By Jane Dwinell and Sky Yardley, Alburgh, VT, USA
We were having so much fun! Sky and I had saved our money, and retired early in our mid-50s to travel and do volunteer work. Our young adult children thought we were, well, a bit crazy, but they supported us. We spent summers in France on our small houseboat, and winters in New Orleans helping people rebuild after Hurricane Katrina. It was a wonderful balance of adventure and being of use.
Until it wasn’t. Sky began having trouble driving the boat, losing his (formerly perfect) sense of direction, and, despite having built six houses and numerous outbuildings, struggling with his carpentry skills. As an RN who had at one time worked in a memory care facility, I feared he had dementia. But how could that be? He was 66 and in otherwise perfect health.
Then the diagnosis came — probable early stage Alzheimer’s.
We were stunned, though I was relieved to know what was happening. Sky, initially struck by terror and grief, embraced his diagnosis. He read everything he could about dementia, talked with everyone he met about dementia, started attending our local Memory Cafe, and then began writing about his experience. He wanted to do what he could to erase the stigma of this disease. We started a blog, and went on a public speaking tour around the country.
Sky loved chronicling his life for the blog. He said it helped him make sense of what was happening to him. I wrote some, as his care partner, beloved and best friend. It helped me make sense of what was going on as well, along with allowing me to vent some of my frustrations.
Caring for Sky became a family project. As his skills began to drift away, and his hallucinations escalated, I relied on our son, Sayer, and daughter, Dana, to help me tend to Sky’s needs. They also gave me space to care for my needs as well. But eventually it became too much for all of us. I was getting very little sleep, and my body was covered with hives. I needed a break.
Our local memory care facility had a respite program, and Sky and I went on a tour. He agreed to go for a period of respite — he had been looking for his “people” ever since his diagnosis, and there they were. He was happy.
I was delighted to sleep, and take care of myself. Then the pandemic hit. Lockdown. Life changed for us — for everyone. I was not allowed to see Sky, but we talked on the phone or on Zoom. Finally, I was allowed to be with him when he was dying — nearly a year later. He had been very clear with me about his end-of-life wishes, and it was a peaceful death.
But, now what?
I wanted Sky’s words to reach a larger audience than our blog. He had craved reading first-person accounts of living with dementia, and I wanted to add his voice to that elite group. I gathered our blog posts, added some introductory material, created a book, and found a publisher.
Alzheimer’s Canyon has received great acclaim, and is a finalist for several book awards. But, more importantly, several people with dementia say that Sky’s words match their own experience. Other care partners have been comforted by my words about my struggles to care for Sky and care for myself at the same time. People have appreciated our honesty, love, compassion, and creativity.
If you want to know the raw reality of living with dementia — as a person with dementia, or as a loved one, this book is for you.
Jane’s Bio:
Jane Dwinell is a retired RN, freelance writer, and Unitarian Universalist minister. She is the author (or co-author) of four books including Birth Stories: Mystery, Power, and Creation and Alzheimer’s Canyon: One Couple’s Reflections on Living with Dementia. She lives in northern Vermont with her two cats, Tubby and Pogo, and her garden.
Connect with Jane
Facebook: https://www.facebook.com/jane.dwinell
Instagram: https://www.instagram.com/janeforcare/
Website: https://janedwinell.com/
