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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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Carlobotran, I can identify with your care situation and concern. It seems you have had many good suggestions on food selection. With late stage Alzheimer's many forget what to do with stuff in their mouth. The ability to make decisions or choices is very damaged by the low mental function. Many people eventually show loss of interest in food. It is important to offer nutrition to your Mom if she is awake. She should have choice to refuse by closing her mouth, indicating "no" or if expressing refusal by anger or turning her head away etc. The big possibility is that of aspirating some food into her lungs since she is forgetting how to swallow, having greater difficulty with liquids and probably chipmunking food in her cheeks. Hospice nurses and aides can be very helpful to you and your Mom during her last stage of Alzheimer's. I recommend asking her physician for a referral. The physician or you may know a in-home hospice care provider to choose. Many blessings to you both.
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Suzmarie, I agree. the words aren't the clue to go with. If she opens her mouth then feed her but if she says no then go on to desert and if she says no then she doesn't want to eat. Don't try to change her mind, just make food available to her and let her decide.
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Maybe yes and no are confusing for her. I would say if she opens her mouth it is ok. Give small amounts
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Thank to you everyone for your replies ... it's good to hear from others that are in similar situations.

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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Hi mrs... I so agree with you on the happy times with sweets and hand holding. I wheelchair Mom out to dinner with us, we all sing at night and she absolutely loves it. Some nights after we sing a few times over, she sings too, hums the tune, its amazing! Love those precious moments too! (just fed mom cherry vanilla ice cream after her pureed dinner! lol
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My mom is 91 and still talks a little. She will say she wants something but when I give it to her she may not eat it or only a few bits. I puree things like meat but I leave other foods in small pieces like soft fruit and rice. 6 months ago she made it clear that she didn't want pureed food. Mom's hospice nurse recently told me that one of her former patients told her to put sugar on anything pureed(anything! including veggies and main dishes). She didn't have dementia but food was pureed because of swallowing trouble. She started offering this to other patients and they liked it. I followed this the other day and added it to stuffed bell pepper and veggies. Mom ate all of it for the first time.
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.
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Braida...my mom doesn't get constipated...you would think she would! Maybe her medications help with that (blood pressure, memory and anxiety pills). I did try a variety of baby foods and every one I had to throw away because she didn't like then. She wants sweet things. They say the last taste buds to go are the sweet ones. She doesn't like the savory foods anymore. Yes, other than a feeding tube, there isn't an alternative when they cannot eat or drink and to me, that is very intrusive and defeats the purpose of their body, wanting and needing to shut down. I am not there yet, so we shall see what I really do. My mom was in hospice (they came to our house) for 6 months due to failure to thrive. During that time, I started feeding her this diet and she went from 109 to 125 in a matter of weeks. After she gained the weight, the hospice said that she is better now and just has dementia and doesn't seem to be appropriate for hospice, so they discharged her. We can only take one day at a time and lean on each other!
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Mommag, does your Mom get constipation on that daily diet of yogurt, bananas, and Ensure? Has anyone tried some of the pureed baby food? They seem to have so much variety of that on the market these days, and some of it sounds not too bad. My Mom isn't quite at this stage yet, but I know it's coming and I'm afraid, to be honest. I'm glad I read these posts, for "food for thought" so to speak. So, when they don't open their mouth or swallow any longer, Mommag, then what? Starvation time? This sounds very frightening, but other than a feeding tube, I suppose it is what will come. I hate to think of it!
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In this late stage of dementia, the key is simplicity (in my opinion). I give my mother yogurt, bananas and ensure 3 or 4 times a day...it equals 1628+ calories. It never takes more than 15 minutes. She likes an occasional cupcake, chocolate or strawberries. She doesn't like anything else...she shows me by spitting every other food I have tried in all forms and says it's poison. She hasn't lost weight, in fact, she has gained a good amount. With zero activity, who needs any more calories and there is no point in worrying about good nutrition at this point; they are not going to get better...it's all about keeping them comfortable. My mother is 89 and in stage 6 of Alzheimer's. She lives in her bed. She only gets out of bed with my help and her walker, to go to the toilet, then to her eating table and then back to bed. She freaks out if I put her in front of the window to watch the birds or whatever...so back to bed she goes. Shower day is difficult. She doesn't like t.v. and sometimes screams at the radio to be quiet so she can sleep. She cannot carry on a conversation but does talk a lot of nonsense and blurts out things; mostly complaining or screaming at someone to get out of her room when there is no one in there. She is able to feed herself her banana, spoon her yogurt into her mouth (always a mess) and hold her own cup to drink. When I would fix her eggs, she would eat those with her hands....she has since declared that she does not want eggs...I will try again another day. So far we are not at the point where she has difficulty swallowing although she doesn't express hunger often. I don't know how things will progress (digress) but I will just go with it and know I am doing my best. I think that when they don't open their mouth or swallow any longer, it is time to stop feeding them and let them go.
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I believe that as long as she is opening her mouth she is wanting/desiring food but as someone said has perhaps forgotten what to do with it. my neighbor, after he chew his pureed food, would gently rub his adams apple area up to the chin and say manja manja--spelling here may be incorrect but it means swallow swallow in italiian. I served my mom mini meals throughout the day vs 3 larger meals per day; she liked that better and then it didn't take 1-2 hours for feeding.
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PS, you can feed her the frozen fruit puree like an icy, or she can even drink it depending on how much you thaw it. I know the puree sounds disgusting but I try all her products and foods ad believe it or not, its just delicious, I wouldnt feed her anything I wouldnt eat. Good Luck,its a lot of work preparing ahead of time but once its in the freezer for the week, you'll be so happy its done ahead.
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Dear Carlo...your post brought tears to my eyes when you said your Mom touched your face, precious! My Mom is also in late stage, only garbles words,but stopped walking over a year ago and now her transferring is so difficult its taking two to get her on and off the toilet. I did get her a lift chair and its fabulous. My mom also has the swallowing issues. I took 2-3 hours for breakfast and 2-3 hours for Dinner feeding her also!! We now skip lunch and have 2 larger meals, and I puree her foods and it cuts the time in half. For breakfast she will have pureed waffles , a yogurt and a pureed fruit (all I made ahead) with decaf coffee.I put all her food in the cussinart (or blender) and she has Thick-It in her drinks or she will choke. I had a speech therapist evaluate her swallowing and she said to put the cup to her mouth verses a straw so she doesnt choke as easily but thicken all her drinks.You can buy thick-it at Walmart,CVS, or as I do, online but its usually at the prescription counter so ask. (you dont need an rx) Its about $20 a container but if I buy 6 online I can get it down to $15 each with free shipping on amazon.
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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How does that person in the medical field come to that conclusion?
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You are wonderfully caring and patient. I'd say she probably still needs and wants food - she just doesn't know what to do with it when it's in her mouth. If she refuses totally, then she may be getting to the point that food is a negative thing for her. Please discuss this with the doctor who would have a better idea about where she is in the process. When the death process starts, the body functions begin to shut down and food is not digested, so it becomes a negative stress on the body. Only a medical person can decide where your mother is in this process. My heart is with you. This is a tough time and tough decisions are ahead. Hospice is a wonderful support when your doctor indicates that your mother is terminal. Take care of yourself, too.
Carol
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