My mother is 74 and has late stage Alzheimer's. She needs help with every activity of daily living, from getting out of bed, to going to the bathroom, showering, dressing, eating, etc.
She has lost her ability to communicate, although she talks quite a bit -- it's just gibberish though. She recognizes me, but no longer knows my name (she can't respond to "What is my name?" or "What is your name?").
She can walk as long as she is assisted (she leans back a lot), but she seems to tire easily, and shuffles. She does sleep a lot, and when not asleep, spends a fair amount of time with her eyes closed. She does have periods where she's more "present." She'll sit up on her own, and watch television, or just look at me for a long time. Mornings, right when I get her up is when we connect the most... she'll pat my cheek and say something that sounds a lot like "My Baby..."
Meals can take between 1 and 2 hours, and she doesn't really eat a lot. She has to be fed, because she isn't able to manage a spoon or fork, or glass. If her eyes are open, she will open her mouth, but it's hard to get food into it. And her eyes are closed more than they're open. Once the food is in her mouth, she will chew for a long time, and eventually swallow. Liquids are tougher than solids... she will hold liquids in her mouth for a long time, then eventually swallow (or, every once in a while, spit it out the liquid).
So my question is... does anyone have any experience with this type of situation? I'm trying to figure out if I'm forcing food on her... if I ask her if she doesn't want to eat anymore, sometimes she nods yes, other times no, most of the time, she doesn't respond. I know this is a difficult judgment call, but I'm hoping that someone that's had experience with a range of people with Alzheimer's might have some insight they could share with
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Carol
This is what I do now. I buy a mixed bag of frozen fruit and blend it and put it into little containers and freeze (1/2 cup per container). I buy sweet potatoes (already made) and blend them with butter and brown sugar and put them into 1/2 cup containers and freeze them. I buy cinnamon Eggo waffles and frozen blueberry pancakes and blend them into 1/2 cup containers and feed her with syrup mixed in. (I made at least 25 containers ahead for a week)You can do the same with anything, for instance last night I put a can of mini raviolli in the blender and she had a whole cup, nice and thick like pudding.Spagettios and things like that go down easier the therspist told me. Mom only drinks warm drinks and the Dr said 24 ozs daily so she has a decaf coffee (sanka) and 2 decaf teas daily with 2 Tablespoons of Thick IT, sugar and French Vanilla cream. She has 4 oz of real coffee with 3/4 teaspoon of Miralax daily and prune pudding with her pills, I think the pureed constipates more. My hats off to you, I am in the same boat, any more info please write back, hang in there!
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I also give her deserts. I try all kinds. I find that I can get many kinds in the frozen section that are in individual portions so I don't have them in front of me all the time, or I would be eating most of them. I agree that at this point it's important to make her comfortable. If she wants desert I'll give it to her. That's what makes her happy. You just have to find out how she responds.
When she stops eating I won't have the doctor put in a feeding tube. Why? Her happiest expressions are when she's eating desert and when we hold her hand. When she doesn't have this then why make her miserable with a tube down her nose or surgically inserted through her abdomen into her stomach?
Boost and ensure tend to make BM soft. But if it does then talk to the doctor for help, there are options.
Carlosbotran, you're doing a great job. It's hard to know what they want. Like when kids before they talk. Back then I had to use other signs like was suggested earlier, spitting it out or cheeking it (which is a concern because of choking). I'm sure you're doing fine. Let us know how things are going.
We're starting to head into the finger food/pureed food arena -- just to make it easier on us (her "during the week" caregiver and me). My mother will eat almost anything, so I don't think she's having trouble with chewing part. I think it's pretty clear that it takes a while for the swallowing part to get triggered.
My concern about forcing food is because she was always clear about not wanting extraordinary measures taken to prolong her life, and sometimes I do feel like I'm forcing the issue. It's difficult because I can bring food up to her mouth, and she sometimes says "no" but opens her mouth. Other times she'll nod yes, but refuse to open her mouth.
I guess we just have to continue on as we are, trying to get a cue from my mother... but I will also ask her doctor what he thinks the next time he comes to see her.
Thanks again to everyone for your words.
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