When A Loved One Hass Alzheimer's

[drfuzzy]

Oh boy.  Sorry Rhonda.  Oh yeah, I know what that's like.
I was the caregiver/power of attorney for my piano teacher for her last dozen years.  -- The years where she was clearly slipping away.
It's so hard to watch a person gradually disappear.  What's worse is that I'm pretty sure they are still "in there".  I think that there is
some part of an Alzheimer's sufferer that knows who they are, sometimes what they want to say, but the wetware is just failing.
I was quite certain that she did know who I was at some level - even when she was asking me "what's your name?".
It's that piece that I was holding on to - trying to give her all sorts of fun outings to improve her quality of life.  Thankfully, she died
very peacefully in her sleep, in her own home and her own bed.  

Hang in there.  They'll find a cure (or at least, a decent treatment) for this disease some time soon.

-- Fuzz

[Regina]

My great Aunt had it, but I think because she was diagnosed with it when I was quite young and I don't remember her being healthy it was something I was just always used to.

She'd constantly forget my name and get me and my brother confused, forget our ages, and it seemed like every time we spoke we were having the same 15 minute conversation over and over on a loop. Somehow I had a lot of patience with it though and rarely felt burdened talking to her, in the early stages at least. When she got worse it got harder to be around, but mostly because I just hated seeing her deteriorating and losing her ability to have any meaningful conversation at all. She eventually passed on when I was 17 (quite a long time after she was diagnosed actually, she lived for ages).

[Rhondazvous]

I have a grandmother who keeps mixing up names. Sometimes when she's calling me to do something, she'll go down the list of male names until I finally respond to my name. One might think it's kind of funny, but it might also be a sign of a worse problem. She mixes up my niece's names as well, and who knows what she mixes up when I'm not there to hear it? I don't know what I'll do if she stops remembering who I even am. She's a fairly healthy woman, but her time is running out, and I worry about coping when she's gone.

So yeah, I can relate to this. I'm sure a lot of people can.

My mother does the same thing. She'll just go right down the list until she hits the right one. Humans are creatures of habit, and sometimes words just come out of our mouths before we think about what we're saying. This is 2017, yet I still sometimes say 19...oops.

Don't worry , Chad. Worrying about what you'll do when she's gone won't help you enjoy the time you have with her now.

---

My great Aunt had it, but I think because she was diagnosed with it when I was quite young and I don't remember her being healthy it was something I was just always used to.

She'd constantly forget my name and get me and my brother confused, forget our ages, and it seemed like every time we spoke we were having the same 15 minute conversation over and over on a loop. Somehow I had a lot of patience with it though and rarely felt burdened talking to her, in the early stages at least. When she got worse it got harder to be around, but mostly because I just hated seeing her deteriorating and losing her ability to have any meaningful conversation at all. She eventually passed on when I was 17 (quite a long time after she was diagnosed actually, she lived for ages).

Hey Regina.

Well, I remember your name. Thanks for sharing.

[GUBU]

I went to the nursing home to celebrate my neighbor’s birthday the other day. When she lived across the street from me, she loved herself some Rhonda and would tell everybody that I was her daughter. But my visit with her the other day almost broke my heart.

I went with her cousin and we brought a cake and candles and her favorite candy snickers bars. We sang happy birthday and she blew out the candles and we all had some cake. But she kept forgetting that it was her birthday and wondering what all the balloons and stuff were for. Then she started arguing with the cousin, insisting that she had not had any cake. The cousin reminded her that she and Rhonda had brought it for her.  Then she said “who is Rhonda?” For a moment I felt like what was the point. Why come if she can’t remember. A part of me was so miffed that I didn’t even want to hug her goodbye. But I realized that was just being mean. I knew it was the disease not her love for me making her forget. Even if she couldn’t remember, if that one little moment was all she had then I could make that one little moment a happy one.

Have any of you dealt with Alzheimer's? How did you feel trying to have a friendship with someone who no longer remembered you or kept asking the same questions no matter how many times you repeated the answer?

I sometimes think about how frustrating it must be for my friends talking to me when I can hardly hear them or smiling when I can't see their faces.  But guilt doesn't help me cope, it just makes me feel like a should do something without giving me the strength to do it.

