broken system of care. At least I had the advantage of being an RN with Hospice experience and was able to tap the VA initially to help pay for her Day Program (she was a WWII Navy WAVE). When it came time that she was not safe at home, I knew the facility I wanted her in and was able to visit after work. Because my parents were never well off, her Medicaid spin down was very quick ( she owned no property, having moved in with me years earlier at the beginning of her dementia, and had very little in savings as we had been using it to pay for her Day Program). I believe we can do much better as a society to care for our elderly...but there are no easy fixes as so many have noted.
23
The Republican “leadership” is actively eroding all affordable healthcare, has engineered an immoral tax cut for plutocrats, and does nothing about addressing the crush of needed and absent resources so heartbreakingly described in this article.
Why exactly do we pay taxes anyway (well, some of us pay....)
To care for our most vulnerable or to further line the pockets if the uber -wealthy ?
49
So how much should it cost since apparently 8000 a month is absurd? How much would someone have to pay you for you to give 24 hr care for someone else? Who is supposed to pay for this if it isn't the family? Why is it society's obligation to pay for this?
6
What exactly IS “society’s obligation” if not to take care of each other? What else is there?
59
@AK To answer that question you'd have to do some thinking as to what "society" means and what kind of society you want to live in.
5
@AK
Please write again when it's your savings, your partner, your kids facing this.
5
Watching a loved one live on and on and on, long after her mind completely gone, she was unable to dress, feed, or bathe herself and still she lived on, needed care with every need. It is simply in humane to torture her and everyone to try to care for someone who is no longer “there”. I don’t want that for myself. Give me the fentanyl Highway.
57
How many people plan to quietly end it? This will be the next big push against religious philosophy. Death with dignity.
58
Our society is in no way prepared for the tsunami of us boomers who will develop dementia...millions and millions of us. Nor are we now or in the future prepared to deal with the the financial, psychological and medical ruin it presents for family caregivers and care managers. Buckle up...and vote for the candidate whose plans for improved medical care best meets the urgent needs of dementia victims and their loved knes.
50
This is what happens when all care is driven by for profit companies. $8000/month. That’s a luxury, midtown Manhattan rental apartment. How many people can afford that? Health care is a human right. Not a profit margin.
46
About the biggest piece of luck I’ve hadin the last twenty years is that through an oddish piece of grandfathering, I was able to buy truly excellent long-term care insurance. I will hang onto it with six times the fervor that we hear about from gun nuts and their lugers.
On the other hand, there was a time when pneumonia was called, “The old people’s friend.”
I feel for this family, but the fact is, well, we spend far too much on the end of life, and have way, waytoo many kids hurt for want of cheap help.
19
My mother had Alzheimer's. My dad cared for her until he was 93, even though he couldn't walk (he used a scooter pretty adeptly). He was devoted to my mom and refused in-home help. If you've not seen or lived it, caring for Alzheimer's is a horrible burden. He was in hospital at one point and I stayed with her - it was maddening. We lived a couple hours away. I was their only child, so he was mostly on his own even though we visited once or twice a month. My dad's neighbors loved him and looked out for him, thank God. They would call me saying I had to do something. We knew that caring for my mom was killing my dad, but was also knew that putting her in a home would kill him as well. We left the decision to him, with encouragement that he had already done more than was reasonable. Finally, one April he'd reached his limit. We put her in a nursing home with an excellent Alz unit with a wonderful and caring director (all paid by mediCal). I semi-joked that my dad would be dead before xmas. He died on a Dec 17, just 8 months later - I'm sure of a broken heart and loneliness. A few months later the wonderful Alz unit director left the home and the unit's level of performance and care declined fast after that. My mother fell and broke her hip. After a partial replacement and seeming recovery, she died - a little more than 12 month after my dad passed. I miss them both, but their passing was a blessing as I know they are together again in a much better place.
33
My sister has dementia...diagnosed in her mid-60's. My mother-in-law and sister-in-law have dementia. If and when I develop the early symptoms, I will not stay around to see where it leads. I will take myself out. I am not at all depressed but I will not live with dementia and what it will do to my family. It is the only answer to this disease due to the current state of care for those who have it. It destroys the family.
135
@jcs
Good luck and best wishes !
21
Please share if you’ve got “the plan.” I’m not sure any dementia patient knows they have it or believes it if they’re told they have it.
14
Absolutely agree. Why would anyone want to live such an existence ? Expecting others to be taxed to support people whose brains are basically gone is madness. I would never expect my family to devote their time and money to care for me.
4
Caring for my aunt who had vascular dementia was the hardest task I've ever had. She became belligerent about taking medication, showering, etc. I felt I had no help from the healthcare community. She eventually had to move to 2 nursing homes which required her to go to hospital facilities where she was overdrugged and left a zombie. Finding a nursing home nearby that would accept her was incredibly frustrating. Eventually we placed her in a nursing home two hours away. They essentially let her die through lack of supervision and adequate care. It was a nightmare for three years. We should do better than this. Our healthcare system is a failure for dementia patients. And for family members. We are in a crisis because there are many boomers who are approaching the need for adequate care for dementia. The safety net is not there.
41
I find this article like the opioids article interesting because it is so pervasive in the fly over states. Is it in the water, the air, or the food they eat. Why do some pockets of people become so devastated while others soldier on, it doesn’t make sense.
9
The lack of adequate government support to individuals living with Alzheimer’s disease and their families in these situations is a disgrace to this country.
As to the tremendous challenges this family experiences with their dad, a lot can be done to improve things. It’s a shame that the article is predominantly focuses on the negative and that it ends with a negative tone.
It perpetuates the widely held stigma that nothing can be done to improve the emotional and psychological well-being of elders living with Alzheimer’s disease..
As Joanne Koenig Coste the author of the excellent book Learning to Speak Alzheimer’s said:
“Alzheimer’s disease doesn’t take people’s dignity away. We do.”
This does not mean to suggest that the challenges caused by the disease are not monumental and that they can’t be extremely challenging. They certainly can...but where is the way forward and hope in this Times article?
A missed opportunity to educate the public
Eilon
Gerontologist & Dementia Behavior Specialist
15
@Eilon As a doctor, I must say that I am equally concerned with the emotional and psychological well-being of the caregivers, if not more.
41
Why yes, where is the hope and the optimism? Such a shame the author couldn’t look beyond their family’s slow moving 24/7 tragedy to point to a better way forward. The author and editor must have fallen down on the job. Or perhaps they thought this story of incremental devastation might reinforce the overwhelming evidence that we need to make serious improvements to our systems and practices of care for people with irreversible, debilitating illnesses. One can only hope that enough people will pay attention at long last.
19
Yup.. I’m there now with my wife with Parkinson’s. Trump and the GOP give zillions in tax cuts so the mega millionaires can bigger toys... meanwhile we have to bankrupt everything to buy long term care... $12,000 per month can get your attention!
60
i can sympathize with the father who has alzheimers. my sweetie had an operation to repair her hip. after her discharge from a hospital; without ANY assistance, she got up from her bed and walked to the bathroom. i phoned a friend of hers (i was screaming into the phone!! her friend spent 2-3 minutes trying to calm me down (my sweetie has very little balance--due to a bad car wreck...
6
Medicare. For. All. Now.
25
@M. Medicare does not cover what is called 'custodial care" - which is what dementia patients need - help with bathing, dressing, eat, toileting, and mobility (getting up and down from a chair/toilet and walking around on flat surfaces). Medicaid does, but the places with 'managed Medicaid' are not covering nursing home residential care. The daily charge is likely as much or more than the daily payment the managed care company receives from the government to provide ALL health care to the patient.
13
What is termed Medicare in the US currently doesn’t cover this. However, Medicare can cover this and anything else the public wants it to cover if the elected representatives actually were representative of anyone or anything other than just their deep pocketed funders. We currently get all of the healthcare the insurance lobby wants us to have.
20
My sweetest, kindest, wisest, purest and intelligent Mon ,who worked tirelessly for 50 years raising 9 children with grace , faith and eternal optimism has dementia. She is 87. Maybe we will soon find a way to cap and rollback dementia and alzheimers.
18
You MUST get a geriatrician to see your dad and then help you to deal with the state's insurance companies. There are absolutely ways to deal with them doctor to doctor. You need a physician who will speak to the insurance company's medical director and explain what you know to be obvious. If you need any assistance, feel free to reach out to me. I've been doing this for the last three decades.
38
@Michael Thank you. I hope you can help.
2
To prevent wandering: place black floormats or rugs in front of each exterior door. People with dementia see/experience that blackness as a hole they'll fall into. How sad that this is only one piece of help when so much else is needed.
29
Despite the many stories like this the propaganda mill against National Health Insurance and for private insurance company middle men continues. The biggest lie, and the most repeated, is that people like their own insurance.
48
Dementia care is a separate category from nursing home care (medical) and assisted living (physical). Call it memory care if you like. It could be affordable, and it could be humane. It could be paid by Medicare. This is not brain surgery. Think.
Vote accordingly.
43
I hope that the next politician who says that the United States is the greatest country on earth has to endure what this writer does. I bet that she would not endure it in any European country. I am waiting for the politician who acknowledges that, by every significant criterion, we are the worst industrialized country on earth. Then maybe we'll try to catch up to the others.
41
After reading this,I am very grateful living in Europe this would not happen in the country where I live right now and where I was born.(the Netherlands)
It is shameful,for the so called richest country in the world,to treat his residents in this way
31
The VA in Southeastern PA was very helpful the last 3 years of my father's life. It was hard for my mother to let go of taking care of him but it was going to kill her if she didn't. The 10-year Arc of Alzheimer's is brutal. We, as a country, need to provide care facilities for the aged like the VA did for my dad. It is as important as free pre school, free grade school, and free college. We also need to get real about end of life decisions (I'm currently caring for a 92 yr old who has zero quality of life). It is good that your whole family pitches in for his care. I have made it known in mine that when doing this work we do not blame and nobody is at fault or makes mistakes because we are all doing our best. We are working for a smooth ending we are not staving off the inevitable. It is sometimes hard to remember that.
31
The NYT ran an excellent article in its Sunday Magazine section in 2015, entitled "The Last Day of Her Life." It's about Sandy Bem, who, when faced with an Alzheimer's diagnosis, decided to end her life while she still could implement that decision. It's a beautiful piece about a courageous woman's interruption of her descent into the depths of the disease. Google it!
58
@Cate I agree. The ability to make one's own end of life decisions when descending into dementia is critical to experiencing death humanely. That will be my choice as the time approaches as well. Thank you for saying this! It empowers the rest of us.
30
I would pay a substantial amount for a policy that puts me on a morphine drip as soon as I cannot take care of myself. Millions of Americans would as well. But that would reduce the income of health insurance companies and we can’t have that - when our government can be rented by the highest bidder.
58
@T Spot on
2
What a contrast with the superb care that my brother-in-law, who has Alzheimer's Disease, receives in England under that country's National Health Service. He is bedridden but is visited at home three times a day seven days a week by health care workers, who feed him and take care of his medical needs. And if his doctor is required, he shows up at the family home no matter the time of day or night. Contrast this with the Third World system in the United States where none of this is on offer except and unless one has the means to pay through the nose for it. Sad, sad, sad.
81
Totally agree. I am thankful everyday that my mum lives in England where support for her and dad who is her primary carer is excellent.
31
Where does dementia ends and Alzheimers begins? On a day-to-day basis, the outcomes are the same. Why are dementia patients treated as criminals when they have a major attack? if they had cancer they would be treated with empathy and care. Cancer is not their fault. Dementia patients are treated as if the they brought it on themselves - they did something wrong. We, who survive, flagellate ourselves forever. When will society, first responders and the like, understand this is a disease of the brain? The cruelest of diseases.
24
AZ is diagnosed by a brain autopsy; many dementia patients are said to have one or another disease but it’s not definitive.
7
We spend 3 months a year in Mexico. Many of our friends stay there full time. One of the attractions of Mexico is that the nursing homes are both cheaper and better than anything available up here.
Our town of choice is San Miguel de Allende.
31
Such an important topic often overlooked and sweep under the carpet. Silently, many families struggle and face existential crisis. Having had 3 family members with dementia, one can say with certainty that most American families are not capable financially, logistically, or emotionally of providing the care necessary. This is a time bomb about to hit the country's finances.
Instead of a family member's hard earned money being passed to the future generation, the medical industrial complex is at the ready to scoop up and consume 100% of it and then some of your family's savings. You need to have a financial plan +7 years out if you want to try and preserve anything. If American's medical industrial complex can't bankrupt you when you get sick, the plan is to take it all from you at the end.
47
I lost my 86 year old mother to vascular dementia after a series of strokes the past 4 years. Unlike ALZ the life expectancy of this form of dementia is usually no more than 5 years. She lasted barely three from its early onset and while she managed to avoid the worst ravages of the disease it was still very difficult for me as an only child to care for her even with outside help that Canadian health care covers.
That said, while some nursing home wait lists are long up here, it’s still possible to get into a care home paying no more than $3,000/month. The idea that anyone should be paying $8,000 is patently absurd but driven solely by profit and that’s unacceptable.
28
@Kris It's at least $16,000 a month in suburban NYC.
9
This resonates with me. My mother even did pretty well on the mini-mental exam. She could draw a clock with the correct time on it, for example. And she was amazingly good at covering up. But she lost all executive function. And memory. She left the gas on, she constantly harassed her neighbors, for all sorts of things. And then she got violent with her aide (whom we had to fight with her to accept, and she was such a sweet woman). She locked her aide out of the house. And aides need time off, they get vacation, and it was impossible to set up help 24/7. The long-care insurance claimed she fed herself and dressed herself and could walk, etc., so they refused to pay benefits (which only cover about a quarter of the cost of the facility for dementia patients). Until I sent a letter to the Ministry of Health. I complained, sending a copy to the insurance company, with all the evidence, such as reports from the fire department who had to come to my mother’s apartment when she left the gas on and left the apartment locked and the neighbors smelled gas, of the time she started a fire by putting a plastic container on a hot tray (which we got her after we disconnected the gas), and more. The insurance company agreed to pay out of what they termed “beyond the requirements of the policy”, as if they were doing it out of generosity.
14
My mother died from the complications of ALZ at age 76. We were very lucky to be able to access Medicaid to help pay the bills. We were also thankful she lived in a state with more generous programs. I lived 400 miles away with my son who has autism and intellectual disability. Talk about stress. Luckily my sister was able to carry the major share of the coordination of care for my mother. The stress of caring for my son (who has many of the same challenges as a person with dementia) has been challenging enough.
15
This piece will resonate with many who care for someone who is vulnerable and unable to care for themselves. If people think it is too costly to care humanely, they are not paying attention to the inordinate costs of our inhumane system.
Our bodies and brains do not last forever. Trees die, animals perish, waterways dry up. Not everything has a cure.
If we can accept that we come in to this world in need and will find ourselves there again before we die, we could address these needs with compassion. Staving off the inevitable is not logical or sustainable.
Just because you do not need an operation, drugs or therapy (reimbursable care) does not mean you should be left to struggle.
It is, in fact, much less costly to simply care for people where they are, physically and mentally. This means facilitating the people who do the care, rather than expensive corporate care. This means facilitating choices that don't commit you to only getting care if you are willing to try the next thing.
Professional caregivers should be compensated fairly and family caregivers should not have to give up their own livelihoods and health.
42
How sad that in this country the cost of nursing home care is so expensive, and family members have to quit their jobs to care for their loved ones as well as pay for help.
How sad that family members are not reimbursed by insurance companies if they are doing the home care.
How sad that in this country we can hire at least 10 full time home care workers at $15/hr for the cost that nursing homes charge, yet insurance companies, medicaid, medicare won't cover and the congress does not even feel $15/hr minimum wage is worthwhile. How do I know, my family has also lived through this.
41
I'm 69. My wife is 67. Thankfully, both of us are in very good shape...at the moment. My 93 year old, severely arthritic mother in law lived with us for 5 years, until two months ago, when she was admitted to a nursing home. She is on Mass Health now and the cost of her nursing home care will be covered by the state. But first, she had to sign over the remains of her finances to the state. She didn't have much money left, and we didn't need it, so it was no issue for us.
But in these trying economic times I worry about how so many younger people are relying on the financial help of their parents. When parents have to be admitted to long term health care, the entirety of their financial resources have to be turned over to the state. There is nothing left to be inherited. Nothing left for the children to fall back on. Yes, there are ways to minimize this impact, but in many cases the homes of the elderly, instead of being inherited by their children, have to be sold off and the assets given to the state for this long term health care.
47
This is why families abandon their loved ones at hospitals with no formal identification and let the authorities organize their future accommodation; even going as far as abandoning them overseas with better healthcare.
27
I certainly see echoes of our experience with my dad who had vascular dementia as he approached 90. We found for some time that help at home (at first 4 hours a day, then eventually live-in) was cheaper than a nursing home (the aids did cooking, light cleaning, and watched him - took walks etc, but only reminded him to take meds). At 90, he was reaching the place, though, where a nursing home was being considered as he became harder to manage at home. He died of a stroke before we had to make that move.
13
"I worry about my mom’s ability to manage my father’s medications,"
What "medications"? He has Alzheimers and you're worried about maybe his statin, blood pressure, vitamins, diabetes, etc. medications?
As if these medications would extend his life for even a day, and then only to extend for a day his suffering and yours.
Let him pass in peace. It's the right thing.
79
@Samm
Some medications keep folks comfortable by preventing symptoms which are troubling. e.g., a stomach acid blocker, an antihistamine, or an anti-inflammatory for arthritis; others prevent pain or offer a bit of sedation to ease anxiety.
