Expert: Alanna Shaikh - 12/9/2009

Question
My mom is 85 years old and has suffered from Alzheimer's for at least 17 years.  She has been is private nursing facility for the last 10 years.  She doesn't walk, talk, smile or support her head well; she is double incontinent about she has regular bowel movements.  Her vitals are good and her organs are functioning well.  I would guess she has been in the final stages of the disease for about 2 years - although she still follows us with her eyes when we can get her attention, however, she hasn't recognized anyone in at least 5 years. She rarely leaves her bed but isn't sleeping all day or comatose.  When she does leave her bed she is lifted into a mobile lounge that is partially reclined.  About a year and a half ago she began to have difficulty swallowing - she had been hand fed blended/liquified food for at least 4 years.  Her doctor recommended a feeding tube to avoid aspiration, etc.  Since she still seemed interested in eating, and didn't seem to be "giving up", we agreed; also thinking that we would not likely prolong her life beyond the natural progression of the disease based on what we read about Alzheimer's - i.e. about 6 months with or without feeding tube in her state.  Also, during our only conversation about advance directives several years before she became ill, she was a believer in "any and all" measures that could prolong a life.  I don't think she had Alzheimer's in mind at the time however.  It has been almost 18 months since the tube was placed - she has not improved and has lost some weight but, she remains very healthy, all things considered.  Good color, no bed sores, good skin elasticity, never gets sick when others do - she has a remarkable physical constitution.  Her care is excellent and affordable.  Her doctor now says it is almost time to replace the tube and we have a dilemma again.  There is little quality of life but, she really doesn't seem to be letting go.  Have you had any experience with similar situations?  I never thought we would have to face this decision twice - once was hard enough.

Answer
Dear Karen,

I am so sorry you're in this terrible situation. I don't have any advice to offer here; I have never faced what you are facing. I just want to say this - you are clearly a thoughtful person who cares deeply for her mother. You're considered all the different aspects of this. I am sure that whatever choice you make will be a good one.

very best,
Alanna