Gene Wilder’s widow on his Alzheimer’s battle: let’s not forget the caregivers

Embed from Getty Images
Gene Wilder passed away at 83 in August of 2016, which is surprising as it seems like it wasn’t that long ago. In their statement about his death, Wilder’s family was candid about the fact that Wilder suffered from Alzheimer’s, but said that they felt lucky as Wilder still recognized his loved ones and retained his personality up until the end. Wilder’s widow, Karen Wilder, has written an essay for ABC news about her experience loving and caring for the late comic during their 35 year marriage. Karen writes poignantly and in a matter-of-fact way about the toll it can take to care for a loved one with the disease. She describes sweet moments with her husband, his parting words are particularly meaningful, along with anecdotes about day-to-day life caring for him. It wasn’t easy for her, and she wants to bring awareness to the trials of caregivers. She also received help and advice from the Alzheimer’s Association, which she reached out to while caring for Gene. Karen wants people to remember the loved ones who care for Alzheimer’s patients and to understand that they’re suffering too. I can’t do justice to her essay but I’m excerpting some parts below, with more at the source.

I was determined to keep Gene with me –- in California and, finally, at the home we’d made together in Connecticut. We still managed to have some good times and to laugh, even at the ravages of the disease that was killing him.

One day, when he fell on the patio and couldn’t get up, I maneuvered him over to the edge of our pool and floated him to the other side, where there were steps and a railing to assist him. Another time, after struggling for twenty minutes trying to pull himself up, he looked out as if he was addressing the audience at the Belasco Theater, a place he knew well, and said in his best Gene Wilder voice, “Just a minute folks. I’ll be right back.”

But there’s another particularly cruel aspect to the disease of Alzheimer’s, because in addition to destroying – piece by piece – the one who’s stricken with it, it ravages the life of the person caring for its victims. In our case, I was that person.

I am grateful that I knew to reach out for help from the Alzheimer’s Association. When I did, I learned some alarming statistics from them. One in three seniors dies with Alzheimer’s or another dementia. That means, if a mature couple invites two couples over for dinner, one of the couples could face Alzheimer’s.

Then came the biggest shocker: 40 percent of Alzheimer’s caregivers die before the patient according to a study done by Stanford Medicine — not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.

Gene died fifteen months ago. I was in the bed next to him when he took his last breaths. By that point, it had been days since he’d spoken. But on that last night, he looked me straight in the eye and said, three times over, “I trust you…”

It is a strange, sad irony that so often, in the territory of a disease that robs an individual of memory, caregivers are often the forgotten. Without them, those with Alzheimer’s could not get through the day, or die — as my husband did — with dignity, surrounded by love.

[From ABC News]

That really touched me. We’re so lucky in my immediate family that we haven’t faced this disease, but I know people who have and it’s devastating for the caregivers especially. I can’t imagine what it’s like to have a loved one not recognize me and to become someone I don’t know either. It must be so difficult to go through and I didn’t know that statistic that 40 percent of caregivers die before the patient. Karen mentioned that the Gates foundation has donated $100 million to Alzheimer’s research, which is the largest donation ever to the cause. We can do our part by calling our friends who are caring for Alzheimer’s patients and asking them if they need anything – a trip to the store, a visit for tea, or just someone to listen.

Embed from Getty Images


Embed from Getty Images

You can follow any responses to this entry through the RSS 2.0 feed.

56 Responses to “Gene Wilder’s widow on his Alzheimer’s battle: let’s not forget the caregivers”

Comments are Closed

We close comments on older posts to fight comment spam.

  1. Laura says:

    I’m not crying. Nope, not crying at all.

    What a beautiful letter & how right she is. More love needs to be shown to the caregivers of our society.

  2. nellie says:

    Thank you for posting this. We often forget about the caregivers and their struggles. It is mentally, physically and emotionally draining to care for someone who has Alzheimer and/or dementia. It really takes a toll on the family.

