Saturday, October 24, 2020

Jane: The Change of Seasons

It's blustery and raining today with temperatures dropping from the 60s to the 40s. Prediction is that 40s it will be from here on out. No more warm weather reprieves like yesterday when it was in the 70s. Time to turn inward, and stay inside. There are still some holdouts in the garden -- carrots, cabbage, kale, spinach, parsley, peas -- but everything else has died and been pulled to be added to the compost pile. Life and death. 

I visited Sky yesterday after a month's absence. There were only two phone calls in that time, brief calls, where Sky wanted to tell me what he was doing ("Just finished tiling the bathroom! It looks great!" "I've been baking bread with the kitchen ladies and just bought a new grill.") and then, abruptly, he says he has to go. All I can do is listen to his voice -- which sounds completely "normal" -- so I am confused for a moment. Maybe he doesn't have dementia? Wait, no. He does. And then he is gone.

The staff calls me every time he "falls" (or places himself on the floor) which is happening with greater frequency. They're not really falls though -- he's just busy doing different things -- like a "project" that involved him crawling across the floor, or sleeping on the floor in someone else's room. I still wonder what it's like to be him.

Yesterday he hardly spoke, mainly looked at the floor, and muttered from time-to-time. He said Gary Oldman and Sean Connery were there. He kept repeating the words for ice cream (morozhenoye) and please (pozhaluysta) in Russian. He said, "There is good potential if I have enough energy to follow them." Though when I asked what he meant, he did not respond, just like he did not respond when I told him about the nice weather, or about a friend who had died, or that we took the boats in for the winter.

Once again, I am faced with the decision of whether or not to keep visiting him. It is painful for me, but I think it would be painful to not see him. So much pain all around.

The changing seasons also mark the time of year when we remember our dead. There has been a lot of death recently among my friends and their loved ones. Cancer, in particular, is taking too many people too soon. We honor their lives by remembering them, the gifts they brought to the world, the challenges they faced. We look our own mortality in the eye. And then we go inward to await spring's rebirth.

Between the virus and the election, there is a lot of stress and anxiety out there -- and in here. I grieve the end of the garden season, the lake season, the boating season. I grieve the loss of friends and colleagues. I grieve the loss of the Sky I've known and loved for 35+ years.

Thanks for sharing in our journey.

This is what Sky looked like yesterday:

Sunday, September 6, 2020

Jane: More Musings

I've been re-reading my mother's journals. She started them five weeks after my father died in 1994. It seems as though she wanted someone/something to talk to. My father was quite sick the last eight years of his life which put a dent into the busy social and travel life they had had over their years together. This frustrated my mother immensely. She was not a good caregiver, and seemed to resent my father's decline.  She gradually had to be in charge of all aspects of their life -- no longer did my father make the travel reservations, get the oil changed in the car, or host the cocktail parties. Fortunately, she was a competent woman who was not afraid to take on the extra responsibilities beyond her life as a mother and a homemaker, but she clearly wished things could be otherwise.

Her journals mostly chronicled who she went out to eat with, where, and what foods she indulged in, activities of her children and grandchildren, and her concerns about her own health. And a whole lot about how lonely she was, and how much she missed the "good times" with my father. She was a very social person, so perhaps living alone after all those years -- 54 -- was just too much of a shock.

I think about her loneliness because I don't feel lonely without Sky. I feel sad, certainly. I feel relieved that I no longer have to care for him 24/7. I find peace in knowing that I can come and go as I please, I can eat or sleep when I want to, and stay up late watching too much Netflix.

But I do miss our easy companionship. I miss talking with him -- we used to talk about everything from current events, to what to plant in the garden, to personal feelings, to our careers, to our children, to where we were going to travel next. Everything under the sun. Now when I visit him he doesn't talk WITH me, he talks AT me, and he talks less and less all the time. He is having a hard time finishing his sentences, even his hallucinatory ones. The subject changes from one sentence to the next. I take notes, hoping to find some meaning in what he says, but I generally don't find it.

He also doesn't respond to what I say either. I tell him about the garden, or something our kids or our cats have done, and there's just a blank look on his face. The next thing that comes out of his mouth has nothing to do with what I just said. So I mostly don't talk anymore -- I listen, and I hope, and I just look at him and wonder what it's like to be him.

I've decided to take a break from visiting. I don't think Sky is getting anything out of it -- on the contrary, I think the visits bother him. The last few times he has asked to go back inside long before our half-hour was up. I've made a plan with the social worker, and when she sees him, she's going to ask him if he'd like to talk with me, and if he does, she'll set up a phone call. We'll see how it goes. Cooler weather is changing the nature of the outside visits anyway, so this may be for the best.

So I keep living my life, wondering how the pandemic will play out, how the election will play out, how the climate crisis will play out, and whether I'll have enough canning jars and lids to deal with the garden abundance. My thoughts always turn to Sky off and on throughout the day. And here's one thought that comes to mind often: a few visits ago, he said this: "I have a one-way ticket out of here, but it runs out in March or April." Is that when he will die? None of us can know. So I'll keep on taking things one day at a time.

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.

Saturday, June 27, 2020

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.

Sunday, May 24, 2020

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.