Tuesday, April 14, 2020

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.

But the cats like it, and we're grateful that we have this option. I'm here with our son and his girlfriend, our co-tenants in our house in Burlington. Since they're both working from home, we can't see Sky, and we have no idea how long this will last, it seemed like the right move. We rented a U Haul, brought up extra furniture, bikes, computers, all the food and alcohol we had in both houses, lots of books, games, art supplies, yarn, fabric and sewing machines. (And the cats -- who, we discovered, are not fans of traveling). We found a friend to live in the house and watch over it.

All was settled. We just had to wait for the virus to play itself out.

Then I got a phone call from the facility. Sky had a fever and wasn't feeling well. They tested him for the virus, and we had a tense and scary 36 hours until the test came back negative. Both we, and the staff at the facility, breathed a sigh of relief. (The majority of Vermont cases are in nursing homes or other senior living facilities.)

But all is not well with Sky. I had a "care conference" yesterday with several staff members from the facility and got a lot more details about his life there (given that our brief phone calls are only about his hallucinations, I really had no idea what was going on for him).

He remains mainly lost in the world of his hallucinations, some benign, some not. His nights are particularly challenging as he wanders and doesn't always find the bathroom -- at least not his own bathroom. He has taken to dismantling the furniture in his room, and he apparently is fond of throwing things out -- including his glasses, his toothpaste, and some of his clothes. They have not found the right combination of medication to soothe the hallucinations enough to allow him to sleep. He has started to need help -- "cueing" they call it -- using utensils to eat his meals.

I don't think we'll be bringing him home.

But at least he's no longer asking me to bring him home.  In one lucid moment last week he said to me, "I like it here. There are other people like me to hang out with."

It's an unknown time for all of us. I'm trying to learn to live in the moment, to be grateful for what I do have, and to accept that I cannot see Sky -- for who knows how long. I'm trying to trust that the staff are doing their best to care for him and keep him safe.

Sky turns 70 on Saturday. In a different world, in a different life, we'd be celebrating by going out with the family to our favorite restaurant. Not this year, not for this milestone. Wherever you are on Saturday, whatever you're doing, please send him a Happy Birthday wish through the ether. I hope he'll feel it.


  1. Oh Jane, what a mix of feelings I have after reading this. Glad for you that you're in a beautiful place with family, sad for Sky and your relationship, glad that you're (apparently) finally getting some sleep, sad that Sky is getting worse. So many feels. I'll try to remember to send Sky some birthday wishes on Saturday, as I'm sure you will too.

  2. Hi Jane. When I read your February post, I found myself thinking about respite, about you being able to recharge, about how hard it was for me to take that step with my mother. But time got away from me, I was traveling and away from internet, I missed your March post, and now I have caught up March and April, and the world has changed.

    I will think of Sky on Saturday and send him 70th birthday wishes through the ether. And I am thinking of you. It sounds like he is doing alright where he is ... maybe not always great but maybe no worse. Thank goodness he likes it there, so (I hope) you don't have to be tormented with worry or guilt. And hopefully you are getting some sleep ... and maybe even doing some sewing, and maybe just equilibrating.

    I think it's amazing and beautiful that he calls you, that he knows who you are ... even when you are not right there in front of him, he has you that deep in his mind ... and in his heart ... deeper than the plaques and tangles can go.

    The corona virus makes this an especially strange time. But Alzheimer's takes such a strange path that the world with covid-19 probably hardly seems any stranger.

    Thinking of you, imagining your camp where you can see the lake and the mountains, glad you are with your son and GF. I have so admired both of you throughout this journey, and still do, for the love, courage, compassion, and sharing of this strange road ... with some terrain that is oh so familiar, and some very different. Love to you both.

  3. I had an old Harrowsmith magazine lovingly saved from the 80's and was so curious how your lives had unspooled. Google search took me to your writing and I was amazed how you had re-formed your life over and over while fear had kept me so close to the sidewalk.There is not one word that encompasses the courage,sadness,envy and joy your story evokes in me. As OB nurse who moved to nursing home care my heart breaks for hearing of Sky's decline and knowing how impossible it would be to care for him at the camp. I am glad you are safe and surrounded by love and nature. Reading your journey has made this mess of disability, lock down, exhaustion a bit less lonely. Thank you.

  4. You are all in our thoughts. I hope Sky doesn't mind late birthday wishes through the ether.