35
We must obtain Right-to-Die legislation nationally. Most of us boomers have some experience with parents and dementia, and do NOT want to go thru this ourselves and burden family members.
I want to develop my own plan with accredited helpers specifying at what stage I want to end my life... painlessly and in a peaceful, loving environment.
69
My father also suffered these indignities before passing away. It is possible that the terrible effects of dementia can't be mediated, but no family should also have to suffer the indignities of having to beg bean counters for the most basic necessary assistance.
This is why we need Medicare for all.
30
As the article states, Medicare does not cover long term care and it is by no means certain "Medicare-for-all" would either.
26
@Nancy Braus What Medicare is not covering is the cost of assisted living care. So when one needs assisted living care but isn't yet ready for nursing home care it's a mess.
Unless M4A plans to cover assisted living care then this particular problem won't be solved.
8
Health care is a social good and society benefits from keeping its members healthy. But nursing home or memory care is not health care. It is not medical treatment. It is custodial care for people who are dying. The tragedy of increased medical treatment is that dying comes later and takes longer. Medications that are used in dementia only slow down a process that is unfortunately not fast enough. I am a physician that has advanced directive conversations several times a day, and it is striking that pretty much everyone says that they would not wish to be alive if they lose their mental faculties. I bet if he had a choice, the writer’s father would have preferred to choke to death than face what life will be like. The challenge for families is recognizing that dementia is a terminal disease; give people the compassionate option of dying when they are so far gone that life is not a quality that they have defined. Don’t treat the invariable UTI or pneumonia that comes up, stop all the blood pressure and diabetes medications, don’t treat a heart attack except for pain medications. This does not mean you love your father less, it means that you love him enough to follow through what his wishes were.
149
@AKM Thank you for these words of wisdom. We need to embrace the truthfulness that there is and should be dignity in dying when our former selves have been lost forever.
30
@AKM
retired AMA attorney F/71
Early 1980s, the most heated debate I heard around the AMA Board Room table as its federal legislative counsel was over whether the AMA should support pnuemonia vaccines being covered by Medicare as a "preventive" service. Residents on the Board were horrified that the oldest physicians were opposed to the idea: "pnuemonia is every old person's friend when it is their time to die."
This from a chain-smoking pulmonologist who was Chairman of the Board.
When the vote was taken and support was decided, this man looked at each of the residents and said "You will rue the day that this happened."
Now those residents are senior physicians begging families to not call 911 with all the standing intervention orders that entails. "Don't treat UTI or pnuemonia . . .diabetes or a heart attack except for pain . . ." That "don't treat" option is all U.S. AD families have as a lawful option.
Bible-Belt politicians here will forever block any humane assisted-death laws like Canada now has and the Swiss have had for more than 100 years. Fortunately, the Swiss welcome non-residents, but all have to arrive to drink the juice while mentally competent to consent to do so.
My DIGNITAS date is 2023. Sole caregiver while young for my grandmother and while old for my father has taught me to appreciate a good life and mind and lay a timely plan to skip the 14 year arc of Alzheimer's.
55
@AKM Where I live you can give a directive not to treat anything if you are within 6 months of dying of a terminal disease (as estimated by a physician). But dementia is not recognized as a terminal disease any more than life is recognized as a terminal disease. It is considered a chronic disease, but not terminal. (Yes, you can have dementia for years, is their argument.) That means if you don’t also have cancer or serious heart problems or some other life-threatening disease, you can’t say “don’t give me antibiotics or don’t treat my pneumonia” nor can you leave it in your directives in the event that you have lost mental capacity. The logic is “we don’t know if you wouldn’t change your mind if you still had it”. Of course that is insane, but those are the limitations of our “continuing power of attorney” laws.
17
Thank you, Ms. Interlandi for writing this article.
As many of the commenters have mentioned concern about their treatment should they develop dementia, I would like to let them know that the group Compassion and Choices has a Dementia Provision form that is an addendum to an Advance Directive.
SEE:
compassionandchoices.org/wp-content/uploads/2016/02/Dementia_Provision1.pdf
17
I have Dignitas bookmarked on my computer, and, of course, advanced directives clearly indicating no tube feeding, artificial respiration, DNR. It doesn't seem nearly enough for those of us who wish to die before a life like this is thrust upon ourselves and our loved ones. We need right to die legislation at the federal level.
30
I know that as a society we are not yet ready for this, but I wish that health care proxies and do not resuscitate orders could be expanded to allow a person of sound mind to specify what type of care they wish at different stages of dementia, which should include, in essence, no care. I do not want my offspring diverting their efforts from rising their children to dealing with the shell of a person I would be in an advanced stage of dementia, nor do I want a lifetime of savings intended to help them reach their full potential frittered away on my demented self. Once my mind has gone, let me go as quickly and as painlessly as possible. It would be better for all concerned.
74
This is an enlightening article and tracks the lives of several of my friends. Yet our citizens have repeatedly decided that full coverage medical/long-term care is not a service we are willing to pay for and I don't see this changing within my lifetime.
This is one of the several reasons I fully support self-directed euthanasia. Euthanasia is to me, a much more humane response than leaving a family struggling to care for a chronically disabled person. And as a single person with no children, my nightmare scenario is what will happen to me if I become disabled and I have no advocate. I would rather be dead than be subjected to the whims of the U.S. medical system.
47
My mother, never an easy person, had some dementia issues related to TIAs and mini strokes. Although I was not a primary caretaker it was a nightmare lasting over a decade. I am now the age that she was when the worst began. I do not want to burden my child and grandchildren emotionally or in any other way. I try to be vigilant and I do have long term care insurance and US insurance and Israeli insurance as well. A decent nursing home is not a bad solution. If available and affordable.
9
@Retired Teacher
“A decent nursing home is not a bad solution. IF IT IS AVAILABLE AND AFFORDABLE “
This sums up the problem that is becoming as big as the pain killer epidemic of the young, in America. For all of you people who think Elizabeth Warren Medicare for all is crazy, I suggested you read this article again. The rich will be ok (not good) but ok with the up coming dementia epidemic, but the rest of us are going to struggle to get and pay for a dear family member and what if you have two in the family?
This is a disease hits everything that is near and so dear to every part of our being, for the person with the disease and every family member. We are not ready to face this disease
18
Maybe this article explains the rise in suicides? Patients and their guardians have no obligation to take antibiotics. Refuse them and nature will take its course. Death with dignity is a preferable choice.
39
I have discovered from bitter experience that dementia destroys *everyone’s* memories. Not just the person who has it, but his or her loved ones’ memories of who that person used to be. I wish I could remember my dad as the brilliant, charming, vibrant man he was. It is heartbreaking I cannot.
89
The costs of not only dementia but extreme old age are staggering. Even without dementia, first class assisted living facilities will drop your family 120,000 a year or more. Add other services, including dental and psychiatric care and 150K might be the budget at the high end. Most the family inheritance may be go for the last five or ten years of life most of which is spent in a wheelchair, watching television and commiserating with fellow old timers. Dementia of course, is not only a financial disaster for most families it is a horrible psychological and physical burden for caretakers.
What we need or should have is a Marshall Plan, a Manhattan Project or a Moonshot to conquer dementia. Medicine has made enormous progress with cardiovascular disease to the point where a presidential candidate had a heart attack, was fixed in the hospital is not back on the trial dancing it would seem. Many cancers have been defeated by medicine and the work continues. HIV, if you remember the 1980s was a death sentence. By the mid 1990s it became a chronic disease. Today, it may soon be curable.
Big pharma and publicly funded research is ongoing with dementia- it should be accelerated. As for other maladies of extreme old age, they too should be the focus of high level research to attenuate and perhaps reverse aging.
18
@Yankelnevich
How goes the "war" on poverty, or the "war" on opioid addiction or even the "war" on cancer?
The Manhattan Project was to create a mass killing device--worked quite effectively. These other wars have only served to create many entities which depend upon the continued struggle, not achieving the victorious end.
Look at how effectively the sellers of glucose strips have suppressed any new innovators who might end the revenue stream of those many times a day consumables.
5
I have told my children that if I get dementia, buy a very small house in a modest neighborhood, fix the front door so I cannot open it from the inside, put a sturdy fence around the back yard that I cannot get out of, unhook the stove, put in a microwave and a refrigerator, and have people supply me with food, clean the place etc., whatever I need. Don't spend all my money on a nursing home.
I hope if this happens I have sense enough to quit eating and drinking. But who knows.
Government Pell Grants to aid college students are $6,125 this year. Care for my 102-year-old mother exceeds that every month; she does not have dementia. She just can't seem to die despite wanting to. We are depriving future generations of education while having to spend enormous amounts on the elderly. I do not know the solution.
60
@MayCoble If a person with dementia is left at home and deemed "in need of care" by social services that person will be required to go to a nursing home anyway.
4
My wife and her family recently were in a similar situation where her father was caring for her mom until it began to overwhelm him. Like anyone who has been in this predicament, it was extremely difficult to watch. She fell and had to be hospitalized and it was recommended she not return home.
My father-in-law hired a family estate attorney to apply for Medicaid. It was certainly expensive but somehow they were able to get Medicaid approved to cover the expense of nursing home care.
Most law firms who deal in these matters usually hire someone who had previously worked for Medicaid so they are able to navigate the Byzantine laws and requirements. And their fees are steep but worth it as they usually get the desired outcome.
It is indeed a sad comment on our society when we must hire lawyers in order to secure the medical care our loved ones require. Those without the means to hire a law firm yet have assets in excess of Medicaid standards are trapped in a financial and emotional nightmare also as tragic as the disease.
50
@Emile deVere ,
Medicaid is intended for the indigent, not for people who can afford family estate attorneys. Taxpayers, who fund Medicaid, should not be expected to fund the choices of the wealthy...many of whom spurn the poor.
16
@Naomi Rucker I am confused. How does an attorney help? One applies for Medicaid when one nears the point of exhausting resources down to a state legislated limit. Do the wealthy somehow get around this?
8
Ask yourself, how much would you charge to be screamed at, spit on and struck by an angry man for whom reason holds no power? The fantasy that compassionate, individualized care can be “affordable” is just that - a fantasy. The aging dementing poor will end up warehoused in Medicaid-funded dumps where too few underpaid, hourly-wage, mostly immigrant staff do what they can to spoon-feed, diaper, bathe, cajole and deflect the violence of their confused patients. The affluent will spend down their fortunes at the rate of $10,000 or $20,000 more each month and maybe get better care or at least some carpeting and fake plants in the lobby of their loved one’s facility.
What is a reasonable solution and who is going to pay for it? I’m on my way out of the workforce and can’t believe it’s fair to ask today’s young working adults to pay for my long-term care needs. I never had children and cannot imagine my husband’s or siblings’ kids could or should derail their lives to babysit me. Our plan is to eventually use the bulk of our retirement savings to buy into a lifetime living community where we can move from independent- to assisted-living then onto memory care and skilled nursing floors before ending up in urns someplace in Florida. I count us lucky that while we won’t leave much to our heirs, neither will we burden them with our care needs.
52
@hey nineteen what an honest comment. How refreshing that an older person thinks of the needs of the young rather than the needs of the elderly...
9
Thank you for clearly explaining that Medicaid will not guarantee to pay for care for dementia without profound physical impairment, and that Medicare pays nothing for long-term care.
So many people do not understand or do not want to believe this.
Assisted living facilities may not take a patient like this, but nursing homes with dementia units will. It costs a fortune.
34
My husband was at home with me as sole caregiver until 40 days before he died. He refused day care and home care. The last day at home I was advised to call 911 and he was in an ER psych ward for 48 hours, then a psych dementia unit at a hospital. It’s not easy to find a bed in a nursing home for dementia when you need it. One horrible place because he was discharged to it, then I found a fine one for the last two weeks. We had saved, and I could have spent the $400K/year that the best home in NYC charged but they wouldn’t take him. I spent days calling homes. Not once was there a social worker at the major NYC medical center where he was treated for 4 years who met with or prepared me for any of it.
41
Comment 1:
Ms. Interlandi: If you haven’t already, you can make the case that staying at home is no longer a safe option for your Dad. Leaving the house, returning with a stranger and smoking are examples of this. I suspect that you can think of other situations that his changes in behavior might harm him or your Mom. Please know that I don’t want to alarm you but am making this suggestion in the hopes that it might help
persuade the insurance and others that he isn’t safe at home.
Shortly after my mother was diagnosed w/dementia w/auditory hallucinations at 94, she walked out of our house in the middle of the night 3 yrs ago. I didn’t realize she was no longer in the house. I never dreamed that she would do something like this.
Fortunately she dressed appropriately for Nov. and took our phone numbers with her. She walked a few streets over and knocked on a stranger’s door. The kind people in the house called the police and my sister was notified. I became aware of the situation when my sister came into our house accompanied by a policeman. My sister was afraid of what she would find after talking to my mother in the ambulance. As she was hallucinating, we think that she either thought she had killed me or that I tried to kill her. She was admitted to the local geriatric psychiatric unit. From there she was went to a nursing home.
5
@M. Natália Clemente Vieira
Comment 2:
I wanted to care for my mother at home. But I was afraid of what would happen in the future. We were lucky she wasn’t harmed when she wandered the neighborhood during the cold night. If this were to have occurred again, it is my understanding that the law in Mass would consider this a form of elder neglect or worse. The state could have taken over the care. My sister and I could have lost the rights to make decisions about our mother’s care.
The nursing home isn’t a perfect solution. She speaks very little English and few people there speak Portuguese. I am there every day to check on her and keep her company. I bring her dinner to make sure that she at least has 1 meal a day that she likes.
At times she makes perfect sense. At other times she doesn’t. At times there is no reasoning with her. Her reality is what the voices are telling her. There is no way of dissuading her that what the voices are saying isn’t true. So I go along with her story. I try to make her feel safe. By the time this saga ends, my nose will be longer than Pinicchio’s because of the tales I tell her.
I take solace that my mother still recognizes us and that she can still do something she loves, crocheting. I try to find humor in dealing with this nightmare of a disease; one which afflicted her grandfather, her aunt and her 4 siblings.
16
@M. Natália Clemente Vieira
My father-in-law bundled a blanket under the covers to make it appear he was safe in bed, and headed down the road in his slippers carrying his stuff. My wife had alerted our local police that he might wander; they called us when he was observed a quarter mile from our house. He refused to come back--we were "trying to kill him."
Kept in hospital overnight, admitted himself to a local nursing home, never came home again.
4
My mom has Alzheimer’s. It’s a long lonely scary way to end an otherwise caring life. I read your story because we’ve shared your pain. Sorry.
47
As someone outside of America looking in, it is difficult to understand why you are not all marching in the streets. We recently lost my grandmother to dementia and it was awful - without the additional stress of worrying about her care, which was largely paid for by the government as soon as she needed it. When I get sick I can go to almost any doctor I want and my insurance covers it - all of it. These stories of people in America struggling to access basic health care (even when they have insurance) are far too common and yet you've been quick to write-off the idea of medicare for all as "crazy" or "socialist". Really? Is this an example of the health insurance you are all so desperate to keep? There are third world countries that are doing a better job of looking after their sick and elderly.
206
Same thoughts as you. I'm Belgian but live in Paris. My mom who has Alzheimer's is in a nursing home in rural Belgium. It costs only 1.500 €/1.700 $ because everything medical is paid for. If her pension were lower than the cost, the state would cover the difference. The facility is perfect, she's happy there and I can relax, visiting every two months and talking over the phone. In Paris intra muros it would cost 3.000 €/3.400 $ and she would here too get aids if she couldn't afford that.
40
@Elle : You're overlooking the thrust of the OP-ED piece"
"For example, there’s a lovely assisted-living facility just two miles from my parents’ apartment. But it costs $8,000 a month, on average,"
No insurance or single payer coverage will pay that amount for the ENTIRE growing population in need, for an indefinite duration.
9
@Jp
So explain why the problem doesn’t exist in New Zealand? Or the rest of the civilized world?
21
Yes, I know it well. My mother was disabled with Alzheimer's for 7 years. Thus, once I recovered from the shock of my diagnosis of ovarian cancer 3 years ago, I realized it was a blessing in disguise. If I happen to live long enough to develop symptoms of dementia (unlikely), I will stop my cancer treatments, let nature take it's course, and consider myself lucky. And my insurance covers my cancer treatments. Thank you for the moving article. You and your family are in my thoughts.
39
@NS
My mother died from ovarian and liver cancer in 1988. If you'll please excuse the following phrase, "It was a blessing" for her and the rest of the family. She had advanced Alzheimers and death ended her daily, hourly, minute-by-minute torture from total confusion.
7
Dear brave sister in parent tragedy. Such a brave heart-wrenching story. Perhaps, take heart for a moment’s respite. You’re not alone.
52
Even in states where assisted suicide is legal, most require two doctors to attest that you are 1) terminally ill, and 2) are of sound enough mind to make such a decision. That is unfortunately not going to be true for dementia sufferers.
Another point: what happens to those -- like me -- who have no family who can help take care of me, either physically or financially? There are probably millions of us in such a circumstance.
66
Worldwide 50 million Alzheimers. Thanks for sharing. Now I know that my parents and all of us have to go through the same ordeal. Bless all of you.
16
My mother-in-law moved from Romania to Germany (she had German citizenship because of her heritage) but had never lived in Germany. She was alone, wheel-chair bound due to advanced MS, and had no money. The German system took her in and paid full costs for full time care in a beautiful, sun-filled elderly care home. She spent the rest of her life there, until age 89. By the end, she was nearly blind and could move only one arm, but she was treated like a Queen.
