Anyone have experience with a loved one with Alzheimer's?

Miscellaneous and Personal Stuff I Must Share
1

Well, it seems that my grandmother officially has Alzheimer’s disease. We’ve been suspecting it for a long time, but her doctor confirmed it last week. For the past several years, her memory has been getting worse and worse, and we’ve also noticed a lot of personality changes. Lately, things have precipitously declined. She’s started seeing people who aren’t there, and having conversations with them. She confuses pronouns, referring to my son as “she” and my daughter as “he”. She can’t remember what day it is, and she can’t remember things like her Monday night choir practice, which she has been going to for the past 15 years. She needs help picking out her outfits, although she can still dress herself. She remembers people’s names for the most part, which is nice, but she asks repetitive questions to the point that sometimes after being up at her house for awhile, I think my head will explode. How many times you can patiently answer, “So is the baby sleeping through the night yet?” without going crazy? But, I try. She also has trouble remembering that MrWhatsit and I have moved home from Seattle, where we lived for four years. We moved back to Ohio six months ago, but every time I visit, she asks when we’re flying back to Seattle. I don’t know whether to keep telling her, “Grandma, we’ve moved back here, actually” and then answer the subsequent slew of questions (which are also always identical), e.g. “Where are you staying?” and “Do you have a job yet” and so forth; or whether to just humor her and say “We’re staying until next week”, knowing that by the time we leave the house she’ll have forgotten what I said.

What prompted her trip to the doctor’s office last week was a paranoid episode in which she forgot who my grandpa was, and accused him of being an intruder in her home. She demanded to be “taken home” and called her sister, my great-aunt, to come get her. My great-aunt did show up and after a few hours of paranoia, she calmed down and remembered that she did live in her own house. But the whole thing prompted my grandpa to get her an appointment with their family doctor. Several MRIs and other neurological tests later, they’ve determined that she probably has Alzheimer’s (because she doesn’t have anything else).

She can’t really be trusted on her own right now because she’s likely to think she needs to “go home” (her childhood home from the 1930s? we’re not sure) so family members have been visiting up there very frequently. This also gives my grandpa a break. And my aunt has come up with a rotating schedule where everyone is supposed to go up there one night a week and make them dinner. Apparently they’d been subsisting on frozen dinners for the past several months, because Grandma can’t cook anymore and my grandpa’s vision is really too poor for him to use the stove reliably. My aunt is also hiring a twice-monthly cleaning service. (My grandparents’ house, which used to be so spotless you could eat off the floors, as my grandma is a cleaning fanatic, is a filthy mess.)

Does anyone have experience with this? My other grandmother also died of Alzheimer’s-like dementia, but I was a little more removed from that situation (I was away at college) and didn’t really see the decline in progress. I’m just not sure how to handle this or if the family is doing the right thing, or what. And, I miss my grandma. She’s still there physically, and I often see glimpses of her old personality, but the person she once was is gone, and it’s really difficult to deal with. She practically raised me during some of the time my mom was a single mom who worked full time. But that person – the person who scrubbed her kitchen floor until it shone, knew all the PGA tour standings by heart, and volunteered at the elementary school library three times a week – is gone. And, I really miss her, and I don’t know how to deal with this new person in her place.

Anyway. Advice is welcome. Also, does anyone happen to know how hereditary Alzheimer’s is? I’m trying not to dwell on the fact that both my maternal and paternal grandmothers have had it, as well as one of my maternal great-aunts. I’m at a point right now where every time I can’t remember the plot of a book I know I’ve read, I panic, and it would be nice if I could stop doing that. I’ve read a lot of books.

Thanks.

2

Alzheimer’s Disease and Heredity (Texas Department of Health)
Dementia and Heredity (Alzheimer’s Association (Australia))
Alzheimer Disease and Heredity (Alzheimer’s Society on the Health Cite web page)

I don’t have any serious first hand information. My Mom was just diagnosed with probable Alzheimer’s in the last few weeks. I do, however have the same concerns you expressed about its heritability.

3

sigh My experience with Alzheimer’s is an aunt who lived 250 miles away. She was fine, then she was diagnosed, and then she was dead. Sorry, that’s not too encouraging but… :frowning:

4

My grandfather seems to have it. He lives 3000 miles away, and I’ve only talked with him on the phone since he was diagnosed. Phone calls are very circular, with him forgetting who I am and what we’ve talked about a few minutes in. My aunt takes care of him, and saves me from endless cyclical conversations. I’ll be visiting him in a few weeks, I hope he recognizes me.