    • Christin says:

      After my parents passed, I had to deal with disappointment and anger at a couple of close relatives who ignored how serious our situation was. They acted as if my home bound parents (with severe RA, Parkinson’s, etc.) could run out and play basketball if they wanted.

      It was maddening how some could not understand obvious limitations. Thankfully there are people who want to be supportive.

      Some who say the least need the most help, too.

    • Susannah says:

      It’s very often financially straining as well, which is so stressful.
      My grandmother was cared for by my aunt for quite a few years until she couldn’t cope with the strain anymore, even with my dad’s help and the grandkids too. It was just too difficult physically to help her to the bathroom, for example.
      When it was decided to put her in a nursing home it was incredibly stressful emotionally for everyone but also financially as a lot of my grandparent’s finances were depleted caring for my grandfather. What’s left of my grandparent’s money and insurance is paying for some of her care but my parents and aunt are paying for the rest of it and it’s financially straining. We wanted her in the best care available so she’s well looked after but senior care is very expensive and another reason we need to have better healthcare in this country.
      We always seem to find the money to wage war (2.4 trillion so far for Iraq and Afghanistan) yet seem to think healthcare needs for our most vulnerable citizens is far too expensive for the wealthiest country in the world. It’s a tragedy that our priorities are so out of whack compared to the rest of the world.

  3. Lightpurple says:

    I just want to hug her. She went through so much taking care of him. We do need to take care of the caregivers.

    When he died, I felt so bad for Karen. For her loss, yes, but also because so many dismissed her with comments about how he was reuniting with Gilda. Karen was with him for 35 years. Her part in Wilder’s life should not be dismissed like that

    • Ponytail says:

      I don’t think it was 35 years, even if it says so in the article above – they married in 1991. Otherwise it would mean they were together while Gilda Radner was still alive and that’s not a nice thought.

    • FLORC says:

      IMO It’s a true test of love to care for your partner as their mind and body fail slowly.
      Ebert’s widow Chaz. Pryor’s widow Jennifer off the top of my mind.

      Painful, but dedicated.
      I’ve struggled with my own family. It’s very easy to becomes frustrated and angry with the person for forgetting simple things. It’s painful. You don’t want to accept that reality.

      So, hats off to all those that can do this. I’m in awe of them

  4. Ginger says:

    He was so wonderful, and so very lucky to have a partner who cared for him until the end.

    Tbis post hits me hard. My father cared for my mother as cancer slowly killed her, making sure that she was able to die in her own bed, surrounded by loved ones. The toll it took on him resulted in a 40lb weight loss…he was skeletal when she passed. My sister and I helped as much as we could, but were no longer living at home. We visited on weekends to give him a break, but he was the one who was there every day.

    If you know someone who is a caregiver of a chronically or terminally ill person, check on them often, even if you are constantly rebuffed. Knowing that you are available and willing to help means more than you could ever imagine.

    • Carol says:

      My mom took care of my dad as he was dying from cancer. We tried to spell her, but he wanted his wife, not his kids to help. He told her once, “I am so glad you have the opportunity to go shopping and get a bite to eat and walk around the neighborhood, and you should do all those things but please don’t leave the house.” We all laughed, including my dad. We are dealing with my mother-in-law’s Alzheimer’s and two children with special needs, and my husband is exhausted and stressed. A friend lost her dad unexpectedly while he was caring for her mom with Alzheimer’s. Caregiver fatigue is real.

  5. Christin says:

    What she describes could apply to caregivers for a number of independence-robbing illnesses.

    Just like many others, I worked full-time while caring for two physically limited parents at their home. One was 90 percent bed bound. I am proud that I could help with their comfort and care, which was the big picture goal.

    They both passed two years ago, and I still occasionally dream about caring for my Mom (she was more limited). It’s a long path of not only grief, but trying to remember other parts of your relationship.

    • Mel M says:

      We haven’t had anyone in our family suffer from Alzheimer’s as of now but it is so heartbreaking to hear about. My sisters husbands grandmother is going through it right now and it’s just so painful for her daughters because she doesn’t recognize them and she’s turned into an angry person and it’s breaking their hearts.