The German state only asked for money from her 3 children after they because financially self-sufficient. Because one of the three never moved to Germany and another had minimal income, only my wife had to pay. But it was a nominal amount because they took into account that we had two children.
I LOVE socialism!
179
@Eddie : Indeed. The USA is a prisoner of its own hubris, willful ignorance and denial, and the manipulative mendacity of its rightwing traitorous greedy megalomaniac politicians and their zombie supporters. Pity the USA it's a weak weak nation.
7
I can barely read the many poignant comments below. My father had a never properly diagnosed dementia with aphasia at the end of his life -- terrible mood swings, progressive inability to speak coherently, wanderings, a fear that he was being poisoned. My mother's partner got Alzheimer's -- stealing from stores (in his case, loaves of bread which he would hand out to passersby), incontinence, inability to recognize others. In time the memory losses passed into a separate personality. In an assisted living center in Houston, he thought he was the first clarinet in the Boston Symphony Orchestra.
Both of these happened simultaneously. Fortunately neither lived long. I have never stopped being grateful for that. I have no idea how I, my mother and stepmother would have fared had these conditions continued over a long time. Good luck to all trying to navigate this on their own.
48
being in the same boat as most of the writers, i will say i worry most about my loosing the ability to take care of my loving wife of so many years. its such a difficult job i've been thrust in, but i'm so glad that i'm able to return the love and help and friendship that she has given to me all these years.
25
This is the country in which we live. One in which people who suffer a cruel blow of fate after a life of work are left to fight by themselves, perhaps treated to the added indignity of being told that they are responsible for their predicament because the 'didn't save enough' or they 'should have earned more'. Meanwhile we seem to be rich enough to afford fifteen nuclear-powered aircraft carriers (fourteen more than any other nation, three times the total number of aircraft carriers of all other navies, friend and foe, combined) and to fill the pockets of defense contractors with bundles of cash. When will we awaken from this travesty of 'civilization' served up to us by the GOP on behalf of its corporate lords and masters, rise up and scream 'ENOUGH'?
122
My husband has dementia from a childhood brain injury. His memory loss has progressed a great deal over the past few years and resembles Alzheimers. He does not have mood swings or fits of rage but he does share many of the same difficulties with logistics and language. He would never shower if I didn't shower with him. He doesn't remember to wash his hair and if he did he wouldn't remember to rinse the soap out if I wasn't there to help him. Patience and gentle humor are important and help prevent the anger of frustration. I reason with him to get his cooperation and I ask questions to give him choice. A Pocketfinder GPS that clips to his pants can be helpful and allows independence. Mike takes only Magnesium L-Threonate, Lithium Orotate and Alpha GPS. He eats very little sugar, no stimulants & an organic plant/protein based diet. I do not make his unique behaviors or struggles wrong. I don't make his memory loss wrong or not waste time wishing he was the way he used to be. I see him struggling to maintain a normal life and I support him as he is. My advice to anyone in this situation is look for ways to help the person with dementia have independence, self respect and light heartedness. Don't resist or judge; embrace every stage of decline as a new normal. That helps to alleviate the stress and fear of dementia, helps calms anxiety and provides an atmosphere of supportive love and reassurance. Appreciate yourself for your efforts. You are invaluable to your loved one.
35
@LuAnn If you have cared for a patient who had dementia, you might get this joke: "I used to do scientific research on dementia, but I kept forgetting what I was trying to ... swim."
1
Regardless of the cause, when I can no longer take care of myself, when I can no longer understand what I read, or when I can no longer remember the highlights of my life, I’m done and want to be put down, just as we would a beloved pet. Why is this not a legal option.
108
I didn't read that the family had consulted an attorney who is an eldercare specialist. If they haven't done so, I recommend that they do. The insurance companies are not advocates and protectors of the elderly who suffer from dementia and their families who care for and suffer with them. Attorneys who are eldercare specialists are even though they do not work for free.
32
Ms. Interlandi—
A bit of advice from someone who’s been there: retain an elder law attorney if you can. They can advise you on the Medicaid rules in your state and also point you to other benefits your dad might be eligible for. We learned, for example, that my father qualified for a veterans disability pension I’d never even heard of. We also learned not to spend our own money on our parents’ care, since preserving their assets just delays their qualification for Medicaid. Sadly, they have to be destitute before they are Medicaid-eligible—yet another indignity Alzheimer’s inflicts.
75
My father's severe, prolonged and terrifying experience with dementia led me to revise my Living Will. As soon as I appear not to have all my wits about me, my instructions are to do whatever can be done to shorten my life. Whether the law at the time will allow me to die as compassionately as a family pet is unknown, but I hope I can avoid a similar suffering that tormented my father for years.
84
@Paul in NJ I so agree with you and I'm going to make every effort to figure out how to proactively end it. Dementia is tough because one has to make that decision while still functioning at a high level. I hope I have the courage to do so.
34
@Oh please : Very true words. It cannot be easy to commit suicide, but I refuse to have a cent of my hard earned savings be spent on diapers and caregivers, nor to destroy the lives of anyone in my family to caregivers to me. The courage to end it while one's wits are still about is an absolute must and it will be difficult, but do it I will if I ever receive a diagnosis of alheizers/dementia.
7
@Paul in NJ that's my plan too.
1
This story is being played out year after year by hundreds of thousands of families all across America. Mine was one of them.
My dad and stepmom did everything right. They worked hard and lived prudently, and when they retired they owned a comfortable home outright, had small pensions and modest investments to supplement their social security, and no debts. Then Daddy came down with Alzheimer’s and my stepmom with Parkinson’s.
At first my stepmom was able to pick up the slack created by Daddy’s diminishing mental capabilities while he picked up the slack created by her diminishing physical ones. And we took up the rest, managing their finances and hiring help. But as their diseases continued to ravage them, we ultimately had to move them into assisted living at a cost that would take your breath away. And over the years, it took every single asset they had—including the entire proceeds of the sale of their home—to keep them together with the care they needed. By the time they died, they were totally destitute. And I was frankly grateful their minds were so far gone these lovely, proud people—who had done everything right—hadn’t a clue how far they had fallen.
There is something profoundly wrong with a society that raises its national debt by over a trillion dollars in order to give billionaires and multimillionaires more spending money—while ordinary Americans have to spend everything they worked a lifetime for just to cover their end-of-life care.
434
@Steel Magnolia
Profoundly wrong is the only way to call such a state of affairs.
However, the underlying problem is that too many people outlive their brains.
Too many people outlive their ability to be useful to society.
The cost of this is staggering.
22
My parents are ageing mostly well. Four kids, strong network. Both are sharper than any thumb tack.
Recently our mum was admitted for a simple procedure with a 3 day recovery.
I cried like a baby for 2 days. I do not know how I would cope if either of them got dementia.
7
Wake up America! Here in Germany this kind of problem does not exist. Of course, the government gatekeepers try to be vigilante, but they are compassionate. A German resident and American citizen.
2
I went through this with my brothers and sisters as we watched my mom slowly decline. It started in her 60s but didn’t slide into the chronically horrible and sad situation that it became until she reached 82. It took her life at 88. My sympathies to all who are going through this with loved ones.
49
My husband was diagnosed with Alzheimer's at age seventy - although in retrospect he showed many signs of the disease years before. We did not purchase long term care insurance. Our grown children had lives of their own in other states. I was left alone to handle the situation. Eventually I needed to place him in respite care locally when I visited our first grandchild. The facility cost over 100G per year. When I returned after only a few days, it was obvious he had been neglected. He even had diaper rash. Unable to care for him any longer as I have health issues of my own, I placed him in a memory care facility near one of our children. The facility is excellent and costs half the price of the NY nursing home. I am moving to be near him and my son's family. We were fortunate that my husband had an excellent pension and we had substantial savings. My husband also remained as kind as he had been throughout our long marriage; many dementia patients become violent. The emotional and financial toll on many families is immense. Our society should be ashamed of itself for neglecting the needs of its most vulnerable, senior citizens who contributed to this country and now are being tossed aside like an Inuit elder relegated to an ice floe at the end of his life. The Inuits performed senilicide only in dire times-and then they believed the individual was going to a better life. What's our excuse?
146
I feel for you. My mother is in her 7th year of the disease: late stage.
Her home has been basically turned into a nursing facility. Thankfully Medicaid covers her 24/7 otherwise we couldn’t do it and she would become an even bigger burden on society.
Best of luck to you.
19
Wow - Medicaid covers in-home care?
Thank you. My husband and brother-in-law are currently dealing with the same for my mother-in-law. Until you are in it, you don’t know the nightmare Alzheimer’s/dementia is. I wish your family the best.
45
Friends in NJ finally put mom into a care facility in Maryland for about 80K a year. Mom lasted two more years, not recognizing anyone and forgetting speech and losing height and body mass.
Medicare for all would work better than the current abomination Medicare Advantage or Medicaid Advantage guaranteed to provide returns for shareholders and jobs for lawyers and CEOs.
Alzheimers or other dementias cannot be avoided... but our ridiculous system or providing medical care and many other things (housing for the homeless) can be fixed. Vote Warren.
91
It is not possible to provide the level of elder care you are demanding for every American and still provide the services most folks really need, and I’ll respect Warren when she hauls off and says so.
10
@Robert This! Not enough people understand this. Too many people want to hold on beyond what is reasonable.
5
@Robert: Of course it is. It's all a matter of how much tax we are willing to pay for the coverage.
17
My thoughts are with you and your family. As the adult son of a mother with dementia, I can definitely relate.
What is terrifying, from a public health perspective, is that we are only at "the tip of the iceberg" with regard to the incidence and prevalence of dementia among the Baby Boomers. If we do not muster the political will to create a public system of long term care, I dread to think of the chaos that will be unleashed. But the can keeps being kicked down the road and the lie that government can't do anything (and, among some, shouldn't) persists.
I really dread the world that my nieces and nephews will be inheriting, but they can have a great deal of influence over what they will inherit if they become politically active, which I hope that they will.
59
You are a good daughter. I wish your family and you all the very best.
I appreciate the many comments here too.
50
My state offered horrendously expensive long-term-care insurance -- the guarantee was that Medicaid would pay your bills once the insurance ran out. People bought these policies, insurers made their money, and the state reneged.
I can provide my cat with a comfortable passing. Myself, not so much.
75
@JustUsChickens
In fact there are a few states with beautiful scenery that allow assisted suicide. I hope that most of us will not have to face this...but it is legal and possible.
In some cases where assisted suicide is not legal, a friendly MD will allow one to amass the pills needed for the deed.
OTOH jobs in care homes, assisted living facilities have dignity and pay well, unlike the jobs many people abroad have making good for the American market.
There are several discussions here.
3
@Auntie Mame
retired AMA attorney F/71
Terminology used is assisted-death, not assisted suicide. To probably unsuccessfully damp down backlash from the religious zealots.
As discussed in my replies and Comment here, neither the "few states with beautiful scenery" nor Canada, under its new MAID assisted-death rules and programs, include dementia diagnoses (AD or vascular).
That leaves Switzerland only if we get there before cognition starts to fail. Must have the requisite mental capacity to consent. To drink the juice.
41
@Auntie Mame I don't know how you came to the conclusion people in nursing homes are adequately paid, much less well paid, but from my experience working in one that is simply not true. I made slightly more than the state minimum and had a rotating schedule. There was high turnover; if someone didn't show up, then you had to cover their shift. The residents ran the gamut from sweet and malleable to belligerent and violent. Working in such a facility is not for the faint of heart. Oh, and occasionally you might be sexually harassed.
15
So sorry to hear about your family’s struggles. My father recently died of complications from Parkinson’s, and I had met with a lawyer a few months before to discuss financial options for his care. He was a veteran, so he could get coverage from the VA after 6 months to a year if my stepmother spent about $20,000 of her savings. For Medicaid, she would have had to spend down about half of her savings, which is not a comfortable idea for a 75 year old retired person. She and my nephew took care of my father for years as his dementia progressed and he lost more and more of his mobility. It took a huge emotional toll on them. I am thinking about marrying my boyfriend who has dual citizenship with Canada to avoid a similar fate in my old age. Our system is inhumane.
55
@AF
retired AMA attorney F/71
Canada does not include any dementia diagnoses (AD or vascular) in its assisted-death programs. One Canadian comment here suggested that this "evolving law" surely would soon include dementias, but that is unlikely for all the reasons made clear by policy makers in Canada and U.S. states that also exclude dementia diagnoses.
Our genes are our destiny. Find and read my replies and Comment here on accessing assisted-death in Switzerland. Requires straight forward history and documents + a sound mind to provide the final consent. To drink the juice.
I go 2023. DIGNITAS. Zurich.
Always all ways a good idea to have a spouse or strong Power of Attorney holder to be our advocate when we cannot be. So that marriage idea remains open to discussion? At least your potential spouse can't say that he didn't get a glimpse of where your genes likely would take both of you?
6
@AF: Indeed it is. The fact that you have to bankrupt not only yourself, but your entire family, before there is even a chance of public assistance for this horrific disease is nothing short of amoral.
@n.c.fl ; you are kinda fixated on "drinking the juice".
You've repeated that phrase at least 10 times in this thread alone.
Being realistic about death is one thing -- LONGING for it is another.
Suicidal ideation in a person who is still quite healthy is not normal.
I think if you show up at Dignitas in perfect health, rambling on and on about death and "drinking the juice", they'll kick you out.
I guess you never heard the saying "Make God laugh today -- tell him your plans!"
NOTHING is as simple as you say here -- where you can simply plan your death four years in advance.
Life does not work that way.
I spent the recent Thanksgiving holiday with relatives aged in their 80s and 90s. The 90-something male has had lewy body dementia now for four years. This holiday found him screaming at a long-time housekeeper for the family to get out of their house, seeing pandas in the back yard, refusing to sleep, and then we had to call the fire department to extricate him from the lift he became entangled in, since our combined strength could not lift or move him. There are home health aides in the home every day and careful attention paid to medications, toilet needs and feeding. Since they promised each other no nursing facilities, this is their daily existence, punctuated by fleeting moments of clarity. No one is able to come and save the day here; all attempts to advise or ameliorate their situation have been rejected; at best, all that I can do is to be available when the inevitable crash happens with one or both of them. I pray it will not be much longer for him.
51
@No One You Know
Legend has it, in the old days, the Eskimo people dealt with this type of situation by placing their loved ones on an ice floe with a few days of food.
My father died of a massive stroke. He sat in a reclining chair, turned on the TV, and was totally unresponsive when called to dinner. At the hospital, his heart was beating, but he had no response to stimulus. He was dead in 24 hours.
That was a blessing.
69
@RM My father had rapidly declining Alzheimer's and after taking him to court to become his legal guardian (a very painful, awful process) I placed him in memory care. I was grateful when he passed from a brain bleed 6 months later because watching him disintegrate was unbearable.
7
I just don’t know what people are supposed to do. My mom is in a wheelchair and has broken both of her arms falling, and my dad’s dementia has raced forward in the last two weeks. My mom can’t get out of bed, and he can’t lift her. The kids all live across the country. We can’t seem to find the care they need. It is impossible and horrible.
My husband and I bought long term care some years ago. It was very expensive, but we think it will be well worth it someday.
30
Your long term care insurer will set ridiculous obstacles in your path, require endless paperwork, and deny/delay paying your benefits for as long as they can. They denied my mother’s benefits for almost a year because they did not consider her her disabled. In what world is a blind woman with dementia NOT disabled? When they finally agreed to pay her benefits, the monthly payments were less than half the cost of the memory care facilities in our area. We had to place her an hour’s drive away. While dealing with the innumerable bureaucracies involved, I had to take time away from work; dementia affects not just the family but the productivity of family members in the work force.
Long term care policies are not the panacea they promised to be.
Individual efforts to meet this scourge will be as inadequate as trying to stop a plague on your own. It takes community action, a national will.
8
@Deborah Klein
Please contact the local Office of the Aging for their county and the local Alzheimer's Association. The Alz. Assn. has aa 24/7 helpline and an online Navigator tool. Both are free and may suggest a range of options, including working with their doctor to get rehab for your mother and/or hiring a geriatric care manager to coordinate services. At the very least, someone in the family should have a clear health care proxy to communicate with providers and a durable power of attorney. From a former Minnesotan--hopes for help to all of you!
My mother had Alzheimer’s, my grandmother had it and now my sister was diagnosed with early Alzheimer’s about three years ago. My mother was able to stay in her home with around the clock aid and my sister is in a very beautiful facility and is happy , for now . I’m thinking that I’m next , eventually .
I tell myself that if I keep reading The NY Times on my phone and writing comments it will continue to stimulate my brain cells and maybe I can avoid it , I hope .
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@KarenE
retired AMA attorney F/71
As my farming grandfather used to say: "If wishes were horses, beggars would ride."
Our genes are our destiny. That includes me as sole caregiver while young for my grandmother and while old for my father. Both had the typical 14-year arc of Alzheimer's. Favorite cousin now well into early onset AD in CA with lifelong partner lamenting the fact that he/they did not "get to Switzerland in time."
Your genes are your destiny. Find and read here my replies and Comment on how to access assisted-death in Switzerland. Lawfully welcoming non-residents for more than 100 years.
I leave for DIGNITAS Zurich 2023 or sooner. Qualify now on pain from four car wrecks that each destroyed different parts of my spine. My 74th birthday is 2023 and I will get thru my assisted-death while my brain unquestionably meets the Swiss law consent requirement. To be able to drink the juice.
