Expert: Paula Damgaard - 1/6/2004

Question
My mother has had Alzheimer's Disease for approx. 13 years.  She has been in a nursing home for the last 4 years.  Has been totally non-weight bearing, must be feed, communication very little to none, total incontinence all for the entire 4 years.  Her blood presure has always been good and she has only had 2 UTI's.  In other words, excellent health except for the Alzheimer's.  Last Tuesday, out of the blue she started running a temp of 100.5, developed congestion in the chest and her oxygen rate dropped to 86 percent.  We put her on oxygen.  We initially thought pneumonia but her chest x-rays come back showing no pneumonia and the blood test results are all normal except for a small drop in her white count, 1 point below normal.  She refused to eat or drink.  The only thing that has been found is a UTI which is minimal and we are treating that.  She stayed this way for 4 days and then started to eat and drink again however, her congestion remains and her oxygen level sporatically drops to the 80's.  The Dr. gives me no opinion.  Quitely, the nurse suggests congestive heart failure or a pulmonary embolisim.  We have a do not resusitate order, no artifical means of feeding or hydration order and are not looking at prolonging her life but are very concerned with making sure she is not in pain.  Can you offer any advise.  I have contacted a local hospice but she is not hospice appropriate as yet they say.  Thank you for any opinion/advise you can give.  Barbara

Answer
Dear Barbara,  I am not sure what is going on with her either.  She may have a viral infection which isn't showing up anywhere.  I doubt very much that she is in pain.  

What do I think?  I truly believe that somewhere these patients "know"  what is going on and make a decision that they have had enough.  While you have made all of your decisions not to prolong her life, which I totally support, I would also suggest to leave her alone.  Make sure she is comfortable in her bed.  Watch her facial expressions, sounds she makes etc.  this will tell you if she is in pain.  But luckily for AD patients the brain as it "rots" with the disease, rots the pain center too.  

If you think she is in pain ask her MD to give her something.  Tylenol is a good pain reliever for patients, as well as Advil.  Ask him to give it to her around the clock.  

I hope this helps.  Please feel free to write again.  Good luck.  Paula