      @Christin- Yes she is. My almost 6 year old has significant special needs. She doesn’t walk or talk and she’s fed via g tube. Caregiver burnout is a real thing. I get scared thinking about the future too. She’s getting heavier and heavier and it’s only going to make everyday life harder. She is my angel and I love her more than anything and don’t feel she is a burden in the least but yeah people don’t understand that you just can’t get up and run to the store or even just go out by yourself or with a partner because you don’t have anyone else to care for them. You don’t get a break, it’s 24/7. I’m basically home bound until my husband comes home from work or on the weekend. I can’t lift her wheelchair so I can’t take her anywhere. Hoping to get a wheelchair accessible vehicle one day soon but they are super expensive. Just this last weekend over the holidays was the first time we had gone out to dinner together just the two of us in two years. No joke.

      • Christin says:

        Mel M, you have my admiration. Your situation reminds me of my aunt and uncle caring for my cousin, who was bedfast and non-verbal for 15 years, due to a brain tumor. My aunt only trusted two people to stay with her so she could see a doctor or get a haircut. My aunt is now 85, and she is still a humble, beautiful person.

        I genuinely believe you will be rewarded someday for such selfless devotion. I do believe we reap what we sow.

      • B says:

        Mel M, you are amazing. Truly.

        My in-laws have a special needs child, and they decided to have more children besides the two (total) they have because they are worried about the burden of care that will fall to the typical sibling, in the event that they pass before the special needs child does.

  6. PunkyMomma says:

    Another aspect of this crushing disease (learned first-hand): when Alzheimer’s wipes the memory of your loved one, you lose a cheerleader. You lose someone (in my case) who remembered you from the day you took your first breath. You lose someone who knew the ins-and-outs of your heart and had your spirit, your heart’s desires, committed to memory. You lose someone who not only believed you, but believed in you, your dreams, your ability. You lose someone who knew you, warts and all, and still loved you unconditionally.

    It’s unbelievably difficult to watch someone you love waste away, in mind and in body, to this horrific disease. As you watch each piece disappear, the grief just grows. It doesn’t surprise me one bit that so many caretakers die before the actual patient does — years of continued grief and horror take their toll.

    • STRIPE says:

      I would also like to add a bit here that my family experienced: not only do you lose the person slowly, but in the beginning my grandma experienced severe paranoia. She told my dad how much she hated him and how he was stealing from her etc etc. not only did he eventually lose his mom entirely, but for months she hated him. It was devastating

    • Shambles says:

      What a touching, heartbreaking, beautiful, devastating comment. Hugs.

      *loud sniffle*

  7. Alarmjaguar says:

    My Dad had a massive stroke and my Mom cared for him for four years. We were very lucky that our family could afford help, but none of my siblings or I lived in the same town and even with help, it was a huge burden for her. She was in her 70s and it absolutely took a toll on her health. It was so sad when my Dad passed, but honestly, we were relieved for my Mom’s sake. All of this is 100% true.

  8. Stacy Dresden says:

    Wow. That made me cry!

  9. Jemimaleopard says:

    My mum was recently diagnosed with Alzheimer’s and this is all so true and incredibly touching xx

  10. elimaeby says:

    All four of my partner’s grandparents are suffering from/passed away with dementia or Alzheimer’s. My greatest fear is that I’ll be dealing with it one day, and it looks likely. My heart breaks for her completely. .

    • Milla says:

      My grandma died 10 years ago but we lost her 7 years before that. Her dementia got really bad and just seeing a person you loved and someone who adored you, slipping away, was pretty darn awful. And so sad. I still have no idea if i feel worse for my mum or grandma or me, cos she was my person. She was so awesome and than its like she left her body and spent years being someone barely alive.

  11. Jess says:

    All caregivers need more support. We all know it’s hard to be a parent to kids, but as such a parent I think it often seems harder to be a caregiver of an adult – any loved one struggling with diseases or disabilities. I’m watching my boyfriend’s dad struggle right now as he tries to take care of both his wife and special needs adult grandson and I worry it will kill him.