Already gifting substantial sums to long-time friends and their kids to support college and grad school. And have arranged for ALL of what my care would cost over the span of AD to go in 2023 IRA bequests-on-death to two special people in my life. All good.
No "hope" in my calculus, but do have choices built around a viable plan!
42
@n.c.fl ; given your genetic predisposition (which is never set in stone, just a POTENTIAL)….you may not make it to 2023.
What then?
What if you have a stroke, and are paralyzed and cannot travel? or a major heart attack, ditto?
I would not want such critical plans to be dependent on "how I feel in FOUR YEARS".
I have a friend right now, who is very ill and on dialysis. Four years ago, she was in splendid health in her 60s and going on vacations and cruises!
You cannot game the future.
Sorry.
My mom was diagnosed with Alzheimer's around 2015. She moved in with us when our kids were young. Our house has a good in-law arrangement. In exchange for her help with our kids, we said we'd be there for her.
My mom was a nurse and saw suffering. She purchased a long-term care policy that has been a godsend. Once we had the diagnosis, I went in her room and saw tall the unopened mail. The policy lapsed but we were within. the reinstatement period for people with cognitive issues. The policy was reinstated. Now we have a elder care person come M-F, 9-5. At night and on the weekends, I take over. Changing dippers, ensuring meds get taken, keeping her save and comfortable.
Why we are willing to do raise a baby but won't take care of an elderly parent is beyond me. It is a small sacrifice. I've found it somewhat cathartic. Caring for an elderly parent can be good for one's soul. Knowing she is well cared for makes it much easier for me to sleep at night.
As others have noted, her personality has changed. She does not wander, but she gets mean and lashes out. Short stays at respite care have not gone well. The bruises on the arms, and the high cost with the lack of individualized care. Asking my mom to do anything takes a lot of time for her to understand what you need her to do, and then to make sure she is OK with the decision. Elder care facilities don't have time for this level of care, even at $7,000 a month. That is hard to understand.
33
@Stew, I agree with what you said about caring for aging parents. It’s true, if you can do it for a baby, you can do it for a parent. You are a good person to care for your mother. I think such compassion feeds the soul.
30
@Stew
retired AMA attorney F/71
Been where you are twice. Some reactions to your description of common problems:
Have you read The 36 Hour Day for ideas about what you see and what may be coming?
I relied on AZ-model PPR: stable People/Place/Routine. The most important part is keeping away people who become unknown and cause fear. Her "fear" reaction is exactly like my in-house father's until I created my divert-this-brain question: "Dad. Can you help me X?" Eye contact. Wait. Fear gone because person is known/safe and an over-learned response kicks in. Last name to get his attention was "Captain" because he was a WWII pilot and long-time flyer before those years.
Respite care, in most cases, means the AD person stays where they are and caregivers retreat for their rest?
Last, if there are kids and noises or pets constantly stirring your ambiance, her fear and fight mode may escalate? Can you realistically get to stable People/Place/Routine? In her space? Not yours?
13
It is very hard to care for an elderly parent with Alzheimer’s the way one cares for an infant. Infants are helpless creature waiting to learn life skills. Our parents raised us and were wiser, smarter and stronger. It’s difficult to see parents as they age becoming weaker, older and infirmed. Our heroes have become our children or infants. The role reversal must be staggering.
I know that it would have been very difficult for me to face the Herculean task of caring for an elderly, demented parent. I was lucky that my mother, at age 102, was well cared for by others. I can’t imagine how difficult and tragic it must be to deal with a loved one with Alzheimer’s on a daily basis. The toll it takes on the caregiver(s) and extended family are devastating from what I’ve seen and read, but then I must be preaching to the choir.
The callousness of the insurance companies is staggering. Knowing what we know about the behavior of Alzheimer’s patients, to deny coverage because one is ‘not old enough’ is mind blowing. We pay and pay as young adults into middle age, and then when we need that coverage, we are denied.
My heart goes out to all the caregivers dealing daily with the cost of Alzheimer’s on their loved ones.
47
I’ve watched numerous couples and families navigate this course. I’ve seen the disease drain bank accounts and fracture families. However, based on the writer’s description, I have to agree with the care coordinator that the father here is not ready for state supported care. As difficult as he may be at times, he still functions pretty well. And he has a loving family to care for him. I worry far more about those who are alone and declining, or who have a spouse to care for them, but no children, or available extended family. It’s the people without backup who are most at risk.
Yes, it is true that our health care system does not offer an an acceptable range of alternatives to home care, or provide affordable home support. Yes, the system is broken. But it’s also true that we all have a duty to care for our family members. Remember that our elders are not necessarily safer in nursing homes.
13
My mother started showing signs of dementia in her early 80s. She was a widow and living with her bachelor brother, who never really understood that she was sick and not just behaving oddly and badly. As she got progressively worse, finally, he threw her out of the house, even though the reason he had the house was that my mother gave up her share of her own inheritance.
Anyway, that meant, at age 92, my mother had to come live with me, a bachelor already on Medicare himself. My long term lady friend, who spent half the year with me before, got disgusted with my mother, as she was always domineering and the dementia made that worse. The only help I had was an elderly lady in our town who would come over twice a week to bathe my mother.
When she came to live in my house, I set three rules in my mind as to how long she could stay. One, she had to be able to dress herself. Two, she had to be able to feed herself any food I set before her, and third, she had to be able to get out of bed, walk, and go to the bathroom herself. After three years, she stopped getting out of bed.
She went to the hospital with pneumonia, and was released to a rehab facility to try to start walking again. She refused to walk, so she stayed there for six months until she died.
Those three years she lived with me aged me ten years. She died four years ago at age 96, and it took three years after that for my blood pressure to return to near normal.
90
Living in a state that gave us the Terry Schiavo fiasco, I have tried to make whatever plans I can if I am incapacitated for whatever reason. I don't want my spouse to be tethered and burdened taking care of me and to exhaust our financial resources to no avail. If my quality of life is so poor, I would like to make room on this planet. I have a living will that includes the clause for my spouse to fly me to a place where I might die. I also have a living will (the exact size of a driver's license) in my wallet, right behind my driver's license stating in red bold letters that I have a living will with contact info (my spouse, my sister and my lawyer). How sad that we live in such an adversarial system that will bleed us financially and cause such stress to our friends and family.
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@theconstantgardener
No current state or country will euthanize you based on a living will.
My mother has Alzheimers. She's 95, I'm 70. I'm an only child and if I outlive my mother I stand to inherit a nice piece of property that's been on the family for 100 years. On the other hand if my mother needs long term care that I can't provide we'll lose everything.
So I'm in a battle to take care of my mother at home. I'm still healthy and capable, but if I got ill or injured we'd both be in for a descent into uncertainty and poverty. It's a lot to live with.
95
Elizabeth Warren and Bernie Sanders include long term care in their Medicare for All plans. Their plans also include dental , vision and hearing.
As you can see the opposition from the "status quo" special interests and the "don't raise my taxes ONE CENT" billionaires and large corporations is huge. We have to be loud and support each other. Nothing will change until we vote for change and it has to be BIG ,STRUCTURAL CHANGE
180
@L. Finn-Smith What's equally important here is to know what their plan says about what specifically qualifies one for long term care. Would the author's father qualify fo it? I am grateful that they are considering that, and I also believe it is appropriate that Medicare cover dental, vision, and hearing.
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@L. Finn-Smith
I understand your need but on what basis do you think you are entitled to take someone else’s money ?
2
Warren and Sanders are out of their skulls—or worse yet, lying like crazy—if they think the country can afford all this.
I am one year beyond my Mom passing away from Alzheimer's. She spent the last eight years of her life at the same facility, moving from senior care, to assisted, to two different memory care units. The care was superb, but it does cost money. It is mission impossible to try and care for an Alzheimer's person in one's home. Navigating the system can be a challenge. Get some good advice. There are plenty of people who have been there and done that. Good luck!
25
@Allen R. McCaulley
Many oldsters would benefit from assisted living in properly designed and affordable units with a few amenities -- Google cars cannot get her soon enough for me.
1
and yet Mission Impossible is exactly what most of us in the real world are doing.
5
We got lucky. My parents were moving into a retirement community, when a room on the top floor came available, with amazing views, at no extra charge. The hitch was it's furnishings had already been picked out by a couple who backed out at the last minute. Would my parents accept the unit as is? They said yes. It came with a Cadillac health plan. They pay one monthly fee that never goes up.
So when my father developed Alzheimer's and began to throw tantrums and threaten my mother, we got the facility to move him into a special Alzheimer's unit for ambulatory patients. The move was hard for him, but once he moved and settled in (he is now in a small ward that has more staff than patients), he calmed down. His only job now is to get up and out of his bed and come to dinner. He jokes with the nurses. He tells the same jokes every day and they always laugh and gently tease him back. Things have worked out. Even more amazing, his Alzheimer's has stabilized. It's progression has slowed. That might be due, in part, to the amazing care he is getting. The company does an excellent job at staff retention, and Dad's favorite nurse has been there all along.
The community my parents live in has about 20,000 residents, and with those numbers it can provide many forms of specialized care. It also accepts Medicare, and it staffs with licensed health care professionals. One of my father's on-site physicians is a psychiatrist who specializes in Alzheimer's.
26
@Mary M
Wow. This sounds like a slice of retirement and Alz. heaven.
20,000 residents. Amazing.
Raleigh regularly comes up in many articles describing a lot of quality and varied styles of senior housing at all need levels.
(The more moderate and temperate climate doesn't hurt either! Makes it very attractive vs. living with snow and cold.)
Maybe there are lessons to be learned from Raleigh and applied elsewhere.
14
@Mary M Where is this mythical island? Are there unicorns for the patients to ride? I'm happy for you and your family that you were able to find such a great place at a cost that didn't bankrupt your whole family. I wish we had even a tenth of your luck with my mom's care. I fear for my own future as a single woman with only one child.
20000 Residents? A small city. How on earth does it work?
If this isn’t a convincing argument to at last confront our dysfunctional, profit-centric, miserable excuse for a health care system, I don’t know what is.
The days leading up to the passage of Obama care saw countless hysterical warnings about government bureaucrats making health care decisions instead of physicians.
Now, as then, it wasn’t the government bean counters at fault but the private insurance corporate stooges who are the real life interlopers, the dreaded “death panels” who are preventing needy patients from receiving the care their policy is purported to provide; health care people pay for, expect to receive and too often find out that “the fine print” and some faceless private insurance corporate money-monger denies them help in tragic moments of crisis like this poor father.
We, as a nation, a nation of millions, many of whom may wake up tomorrow and have no idea of what today or yesterday even means, must not tolerate this perverse Interpretation of “health care” any longer.
86
This is a crisis. Our family just went through it.
In its advanced stages Alzheimers brings on "behaviors," some of them violent, that require medication. Most nursing homes won't accept patients requiring those medications and with those behaviors. It doesn't matter whether or not the disease has advanced beyond the family's ability to provide needed care. "Reasonably" priced facilities will not admit them and facilities equipped for advanced Alzheimer's care are unaffordable. We were told by our hospice care provider that our only alternative was to drop our loved one off at the hospital and leave, in essence, making our loved one a ward of the state.
This is the state senior care in the US. I wrote our state elected officials and heard nothing. I wrote our Congressman, Ted Lieu, and heard nothing. Ostriches, all of them. Wealthy enough to afford care for their family while the middle class drowns in the reality they won't address!
108
My husband and I have paid for long term care insurance for 15 years. I still live in fear that when we need help the insurance will find a reason not to pay.
My mother got into an awful assisted living facility paid by Medicaid. We could not move her to a better one because once you have a placement, no matter how bad, you are no longer a priority. They actually killed her by medical error after 6 months and when we sold her house Medicaid billed her estate for 57 thousand dollars.
Unless I have a medical condition that incapacitates me quickly such as a stroke, I will never go into a facility. I’ll take care of it myself first.
35
@Cindy Mackie, my mother went into private assisted living, by her own choice, even though she had children willing to take her until their homes. She died soon after. I was not the child monitoring her care (she lived far from my home), but I got the impression that the facility just left her in her room, on her own. It’s shameful what goes on in these places.
13
Optimistically the biochemists will understand what goes wrong in Alzheimer’s and in the next 10-20 years it will be a thing of the past in the US like the polio epidemics. But it won’t be done without people signing up for clinical trials.
10
"Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion;
Sans teeth, sans eyes, sans taste, sans everything."
Shakespeare, As You Like It
Certainly more oblivion than childishness. Alas too often "sans everything".
Sometimes there is no happy end and no happy road to that end.
36
My favorite person in this world has this disease. She’s a strong Brit who married my American grandad and led a super active life. When she slowed down about ten years ago, we didn’t quite get it as a family what was going on. Doctors said a mini stroke. I truly hope we have a breakthrough in this horrific disease soon. Just adding an additional note, we now know you can detect these signs early. And not to be a political person, there is a candidate that is exhibiting all the same traits as my grandmother. It is heartbreaking, but once they forget basic things, like where they are, that’s kind of it.
37
@MM A candidate or a president? The Congressional pharmacist said that there are several Congress members taking Alzheimer’s drugs. This should have to be disclosed to their constituents.
2
Mind is a terrible thing to waste and Alzheimers disease (AD) is a wasting disease that drags the families along as this sad story of Jeneen and many like her tell us. It is one of the 10 leading causes of death among those above 70. Financial burdens are heavy but think of those who do not have caring family members who can step in take charge to ensure that there are no unending indignities or mistreatment of AD patients. AD is not an infectious Disease but the misery is transmissible to family members and care takers.
Aging is the major risk factor for AD. Genetic predisposition to Alzheimer's disease linked to the presence of ApoE4 allele or family history of acquiring some other abnormal alleles can also be risk factors for AD. For decades now the big pharma invested in drugs to cure AD. That was certainly a lofty goal but not a practical goal and they have found it the hard way. In my humble opinion if the goal was to to not attempt cure but try slowing the progression of AD would be a more appropriate goal that could bear fruit and ensure the longest period of quality life for both the patient diagnosed with AD or predisposed to AD and to the family members. What I propose is early intervention (EI) for at least those who are genetically predisposed. Before failure of big pharma to come up with a cure, research groups including my own are exploring early identification of those predisposed to AD and soon beginning EIs that have proven to be effective in mice models.
12
My husband and I live in Canada where MEDICAL ASSISTANCE IN DYING has now become law. Physicians, nursing staff and care aides who object to performing this task are at liberty not to offer MAID, however they are obliged to refer the patient who has asked for it to a provider of Maid.
Unfortunately Dementia and Alzheimers do not fall into the criteria which have to be met to permit MAID. There was a case recently of a man with Dementia who was successful in fulfilling the criteria with his Physician.
There are numerous restrictions, and rules and criteria which have to be met in order for the providers to be satisfied that the patient really wants to go ahead with the termination of their lives.. They are at liberty to change their minds at any time. The rules are strict. But what a relief it is that this is in place. I feel sure that it is an evolving law, and my hope is that in the future they will allow individuals to make that determination while they have their wits about their future, should they be afflicted with this cruel condition.
32
@Lolita
retired AMA attorney F71
I salute Canada's Supreme Court for making this happen and your courage for trusting this "evolving law" to catch up to dementias. I don't share your optimism.
Find and read here my replies and Comment on non-resident assisted-death in Switzerland. So that those being excluded from MAID assistance can have a realistic expectation of an end to their suffering?
10
@Lolita I think if, while still competent, a person states that they don’t want to live with severe dementia, their wishes should be honored. My mom started showing symptoms at around my age, and if I could, I would sign permission now for euthanasia if I develop it too. I don’t want my children to go through what I did.
25
We are seeing rising levels of dementia in the elderly and autism and other issues in the young. Clearly something is happening, but what?
We've made tremendous gains in keeping the body functioning but appear to be losing ground at keeping the mind alive.
I've seen the effects of dementia in family and it is frightening.
I'd counted on following the lead set by my father and grandfathers and dropping dead on my feet around 60. That didn't happen and the prospect of long slow decline - physically and mentally - has no appeal.
In the past one had a large family which served as your safety net. No longer. Our children are just finishing college - it will take time for them to become established. We've saved for retirement but clearly, nothing is enough when you look at inflation, health care costs and all else. Frankly, with declining wages you're lucky to make enough to get to 'retirement ' much less afford it.
39
@cynicalskeptic , the push for healthy lifestyles and modern medicines have helped lengthen our lives--but now we outlive our mental capacities more often. And the costs are staggering.
15
@cynicalskeptic: The author's father had a large family - 9 adults available to help - and it still wasn't enough. It's never enough.
23
A clarification: The *rate* of dementia is actually lower than it used to be because of better diets and healthcare. Really. That said the rates are much higher for blacks than whites likely due to poor conditions earlier in life.
But the *number* of people is growing because there are more people living longer and also the baby boom generation is large and reaching older ages.
15
Ten States have now passed some version of a "Right to Die" law, but all of them make an exception for dementia. There has got to be some way, to sign a legal document, prior to the onset of the disease, where a person can specify when and under what circumstances they want to end their life.
I have really tried, and failed, to understand how one segment of our population feels it has the right to tell me how I must end my life. Past time for some changes.
90
@ET
retired AMA attorney F/71
The limitations of the "right to die" laws and state programs are a horror unless a person presents an easy-to-defend diagnosis like late-stage always terminal cancer. Parkinson's? MS? ALS? Pain from well documented sources or causes? Nope.
