anyone familiar with the end stages of alzheimers?

[kristie]

I have known DH for 7ish years and his grandmother has been in the end stages the entire time. Conversations are impossible. She eats like a toddler if that. Her speech isn't coherent. She doesn't seem upset or mad when we see her, though sometimes we all go unnoticed. It is very hard for her kids (my MIL). She does seem to enjoy the little kids being around. She doesn't talk to them really, but she laughs and smiles when they are playing around her.

[DotAndBuzz]

Mar 4, 2015 9:57:19 GMT -5 knx9211 said:

Also PP had a great idea - bring pictures. Even if she remembers you, she may not remember details. Bring wedding pictures, baby pictures, etc. That will be really nice for her to look at.

Yes to pictures.

We made my grandma a family board with pictures of us, and her with each of us, our name, and who we were.  made it fun and cute, and put it in her room.  So pictures of her with each of her kids, their names, Daughters in law (who were huge in taking care of her), grandkids, and N.   She loved looking at that board, and it helped jog her memory when she was starting to forget/had forgotten who we were.  "oh, hello!  Thank you so much for visiting me today!  Yes, I know you.  You're in that picture there, and you're my granddaughter."  So she didn't actually remember, but she saw the pictures all.the.time, and it helped make that transition to complete loss of memory less frustrating for her. 

Every now and then, even when it is really bad towards the end, you may see little pieces of her old self come through.  My grandmother was a musician, and at the end she could hardly speak or eat, but put her in front of a piano and she could still play flawlessly.  As others have mentioned, go in with few expectations, and be ok with just sitting holding her hand, or painting her nails.

 A book that helped my family a lot was The 36 Hour Day.  It helps families understand and cope like none other.  www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/1455521159/ref=sr_1_1?ie=UTF8&qid=1425489806&sr=8-1&keywords=the+26+hour+day

It is a terrible disease.  I don't hate a lot of things, but I hate it.  ((((hugs)))) to you and your family.

[Deleted]

I'm so sorry you are going thru this. My grandmother was in the last stage for 4 years and it was a horrible decline. She got to the point where she could no longer speak, tell gender or hardly walk. She had a roommate at her facility and she would just sit and hold her hand all day long. It was very sweet and sad. My mom made her a "memory book" that she kept on her table. It had pictures of her thru the years with all her different husbands, her kids and her grandchildren. Under each picture there would be names and a short story of each picture. The nurses later told us that she often had them read it to her and she would look at the pictures or just listen. In the end she didn't know any of us but loved visits. Anything new upset her. We couldn't buy her new clothes or shoes. She would throw them in the trash can in her room and wear the old clothes. She would only eat pie or biscuits and gravy before she passed. She had a bad fall that was the final blow for her and since she had a DNR we let her go.


My mom still has her memory book and now it is a great thing to show my son since he never got to meet her and he loves to look at the pictures and talk about them with my mom and I.

[vmars]

My grandpa had alzheimers when I was younger. My dad tried to visit him every other weekend - we lived an hour and a half away. He was older when he had it so from beginning to end it wasn't very long - I can't recall the exact time frame. We knew it was the end bc he stopped talking and the would play with toys and just rock back and forth. It was horrible to watch. He did remember most people for a while, but was easily confused and called them the wrong names.

[bearbaby]

I haven't had a chance to read all the replies, but wanted to offer my experience.

My grandfather declined over about 10 years following my grandmather's passing - but upon my her death we discovered how much she had been covering up for him, so he likely declined over more like 15 years or so.

The end stages, where he really became more vegetative, did last quite a while. We did our best to keep him in comfortable, attentive care. I think part of the cruelty is alzheimers is that ultimately it traps sufferers inside their bodies, which can hold on indefinitely.

Prior to him becoming vegetative, we would just come to terms with conversations making no sense. There was no point in correcting him, or reintroducing ourselves, or upsetting him. We would just spend time chatting about whatever popped out of his mouth.

Even towards the very end, though, he had strange spark-like moments of lucidity. (He was watching the news when Osama Bin Laden was found/raided and he looked up and said "well, they got him." He hadn't uttered a coherent thing in months prior). They made me think it was still worthwhile for us to see him/socialize him because who actually knows what's going on inside their mind that they can't communicate.

I will say his passing felt more like a relief - as we'd mourned losing the real person he was many years earlier. I told my Mom that it make me happy to think he was finally getting 'caught up' on what the family was doing/had accomplished - since he'd missed so much in his final years.

I wish you and your family peace.

