The Unending Indignities of Alzheimer’s

A family navigates the disease — and its financial burdens.


Comments: 279

  1. 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.

  2. @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.

  3. @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.

  4. 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.

  5. @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.

  6. 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.

  7. 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.

  8. @JohnR Well stated! The wealth gap is appalling!

  9. 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.

  10. @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.

  11. @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.

  12. @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.

  13. 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.

  14. @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.

  15. 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.

  16. 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.

  17. @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.

  18. @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

  19. 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.

  20. What were your father’s wishes before he was too far gone? Is this what he would have wanted?

  21. @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.

  22. @Brad Probably not, but what choices are you suggesting?

  23. 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.

  24. @Woodson Dart Agreed. It is truly my only fear.

  25. @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.

  26. @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.

  27. And the insurance executives are making millions of dollars a year while their minions refuse medical care to their customers. HOW is this right?

  28. @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.

  29. @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.

  30. @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.

  31. 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.

  32. @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.

  33. @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.

  34. @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.

  35. 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

  36. @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.

  37. 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.

  38. @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.

  39. @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.

  40. 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.

  41. @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?

  42. 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.

  43. @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”.

  44. 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!

  45. @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.

  46. @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.

  47. 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.

  48. @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.

  49. @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.

  50. @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.

  51. 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.

  52. 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.

  53. 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.

  54. 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.

  55. @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.

  56. @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.

  57. 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.

  58. Until then we need care that people can afford. Safe and reliable and not just for Medicaid but also Medicare. Somehow.

  59. 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.

  60. @Brian Or we need to find the causes /prevention.

  61. 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.

  62. 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.

  63. @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.

  64. @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.

  65. 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.

  66. @Lisa Simeone Don't worry. Remember, it'll be great again...

  67. @Lisa Simeone - worth repeating "We live in a barbaric society"

  68. 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.

  69. @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.

  70. @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!

  71. 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.

  72. @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.'

  73. This is so representative of a very common experience. The author expresses it beautifully and sorrowfully.

  74. such a heartbreaking and loving tale you tell - which TOO many experience as well. something will have to give....

  75. "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.

  76. 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.

  77. @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 ...

  78. 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

  79. 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.

  80. 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.

  81. @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.

  82. @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.

  83. @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.

  84. 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?

  85. @S I wonder that, too, as that will be me in a few decades-or sooner.

  86. @S Stay close to any nieces, nephews and/or cousins!

  87. @S We'll starve to death homeless on the streets or in our cars. No one cares at about elderly women except their family.

  88. 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.

  89. @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.

  90. 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.

  91. @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.

  92. @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.

  93. @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.

  94. 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.

  95. @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.

  96. @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.

  97. 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.

  98. 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.

  99. @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.

  100. @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.

  101. 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?

  102. @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.

  103. 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.

  104. @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.

  105. @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

  106. @RonRich Sounds more like a cruel joke.

  107. 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.

  108. 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.

  109. @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.

  110. @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.

  111. @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.

  112. 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.

  113. @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!

  114. @ExPatMX I completely agree. I live in the same area and am grateful that I am not prey to the callous US healthcare system.

  115. 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.

  116. 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.

  117. @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?

  118. @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".

  119. 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.

  120. 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.

  121. @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.

  122. 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.

  123. 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.

  124. 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.

  125. @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.

  126. @JM Bravo

  127. 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.

  128. @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?

  129. @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.

  130. @B. Rothman Agree. I'd like to hear in detail how other countries are dealing with this problem, and this reality.

  131. 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.

  132. @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?

  133. @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.

  134. @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.

  135. 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.

  136. 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?

  137. @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.

  138. @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

  139. 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.

  140. Since my mother died of it, I'd like to be part of a clinical trial, but keep seeing that I'm not qualified.

  141. 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.

  142. 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.

  143. @Joseph And Medicare is going to provide less home healthcare starting Jan 1. Google for it.

  144. @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.

  145. 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.

  146. @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.

  147. 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.

  148. 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.

  149. @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.

  150. 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.

  151. 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.

  152. @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.

  153. @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.

  154. @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.

  155. 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.

  156. @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?

  157. @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.

  158. 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.

  159. @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!

  160. @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.

  161. @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!

  162. 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.

  163. 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.

  164. @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.

  165. 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.

  166. 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?

  167. 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.

  168. 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!

  169. 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.

  170. 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.

  171. 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.

  172. 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."

  173. 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.

  174. 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.

  175. 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.

  176. 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.

  177. @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.

  178. 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.

  179. 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.

  180. @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.

  181. 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.

  182. @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.

  183. @cynicalskeptic: The author's father had a large family - 9 adults available to help - and it still wasn't enough. It's never enough.

  184. 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.

  185. 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.

  186. @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?

  187. @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.

  188. 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.

  189. 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.

  190. @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.

  191. "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.

  192. 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.

  193. 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.

  194. @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.

  195. 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!

  196. 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.

  197. 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.

  198. @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.

  199. @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.

  200. 20000 Residents? A small city. How on earth does it work?

  201. 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!

  202. @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.

  203. and yet Mission Impossible is exactly what most of us in the real world are doing.

  204. 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

  205. @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.

  206. @L. Finn-Smith I understand your need but on what basis do you think you are entitled to take someone else’s money ?

  207. Warren and Sanders are out of their skulls—or worse yet, lying like crazy—if they think the country can afford all this.

  208. 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.

  209. 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.

  210. @theconstantgardener No current state or country will euthanize you based on a living will.

  211. 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.

  212. 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.

  213. 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.

  214. @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.

  215. @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?

  216. 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.

  217. 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 .

  218. @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!

  219. @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.

  220. 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.

  221. 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.

  222. @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!

  223. 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.

  224. @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.

  225. @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.

  226. 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.

  227. @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?

  228. @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.

  229. @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.

  230. 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.

  231. @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.

  232. @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.

  233. @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.

  234. You are a good daughter. I wish your family and you all the very best. I appreciate the many comments here too.

  235. 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.

  236. 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.

  237. 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.

  238. @Robert This! Not enough people understand this. Too many people want to hold on beyond what is reasonable.

  239. @Robert: Of course it is. It's all a matter of how much tax we are willing to pay for the coverage.

  240. 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.

  241. 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.

  242. Wow - Medicaid covers in-home care?

  243. 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?

  244. 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.

  245. 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.

  246. 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.

  247. 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.

  248. @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.

  249. 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.

  250. @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.

  251. @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.

  252. @Paul in NJ that's my plan too.

  253. 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.

  254. 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.

  255. 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.

  256. 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.

  257. @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."

  258. 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'?

  259. 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.

  260. 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.

  261. 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!

  262. @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.

  263. 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.

  264. 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.

  265. Dear brave sister in parent tragedy. Such a brave heart-wrenching story. Perhaps, take heart for a moment’s respite. You’re not alone.

  266. 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.

  267. @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.

  268. 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.

  269. 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.

  270. @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.

  271. @Jp So explain why the problem doesn’t exist in New Zealand? Or the rest of the civilized world?

  272. 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.

  273. 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.

  274. @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.

  275. @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.

  276. 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.

  277. 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.

  278. 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.

  279. @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...