I am working with an OR resident, a family that moved from CA to OR to be able to have "better" assisted-death options under state programs. Didn't happen because it is a butchered in cancer reconstruction surgery, intractable pain, not terminal now diagnosis.
We are getting this family into DIGNITAS Switzerland. A membership organization that provides information and drink-the-juice services for those who qualify under Swiss law. Usually takes two to four months with situations like my OR friend.
Family members can join the last flight to Zurich and stay in beautiful glass-walled green-outside calm apts to the moment of death. The relief for the one dead and for the family is palpable. Suffering ends.
That suffering yoke lifted includes those who have return flights to this country and now know where their assisted-death pathway can be. Always all ways sleep better at night after.
35
Yes, Atul Gawanda’s book “Being Mortal” is certainly worth reading. And the Israeli film “The Farewell Party” is well worth watching. It deals deeply and compassionately with these difficult issues centering on quality of life and who controls how and if we choose to continue.
17
And 45 wants to lessen requirements on nursing homes because they are burdensome.... I am glad I live in a state that has 'death with dignity' so that, if I am diagnosed with dementia (from which my mother died), I can take matters into my own hands while I still am cognisant.
34
@Lee, wary traveller Unfortunately, once you are diagnosed, no doctor will attest that you are of sound enough mind to make a decision for assisted suicide. Besides which, dementia does not kill within a certain amount of time, and assisted suicide laws demand that you be terminal.
What will it take for us to ultimately accept that every moment of life is a gift and there is no promise of tomorrow? As my own memory fades, I’m loving technology that allows me to organize images, add names, and create breadcrumbs to hopefully travel back from the approaching fog.
18
I wish you fortune with your plan. However, my beloved husband, now 81, was diagnosed with Alzheimer’s in 2007. We have moved into a retirement community that provides every level of care, including memory, and more emotional support from my new friends than I could have imagined living in our private home. My husband is no longer capable of turning on a radio dial, much less other tech tools. He was a dean at a University library and can no longer read (one of his great joys). His eyesight is excellent but his broken brain can no longer process the messages. I have many friends here who have a spouse in the memory care section of our large community. They visit daily and try to keep some connection, but sadly this is frequently a one way journey. And as an added fear and burden, if our loved ones are violent AND incontinent most places will kick them out. One mental facility in our state will still take them but the wait list is long! The monthly expense is obscene and our country is careening toward a massive crisis as more retire.
If you are having memory problems now I urge you to finalize every legal issue now because, sadly, you may not have any ability to take care of yourself or make your wishes known, or to take joy in the moments of life you have left.
I feel so deeply for the family in this story and all who have shared family reality with us.
15
Getting access to a medicaid nursing home seems to require the patient to be in Stage 7 Alzheimer's. You pretty much have to be at death's door to qualify. So medicaid for alzheimer's has become a farce: you care or pay for your parent on your own, then you can get what is effectively hospice care.
"Stage seven is the final stage of Alzheimer's. Because the disease is a terminal illness, people in stage seven are nearing death. In stage seven of the disease, people lose the ability to communicate or respond to their environment."
20
My mother got three or four days of hospice care, that's it. I had called the doctor's office the week before and told them "she's dying," but they didn't believe me. So she might have gotten a few more days of hospice, that's it. All the rest of her care came out of pocket, or I did it myself. She basically got no coverage for anything.
5
My very intelligent scientist father had vascular dementia. He found his limitations just too unbearable and exhausting-after 8 years of struggle- 4 in a nursing home. He never became hostile or combative and continued to show humor which endeared him to the nurses. When he could stand no more he said : " I have had enough of this. If it is alright with you I am just going to crawl up in this bed and stop eating and I am asking you to support me in this and do not let them feed me." I was able to support him despite some medical objections about placing feeding tubes being standard. His own doctor said he had the right to decide. It is not a fast death-starving. It takes a lot of courage. If I ever am told that I have this disease I am lining up possible methods. Why we cannot get help I do not understand.
My father was a dear, kind, responsible, joyful person. He also left a professional job with a good pension and lifetime health coverage over and above Medicare and healthy Social Security checks. It takes every bit of that especially as he had to have a private room as his roommates found certain behaviors upsetting. He used to pack up their things and his own and promise that they'd find a way to break out. He did several times . He never figured out what state he was living in despite my getting him a daily newspaper and driving him to lunch and dinner in a sea of license plates. This was not the sort of evidence based thinking he would have missed before his illness.
90
Whenever I read or hear these awful stories, I always think of a middle-aged woman who lived in a rural, sparsely-populated area and was the sole caregiver for her elderly mother with Alz. There were no local agencies or elder day-care centers to help her and her mother, so she did all the work for at least seven years. She was utterly exhausted and at the end of her rope. Then one day, when she was in the car to go grocery shopping, her mother wandered outside, the daughter saw her chance, and ran her down, killing her. This was more than 20 years ago, and I still remember the outrage. "She killed her own mother!" "How could she do that!" I felt nothing but pity. She was found guilty -- I think of manslaughter -- and served her sentence, getting out early on good behavior. I always wondered if she was able to have some quality years after it was all over.
60
Day care centers usually don't take patients with Alzheimer's and agencies are prohibitively expensive. My sympathy is with the daughter, and I'm glad my mother died after 3 hellish years, or I might have committed murder-suicide on the two of us. Frankly, there are days that I'm not glad that I survived her, to be honest.
16
My mom is 86 and was diagnosed 5 years ago! She had a bad memory crash at that time. In retrospect there were signs for years before her diagnosis. Like many Alzheimer’s patients she played it off well fooling her doctors too. Her Nuerologist said we are lucky that the two available meds are working for her. I also give her MCT oil daily and would recommend care givers to do their research and decide if it right for them. Don’t get me wrong I’m her only caregiver and it’s difficult and heart breaking. It could always be worse!
13
Well, paying "contractors" a fixed price brings to mind the first principle of every capitalist business plan:
Provide the least amount of service for the greatest price.
56
I am in a similar situation with my father. And all the commenters below have already listed the outrages that are the health care system and this horrible disease. But regarding the outbursts and rage you describe, my father was on the verge of getting kicked out of the Memory Care center where he resides because of violent outbursts and after some research we decided to try CBD oil. He's been on a moderate dosage since July and has not had an outburst since. Not saying it is surefire but maybe worth looking into for your situation?
50
I so feel for this family. They are in the worst of all worlds, no long term care insurance, an uncertain future under Medicaid assuming that the author's father can qualify and, perhaps worst of all, a dementia sufferer who still knows that he is ill. My wife has dementia but in every respect she and I have been more fortunate although I know that can crumble. Awareness of one's illness is uncontrollable but, no one with dementia nor their family members should have to suffer because of lack of access to adequate care.
15
Medical science has increased our quantity of life but has made worse its quality. Too many people are kept alive long past their shelf life, whether the problem is physical or mental disabilities. I remember stories of the Eskimos taking an elderly couple who could no longer pull their weight in that brutal environment being put into a canoe and pushed out to sea---and they graciously accepted their fate. I don't know if those stories were apocryphal, but compared to warehousing people for years and ruining the lives of their children and family members, it doesn't seem like a bad idea.
35
@baldinoc , well, I think that putting your parents on ice floes--however "graceful" they may be about it--is still at the bottom of my list. I don't think you do get to kill them quite yet.
5
This hits so close to home. I helped my mother take care of my father, who had Alzheimers, and then moved in with her to be with her, which was good because she later developed vascular dementia. We were able to keep my father at home and I was able to keep her at home. We are not wealthy, but through a combination of union retiree benefits, good help, and a job that gives me flexibility with my time, we did it. Or my mom did it with my help and then I did it with outside help. It shouldn't have to be so hard, but in a society that too often treats the elderly like disposable problems, rather than people deserving love and care, it too often is.
45
My father died of dementia, having suffered the indignities of pulling off his diaper; wandering away from his care facility wearing just underpants; being locked in a nursing home ward with baby toys for stimulation; and enduring shock therapy to control his rages. When death finally came, he hadn't remembered my name in years.
Should Alzheimer's or any dementia befall me, I've already told my family that I want to stop taking food or drink to keep myself alive. I absolutely do not want to be a financial drain, and cannot imagine my adult sons feeding or changing me. I have all my paperwork in order so there are no questions. I just can't think of another way to avoid becoming a version of my father. However, our dog had a very dignified death surrounded by family and wrapped in his favorite blanket, with a veterinarian there to gently send him into a forever sleep when it was his time to go. I wish we humans could look forward to the same.
491
@MountainFamily
I am so sorry for all your father went through, and which you also had to endure / witness.
Am 1000% with you on my own plans should this emerge on my horizon. The key is to remember not to eat or drink, even when memory fails. And to have no one, well-intentioned or not, trying to override that choice and those wishes.
My god, good luck to us all!
89
@MountainFamily
retired AMA attorney F/71
Unless laws in this country change 180-degrees, your family and friends cannot honor your request without risking prosecution for criminal conduct. Any assistance-in-dying is unlawful, even in usually more sane MA.
Consider this instead: 1) Get an APOE blood test to see whether you have the alleles that may portend dementia developing, usual age of onset with females is about 74. 2) Get Invitae's current and future genetic tests for early onset Alzheimer's that may prove useful in late-onset too. SKIP 23&Me because it is unscientific hooey.
Set a plan to leave for Switzerland's assisted-death by joining DIGNITAS now. It's a membership organization for all who may need to access that country's long-standing laws that welcome non-residents who can meet its reasonable assisted-death requirements.
I qualify on pain parameters now with every expectation of Alzheimer's developing within a few years: at-risk APOE test result 20 years ago and Invitae panel shows at-risk genes. Just like my paternal grandmother and my father. However, I've opted out of the 14-year disease arc that causes endless suffering in this country.
I fly 2023 to Zurich. One way. Before I lose the required mental capacity to consent to drink the juice.
96
@n.c.fl
Thank you. This is also my plan. I did not know about DIGNITAS. Thank you for all of the excellent information. I have the genes, the history and the symptoms. You should not book that flight too soon. I hope to have many more years of competence before I make my flight. Good eating, dedicated exercising, and leading a fun fulfilling life has been proven to extend the time of "good enough" and competent cognition. I am attempting to live my life to the fullest in the time I have left!
43
I think it’s essential to have a plan, and to stockpile the narcotic means over time, if necessary, to end my life at the moment when I still can, should I have an Alz diagnosis. And failing the ability to obtain enough narcotics, I will be clear, since I do not want to live, and burden my family, with Alz, that I do not want to be made to eat or drink once I’ve made my decision to go. $7000/month from my children’s inheritance to keep me alive with Alz? Over my dead body.
120
@Ruth D’Eredita I think a lot of us agree with this. What kind of a country is this where people plan their own deaths because they cannot be cared for humanely, all the while with so-called insurance companies and nursing home companies making money hand over fist?
64
@Ruth D’Eredita the problem is that, even with a decent stockpile, by the time life is no longer worth living due to advanced dementia, one may no longer have the cognitive ability to follow a plan.
5
Everyone: It's not the complete solution, but it is the exigent one.
Medicare for All. The 2020 elections. You know what we have to do.
74
@DianaF Medicare does not cover long-term care, and the insurers here are right in that medical policies do not cover the situation described. What is needed is not just health insurance, but a much broader social safety net that would cover this family's situation. I would suggest a few things that could be done now. First, find a support group. There are many families going through this. You can help each other. Second, consult a geriatric care manager (there will be a fee) who can assess your father's condition and the totality of the situation and recommend interventions (e.g., security equipment) and community resources (e.g., respite care). You might also consider a session with a financial planner who can assess your resources and recommend the best way of stretching them to meet your situation. I am so sorry for your family. I pray that you come to a better place.
19
@B Lundgren
You probably didn’t mean to discourage that plea for a vote given your clear outline of how inadequate our systems are.
Medicare for all is a start. It’s a sea change in recognizing the desperate lack of care straits we are in. When I listen to my sister in law talk about the guaranteed elder care her family has in the Netherlands, these stories in our country sound like the US is at the level of health care on a wagon train from the 1840’s.
38
@Sarah I am a nurse and a health policy analyst by training. I am not against an expansion of Medicare, but it does not address your situation. Medicare is still health insurance, not a broad safety net. European countries spend much more than we do on social services (like elder care), much less on health care and have better health outcomes than we do. We place too much emphasis on health care and too little on meeting basic human needs like those of your family.
57
The moment we recognize that all people have value, the systemic marginalization of vulnerable populations, including senior citizens will begin its long overdue march towards extinction. That moment is long overdue.
26
When will we start recognizing dementia as the medical diagnosis it is. When will we stop trying to divide the neural and cognitive diseases from every other disease or injury? Health care is no longer care. It is bad business. And stop with all the advertisements telling us that living at home "independently" is the optimal situation. It isn't.
68
@Moira Kiltie : before I put my 91 year old aunt with dementia into an Assisted Living home, I tried desperately to keep her in HER OWN home as that is what most people want.
I hired home health aides from a well known, heavily advertised agency -- bonded, licensed, insured.
Within THREE DAYS, the aide from this place (supposedly vetted, criminal records checked, fingerprinted) had stolen my aunt's cash, checks, jewelry, fur coat and anything else she could get her hands on. The aide's boyfriend was the instigator -- she had told him about "the rich old white lady I am babysitting" and he did the dirty work.
This despite me making random checks without warning on a daily basis. (BTW: my aunt was not remotely "rich" -- she was living on a $1100 a month SS check.)
Police were called -- the woman arrested -- it was a huge mess and horribly upsetting to my aunt. The agency apologized and sent a new girl.
In six weeks, that aide had stolen money and taken my aunt's credit cards and gone on a shopping spree.
BTW: the cost of this? $23 an hour in 2013. That's about $15,000 a month or $180,000 a year.
1
Sigh. That’s my response to this essay.
It.Doesnt.Have.To.Be.Like.This.
Listen people, the majority of doctors know nothing about how to take care of old people. Know nothing about how to manage geriatric syndromes including dementia. Let alone know anything about payment systems, Medicare, Medicare Advantage, Medicaid or the rest. Forget about your doctor.
And people? Your dementia-suffering loved one is approaching the end, in years or less. How would THEY want to live under these circumstances? Not drugged up in a nursing home which unfortunately is how most people like the father described in this piece will end up.
Listen, people, you will have to pay out of pocket one way or the other.
Welcome to 21st century healthcare in the fading, Roman Empire, good-old U S of A.
36
My mom is in a care facility right now with dementia. I moved back to my home town, where her place is located, to fill in the gaps at the facility--- $6000.00 a month and the care is not perfect. But she is in a safe, friendly place; one that makes A LOT of careless mistakes based on cost and profit. It is sad and painful to watch her decline: the bruises, the falls, the casual care. But it is a gift to be close and her advocate --- I will be with her to the end.
58
@Santa Monica Susie Similar story here in NEOhio regarding “care” facilities. It wouldn’t be AS bad to swallow if these LTC facilities would not lie about how great their care is. Even if it costs out of pocket $6000 to $8000 a month.
We were never warned in advance how casual the “care” would be—-to the point where I believe it was the excruciatingly painful pressure wounds that ultimately led to my parent’s death in a LTC Memory Care unit of an assisted living facility.
18
It is not just Alzheimer's or dementia. My wife is battling cancer. She has had radiation treatments and chemo. Currently, she is receiving immunotherapy treatments. For the most part she is able to function normally but sometimes she gets disoriented and confused. Largely in part due to the drugs she is taking for pain, dizziness, nausea and the big one anxiety. She now gets frequent infections and there are many trips to the hospital. She now has heart issues. She is suffering immensely. I am up all night with her and worried sick. I refuse to put her in a facility. We have had that experience. The help I need at home is just not available or at least help that I could afford. Medicare does not provide the home healthcare she needs. What we do have is hope.
40
@Joseph And Medicare is going to provide less home healthcare starting Jan 1. Google for it.
2
@Joseph : for all the good Medicare has done for over 50 years….it was never, ever designed to provide LONG TERM NURSING CARE.
The confusion is that it DOES cover rehabilitation in a nursing facility after some hospitalizations -- up to 100 days per year.
But typically, they kick you out long before that.
My elderly aunt went through several long illnesses before having to go into Assisted Living. The last nursing rehab center she was discovered she has run out of her 100 days -- and kicked her out in 24 hours -- I mean literally, she was dumped in the lobby, her clothing in a black plastic garbage bag -- at night!!! thank god, a staffer called me so I could pick her up!
This was a place that got $500 a day for 100 days -- do the math on that! -- from Medicare, but could not give her 48 hours to find a new place to stay.
2
It took six months of waiting, a month off from work, and 1,800 pages of financial records and receipts going back five years to get my father qualified for Medicaid to pay for part of his nursing care. Very small, innocuous transactions were flagged by the Medicaid office. A $280 check my parents wrote me for the purchase of a wheelchair for my dad was deemed a "disqualifying transfer," and when I submitted the receipt from the medical supply company, the Medicaid office required a "verification letter" that the wheelchair was not for my personal use (I'm in my 40s and quite ambulatory and healthy, thank you).
Meanwhile, the current federal tax laws allow the intergenerational tax-free transfer of wealth up to $22,800,000. Families that have $23 million dollars do not need to apply for Medicaid. If they did, the rules would be fairer and simpler.
273
Many of us reading this heartbreaking article are at risk of getting Alzheimer's or another form of dementia, whether we have a family history or not. But there is something we can do about it right now. Volunteers for Alzheimer's clinical trials are badly needed. A look at clinicaltrials.gov shows that at this moment 254 trials around the country are looking for volunteers. People with various degrees of affliction and people who are cognitively normal are both being sought. No preventive or cure will ever be discovered without first being tested by clinical trial volunteers.
