Expert: Mary Gordon - 9/7/2009

Question
Mary,
   i have wrote to you before,mom is starting to swish her food in her mouth . she cant eat food that needs to be chewed i give her stuff like pudding or applesauce .she has started swishing her food for about 2 weeks now . does this mean she is getting ready to stop eating ? she does her drinks the same way. i go see her 4 times a week. i always take her something to eat and drink. she is in a nursing home 5 minutes from my house . i pray every night that mom just goes to sleep and don't wake up. i don't want my mom to see the end stage of this disease.i know she would not want to live this way. she has had  a uti for a long time the Dr. put her on meds but it never really goes away .she don't act like it hurts her . ive noticed one other thing her arms seem to be very stiff when i try to change her is this to part of stage 7?  i know im writing to much and i want to thank you for being here for all who have a family member with this disease.

                 GOD BLESS YOU!
                      SANDY

Answer
Hi Sandy, what's happening to her is called dysphagia - it's from loss of coordination. She is having trouble chewing and swallowing.

Here are a series of information sheets and tips for feeding a person with dysphagia. Although the page is aimed at people with loved ones with Huntington's disease, what has happened to your mom is exactly the same - her swallowing problems are from the neurological damage her Alzheimer's is doing.

http://huntingtondisease.tripod.com/swallowing/id10.html

The care facility is doubtless aware of the issue. If you are bringing things from home, be careful - she may need thickened liquids rather than thin ones. You also need to be very careful that she is swallowing what you give her and not "chipmunking" it in her mouth. She can aspirate what is in her mouth and choke. It's very serious - she can actually suffocate or develop aspiration pneumonia (i.e. she won't swallow the food but will breath it into her lungs causing infections). She needs to be sitting forward when she is fed with her chin tucked in, and left sitting up for about half an hour after meals. If you are going to feed her, make sure you talk to the staff to know what she can and can't have and any tips or observations they may have about what works.

A friend's mother actually died from eating banana pudding. She was keeping it in her mouth and not swallowing, and the person feeding her was not paying enough attention to that fact. She then breathed it all in, and passed away before the ambulence could get there. So it is a big worry, and you do have to be careful.  

If you look at this page you will see descriptions of the stiffness you are seeing in your mom. It does go with the later stages.

http://www.alzinfo.org/clinical-stages-of-alzheimers-disease_page3.asp

I know this is heartbreaking. I think this is probably much harder on you than her. She is past the point where she has worries and fears to torture her. You are the one who is distressed - and I know that is very difficult for you, but merciful for her.

Hang in there,  you are doing the best you can.

Mary G