4/8/2019 Monday
“slumped in her wheelchair she looked uncomfortable. I struggled to get her more upright. She’s dead weight now. She smiled and looked into my eyes when I kissed her. (A flash of recognition?) She has been without language for a while now. And there are longer periods of time when she is clearly not connecting anymore. Vacant and passive. But this morning a little more Janis. When she smiled after the kiss, I was overcome, and I tried to hide this from her. It is what I live for these days, to just see her happy even if it is just a brief, buoyant moment.”
This is an entry from my diaries that I have included in the book. It was just a few days after a decision had been made to get her into hospice care. Later, that September 2019, she was dying. Hospice and her physician decided to move her into palliative care in a private room on the same Unit with the same staff taking care of her along with a hospice worker. I’ve been reviewing the book and wanted to include this entry in the blog. This was the beginning of a new period that continues today for me and for her. I spent a month living in her palliative care room with her, 24/7. I left only to get meals in the cafeteria and to shower at my son’s house a couple miles away. I massaged her and exercised/stretched her legs and arms. I talked to her. Lots of hugs and kisses. I slept near her and evenings I sat holding her hand while watching TV. She rallied and made an amazing recovery. Some staff called it a miracle. Her hospice nurse told me that in the 24 years she had been in nursing she had never seen such a comeback.
Today more than a year later, I find myself ruminating about this past year. Janis had managed to regain some of her earlier capacities, the one most notable was her previous limited ability to interact and connect with me and others around her. She could laugh and smile and though she was still in a wheelchair, she started trying to feed herself again. All this was, naturally, not a recovery from dementia, but a return to a significant degree of quality of life. It took some effort on my part to not hope for more miracles. But, that was not to be. Still, we could be together again, laugh and share affectionate moments; and I was grateful for that much.
Today, I can’t be with her because of the Corona – Covid 19 virus and the restrictions on visits. That month with Janis last year, is a treasure now. A gift that gave us an opportunity to feel close. I don’t know how much longer she can hang in there, but I feel we are losing time, precious time, not being together and holding onto each other. I can see in her face (or maybe it’s a reflection of my own face) a sense of confusion and sadness. We visit once a month for 15 minutes, separated by plexiglass, wearing masks. There is no conversation (she is deaf and has lost language). Strange how I look forward to these sad visits. I just long for that close proximity to her. But it is a new life living with Covid. It appears that we may be on the brink of a vaccine that might make it possible to start cautious visits without plexiglass, maybe later this spring/summer of 2021.
Meanwhile, I have returned to part-time work at Bowdoin College. It’s 2 days a week and I’m able to make my own schedule. Bowdoin College has been in my background since I started as supervisor of security in the college museum of art in 2007. I chose to go back to work, it has helped me structure my week…my time. However, I am not back at the museum of art. The museum is closed to the public and open only a day or two per week for administrative employees. I work in Security and my job is outdoors so I’m pretty safe wearing a mask. I am required to do a Covid test once a week and I am not in close contact with others. I also do childcare for my grandchildren a couple days a week for just a few hours. I love that contact, it keeps me smiling. I try to follow the news, but on a limited basis – too much craziness going on. I’m still in counseling and do this via Zoom a couple times a month. The rest of my time is spent on chores, housekeeping, and writing. I’m busy. I work out every morning. Hike. It’s good. Mostly good. I’m good. I’m healthy. I’m lucky. I miss Janis.
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The book, Entangled, is in the process of finding a publisher. I’m sending out query letters for publication.
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