55
Since my mother died of it, I'd like to be part of a clinical trial, but keep seeing that I'm not qualified.
2
At 60-70yrs old, I provided direct care to Alzheimers residents in a county nursing home. Humor, "old" memories and love are possible late into Alzheimers.
You can extract old memories fairly easily. Each day you can build on their life experience block by block. And when their perception fails, you can pull from your inventory of memories to gain trust and get the job done. Life is worth living until it isn't. Love.
22
But how do families get their family member into such a facility and what does it cost, and are such facilities anywhere near families that need and would welcome such patients?
26
@Kathy Sadly, it takes lots of money. In NC anywhere from 8 k-10 k a month per person. Both my grandparents ( 1 paternal and 1 maternal) received this care until they died. Total bill was approximately 1.2 million for both of them and that was 10 years ago. It’s immoral how dementia patients are treated. I am 50 and I try to save everything I can knowing that if I or my husband receive this common diagnosis, that we will entirely be self pay and we still won’t have enough. Other advanced countries pay for this care for their citizens. Some countries add a 1-2% tax starting at 40 years old to help fund long term care. Meanwhile, we have one party that campaigns on lowering taxes and may win again in 2020.
31
@Kathy Another alternative is PACE- the Program of All-Inclusive Care for the Elderly - they help people at the nursing home level of care remain at home as long as they can while supporting family care givers
there is a PACE program in Chapel Hill and they can help you
5
My mother, her sister and their mother all started showing symptoms of Alzheimer’s at age 75. I am 75 and showing no symptoms yet. I was somewhat lucky that my mother had moved back to the European country of her birth and was well taken care of for very little money. Her family members were not helpful at all, and as this was pre email, I’d fly over several times a year to take care of money and personal matters for her.
I just hope my long-term care insurance company is still around if I ever need them.
18
@Joyce
retired AMA attorney F/71
Or you could remember that age 74 is the average age of onset for the earliest symptoms of Alzheimer's? Lay a plan to get to Switzerland and assisted-death before ANY symptoms that would negate your consent start to emerge?
Get an APOE blood test for at-risk alleles? Get Invitae's early-onset Alzheimer's genetic panel done so you may see what is coming? Do both now? Then add those results to your first-degree family history to qualify for assisted-death before symptoms emerge?
I qualify under Swiss law for pain from four car wrecks that destroyed my spine. I leave 2023, age 74, at the latest for DIGNITAS Zurich so there is no question about my mental capacity.
I choose to pre-empt the 14-year arc of Alzheimer's that I know well from being caregiver to paternal grandmother and father. Your family's genetic destiny is your destiny too?
3
@n.c.fl Please, enough of the Switzerland advice. Consider that most people do not have either the logistical nor the financial ability to consider it.
5
@Sally K.
Swiss assisted-death organizations are funded by members. Fees run around $9K and are often waived for those who who need the help and cannot afford the fees.
Read these comments and consider this cost profile compared to the rare excellent AD facilities ($5-7K/month in FL) or the worst nursing homes imaginable routinely chosen and sometimes paid for by Medicaid.
I provide a service though my law license was retired 2013, shortly after my AD father was cremated. You choose to discard the ONLY option many have worldwide on "logistical" and "financial" grounds, I wish you well. Better genes than 50M others, a tsunami, now have.
4
My mom had Alzheimer’s and I know how devastating it is to see your loved one literally dying by inches. My parents were fortunate in that they were able to be together in an assisted living/nursing facility in Orlando, Florida which wasn’t cheap but which was manageable for our family until they each passed away.
My question is this: with a problem this costly where are the news reporters investigating how Alzheimer’s is handled in Canada? In Germany? In France? In England? This disease is common in all aging populations. How do other nations manage it? I don’t think I’ve ever seen a single story that covers this issue in terms of management except to hear how insurance companies keep people from getting the aid they need because it costs them too much.
142
@B. Rothman
retired AMA attorney F/71
Reporters going to those countries would find current law and customary practice much like this country.
All of the residents of Canada, Germany, France and England who seek to skip the 14-year arc of Alzheimer's go to Switzerland. Long a haven of lawful assisted-death under reasonable documentation and consent requirements. Find and read my longer Replies and Comment here for your pathway?
8
@B. Rothman
I just finished reading two books on the subject by British authors- Nicci Gerrard's "The Last Ocean," and Sally Magnussun's "Where Memories Go". My impression from these wonderful books was that it's not that different in GB for families and sufferers, and reform is needed in order for people to get the kind of respect and care they need when there is dementia involved. People are paying more and more despite still being grateful for the NHS. Solutions are needed and we are going to have to come up with them pretty soon. I wish we had some sort of forum to help develop our ideas, rather than just have to fall into whatever happens to be there, all individually hoping that somehow the system changes before we are in it ourselves. It's heartbreaking to hear all these stories, and not be able to help.
10
@B. Rothman Agree. I'd like to hear in detail how other countries are dealing with this problem, and this reality.
4
We have no problem putting down our pets, whom we love and care for like family. Why isn’t it an option for humans? It’s certainly more humane than watching a loved one deteriorate. Who in their right mind would want to live with Alzheimer’s? We need to change the laws.
294
Whoa! I am amazed that so many people recommend this post. "Putting down our pets?" "Who in their right mind..." Some people would choose to live with Alzheimer's. I agree totally that laws need to change to allow us to make decisions about our future health care, including the ability to request medical aid in dying. However, let's not expect that others would want to be "put down" and let's not take this decision out of the hands of the person who suffers the dementia. That is why we all need to make our wishes known ahead of time. Now I think I will stop reading everyone's comments.
20
@JM : lets see….why can't you put your own mother down like an old dog?
I guess because YOUR MOTHER IS A HUMAN BEING WITH CERTAIN INALIENABLE RIGHTS.
So you can't murder her for your convenience.
Sorry.
@Anne: what you said. And it scares me too -- how fast people went from "Assisted Suicide WITH CONSENT" to "let's kill all pesky seniors with dementia, without their consent".
This is why I have deep reservations about Assisted Suicide -- it is a slippery slope.
@JM
Bravo
It’s for situations like this that I believe we should bring back communes. Early Americans were familiar with group-care. Native Americans were, too.
18
Spare some good thoughts for all the women taking care of husbands and relatives with dementia by themselves. They are legion.
My mother had dementia and lived in Canada. The nursing home did not allow long-distance phone calls so unless I was able to catch the nursing supervisor (the only one whose phone received long-distance calls), who was not in her office much because of her many meetings, I was unable to get any information about her condition. I never knew what I was going to face when I went to visit her.
Despite that, she was cared for very well. Unlike nursing homes in this country where people are essentially warehoused and waiting to die, her compulsive folding behavior was harnessed to fold the laundry. And she was allowed to wander all over the facility as she pleased. (They also had a cat living on the floor with the high-functioning residents. He rode the elevator down and someone let him out to do his business, and then someone else let him back in. Imagine that happening in an American nursing home!)
Many years after her death, I still have a bad case of PTSD whenever I have to get on a plane at Logan. My brain knows I'm not going to see my mother but my body doesn't.
78
@Judith People who haven't been through caring for someone with dementia don't understand how hard it is. Commercials for care centers show happy mothers and daughters. They don't show the mother screaming at hallucinations or accusing daughters of hiding men in the closet.
I understand your PTSD. I was at an auction and saw a special bed with a special floating mattress, just like the one my father had, and I froze up. My doctor said I was traumatized. Taking care of parents with dementia is so much harder than the darling brochures show. So many people with dementia are angry, and they take it out on their caregiver.
129
My Mom died of Alzheimer’s disease 9 years ago. One thing I want people to know is if the person( or their spouse) fought in a war the Veterans Administration has a program called Aid & Attendance, that provides payment for care for those in financial need for care. One has to apply and be accepted in the program. My Mom ended up in Memory Care Assisted Living, which is quite expensive where we live. It doesn’t pay a lot, but every bit makes a difference.
36
I have two sisters, twins, to one another about 18 months older than myself. One has already passed away, complications of Alzheimer's. The second is deep into symptoms and also institutionalized as well. Not a day goes by I don't think of them, and yes, my own fate. All I ask is a) a cure, b) an alternative that I don't need to relocate to Oregon to execute. Cancer, etc. bad as it is, is nothing by comparison.
39
@Bob Wessner
retired AMA attorney F/71
IF you leave before any symptoms emerge, you likely can qualify on family history alone. For assisted-death in Switzerland. I leave 2023, or sooner, for DIGNITAS Zurich. Find and read my Replies and Comment here for more information?
4
@Bob Wessner : once you HAVE dementia, you cannot qualify for assisted suicide -- not here, not in Oregon, not in Switzerland at Dignatas.
That's why it is NOT A SOLUTION to Alzheimers or dementia.
It maybe be your solution to terminal cancer or a similar ailment in a totally competent individual.
Nobody is going to "put down" your elderly relative with dementia. It's not legal, anywhere.
@n.c.fl: you can't game this system.
Sorry.
You cannot plan for 2023, because you never know when dementia hits --- and by the time it hits, IT IS TOO LATE.
If you get dementia, you won't be able to make arrangements at Dignitas or anyplace else. You won't even be able to order a cup of coffee at McDonalds.
And it's not JUST dementia. Other diseases like Parkinson's or a stroke might render you helpless.
Just remember: "to make God laugh today….tell him your plans".
Agonizing. Excruciating. I really don't know how you do it. My own elder sister had a "much easier time" - she didn't wander, she didn't try to do any dangerous things. She kind of "knew" to cut back on driving etc. Yet - I still cry for her. Her fear - especially thinking of the extended time before we really knew how much she had lost, and "compensated" for it to hide it as she was a very independent person. I think sometimes now, two years after her death, of what it felt like for her. At one point I got a call in the evening, when her daily care aide left, and knew immediately she couldn't be alone that night. I managed to get someone right over. But it was like an unfathomable darkness enclosing her which had no shape or boundary. In her, too, was a person who loved and wanted to be normal but couldn't function so satisfy her own need for occupation. I had better stop as this is not an article. And others have written about the dreadful costs. It is a terrible, dreadful dreadful disease. And, last, don't anybody argue with me about our [lack of] insurance system for which we pay so much. It's worse than useless. It's insulting and demeaning and adds to the cruelty.
169
You have my deepest sympathies. I moved close to my parents when my father became afflicted so I could help my mother. He always wore a red baseball cap when he went out so the police helicopter officers could find him when he wandered. We had to put him in a protected and locked down facility for his own protection. I went through this with them until my father died of complication of dementia. Immediately following his death, my mother got dementia. Fortunately she was not a walker and was able to remain at home with a companion. She also died from complications of it. My sister soon followed with this devastating disease. She was almost 16 months older than me. Since I now live in Mexico, I was able to bring her here to a wonderful (affordable) nursing home. Here, older people are revered and given wonderful care. Her care giver cried in my arms when my sister died at the age of 72 and 2 days. Last week my aunt died and she also had the disease. It is criminal that the health system in the US gives so little help to people who have dementia and their families. We were fortunate that we were able to help my family get the care they needed. Others are not so fortunate. This disease devastates families both emotionally and financially. Our population is aging. This needs to be a very high priority. You can bet that I am looking over my shoulder with my family history.
108
@ExPatMX I'm glad you mentioned that your sister got wonderful care in Mexico. I was eating lunch with my dad at his nursing home (the only nursing home in town) when the aide told me she'd rather be taken in a field and shot than sent to a nursing home. And this was from someone who worked there!
38
@ExPatMX I completely agree. I live in the same area and am grateful that I am not prey to the callous US healthcare system.
4
In my opinion, assisted suicide is both a merciful and logical solution to Alzheimer's. It's a tragedy that it's not an available option.
168
@bnyc
The reality is far more complex. My mother made her wishes known in directives and face to face. It is not possible to simply enact a euthanasia wish on behalf of someone who can not communicate, in the way that it is for someone who is competent - it would not be euthanasia, but state sanctioned murder. How do we know the person still even adheres to that wish when they cannot communicate? How, emotionally and practically, does one family member with medical Power of Attorney actively push for that "solution" when they are but one of several children? Often, enough of a patient remains in fragmented glimpses, that a decision to do anything other than let nature take its course, with expensive in-home care, is next to impossible. We were fortunate to have the funds to pay for care. Even if the cost were just $500,000 (assuming a 5 year lifespan in assisted living at roughly $100,000 per year), to cover the 4 million households struggling with this disease would cost $2 trillion (10% of GDP). There are only about 1 million assisted living community beds in the US, according to the CDC, and not all of those are qualified to deal with the challenges of Alzheimers patients.
Like so may other issues, our elected representative have kicked the can down the road on this one - they should all have to change a bedpan for a year and then we might get some meaningful help.
39
@bnyc
retired AMA attorney F/71
The legal term is assisted-death. It matters that we use the right terms to avoid the religious backlash inevitable with "suicide" and assistants in such acts.
I go to DIGNITAS Zurich 2023, or sooner, to skip the 14-year arc of this disease. The Swiss have long been a sanctuary for those in Europe and this country who choose to skip the suffering and bankruptcy. Fees waived for those who cannot pay them.
Lawful assisted-death includes reasonable documentation and a mental acuity essential to our final consent. To drink-the-juice. In a generous and beautiful place.
15
@check
Yes, everyone knows it's more important to have more missiles (after we got rid of some of the old ones) and stealth bombers and who knows whatelse then affordable housing or LTC. BTW if our medical costs where only 10% of GDP as in many other western industrial nations instead of nearly 20% of GDP here (we seem to be a non/post industrial western nation -- is that the problem?) the cost issue no longer is there. -- you know what I mean. Priorities.
12
we are all going to be living and taking care of people who are in the early or later stages of dementia. It is not a easy disease and right now we have no hope. Every drug has failed testing and their is no support group that has infrastructure to work with your loved one for an hour to take the emotional responsibilities off your shoulder for you to just go for a cup of coffee.
I fear that dementia will be another medical cause that never gets resolved because there is so much money to be made off of the people who are suffering from dementia. Dementia is going to be like cancer, nothing ever works and everyone is suffering constantly. Once the patient passes we are all life suffering. of all the memories we could never live with them again.
24
The brain seems to know that there is a hierarchy of its functions that range from nice-to-have (memories) to need-to-have (breathing, heartbeat) and the disease travels that route to the end. It's as if the brain chooses which functions need the most protection and saves them for last. What a wondrous organ it is.
18
@RonRich
That's a nice way to think about it but I doubt the brain is doing that on purpose. Different neurodegenerative diseases take different functions first. Some take thinking, some memory, some movement to start with. Some leave you with something and others continue the progression until no function is left at all. It just depends on the disease.
16
@RonRich
Indeed. But many -- most -- all? -- variations of dementia and Alz ultimately affect the brain's 'memory' to breathe.
Or to swallow.
Each of those will kill 'ya.
Autonomic function at the highest, most life-prolonging ability is eventually lost.
It's all the 'in-between' -- be it 4 months, 4 years, a decade, longer -- that will emotionally and financially 'break' even the most loving and caring families
8
@RonRich
Sounds more like a cruel joke.
My dad also has dementia. Like you, I worry. We aren’t nearby, like you seem to be. What will happen when my stepmom can’t take care of him? He can’t be left alone any more. He’s forgotten how to make coffee, and he has trouble with feeding the cat. He gets lost in the grocery store, and he puts the milk and juice in the freezer because he no longer can tell the difference between the freezer and refrigerator sections. Fortunately, at this point at least, he seems cheerful and willing to be directed. What happens when he isn’t?
46
@Upstater
retired AMA attorney F/71
What happens when fear displaces cheery?
Find and read my replies and comments here for suggestions learned from my two rounds of caregiver duties in my family.
5
At 81 I am at an age that I used to think would make me more hesitant to recommend "assisted suicide" programs. But I see that is not the case. Both for my own dignity and my families economic security I wish this nation faced the fact that many older persons actually would like the ability to chose when to die in their old age. I am living a full life now but can certainly envision a time when I would chose to take advantage of such a program,. I know it's not a choice for everyone but it is a choice that should be left to the individual.
595
@richard
For reasons that are, alas, understandable, persons with dementia are not well-served by current laws governing physician-assisted suicide in states where it is legal.
Why? Because only a person with full, documentable mental faculties is allowed to opt in, and typically only within six months of expected death. That means people with various dementia diagnoses will never be able to access death-hastening medication — by the time they need it, they no longer have capacity to legally request it.
I fully support physician-aid-in-dying laws. Somehow, they should be crafted to allow for dementia.
56
@richard : that only works for elderly seniors with health problems who are COMPETENT.
You cannot have euthanasia for dementia patients, as they cannot GIVE CONSENT.
It is not a solution to the DEMENTIA PROBLEM at all.
9
Beautiful piece. We have to fix this. My family went through 1.5 million over twelve years. But you can't care for them yourself. You just can't do it after a point.
129
As I read this I felt the guilt and frustration, probably part of my own, that afflicts families who just can not do enough for our beloved, suffering family members as they age. Our family is in many ways fortunate as my 95 year old mom is in a good nursing facility, paid for with her dwindling soon to be exhausted savings. But when she sees us she begs to come home with us, really an impossibility now she needs so much care. But still a lingering thought returns, Are we doing enough she has given so much and here we are with our own age closing in. How can life be more valuable in the face of these blunt changes that can not be fought but only accepted.
