In this guest blog post, alumna Jane Dwinell describes how her husband Sky Yardley’s experience with Alzheimer’s Disease led to their blog and co-authored memoir of his illness: Alzheimer’s Canyon: One Couple’s Reflections on Living with Dementia.

_______________________

In 2013, my husband, Sky, and I were at loose ends. We had retired early in 2007 to travel and do volunteer work. We had had a great time, but we both were considering going back to work. He had had a successful practice as a family mediator. I had spent my years first as an RN, then as a Unitarian Universalist minister. He pondered reopening his practice. I pondered taking up Bioethics, found the program at Union, and applied.

I had a wonderful time during my year (2014-2015) in the program. It was great working with my classmates and faculty. I learned so much and looked forward to taking up this new career.

But it was not to be. Sky was still at loose ends, or so it seemed, not able to focus on anything. Was he depressed? Was this some kind of later-midlife-crisis? I watched him wander around, aimless, taking up this activity, then that activity. He finally found some rewarding volunteer work with the court system. Finally, all settled!

Then I noticed that this man, formerly with a perfect sense of direction and spatial skills, could no longer read a map or do carpentry work. I suggested he see a doctor and get tested. I had worked in a memory care facility for a few years, and I wondered if he had early dementia. He refused.

Finally, with some additional pressure from our adult children, and the growing awareness that he could no longer do carpentry work like he used to, Sky agreed to testing. In August 2016, he was diagnosed with “probable early-stage Alzheimer’s.”

Our world was turned upside down. No bioethics career for me. I knew my job now was to take care of Sky. What Sky wanted was to find other people with dementia (his “people”) and talk about it. He wanted to read about it, learn about it, talk about it with anyone who would listen. He read everything our library had to offer, and then some. We started a blog where he chronicled his life experiences. We went on a nationwide speaking tour, offering our “Living with Dementia” sermon and workshop. Gratefully, Sky was very clear with me and our children that he wanted no “life-sustaining” measures as time went on. He was afraid of being force-fed and kept alive without his consent.

Then he began hallucinating on a nearly twenty-four-hour-a-day basis. After a year of getting very little sleep, I needed a break. He agreed to a two-week respite at our local memory care facility. I could relax, get some sleep, read novels, and do what I pleased. That was in March 2020. So much for a two-week respite! With the sudden pandemic lockdown, I was not allowed to see him, and if I brought him home from the memory care facility, I would not be allowed to bring him back. So, there he stayed — quite happily, in fact. He had finally found his people. It was a strange year as I watched him decline from a distance, only being allowed phone calls, Zoom meetings, and, for a brief while, in-person visits, masked, outside, six feet apart.

In February 2021, Sky suddenly could no longer walk, and then a couple of days later, lost his ability to swallow. He was dying. I was finally allowed to be with him at the facility — three days of a peaceful, emotional vigil. Our kids came for a brief visit, his sisters spoke to him over the phone, and the staff regaled me with tales of his antics over the past year — singing Grateful Dead songs, mediating disputes among residents, telling jokes. It was a lovely time, made that way because Sky had been so clear about his end-of-life wishes.

After he died, I turned our blog into a book, and I’m pleased to announce that it is being released November 1st. As you can imagine, books written by people with dementia are few and far between. I’m honored to add Sky’s voice to that elite group. Please ask your local bookstore to carry Alzheimer’s Canyon (one way in, no way out), and get yourself a copy, too! I’m also available to speak at your local bookstore, library, or house of worship. You can reach me at janedwinell@gmail.com.

May everyone have such a peaceful transition into death.

_______________________

Alzheimer’s Canyon: One Couple’s Reflections on Living with Dementia is available at Rootstock Publishing.

Share this post

Leave a Reply

Your email address will not be published. Required fields are marked *