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.

Jane: The Visit

Ten days ago, the governor of Vermont lifted the restrictions on visits to residents of elder care facilities. The state Department of Health issued guidelines for visits and, based on that, Sky's facility issued their own -- outdoors only, six foot distance, everyone in masks, and the visitors questioned about possible symptoms of the virus and had their temperature taken. Visits must be scheduled, only two visitors per resident, only one visit per week, maximum 30-45 minutes. No exchange of gifts, obviously no touching.

I wasn't sure I wanted to visit Sky. I was concerned that it would upset him -- seeing me, and then having me leave him instead of bringing him home. That he would be agitated afterwards. That he wouldn't understand the masks and the no touching. That it would just be too hard on him.

I decided to wait, and get a report from the facility as to how other residents were handling these strange new visits.

The report came a few days ago -- people were enjoying them, and there didn't seem to be any fallout.

Jane: Uncertainty in the Age of Coronavirus

My last two blog posts were about "Respite" in the Age of Coronavirus. However Sky is no longer on respite at the memory care center, but is now a permanent resident. Given that the world is still topsy-turvy, it seemed the best thing to do. So I signed all the papers, and wrote the big check, and there he stays.

It's lonely without him, and it's also peaceful. I sleep through the night every night now, unless I am woken up by a cat doing some kind of cat-thing, like throwing up, meowing at me, or getting into a fight. Luckily, Sayer and Emma were still up the night the raccoon tried to come in through the cat door, so I happily slept through that event. Sleep is a wonderful thing.

Jane: Respite in the Age of Coronavirus #2

The world has changed since I posted last. And so has my life. And so has Sky's life.

I am looking out onto beautiful Lake Champlain, having left our home in Burlington for our camp in northern Vermont on the Canadian border. If we're going to be on lockdown, what better place to be than out in the country, with a view of the mountains and the lake, on a road that crosses into Canada and therefore has very little traffic given that the border is now closed to all but commercial traffic? It's quiet and peaceful -- maybe too quiet and peaceful.

Jane: Respite in the Age of Coronavirus

A month ago, I looked into a respite program offered by one of our local memory care facilities. I had not had a good night’s sleep in months, and I was exhausted. I spent the morning with a staff person getting all the details and having a tour of the facility. The next week, Sky and I returned for him to spend the day and see what he thought. He went to several activities, and we had lunch together in the dining room. So far, so good.