Expert: Paula Damgaard - 6/21/2007

Question
My mother is clearly at end stage Alzheimers.  She is in a skilled care facility where I visit each mornining, while my loving second dad (step dad) comes each day at about 11:00 and basically stays until Mom is in bed at about 7:00pm.  

My question is related to advanced planning.  She is completely incontentent, speaks a word or two a day...mostly grunting, is immobile, very rarely gives any facial expression and is developing swallowing problems.  She is now pretty much refusing or failing to eat but takes a few sips of water or tea daily.  We have been able to get a few sips of Ensure in her,as well, but that is it! She is beginning to take very, very, little of her medication (placed in tiny pudding cups). My mother has an advanced directive with DNR orders and the refusal of artificial means of support. Now with her refusal to eat, her skin seems to be breaking down, despite pillows, wedges, etc.  They want to do an MRI tomorrow to check on recent nosebleeds, but I'm not sure if I am in favor of putting her through the torture. I am not even sure that we need to stress over the fact that she is not taking her medications very well, anymore.

In blunt words, what are we facing.  How can she handle not eating.  Her skin seems to be breaking down.  Blood to the surface, tears at the smallest movement, and tiny nosebleeds with a few trickles. This has occurrred frequently...lately.

Thanks for any advice.  

Answer
Dear Myra, I am sorry I didn't get to answer this sooner!  I have been handling some family issues and haven't logged on in awhile.  Again I apologize.  I am hoping you went with your gut feeling and refused the MRI!  What a thing to put your poor mom through!  

In blunt words: she can handle not eating very well.  It is painless and an easy way for her to go.  Sometimes I thinks somewhere in their heads they know that they have had enough.  So they stop eating, taking meds, etc.  She is failing and that is why her skin is breaking down, she doesn't have the immunities to prevent these things.  

You are being very compassionate in doing what you are doing for her.  Please think of how your mom would have wanted her life to end if she could have planned it.  I am sure that being in the position she is in would not be on her list!  Tell the doctors that she has had enough.  That you are done with medicines, tests etc.  Doctors are taught to "make better"  sometimes they forget that not everyone can be made better no matter how much they try.  It is ok to let them go.  

I did the same thing for my mother.  When we put her in an assisted living center we stopped all her medicines.  We decided that it was between her and God at that point.  She developed a pneumonia and we chose not to treat her.  She died three days later.  It was very peaceful and it was over for her.  We hated to lose her but we knew she would never want to go to the end of this dreadful disease.  I am sorry you are going through this and again I apologize for not getting back to you sooner.  If you need something more please feel free to contact me at my work email: pld5c@virginia.edu, I can check that one much easier.  My thoughts are with you  Paula