Living With the Parents I’m Losing to Alzheimer’s

Elizabeth Wolf and her husband live in the house she grew up in and care for her mother and father. Even with help, the days are long.

Comments: 244

  1. Who would you be? A person saving her own life.

  2. It's a hard decision to make, and it seems that not everyone agrees. But there are those of us who look at it this way: parents give up their lives for their children, and now some of us feel the need to repay that gift, and who love our parents even now, enough to give up some of our lives to take care of them -- even if it's years at a time. It's what so many societies USED to do, take care of the elderly in the home. Some call it stupidity; others of us call it love, gratitude and devotion.

  3. When societies used to take care of the elderly in their homes, people died soon after getting sick. They didn't take medicine for diabetes or for hypertension or for seizures; they died of diabetic complications or strokes or falls. There were no antibiotics or ventilators, so when old people got pneumonia they died in a matter of days.

  4. You can refuse pneumonia vaccines; and set definite limits in an advance care directive specifying no antibiotics are to be administered in a situation like this. And make sure your Health Care Proxies understand your choices - and maybe practice saying no . . There is a dilemma with growing into dementia and whether the directive will be honored -- so it is imperative that you have someone with authority ( power of attorney) to insist on not applying counterproductive medical care.

  5. I am impressed that Paula has been able to care for both parents essentially by herself. Many caregivers become exhausted by the '48 hour day' that taking care of a demented family member seems to involve.

    I found tremendous support from the Alzheimer's Association in both educating me to help support my mother and in providing support groups that helped a close friend with early onset MCI. My takeaway has been it that it is very very hard to deal with this by oneself and that it is critical to get as much support as possible before you burn out.

  6. Dan, I am the scribe but the tireless caregiver -- well, actually, the tired caregiver -- is Elizabeth Wolf.

  7. I have to admit that I may not have a popular viewpoint on this. I have heard many stories of adult children, overwhelmingly women, who have significantly rearranged their lives--often stopping their work to assist a parent with dementia--only to find themselves either exceedingly burned out, deeply in debt, or headed toward a future living on the line of poverty because they were out of the workforce far longer than anticipated. Marriages/relationships can and are often sacrificed in this process, including the parental relationship to children as the care giving consumes more and more time and attention. I also find it challenging to hear about all the medicines prescribed and procedures done to prolong life when the quality of that life is deeply questionable, and the cost prohibitively expensive--both in the present and into the future. I feel more compelled to support expansion of in-home care giving services and assisted living; memory care facilities; further training/recruitment for the professionals that provide services in these programs and facilities; education and support for individuals/families facing the devastating diagnosis of dementia of a loved one (Alzheimer's Association is an outstanding example); and increased opportunities for funding these programs and facilities. Ultimately, new models of care will need to be adopted, and are on the way (e.g The Green House Project, Eden House). There is so much hanging in the balance of getting this right.

  8. For those who have access to it, modern medicine has significantly prolonged life expectancy. Unfortunately, there are no systems to support people with those longer lives. Instead, the last few years are often a horrifying, humiliating, dispiriting devolution. And yes, women--adult daughters--bear the brunt.

  9. Your suggestions certainly make a lot of sense especially since baby boomers will increasingly be in need for them. But such services will have to employ people with kind hearts and lots of patience, and I personally am not seeing any of it anywhere. There will be people who will work there because they will need to pay their bills but it certainly won't be a good environment to say the least.

  10. Here on the island of O'ahu adult day care centers (10-12 hours weekdays) help working children provide care to their needy parents at a cost of just under $70/day. Assisted living and other 24/7 type permanent facilities are the most expensive in the U.S., $10,000-15,000/month.

  11. Advanced Alzheimer's and dementia patients are like toddlers, except they weigh 150-plus pounds, have credit cards and know how to drive.

  12. Elizabeth and her husband are saints in my book - I hope that they can see their way clear, though, to try another time to make a break to a facility for her parents. I wouldn't want my daughter to make such sacrifices for me and I wonder if, had her parents been able to have been asked, they would have felt as I do.

  13. as sad as this situation is -- I think people should think like Nancy -- I myself would rather just simply die than have my children be burdened with taking care of me if I were to be incapacitated on a long term (i.e. more than one year) basis -- the lady writing this story == if she and her husband wanted children -- they should have had them -- maybe they didn't want them in any event -- but nonetheless -- they are entitled to live their lives to the fullest -- after all -- her parents did...... I know that sounds cruel -- but this disease -- talk about cruel -- it kills not only the person afflicted with it, but everyone around them as well -- now that IS cruel ---

  14. So much more I want to know - where are Elizabeth's siblings? Aside from not having children, in what other ways has it impacted Elizabeth and Casey's marriage? Also, can't wonder if there are environmental or other factors involved that contributed to both parents coming down with Alzheimer's. Is Elizabeth having herself monitored should it be hereditary?

    Regardless, Elizabeth and Casey are an incredible daughter and son-in-law. We should all be so blessed to have a child (and spouse) so committed to a parent's well-being and happiness.

  15. Hi Tuck,

    I just wrote a note to this effect acknowledging my sadness with their absence in this piece. They are close by and intimately involved with our parents.

    Thank you so much for your words.

    Elizabeth

  16. Tuck, there is familial Alzheimer Disease (AD) that can be screened for genetically. Some risk factors outside of genetics are concussions, low level of education, diabetes, heart disease and lack of exercise to name a few. Keeping a good weight, a Mediterranean diet, moderate exercise at least three or four times a week and interestingly chronic aspirin use are a few things that have been shown to reduce the risk of AD. If my parents ever are afflicted, their care will be up to me since I am the only doctor in the family as well as the only sibling with experience in AD care. It is also specified in their living will that they not be put in a nursing home.

    Bob

  17. My father was diagnosed with dementia through Kaiser and UCSF, but they couldn't tell what type. For the sake of the grandchildren, my sisters and I paid for the brain autopsy and brain donation through the nonprofit brainsupportnetwork.org. Robin Riddle and her team helped us find the answer that my dad had Alzheimer's. His brain is now with the Mayo for research. (He was a bone marrow donor 25 years ago so we thought it fitting that he would donate a part of himself again at the end of his life). For all those families who are willing and able, I encourage you to donate your loved one's brain and help our scientists find a cure.

  18. I have been through so much of what Paula has described. Caregiving can be addictive and joyful, but it can also destroy you. My wife is in long-term care and I see her daily, but I have been encouraged, cautioned and warned to develop a life outside being with my wife. There is no getting better from dementia, only a decline into darkness. Please consider the toll this disease takes on the caregivers as well as the one afflicted. Be well.

  19. I know what you mean about needing to bring your dad home. My dad was in an acute-care hospital for six days earlier this year. Before that stay, the only type of cognitive struggles he exhibited (at age 92) were fairly minor difficulties remembering recent events, and complete non-memory of three recent TIAs. Beginning with his first night in the hospital, he didn't know where he was, or why he wasn't at home, or why he was in the hospital. He started mis-identifying family members, which he'd never done before (at least not out loud). He couldn't remember whether his parents, brother and sister, and extended family members were alive or dead. And he constantly, constantly asked us when he could go home. He seemed to think he was being punished for something.
    We got him home as soon as we could, figuring that the longer he stayed in the hospital, the quicker his cognitive skills would decline and the less likely they would return. At home, most parts of his memory improved rapidly. He is still missing some memories he had before hospitalization, and some motor abilities. Happily, he has absolutely no memory whatsoever of being in the hospital. He was so scared while he was there, even though one or more family members were there from dawn until well after dark. Your parents were probably the same, and I understand why you couldn't bear to leave them, even though having them at home requires so much from you. I wish you all the best in this difficult endeavor.

  20. Medications routinely administered in the hospital can cause this type of reaction. A good board-and-care home will not medicate residents to keep them asleep or in bed.

  21. Caring for one parent is exhausting, let alone two. You are managing a lot, and I urge you to get some help so you can continue doing this, if this is your choice. Families don't need to do this alone. At CaringKind, The Heart of Alzheimer's Caregiving, formerly the Alzheimer's Association, NYC chapter, we see a world where families are not afraid to ask for help, where we give them the information they need at the time they need it, and connect caregivers to a network of people, not just resources. So many caregivers tell us they feel less alone, and better prepared to care for their family members. And it is critical to get a break, take some respite from the endless demands of providing care. For more information visit our website at www.caringkindnyc.org.

    Jed A. Levine
    Executive Vice President
    CaringKind, the Heart of Alzheimer's Caregiving

  22. I admire Elizabeth and wish her well in this task she's taken on. I hope however she reconsiders putting her parents in a memory care facility as professional care may be better for all parties.

  23. These people are saints.
    But (I'm 70) I need to find a way that our kids never have to endure anything like this, not only out of concern for them but for our own dignity.
    I would much prefer an impersonal institution BUT, when the time comes, if it comes, will I be in any position to make the choice.
    I guess some sort of living will is the answer.

  24. I apologize for the mistake in my previous comment. Bless you, Elizabeth!

  25. The way that you are looking for is to enter a life care/CCRC community NOW while you are still well. You will enter as an independent resident and move up
    (down?) the levels of care as your needs change. Expensive...yes. But if your goal is to spare your children hands-on caregiving miseries, it's the most reliable tactic.

  26. A living will, long-term care insurance (VERY important to choose carefully), and awareness of resources such as the Veterans Aid and Attendance benefit. Also, I strongly encourage Baby Boomers to plan now by taking a "just in case" tour of elder care communities, starting with the rehab (also called "acute care" or "sub-acute care") NOW, before you need it! Find the place that will be a good fit for you before someone else has to make the choice for you. If you have the time, and it's feasible, volunteer there and learn the culture. Try the food. Get to know the staff. When it's time to make the transition, it will be like going home. No, this isn't a practical plan for everyone, but for those who can, it will make it so much easier.

  27. I was the caretaker of an Alzheimer disease (AD) patient last year. His condition declined during my tenure in the household and I had to be on call 24/7. There are now three women working in shifts taking care of him, so I can imagine what it must take out of Paula caring for her parents!

    As a graduate student in the nineties at the University of Connecticut my advisor and I showed that anti-inflammatory treatments slowed neuronal damage due to small polymers of beta amyloid, the plaque protein found in Alzheimer and normal aged brains. Today we have monoclonal antibodies that clear these small molecular species so there is hope for people with early AD.

    I went to medical school several years after finishing my PhD and I would like to become a geriatrician. Although I have been unable to get a residency (I'm 56) I know that Alzheimer disease is one of the top ten causes of death in the United States as well as in the majority of developed countries. We need more funding for elderly care and residency programs that are more elderly specific, since one has to do three years of internal or family medicine before doing a fellowship in geriatrics. My hope is that the next president will push for more residency spots, particularly those geared to elder care and that the medical establishment will foster this.

    Robert Weltzien MD PhD

  28. Please Geriatrics Fellowship directors, give this man a seat at the table! He brings maturity and empathy, as well as all the knowledge and experience gained in PhD/MD training.
    We baby boomers are going to need the well trained geriatricians.

  29. It is wonderful to hear you want to practice geriatrics medicine. As Dr. Atul Gawande has indicated, there is quite a shortage of Geriatric doctors. I wish you well in your practice.

  30. I learned last week that that in my city the state medical school and related hospital, with clinics in several surrounding suburbs, has just one geriatrician on its entire staff. On the plus side, It does have a geriatrics class for medical students, and a program that matches incoming med students with volunteer "senior mentors" for four years.

  31. Every day I see another slice of my Mother's humanity peel off. The sadness, grief, guilt and yes, anger come at me in waves. My husband and I are doing our best for her. I have income, caregivers, support and yet I am so tired. There is no upside here. We have alarms on our doors, get baby sitters to have a quiet dinner out and are constantly editing our conversations so as not to upset her when she does not understand. It is a tightrope as we are both still working -a caregiver calling in sick is a major crisis, a new ailment means yet another doctors appointment or trip to the emergency room and more time away from work. This is harder than raising a child with so little upside.

  32. Daughter, your mother is still fully human. Different than she was, but her humanity is intact.

  33. You sound as though you are at the breaking point. Please put yourself first (that is not selfish) and reconsider what actions are best for YOUR physical and emotional health.

