Monday, August 22, 2022

Jane: Alzheimer's Canyon: The Book!

 Hello all!

After Sky died, I turned this blog into a book knowing it was important to share his words and our story with a larger audience. I found a publisher, and Alzheimer's Canyon, the book, is coming this November!

Please share this info with your local bookstore, and your local library. Spread the word!

I'm happy to come for a reading as well. Just let me know.

Here's the link where you can read more:

Thanks for being there. It meant so much to Sky.

Tuesday, February 23, 2021

Jane: The End is a Beginning

And, just like that, it’s over.

After being completely “normal,” entertaining the staff and residents with his songs, humor and antics, Sky was unable to bear weight on his left leg on Monday, February 15. X-rays showed no break in hip or pelvis. Doctor and staff were puzzled. He continued to not be able to bear weight, and cried out in pain whenever he was moved.

On Tuesday afternoon, I was granted permission for a “compassionate care visit” — my first time to be with Sky up close and personal for almost a year. On Wednesday morning, I arrived at his facility, I gowned, gloved and masked and was taken to his room where he sat uncomfortably in a wheelchair. I spent so much time hugging and kissing him, looking into his eyes. He was mostly unresponsive, but later “came to,” called me by name, and said, “I know what I’m ready for.” “The next world?” I asked. “Yes. I just want to rest.” Then he went to bed for a nap, and he fell asleep while we held hands.

An enormous burden was lifted. I was allowed to visit him whenever I wanted.

I returned on Friday to watch his physical therapy appointment as the therapist worked his limbs and tested his strength to try and get him to stand — not to walk, but to be able to easily transfer from bed to chair and back again without using the Hoyer lift. He cried out “no!” and was in pain, and he physically tried to resist her moving certain body parts. Eyes closed, hands clenched. He was not a happy camper.

Later, when we were alone, he opened his eyes, looked at me, and smiled his sweet smile in recognition, then closed his eyes. My plan was to return on Monday for his next PT appointment.

Saturday evening I got a call from the nurse. He had aspirated some liquids, and seemed to be losing his ability to swallow. Was it OK for him to have a pureed diet? How about no diet? was my reply. Sky’s greatest fear was that people would try to feed him when he did not want to be fed. I suggested stopping food altogether (they did)… then I asked, “Should I come in the morning?”

“Yes,” was the reply.

So Sunday morning, I packed a bag, left out enough food and water for my cats, and headed south to his facility. When would I be back home?

When I arrived, his breathing was very labored and I was sure he would die any minute. His out-of-state sisters all spoke their goodbyes to him with my phone held to his ear, and our kids — who live locally — arrived for their visits. Visiting is awkward with gowns, masks and gloves — damn this pandemic — so we didn’t really have the family-hang-out time we would have had without Covid-19.

Sunday evening around six, he had about an hour of fairly lucid talking and singing — though we could only understand about a quarter of what he said his voice was so soft, and Dana and I are not that great at “Name that Tune.” At one point he said, “The end is near.” Dana asked, “How long?” Sky replied, “Four or five.” Though when Dana pressed him, he could not say four or five what. We let it be. He closed his eyes, and drifted away. Dana went home, and the staff brought in a cot for me to spend the night.

Monday was a day of vigil, phone calls, texts and emails to friends and family. I wanted to break the news that Sky was dying and not have people learn that he died out of nowhere. It was bittersweet. It was hard to explain to people that I was both very happy and very sad, all at the same time. Sky remained unresponsive, but not in pain, throughout the day and night.

Monday night into the wee hours of Tuesday (today)were a struggle for me while Sky “slept” along peacefully, thanks to the tender care of the staff. It was hard for me to sleep listening to his breaths, wondering if the next one would come or not. I managed only three hours, and finally got up and sat by his side until dawn.

I steeled myself for another long day of vigil as his condition, his breathing, had not changed in 36 hours. I was exhausted, and I wondered how long this could go on, how long I could go on.

The staff got me a delicious breakfast, and I was eating as the aides were bathing and changing him. He was on his side facing me, and it looked like he wasn’t breathing… but then I saw a small breath. The women settled him onto his back, and then called to me.

He was not breathing, a blank look on his face. We all stared in shock, he took a tiny breath, and then was still.

My beloved and best friend is gone from this earth. I will miss him dearly. But I am so glad this is over for him… and me.