5

One grandparent died of it a year ago, another now in the early stages…

Yes, the regression thing is very real. But often it can be handled easily. My grandad was luckily in a VERY good home, full of nurses who were doing academic research into dementia and Alzheimer’s, and so knew all sorts of tricks. Like when he seemed to no longer be able to use the toilet, they just put a bucket under his bed. Because he was regressing to the first half of his life, when he had no indoor toilet and just a chamberpot. Problem solved.

Perhaps you can do other practical things. If they’re living on frozen dinners, then maybe cook a huge casserole, divide it into portions and freeze it for them?

I’m trying to stick on the practical side, because I can’t offer much hope on the loss-of-personality. But I know how difficult it is.

6

I live with and help care for my 91 yr old grandfather who has this desease. It is very difficult and draining and yes my head does want to explode after him asking the same q’s over and over again. Sometimes I wish he would just pass in his sleep so my grandmother doesn’t have to go through this anymore.

What keeps us from putting him in a home yet? He was a good man, he provided for his family and we want to do the same for him as long as we can. There is a point when he will have to go in a home and yes that time is drawing ever near as we can only bear so much strain and we don’t ever want it to get to the point where we resent him.

I don’t really have any advice other than don’t burn yourslef out. My grandmother and I are like a tag team-I come home from work and she goes to church meetings, I stay in and she goes shopping. Family support is immensely important, it has to be a joint effort.

My grnadpa is still in there somewhere, even if he doesn’t always recognize me. Best wishes.

7

My grandmother died of Alzheimer’s a few years ago. My best advice is something that’s so easy to say and so hard to do:

Don’t take it personally.

It’s a horrible disease because it leaches away the person you know. As the disease progresses, she’ll forget you. She doesn’t mean to, and it terrifies her, but she will forget you. My grandmother had 11 children. She knew them all, then she thought all of her daughters were her daughter Mary and all of her sons were her son Phil. Then she thought all men were scary but still remembered Mary. Then everyone was terrifying and caused her to scream in fear.

When it got to that point, visiting her was torturing her. My father felt he had to visit, that she was his MOM and if he didn’t visit he was a bad son and ungrateful and anything else you can imagine. But the fact was that he needed to stay away, his whole family needed to stay away, so that she could have peace.

I’m not saying this same thing will happen with your grandma. I don’t know how common it is. But try not to feel that you are failing her when in reality it’s her brain that’s failing her.

Best wishes, and I’m so sorry to hear that you and others are having to tackle this inhumane disease.

Julie

8

Alzheimer’s is a horrible disease…

My great grandmother had it. She regressed to when she was a young girl and thought her daughter (my grandmother) was her mother and that I was a friend she grew up with. She told some amazing stories about growing up in the early 1900’s - I wish I had the forethought to write them down! Eventually she forgot English since she learned it as a young adult and only spoke French.

Right now my FIL has it. He is going to be 56 this year and is already on permanent disability. He has trouble telling time. His personality has changed greatly. He spends his days watching TV and avoiding his family. This has completely changed my MIL’s vision for their retirement!

My husband’s grandfather is in a nursing home because he has Alzheimer’s. He doesn’t even know his wife is dead. They don’t feel telling him would be a good idea since he would have to be told repeatedly and this would be traumatic.

Watching all of this and wondering if my husband is next has been difficult. I have also learned there is seldom dignity at the end no matter how wonderful a person you are and how well you lived your life.

:frowning:

9

My husband’s 97 year old grandmother has Alzheimer’s. She lives about 1000 miles away so we don’t see her very often, and our last trip she didn’t know who my husband was at all. She asked the same questions, and we warned our 7 year old son that it would happen. He actually went along pretty well and just kept answering her. She seemed to really appreciate the visit, and could remember lots of stuff from her past.

Grandma is in a nursing home because she needs care around the clock. She is really a sweet woman, and has had no really “bad” days. My FIL (her son) says that some days she doesn’t remember who he is either, so it is slowly getting worse.

We figure (and my advice) is to keep visiting and keep answering whatever questions she has. She seems to be aware that she has this disease, but doesn’t realize that she is asking the same thing over and over again. So, we just want her to live out her last years in happiness and comfort.

