Expert: Mary Gordon - 10/6/2010

Question
Hi Mary,
I have been writing to you over the past feew months regarding my 94 year old aunt who lives in a nursing home.  I have been trying to visit her on the weekends to make sure she is okay and to see if there have been any changes in her condition. I believe she is in stage 7; I notice that she can no longer feed herself, occasionally she will holf a cup to drink, but you have to put the cup in her hand and tell her to drink.  She is sleeping alot more, and looks to have lost some weight. the reason I am writing is that when I saw her this past weekend, the aides put her back in bed after breakfast to have a BM in her diaper as it is easier for her to be changed.  They were also giving her something for "weight gain"- it looked like runny oatmeal.  Does this mean she has swallowing issues now?  I always get the same answer when I go "she is one of our most stable patients".  Do you think she has taken a turn and her illness is progressing.  Please tell me what you think.  Thank you.

Answer
Hi Ellen, they do get to the point where there is no point to put them on a toilet, as they can no longer control when and if they go at all. Unless she is as regular as clockwork, it may  make more sense to let her use the diaper. It may be very uncomfortable for her to sit on a toilet, plus be very time consuming for the caregiver, if she has forgotten what she is supposed to do there and is very weak and tired.  

As to the calorie rich supplement they appear to be giving her, there are many kinds out there. The care staff are trying to get as many calories into her as they can to keep her weight on. In later Alzheimer's, most people's weight will start to spiral down and they get very frail. When they are very thin, it contributes to all kinds of health issues. They get very fragile and bruise and get sores very easily. They can't control their body heat. They get very weak,and their immune systems can break down, making them very susceptible to infections.

The fact they are giving her soft food  and thickened liquids suggests not just a problem with swallowing, but problems in chewing and manipulating foods in her mouth - and this is part of the disease. Eating is a very complex activity, requiring a lot of coordination. As her muscular control decreases, this gets harder and harder. It's like they forget what they are supposed to do with food, or what the food is for. They not only lose the ability to eat, they lose interest in it and seem to find the activity a bother. It doesn't seem to bother them - it is as though they don't feel hunger or thirst like a healthy person. It can take a lot of careful hand feeding and a lot of coaxing to get enough calories and nutrition into them. Quite often, special strategies like high calorie supplements or small frequent meals are needed.

Hope this helps. Her illness is progressing, but it doesn't sound like anything other than the regular and gradual decline.

It is a very slow process and very difficult for loved ones to watch when there is so little you can do for them. All you can do is what you are doing. Come visit her, give her a hug, rub her feet or hold her hands, tell her you love her, bring her some nice pudding - whatever little thing you can do to show her she is cared for and brighten her existence.

Thinking of you.

Mary