Thank you all for following along on our journey, This blog meant the world to Sky.

Sunday, January 31, 2021

Jane: The Light Grows

It is almost February 2nd, halfway between the Winter Solstice and the Spring Equinox. It was five below zero (F) this morning when I got up, and now it has warmed to a balmy six above. The sun is out, not a cloud in the sky, and no wind. I spent a little time outside, and with enough clothes on, it was actually pleasant. I watch the people out ice fishing on the lake -- some have been out since dawn -- and know that they are more rugged than I am. I like winter, but I am thrilled that the days are getting longer. The sun warms my house, and my spirit.

Sky (and most of the staff and residents of his facility) has received both doses of the vaccine. No side effects have been reported to me. That's good. But the "side effect" that I wait for is a change in the visiting policy. No word on that yet.

I continue with Zoom "visits" with Sky, and the occasional phone call when he wants to talk with me. At the scheduled Zooms, I never know what will happen. One day he was "hiking" and had to get going, and the staff member graciously held the tablet next to Sky while he walked up and down the halls. Sky and I didn't speak much, but the staff member and I did, and I told him tales about Sky and his long distance hiking experiences. Although I wasn't able to interact directly with Sky, I was pleased that the staff member knew a little more about him, and who he had been, and that perhaps that would help in their day-to-day interactions.

Sky continues to fall periodically, and hurt himself in other ways. When he does that, the nurse is required to call and tell me. One time he hurt himself because he was on his hands and knees "fixing" the toilet. Another time he was on his hands and knees escaping a war. But whenever the nurse calls (with the calls aways beginning, "It's not an emergency!"), she then goes on to tell me something Sky did or said recently that they found endearing.

"Your man is so funny! We just love him! One time when it was National Grandparents' Day, he said, 'Been there, done that, it should be National Masturbation Day!' and we all burst out laughing. (OK, so Sky used to be a sex educator... this didn't surprise me....) Another time she said, "Sky just came around the corner and whispered to me, 'We should smoke some pot!'" (I could only roll my eyes and comment, "And he probably doesn't even know that it's not illegal anymore.")

I get reports of the calls he has with his daughter, Dana, and his sister, Mary. They find the same things as I do -- sometimes he's talkative, sometimes he's not, sometimes he can lift his head to look at the screen, sometimes he can't, sometimes he can answer questions, sometimes he can't, sometimes he can finish a thought, sometimes he can't.

But we all agree that we can still see Sky there -- a tip of the head, a shrug of the shoulder, a chuckle, a song, a smile, a brief flitter of recognition when he can look at the screen. When he was first diagnosed, he was so worried about losing himself, but that hasn't happened. Sky is still there -- it's just that sometimes he can't communicate that in words.

My garden seeds arrived a few days ago, and I've got a big bag of potting soil ready to go. It's too soon to plant the seeds, and I must be patient. But with the growing light, and the passage of time, I know the day will come when I can nestle those seeds in the soil. Then I will, once again, have to be patient as I wait for the plants to emerge. Those of you who know me well, know that patience is not one of my virtues, so this is good practice for me.

Maybe with spring, and sprouting seeds, I will finally be able to visit Sky? In the meantime, I stay snug at home, grateful for the growing light.

Thursday, December 24, 2020

Jane: A Bittersweet Christmas Eve

Thirty-five years ago today I packed up most of my belongings and put them in storage. Into my car went some clothes, a few favorite books, and my pillow along with my four cats, Sage, Fern, Charlotte and Violet (none of whom was too pleased). We headed north. Two hours later I arrived at my new home, Frog Run Farm, a commune in the Northeast Kingdom of Vermont, where Sky lived. (Sage howled the whole way.)

Sky met me in the dooryard. We took the cats to the dairy barn, their new home. We loaded my clothes, books and pillow into two backpacks, put them on, and began the one-mile trek uphill into the woods to our new home. For the previous two months, we had built a small, one-room cabin in those woods with a sleeping loft, wood stove, and outhouse. It was my first adventure in house building. Before that, I was lucky to be able to figure out how to install a shelf.

It was the first day of my new life -- living with Sky. We had only been together for the previous ten months, but we both knew it was time to take the next step. With a light snow falling -- as it is supposed to do in Vermont at Christmas -- we settled in for the night. In bed, we held hands and sang Christmas carols, a tradition we would uphold for the next thirty-four years.

