On sunshine and shadows

My mother-in-law, Jean Mottershead, has died. She would have been 85 next month.

I vacillated about how much of this event to process publicly. After all, her story isn’t mine to tell, and I’m not sure how she would feel about how I’m characterizing her here.

A decade ago, Jean discovered that her 95-year-old mom had gathered genealogical material and started compiling a memoir but had gotten overwhelmed and shelved the project. Determined to bring her mother’s vision to fruition, Jean spent hours on the phone with her, a province away, and ended up with a 60,000-word manuscript and a collection of photos, maps, and other documents that catalogued both her mother’s and father’s families. I offered to edit, design, and index the book, which the two co-authors self-published, making the PDF available for free and print copies available via IngramSpark. I remember feeling a consuming urgency to finish my work on the book, In Sunshine and in Shadow, hoping every day that I wouldn’t wake up to the news of my grandma-in-law’s passing before she’d had a chance to hold the finished product. We made it with, as it turns out, plenty of time to spare: she lived for another 5 years, dodging the COVID outbreaks that swept through her long-term care home and dying peacefully in her sleep at 102. [Content note for those who choose to read it: The book’s intended audience was extended family, and the authors do not grapple with some issues around settler colonialism that I would have flagged for someone publishing traditionally.]

The summer after the book was published, we took a trip to visit Grandma Smith together. She was as sharp as always and happy to see us, and we watched her play the piano and sing for the other residents in the facility. Most of them had been wheeled into the common area by staff, and some, clearly living with dementia, were nonverbal and expressionless. After we left, my mother-in-law expressed sadness for them and told us that losing her faculties and her independence was among her greatest fears. Those fears were probably multifaceted, and I’m not sure what was the primary driver. Ableism that we’ve all internalized, having been indoctrinated to believe that if you’re not productive, you’re useless, a burden? A recognition of structural ableism that leaves our elders abandoned and alone? The simple fear of losing control of one’s own body?

I wonder if any of those fears would have been allayed if she could travel forward in time to see the excellent care she would receive at the end of her life.

She did most of the things research suggests that we do to lower our risk of dementia: she studied Mandarin to keep her mind stimulated, she stayed active with daily walks in nature, she maintained strong social connections through her choir, and she ate good, nourishing, home-cooked food. When my father-in-law had a bout of shingles several years ago, she’d even been vaccinated, which researchers recently learned is protective against dementia.

But in the end, genetics won out. I hadn’t made the connection until she was diagnosed that her father had also lived with dementia. Nobody in the family ever talked about it. The last time I saw him, on one of our twice-yearly visits to northern Alberta, he didn’t recognize me and asked me questions that confused me. He was garrulous, which helped to mask some of his cognitive symptoms, and his family members would often swoop in and reinterpret what he said, keeping the flow of conversation going and glossing over verbal missteps. 

After years of working in mental health research and disability justice, I’d come to see dementia like any other health condition, and I sometimes forget just how much shame and stigma many people still attach to it. When Jean was first diagnosed with dementia, my father-in-law bristled at the very word. Shockingly to me, their doctor advised him not to use the word or “Alzheimer’s” when talking to Jean about her condition. I remember when, decades ago, the medical community thought it was a good idea to avoid telling cancer patients that they had cancer. I naively believed we’d moved past that.

Not being able to name the condition complicated my efforts to urge my in-laws to take part in dementia research. I’d seen through my colleagues’ incredible work how engaging in research can help people with a dementia diagnosis slow their cognitive decline. Participating in research or being part of a research team can give them a sense of purpose, hope, and ongoing social contact. I encouraged my father-in-law to explore this possibility with Jean, but beyond his own misgivings, options were limited from their island home in BC, at the height of the pandemic. At that point, Jean was already struggling with computers, and Zoom meetings with a research team would have been out of the question.

Ten years ago, Jean might have been aghast that I would write about her in this way. She would probably have preferred to be remembered for being an English and social studies teacher who worked with young adults from equity-deserving groups. Program coordinator and curriculum developer at an Edmonton college. A fiercely devoted daughter. A mom to two kids and a grandmother to one. A wife who saw her husband through his own health challenges, tirelessly researching and cooking the best foods to reduce cancer risk. A person who found joy in folk music. A bleeding heart who cared about social justice.

She was all that, but who she was at the end of life was also her. How could I simply forget the past half-decade, when her care brought out the absolute best in my father- and brother-in-law—a level of compassion and patience I’d never seen from them before? How could I dismiss the lessons I learned as I tried to find the best ways to communicate with her, many of which have directly informed my plain language advocacy? Or the fact that after a lifetime of worrying about the world’s expectations of how she should dress, act, and be as a woman, she let go of that baggage in her final years? How could I disregard the relief I felt seeing how well she was cared for by family, home care staff, respite care staff, and hospital staff—a kind of care I know not everyone gets but that serves as a model I will continue to push our system for?

I sang Jean my goodbyes this past weekend, when she was moved to palliative care. I don’t know if she heard me, but I know memories of music are some of the last to leave us, and I hope the songs brought her comfort. A small regret I have is that nobody sat down with her the way she sat with her mom, recording her stories and documenting a life well lived before she’d lost her memories and her words. Those of us left behind will have to conjure those stories on her behalf, and although they’ll necessarily be imperfect, the mosaic we cobble together might just be a passable facsimile.

Tell the people you love that you love them, while you know they can still understand you—and even when you’re not sure they can.