10

My Grandmother suffers with Alzheimer’s. I stopped reading the responses above because I kept thinking… “oh yeah I remember that” and getting depressed.

In 3 years time she went from forgetting where her glasses were to forgetting all of her grandchildren’s names to forgetting what town she lived and finally to a nursing home where she sat most of the time and mumbled to herself.

A year ago I figured out that if I brought up the names of people she knew and asked her if she remembered them that she calmed down and enjoyed our visits. I’d say things like “Your friend Lucy? She had a lovely birthday party last week with a pink cake and lovely flowers” She seemed to enjoy just listening to me describe lovely, happy things to her that included the names of people she knew.

I gave up trying to answer all her questions over and over. She didnt remember so I just gave her the easiest answer. Once she asked if my daughter (who is 8) was eating solid food yet. I just said, “yes, Gram. She’s eating like a horse these days.” She smiled and nodded her head and folded her delicate hands on her lap.

Right now she can’t do anything for herself. Bath, toilet, dress, eat… NOTHING. In 3 years time she’s deteriorated that much.

Any support I can offer you I will.

~k

11

My parents spent Thursday & Friday with us. Mom just turned 76 and Dad will be 79 this year, Mom seems to be in the early stages of Alzheimer’s. She’s starting to repeat questions and had trouble remembering where our bathroom is. Dad’s getting worried about his own memory too but he seems to be mainly having the same problem I do: people’s names & some words.

12

My grandfather, last I saw him, was showing very serious signs. Asking the same questions over and over again. Not remembering who people were. My family being my family, they refused to admit it might be serious and said it was just “gettin’ old.”

13

I lost my Mother to Alzheimer’s. As you have seen it takes away the person’s personality…their “self.” Eventually they become a number (as in Stage Three or Stage Four of the disease).
There will come a time when you will need to rely on professional help. Do not feel guilty when this time comes.

God love you and good luck!

14

I lost my grandfather to Alzheimer’s. My most vivid memory is of having to physically restrain him from going out his front door (before they fitted it with deadbolts after the second time the police brought him home after finding him wandering the streets in the middle of the night). The thing that struck me most was how physically fit he still was-I had a good six inches and a hundred pounds on him, and it was all I could do to keep him from just pushing me aside and heading out for the five minutes it took him to forget that he wanted to go out. It was just so hard to comprehend that something could take away his mind so completely and leave his body so untouched. I don’t think I’ve ever cried like I did that night …

My parents and grandmother sent him to a nursing home while they remodeled the house and hired a full-time caretaker. It seemed strange to some people that it was important to us that he stay at home when he didn’t seem to have any idea where he was. But I’m glad we did … When my grandmother died suddenly after a stroke, he didn’t show any immediate reaction to the news. But he stopped getting out of bed at all right afterwards, and started refusing to let the caretaker feed him; he passed away himself two weeks later. They’d been married for over seventy years, and even though he didn’t recognize her at the end, he couldn’t live without her.

I’m sorry, I probably haven’t been much help, and I can’t write about this anymore right now. Good luck.

-Christian

15

I had a great aunt that died of later stage Alzheimer’s. It was horrible. I’ve never seen a human so miserable. At first it was just confusion, but it progressed rapidly. She seemed to know something was terribly wrong, but didn’t know what it was. She’d be angry, then crying, then incoherent. She got to the point she basically couldn’t remember how to eat, much less do anything we take for granted. Near the end, there was absolutely no way to comfort her. It’s like her mind died, but the body out lived it.

I tell you this not to discourage you, but to suggest there is only so much you and your family can do. At some point, a nursing home with a special Alzheimer’s unit is the only answer.

One thing everyone with a computer can do to help find a cure for Alzheimers is donate spare CPU cycles to Stanford University’s distributed computing project on misfolded proteins:

http://www.stanford.edu/group/pandegroup/folding/

16

My dad has it but so far shows no inclination towards wandering and still recognizes everyone. He’s 77. My mom shows no sign of it at all. I will stick around to help them out.

17

Both my grandfathers went from Alzheimer’s. My dad’s dad wasn’t around us, and my dad told us that we might not want to see him like that, as it wasn’t going to do him any good, not knowing who we were, and we might not want to remember him like that. We didn’t go. Now I’m not so sure about it. It might have been good for us, even if it wasn’t for him.