  12. Veroncia says:

    I imagine caregiver stress is an issue that’s going to get increasingly more public attention in the new few decades. As aging baby boomers succumb to physical and aging ailments, millenials will find themselves dealing with an unprecedented amount of stress from the emotional and financial labors of caregiving. Our generation is already struggling to catch up economically – adding a parent will failing health is only going to make that situation deteriorate further.

    • kay says:

      yes. all too true. i have an elderly friend of the family (a relative, really, but not blood, you know?) living with my family because i didn’t want him to waste away slowly in a home. both of my grandmothers did, and i couldn’t do anything about it and it haunted me. i just want this man to die at home, surrounded by the things and people that define(d) him. that was my only thought and goal at the beginning of this: him not dying in a home. what i didn’t consider was the reality of care giving, especially at a time when my eldest (aspergers) was finally hitting a stage in life when i could reasonably look forward to returning to the work force. i have been at home for 16 years now, 16 year old and 10 year old children, and am burning out. emotional fatigue, for me, is worse than the physical fatigue, and the financial situation is less than ideal. i know that when he is gone i am going to be so grateful to have been able to do this for him, but lately there have been days where i am pretty sure that the midnight train going anywhere has a ticket waiting for me if i could just catch it. anyway, i guess at the end of the day this is preparation for when i will be caring for my parents as well (two mothers, one father), and ultimately is an act of love that i certainly don’t regret but certainly hadn’t been fully aware of the rapid and ongoing slide of physically failing health. much love to the caregivers. much love to the caregiven. much love to those who couldn’t and wanted to.

      • Regina Falangie says:

        I’m sending you, and all you selfless, exhausted caregivers out there, prayers of courage and strength. Thank you for your kindness and love. It will come back to you. Xoxo

      • Snowflake says:

        That’s really nice of you to do that. I hope somehow you can get a litte break so you can feel better. Can someone help for a few hours so you can go and pamper yourself?

      • Christin says:

        May you be rewarded with peace for what you’re doing. I fully understand the midnight train escape thoughts.

        It helped me to treat my mind like a TV or radio and change the channel once overwhelmingly negative thoughts were further draining me. You expressed what the other channel was for me — to bring comfort and to learn things that might help others some day.

  13. Teebee says:

    My mother has suffered from a very devastating form of Alzheimer’s; dementia with paranoid delusions, schizophrenia, early onset, and as well a crushing and accelerating memory loss. She is only 74 but now in late stage. My father has been by her side, through it all, and still cares for her at home to this very day.

    I, selfishly, could not imagine taking care of my beloved mother full time, even though I love her dearly and have always known of her paralyzingly fear that if she became ill with this disease (she nursed her own mother to her death from cancer and Alzheimer’s) she would be put into a nursing home against her will.

    My father is a rock, as so many unrecognized caregiving heroes are. Recently he told me, essentially put me in my place as I am a constant nagging voice touting extended care, that they “have been together too long for (him) to just leave her to the care of others”.

    He has aged quickly as well, you can see it day by day, and I remind him constantly that he needs to take care of himself as well. But he is unwavering in his devotion. And yet I know he is not alone in his struggle, nor really an exception. So many struggle silently, with little resources, to keep the quality of life of their affected partners as high as possible. Yet this disease has already robbed its victims of the ability to even recognize that devotion. Alzheimer’s is devastating, frightening and yet as relentless and unfeeling as an avalanche in a mountain range.

    I do what I can to help. I need to do more, always remind myself. But my father asks for so little, yet I know as the true end approaches we will all share that final stage together.

    Thank you for sharing this story, CB. Even though it is in the context of celebrity, with all its privileges, the experience of caring for a loved one through illness knows no boundaries, crosses all lines, and when stories can be shared, provides a level of needed comfort.

    May all who share this experience find the support they need, and may you never feel abandoned when reaching out for help. Peace and love.

