Expert: Mary Gordon - 9/20/2008

Question
Mary i hope you can help me . my mother is in a nursing home has been for a month now . i go see her every morning .sometimes she knows me, not by name .here in the last three months she is spitting all the time.why is that?sometimes she has trouble taking her pills to.she holds them in her mouth it seems like forever and she gets all upset. she is in stage 6 and some of 7 . i live only 6 minutes away from the home (thank god) it seems to be a really nice place. but i feel really bad that shes there.i wish i could have taken care of her but i new i couldn't handle it .i new she needed more than i could give .she has to have help eating and she is in depends most of the time. her not being able to take her pills it worries me the nurses have even started crushing them but she still is having problems .is there anything else that can be done? she is taking a sleeping pill,a nerve pill and her ad pill. should we keep her on them or should we just stop all meds except for pain meds?

Answer
Hi Sandy, it sounds like she is developing dysphagia, which is issues with chewing, manipulating food in the mouth, and swallowing.

It is a common development in people with progressive neurological diseases  - it is a coordination problem caused by the brain damage, that can lead to  drooling, choking, coughing, inability to suck from a straw, pocketing food in the mouth, no gag reflux, respiratory infections, and weight loss.  Holding her pills in her mouth is called is called chipmunking, and is actually pretty dangerous because she is in danger of aspirating what is in her mouth into her lungs, which can cause asphyxia and also aspiration pneumonia.

I have a very good friend whose mother actually died from eating banana pudding. The person feeding her did not make sure she was swallowing. She was holding it in her mouth, and then inhaled it and died before the ambulence got there.

The normal drill for this is to call in a specialist - usually a speech pathologist for an assessment. People with this problem will often choke on thin liquids. Things with a mixed texture, like a crunchy cereal in thin milk, or chunks of vegetables in broth, are really a problem. Many people with this problem can't handle chewy solids either. Essentially, they usually need everything the smooth soft texture of a thick pudding.

This is done by pureeing many foods, and adding thickeners like "Thick-It" to liquids.  Thick-It is just one brand. The nursing home may use others. Her medications should be liquid form or crushed to dust and put into something like applesauce or pudding.

They should be making sure she is sitting upright when they feed her. They should place a small amount of food on the spoon, and avoid touching her teeth (so she doesn't try to bite the spoon. Place food in the middle of the mouth in the front third of the tongue, and push tongue down (this stops the tongue falling back into the mouth and getting in the way of swallowing). They should give her plenty of time to chew and swallow, and make sure her mouth is empty before they give her another spoonful. After eating, she should be kept upright for at least 20 minutes.

Hope this helps. I don't think she is quite at the point where you want to opt for palliative care only. The meds she is on seem to be for things that really make her uncomfortable, like being agitated, not sleeping etc.. If you want her to be comfortable and serene, I would not stop those.

You should talk to the home about palliative care and when it might be appropriate. My mother in law was completely bedridden before we opted for that (i.e. she couldn't talk, she didn't know anyone, she couldn't walk, she was totally helpless and incontinent. We had a DNR on her as well. She would eat if it was spooned into her. The palliative care came in when she started eating less and less, no matter how much she was coaxed or how many times a day it was tried. Finally, she stopped eating entirely, and we made the decision to keep her free of pain and distress, and let nature take its course. I don't think your mom is at this point just yet.

Ask the home to get her dysphagia evaluated, and get the dietician to come up with a an appropriate diet for her based on the findings of the evaluation.

Hope this helps

Mary G.