When I was about 10 years old, my grandmother was diagnosed with Alzheimer's Disease. Over the next 10 years, it felt as if I watched her slowly die a hundred times. First, there was the death of the traveler. Then, the death of the typist, the reader, and the chef. And on and on it went. I met a new person every week. Alzheimer's makes this distinct and devastating. (Though it is a bit like this with all of us. As Alice in Wonderland says, "I knew who I was this morning, but I've changed a few times since then." I remember re-reading that in my 20s and thinking: Truth...)
Years later, I saw a documentary called Alive Inside. Have you seen this as well? You watch those seemingly trapped in this hell of disease, ill in care homes.. brighten, sing, move, and simply find so much joy in music.
Memories started pouring through my mind. My grandmother (and grandfather) loved a good rummage sale (and occasionally, dumpster dive). They put together some interesting outfits (an understatement!). She occasionally insisted on these until her death. She spoke more and more in poetic than in linear form. My grandmother as poet, artist, dancer, fashionista-in-her-own-way - well, those were certainly the last to die, weren't they? Perhaps those identities grew stronger while others fell away. Sometimes I think they really did. Would they have grown stronger still had I known how to support them?
Now, I don't want to paint Alzheimer's, or any illness, as having any kind of 'bright side'. Watching those you love be torn in this way is sheer horror and that is all. I only wonder if a greater appreciation of the poetic, the musical, the artistic - that which best transcends the merely physical realm of our existence - within myself, might have helped.
I spend some time each week now as a caregiver with a hospice in my home of San Francisco. I was sitting outside with a man who had a diagnosis of brain cancer. His thoughts were not linear, he couldn't remember much. I didn't want to try to "make conversation" for worry it might be a stress to him, but I did know from previous visits a bit of his story. Where he came from, how old he was, what he liked to do. We sat in silence. After a while, I took out my phone.
"Would you like to listen to music?"
"Rolling Stones? Shall I put that on?"
He shrugged and then looked at me with a kind of mischievous grin.
"It's just a shot away."
I turned on my speaker and we listened to the stones for a few hours in the garden, while he mouthed along most of the words.