  34. Dear Readers,

    Elizabeth here. That's me in the photo with my Momma. I feel so sad that you do not get the chance to read in this piece about the amazing siblings who take part in this caregiving journey. Every single "we" you read is spoken from my heart on behalf of a beautiful and strong family unit that includes my sister, brother, and brother-in-law in addition to my parents and husband.

    Thank you for sharing in our story,
    Elizabeth

  35. What a moving and inspirational story this is--you, your husband and siblings are saints. Not many people could do what you are doing. Your story is certainly a testament to the enduring power of love. You are all shining examples of that. Thanks for sharing your struggle.

  36. I'm glad you clarified this-I was just about to comment, asking why this intense and awful burden has be placed on you alone, and wondering why your siblings didn't help out and share the responsibilities with you.

  37. I' hope your decision not to have children is not because of this situation
    You would obviously make an amazing mother

  38. Elizabeth is a saint. I don't know the rights and wrongs of how she and Casey have chosen to handle the care of her parents. Doubtless there is increasing research into and awareness of elder caregiving issues, and experts who can speak to those matters better than I can. But there is clearly so much love and tenderness in how she takes care of them. Their photographs are some of the most moving things I've seen in a long time. Good luck to you, Elizabeth. Don't forget to take care of yourself, and to stop every once in a while to acknowledge what a good daughter and person you are. I hope the universe rewards you.

  39. '...Elizabeth is a saint...'

    This is how women are 'rewarded' for putting everyone else's needs before their own.

    I love my children far too much not to prepare for my inevitable decline and would be horrified if anyone called my daughter a 'saint' for giving up her own life for mine.

  40. "Long term care is the largest unsecured risk facing Americans today" – Money Magazine.

    Jonathan Pond, Financial Planner, says that 90% of estates are spent this way: 1) nursing home, 2) IRS, 3) children, 4) grandchildren, 5) charity.

    The Federal Deficit Reduction Act provided for every state to have a Partnership program to provide asset protection for those who buy qualified long term care insurance policies. http://www.partnershipforlongtermcare.com

    Insurance is always cheaper than paying out of pocket. With a 70% chance of needing care who's gonna pay for yours? Learn from our mistake: you have to buy insurance before the diagnosis!

  41. In the New York State Partnership program, the cost of paying for coverage went up about 40% last year. Such unexpected jumps mean that many would be forced to abandon policies just before they are needed.

  42. You are so right. Take heed, everybody!

  43. My spouse and I have these policies, but they are poorly regulated - our policies are frankly a scam. When we bought them 20 years ago, through our employers, there was no choice of plans (still true). They are designed to fail - "lapse" - when you need them the most. Here's how it works - The fine print says if you miss a payment, the policy can be cancelled after 31 days. 31 days! My lights stay on longer than that! IF some on-the-ball family member realizes and gets things sorted within 6 months, and IF I now qualify for benefits, the policy can be reinstated. But if my household was temporarily disrupted - as my Dad's household was when a serious - but transitory - illness came along - tough luck - the policy would be cancelled. There is a center at Boston University that has studied the lapse rates of these policies but there is no regulatory movement to change this. Some states require benefits to remain in place in proportion to the years of premiums paid. But most states do not, since insurance regulators are in the pockets of industry. Elizabeth Warren, please take this on!

  44. My father had Alzheimers. He had gotten to be too much for my mother to take care of and we moved him to a facility where my mother could live independently close by. He wanted to go home for a few days, but then adjusted. I am totally confident that, had he been himself, that is exactly what he would have wanted us to do. There is no way in the world that he would have wanted us, particularly my mother who was the primary care-giver, to go through an agonizing seven years until his death.

  45. Elizabeth and her husband are saints.

  46. Agreed

  47. My 78 year old mother has Alzheimers and is cared for by my 81 year old father. Although we have tried to help my parents, they prefer to do things themselves and want to stay in their house as long as they can. Although I constantly suggest to my father that he get take some respite time and get out of the house when an aide comes in one day a week, he refuses. It is not a bad thing to hire help if you can afford it (which my father can) but I think too often that caregivers don't take enough time for themselves. This is a wicked disease that I can only hope is cured in the near future.

  48. This is a profound article. Reading it, one has to wonder, would you make the same sacrifice? Having watched three relatives experience progressive neurologic disorders, and as a neurologist who cares for patients with similar conditions, the toll taken on family is incredible. It may not be apparent now, but one wonders if there will be regrets later. Until the United States puts in place a system to provide care for older individuals, we will never approach the enlightened level of care in European society. For us, medical bankruptcy seems to be an acceptable norm. It's a national disgrace.

  49. It concerns me that as a neurologist dealing with these patients, you wonder if the caregivers will have regrets later.

    I made the same sacrifice, twice. First with my grandmother who passed in 2009. Almost immediately thereafter my mother was diagnosed with Alzheimer's, and she now lives with me.

    The question, for me, would be to ask those who do not care for their parents if THEY will have regrets later.

  50. Medical bankruptcy is acceptable in Ireland, too, though there may be more cushions at the bottom of the process - thin as they are - than there are in the US. Caring for a frail elderly person with dementia does take its toll on the health of other family members - I was moved and amazed by Elizabeth Wolf's account of how she and her husband care for her parents at home. We simply couldn't have gone on safely managing for my husband, even with paid carers (wonderful people) coming in for 6 - 9 hours a week. It is very sad, his being in a nursing home, but we are fortunate that it's extremely close and the care is good. He has good days - some very good - and bad days. So do we. But I like to think we will always be here for him, able to visit, love and advocate for him. Without our own health, that wouldn't be possible.

  51. The enlightened care in Europe is not so enlightened. My friend's mother fell and while in the hospital they found out she had a stroke. She had mostly memory problems, but not mobility problems. My friend's brother wanted to take her to live with him, but the authorities said she would have to live in a nursing home. My friend flew back to Germany to help. Her mother (who we all called Oma) was alert enough to know this was not her apartment and she did not want to stay there. They did nothing for her. She was put at a table and left there with all the others. She stopped eating, but the staff didn't say anything until she was in the hospital again. My friend went back to Germany and tried to get her moved to the states. The authorities said she couldn't travel. My friend stayed there and went every day and made sure they were feeding her, but she couldn't stay forever. There was no therapy at all. A few months later Oma died. My friend feels sure she would still be alive if she were here.

  52. I am awed by the couple's devotion; it would not be right for everyone. At least they do have some assistance -- I know there are people out there - single caregivers - who have none. Some caregivers collapse with illness of their own; other lose so much income they are going to live in poverty - now and in their own old age. A few neglect or abuse, often because of their own desperation. As people with AD and other dementias become less able to navigate, worry about wandering and falls is replaced by the need for lifts and two person assistance for transfers and baths. There is also a time for them when nothing may seem familiar: not the rooms or the furniture, and last , not even the voices of those close.

    We desperately need a "moonshot" effort to prepare for the aging of our society with more socialistic( socalled) supports, rather than pretending that there are enough family members able to do this well enough on their own.

  53. Exactly right. So why do we glorify people who are doing what Elizabeth Wolfe is doing? As I said below, she is an admirable human being, for sure. But this is NOT the way we should be handling this, as a society - holding up individual True Life Saints for applause, while failing to take measures to make sure everyone is entitled to affordable, quality health care.

    She's one person, doing what she feels she has to do, and as an individual, I admire her. But this isn't the answer to the problem!

  54. We treat sports figures as heroes. We worship famous singers and actors. We lionize politicians. Surely it is ok to "glorify" the occasional person who sacrifices everything for her parents, no?

  55. 100% correct. We could afford it now, if we chose.

  56. We are developing the drug for treating Alzheimer diseases. In our latest human clinical trial, we find the > 50% of the patients with mild and moderate Alzheimer disease improve their cognitive abilities after the treatment. We are working with FDA for the further clinical study. You story make me fell that what we are doing is very important for the aging society. Although our experimental drug has not been approval by FDA, we have a compassionate use program for Alzheimer patients. If you are interested, I will introduce you to the people in my company who can make the arrangement.
    Take care of yourself,

    Guosong Liu MD, PhD
    CEO,
    NeuroCentria
    www.neurocentria.com

  57. To see such love and devotion of a child for her parents is so very moving. I want to give a pile of advice but everyone does what they need to do, as Elizabeth writes.
    However, there's a dark side to this level of responsibility and the stress that comes with it. When my father had Alzheimers, my mother cared for him at home for several years, it was a huge strain, then when it became impossible, her went into a facility and she spent every day there looking after him, to a point of feeding him with a teaspoon when he couldn't eat. She was so broken by the stress, both emotional and physical, that she became ill and two weeks after he died she was diagnosed with cancer, after a string of serious illnesses that developed on the way. Would this, the illnesses, have happened anyway, maybe yes or no.
    Caregivers with this level of responsibility and stress often get very ill themselves.

  58. What brought tears to my eyes was reading about Elizabeth's father saying, "I'm so sorry. I'll do better." To have someone that you love so close physically and yet so far away on other levels, and yet there's still that deep connection buried somewhere, under all the layers of the disease.
    My siblings and I are dealing with a mother who has symptoms of an early stage of dementia but refuses to be tested, let alone seek out treatment. (She'll forget that some of her relatives died years ago, or won't remember where the paper plates are in the kitchen where she's lived for almost 50 years.) But for now we're fortunate that she's still "there" enough to recognize who we are and relate to us in a meaningful way.

  59. John Steinbeck had a similar living experience with his aging parents. His writings about that period in his life might be helpful to others.

  60. This is not a sustainable situation. The price being paid by the daughter is too high, and may become higher. Her mother may well last for a decade or more. I hope that she will reconsider reordering her priorities and put her own life, and her marriage, before theirs.

    For people with any of the dementias, maintaining the body when the mind has gone makes no sense.

  61. To what degree must the mind "be gone" before you would advocate that we fail to "maintain" (i.e., feed) "the body"?

  62. Unhappy, just what do you advocate? It truly makes no sense to engage in extraordinary measures such as tube feeding when a person has more advanced dementia. They suffer. There is some rightful debate about how infections, heart disease, etc. should be treated in those with dementia,. But dementia does not remove our obligation toward the patient to maintain them in comfort with reasonable care until they die a natural death from the dementia or another illness--which need not be aggressively treated. However withholding reasonable care and nourishment simply because of severe cognitive decline raises very troubling ethical issues--I would say it might border on taking a life. Absent advanced directives (and even with them) it is sometimes very difficult to know where to "draw the line" in degree of care to be provided but I hope that merely because cognition has been reduced, you are not saying that withdrrawing reasonable care is always the right path to be taken.

  63. Perhaps it is Alzheimer's but a warning that diagnosis cannot be made from a 'test', the only way of diagnosing it at the moment is a spinal fluid test for proteins. It took 4 years in the UK to get a diagnosis for my husband, who has lost his short-term memory but he does not have Alzheimer's: the cause is TB meningitis which he had as a baby. He has led a normal life, getting an MA in modern languages and being a strategist/management consultant and this can happen in old age but there is no research as most babies died of TB meningitis in the 40s and 50s. There are many causes of loss of short-term memory and dementia, but, in this case, his longer-term memory, languages etc. all remain.

  64. As an adult daughter whose parents live with her and her family, including one with AD, I can say that there is no-one-size-fits-all approach here. However for us, my parents are not a burden. It is hard sometimes, but a privilege to love and support them through this, as they have loved and supported me my whole life. My best wishes to all of you affected by the scourge of Alzheimer's, and my most fervent prayers for a cure.

  65. Asking people to make living wills - or, as in some European countries such as The Netherlands - opting for euthanasia is the most humane way of dealing with this situation. Love is about reducing suffering, not just about life and caring.

  66. A living will directs or declines medical intervention. Nothing to do with euthanasia, which is the killing of another person "for their own good."
    Jacques is correct, though, that the Netherlands and Belgium now permit doctors to prescribe fatal doses to people who ask, even for people who are merely depressed, or disabled. To what degree demented people are killed at the behest of their kin, is less openly discussed.
    To read Jacques' comment literally, he is advocating killing demented people, to reduce their suffering, because you love them. This is a very common theme in popular culture and a very popular idea in many people's minds.

  67. Thank you, Elizabeth and Paula, for an honest depiction of taking care of parents with Alzheimer's Disease. I used to hate reading about it or seeing movies about AD caregiving, because the stories were so sweet and sentimental, whereas usually I faced anger and hostility with my first episode AD family caregiving, .
    Elizabeth, her siblings and husband, all have generous hearts. Most likely they can go on because they support each other.

