Expert: Mary Gordon - 8/1/2011

Question
Dear Mary,
You have been kind enough to answer several questions for us in the last three years.. and every time I have a serious problem I find myself turning to you. thanks a million for all your kindness.

My mother, age 69, is, I suspect in the last stage of Alzheimer's. She was only diagnosed 3 and a half years ago. Today, she can barely walk, even with two people holding on and stoops heavily. Is completely incontinent, has not spoken a word in the last year and cannot sit straight in a chair with no arms. We take her three walks in a day, a few steps.. or as much as she can. we also take her to the toilet every hour. But i can see that she's deteriorating.. she's become very thin and weak and is constantly falling asleep even while sitting. The only good thing is she eats well... though she finds it very difficult to swallow liquids.. we continue to give her water and juices-but's it's getting increasingly difficult and she spits out half the water. I know it's only going to get worse.. and I'm prepared for it.. however, since she wont' say anything and has hardly any facial expressions, I'd like to do everything possible to ensure that she is comfortable..If she gets bed ridden.. what kind of bed must i get?  she currently uses a foam mattress.. would you recommend an airbed or a water bed? I have no idea where to source all this from.. but i'm ready to make a trip abroad to get her everything that she might need, that is not available in india. Also her skin is getting very fragile and she has red bruises near her knew(she still crosses her legs at the knees when she's sitting) is there any cream I must use on her body.. we currently use intensive body lotion and lots of baby oil. She had UTI earlier this year.. the first in her life.. and we freaked out.. now we've made cranberry juice a part of her daily diet..the thing is.... other than the internet we have no source of information.. even our doctors tell us that trial and error is the only way... so anything else that you think might be useful for us will be highly appreciated.
Once again thanks so much for your time and effort you put into helping and reassuring others. God Bless you.

Nimi
Bangalore
India

Answer
Hi Nimi, sorry for the delay in answering, I am away with my family.

You are doing the right things to prevent bedsores. She needs frequent repositioning so there are no pressure points where the circulation is cut off. As she becomes thinner, with less fat and muscle over her bones, she will tend to get pressure sores anywhere there is direct contact with the bed or chair, or where her legs rest when she's crossing her legs. As the illness progresses, she will move around less and less, so she will need to be moved at least two hours (i.e. unlike you or I, she will not shift around in a chair or in bed on her own, so she will have her circulation cut off in spots, and sores can develop). Here is an article from the Mayo Clinic in the US
http://www.mayoclinic.com/health/bedsores/DS00570/DSECTION=prevention

If you are going to get an air mattress, get an alternating pressure mattress or overlay. You can buy these from medical supply stores and on-line.

The problem she is having with water and juice is from dysphagia - it's from coordination issues involved in swallowing. When people with dementia start to develop dysphagia, they don't just have trouble with swallowing. They have trouble chewing and manipulating solids in their mouths because of issues with muscular control. They may chipmunk which is keeping the food in their mouth and not swallowing (which puts them at huge risk for aspirating and choking). I have a friend whose mother literally passed away due to chipmunking banana pudding. The aide who was feeding her was not watching for swallowing, and the poor woman was keeping food in her cheeks, aspirated and passed away before help could arrive. You may want to ask for a referral to a dietician and a speech pathologist, who surprisingly enough, are the dysphagia experts in the system, and who can advise on feeding strategies.  

When people are developing dysphagia, they often have trouble with mixed textures, like cereal in milk, or anything requiring chewing. They often have big problems with thin liquids. This is why they end up on purrees. They can need thickened liquids as well (i.e. there are actually products that you add to liquids to give them a thicker consistency to help with swallowing. There are many out there on the market. One is called Thick-it but there are many different products out there. Generally they are a powder you add to the liquid that gives it the texture of honey or pudding. You will want to make every calorie count if she will only take in limited quantitites - perhaps some liquid nutritional supplements such as Boost, Gain, Ensure if all she will take in are drinks.

Hope this helps. I am thinking of you.

Mary