My aunt had it for ten years before she died (and she started suffering from it at a relatively young age too), before dying from kidney failure (poly cystic kidneys, not drink). I remember going out to her about two months before she died when she was in CUH essentially waiting for a bed to come available at Marymount Hospice, and the look she gave me was heartbreaking, I'll never forget the pain and confusion in her eyes. It is a horrible thing to have happen to a loved one, Alzheimers, robbing them of their memories and their personhood. My aunt was always working, a nun who first went off to Peru to teach poor children, and then came back to Kinsale trained as a nurse and ended up running the hospital in that town for nigh on twenty years before retiring. She was always on the go, working to help her patients, find funds for the hospital, ensure it was staffed but in the end she was no more than a small child mentally, and it broke my heart. And she always looked out for me and my brother, buying us presents and ensuring that we had a good time any time we visited (for example when I was down in the hospital visiting when about six, she made a big deal about me and my brother being the first to use the lift that was recently installed there).

The worst though was about six months after her death when we were all thinking about her, and my mother talked about one incident right at the start of the Alzheimers when Mary (my aunt) rang up in a frantic state after having gotten lost driving up to visit us, something she had done a hundred times and more in the past. It was a horrible feeling realising at that point that then was probably the first real proof of Mary's Alzheimers.

Rhonda, the only thing I can say is to keep the good times in your mind, remember your neighbour for what she was when she was herself, and do your best to treat her as the same person today. It is a hard thing to witness, but it needs to be done really.

[chimp3]

I have had relatives with dementia. Caring for people with dementia is what I have done for a living for the last 25 years. The best description of Alzheimers Disease is "the longest funeral". It is actually watching a personality die a little piece at a time. 
 I can not link at this time. Please go to youtube and watch a video called "Gladys Wilson and Naomi Feil". There is still someone there. You just need to reach in deep.

[vorlon13]

An old boyfriend of mine I had lost track of (we dated before the internet) recently succumbed to Alzheimer's.

Another friend passed away many years ago from an 'undisclosed neurological condition'. Never found out precisely what he had, last time I saw him it was obvious he wasn't 'right' anymore, but he didn't seem to invoke any ailment I was aware of. I've had 2 relatives experience a continuing series of TIA's and at first approximation you might suspect Alzheimer's, but if you spent more time with them, you'd notice soon enough, it's a different way to have a problem.

[Chad32]

I have a grandmother who keeps mixing up names. Sometimes when she's calling me to do something, she'll go down the list of male names until I finally respond to my name. One might think it's kind of funny, but it might also be a sign of a worse problem. She mixes up my niece's names as well, and who knows what she mixes up when I'm not there to hear it? I don't know what I'll do if she stops remembering who I even am. She's a fairly healthy woman, but her time is running out, and I worry about coping when she's gone.

So yeah, I can relate to this. I'm sure a lot of people can.

My mother does the same thing. She'll just go right down the list until she hits the right one. Humans are creatures of habit, and sometimes words just come out of our mouths before we think about what we're saying. This is 2017, yet I still sometimes say 19...oops.

Don't worry , Chad. Worrying about what you'll do when she's gone won't help you enjoy the time you have with her now.

---

My great Aunt had it, but I think because she was diagnosed with it when I was quite young and I don't remember her being healthy it was something I was just always used to.

She'd constantly forget my name and get me and my brother confused, forget our ages, and it seemed like every time we spoke we were having the same 15 minute conversation over and over on a loop. Somehow I had a lot of patience with it though and rarely felt burdened talking to her, in the early stages at least. When she got worse it got harder to be around, but mostly because I just hated seeing her deteriorating and losing her ability to have any meaningful conversation at all. She eventually passed on when I was 17 (quite a long time after she was diagnosed actually, she lived for ages).

Hey Regina.

Well, I remember your name. Thanks for sharing.

Yeah, I just have to make sure to take times for her, as well as everyone else. Even younger family members, because we all know not everyone lives to a hundred.

[Little lunch]

I have had relatives with dementia. Caring for people with dementia is what I have done for a living for the last 25 years. The best description of Alzheimers Disease is "the longest funeral". It is actually watching a personality die a little piece at a time. 
 I can not link at this time. Please go to youtube and watch a video called "Gladys Wilson and Naomi Feil". There is still someone there. You just need to reach in deep.

As someone who is just starting out in the aged care industry, I greatly value having watched that video on your recommendation.
Thanks. :-)

[Whateverist]

Appreciated the way you resolved your conflict regarding the way she spoke of you. What else can you do. She is no longer capable of intending to hurt anyone any more than she is capable of effectively doing much else interpersonally.

My naive theory about how to handle such a disease is to get really, really good at living in the moment. Aim for sufficiency in little things. Doesn't mean we won't be a drag and irritant on everyone around us. But it probably won't keep us up at night. We'd no longer have the capacity to ruminate.