    I unfortunately have suffered from low levels of depression that waxed and waned since adolescence. I had no family support to take care of my mother when AD struck her. I did the best I could, but ultimately had to choose between working to pay for my daughter's college education, my mental health, and my mother's safety and happiness. My mother lost out. She spent her last 3 years in a medicaid supported nursing home, nothing like the Hebrew home in NYC where NYT columnist Jane Gross depicted the care her frail mother received. Four years after mom's death, I still feel lots of guilt about that.
    I will not put my daughter through that when me and her dad grow frail.

  68. In other words, what? How do you intend to prevent your daughter either from having to care for you or from having to supervise institutional care?

  69. Your mother did not lose out. You made the best choice you could and your mother had a roof over her head and professional care in her final years. You should not feel guilt at all.

  70. My mother battled severe effects of Alzheimer's from around 2000 to 2012. For a time, my father cared for her, but it was hard, as he had cancer. When he died, my two brothers and I stepped in. We worked hard for her, and it was very rewarding--getting to know her again, and becoming much closer to one another. Still, we did not attempt a sacrifice so great as this one is. I commend you, and I wish you the best, whatever your future choices may hold.

  71. Wonderful testimony. I thank my beloved 81 years old dementia mom some twenty times a day and get happiness and joy caring for her these past seven and a half years. I'm now almost 50 years and still single. I guess I'm the happiest and luckiest man alive. I suggest every children young or old to always thank their mother or dad everyday and get strength caring for them when they get dementia.

  72. I'm 58 years old and in good health. My mother is 80, my father 84 and grandmother 99, they all live together in South America with a maid and a nurse. My mother and grandmother are the same, they don't remember anything and ask the same question all day, every day. My father is in perfect mental health so it is very hard for him to live with them. There are not many facilities there for assisted living. I have written a letter to my children that when the time comes that I can't live alone, I want to go live in some kind of assisted living or nursing home. I don't want to burden them that's why I'm telling them now before I say. I don't want to.

  73. Elizabeth, I hope the positive comments from readers help sustain you. Every time someone appreciates my efforts (I'm also caring for two parents with dementia) it makes it a little more bearable. My siblings have been amazing, as well; it takes a village! I've learned that it's OK to cry every day, and that laughter, singing and dancing are soul-stirring even when we cower in the darkest recesses of our minds. I've learned that my parents are amazing individuals with a great deal of courage -- even as their cognitive abilities decline, their personalities shine through. It's not a difficult decision when you factor in the sacrifices made by most parents raising their families in the 50s and 60s... and when you finally understand that love is everything, anyway.

  74. I have told my son and over and over and I will continue to tell him: "Put me in a residence. Do not repeat do not listen to me if I cry, get sick, or beg to be taken back home. Do not. I want you to live your life."

  75. I've gotten used to being the nay-sayer on these pieces, which are becoming SO familiar. Having been a Bad Daughter all my life, I'm used to the recriminations that often follow. This is nothing against Elizabeth. She is obviously a truly lovely person. But I am so tired of martyrdom to elderly parents being celebrated in our culture, and the predictable comments calling her a saint.

    We are not necessarily obligated to sacrifice the best years of our lives to care for elderly parents. This is not right for all families. There are families where the parents did NOT care for the children properly when the children were young. (In fact, it doesn't sound like Elizabeth's parents were always very nice to her.) Why are grown children obligated to do for their parents what was not done for them? Why would we be obligated to care for our parents instead of our children? Our first duty is to our children. If we sacrifice our own best years, when we should be raising our own families and/or building careers and financial security, then when WE are elderly, we will be subjecting our own children to the same demand for martyrdom. Is it right? We are passing the buck.

    Loving parents would NOT want their adult children to martyr themselves in this way. I've made clear to my children I'm to be put in a facility if I reach this sort of condition. Please visit often, I said, if you can - but do NOT sacrifice your life for me.

  76. What happens is that women are called 'saints' for their martyrdom, which is how women are manipulated.

    I would never allow my two children to give up their lives for me, which is why I have a retirement plan, long term care insurance, and have moved into a small apartment with a doorman, so I can have everything I need delivered.

    I have prepared for the inevitable because I love my children. Why would any parent do the opposite and treat their children as servants?

  77. Pl do not judge people.
    There are people who have lots of love ,compassion and will sacrifice for loving parents.

  78. DW, you do make some good points. Not everyone has had loving or healthy relationships with parents. Some parents have been abusive in one way or another to their children; some adult children are not capable of being caregivers, no matter how loving their parents have been. The latter is not meant as a judgement. Just as not everyone is cut out to be or wants to be a parent, not everyone can or wants to be a caregiver. Elder abuse is real and caregivers, under constant stress, may be at danger of abusing, even parents they love and sincerely want to care for. Some children, though, are not well-intentioned. The most frequent abusers of older adults are family members.

    However, not every caregiver is engaged in self-martyrdom. I believe we should not judge, no matter what choices people make. I am more inclined to not see placement in a long term care a failure or lack of love. Sometimes it is a necessity. Sometimes it is the most loving decision that can be made. Sometimes it is a preserver of life--the patient and/or child. Whatever choices are made, our society fails those who make them--especially those providing care at home, but also in the sometimes poor regulation of long-term care facilities.

  79. I can understand this article on a very visceral level. I am in my thirties, a single mother, and take care of my mother with dementia. I have given up so much to keep her in her home and with us just a little longer. I don't regret it but I do mourn for the life that could have been.

  80. Wow! Such a compelling story! I just lost my Dad to Alzheimer's last October at age 90, and my mother to some form of dementia 4 years prior, at age 89. Both were healthy and strong in all other respects. It was a long 10 year slide, involving cobbling together increasing care, and dealing with periodic acute situations punctuation the chronic decline. It was extremely stressful, particularly for my one sister, who was closest geographically. We were lucky that my parents had good pensions and savings and we were for the most part, able to put care in place at home. Just like raising children, you can't simply walk away, no matter how stressful it gets. My greatest concern is that if this should happen to me, I know what my own children will be facing. I am preparing the best I can, with long term care insurance, and detailed advance directives that explain that I don't want to be fed or hydrated if I can no longer pick up a spoon or cup by myself. I will say, that despite all of the hardships, it was an honor to hold their hands and provide love and support as they took their last breaths, just as they had when I took my first breath 62 years ago. The circle of life.

  81. Thank you for taking care of your parents and setting a beautiful example for your own children.

    Why did you ask that you not be assisted in eating if you cannot feed yourself, though? Law and ethics require that we feed helpless humans. You have every right to refuse to eat, absolutely, but not to require those around you starve you to death. It's a terribly important distinction.

  82. Barbara Coombs Lee, the head of Compassion & Choices, has been quoted in this newspaper as supporting the sort of advance directive this writer contemplates: that a person, while of sound mind, may be permitted to direct that, in the future, hand-feeding be stopped in order to cause the death of the person once that person is demented and "no longer" his/her former "self." Of course, this ignores the wishes of that future self--a demented person who may want to live, or, at least, is incapable of understanding the pros and cons of life vs. death, and one of whose last pleasures may be food. The reply that our laws distinguish between removing medical interventions such as tube-feeding, vs. making it a crime not to spoon-feed a helpless person entrusted to your care, is spot-on (I'm summarizing, b/c NYT doesn't nest replies.)

  83. Anne, that you think someone can be simultaneously incapable of understanding the pros and cons of death, while also changing his or her mind about an advance directive speaks to how rigidly you insist on extending life by artificial means.

  84. My heart goes out to this lady...been there, done that - please get help at home too. The weekends are can be Hell by yourself!

  85. Deepest sympathy to you, Elizabeth. That you've been able to make use of help and programs is a model for other care-givers, who often are so overwhelmed that they can only keep doing the daily routines and never look up or around for any help.
    One piece of advice from a child of a parent with dementia: keep getting doctors to give them full checkups. I and the care nurses ignored my mother's complaints about her arms hurting, thinking that she was just expressing vague frustration due to dementia. Only when we died did the nurses tell me that x-rays taken during her final hospital stay showed necropsy of her shoulder bones (possibly due to breast cancer surgery years before.) So don't put all of the physical problems down to 'Alzheimers' - your mom's too-frequent bathroom needs could have a physical reason that might be treatable.

  86. Oh my this was so tough to read. I had to stop reading and walk away. But it never left my mind and I had to come back and finish. I'm so saddened by this story. More so because I think my mother will fall into the grips of Dementia soon. What do I do? It's a scary thought.

  87. Ewow, if you have some suspicion that your mother is having an unusual cognitive decline, make sure she gets a thorough medical. It could be something else. If it is not contact the Alzheimer's Society in your area. Start planning now.

  88. Ewow, Also get all the legal papers in order. Now.

  89. The advice of "take care of yourself, caregiver," is one I hear often, but I wonder if caregivers really take it to heart. My mother has dementia and, as an only child, her care has been intensely my responsibility for the last eight years. Assisted living, memory care, falls, surgery, broken bones which the frail body can no longer mend has now left her wheelchair bound in a skilled nursing facility. In October, my health came crashing down and the world stopped while I was sucked into the healthcare system. The "take care of yourself" advice became very real to me. Left my mother in the care of others and focused only on me. She needs me to be well, to be whole, to be here. How much did all the stress I deal with managing her care and life contribute to my problem? I do wonder. I now see this as me first, her second in my list of responsibilities. I want the long life she has had. I must work to make sure that happens. Take care of yourself, caregivers, before something happens to you.

  90. Your comment could have been written by me. I had a heart attack last year, at the age of 57, in the midst of dealing with my mom's increasing cognitive and physical frailty, coupled with the stress of my son's final year of high school and college application process. Yes! Be a self-sacrificer if you want, but understand that there are real costs associated with being a caregiver. (By the way, despite her claims that she loved her house and never wanted to leave, my mom moved into an assisted-living facility last fall. After a week of unhappiness and a change of roommate, she's now doing much better than she was at home--just as her doctor had predicted to me that she would. She has people around to talk to, activities to engage in and, most importantly, competent, caring PROFESSIONALS to see to her health-care needs.)

  91. I cared for my mother for only seven months after a doctor caused a severe stroke during surgery. In one fell swoop she was changed from an intelligent, active woman to a creature unable to do basic things with dignity. As I read your essay, all my old feelings of stress, exhaustion, and sorrow returned.

  92. For those of you reading this, I want to say that I took care of my mother in my home for five years, while working full time. No, she was not mentally impaired, but she was frail and blind and in her 90's. I moved her into a nursing home for the last year of her life. She hated it, hated it, hated it .... for a while. Then she gradually came to like it in many ways. She loved the staff, and hearing about their lives, their children, their college courses, their home countries. She met some other pleasant residents, and had fun at the dinner table. She flirted with the doctor who came every so often to see how she was doing. She enjoyed some of the activities, the sing alongs, the art classes. She enjoyed, sometimes, complaining about the food. The nursing home had a cat, and so we got some kitty treats, so he would visit my mom's room often, and even lie on her bed! She was far less lonely than she had been at my house, with me at work every day. Of course I visited often, and took her out for rides and to my house for holiday dinners. I
    But I want people to avoid guilty feelings when they consider making the choice to put their loved one in a home. There are pluses and minuses. It does NOT mean you have stopped loving them. And you can do a lot to ease the transition, including supporting and complimenting hard working staff members. And, be patient about the transition. It takes time.

  93. Thank you for this. I have had to refrain from neck-punching one of my husband's relatives who made judgmental comments about "the kind of people who 'dump' parents in a nursing home." Both of my grandmothers went into nursing homes because they could no longer live safely at home. Older houses are lovely, except for the small bathrooms that make bathing and toileting an advanced Alzheimer's patient impossible, the steep stairs that are a potential deathtrap for a centenarian with dementia, etc. My grandmothers received quality care and attention, and died safe, warm and cared for in a nursing home. My parents were able to focus better on their parents' care with much less stress and worry.

  94. Your situation is quite different because your mother was mentally intact. I would never desert a mentally intact family member but severe dementia is quite different.

  95. Allan Theobald, I wasn't aware that anyone here spoke of "abandoning" someone. You, one can only assume, are perfectly well equipped to care for someone who is elderly, very frail, and blind. Unfortunately, not everyone is able to do so. However, there are many nursing homes whose staff members have the needed skills.

