What Alzheimer’s takes

A lot of you know that my grandmother–my dad's mom, who we always called Mamama–has Alzheimer's. A few years ago, when she was still mostly there, we moved her out of her house to an apartment in a senior living center. Then last Valentine's Day she fell and broke her hip. She was in the hospital, then a recovery center, and is now in a nursing home especially for people with Alzheimer's. She has a huge window. Her caregivers are good. We visit her regularly.

But she's already gone.

She's not Mamama anymore. Layer by layer she's left us. Her opinions, her thoughts, her desires. She used to be so vain about so many things, and now she doesn't even notice. She still knows our names but not how we're related to each other. She looks at the picture of her with her maid of honor at her wedding and remembers that day, but doesn't remember what the last meal she ate was.

I don't know what to make of it.

Friend and reader Kristen told me that her husband is struggling because his grandfather is gone, too. "My husband's grandpa doesn't remember him. They were as close as could
be and now after spending the day together he has no clue who he is."

They were as close as could be. Now he's gone.

Kristen asked me how she could help her husband, what she could say that wouldn't make it worse. I wish I knew. I think a hug would be the best thing she could do. The only thing she can really do. How can he be here but not?

I don't know what to make of it.

My friend Meggin lost her mom to Alzheimer's before her mother died. My friend Gina is losing her mom, piece by piece, as I write this. My uncle cries in his car when he leaves a visit with Mamama. She's not his mom anymore.

It is grueling. It is desperate. It is so crushing.

I was sent a children's book about Alzheimer's to review, My New Granny by Elisabeth Steinkellner. It's a sweet little book, about how Granny used to be, and how she is now, and reducing expectations and showing love even when the person isn't the same anymore. I think it would be good for little kids who have noticed some changes in someone with Alzheimer's. I love that someone wrote a children's book about Alzheimer's. But it almost seemed too rosy for me. I still don't know how to explain to my children who Mamama WAS. What she liked, and how she made us feel, and what was great about her and how she drove us nuts. How she was my role model of a working mother when I was little. How she took an enormous chance on my grandfather and they made the kind of love people are lucky to have.

When we moved Mamama out of her house she/we weeded out a lot of her jewelry, and she gave me a pair of earrings. When I wore them and got compliments I'd say, "They were my grandmother's, and she gave them to me. It's nice that I get to have them and she's still with us." But that's not true anymore.

She's not with us. But she's still here.

I don't know what to make of it.

 

 

(I'm wearing purple on Friday, September 21 for Alzheimer's Action Day. If you see someone wearing purple today, please give them a hug.)

31 thoughts on “What Alzheimer’s takes”

  1. There are documented cases of people suffering from Alzheimers becoming lucid when they are near death, and thanking people for taking such good care of them. So… I assume they are still in there, down deep, and look forward to seeing them again, either in this life or the next.It doesn’t make the pain go away, but helps soften it a bit.

  2. One of my most difficult memories is of visiting my great-grandmother, who was mostly gone, in her nursing home and seeing her weeping and asking my father, whom she called by her late husband’s name, why she couldn’t go home. I started crying while I was typing that. To put it lightly, Alzheimer’s is the worst, and my heart goes out to you and your family.

  3. She still with you. Deep under everything, parts of her are there. Grandma was at the nursing home and Grandpa asked the nurse how she was and Grandma said something to the effect “I’m having a good day, Jerry”. The next day, she didn’t remember him. It would come and go and come less often as time went on, but I truly believe she was still in there, somewhere. Maybe in her dreams. I don’t know.It was easier for us to let her go, it was easier to let go of my husband’s grandmother with Alzheimer’s than it was for his other grandmother. But yeah, it’s still hard.

  4. I’m so sorry, Magda. We lost my grandmother to Alzheimer’s, beginning twelve years ago, and ending five years ago. I hope that the people at her nursing home are as loving as the ones who took care of my grandmother for her final years. It is a horrible, horrible way to go, and I am still so relieved that she is finally done with it.

  5. I have stopped saying “I know” and “I understand”. I stopped saying that because I DON’T know and I CAN’T understand how he feels. All I can say is “I love you” and “tell me more”.