  14. Digital Unicorn (aka Betti) says:

    I watched my dad care for my mum who has advanced dementia, it’s taken a big toll on his health and he ended up having to put her in a care home – been a difficult time for the whole family. She is happy and settled where she is as its a good place that is specifically for dementia.

    She is right – family caregivers do NOT get the help and recognition they deserve. Many do the best they can without any understanding or training on how to deal with the condition. They are all heroes.

  15. Blannie says:

    There is a wonderful website for caregivers, There are forums on there where caregivers can discuss their issues with other caregivers. It’s truly a lifesaver for us to know that you’re not alone and to hear from other caregivers how they handled situations. The Alzheimers boards will break your heart.

    I took care of my mom for 15 years (she had dementia but not Alzheimers) and my dad for nine years. It changes your life to be a caregiver. Many, many struggle, particularly those with financial concerns that Gene’s wife didn’t have to deal with, in addition to everything else. All caregivers need more support!

  16. Eribra says:

    20+ years as a geriatric nurse, I can tell you how crushing it was for the caregiver partner to have to place their spouse in a facility. They all felt like they failed – even though two families actually had the Alzheimer’s spouse set the house on fire, several had medication overdoses, more than I can count had the affected spouse go missing and had to call the police/ silver alerts. Not to mention the falls and the physical aspect of caregiving. And the unaffected spouse always was so afraid to die first. Caregiver support is so important, please do not judge them if they have to seek facility care. Trust me when I say it was the last thing they wanted to do.

    • kay says:

      thank you for this. bless bless bless you. there are many who want to and can’t for many of the reasons you listed, as well as others. so much shame in not being able to, so thanks for that.

    • Lightpurple says:

      Don’t judge them. Also, don’t just leave it at that. Offer to drive the community spouse to visit the spouse in the facility. Just being a passenger gives them a rest. Or Visit the spouse in the facility at times you know the community spouse can’t so that he or she knows somebody else is checking up on the loved one too. It gives them a sense of relief.

    • Wickster says:

      Thank you, and yes, we had to actually turn care of our father over to the state because he refused to pay his rent and was deep in dementia and would not seek care. We tried everything to keep him independent but he would not accept help at home. Eventually, after hospitalization, he was put in a nursing home that cared for him well. I think people do not understand also that many elderly are actually much better cared for in a nursing home (albeit yes, it matter which nursing home). He was a brilliant but difficult man, and people there cared for my dad in a much kinder way than we would have.

  17. Abbess Tansy says:

    This was hard to read and I cried as it touched on some past issues with me and my family. It can be so hard to be a caregiver. Thank you for this story.

  18. bex says:

    This post is very close to home at present. My father has had dementia for about 10 years and is now in hospital receiving palliative care. It has been an awful ten years with my father suffering with terrible anxiety, rage and confusion and then just slipping away from us all. My mother coped for years, it took six years for doctors to agree on a diagnosis and until then, outside family, she received no help whatsoever. The stress she has suffered impacted her health appallingly. The day after my dad was found a place in an old folks’ home my mother was diagnosed with breast cancer which she strongly feels was caused by the stress of looking after him. I can’t even begin to cover the horror she had to live with day in and out for about eight years but yes, we must think of the carers and certainly in the UK they need a lot more support.

  19. Honey says:

    I can definitely relate. My mom has dementia. I love supporting her but it IS dragging me down. I keep telling myself “I’m not going to let the stress of this kill me.” People often think that supporting people who have memory related diseases is akin to supporting quirky old ladies who have a bit of sass but are essentially warm-hearted. No, that’s the made for TV version. That’s not real life. Real life is a constant mental, physical, emotional and psychological grind with very few rest in between. I love my mom. I’d do it again but d*mn this is hard.

  20. Lisa says:

    It’s so sad to know that such a brilliant, sharp mind could be taken by Alzheimer’s. Not just Gene’s, but anyone’s — when you see it happen to an actor who’s lived a life most of us will not, full of people and events, lines from movies and different characters, it makes you think. I feel for his wife and I’m glad she’s speaking out about this.