  96. The author is acting in accordance with her value system and should certainly be commended for such. Having witnessed the progression of AD in family and friends, I do worry that the caregivers sacrifice too much for an inevitable tragic ending. For me, the cost of giving up my life (marriage, children, career) would likely lead to resentment and total exhaustion. As a parent, the thought of burdening my children with this care taking would be even more abhorrent. As others have pointed out, limiting any life extending medical interventions also makes sense.

  97. Very painful and very real. I took care of my mother for 15 years... it started exactly the same way: I would go there to help and stay for a couple of months. I stayed for 7 years, until I met my husband and managed to hire a "team" of caretakers that I could control from (slightly) afar. I also had a "me time" which included going to the gym to stay alive. I also cried of desperation in order to convince her to take her pills. I was also awake for nights in a row, because she would call me so many times. At some point I wished I could change my name.

    The fact that I met my husband on the Internet, while I was in a situation in which I could not leave the house for more than an hour at a time, actually saved my life. I was in Brazil, he was in the United States. Somehow we found a way to stay together, he moved to Brazil and helped me deal with the pain for another 8 years, during which my mother wasn't conscious anymore.

    She passed away 4 years ago, in April 2012. My husband and I are now living in the United States. But I still carry the pain with me wherever I go.

  98. Please consider therapy to assist. Many caregivers have ptsd.

  99. I fear becoming this woman's mother more than anything, far more than death. I give to Compassion and Choices in hopes that we will someday have the legal option to free ourselves from such suffering.

  100. I'm sure you understand, though other readers here may not, that Compassion & Choices CLAIMS to only support assisted suicide for people who have a diagnosis of an illness that, on average, may be fatal within six months (whether with or without treatment, they are a bit evasive on.) They also claim that the fear of disability does not motivate people to want help killing themselves.
    Those claims by C&C are clearly, knowingly, false. Barbara Coombs Lee (head of C&C), has been quoted in this newspaper as saying that the question of whether to "assist" the "suicide" of people who are physically healthy but so addled with dementia that they are no longer intellectually capable of understanding the implications, is a matter "for another time." That's pretty chilling. Look at the photos of Ms. Wolf's mother--heartwrenchingly sad, but would you be in favor of killing her, as Ms. Coombs Lee would, to "spare" her from her confusion and fear, and from needing to be cared for?
    Meanwhile, "fear of becoming a burden" is perennially in the top three reasons reported for seeking assisted suicide, along with loss of independence and loss of enjoyable activities. Fear of pain is very low down on the list.
    The comments on this article confirm it: many able-bodied people want their doctors' help in giving them a fatal dose of barbiturates when they become disabled with dementia. Currently, our laws forbid this. C&C fights to change those laws.

  101. I bet if you ask a subsection of professionals, healthcare professionals, fear of pain is at the top of the list. We know too much!!!!!

  102. To anon: you are incorrect about fear of pain. It is, surprisingly, not often cited in the Oregon reports, nor anecdotally by doctors. I was surprised to learn this, too, but there it is. Most people who seek medical assistance in killing themselves are financially secure, white, well educated, with health insurance, and determined to die rather than to experience disability. C&C themselves would confirm this.

  103. My father, 80, died on February 22 after a three-week illness that started as a cold, developed into pneumonia, complicated by emphysema due to 50-plus years of a three-pack-a-day habit, and put him on a ventilator without which it soon became clear he could not survive. But because he had dementia I can only feel that this death was a blessing and might enable my healthy and mentally sharp mother to have some good years. He still knew everyone, was still even driving a little (though I was loudly opposed to this) and until the pneumonia developed he could still get around on his own reasonably well. I hope and pray that one day I will die like my paternal grandmother, who fell asleep in her chair working on her income taxes about six weeks shy of her 90th birthday, and just never woke up.

  104. Was the decision made to remove the ventilator? It's not clear from this comment whether the father could have returned to his previous, or comparable, level of cognition, "knew everyone," and activity, "was still even driving a little . . . could get around on his own reasonably well," once the pneumonia resolved.
    As written, this comment raises very troubling issues. If, while mentally competent, the father had directed that heroic measures not be used to prolong his life if the measures would not return him to awareness, then that is patient-directed removal of medical intervention, and legal.
    But if, as the comment implies, the man's family members decided to remove the ventilator because that would ensure him a quick and painless death from pneumonia (the "old man's friend") and remove a burden from his "healthy and mentally sharp" wife, and otherwise he would recover but not to the full mental health he had enjoyed before developing dementia--doesn't that amount to killing a man due to a mild disability (albeit one presumably destined to worsen)? "Because he had dementia I can only feel that his death was a blessing"--even while he still knew everyone and was capable of operating an automobile?
    I hope there is more to this story than the short comment was able to convey, not that the life of a man was ended just because he was cognitively disabled. It would be helpful to understand better what actually happened, and why.

  105. What happened was that an 80 year old man died of pneumonia. There isn't anything in the comment about removing the ventilator. Clearly, as this is at least the second comment to which you've given a lengthy response, you are deeply concerned about end of life care. You seem, to be of the opinion that those who are cognitively impaired by senile dementias should be kept alive with extraordinary means. I trust that if that is the case, especially given your willingness to make very intrusive comments about other people's lives, you are devoting yourself to volunteering to care for those who have been cognitively disabled by dementia.

  106. Good grief Anne.

  107. Clearly, from many of the comments, people don't understand the scope of this problem. Our beloved country -- this rich nation -- does not provide long term care for people, as we age, as we lose our bodies, as we lose our minds.
    To paraphrase Mr. Lincoln, This nation cannot long endure, half sick and half saint.

  108. Certainly not better than the alternative. Not for me anyway, not for a whole lot of us. No home care for me please, not by family and not by help, and not by government. And certainly no nursing home, retirement home. No. But blessed are those.

  109. Just wanted to add that the photos are simply haunting. Above all else, we have GOT to cure this disease. Her mother's face is so sad and scared and confused. It is obvious that the simple routines of living are confusing and frightening for her. How terrible it must be to live like that.

  110. This is incredibly sad and difficult to read. From the comments it seems that many people see this as a normal, inevitable situation ... advanced dementia, requiring 24-hour care, occurring at fairly young ages (note when Elizabeth became her parents' full-time caregiver, they were only 60 and 76.) It should not be viewed as normal or inevitable. The currently shocking prevalence of severe dementia has no historical precedent. Yes, historically family members often "cared for" their elderly parents -- cleaning the house, cooking, managing their finances or running errands -- which should not be confused with the kind of care Elizabeth and many of the commenters provide (requiring babysitters, door alarms, and physical restraint.) This is a fairly new phenomenon and instead of accepting it as normal and talking about how we need to build more "memory care centers," I wish we could gain more insight into why it's happening at such alarming rates.

  111. A major factor in the rising tide of dementia, tramlev, is our lengthening lifespans. Though Elizabeth Wolf's parents were fairly young, in general, dementia increases dramatically with age.

    As medical science turns formerly fatal conditions into chronic diseases, many of us who might once have died earlier of heart disease, strokes, kidney failure and the like now survive long enough to develop dementia. When we do, drugs and surgeries and dialysis can still keep us alive for years.

  112. This is happening because we are living longer. Bottom line. The older people get, the higher their risk of dementia becomes.

  113. Why are we using surgeries and dialysis to prolong the lives of people with dementia? Even the use of many drugs should be re-visited. An example of foolish allocation of resources is the Medicare requirement that women receive mammograms even when they are afflicted with dementia. That is too often followed by biopsies, surgery and chemo. This is torture when someone cannot perceive why she is being subjected to such treatment.

    There is a reason that pneumonia was once referred to as 'the old man's friend'.

  114. The grief, the isolation of caring for a parent with dementia, a parent who has enough awareness of his situation to weep--I don't think one ever gets over that, and, really, friends can't help you much. I commend you for going to the gym and seeing a therapist. Keeping a schedule of 'me time' will carry you through! Perhaps you could find a new interest to keep your mind and hands occupied when you find a free moment--quilting, knitting, scrapbooking, anything that will take your mind off the sorrow. I wish you well, and thank you for writing this piece that resonates with me.

  115. Judging by what you have written, you may need to make the decision to get care in a facility when your paid home health runs out. You have a right to a life, too--you have been taken from YOUR home. It is not selfish to insist on a compromise--you will do plenty, believe me, in overseeing care in a more appropriate setting. You have to sleep, for one thing!

  116. At 68, I am much more scared of Alzheimers and other forms of dementia than of dying, Assisted suicide should be legal. I am not scared of it.

  117. Since you have a PhD, you may be interested think about these questions, raised by the disability-rights movement:
    1. When you say "assisted suicide," do you mean that it should be legal for anyone to help anyone else kill themselves, for any reason?
    2. If not, what restrictions would you impose?
    3. Would you require that the "assister" be a doctor?
    4. If so, what would be the limits of the assistance? Writing a prescription? Supervising the ingestion to be certain it was not coerced? Somewhere in between? If so, why?
    5. Would you require that the assistee be of sound mind? That would eliminate anyone with a diagnosis of dementia. If you would want the law to permit a person with dementia to be "assisted" in committing "suicide," at what cognitive level, if any, would you deem the person incapable of requesting suicide? Who should decide that?
    6. Would you require the assistee to have a diagnosis of terminal illness? If so, what about someone with a progressive, but not in and of itself terminal, illness?
    7. Would you be comfortable with a household member picking up the fatal prescription and giving it to the assistee?
    8. Would you be comfortable with a fatal prescription being kept in a home?
    9. In many cases, money can address some of the "problems" of disability--for example, there is no reason, other than cost, that a disabled person couldn't have teams of skilled professional care-givers assist 24 hours a day. Do you favor raising taxes to pay for that?

  118. Are you interviewing CC, or grilling her? And why?

  119. This is my reply to JenD. In response to this article, CC said she wants assisted suicide to be legal, and she identifies herself as having earned a doctoral degree. I am asking her to think through her position. As an attorney active in the disability rights movement, these are some of the many questions raised when people advocate repealing laws that prevent people from helping others kill themselves. It's often presented as a "choice" for people of sound mind who are terminally ill. But as the reactions to this article show, many people want it available to kill themselves or their family members rather than live with a mental disability.

  120. God will reward you both in this life, and the next (where you will also be reunited with your healthy parents) - inshaAllah! (God-willing)

  121. A couple of additional things:
    Once she settled in to her assisted-living facility, my mother stopped missing her old house entirely. I waited several months before selling...just to make sure, and when I took her back to visit before closing the sale, she barely even remembered the place. Any nostalgia she may have felt was outweighed by relief that she was no longer responsible for it.
    So: three bits of advice for anyone weighing what to do with an aging parent with Alzheimer's:
    1. "After the initial adjustment, I find that most of my patients actually do better in assisted living than at home." That's what my mother's primary-care physician told me. I didn't believe her. I thought my mom needed the familiar surroundings of the home she had lived in for 50-plus years. I was wrong, and the doctor was right.
    2. Expect that "adjustment" period. But just as with a young child going off to school for the first time, the adjustment WILL happen. If anything, elderly Alzheimer's patients have an advantage here, because they forget the past so quickly.
    2. Do your homework. Research as many facilities near you as thoroughly as you can. Above all, try to meet with the people who actually run the place on a day-to-day basis, not just the ones responsible for selling the place to potential new residents. A kind, caring, experienced staff will be the number one factor that will enable you to sleep at night after turning your parent(s) over to someone else's care.

  122. Nancy C your comments are spot on. For that matter, although I am in my 60s I am exploring these services for the future. I am fortunate that I have lots of contacts in healthcare and assisted living. You do have to do your research.

  123. Thank you Elizabeth for sharing your story. Hopefully this will help the medical industry, politicians, whomever it takes to help fight the fight against Alzheimer's Disease. You are a brave family and I applaud your dedication to your family. I will pray for you and your family everyday.

  124. No, the big money goes to cancer and maybe heart disease. Alzheimer's and other dementias are the johnnie-come-latelies which get the pittance so left. Not to mention that other diseases may strike the young also and dementia is largely a disease of older adults. Ageism, anyone? But the lack of attention does society no good. The largest single payer for nursing home care in the US is Medicaid. If you don't worry about the diseases of the old, worry about where your taxes are going. Dementia research needs major, consistent, ongoing investment, as do programs to help caregivers and families most burdened by the disease.