33
@just Robert
I feel for you, I really do. This is very much our situation too. My mother is 94 and in a good place, but also begging to come back home with us. It would be impossible- I'd die before her trying to meet her needs, and I couldn't anyway, so all her money will go to the home and there is no way to change that. It would cost the same to have 24 hour care here. It's very painful to not be able to care for her here. It is so sad. I wish that we all had more acceptance of our aging process so the nursing home was part of our plan, and was better set up for a good end of life. No stigma, just natural.
Be well and know you are not alone.
8
@LD Thank you for your kind remarks. I suppose it is part the human condition old age and decline, but why our society seeing the problem can not deal with it really sad for all of us.
1
I've read many of the comments here and no one has mentioned long term care insurance. It surely would pay for the care of this man, but I assume the parents don't have it.
If you are young, for heaven's sake nag your parents to get long term care insurance while they still can. Explain that you can't be financially or physically responsible for their care if the time comes they can no longer care for themselves.
In this instance, it might be worth paying a generatrices expert for some advice on the proper direction. Medicaid is a program funded by the federal government but administered by the individual 50 states. How and what it covers varies considerably based on the state. A move to a nearby state might make an enormous difference.
18
@India LTC insurance pays MAYBE $125 a day of the nursing home bill, at most, The daily cost at a skilled facility might be 500 or 600/day. LTC insurance is very expensive. It mitigates the cost, but is not a safety net.
69
@India
Long term care insurance actually does not cover as much as you apparently believe it will. That depends upon multiple factors, including when you purchase said insurance, what the life expectancy might be , what current health issues might be pertinent - as well as prognostication as to whether and when the policy will be used. Moreover, your chosen facility may not be amenable to your particular policy.
51
@India
Maybe you have good intentions with making that statement about long term care insurance. Have you read the small print. Have you seen some of these facilities.
The Question is how can we live in a society that cares so little about the quality and dignity of life. It is all about the money. Don't move to another state move to a country where people are important no matter there age.
Greedy America and there is no way to explain the madness when it comes to health care.
Europe is our answer if we truly love our families.
59
The government in most states will not allow my loved ones to assist me to end my life, even though that is my wish if I have dementia.
When long term skilled care is then required, which in New York can be $17,000 a month, the government then requires me to pay this exorbitant amount to continue a life that is devoid of all quality and exceedingly painful for my loved ones to witness.
169
@Janet : there is a lot of confusion on this issue.
You can always commit suicide, if you are capable to do so on your own. No power on earth could ever stop you.
In some states, you can now get Physician Assisted Suicide, if you are terminally ill or in intractable pain.
HOWEVER…even in those states (or other countries, like Canada or Switzerland)…you MUST BE COMPETENT to do this.
That means, nobody with dementia could ever qualify. Dementia patients are not competent to ask to be killed.
Your spouse or adult children cannot ask FOR YOU, as they may have a profit motive and just want your inheritance.
You cannot "sign this in advance", since a part of CONSENT is that you can withdraw it at any time, even the last second. A dementia patient can't do that, they can't consent to anything nor withdraw consent.
The only way would be to kill yourself BEFORE dementia sets in or at the moment of diagnosis. Few people can or will do this.
6
This fortunate senior had 9 loving family members to help care for him (leaving aside the Medicaid issues for a moment).
Current demographic trends show that many people will reach old age without children. Older women will care for their partners and spouses, and then outlive them, and then have no one to care for them.
What's going to become of that group?
302
@S I wonder that, too, as that will be me in a few decades-or sooner.
20
@S
Stay close to any nieces, nephews and/or cousins!
@S
We'll starve to death homeless on the streets or in our cars. No one cares at about elderly women except their family.
6
We could stop overburdening the health care system by not prolonging their lives - just let the disease progress and keep them as comfortable as possible until they die. Stop with the blood pressure, diabetes, and other medications; a quicker death would be more dignified than being bedridden for months or years unable to to toilet oneself.
162
@Fatema Karim I'm not sure what experience you have with dementia / Alzheimer's, but I can speak from my own as a caregiver. My mother recently died from Alzheimer's. She was a lovely woman - a nurse, a wife, a mother, a grandmother - not a "burden on the health care system." She wasn't on the medications you mentioned, but if she had needed them, she should have received them. People with dementia feel pain and discomfort and deserve proper care, just as you or I do. Someone who is already suffering, and may be unable to communicate their pain, should not be forced to suffer even more.
23
@Fatema Karim
Unfortunately, some dementias can take a decade or more before the person dies of complications. For those of us who choose it (and I do) assisted suicide is a good option before we bankrupt, both financially and emotionally, the ones we love.
7
@Fatema Karim : when I took over care for my 91 year old aunt with dementia (in 2012)….she was on FOURTEEN different medications.
Every time she'd ever been in the hospital or treated by any doctor….she got meds, and they were renewed with no consideration for whether she still needed them.
For example: she'd gone to the doctor with a case of diarrhea. He gave her prescription anti-diarrheal meds (vs. over the counter). This constipated her badly. So another doctor at the hospital gave her stool softeners. This gave her more diarrhea. So she was on meds both to control diarrhea AND constipation -- at the same time! for years on end!
She was on allergy pills, even though I had her tested for allergies and it turned out she had none. She was on BP meds, that caused her to fall…from dizziness…but her "high bp" was a whopping 135/70….at age 91.
I took her off ALL medications, as she did not need most of them, and I felt there was no good in prolonging life in a 91 year old with advancing dementia anyways. But the NURSING HOME fought me tooth and nail over this -- demanding I get a guardianship order from court! which would have cost me $2000! -- until I threatened to pull her out and put her in another facility. Then they caved.
Nursing homes make a very substantial profit on "mediation management" so they want every resident heavily medicated.
10
I lived with a grandmother and mother with Alzheimer's. I understand everything shared here. If such sharing helps any aspect of the personal, social and financial issues that come with the disease, good. Because otherwise the feeling I have of a confusion of "opinion" with another category of self-exposure that seems to have taken residence here will keep me from visiting
4
The opinion is about the inhumane consequences of the New Jersey health insurance policy choices.
It defies reason that because these employers employ so many Americans- mostly and claim experts, coding wizards, and bureaucratic obstacle creators - we act as if they are economic engines. They are engines of inefficiency, paperwork and poor health outcomes.
A public health insurance system will need to employ a lot of people too. If the incentives it would respond to - of better health outcomes and efficient service work as hoped, (not to mention the savings and release of burden for large employers) the result should be a release of economic burden - especially of time and pointless non medical justification/ rules / appeals - and better economic as well as physical health for many Americans.
12
This is a heartbreaking story and so many people are in the midst of something just like this.
There is no easy answer. Healthcare is not ready for this because there is no money in it.
As a nurse for 46 years, I have seen an uptick in all types of dementia with devastating consequences to patients and caregivers. Each state is a little different. In NH, Medicaid patients are eligible for a program that is called Home and Community Based Care which provides help at home that does not have to be “skilled”. The “string of private companies” that manage these programs vary depending on how much money they want to make. This is why privatizing does not work.
As I experienced it myself with both parents, the gaps in care are often filled in by family.
Please hang in there. Plan for the worst and hope for the best. Everyday there are no bad things is a victory.
My folks have been gone for a few years. In my dreams they are themselves again.
45
@CMG52
"Everyday there are no bad things is a victory."
Exactly so. Whether it is Alz. or anything ... the status quo, where nothing worse occurs, is absolutely a victory.
I like your dreams very much. So reassuring.
I hope my survivors recall and dream of me as I used to be ...
2
"There are nine of us — one wife, three adult children and their spouses, two grandchildren — and just one of him. And still, we scramble".
My heart goes out to you as my family know this path all too well (and there were roughly 9 or 10 go-to daughters, relatives, friends to help with my mother). But this isn't about me.
I strongly encourage EVERY affected family member/caregiver read this book (road map really) that is widely available; The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss
It is invaluable during a hugely challenging time that you are in the grip of. I'll be keeping you and your family in my thoughts. Your father sounds like a lovely man.
36
such a heartbreaking and loving tale you tell - which TOO many experience as well.
something will have to give....
14
This is so representative of a very common experience. The author expresses it beautifully and sorrowfully.
18
My wife has advanced Alzheimers and is now in a nursing home. I still need to go at least a couple of hours per day to help with her care (despite paying full cost.) The particulars differ from this article, but the article's title is well chosen.
I recommend the book by Tia Powel, "Dementia Reimagined" for a general overview and the "36 Hour Day" if you are just starting down this difficult journey. Six years ago it helped me realize you can't reason with a demented brain.
85
@Keith
Also recommended reading, 'My Two Elaines,' by a former Lt. Gov. of Wisconsin (from decades ago) who is now an Alz. and caregiver advocate due to his wife's lengthy time with it.
His key line: 'You can't argue with Alzheimer's.'
1
This is heartbreaking. I don't know what to say, nothing I can add to the thousands of other voices who've already discussed this topic and who are surely writing in to the NYT right now.
This could happen to any of us. As Ms. Interlandi writes, "terrified, and bone-tired, and filled with love."
And all the while, profit drives our so-called health so-called care industry.
We live in a barbaric society.
441
@Lisa Simeone Don't worry. Remember, it'll be great again...
7
@Lisa Simeone - worth repeating "We live in a barbaric society"
3
So sad, so frightening, so common. This state of affairs should have all Baby Boomers slightly panicked at their own coming demise. We like to think we'll stay hearty and whole until we suddenly drop dead at ninety... but that gift is for the very lucky few.
75
@Betsey here are the current statistics: (10 percent) age 65 and older has Alzheimer's disease. About one-third of people age 85 and older (32 percent) have Alzheimer's disease.
Us boomers panicking won't help. We are all going to die in the end, and some will die with their mind riddled with disease. There is not much you can do about that though except do your best to live a healthy life - knowing that you may develop it anyway.
6
@Mary We are living longer, and the prospect of 1/3 of boomers having some form of dementia is, if not something for us to panic about, is indeed for the next generation, as they'll have to deal with us. Panic is the alarm bell that's a precursor to action, I hope!
1
This story is what the typical Republican like to see more of. If they were moral minded people they would have worked with us Dems and given us affordable health care. We need to run this experience the family had a lot this 2020 and just maybe we will get some divine intervention from above that will mean a Democratic president so we can all have affordable health care and housing.
88
The Democrats are no better at making daily life affordable; perhaps much worse. There was no affordable care for my mother in this blue state, and she had to pay her outrageously high school taxes until she died, it didn't stop at 65. Then they came after what was left of her savings after she died, and we paid high inheritance and estate taxes on her teardown house, $200,000 in savings, and not enough dividends to pay the property taxes. After paying taxes and health care in NJ, I have a little more than half my income left to live on, and that isn't much. If my money subsidized the poor, great, but you have seen all the homeless people in blue states, so obviously my high taxes aren't helping them.
7
@Stephanie Wood
The GOP support coal pollution which we need to be more concerned about . The Dems are for clean air and water. Your party the GOP cut everything to make more nursing home residents end up in the streets. Give me the Dems any day. What is wrong is the billionaires like Trump and corporations and churches not paying there taxes the whole last century. If they had we could have had affordable health care for everyone and housing. Give me the the Dems in charge any day.
4
@D.j.j.k. : the comments politicizing this are pathetic.
Obamacare did not address nursing home issues AT ALL.
There is NO plan I have ever seen from Democrats to pay for long term nursing home care -- in part, because the costs are so staggering -- it would be hundreds of billions of dollars, perhaps trillions. And this ON TOP OF any kind of M4A.
1
We can multiply the pain captured in this excellent piece X 5 million. Count two for my parents.
Such a sad state of affairs. We need to find a cure.
88
Until then we need care that people can afford. Safe and reliable and not just for Medicaid but also Medicare. Somehow.
75
Don’t expect the GOP or their supporters to agree with you, or address the problem in any sensible or compassionate way.
The former political class isn’t likely to care about the issue because they have the money to deal with the problem with a family member on their own. Quite possibly true, it may turn out, for Trump family.
The latter don’t have those resources, but they are so hobbled by hate of minorities, LGBTQ people, and progressive policies that they are likely to be victims of the distressing scenarios depicted in the article. A self-inflicted wound for such GOP supporters.
12
@Brian Or we need to find the causes /prevention.
Yes there are skilled nursing facilities that accept medicaid, though the quality if poor, but medicare does not pay for nursing homes unless skilled services are ordered by the MD are necessary and this is time limited. After that it's private funds. If you own a home you will pay full price until you no longer have it.
35
@Ellen F. Dobson Most Skilled Nursing facilities will not accept people at the "low end of need" as described in the article.
Yes, one's home is viewed as savings to draw down upon to pay for one's care towards the end of life.
23
@Ellen F. Dobson : there are definitely nursing homes that take Medicaid.
They are the worst, third rate facilities and they put patients in rooms with 2-3 roommates.
The quality of the food and care are abysmal -- oversight is spotty at best -- and staffing levels are low compared to "private pay" facilities.
Typically, these nursing homes are either in remote rural areas -- or inner city slums.
I toured many Assisted Living facilities for my aunt, and finance are always discussed. My aunt had SOME savings, but no house and no vast wealth to draw from -- so the facilities always let me know CLEARLY that they would kick out any patient who ran out of money. (I am not kidding.) They explained that at that point….I would have to move my aunt to a Medicaid facility.
God was merciful to my aunt, because she passed away before her funds were 100% depleted. Not everyone is this lucky.
5
This is a heartbreaking story. Unfortunately, it's a common story. I took care of both of my parents by myself for years, only to have my sister steal their entire life savings when she finally came and gave me a break of a couple of months. By the time my dad was too ill for me to care for him alone, he made too much in retirement to qualify for Medicaid but not enough to cover a nursing home. There was no money in his savings because my sister took it all and left the state. I made up the difference to cover the nursing home.
How did I end up? Sixty-five with health issues and no savings of my own. The best I can say is that it left me so broke I now qualify for Medicaid, but that's not saying much.
What happens after a person spends years taking care of their parents? Depends on what state they live in. Depends on how honest and helpful other relatives are. Taking care of parents ends up being a gamble, with some winning and some losing.
215
So many of us are dealing with a parent or in some cases both parents who are struggling with some form of dementia or Alzheimer's. The statistics say more and more people will experience some form of dementia or Alzheimer's. The cost to the family is both outrageously and ridiculously high. For those who could afford private care whether it is aids around the clock or a facility like The Bristol (where my mom is getting great care) is a gift to the family and to the patient. However, private care is expensive and often the life savings of the patient is depleted. It would seem logical that Medicare/Medicaid would assist dementia and Alzheimer patients across the board - their emergency visits alone to the hospital is costing the insurance companies and the government money. Why not invest in allocating funds for these patients to get the care they need so as to avoid the medical care they need caused by accidents at home as well as the medical toll it takes on their families (in many cases, seniors taking care of seniors). Just hoping for another way to reinvest in the most vulnerable and in need in our country.
49
Is your Dad a veteran? Mine is and he has Lewy Body Dementia and entered one of their skilled nursing facilities last month. He can do nothing for himself and cannot walk so he qualified easily. Its a great place. I know at my dad's home they have a day care facility too. You may want to look into what the local VA can offer you. Also, if you haven't already find the local Alzheimer's Association. They may offer some wisdom and resources.
33
When my very excellent father was dealt the Alzheimer’s and could no longer stay at home and had to go into a nursing home, my mother and I took turns visiting him, she one day, me the next, where we shaved him, toileted him, brushed his teeth,
cut his nails, saw to it that he was eating, had on the right clothes and comforted him when he grew agitated.
The nursing home -- an expensive one --talked a good game, but frequently fell down on the job, so for the next two years, we took on the job that we always knew and expected would soon become ours.
People frequently think of nursing homes and health care for the
elderly as largely matters of money, but in actuality money is only the beginning of the troubles.
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@A. Stanton ...amen. people seem to think that the care you described is medical. It isn't. It is love, and it cannot be outsourced.
Father ...8 years of vascular. One year after he died, mother diagnosed with Alzheimer's. I was the primary care giver and money manager. Nobody is going to do this for you. And yes it is disheartening to watch so many people abuse their bodies, require very expensive "episodic" care costing 6 figures, but chronic conditions need to hit that high annual deductible. Nothing fair about our health insurance system, but taking care of family is the essence of family values. You would think the self righteous would be interested in making that easier. I didn't count on these phonies, and you will be disappointed if you do.
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@A. Stanton $7,000 per month not including medication and all kinds of extras tacked on that seemed to come out of nowhere for husband's care. This was supposed to be a good memory care center. Pretty facility but completely worthless staff. No RN in the building, despite the materials from the nursing home. Floor staff that sat in the kitchen on their cell phones. Unless I came every day to feed and care for him, he may not have eaten all day. Why did I use it for my husband? No one else could take him.
When he finally got into Veterans I made sure to tell anyone who asked to NEVER put anyone in this facility. And, by the way, I will have to work for the rest of my life. My savings were depleted like so many others commenting. I keep wondering who will take care of me. No family even close in geography or capability.
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@A. Stanton Agreed. Money cannot buy really good care in a nursing home. My mother lived in our home for 7 years, but we had a truly saintly Fijian caregiver. We really did not pay him enough, given what he gave us.
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My wife was diagnosed with early onset Alzheimer’s at 54, she’s now 60. I placed her in a group home 1 year ago and fully expect to spend our entire retirement funds and savings on her care. This nightmare is certainly not how we planned to spend our retirement. When she could still talk she asked me to help her die. Unfortunately, dementia does qualify for Death with Dignity. Sadly, at this point in time, the most I can hope for is for me to pass away while I still have a life insurance policy. American health care at its best!