Thirty-four Christmas Eves and Christmas Days. First Dana came along, and then Sayer. We did all kinds of different things to celebrate the holiday -- there are plenty of stories to tell. When Dana was almost two, we started the tradition of lighting one more candle every day until Christmas Eve. Dana loved the candles, but mostly she loved putting out the candles with the snifter. That tradition has remained --  wherever Sky and I have been living during the month of December.

This year is different. Dana and I visited with Sky via Zoom this morning. He was pretty out-of-it, seemed sleepy, but with a staff member's urging, finally focused on the computer and our faces.

"You're alive!" he exclaimed. "You're alive!"

"Yup," Dana and I both answered. "Did you think we were dead?"

"Yes, yes! You were in a terrible accident, Sayer, too. You were all dead. You're not dead?"

"No, we're fine. Sayer, too. I guess this is the best Christmas present ever!"

Sky smiled.

"Well, at least he knows who we are," Dana and I agreed.

Tonight it is 50 degrees and raining. But no matter the weather, I light the twenty-four candles and pour myself a glass of wine. I may or may be able to bring myself to sing any Christmas carols once I'm in bed. I am sad beyond belief, yet so grateful that Sky is getting excellent care -- and that he knows that we are alive.

Merry Christmas to all who celebrate. And blessings on all of you in the New Year. May I be able to touch Sky again. And then we will sing.

Friday, November 27, 2020

Jane: Thankful

I sit here at my desk looking out on yet another gray November day. The clouds hang heavy, there are scattered rain showers, and the lake, for once, is calm. Before too long I'll go out for a walk, warm enough to be pleasant. Yesterday I was also sitting here at my desk, and I watched a fog bank roll in just as the sun was setting -- peeking out behind clouds only to disappear. That's November for you.

It's quiet. Just like it was yesterday, and the day before, and the day before that. I live alone now, the first time in over 35 years. The only sounds I hear (when I'm not watching Netflix or listening to music) are a periodic cat meow, squeak or purr, birds chirping at the feeder, an occasional passing vehicle, and the wind in the trees. I am as close as I can be to the natural world without actually being outside. I miss being outside. I miss working in the garden, swimming, kayaking, and having the windows open all the time. But I am very thankful for my strong, secure, and warm house.

Yesterday when the fog bank rolled in, I was having a Zoom call with Sky. With the escalating cases of Covid here in Vermont, we're back on lockdown, and Sky's facility cancelled all in-person visits. This was our second Zoom visit, and how much better they are than in-person visits! What a gift that I don't have to decide whether or not to make the trek to struggle with yet another uncomfortable, painful and frustrating in-person visit. On Zoom, Sky can actually see me, and I him. He's in the secure space of his own room, door closed, quiet and peaceful. A staff member is with him, to handle the technology, and answer any questions. Sky can end the call whenever he wants to. I can see his room. It feels much less stressful for both of us.

He didn't say much yesterday. He didn't realize/remember that it was Thanksgiving, despite having just had the big holiday meal with the other residents. Sky was never a big Thanksgiving fan, though he always liked to eat what was served. Then when I was the minister in Derby Line, he decided the best way to celebrate the holiday was to offer a free meal to anyone who wanted one. He gathered volunteers, and procured donated food from stores and farmers. The ladies of the church got out the white tablecloths and festive china and set the tables. The children in Sunday School made placemats, and everyone cooked. The first year we served 35 people, and six years later, 225. It was great. When I reminded him of all that, he just smiled, nodded.

"You're very quiet today," I said.

"I just want to look at you," he replied.

And for that I am extraordinarily thankful.

There is so much to be thankful for. I am thankful for Zoom. I am thankful for the caring staff who watch over Sky for me. I am thankful for the love and support of my family and friends. I am thankful for Tubby and Pogo, my feline housemates. I am thankful for all the natural world has to offer -- sun and clouds, wind and rain, snow and trees, wild food and good soil to grow more. Chickadees and squirrels, geese and ducks, worms and ladybugs, spiders and frogs. Rocks and mountains, lakes and rivers, bogs and oceans. 

Even though these strange times keep us from doing so many things we would love to do, we can be thankful for the simple pleasures -- a hot cup of coffee or tea, the peacefulness of a snowfall, snuggles with a pet, a good book, a phone call with a friend.

Or take some advice from Tubby and Pogo -- have a nap!

Hang in there, everyone.