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.



13 comments:

  1. Love to you. So honored to have been able to travel this with you via this blog.

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  2. Holding you in my thoughts and prayers during this transition... I am so glad you were able to be with him.

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  3. Dear Jane,
    Our sympathy to you and your family. We share your sadness but also your relief.
    Thank you for including us in the Alzheimer Canyon saga. Reading the evolution of Sky’s sickness, year after year and month after month, gave us the feeling of being part of your Karass, as Kurt Vonnegut would say.
    It was poignant and sometimes funny to read Sky describing his own downfall. Reading your letters, later on, gave us each time a moment of profound reflexion.

    We still remember the day that we met, having moored our boats alongside a canal in France. Our cat Lola was wandering around as she usually did, each time we stopped for the night.
    Uphill, there was a little village, I should consult my logbooks to find the name of the place.

    Years later, you came to our boat in Paris, in the port de l’Arsenal. The weather was fine, we chatted, sitting outside on the quarterdeck. The same day you visited the Louvre.

    It would be a pleasure to meet with you again.

    Meanwhile, good luck to you, stay healthy.
    We wish you lots of courage in these difficult times.

    Love
    Guy and Marleen

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  4. I only knew Sky while he stayed at The Arbors, but I was fond of him. His ready smile an quick pace in the dining room, where I knew him best, will be missed. Hugs to you.

    Karen Fontaine

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  5. And, just like that...
    such tenderness and sorrow and relief
    it's indeed pause for deep reflection, but I can't quite get what's in my heart translated into word form...

    We've not really connected for a long time and yet I still feel a strong bond with you from way long ago.
    Holding you close with lots of love this evening.
    much love,
    Kimball

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  6. Dear Jane,

    It's with sadness I write after reading your post. Sky can be at peace now, which is good. You can rest knowing you were incredibly present for Sky.

    My husband Bob and I met both you and Sky when you so kindly traveled to talk at UU churches with people who are touched by Alzheimer's Disease. It was so kind of both of you to do this. I will never forget it. Both of you such interesting, down to earth people willing to reach other people who are worried, curious, angry about Alzheimer's.

    My mother died from Alzheimer's Disease in Jan. 2016 at age 85. She had the disease for many years. This is why I'm paying attention to it at age 67, and why I so appreciate you, and you and Sky, sharing so many things about your lives with Alzheimer's.

    Thank you for sharing your experiences. I want you to know how poignant a gift it is that you've given me. Thank you for visiting, and thank you for writing. I wish you all the best.

    With love,

    Debbie

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  7. Love to you, Jane. I’m sorry the Alzheimer’s Canyon reached out and took Sky, but glad for your snd his relief.

    This blog has been a gift. I’m deeply grateful to Sky and to you for sharing this journey. As Sky’s illness progressed, I relived my mother’s decline as well, both all too familiar and very different. There is so much love and kindness and courage in this blog. I know you will miss him dearly. But also that you will embrace life and share with him as you hold him in your heart.

    With love and deepest sympathy,
    Dorothy

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  8. Jane, sending love, so deeply sorry for this loss. I feel grateful to Sky and you for sharing this journey via the blog. While I followed Sky’s and your experience, I was also taken back to my mother’s decline. Such familiar territory yet different at the same time. The blog is so filled with love, kindness and courage.

    Perhaps when Covid restrictions ease, we can have a cup of tea or go for a walk sometime.

    Love and sympathy,
    Dorothy

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  9. Many years ago a touch therapist teacher told me nurses are often natural channels to assist people from this world to the next. So glad you were able to be there with Sky. I have no doubt your presence was a great comfort and help for him to make that final leap. Much love to you, Jane, and all Sky's family. Deb H

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  10. Dearest Jane,
    Sending love to you and your family on the passing of Sky. I knew him through Polly and have benefitted greatly from your beautiful blog. May you find joy in unexpected places.

    Love, Jenny Sinanan, Hoodsport, WA

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  11. Dear Jane. I'm so sorry to hear about Sky's passing. My thoughts are with you all. Hugs, Carol Maloney

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  12. Love and condolences to all who had the wonderful pleasure of knowing Sky. It was my good fortune to get to know and work with him decades ago in support of our Vermont Federation of Food Co-ops. Such an inspiration he has been in demonstrating to all of us how to be a loving, kind, compassionate and engaged human being.

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  13. Cousin Jane-
    Spirit of Life, come unto me. Sing in my heart all the stirrings of compassion. Blow in the wind, rise in the sea; move in the hand, giving life the shape of justice. Roots hold me close; wings set me free; Spirit of Life, come to me, come to me.
    Hear my voice in your memory as I sing this to you over the airwaves, with comfort I send.
    Love from G-Lover to Alburgh.
    Hal

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