  125. Elizabeth, I was a customer of your father and uncle in the 1980s. Theirs was my favorite fabric store on 4th Street, and I valued their friendly interest, advice, and expertise as I acted with their help as my own decorator. I still love the fabrics I chose with their guidance. My mother developed Alzheimers in her mid-60s and died at 73. I tell people that caring for a person you love who suffers from dementia means having your heart broken anew every day.
    I sympathize with everything you have written and commend you on the love and devotion you have shown. Whatever decisions you make in the future, I'm sure will be made with love and wisdom and will be sound ones. I wish you continued strength and the best the circumstances can offer. Your parents would be so sad to understand the burdens they have put on you, but they would also be so proud of the woman you are.

  126. What a beautiful message!
    I hope Elizabeth reads your lovely words.

  127. Dear Anne, I am so happy I came online to take in the comments and found your words. My father treasured his customers as family, and your remembrance of him and my uncle touches us. Yes, what you say is so true, the heart break is constant. Yet it is balanced by extreme and exquisite tenderness. Thank you so very much for your words and wishes. They mean the world to me.

  128. I agree with the author...I only hope that I will find the strength and dignity to carry my parents through whatever illness life brings. I will sacrifice because (for me) there will be no other choice, and because I know that they would do the same for me. But dementia...these plaques that gradually eat away at the very essence of ourselves...God, it's terrifying. I hope research brings us better alternatives than we have now.

  129. It all depends on the severity. Once your parents no longer recognize you it's time to put them in a home. Care facilities in the US are too expensive for most people but placing them in Mexico or elsewhere is an option. What you can't do is spend years of your life caring for people who will never improve and are effectively gone. Once they reach this point the best thing is to let them go. No one wants to exist as a zombie and if left alone they will pass quickly. 24/7 care to feed and care for them does them no favors. let them go with dignity.

  130. Ship them to Mexico??? Lovely.

  131. What would you do? Fly down for the weekend, pop in and fly back again? And you are quite wrong about people who "do not want to live like a zombie" dying quickly. The average time from diagnosis to death is roughly five years. Those diagnosed before 70 live on average about 10 years post-diagnosis. Some people live up to twenty years. Lots of tickets to Mexico, I guess...

  132. I actually think that what you wrote, placing the burdensome, demented elderly in Mexico WILL become the next popular thing to do. Don't the Japanese do that already? Out of sight, out of mind. Everything is at arms length.
    Why make the hard choices like campaigning for pro death choice, when you can make the easy choice of creating elderly communities in Mexico? Like taking your family dog to the animal shelter and just KNOWING some nice family will adopt him. Actually dogs die better in America than humans do.

  133. Under no circumstances would I do this for my either of my parents. Certainly not for my mother who was, as the article says, intensely critical while I was a teenager, and who only gets worse as the years pass. Also not for my father, even though we had a closer relationship.

    I have children of my own, a spouse, and a working life. My children have a claim on me that my parents will never have, and which I will never have on them. It is incredibly selfish for parents to expect children to make these kinds of sacrifices. My mother seems to think I'm going to support her in old age after a lifetime of poor money management. No, I'm saving my money so that my kids don't have to do this.

    Unfortunately, I predict our society will continue to glorify female caregiving of this nature-- it's always easier to try to guilt women into sacrificing money, security, and happiness rather than pony up the money to care for the frail elderly as a community.

  134. Well, some of us don't feel that way about our parents, obviously. I don't think this is glorification of anything. I think it's one person's story and one that is obviously of interest to a number of people. Just remember that the resentment you seem to have for your parents may well come back to you from your own children when you are old.

  135. I agree. It takes an enormous amount of emotional strength (and luck) to care for a demented parent(s) at home - it is not a task to be assumed lightly. What happens if the husband decides he's had enough and leaves or after both parents die, Elizabeth has no job or remaining assets? As long as women continue to take on this burden and deal with the negative outcome without complaint, nothing will change.

  136. Elizabeth, as hard as this job is, as much as your emotions are all over the place, and as tired and beat as you are, the job also is the most rewarding. I took care of my parents. I looked at it as my parents raised us and never once told us to leave as it was too hard to raise us. I have comfort in knowing that my parents left this world being taken care of the way that they would want and where they would want to be. People would tell me that my father had no clue where he was and my answer would be 'yes, he does.' You develop ways to communicate. You just know.

    With that being said, there is no easy answer on how to deal with this. You have to do what you feel is right, what your mind and heart tell you.

  137. Keeping a demented parent at home isn't the only way to do it right. My brother and I each housed my mother for 6 months as she deteriorated. She was not a terrible danger to herself and could still play a mean hand of bridge. As her capacity waned, we placed her in an assisted living home that was perfectly adequate and that her social security and modest pension covered. I moved to where she and my brother were, and she got so many visits that she was sometimes irritated at the interruptions to her bridge-playing. It was a year before she died of cancer, two years total since dementia set in. I have no regrets about the assisted living facility, although it would have been nice if they had remedial bridge classes.

  138. Receivng the appropriate level of in-home assistance is critical or an appropriate facility if you choose that route. Those people who make themselves crazy trying to do it all will end up in trouble. Reading some of the comments reminded me of a case where a female dr took it upon herself to care for two very ill elderly parents in-home. By the time she smothered them both it was obvious that she was clinically depressed and beyond frazzled. No one should put that kind of burden on themselves. It's a no win.

  139. There is no way I would ever do this to my children, as I did not have them so I could have servants in my old age.

    I have saved and invested my entire working life, foregoing expensive housing, vacations, and cars, living well below my means so that I can live independently as I grow old.

    I expect my children to help me when the time comes, but I would never ask them to give up their lives for me, as that has nothing to do with love.

  140. I respect your choice for yourself but who are you to say that caring for one's parents has nothing to do with love? You may disagree with what Elizabeth has chosen to do, but you wil never know her motives because you will never be Elizabeth, nor understand her decision making.

  141. Perhaps your not asking them to care for you is a sign of your love for them, but don't say that children giving up their lives or caring for their parents is not a sign of love. Of course it is. There are many of us who would definitely do everything we could, at our own expense, to take care of the parents who took care of us so well, for so long. And yes, that is definitely love.

  142. Atb: Read what she said again. No one is saying that the children do not do this out of love. The comment is about whether the parent would ASK grown children to do this sort of thing out of love. Is a parent who asks this acting out of love?

    Further, no one is blaming the vast majority of elderly people who wind up in this situation. Most people simply never see this coming. It's human nature to avoid thinking about such things. But the fact is, it is a responsible and kind act toward one's children, to look as rationally as possible at all future possibilities, even the really scary ones. And if you do bring yourself to look coldly at such possibilities, realize that it is absolutely an act of love toward your children to PROACTIVELY make clear to them that you do NOT expect them to martyr themselves for you in your old age - that you do NOT expect them to sacrifice their own health, job, financial security, personal life, other family members' needs, etc., to care for you full time.

    For one thing, if you ask your children to do this, you're also preparing THEM to find themselves in the same sad situation when THEY are old, because they'll have probably had to give up their job and thus been unable to secure their own finances for old age.

  143. This is indeed tragic, and there is nothing to be done about it. Now.
    Had I been the author's parents, I would have hoped someone would have gotten me to a neurologist a couple years earlier, so that I could make sure I ended my life with dignity before this kind of thing happened.

  144. It is difficult to end your life with dignity. It is illegal. You would have to: 1. Be alone. No friends, lovers or family must know a thing about your plans to end your life, much less be with you or you put them at risk for serious jail time. 2. Choose a predominantly violent death unless you have an anesthesiologist by your bedside. My elderly neighbor across the street shot himself with a handgun while his adult daughters whom he had asked to come down to visit him had gone to the community pool. He was a great friendly guy. I spoke with him the week before when he came home from the hospital.
    My Dad also wanted to die with dignity. He believed in reincarnation all of his life, but he did not want to die alone. Who does? But our legal system does not allow assisted suicide. Se died at 94 and had a very rough go of it the last four years of his life. Sad.

  145. Unless you move to Oregon or overseas, you probably won't be able to end you life on your own terms. Suicide is illegal elsewhere in the United States, and anyone who assists you would be tried for murder.

    The difficulty of dealing with memory loss and dementia is that by the time you figure out that you have dementia (and many patients are unaware of their affliction, or in denial), you will probably be incapable of making the final decision or too incompetent to carry it out.

  146. Your parents are so lucky to have you. It sounds cliche but we only have one life to live and once we die that's it, we lose the people we love forever. I have been thinking a lot about the subject of aging. This year both my husband and I lost our dear grandmothers and all of the sudden I can feel our parents aging. I started volunteering twice a week with the Little Sisters of the Poor (Spain) in the name of my grandmother who passed and who did so much for me. It comforts me to think that she died in peace surrounded by people who loved her, many are not so lucky. The Little Sisters of the Poor do the humbling job of taking care of the elderly who have no one else and no way of affording care for themselves. If you have free time and money to spare, I recommend supporting their work, there are many chapters in the USA. The Sisters survive solely on donations. http://www.littlesistersofthepoor.org/resources/our-homes-directory

  147. MM:
    I hear your anger and resentment directed at your parents. However, children LEARN by example. How you treat your parents, will determine how your children will behave towards you, as you grow old, become infirm and eventually die.
    You consider your children having a "Claim" on your time. This is because you are their "father." It is your job, your fiduciary duty to take care of these children until they turn 18.
    Imperfect parents are part of the evolution of creating better families. Having a father to whom you could relate with and a critical mother who has not been economically savvy are teaching points for your own children. Harboring these negative thoughts with the inability to step up to the plate is the voice of laziness.
    All adversity enables a family to become closer, more loving toward each other. Allocating time for both children and elders makes you part of the world in which we live. "Honor thy father and mother" you will honor yourself.
    As you start your journey to honor your parents, you will GIVE more than they take. You will feel more loved in the midst of all this unresolved pain. In the end, you will honor your own mortality and the essence of true family unity.

  148. Would someone with perhaps an ethics and/or medical background speak to treating the author's mother for diabetes, hypothyroidism, and high blood pressure in light of the severity of her AD.

  149. (Actually, Doug's wife, Judith Houlding. Since NYT won't "allow" two accounts.) That's exactly what I thought. What in the world is the point of treating these comorbid conditions, when the quality of her mom's life is so compromised? Two of my three brothers have neurological illnesses (Parkinson's Disease for one and Frontal Lobe Dementia for another). Our mother had Alzheimer's and some heart issues. She stopped eating and drinking and we stopped treating the heart disease. She died after about 5 days, extremely compromised. Unfortunately for my sisters in law and my brothers, they have no other illnesses. They are trapped in bodies that no longer function well, with dementias that leave them anxious, scared and barely the people they once were. I wish they had some way out. And yes, I'm scared on my own behalf. Quality over quantity of life is what I think is important.

  150. My mother is also being treated for these, and has AD. She is 92. I hear what you are saying, but my sisters and brothers would not ever consider not treating these conditions. Life matters, no matter what its form, is what many people feel. I do not feel this daughter would consider not treating her mother's non AD conditions, either, though she is going to wear herself out. She and her husband have large hearts. Her poor mother looks to be full of anxiety. She looks so scared (to me). Poor thing. Poor family.

  151. I'm more worried about the antipsychotics, which are often contraindicated in patients with dementia.

  152. I've been in the same sinking ship as you; I can empathize. I wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms A Caregiver's Tale." My mom couldn't handle Assisted Living either, so after a week there, she lived with my husband and me for 5 yrs. and 3 months, until she passed away. I felt the way you did; my mom wouldn't make me stay at a sleep-away camp because I was miserable there (as a counselor, yet), so how could I make her stay where she was unhappy. It was hard though, as you know. Work schedules had to be adjusted, and she needed help regarding bathing, cooking, etc,; tasks I never would have considered hard for my once active and vital mom. No one expects this role reversal; I guess it's the flip side of the coin: it's nice that our parents can often live to an older age than their parents, but it sometimes comes with a price, in more ways than one.

  153. This very sad story and many of the equally sad responses make my blood boil when I think about how the long-term care portion (Community Living Assistance Services and Supports Act ) of the so-called Affordable Care Act was jettisoned shortly after its passage. Remember that? I was astounded at the time that a key provision could be lopped off at the Obama administration's discretion, because they hadn't done their homework on the costs pre-passage. It was repealed in 2013, and replaced with...nothing.