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@Unarmed : I am so very sorry about your wife.
Dementia is awful enough in someone who is 80-90 years old….but to get it at 54 is brutally unfair.
The wonderful (but very painful) film "Still Alice" is the best depiction of this I have ever seen, though maybe too emotional for you to view at this time. (I recommend it highly to those reading here.)
I think you have a typo here, as dementia does NOT quality for Assisted Suicide, as the patient does not have the ability to "consent" to any procedure.
That makes blithe talk from some folks here -- "oh, they will choose suicide over dementia!" -- silly. By the time you HAVE dementia….you lack the capacity to arrange anything like Assisted Suicide or a trip to Switzerland for Dignitas.
The reality is that Obamacare did not address either long term dementia care OR general long term nursing home care -- in any way.
This is an area in which BOTH PARTIES have utterly failed us.
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@Unarmed Possible typo? Does Death with Dignity really allow dementia patients? I (maybe erroneously) thought that one had to be in a good "cognitive state" to use this method legally. ?? Thanks.
When I read this well-written articles, I thought of my mother-in-law's descent from a talented artist and teacher to someone who could not even sign her name. Fortunately they had a good insurance policy in place..
Then I think of the political noise in this country that despise our social contracts with each other and know that 40% or so of the people suffering dementia really never wanted a system that would have spared their families the type of pain (and financial suffering) that most dementia patients' families go through. In other words, they decried the nanny state (when they now need an adult nanny). Socialism? Bah, Humbug!
So a significant minority of our country doesn't want (want to pay for) a system that will look to their care in their older age, or even at a younger age if they are struck with a disabling disease. They and their families hold the rest of us captive because they refuse to think things through. In their willful ignorance, roll the dice for themselves as well as the rest of us. Example? I have a friend with a 40 year old son with aggressive MS, now with 24-hour aides, dependent on Medicaid to pay for them, but still voting for Republicans who are trying to curtail Medicaid. Sad.
Our legislators really need to get on a plane and take a look at Denmark and the wonderful treatment that their people get from birth to death. A life without fear of the financial consequences of illness. No wonder they rank in the top 10 happiest countries.
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@Bill Cullen, Author
retired AMA attorney F/71
Any adult who still has his or her mental faculties, including this young man with advanced MS, can get assisted-death easily and quickly in Switzerland. It is a whole lot easier to raise the money to fly a person + caregiver to Switzerland than it is to navigate our intractable health insurance blockades.
DIGNITAS in Zurich is my destination. Set for 2023 or sooner to avoid losing mental status to almost certain Alzheimer's (father and his mother). I qualify now on pain from four car wrecks that each destroyed a different part of my spine. Help this mother get to her son's release and her relief? Soon?
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A former co-worker is a both a Republican and president of an anti-tax group in my wealthy county. I asked him one time why he was against taxes and he said he didn’t want the government wasting his money. I pointed out that his severely disabled son directly benefitted from those programs. I told him that his principled stance on individual responsibility was admirable, but he and his wife both have high paying jobs and that there weren’t many other couples who could shoulder the responsibility as well as he could. He said the programs to benefit his son are not the ones he objects to because nobody could be expected to take care of another person with needs as large as his son’s. He said his son is a public responsibility and he legally disowned him in order to get him on public assistance.
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@Been There
Sounds like the baseball player how made a stink about teaching his kids to shoot guns in case the socialist Bernie Sanders was elected.
The player plays(ed) in stadiums and made obscene money for what he did. Stadiums financed by taxpayers. Socialism at it’s best, or worst, all depending on how you look at it.
Truth is conservatives are just selfish hypocrites. They choose to ignore how they benefit from government or excuse it with “all the taxes they pay”.
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It. just. shouldn't. be. this. way. What have we let politicians, on both sides of the aisle, do to us? So many times ordinary American families have been sold down the river by profiteers. If this is how capitalism works, we need a better way.
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@Cleota
It is not both sides of the aisle. Democrats care about your healthcare; Republicans only care about their pockets. Imagine what is possible with a Democratic President and a Democratic Congress.
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@Nita Alexander : we had a Democratic President in 2009…BOTH houses of Congress, with veto proof majorities.
We got lousy worthless Obamacare with HIGH DEDUCTIBLES!
Furthermore…Obamacare did not address the problem of long-term nursing home care for the elderly OR dementia care.
NOT ONE BIT.
So frankly, nobody on either side of the aisle has even addressed this.
Nobody.
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Can the Democrats make short videos clips of people of different backgrounds including those in red states and start making a case of either expansion of ACA or single payer Medicaid for all? As long as people keep voting against their interest and more focused on cultural and identity politics we are not going to make any progress
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@Dharma : the ACA….Medicare…do not have any mechanism to pay for long term nursing home costs, let alone Assisted Living -- let alone DEMENTIA CARE units in Assisted Living.
Nothing, zero, zip. Obamacare did not even address this.
Medicaid is the payer of last resort, and in fact….the largest line item in the Federal Budget, far exceeding even the cost of the bloated US military.
And the biggest expense of Medicaid each year? Paying for nursing home costs for elderly patents who have exhausted all their financial resources.
We are talking about hundreds of billions of dollars each year. And that's at the present, very low levels of care and reimbursements.
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If you have not already, engage your local Area Agency for Aging which may have in-home support programs designed to keep people out of nursing home care, as Michigan does. Aloso look into PACE (Program of All-Inclusive Care for the Elderly). There are 21 PACE programs in NJ. If he has Medicare and Medicaid, and dementia, he could well be eligible. In Michigan our local PACE program provided daily day center visits with on-site interdisciplinary care and eventually assisted living or nursing home care when our family member could not be cared for in her home. Thirdly, remember you have the right of appeal all the way up to CMS if you have not exhausted that avenue. Some attorneys specialize in that kind of expert help if you are not savvy or are just too spent, which I completely understand and empathize. My very best wishes.
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@Everbody's Auntie A great program! PACE is in 36 states. There are enrollment requirements, so it is important to understand them thoroughly. I wish this program had been available when my father needed it.
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@Everbody's Auntie
A great program! PACE is in 36 states. There are enrollment requirements, so it is important to understand them thoroughly, especially as your loved one's needs change (and they will). And it is not available in every locale. I wish this program had been available when my father (and I) needed it.
Another comment: Your suggestions also indirectly highlight the burden put on family members to be "savvy" and to navigate our byzantine health care "system," usually under stress and often facing an immediate crisis of care.
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@Everbody's Auntie From a retired Geriatrician (who worked at a PACE): if you do not qualify for a nursing home, you can't get into PACE. The program was designed for the government to save money by keeping people at home, cheaper, rather than them going into a nursing home.
The big gap is in Assisted Living. Unable to do a few things, but not "enough" for SNF? You are looking, at 7-8 thousand a month for a "memory" unit--no government assistance.
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And the insurance executives are making millions of dollars a year while their minions refuse medical care to their customers. HOW is this right?
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@Tom F. They refuse medical care only when that care isn't covered by the policy that their customer purchased. I worked in insurance for over 30 years. A big part of my work involved getting people to believe that the worst could happen to them and they had to be prepared. People want to purchase the least expensive coverage and then are angry when there isn't coverage for their situation. Until our government steps in, everyone needs to prepare for the worst - either with insurance or with their own private savings.
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@Linda Bell - Insurance is not medical care. These companies force people to choose between buying health “insurance” or paying for food and shelter. Insurance profiteers need to stick to home and auto insurance and stop lobbying against healthcare reforms.
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@Lynk
Amen. People don’t refuse to buy insurance because they are neglectful. Some literally can’t afford hundreds a month for insurance which they can’t count on to pay out when they need it.
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I have seen this scenario play our 3 times in my extended family and the only reason it did not bring about financial ruin was dumb luck and informed gaming of estate planning, long term care insurance acquisition and Medicaid. On top of this is the incredible stress it puts on family members particularly elderly spouses and caregiver children...usually daughters. My own mother was robbed by fate of what should have been 12 last years with the love of her life when my otherwise perfectly healthy father had dementia.
Sorry to sound selfish but, to be honest, dementia is the only thing in the world that truly frightens me. Terrorism, mass shootings, crime, climate change, nuclear war...they all pale by comparison. People hate to think of bad things happening and so they always underestimate the likelihood that they will happen. Not so for me and dementia. It is REAL and I see it happening nearly everywhere. Few families at large manage to escape.
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@Woodson Dart Agreed. It is truly my only fear.
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@Woodson Dart : I'd wish you'd talked more about the "gaming of the system" -- that only fairly wealthy people can do -- by putting assets away in trusts, so that TAXPAYERS are on the hook to pay for Medicaid -- while the patient and their family get to keep millions of dollars in cash, real estate, stock, etc.
That is a very important issue, and part of why we have no system to serve the vast majority of people -- who lack assets or lawyers or fancy trusts.
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@Woodson Dart
As s 9/11 family member still grappling every day ... terrorism is terrifying. Trust me on this.
I also understand your deep fear about Alz. I feel the same. I'll take myself out first, if at all possible.
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What were your father’s wishes before he was too far gone?
Is this what he would have wanted?
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@Brad : unfortunately, very few people have plan. Nobody ever thinks it will be THEM who has dementia.
Yet it affects fully 50% of those over 85.
Even if your "wishes"-- as many in these forums express -- is to die rather than end up so disabled and in such demeaning circumstances….there is no legal mechanism to simply "kill" a dementia patient.
Even states with Assisted Suicide laws, it does not apply to those who cannot LEGALLY give CONSENT. Dementia patients cannot consent to ANYTHING.
The problem is massive and will get exponentially worse as the baby boomers age…followed by GenX.
And the cost is unimaginable. We are talking TRILLIONS of dollars.
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@Brad
Probably not, but what choices are you suggesting?
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This article moved me intensely, having recently ended a years-long journey through my mother's battle with Alzheimers. Four months after my mom's death, I remain stupefied by the US's lack of support systems and networks for families whose loved ones are affected by dementia. The loneliness, fear and anger that set in when caring for a demented family member empty the soul and exhaust the mind and body. Ms Interlandi, thank you. I'm certain legions of caregivers read your words today with recognition... and gratitude.
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This is petrifying. I hope that if I get to this point, someone slips me something in my dinner.
I cannot imagine the strain to any family going through similar times and heartache. Even if there's enough money to keep me going, this is not the quality of life I'd like to maintain.
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Imagine this with a long term marriage partner being the one to give the care, the immense sadness and if aged the hardness is all the tasks. It’s cruel.
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@mainesummers
Agree!
I feel doctors, dentists and even veterinarians have the upper hand here.
They know how it can be done in a non-obvious way.
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@mainesummers right, after seeing my Mom ride Alzheimer’s all the way down, I would like someone to fix me a nice drink and spike it good if I ever get demented
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If your father is physically healthy, he might be able to go into a group home situation. I had an elderly relative whose medications cost a total of 8 dollars a month, but the Alzheimer's cost her her spot in a senior apartment complex. She lived out her days in a small group home of 8 residents. There was a caretaker (usually 2 caretakers) there at all times, and the home was licensed by the county. Because all 8 residents were physically healthy, a nurse's presence was not required. The cost was much less than an assisted living facility, but because my relative was physically healthy, it was available to her.
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@scrim1 : the problem is, in this situation…the father wanders and it sounds like he is "combative" and difficult.
Not every dementia patient is the same. I cared for my elderly aunt with dementia, and she had the type where the person is very passive and quiet. You could park her wheelchair in front of a TV all day -- she never wandered.
Wandering dementia patients MUST be in locked-down units for their own safety -- or they will wander off, run into traffic or freeze to death in winter.
A specialized, locked-down dementia unit runs about $7500-$10,000 a month, depending on what region of the country you are in (and the deepness of your pockets). For most US families, that is a bankrupting cost.
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I cared for my husband who had Parkinson's dementia. Due to his dementia, he had fallen and broken his kneecap in half. After multiple surgeries, he eventually lost his leg to MRSA. Of course, he couldn't remember that he only had one leg, so regularly stood up to try to walk, and fell and broke ribs. I had to bathe him, dress him, manage his 20 meds, catheterize him, administer injections and IVs, then change his wound vac, and later, after amputation, I wrapped his leg in the proper criss-cross fashion to prepare his stump for a prosthesis (which he could never manage to operate).
I spent a year regretting that suicide wasn't an option. When it finally began to seem like the best option, I got help and put him in a nursing home, paying out of pocket for it until his half of our assets were depleted. After that, and months of an onerous application process, he was placed on Medicaid. I was told that I made too much for Medicaid to pay the whole bill, so I took money out of my personal savings every month to pay "my share" of the nursing home bill.
Once my husband died after 6 years in a nursing home, within a month I got notice from the state that the state was placing a lien for $232,000 on my house to repay Medicaid. (I was able to negotiate to "buy out" the lien for a lesser amount, which was still tens of thousands of dollars). Note: apparently not every state has this system.
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@MegWright
Such a long haul for you! And such a failure of our community (nation, civilization, state, whatever....) to recognize that we ARE a community -- we are in this together. The loneliness and heartache of the kind of care that dignifies the person with Alzheimer's does not seem to be a concern to our community (nation, civilization, state, whatever...). How isolated we are -- tragically so, in this "First World" nation.
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@MegWright - This is heartbreaking on so many levels. Thank you for sharing your situation. We all need to beat this drum, as much as possible, in small hopes that the future will change and we'll have a safety net that actually works.
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@MegWright : I'm so sorry about your situation. Dementia and Parkinson's are very cruel diseases.
There is no really good solution that I've heard. Obamacare did NOT address any aspect of long-term nursing home care -- which was clearly what your husband needed -- and your story about being forced to pay monthly AND THEN dunned for repayment of his Medicaid costs!!! is very true and the "cherry on the sundae" of horribleness.
I'd love to see some concrete plans for reform and restructuring of the current system. But the NYT and Democratic Party have largely abandoned M4A and none of the "reforms" I've heard discussed have even touched on this subject.
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The narrative in the column hits close to home for me because my wife's memory continues to erode from Alzheimer's. She can still do some things herself but she needs help in many areas. We have been fortunate to have an aide who assists and often sees me through some of the darkest moments of the disease.
Thankfully our aide has been here immediately when I have had medical issues. I am so grateful for the aide who moves in on those occasions and takes care of my wife full time; however I shudder for the families that cannot afford an aide or aides or who get denied services because the individual with Alzheimer's is not "disabled" enough.
It is another mark of demerit on our US government that a program is not devised to help families with their loved ones who have diseases like Alzheimer's while we help those who have lots of money, individuals and corporations, scam the tax system to pay minimal Federal and State taxes. And...we can point the fingers at our Presidents and law makers who succumb to lobbyists dollars. Their needs take precedence over those who really need help with home and institution care rather than with massive estates and yachts.
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@JohnR
Well stated! The wealth gap is appalling!
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My 87 year old father has Alzheimer’s and still lives at home with my mother. On thursdays someone is there so my mother can go out, in the evening students come to cook for them, and someone to help them wash. All of this is done on contracts and paid by the insurance. They are glad to help out as my father living at home is cheaper for them than having to pay for institutional care. What will lead to him having to live in a care facility will eventually be him becoming increasingly difficult, stubborn and unreasonable to my mother. What a tragedy this disease is! But when I read how you are being abandoned by the insurance system while we get everything taken care of, I realize everything could be infinitely worse.
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It’s shameful how our government treats many of the elderly and individuals with disabilities, instead of figuring out more ways to help them, laying much of the burden on oft ill equipped families.
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@Bronx Jon : the problem is COST….it's HUGE and Medicare was never designed to pay to for long term nursing home care.
A dementia unit runs roughly $7500 to $10,000 PER MONTH -- yes, this is outrageous! -- and I have no idea how it is handled in other nations with more comprehensive health care. (This would be a valuable study, but nobody has done it.)
At that cost, most people are wiped out financially in a year or two. Then they go on Medicaid welfare.
If we paid for this out of existing Medicare funds….the Medicare system as it is today, would be totally bankrupted in a year. We are talking TRILLIONS of dollars.
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I have been through this nightmare. It will take complete depletion of your father’s resources before he can access Medicaid, at which point you can likely get him into a nursing home. In the meantime, prepare for the changes for your life and that of your extended family to be overwhelming. The ordeal with my mother who had Alzheimer’s and my alcoholic father who tried to care for her took six years,a medical catastrophe, depletion of all of their funds, legal action to prevent them from bankrupting my sister and me, and then the destruction of my relationship with my sister before the end came. I have little respect for how we deal with chronic illness and death in our culture.
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@Janet Baker : you beat me to it. The author here doesn't understand how this all works (yet).
Her parents are way past the "nice Assisted Living Home down the street for $8000 a month" -- they won't take advanced dementia cases anyways. (There are legal liabilities dealing with dementia patients who wander away.)
Her dad needs a locked-down dementia facility and that's even MORE expensive (for just him).
She should consult a lawyer specializing in such things, to protect at least some assets for her mother. Otherwise, the system AS IT EXISTS says they must spend all of her dad's assets and then he will qualify for Medicaid….which wil pay, but put him in a third-rate facility in a shared room.
How long they can put that off, depends on how much money her parents have and the value of their home.
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@Janet Baker One thing that woulld help is if we all adopted a Whole Food Plant Based Diet (including no oil). Studies show it cuts the risk of vascular dementia and even Alzheimer's dementia...by a lot. Look into it. It gives you some hope of not inflicting this scourge on your loved ones.
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