    Caregiver and compassion fatigue is real. It isn’t talked about as much because people are afraid to sound selfish, but the fact is, it takes a toll on everyone, not just the person with the illness. Hope she is doing well and taking care of herself.

  21. Jacque says:

    They had been married 25 years NOT 35 – Gilda died in 1989!!

  22. Wickster says:

    A fantastic article. Taking care of my 93 year old mother this past year after 2 broken hips entailed me moving back home for 6 months, leaving my apartment and husband. Thankfully she does not have dementia (as my father did), but it introduced me to the stress of caregiving elders, which is on an entirely different level from taking care of children. For me, it was demoralizing, incredibly lonely, frustrating beyond belief, and because I knew there is only one eventual end to this situation, always accompanied by grief. Then there were the angry times, which caused fights between me and my normally kind-hearted and funny mother, where it even got to the point where, I have to admit, I wished her dead at times (and to be perfectly honest I think she felt the same way about me!). It was horrifying the emotions I went through, and with 27 years of therapy under my belt, I still felt at times I felt I would break. I was depressed in a way I had never been before, under enormous stress. Even with a 12 step support group, I was incredibly isolated and lonely, and the anger especially shocked me. The worst is–you feel like a terrible person for having these feelings of just wanting it all to end and them to die peacefully to spare you the next years of decline. And meanwhile, everyone tells you what a wonderful daughter you are. I felt like a fraud until I found out I was not aloe in my experience, only through helpful articles like this. She is better now and thanks to long term care insurance which helps us hire a caregiver for 3 hours a day, but I dread every day the inevitable decline that will necessitate me giving up my life and my job to manage her care. Add to this the stresses of money worries which overwhelmed me night after night (one thing Gene Wilder’s wife did not mention and I am sure she is grateful she did not have to deal with, but adds immense amounts of stress). Honestly, I dread putting someone else through this with me, and have a “final exit” plan in place. I appreciate the comments here from other people going through the same thing. It is very very hard to take care of an elderly parent or spouse, dementia or not. But especially with dementia –soul crushing. When I read last year the same statistic, that 40% of caregivers die before the person they take care of does, I understood completely why. It is endless stress.

    • Eribra says:

      One of the most common threads with caregivers was guilt over wishing their spouse would die. One – their spouse was mentally gone but physically there- and most of them knew that the affected spouse would not have wanted to live this way. Two – fear of dying first and having no one to advocate for the affected spouse. They had a support group and to hear some of this was crushing. They remained loving and caring and guilt ridden for wanting it to be over but knowing over meant their spouse’s death. I had a DNR at age 27 and renew it every year. Doctors can keep you alive way past the time you would have wanted, and usually legally have to.

    • Christin says:

      Wickster, I am ashamed to admit thoughts and words that entered my mind and exited my mouth during the last months of my parents’ lives. The stresses outlined in these comments sum up just how overwhelming it is. Especially when it is at a high level of responsibility.

      If you can just get two minutes of “me” time, do it. Sitting in a chair and meditating for 60 seconds can be a gift.

      My father gave me some wisdom just before he suddenly passed. I was once again ready to either explode or have a breakdown due to the nonstop caregiving stress. He told me that sometimes we go through really tough times that we think will never end. But they do. We have to do what we can live with. …

      He did not tell me to learn to stuff my feelings over how my Mom was making things harder, or guilt me into caring for them indefinitely. His words were so true. And it did end. They both passed within seven months of his comment.

    • Honey says:

      I feel real low after the arguments and stupid because of the anger and resentment. Logically, I get it but emotionally I feel lower than a turd. Who argues and yells at a woman with dementia? My emotions are just up and down, up and down.

      • Christin says:

        I want to thank everyone who has shared the frustration part of their journey. When it ends (and it will), may you each be reminded of the good things you did. Don’t berate yourself for being human, which includes becoming frustrated (especially when exhausted).