    If you want to caretake your parent or relative, that's lovely for both of you, but you should have free choice in the matter. As a country, we badly need viable alternatives to what's described in this piece, especially since an increasing number of people do not have children and won't have this resource when they come of age. We also need to solve the riddle of dementia and find, if not a cure, then a way to prevent it from happening.

  154. Looking at the photos of your mom with her stiff posture and staring expression as well as her need for antipsychotics for hallucinations suggests she may have Lewy Body Dementia. It typically has an earlier age of onset and affects the autonomous nervous system leading to severe incontinence.
    I do not know if the treatment protocols are any different.
    At this point you are young healthy and strong but only an injury away from no longer being able to handle the physical demands of caregiving, especially for your mother. Please look again into faculties for their care. You can still be highly involved as a caregiver while reducing the toll on your physical health, including your sleep deprivation.
    God bless you all.

  155. If her mother does have LBD, I believe she should not be on antipsychotics.

    You're quite right about "only an injury away from" not being able to perform these invaluable functions for her parents. I thought of that as well. Just one back sprain could do it. I hope she heeds your advice and revisits the decision on facilities.

  156. I agree - and picked up on the Lewy Body Dementia signs immediately. People with Lewy Body are not tolerant to the typical drugs given to people who do not have Lewy Body. There are a few great books and resources on line - and ask your neurologist if s/he is experienced in dealing with this type of dementia.

  157. Oh God, people, have any of you considered euthanasia? For when a person is for far gone that they don't know who they or their children are, and all that remains is anguish -- and I know this, because, as a last year student, I kept an eye on an old woman at night (she had 2 shifts of nurses during the day). She did not understand what was going on, but she felt that something was very wrong, and you could tell, she suffered terribly because of it.

    This is beyond cruel. Cruel for the sick. Cruel for those who have to sacrifice their lives and resources to take care of them. And who would want to continue in their place? I know, I would not and I'm pretty sure 90% of you would not want it either. Euthanasia is the logical answer.

  158. My mother checked herself into an assisted facility without telling me. She saw it coming. What she had was cognitive dementia - not enough blood to the brain - and she knew it. Mother lived 7 hours away by car and I worked. So she told me AFTER she had checked into an independent living facility, which she call the "triangle of doom" The floor below independent living was the assisted living and severe dementia and the bottom floor was nursing home care - as she put it "doom". I am forever thankful that she herself chose to put herself in the good caring facility..and that she had enough money to do it on her own.

  159. My mom told me that was what she wanted. She had Lewy Body Dementia and declined so very quickly - within a matter of months the facility was necessary, and she would not have been capable of telling me then. I was so very grateful she told me to put her in assisted living when the time came.

  160. I looked after my parents full time at home for 16 years. It was well worth it. I was able to keep them active which helped. Dad was still walking at 104 and that was after he broke his hip at 96. 6 months after the accident, he was in traction for 2 months, he walked a mile. And that was because he kept walking beforehand.

  161. you are an angel. Truly.

  162. This article and the associated comments touch on many, many points - I"ll focus on just one. My own mother was diagnosed with Frontotemporal Dementia and more recently ALS. Up until October she was going to the gym everyday and doing yoga four times a week - come November, nothing. "Weak, weak", she says in her very limited vocabulary. My mom just turned 60 and was one of the healthiest people I know. The point I am trying to make is that these illnesses creep up on you without ever imagining. We never had the talk in my family about what to do in the event of illness. Right now my dad, sister and I take care of her, and I know she appreciates it, but maybe if we had spoken about this before she was ill, we would know her hopes and wishes better.

  163. My dad has frontotemporal dementia; he's 71. We moved him and my Mom from rural California to Indianapolis where my brother and his family live to give them access to better health care. They've both adjusted well to the new house and weather. But it's so hard to hear my mother on the phone saying that dad is beginning to have anxiety attacks and is becoming belligerent. He's constantly agitated. He's long forgotten the names of his sons-in-law. And just today, I think he's now having trouble remembering I am his daughter. My mom prompted him saying "Nicole's on the phone". He came on and said "Hi Nicole, it's Steve." This disease is heartbreaking for all of us.

  164. They need to speak with the healthcare professional on this because with frontal lobe, he could become very physically aggressive. They need to be prepared for that.

  165. This has been a story I have heard -- and while different from my own in details, what is in common is that by the time "we" - adult children, our parents, families - make what seems like a good plan -- often with a lot of work - it turns out to be a good plan for who the parent(s) were 5 years ago; not today; not tomorrow.

  166. Thank you for sharing your story. I'm 29 and two years ago my husband and I moved in with my parents to help my mother take care of my father who has Alzheimer's. I can't imagine the struggle of taking care of both parents. I'm praying for you.

  167. This is a clear example of the incredible amount of unpaid work by women that benefits our society. This kind of work destroys womens' health, lives and careers. As a society, we should be financially and emotionally supporting women who do this kind of loving care. We should also support and encourage men to take on their share of the responsibilities. Although Elizabeth seems to have a tolerant husband, we don't read about him providing any direct help to her parents. Elizabeth apparently has other siblings, as well. Does she have any brothers who could help her to care for their mother?

  168. This comment is coming from a woman. My brother and I worked as a team and my husband did the vast majority of the work when it came to his mom. His sister just did not get it or did not want to.

  169. You didn't read far enough. She does have siblings who help, and her husband obviously helps, too - but I suspect he also needs to earn money for this household. Just a wild guess.

  170. Thank you. As a female I get so tired of women talking about how they 'have to' do everything. It's not as gender-specific as some women like to make things out to be.

  171. This is so sad, it makes me cry.

  172. Who is going to take care of Elizabeth?

  173. been there

    twice

    all I can say is, when death comes
    it's a joy

  174. You are my hero. God bless.

  175. God bless you. We're dealing with a similar situation with my mother-in-law. There are no easy answers.

  176. I take care of my granddaughter, and my daughter who is disabled. Women do this because if they do not step up, everyone falls into ruin. Yes. It would be good to have all the assistance available and more. It would be good for the human race if individual families struggled with the inequality and women became equal partners in compassionate care.

  177. "Women do this because if they do not step up, everyone falls into ruin."

    I posit that women do this because many of them wrongfully 'believe' that if they do not step up, no one else will. As long as women think and act this way, they create their own realities. Others (i.e., men) observe certain women in the family always taking it upon themselves to 'do everything', and so they let them.

    I witness far too many women acting this way, and then grumbling out the other side of their mouths about the very situations they put themselves in. That's not to say that there aren't some individuals in families (both male and female) who are simply selfish or don't help out much. But in many other instances, it's the women who are creating the very scenarios they espouse to resent 'falling to them'.

  178. It was obvious that my beloved Nancy, wife and friend for 63 years, was sinking into full dementia; I had anticipated this and selected an excellent full CCRC/assisted living venue here in Saratoga, California.

    She had many other health issues as well and they all conspired to take her away, peacefully one night in hospital, with me and my son at her side last July.

    So I never faced what you have faced and done so remarkably beautifully. If there be a Heaven, Lady, there will be a golden chair there just for you.

    Bless you, madam...bless you.

    Nick Fortis 86 managed lung cancer

  179. I praise you for your dedication to your parents, and the stress this must cause to your marriage. I must say though, that from experience with my own mom, that if my siblings and mom were to have a safe happy quality of life, we needed to put her into assisted living. Is there an adjustment? Yes but she has been there for a month now and seems so much healthier, eating better, taking meds correctly and most important socializing and talking more. Perhaps I am selfish, but my sisters and I felt that we could not give her the care she needed and keep both our sanity and our own quality of life. My mom also did not want us to change our lives to take care of her full time. Financially she is about to afford this for a few years, and is in a facility that has Medicare beds, so she will age in place and never have to move again, only to a shared room. I wish all on here the best during difficult and such sad times as we realize our own mortality thru our parents.

  180. We had the same experience when our mom went into a home. She did much better there, looked better, was cleaner, made friends (as best she could) with others there. My mom had no money, thanks to my unscrupulous brother cleaning her out, but the care home was still very good.

  181. Thank you for sharing your story, Elizabeth, with all of its heartache and joy and the weary, lonely places in between. It brought tears to my eyes and inpiration to my core. If and when this tragedy comes to my parents or my husband, I vow to find the courage and determination that your love has borne and carried. I wish for you and your husband strength, solace, and unity. Godspeed...

  182. You're lucky you were able to get a day program and a grant. I did not get a penny or any help for my mother that was not paid for. Two day programs in the area rejected her - one, because she cried the first day she got there. So we wound up going through what was left of her savings. She had already been scammed out of most of her savings, courtesy of the US Postal Service. Her lawyer never told me that I had power of attorney all along - so we lost probably tens of thousands before I was able to stop the mail. She'd go through more money in a week than I made in two weeks. She'd harass all the local shopkeepers until I finally had to take time off work to try to stop her. I was able to get intermittent family leave, then pay for in home day care which was more than my salary. When I worked at home, I was still docked for vacation and sick time. I was lucky, most people who are unpaid caregivers lose their jobs. In the end, I only got 3 days of hospice care for her, even tho' I had requested it a week before she died. After her death, her lawyer claimed not to have a signed will for her - which I later found. We ditched this crook, and found another. I had people go through the house twice, for tax reasons. Then another time, for insurance. Quite a few home insurance cos. dropped me. I got only $3700 in life insurance, accompanied by a threat letter. Her funeral and burial emptied my checking acct. This is only a tiny piece of this long story - I could write a book.

  183. I am so sorry. Many seniors get scammed. The Postal Service will get involved via the Postal Inspection Service. But, since you did not know of the power of attorney, it would have been hard for you to cut off mail. Many get scammed by mail, phone, Internet-scams in which "grandchildren" begging for money and the people clean out their accounts to help their supposed relatives; phone scams supposedly from the IRS; Internet scams of all types. Unfortunately, federal legislators do not see it as critical that they adequately fund programs to address this. Other scams--abuse by unscrupulous contracters who have seniors sign huge contracts for work they do not need or want--are regulated at the state level.

    There are sources of information available, including through area agencies on aging, but they may not be adequately funded or overwhelmed. Medicare-covered hospice care is both underutilized (people do not ask for it soon enough) and more tightly controlled than in the past because of abuses.

    Plus the burden for getting help still falls mostly on family. It is so much harder if the senior has dementia rather than acute illness. Dementia creeps up; slight forgetfulness may be dismissed as part of aging until symptoms cannot be ignored. You deal with a disorder affecting the totality of functioning including the ability to make decisions. In many ways, dementia is unique and the always difficult process of seeking help is magnified many times over.

  184. God bless. As of Monday I will be officially unemployed because my leave has run out while taking care of my Mom who was recently diagnosed with frontal lobe dementia. After last night I've had a total of around 15 hours sleep all week, not totally sure...I'm so exhausted I probably got the math wrong. Last night at around 4:30 AM I had the similar experience of begging my mom to go to sleep. Its amazing to me how so many people are in similar situations.

  185. Do you have any resources to help with emotional and physical support? A council on aging in your area who can assist with resources on how to manage this situation?

  186. What happens to your life at this point? You cannot remain without health care or financial resources. You cannot physically or psychologically keep this up. Your mom will be in better hands with a paid staff. If she could make that decision she would not want to see your life and health fall apart.

  187. If you don't care about your own health for your own sake, what will happen to your mother if you collapse - if you have a heart attack or a nervous breakdown or you have an accident due to severe sleep deprivation? Who would look after mom then?

  188. Speaking to those in their forties and fifties; are you going to do this to your children and grandchildren? I certainly am not. Live your life now like you know you are going to die and recognize that those last few years are not something to cling to at any cost.

  189. And you darn well better financially plan for assisted living etc!

  190. Hey Elizabeth if you see this, look into weighted blankets - they help with anxiety and increase melatonin and help people sleep, I am convinced it would cut way down on the number of times you would have to get up in the night. It would possibly help them sleep better so they wouldn't get up as frequently. Best of luck!

  191. I've been there. It's horrible on so many levels. Make arrangements to step away for brief periods if at all possible. You only can give what your strength allows you to give. When all is said and done, you will be thankful you did what you were able to do.

  192. Might I say to all the commenters that are saying 'I don't want my children taking care of me' ? I'm sorry it's not going to be your choice. Or at the very least it will not be as cut and dried as you may think.