  6. A good friend recently lost her mother to Alzheimer’s, but like so many others, it has been many years since her mom had been herself. As my friend put it, you want to grieve for who you lost, but you can’t because they are still physically present. It makes it so much harder.

  7. This is so hard to read, and frankly I’m glad I’m reading it now before there are many comments that briefly tell their own stories of how they had to say the long good-bye.My mom’s disease isn’t yet so progressed that she can’t live at home, but it is coming. I miss her already.

  8. This is so hard to think about. My grandpa has Alzheimers and I can see him slowly slipping. He still knows us all, but sits through most conversations with a glazed look on his face like it’s too much to follow. I can’t bear to think about when he doesn’t know who we are.

  9. You know my Grandpa suffers from the same. We are loosing him a bit by bit (he knows we are but I can feel it) and it really hurts because when I see him, I still remember those summer days we used to spend with each other watching birds (He was nature lover and I used to say I want to eat that birdy). I’m still in denial that no nothing is wrong with him and he is just acting, but deep inside I know he is not.

  10. A dear friend is taking moment to moment care of her mother who is deeply gone in Alzheimers. Her father died a couple of months ago from complications of Parkinsons and a different sort of dementia. It has been three years now that she has been day and night caretaker.There are flashes of her mother, from time to time. I have visited a few times and her mother seems to remember at least that I’ve been there before and she doesn’t get agitated. M, my friend’s mother, has been through historic experiences and all that is really left is an occasionally sharp wit and a slightly wicked chortle.
    Even though I have been there I cannot imagine it. She has that loss in her mind moment to moment. She has about 2 hrs a week relief from her brother.
    My friend has never been sweetness and light or deeply patient (she is my close friend, after all), but she is gentle and takes very good care. There is a respite place her mother can stay, but they do not make sure she gets some walking in or engage her throughout the day. And my friend cannot stand to see her mother wind down faster than necessary.
    I cannot imagine.

  11. Some ideas to help:I heard about a thing you can make than can help some alzheimers patients – an activity blanket- with lots of zips and buttons and clasps to do up and undo, lots of textures & activities. Seems to help them keep themselves occupied.
    Here in Brisbane, Australia there is/was? a radio station that only played olden day music & plays, and simple radios that could only go on and off. Apparently it made a huge difference to the patients. Read more here: http://www.couriermail.com.au/spike/columnists/music-to-elderly-ears/story-e6frerh6-1225804621118
    Michelle

  12. I’m sorry, Magda. My father-in-law has it, and he doesn’t know Paul at all anymore. We’re these nice people who come to visit sometimes with cute kids who he loves to see and play with, but he has no idea Paul’s his youngest son and he flirts with me. And he doesn’t remember us visit to visit. I kind of joke that “Alzheimer’s Carl” is awesome, because he was kind of a quiet, unsociable guy, but the Alzheimer’s has triggered this courtly, friendly side of his personality that’s kind of a ladies’ man.

  13. My father is only 65 and is three years into early-onset Alzheimer’s. My DADDY. SIXTY-FIVE. It’s too young. He has five young grandchildren who will never know the man he was – and he’s already changed so much that even I am finding it hard to remember…It’s so sad and scary for him but equally so for my mother, who just retired from a life of teaching and was ready to get started on her bucket list. Their bucket list.
    Heartbreaking. My condolences and empathy for everyone else out there suffering from this whole-family disease.

  14. My grandmother passed away a few years ago due Alzheimer’s.She didn’t recognize anyone, thought my father was her husband (he is a carbon copy of him) and she’d cry every time she saw him (her husband left her with 5 toddlers, she was devastated).
    She asked to see her children but in her mind they were all small kids and not the grown people who visited her, we didn’t exist in her mind so she was uncomfortable to have strangers over. She’d cry to sleep and she muttered things about not knowing what her kids would eat the next day, I remember her saying “I don’t have milk, I don’t have soup, I don’t have money… God, what will they eat tomorrow?”
    It was beyond heartbreaking. During her better days she never mentioned the struggles and suffering she went through when her husband left for cigarettes and never came back (she was a stay at home mom).
    Sometimes she had glimpses of reality and if you ask me, she might have passed away in one of those glimpses.
    She was found death in the garden of her nursing home, they took her there so she could have some sun. She asked them to leave her alone for some minutes. When the nurses came back, her wheelchair was upsidedown and she was asfixiated by the grass and the weight of the wheelchair.
    It was declared accidental death but deep inside I believe she did it on purpose.
    I didn’t know today was alzheimer’s day… And cointidentially I’ m wearing purple.
    Hugs to all

