Alzheimer’s is a terrible disease. I often hear patients’ families explain it as losing their loved ones “over and over.” Along with strange and embarrassing behaviors there is the pain of the patient not remembering who you are. Often mother does not recognize daughter nor husband recognize wife. It’s an awful pain to see that someone with whom you have shared memories and your life and yet they can not recall your name.
I watched similar experiences happen to my grandmothers, although neither suffered with Alzheimer’s. My mother’s mother was a proud woman always concerned with me “acting like a lady.” I think I must have heard that gentle reminder (not so gently) enough times to equal the hairs on my head. (How does a lady act anyways? I digress. ) Watching her decline was something I did not really understand until I began working hospice. I still don’t think I fully understand it now. I remember thinking each time I saw her, and that was often enough, feeling as if I was seeing less of her or at least the real her. On the other hand, you might say my dad’s mother was the ‘rebel’ of the family: the opinionated Democrat living amongst right-winged Republicans. This makes me laugh now. I remember her vitality shooting pool with her in the basement and catching lightning bugs in the backyard. As different as they were watching them slowly change was a terrible thing I can remember not wanting to be around them at all, because they were not the same people. I have to force myself to recall some of these memories and feelings as I think I have forgotten most of them on purpose. Not too long ago I was sitting with two friends enjoying a glass of wine and making homemade cookies when one asked me how much of my family history fuels my desire to work hospice; a job where impending death and debilitating illness is an every day occurrence. This is a question I am still considering.
Getting back to my original concept, Alzheimer’s is terrible and yet I find it fascinating. I am often amazed at what memories are remembered and which ones are forgotten. I know the clinical jargon short term verses long term memory, but for me as a chaplain I am more interested in what is imprinted in someone’s soul. What was encouraged? What was important? What changed them? Today I had a routine visit with an Alzheimer’s patient even in the midst of her paranoia and sundowners all I had to say or sing was “I come to the garden alone while the dew is still on the roses…” —and sure enough there she was joining me in the chorus. Listening to her voice, old and frail and completely off pitch, but there it was, the words perfectly remembered. After our duet was finished she took my hand and said “it was there sleeping and you woke it up.” During my moment of complete silence due to me simply not having the words to respond she stroked her grey hair and said “you know in the garden there is no confusion and total healing.”