    We the children may try to follow through with medical plans that were discussed or we may just do what we feel we need to do. In our case my parents felt the same as you do. The 'problem' is the hearts they built couldn't follow through with those plans and this child very glad that she was with them to the end.

  193. Well, you are right that we cannot control the future, and we cannot control what our children may do. All we can do is tell them our wishes, and let them know we do not consider them obligated.

  194. Wholeheartedly agree. I know my parents never wanted to have to move in with me. Their minds were sharp, but their bodies failed. My dad has been with us 7 years now (mom died in '12) and he still is apologetic about needing a doctor appointment or whatever. He is sorry he ended up with us because of what he thinks it is doing to us. But it is easier for me to manage his care in my home while working full time, than it ever would have been to manage it in an outside facility. And they were both in a nursing home for a short period (6months), and while I'm sure there are worse - I'm also confident he wouldn't be alive now, had I left him there. We manage. We'll manage as long as we can - he's 89 and his family is very long lived - so maybe 10 years more (if we're lucky!). I am so glad I have been able to do this for dad, and I have no judgement for people who make the decision that they can't. For us, this was the right decision.

  195. When my mother developed Alzheimer's and was approaching the point of not being able to live alone I was conflicted about when would be the right time to move her to an assisted living facility. I lived in a different state and was raising two children as a single parent and had no siblings. Moving wasn't an option for me. I called the Alzheimers Society and asked them. The person I talked to said that it was important to move the person when there short term memory was still good enough that they could remember that this was their new home. Otherwise, I was told, that the person can spend the rest of their life demanding that they be taken home which causes them increased anxiety and anger.
    The day I moved my mother she was so angry that she tried to hit me and kick me. But, miraculously at about six weeks she started telling me how much she liked it there. For the first time in her life she had nothing to worry about. She had made friends, participated in activities and was eating and taking her medication regularly. She live another 7 years and, I have to say, they were very pleasant, peaceful years for her.
    My husband had a different experience with his first wife who had early onset Alzheimers which started at age 50. He was her 24/7 caregiver for years which almost killed him. He moved her too late and she spent the rest of her life angry and upset, wanting to go home.
    While keeping a loved one at home may seem the kindest way, it may not be the best way.

  196. I've been living with and caring for a relative with Alzheimer's for years. I'm so miserable that I pray that I die before morning every night. I wouldn't wish this on my worst enemy.

  197. Is there no way to put your relative in a care home? They're really not awful places - I mean, shop around, but you can surely find a good place. My mom was in a small place, on Medicaid, not private pay, and it was actually very nice. They took good care of her there.

  198. Her POA won't agree to it.

  199. Jane, you need help finding another place for your relative, who would certainly not wish this on you, either.

  200. God bless you and your husband elizabeth. Your parents are so lucky to have such a caring, unselfish daughter and son in law.

  201. all I can say is I admire you I couldn't do it and i work in a aged care facility as a carer

  202. The Adult Day Centers are so helpful, especially if they offer transportation. I would like to learn more from Paula Span's column about these centers across the country and trends in expanding access and financial aid to pay for them. Also, I felt guilty when my mother had to be put on antipsychotic medicines but I knew she had to have them. She became so aggressive and loud. She couldn't help it but she had to be sedated. I hate it when people say the antipsychotics should not be used, because sometimes that is the only thing that works.

  203. God bless this author and her family. My sister and I--but mostly my sister--are dealing with our mother's descent into that mental abyss called Alzheimer's Disease. I live 3,000 miles away and co-own a small business with my husband, so the best I can do is come out quarterly to spend a week or two to give my sister some respite. It is frightening sometimes when your mother does not recognize you as her child, imagines all manner of strange things and is willing to swear to those hallucinations, loses her ability to do the smallest personal care tasks and can get into a lot of trouble but is totally unable to be responsible for anything.

    There has to be a better way for the afflicted . . . who will someday also be ourselves.

  204. These types of situations have serious emotional, health, and economic ramifications for care-givers. However, what our policy makers fail to realize, is that the economic consequences also impact society as a whole. Due to lack of decent care facilities in many area, family members (more often than not women) are quitting their jobs to become full time care-givers. This means they are not employed in the general economy, and are not earning money for their own retirement. Additionally, if a care-giver has given up employment, they probably no longer have health insurance for themselves, which means if they were to fall ill, it would mean additional financial hardship. It seems it would be better for government to improve the options for care available for seniors, so that people can remain gainfully employed, and earning money for their own retirement and health care. Nearly everyone who ends up in a care facility will be on Medicaid, due to the astronomical cost of nursing home type care. Families try to avoid care facilities for many reasons, including the ones noted by the author of this article. However, as the costs of caring for the increasing numbers of elderly grows, we as a society need to find better ways to help families deal with these situations. Sadly politicians do not seem very interested in addressing these types of problems. We are reduced to listening to candidates compare their private parts instead of working on solutions for real problems.

  205. Our mother showed signs of dementia at age 80, it runs in her family. We four sister are spread across the world from Europe to Florida to the Midwest and California, no one was in the position to keep mom at home.
    Mom is in a wonderful public senior home 2 miles from my sister. My sister visits Mom nearly every day. We are grateful that good professional compassionate care is there for Mom 24/7.

    The kind and professional folks at Mom's assisted living center do a better job than we could do. Because they are trained and have some emotional distance they are good judges of changes in Mom's needs and behavior.
    It is my observation that too many people overestimate their ability to care 24/7 for family members with dementia. They also entirely underestimate the quality care available at so many assisted living homes. This is not the 1960s; high standards and well trained professionals are available. Do the homework and find the right home for your loved one. A simple first test is how does the place smell when you walk in the front door. Proximity is essential.
    There is no need to sacrifice your life for the care of a person with dementia.
    If the loved one with dementia could thank you they would. They would be thankful you did not shut you own life down, sacrifice all your time, to them.

  206. My dad is in his early 60s but often forget to turn off the garage door or cooking fire. It is the cooking fire part that concerns me the most since we live together in the same house and use a gas stove. I hope this is not a sign of early stage dementia. Me and my friends have recently began working on a project to alert people if they forget to turn off cooking fire at home. If this also concerns you, please sign up at our website at www.tochtech.com and we can keep you updated of our progress.

  207. Does leaving on an electric stove create less danger than that of a gas stove? If so, then it seems it would make sense to replace the gas stove with electric if possible....

    Or...is there a way to add some type of 'child-proofing' to the stove so that your dad can no longer ever turn it On? ...and that he can only use say the microwave?

  208. After my 90 year old mother began showing clear signs of dementia that was confirmed by our GP, I researched this disease. I was astounded to learn that, in 2013, ALL G8 Health Ministers signed an agreement to create National Strategies for Dementia committing to finding a cure by 2025! I was equally astounded to learn that although Canada's Health Minister (Rona Ambrose who is now the interim Leader of the Opposition), was a signatory to the agreement, and yet voted AGAINST a private members bill for a National Dementia Strategy and the proposed bill was defeated by 1 vote. Currently 750,000 Canadians suffer from Alzheimer's or some form of Dementia, costing the Canadian government 33 BILLION dollars a year - even with substandard care and research. Forecasts for 2030, 1.4 million people will be afflicted, and by 2040 that cost will balloon to 300 Billion a year. Dementia is one of the top 5 leading causes of death and yet it is the only one for which there is no prevention or treatment. I call on everyone who is reading this moving personal story to demand better from their Member of Parliament or State Representatives. According to UK researchers, this is a disease - and that it can be cured! Check this Ted Talks presentation:
    http://www.ted.com/talks/samuel_cohen_alzheimer_s_is_not_normal_aging_an...

  209. Obviously, Ms. Wolf and her husband have the right to choose to spend their days this way, and I admire their compassion, commitment and energy -- and marvel that Mr. Wolf is willing to sacrifice (though he might not choose that word) years of his life to his inlaws. My opinion, however, is that Ms. Wolf's father has hardly any quality of life and her mother has none. This story yet again raises the question none of us seem to know how to answer: should we be keeping shells of people alive? And should family members feel obligated to upend their lives for their ailing loved ones, especially when their charges' minds have failed to the extent that they rarely or no longer experience joy? I can't imagine that any decent parent would have a reaction other than horror at envisioning a son or daughter giving up their prime years -- or more than a few months at any age -- to become round-the-clock aides. I'll drill it into my son's head, as my parents drilled it into mine, that, God forbid, should my husband or I be subjected to the fate that befell Ms. Wolf's parents, we do not want him under any circumstances to become our caregiver or to feel a moral compunction to keep us in our house. With people living longer to begin with and with medications stretching out our lifespans without any regard to whether we're actually living or might as well be zombies, everyone needs to have an end-of-life directive.

  210. After caring for my mother for three intense years, I tell people that if I ever have her condition, set me outside to target shoot with my 357 magnum, and maybe I will have an accident.

  211. This is exactly our decision after caring for my MIL for 14 months. See the book, Final Exit to make a plan for your own "exit" while you can.

  212. Thank you for expressing what I think many of us were thinking while reading this article. I have grown children; I would never want them to sacrifice their independence and financial futures if I suffered from dementia or was bedridden and in pain for years. The difficulty is that people in these conditions are not terminally ill;they either cannot make their own decisions or are not physically capable to to so.
    It is a difficult ethical area, and we need address this as modern medicine keeps those alive who are only shells, while depleting their finances.

  213. Oh Elizabeth, you are a saint! So is your husband! This is such an emotional and difficult situation, not one parent but two! As a nurse who has taken care of elderly patients with dementia I know how physically exhausting and emotionally taxing it is. Not to mention the paper work, the endless phone calls associated with health insurance, medical care and home health care. The list goes on.... This is why families can't do it anymore in their homes. Yet this is what we all want, to be able to stay in our homes to the end. It seems so simple but it's all so complicated. If your parents were able they would be so grateful and appreciative of what you are doing for them. But don't forget to take care of yourself along the way.

  214. "This is what we all want, to be able to stay in our homes to the end." Many of the people who take an objective early detection test in their doctor's office (e.g. CANS-MCI for detection of the first signs of mild cognitive impairments predictive of Alzheimer's) do so because they intend to die before it gets too bad. Many of those people do not want to be a burden on their families. But voluntary euthanasia is illegal throughout the United States. Some guidance may be obtained by organizations such as the Final Exit Network. This leaves mentally competent people with Alzheimer’s who want to maintain control over their dying in the position of taking action while they still can or eventually losing capacity and relying on others to make treatment decisions that will result in a natural death at the first opportunity. Having a stash of the right pills is an option. Since most people don't have the will or the preparation in place to choose death, the single most important decision people with Alzheimer’s make is naming the right person to be their surrogate decision maker in a Durable Power of Attorney for Health Care. A solid Advanced Care Directive is also very important.

  215. It bothers me greatly that our govt tells us we cannot end our own lives (or that of a loved one, and when they'd made their wishes known when they were of sound mind) but yet we are allowed to do exactly that for our pets.

    Only once have I been in the presence of a person I knew to have Alzheimer's, and it was painful to witness. My mom and I were visiting with an uncle in another part of the country. He'd remarried about ten years prior, and I'd never met this wife, who was now in a nursing home with Alzheimer's. (My mom however had previously met her.)

    We went to visit her at the nursing home. They wheeled her into a room and the four of us sat and 'talked'. My uncle brushed her hair and talked about nothing really. It didn't take me long to realize the level of her illness based on the type of small talk my uncle was engaging in with her, the vacant look in her eyes, etc. I did my best to try and 'stimulate' her mind, making my own small talk about how long it had been since my last visit to the state...some of the things my mom and I were doing during our visit etc. At one point she looked at me and made eye contact but that was the extent of it. Our ten-minute visit felt like an eternity, and at one point I had to turn my head as the tears streamed down my face, and this for a woman I'd never met before. To think that this was her level of existence, 24/7, and for so many others like her? She was a shell of a person and nothing more.

  216. Thank you for the information. After having to sequentially care for both of my parents (had to sue my dad's relatives after one had him sign over property) you have provided information this "only child" sorely needed.

  217. My widowed mother began showing signs of dementia around 2003. She was living with her bachelor brother on the old family farm in Massachusetts. They were both in their 80s, and he just thought she was being silly. My mother was a domineering person (a trait that never ended to the end) and there was often arguing. I lived 2 hours away in Vermont, took over her finances, and helped when she needed to get to medical appointments.

