Monday, August 3, 2020

Jane: Musings

Four years ago this month, Sky was diagnosed with "probable early stage Alzheimer's disease." Coincidentally, the visit with the neurologist who gave us the diagnosis came a day before a long-planned trip to Europe. Two weeks abroad seemed like a fabulous idea at this critical moment. We would be together without obligation, and would have all the time in the world to process this news. We had no specific itinerary, no reservations other than the plane over and back. So we wandered from Brussels to Amsterdam to Paris and back to Brussels.

In August, much of western Europe goes on vacation. Many shops are closed, hotels as well, and no one is in a city if they have to be. The trains were full, but the streets and cafes and hotels were nearly empty. We had the cities to ourselves. We wandered and explored, stopped at a cafe if we were hungry or thirsty, and took long naps every afternoon.

And we talked. And we cried. And we talked some more.

Sky was most afraid of losing himself. Or His Self. His Being. His Essence. That he would become an empty shell, and that he wouldn't know who he was.

But what is our Self? It's more than our identity, what we do and don't do, what we enjoy and what we dislike, who we choose to love. Yes, Sky would eventually lose his ability to read, do carpentry work, harness a team of horses, garden, drive a boat and a car, play the piano, even ride his bike. So many things that comprised his life would disappear. His identity as a competent individual who cared for himself and his family would evolve into someone who participates in the world through his hallucinations.

But his Being and his Essence are still there. They may be hard to find under the layers of increasing physical frailty and the random, wandering thoughts that come out of his mouth. But when he manages to lift his head enough to look me in the eye, I see his Essence there, his sparkle, his thoughtfulness, his care. I may only see it for a split second 'til his head drops again, but I know it's there.

Visiting Sky remains challenging for me. I have seen him three times since that first, horrible visit. It's excruciating not to be able to touch him. If I could, I would spend the entire allotted 30 minutes just holding him.  But that's not allowed, so I have to do the second best -- connect with him through my eyes and my ears (not my smile because it's hiding behind my mask). His words are random, sometimes making "sense"... mostly not. I bring a paper and pen now and take notes. As his physical therapist recently said to me, "His hallucinations are really interesting!" Yes, they are, but it makes me wonder what life is like for him in this new and different world. Does he still worry about losing His Self? Does he even care? 

I will never know. But from what I can see, Sky is truly living in the moment. I suspect he no longer is concerned about losing himself because now he IS himself, his pure Essence available for all to see -- all of the time. And for that I am grateful.

1 comment:

  1. Thank you for your poignant words. I can only imagine how hard this is. For you, for Sky, for your kids. Sending lots of love, Chris