  15. My mother in law had Alheimers. She died in 2007. She lived with us for a few years between when she couldn’t stay at home by herself and when she needed a nursing home. I was pregnant with the youngest at the time, the older ones were 4 and 13.It’s hard. It’s hard to watch. It’s hard to take care of them. It’s hard to know what to do or say. It’s hard to find the balance between taking care of your 10 year old child and your 54 year old “child” mother in law. The care choices are either wicked expensive (and deservedly so) or wicked hard to look at.
    One of the things that is amazing to me is that when you mention that you’re taking care of someone with Alzheimer’s, there is someone you know who will say, “I understand. My (aunt, mother, grandmother, mother-in-law, cousin) had it. It’s tough.”
    And given that fact, I’m amazed that we don’t have better care options. (still on a soapbox 5 years after I’m out of the thick of it).

  16. I am sad to admit that I stopped visiting my grandfather after he didn’t know who my dad and I were anymore. I was in my early 20’s and I could do nothing but cry after I left and I couldn’t speak to him because I felt like I would cry. My husband never met him because he was already “gone” when we met.What caught me off guard was how sad I was when he died, but it was mixed with relief. I had begun to mourn the fact that he was gone from my everyday life, but there was still substantially mourning to do when he was physically gone.
    I don’t think anyone else can say anything to make it better. The best thing another person can do is to listen to everything the person has to say without judgement. You don’t know how awful the experience is until you live through it.
    Hugs.

  17. I’m so sorry to hear all your stories, especially the early-onset ones.My grandmother is there now, though she’s 93 – was doing well til about 85. She had an amazing life – after her first husband’s very public suicide (small town love triangle – horrible), she raised her son, remarried, started and ran a successful business, raised two kids, and had a happy 60+-year-marriage. She hated to cook, but made excellent kosher dill pickles and even better vodka tonics. She was strong and smart and tough and beautiful and sometimes blunt and often loving.
    We are very, very lucky in that my grandparents had enough money to pay for a lovely assisted-living community with kind, patient, and well-trained staff.
    She knew exactly what was coming, having seen her mother and both her sisters go through it. The worst part for her was the fear and depression, once it had gotten bad enough that she knew how bad it was – but not so bad that she didn’t know what was happening. Now she’s on the other side of that, but it’s the worst part for my grandfather, who’s 93 and sharp as hell. He says, “I’ve lost my Mimi, but she’s still here.” He tells me they fall asleep every night holding hands. It is, I think, even harder for him than for her.
    And I know the very real possibilities. I eat well, try to exercise, take a big pile of brain-friendly supplements every day, write and think and learn. But I know the odds – chances are I will live well into my 90s but not escape this – and it scares the hell out of me.

  18. I forgot to wear purple. Or maybe I’m in denial.My grandfather died of Alzheimers when I was about 7 – I barely remember him from before, as he’d been in care for a couple of years by then.
    My mother, his daughter, is now sinking into it, as I know she always secretly feared she would. She knows she forgets things, she knows it’s getting worse, but since she can’t remember what it is she’s forgotten, it’s all a bit hazy. I don’t know whether inside her head is a stressful and frustrating place or just pleasantly fuzzy. I would like to think the latter, but I fear it’s the former.

  19. I’m six years in to paying $6000 a month for Alzheimer’s care for my father in law. I’ve got 2 kids and twins on the way and a full time job I work just so he can be safe and cared for. I love him to bits and Alzheimer’s sucks.