    Finally, in early 2011, she got so bad that the elderly brother could no longer cope. I am an only child, and my mother came to stay with me full time. It thoroughly disrupted my life, and forced me to give up all my employment. The entire time she was with me, she never understood where she was, or why. I will not go into any more details, but after three years she stopped walking, which resulted in her going into a full time care facility, where she was even more confused. She died in panic after six months there. At age 96.

    The experience aged me six years in three years. I cannot imagine what it would be like to care for two parents, who from the sound of it, still have a long way to go. At least it sounds like there are some support services in New Jersey. I had none.

  218. RM, This kind of caregiving experience ages most of us very quickly, even when we are only caring for one person. But Ms. Wolf is only 35, so she and her husband -- I don't know how old he is -- may have enough resilience to recover their lives after her parents die. They may also be young enough to pick up their careers or start new ones then. For people in their fifties and sixties, that is not usually possible.

  219. A year ago, my dad died of Lewy body dementia, just a few weeks after we finally tried to commit him to a home. His dementia and behavioral problems were so severe that the predominant feeling in the family after he died was relief, with a fair amount of regret over the years mom had spent trying to care for him and refusing to get help. While it makes me sad to see the pictures of Elizabeth and her husband caring for two people who no longer fully understand who they themselves are, this is her choice, and I respect that. If you have demented parents, make your own choice, and try hard to let it be one that you will not regret.

  220. It is useful information, but how sad to show the photos of the unknowing parents. They cannot give permission.

  221. I agree. Although the photos added to the story, some of them were intrusive. I thought the picture of Mrs. Brood in the shower was especially so.

  222. I don't get this notion of 'invasion of privacy'. What does that mean exactly? The parents don't know what they don't know or realize, so where is the concern for 'privacy' coming from? And as for the mention of the shower photo by west-of-the-river, it seems to say more about that person and likely hang-ups about the naked body. It wasn't even like you could 'see' anything.

    More than anything, these photos show the reality of what this daughter must endure on a daily basis. It pains me to read about and see all the work she must do, which in turn makes me angry that our country is so incredibly inept at supporting its own citizens in the management of healthcare and family.

  223. @ Avina, Although you do not "get this notion of a right to privacy" for dementia patients, that right is recognized legally. An even broader right to personal dignity is observed by the best long-term care facilities. Many facilities strictly enforce a rule requiring that a person's body be visually shielded while getting personal care. This rule applies even if a "naked body" is not visible or if one cannot "'see' anything." If a care worker allows a stranger to observe a patient in the manner that Mrs. Brood is shown in Photo 5 (at the sink) or 10 (in the shower), that worker would be disciplined. So I am not the only person who thinks that people who "don't know what they don't know" are still entitled to privacy and also to personal dignity.

    Ms. Wolf had a legal right to waive her parents privacy rights and I assume she did it after careful thought. As a caregiver for a dementia patient myself, I would not have authorized many of these photographs. As for your ad hominem accusation, you are entitled to your opinion.

  224. Does this mean I should be happy that my mother died accidentally at age 52 or my dad of a fall at age 63. My wife's aunt was the same age as my mother and she died at 97 with dementia and I wish my mother had lived as long.

  225. Multiple disabilities can complicate the care. My mother was deaf, a wonderful lipreader, but very limited in her communication with caregivers except me. She also was losing her sight to macular degeneration. We managed well until the dementia interfered. She was lost without me. It was not possible to find caregivers who could comprehend the difficulties of being deaf, blind and confused. I think we made the right decision to move in together. It had an impact on my husband, me and my teenage boys but we all grew into a clear understanding and compassion for her. My family did better than I did. I think the primary caregiver will face struggles with grief, frustration and guilt no matter what. There is no perfect solution.

  226. Who are you? A wonderful and kind and caring daughter who has a heart of gold.

  227. We did this for 14 months for my widowed mother in law. In December we moved her into a Memory Care facility, where they have the structure, programs and socialization that we could not provide.

    Is it the right thing to do? To give up some of one's most productive years to care for parents whose live are "over"? We did what we could, and are glad we did so. But we couldn't continue. Fortunately, family finances allowed us an option.

    If you are caring for an elder parent, or considering such, you're not alone. A study by MetLife Mature Market Institute & National Alliance for Caregiving, says 10 million people are caring for their aging parents. The number of caregivers has tripled in the past 15 years. Caregiver groups say Congress should do more with tax credits and SS benefits to help $$$ support those who choose to care for elders – so make sure that your elected reps know your concerns. Informal caregivers provide UNpaid services that would cost Medicare $375 billion/yr! Yet family caregivers often find their own lives in crisis after caring for an elder, and putting their careers, health, other family relationships, and interests on hold. Www.Agingcare.com, has caregiver forums where anyone can ask a question, answer or just vent. It also offers many helpful links. Ultimately, all we can control is our own response to the challenges of aging, and try to ensure that we won’t be a burden to our children or other family members – by planning ahead NOW.

  228. "Informal caregivers provide UNpaid services that would cost Medicare $375 billion/yr! "

    This is an example of what makes me so angry about this country. Who is our government to tell us what are 'appropriate' ways to manage our own health or that of family members? Our government won't hesitate to pay for costs associated with putting ourselves or family members into 'facilities' (some of which are quite bad), but yet won't provide us with this same level of funding to use as we see fit, for in-home care services (i.e.,, so Eliizabeth in this story could use the money for a home healthcare aid a few hours per day...or to help her with the housework or food shopping she clearly has no time for?...or so she can get herself acupuncture which in turn helps Elizabeth to help herself, ergo her parents)?

    Similarly, our basic medical insurance plans think nothing of covering partial/all costs for this prescription pill or that one, but if you prefer homeopathy, or a therapeutic massage or acupuncture instead (as a way to try and tackle your particular health issue), 99% of medical plans will not allow for any of that. So they essentially dictate to us the manner in which we are to approach our own healthcare. It should be our decision, not that of health insurers and not that of the government.

  229. She is a hero in my eyes, a completely unselfish person, I admire that.

  230. This is a beautiful, heartbreaking article that hits so close to home. I think, like so many people, I had no idea how devastating dementia or Alzheimers could be until it struck a loved one (my mother). Six months prior to her Lewy Body Dementia diagnosis she went to the gym everyday, attended her weekly Great Books class and read the Times cover to cover. My father refused to believe there was no cure for her diagnosis, and refused to get help in caring for her. That all changed the night I got a call from a police officer who responded to a 911 call at their house; he found my father unconscious, from a stroke, in the foyer, and my mother, in a pool of blood, lying in the kitchen (she had fallen and struck her head).

    My father passed away two weeks later and my mother now resides in a dementia care unit. She no longer recognizes anybody and she is unable to walk or feed herself.

    Many days I feel like a failure for not being my mother's primary caretaker but I know, objectively, I would not last more than a few days (and don't have the physical strength to lift her out of her wheelchair to use the restroom). I feel fortunate our family has the funds to pay for her full time care and wonder how families without those funds get by.

    And I know I'm not the only child of a dementia patient who wonders if I am going to inherit this terrible disease.

  231. While this daughter is an amazing example of kindness and charity feel so awful for her parents. What quality of life do they have? I wish we were more focused on dying with dignity then prolonging pain.

  232. Her parents have Alzheimers. She can't possibly plan for them--and/or make it possible for them--to "die with dignity"...unless you're suggesting euthanasia?

  233. I totally agree that if the caregiver herself (or himself) falls ill after quitting his or her job in order to care for a loved one with Alzheimer's, it's a no-win situation for everyone. Everyone agrees: something must be done, but until there are other options for caregivers and patients alike, we'll all be throwing up our hands. That's 1 reason I wrote my book about this; it gave stability to an otherwise chaotic situation, with our income reduced and my Alzheimer's-ridden mom running out the door to meet her pretend friends.

  234. Elizabeth, the loving care you (and your husband) provide for your parents is so admirable. My mom, too, has AZ and she is now living in an outstanding residence receiving full-time care. She participates in many activities, ranging from "cooking" classes (forming peanut butter into cookies), music and art therapy, sing-a-longs, gardening, and walking ~ the residence is even getting a puppy soon for residents to care for and walk. My dad was no longer able to meet her vast physical and mental needs. It got to the point where I became more concerned with the toll on his health. I knew that my mom needed to be in a residence in order for my dad to (hopefully) have a few good years left. I would urge you to find a residence for your mother, at the very least. Mercifully, my mother's memory is impaired enough that her transition was virtually seamless. She has put on weight, is sleeping well, getting nutritious meals, and importantly, is not isolated at home. She has lots of "friends" at her residence, skilled and nurturing caregivers, and every day is filled with a host of activities. This level of care cannot be provided by a single individual. It has been a blessing for her and my dad. Please consider placing your parents in a residence. I honestly believe the skilled care my mom is receiving now will allow her a longer, fuller, and more dignified life.

  235. Elizabeth & Casey- God Bless you both. You are doing a great job. My father has Alzheimer's. I too, have a very supportative husband. But there are times that emotion overwhelms me. It is so hard to see my father with this disease.

  236. this seems a tremendous burden on caregivers - especially family members not only dealing with 24x7 care requirements, but also the loss of the loved one they knew - grief and loneliness in the face of enormous exhaustion.

    I think this is a failure of the nuclear family - as increasing affluence tends to increasing individuation and isolation - you don't 'need' other people to survive - in times of personal stress people can find themselves suffering alone - when they would be better off having that problem halved - or removed - by sharing it with others.

    I know profit-driven care institutions tend to cut services leaving the vulnerable uncared-for and abused - but I think there should be a middle ground - community-driven not-for-profit multiple-carer environments.

    e.g. I once sold real estate and visited a house for potential sale - a young Vietnamese woman let me in - there was a baby - after a minute she said 'I'm leaving' - without the baby. I was incredulous - 'who's going to look after the baby ?!?!' - she said "it's my sister's - she's at work - someone else will be along in a minute" - I asked "so who's responsible for the baby ?" - she said "whoever's in the house at the moment"

    I thought fantastic - mother has a full-time job - enjoys the day unstressed, baby stays at home, cared for by a series of relatives who take turns enjoying and looking after the baby - mum returns home at the end of the day - to enjoy fun time with the baby ! Everybody happy !

  237. But she left the baby.

  238. You have my deepest sympathies. Your parents, especially your mother, were too young for this.

  239. Elizabeth, you ask who you are if you take your dad from his home? How many people get to live in the same home for 40 years? He's been lucky. And what do you think of other children who do put their parents in facilities? Who are they? Are they lesser than you?

    Would you do this to your own daughter? I feel you are risking your own physical and emotional health and at such a young age. Surely your parents would not want this if they were in their right minds. They would want you to live your own life.

  240. She already wrote, "I would never judge the people who do, but I couldn't." Why would you ask her if she thinks "they" are lesser than she is? Try not to put her in an even more difficult position by making her feel as though she were a judgmental person for doing what she believes is best for her parents and, ultimately, for herself. She feels better doing what she is doing: who are you to try to make her feel bad about her choice?

  241. Maybe it is just that, if I were the mother, I wouldn't want my picture in the NYT during this stage of my life.

  242. A vivid and poignant account of the love of a daughter challenged by not one but two parents undergoing decline. When it came time for facility, listening to the desperate appeal of her father, she brought them home. This doesn't happen often enough - most adult children begin with the assisted living facility while shopping for nursing homes; are counseled to leave the parents there and hope for the best. Nursing aides, terribly underpaid, often resign themselves to the institutional neglect that is so palpable when you enter such settings - rank with the stench of urine and peopled by sedated patients in wheelchairs. When the author's parents pass she will have memory of loving them in return for their tender care of her in childhood, a deep and lasting feeling of completion, that she did her very best to bring dignity and attentiveness to their last fading days. For the millions of childless adults in this country rapidly aging toward inevitable loss of agency, there will not be such endearing daughters at the ready to provide tender loving care. Legal assisted suicide will soon become the next major civil rights movement in the U.S.

  243. Yes, rbwphd, geriatricians are desperately needed. They and family physicians are equally, if not more important, than other medical specialists. They are a family's resources for the most of our health care needs during our lives and should have adequate training opportunities and commensurate pay with other specialties, especially under Medicare.

    When families discuss final health care directives they should include how they feel about assisted living and their expectations for care. We have a sad history in this country of not wanting to realistically face health care and dying, until they are upon us, as if we might jinx ourselves in doing so.