Living Wills & Artificial Means of Saving Lives
by an unknown visitor to alt.support.alzheimers

I'm not a regular poster on this newsgroup but I did want to share the story of my mother's death last night with fellow sufferers of AD (we family members and loved ones, that is).  What I am about to say is based on our particular family's experiences and beliefs, and in no way should be read as a a prescription for "this is what EVERYBODY in this position should do".

Long before my mother (and my father too, who died of Parkinson's Disease two years ago) showed any symptoms of degenerative neurological conditions, we introduced them to an attorney who specialized in elder law.  This wonderful woman (now deceased herself) explained the legal technicalities of a Living Will in our state to them.  (They had already signed such a document, but state law had changed and now required the signatory to address a specific question about "artificial hydration and nutrition".  Both my parents were strongly against being kept alive by artificial means, so they readily signed the document.

My mother was diagnosed with AD in 1995.  Last year in July she had a stroke -- which strangely enough seemed to improve her cognitive functioning a bit (as if it had "burned away" some of the tangles).  So, even though her speech was affected, she was able to shake or nod her head appropriately to yes/no questions, and she even attempted to speak simple phrases for about a year after her stroke.

That state of affairs changed dramatically about two weeks ago when her ever-decreasing appetite completely disappeared.  I would constantly ask her if she was hungry, and she would always shake her head "No".  I should also point out that ever since her stroke, she was in danger of choking due to an impaired swallowing reflex, so all her food was pureed and all her liquids were thickened (I hadn't realized that plain water can pose a real choking hazard to people in such conditions.)

So for the last two weeks, I have watched as my mother (there is no other way to put this) slowly died of dehydration.  But her care (at a hospice-like nursing home run by our HMO) was superb, and it is my belief that she never suffered.  The nurses and aides were constantly checking her lips for dryness, swabbing her mouth, and, towards the very end, giving her morphine when she looked as if she might possibly be in any distress.  My brother and I spent a part of every day with her, talking about, to, and around her as if she could hear and understand everything.  Although she never regained consciousness shortly after we had a Last Rites service for her with all of us present, I believe she felt supported by us even if she could not let us know.

My personal feeling (echoed by my brother) about my parents' refusal to be kept alive by IVs or intubation is one of profound gratitude.  The end of life for someone who has lived for several years with a degenerative neurological disease such as Alzheimer's or Parkinson's is ugly; there is no other way to say it.  So I blessed my father and mother for taking away from me any guilt or indecision about not ordering tube feedings for them.  Two weeks is long enough to watch the inevitable.

One final decision that my brother and I made concerning my father and my mother was to arrange donorship for small, selected parts of their bodies to the National Neurological Research Specimen Bank's Gift of Hope project (the website [may have] more information about it: http://www.loni.ucla.edu)

What I might have thought of as macabre a few years ago now gives me great comfort:  my mother's sweet, generous nature now goes beyond her death.  With this donation (which does not preclude an open casket, though that was not our choice for other reasons), we the survivors can look degeneration, loss and death in the face and contribute to the vital research necessary to defeat this hideous disease.