  20. My mom died of Alzheimer’s 3 years ago. I took care of her after my dad died. In the end I was one of the few people that stayed emotionally connected to her. It was the hardest thing I’ve ever done, but also spiritually the most rewarding. Two things really helped.The first was that early in my care taking I stopped seeing it as a decay. She couldn’t cook anymore. She didn’t remember me. Those are things that would pull me out of being present with her because I needed to grieve that loss. By the time I plugged back in, all of this other stuff had fallen away. I couldn’t keep up with the grief. Then I started looking at it as a slow leak – a gradual transference of her spirit, essence, whatever. The less of her that was here with me was more that had joined my dad. This perspective really helped me.
    When mom got non-verbal it got more difficult. It is hard to transition from having something to having nothing. Going from having nothing to something is a much different experience. I lost my dad all at once, not bit by bit. If someone gave me the chance to physically experience some of my dad, just for an hour and only with two of my five senses, would I do it? I could hug him and see him but not smell him or hear him. Or I could hear him and see him but not hug him. Would I do it? Absolutely. When it seemed like she was just a shell, I could still look into those hazel eyes. I could still feel her soft skin. I could still listen to the rhythm of her breathing. Rather then focusing on the 90% that wasn’t there, I tried my best to appreciate the 10% that I still had with me. Soon there would be nothing.
    And there was. I’m glad I stuck it out. And, truthfully, I’m glad it is over.

  21. I haven’t personally lost anyone to Alzheimer’s, though I’ve known some people a degree removed who suffer or have suffered from it. I do know of a very good book (for adults) about it — at least, it seemed very good to me, though I haven’t been right there myself. It’s _The Long Road Called Goodbye_, by Charlotte Akin. http://www.amazon.com/Long-Road-Called-Goodbye/dp/1881871339/ref=sr_1_1?s=books&ie=UTF8&qid=1348340645&sr=1-1&keywords=charlotte+akin.

  22. I’m surprised no one has mentioned feeling angry. I care for my grandparents–one has Alzheimer’s, one is mentally sharp but physically incapacitated–and I often feel anger. Anger toward the disease, anger that my parents are gone and can’t help, anger that my baby isn’t getting my full attention, anger at answering the same.questions.all.day.long. I have a great therapist and I’m working on it, but I feel really really mad a lot of the time. Stupid Alzheimer’s.

  23. My grandfather had senile dementia, and my husband never really got to know him. After he passed, my father sent us a copy of the video interviews he’d made with my grandparents maybe 15 years earlier. We did this with both sets of grandparents–sat them down and had them tell us their life story. It was an incredible comfort to see these videos. I definitely urge EVERYONE to do this with their parents/grandparents. It’s a great way to preserve family history.

  24. I didn’t read all the comments. I appreciated the perspective in this book: “Inside Alzheimer’s: How to Hear and Honor Connections with A Person Who Has Dementia”.

  25. Well described. My great grandmother and grandmother both had Alzheimer’s for many years before they died, and it is a most bizarre and fragmented sort of loss. There is a beautiful documentary “Complaints of a Dutiful Daughter” that captures some of this, as well as the humor that is so often there in these human tragedies – I highly recommend it. Also, an Argentinian (I think) film called “El Hijo de la Novia” that captured parts of the experience so well it just got me in some way and allowed me to grieve about my grandmother in a way I hadn’t done before I saw the film.

  26. Leanna,This is a great book to have on hand for clients that have or may be canrig for patients with Alzheimer’s. Thanks for the recommendation. I like learning about books you find useful in your elder law practice.

  27. I want to know if the woman Lesley loved did marry that doctor. Fascinating.When my mohetr passed away my sister swore she heard the doorbell ring in the middle of the night it woke her up, the night my mom passed away. We also received a letter from a college friend of my Mother’s who didn’t know Mom had passed away, the friend relayed that she dreamt Mom had visited her and was laughing and saying We did have fun back then didn’t we? Referring to their life as two fresh-out-of-college single women inSan Francisco. And this dream took place on the evening my Mom passed over.We did write the friend back to unfortunately break the news of Mom’s passing but also to thank her for the story.Suzanne U.

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