  23. Tiffany :) says:

    What a moving article. Thank you everyone for your enlightening comments as well. I read an article yesterday that said in 10 years, treatment for this disease will be entirely different. Here’s hoping that progress is made sooner rather than later.

  24. Ozogirl says:

    He was a national treasure. I just watched Willy Wonka last night for the millionth time. He was a brilliant actor and comedian.

  25. Suze says:

    Arg. Dust in here.

  26. MrsClincy says:

    We were lucky in my family when my grandparents became housebound. All of their children and us grandchildren took turns caring for them and bringing the great grandkids around for emotional support. Unfortunately we lost both of them last year. We lost my grandfather last July but we knew it was coming and had time to prepare. My grandmother passed that October unexpectedly and it was especially hard on my now 11 year old son as he and his Big Momma were extremely close. But she just couldn’t go on any longer without my grandfather. My son was her biggest source of emotional support and its still hard on him as he cared for and loved her. That type of pain doesn’t go away but thankfully he has the support of our family.

    • Christin says:

      Sorry for your family’s losses, and much admiration for how everyone pulled their weight with their care. Not very common these days.

  27. holly2905 says:

    My 96-year-old Mom passed away 3 years ago and I can still remember practically each day of the last 18 months of her life. She never would have gotten AZ if she hadn’t lived so long and to see her deteriorate was the most painful thing. We went round and round with the gov’t re getting her the Medicaid money she deserved but they continually denied her. since my sister and I are all that’s left of our family it was up to us and we didn’t have the money to put her into an AZ facility (they start here at $6K a month). So we kept her home with us and that last 18 months almost killed all of us. My sister and I both had to keep our jobs and fortunately, both our employers were very accommodating to our needs but I know a lot of employers aren’t so generous. During that 18 months, Mom called the cops on us (keeping her against her will), called us prostitutes, didn’t know us for days on end, etc.

    She fell and broke her shoulder and at that point I think her body just said “I’m done”. She died 4 days later. She was ready to go.

    The caregiver’s life is never easy. You barely have enough time to work and take care of them, let alone worry about keeping the house clean, getting the laundry and dishes done, etc. The last few months we did find a young woman who would come twice a week and spend 2 hours with Mom so my sister and I could get out of the house. It helped tremendously.

    As a society I worry about what we’re going to do with all these people who are living to an age no one could have predicted. As with Mom, a lot of these people will get AZ because they live so long and it’s up to the families to bear the burden and cost of taking care of them. it bankrupts their childrens’ lives, causes divorce and major stress to all involved. We need to provide a better safety net for the caregivers.

  28. Lynne says:

    My mother is dying from Alzheimer’s. Yesterday I was told by the nurse from hospice care that she will probably need to be spoon fed in less then a month. I have a letter which was emailed to me today for the bank, Wells Fargo, (the third letter which I will submit written by a physician) from her hospice physician which states that she has less than 6 months to live.
    What is taking its toll on me right now is the bank. Wells Fargo. They are refusing to accept the doctors letters from my mother’s neurologist and her Internist and the durable power of attorney to release funds for her 24hour care. At a time I want to be focusing on my mother, I’m making and fielding calls to my attorney, her doctor’s staff, and the hospice social worker. Not the bank….lol they don’t call.
    I applaude Mrs Wilder for speaking up about the ‘role’ of a caregiver. It is a sad, hard, and often thankless job caring for someone with Alzheimer’s or dementia. I hope she continues to be an advocate. I’m exhausted even though I don’t do the bulk of the work… me when I say I know I’m very lucky I have help. But, the limited time i have left with my mom, I wish I could be focusing on her, not the bank, attorney, doctors, and social workers……all who are helping me work to resolve this. Nobody understands why I’m being put through this.
    I’ll never forgive Wells Fargo for the hell they are putting me through.
    I’ll never forget that they are taking away some of my time and energy. Thankfully, my mom has no perception that what she planned years ago…….the final stage of her life is being disregarded.