[cleo29]

I have had several family members go through this and read a wonderful book, Dancing with Rose, that was eye opening. I think one of the better things to accept what their reality is rather than try to force them to what actually is. I mean, where is the harm? I understand the heartbreak for the family members though.

www.goodreads.com/book/show/1072804.Dancing_with_Rose

[Deleted]

FastHands, a couple more thoughts. Are there treats she likes to eat? Daddy loved McDonald's milkshakes. I loved seeing him drinking one, nutrition be damned, what were we saving him for? Also brownies. Fortunately, he didn't have diabetes, so I'd bring him treats for our visits.

Others have mentioned photos. That's a great activity. Sometimes, he would have more lucid days and be able to share stories, or seemingly remember the events pictured.

I've heard it said that Alzheimer's is similar to a light bulb that is not screwed in quite tight. Sometimes, the light is on. Other times, the bulb jiggles and the light is off. I always found this to be true. His cognition randomly varied from day to day.

[1confused1]

I just wanted to send some hugs, it is such a cruel disease.

My grandmother is one of the happy ones. She has no clue who I am but it always happy for a visitor (she's in a memory care facility, thank goodness). She isn't very verbal, loses words when she tries to say something, but it happy to have company. My visits aren't usually very long, about 15 minutes. I have taken my kids once to see her, they are 5 and 8, and likely won't do that again. She didn't know who they were and it was really hard for them to comprehend, even though I did explain somewhat what is going on.

She has pictures of family in her room, but can't recognize who the people are. She did recognize a very old picture of her and her brother the other day (like from when they were young children), but couldn't explain what was going on in the picture.

[delawarejen]

It could be years. And it goes a lot of different ways. I've seen enough residents at the nursing home my grandmother lives in - it depends how far it has progressed and also what their underlying personality is.

My grandmother is a very anxious person, and dementia made it worse. My main goals when conversing with her are to reassure and redirect. I say a lot of "I'm not sure" and "Everything's fine" because I often can't tell what she's talking about but she's clearly asking me a question and expecting a response. (Mine is more advanced now, and mostly speaks nonsense sounds with some sentences of actual English.) Depending on how much time you spend with her, you may find yourself in a more parental role. I try to take each visit as it is, not comparing her to where she was 6 months or a year ago, or to the woman I knew as a child.

Visiting frequently helps if you can - long after she forgot my name or my relationship to her, she still recognizes my face and knows I'm there to see her (which isn't the case for several of her children, who live further away).

[lostrn]

My grandmother had Alzheimers. She had a couple years of being confused, would get really angry with my aunt, who lived with her and my grandfather, she seemed to think my aunt was some strange woman there to "steal" my grandfather away. She never got upset or agitated with us grandchildren when she saw us. She always would tell me what a great son I had, to enjoy hime, etc, but I don't think she knew who I was anymore really. But our visits weren't distressing at all. I feel like she had a couple of years of confusion and then went downhill fairly quickly. She stopped eating and getting out of bed so they put her in a nursing home for her last few weeks. I wish I could remember more concrete details and time frames for you, but if you can go visit I would. I was able to go see my grandmother about a week before she died and took my DS with me. She mumbled something to us that my aunt and I choose to interpret as "love you" and I love carrying that memory around with me.

[livinitup]

I visited my grandmother at every stage of her decline well past any recognizable connection. I thought all of our visits were valuable and meaningful. If she was agitated, I did what I could to take it easy. Otherwise, it was a visit, a time to make sure she was okay, visit with her care takers and care.

[lilac05]

Alzheimer's is so cruel. My grandma had it & now my aunt has had Early Onset Alzheimer's for about 5 years. I wouldn't wish it on my worst enemy.

Here are a few things that brought me comfort:
After awhile, she was no longer seeming to be aware of her troubles, so it didn't bother her.
If we were in town to visit, we'd go for a bit, leave for meals, then go back. Every single time, she acted as if we had just pulled into town after being gone for months. She was SO excited! The joy on her face helped balance the sadness in our hearts.
I never knew if she remembered me or not. I didn't ask. I usually said, "Hi Grandma, it's Lilac!" right away. Then I didn't bring up any relationship stuff. That, also, was to protect myself from the hurt.

She had Alzheimer's for 10+ years. It was awful. The last 2 years, she was non-verbal and mostly bed-ridden, BUT the craziest thing happened after her funeral. Immediately after her burial (as I was walking to the car), my Grandma turned back into her old self in my mind. For so long, when I said her name, I though of her current awful state. After the burial, when someone said her name, a picture of her sitting at the table & playing cards popped into my mind. Unless I'm specifically talking about Alzheimer's, I don't think of her with Alzheimer's anymore. She's back to "fat & sassy" as she always said.