My mom’s dad stayed with them in a bed in the family room until he died. At one point they both were there in bed, but then she had a stroke. He didn’t even know he was at her funeral. I think he slept through it. He was able to stay with them the whole time because my mom is a nurse practitioner, and my dad and cousin wrestled him out of bed to the bathroom until he wouldn’t stand up for them any more. Plus they didn’t like the cost of the care home. They did get help from hospice. I think he beat the doctor’s prediction of having 6 months left, though. He was almost impossible to wake to feed in the last few months.

I guess all I have to say in the end is that it’s not their fault, it really is a disease just like cancer, and love them till the end.

I wouldn’t go to the trouble of explaining everything to them all the time, though. It hurt my mom to explain that her mom was gone when he called for her, and it didn’t help him. He had no emotional reaction, and just forgot again anyway. If it doesn’t affect anything, I think I’d tell them what makes things easiest.

18

My father contracted Alzheimer’s when he was in his early 80’s. He too wanted to “go home” every few days even though he was living in his own home. Nothing would convince him so I’d drive him around for a little while. When we would get back to the house he’d recognize it and everything would be fine for a while.

He had two episodes that I consider somewhat bizarre:

The first one occurred on one of his real bad days…he didn’t recognize my mother or me, he wasn’t “home”, and was convinced his dead sister was waiting outside to pick him up. We couldn’t get through to him at all.

My GF had been in Wisconsin visiting her family for two weeks and stopped over on her way home. My father recognized her instantly, asked about her trip, and talked about her family. He remembered everything about her while at the same time telling her it was “a shame Balle_M isn’t here” while I was sitting right next to him. He still had no idea who is own son was.

The second happened when he was in the hospital after some minor surgery. I was sitting in a chair next to his bed when he whispered,

“Shoot 'em.”

"Uhh…shoot who, Dad?

“Those two Germans…shoot 'em before they get close enough to use a grenade.”

"What Germans?

“Those two by the trees…Shoot them or give me the goddam rifle!”

It went on like this for the next few hours as he relived his WWII experiences. The scary thing was that it was so real to him.

Finally, you’ve already been given the best advice - don’t take it personally. They don’t know what they’re saying, and they don’t mean anything by it. It’s heartbreaking, but you’ll get through it.

19

Please, before it gets to the point where dealing with your grandmother becomes too much don’t be afraid to ask for help. It may not hurt to start checking out alternatives now, so if/when the time comes when you and your family will have to hand her care over to others you’ll be able to do so fully informed instead of scrambling for information and making hasty decisions.

Don’t wait until you and your family are over their heads and falling apart from the stress of caring for someone with Alzheimer’s. It’s heartbreaking enough to know that the person you knew, the one you loved and cared for is essentially gone: it’s even more heartbreaking to see a family crumble under the stress in addition.

I’m not sure what else I can add, beyond treat your grandmother with patience and kindness, and don’t forget to treat yourself the same way.

<< Real programmers like C because it’s the only language they can spell. >>

20

My grandma was recently diagnosed with Alzheimer’s. I am not there to see what is going on, as I live in a different state, but I’d noticed things about a year before she was diagnosed. I went up to visit and stayed at her house for a few days. During that time, she said some really odd things, like walking in to see me in the livin groom and asking me how I got in there so fast. I didn’t know what she was talking about, and she said “I just walked by you in the hall, you were heading back to the bedroom!” I told her that no, I’d been in the living room watching TV, and then she interrogated me for about 1 minutes, wondering what friend I had over. I told her that I didn’t have any friends, but she walked back to the bedroom and checked a couple of times. Another time I was in the living room, and she came in and asked why the baby was crying (At this time I was about 6-7 months pregnant.). I told her that there was no baby, and she told me that I’d better go back and check on the baby because it was crying.
She also sees little kids in her house, and tells my aunt that they go into the den and crawl around on the furniture, and it irritates her. She also calls my uncle at work to find out where my aunt is, because she sees her at her house, but has a feeling that she’s not really there. :frowning:
She is on medication now and is doing better, my aunt said. I don’t know the name of the medication right off hand, though.
FWIW, my aunt said that she got really bad after a glaucoma surgery, and I had a friend relate a similar story about her grandma. Is there any kind of link, or is that just a weird coincidence?