CW // death and dementia
Christmas 2015 had a catch phrase in my family. “Merry fucking Christmas!” we’d giggle at each other. It was the year that we broke the news to my then 92-year-old grandmother that her beloved sister had died two days earlier. Nana had emigrated to Canada as a War Bride during World War II and her sister had followed a few years later. In true Scotch fashion she proceeded to get tipsy, singing “Have Yourself a Merry Little Christmas” repeatedly in my parents’ living room. She only stopped to periodically hold her empty wine glass on top of her head to signify that someone should get her more wine.
This scene unfolded while my sister and my husband cooked a turkey that overflowed oil into the oven. My sister took it in stride, mopped it up and threw the paper towels in the garbage. Half an hour later the garbage can was on fire. My husband ran out the door with it in a panic and dumped it in a snowbank to extinguish the flames.
As my grandmother proceeded to get more and more tipsy and more and more hungry, she asked what was taking so long. “Oh, Nana, we’re eating soon. The turkey’s just resting,” my sister answered. “Why?” asked Nana, firmly believing that turkey should be dry and potatoes boiled within an inch of their lives. “Well, it’s had a rough night,” answered my ever-witty sister. My mother and I cried with laughter and the Merry fucking Christmas catch phrase was born.
Christmas 2015 was also the year that we realised that something truly wasn’t right with my dad. We’d all had our suspicions, my mom especially, but it was that Christmas that the realisation really started to hit me. I had to keep sneaking into empty bedrooms to let the tears flow as I realised he was morphing into someone we didn’t know.
I’d seen my dad just six weeks earlier and could see a marked difference in those six weeks. That November, I’d flown home to Alberta to join my dad and his 70-something friends for their annual hunting trip. This was time with my dad that I relished, despite being the only woman and the only person under 60 on the trip. The hunting tradition had started the year I turned 23. I was broken-hearted after ending a relationship and leaving Halifax, a city I’d loved, gone to art school in and ultimately outgrown. I moved back in with my parents to figure out what to do next. I was miserable and my dad, newly retired, took me out into the woods to shoot grouse.
As I got older and moved to Vancouver, I’d try to come back every year, eventually gaining an invite to the November deer hunting trip. In my dad’s pick-up truck we’d drive almost to Saskatchewan, chatting away in the cab and only stopping to use the bathroom and drink a much needed double-double. We’d catch up with his buddies – also in pick-up trucks – and make a plan. I’d always end up walking through the bush to flush out the deer, rather than standing in the shooting line. It was serene and made me feel like I understood my dad better than anything else could. That year though, in 2015, I was starting to see that things weren’t going well inside my dad’s head. The second we caught up with his buddies he blurted out: “I’ve got a stroke.” This was the diagnosis that had come just a few days earlier from some doctor or other.
For my dad, the phrasing was odd. Always a juxtaposition, he’d spent the last couple decades of his life running a heavy duty mechanic shop and being around truckers, and he also had a Physics degree, had taught at the technical college in Edmonton and insisted that his daughters speak with perfect grammar. I was in hard denial and assumed that this stroke was merely a setback. He was going to start speech therapy and everything would be okay.
On the last night of the hunting trip though, I must have known something more permanent was happening. At the local motel’s Friday night hunter’s dinner I threw back several beers. Over prime rib and baked potatoes, the way only a rural, prairie motel can make it, I thanked my dad’s friends for letting a lady tag along on the trip. One of my dad’s friends, a lovely guy in his late seventies, laughed, several beers in himself and said, “well, you’re not much of a lady!” To me, it was high praise. As we got further into our cups and my dad left the table to go to the bathroom, the men asked me what was going on. “Well, he’s had a stroke and he can’t speak very well, but we’re hopeful that he just needs time and some speech therapy.” They nodded but there was a slight look of fear in their eyes. That look was something I came to recognise in people’s eyes the more we had to explain the situation: The fear that it could happen to them or someone they loved.
By that Christmas, the Merry effing one, I couldn’t really deny that something more sinister was going on. The speech therapy was hardly helping. That spring we were referred to a neurologist. “I’m leaning towards Alzheimer’s,” he said, the glaringly white parts of my dad’s brain staring at us from the PET scan image behind him. I held my dad’s hand, and none of us cried. We weren’t shocked, but it also wasn’t a diagnosis that sat well. Alzheimer’s patients put their car keys in the fridge, wandered off and mistook their daughters for their sisters, didn’t they? My dad did none of that. It was becoming more and more difficult for him to speak but he could still find his way to the curling rink and direct me to the cheapest gas station through a series of hand motions.
I spent nearly every second night that spring crying into my husband’s chest. How could this happen to my dad? He was one of the most intelligent people I’d ever met. He’d take me to the park as a little girl and if I climbed too high or got too scared, he calmly explained that if I’d figured out how to get up there, I could get down. He’d stay underneath me though, just so I knew I was safe. When I started having trouble with Math in high school – due entirely to my not doing my homework through most of Grade Ten – he patiently sat next to me at the dining room table, pulled out his university text books from the sixties and helped me figure it out through my own tears and frustration. When I decided to move to Halifax for art school, he bought me a rain jacket and told me to enjoy myself.
We never really did get a definitive diagnosis. The best diagnosis the doctors could give us in the end was frontal temporal dementia. Like all dementiae it changed my dad’s personality before robbing him of his ability to speak and eventually walk. In 2017, I gave birth to my first child, a daughter, and less than four weeks later she and I flew home to Edmonton because my dad had taken a turn. My husband and I had been in limbo in Vancouver for the previous 9 months, wanting to be in Edmonton with him but unable to leave my steady job on the precipice of becoming parents. Once I was on mat leave, we settled in at my parents’ house and my dad entered the hospital six days later. He was in the hospital for two months and then long-term care for two more. His descent was rapid and painful for our whole family.
Around Thanksgiving, we all visited him at the long term care facility. As we were leaving, the feeling that he had decided he was done washed over me. Two weeks later, on October 22, 2017, he died.
Grief is a funny thing. It’s not linear “they” say, and it’s true. The night he died I cried over my daughter while I nursed her, and barely slept. Then came the bustle of helping my mom make arrangements, accepting food from friends and a myriad of flower deliveries. My sister and I wrote a speech to give at his memorial and I assembled a slide show that tried to encompass his whole life. There were so many people at his memorial, they spilled out onto the stairs in the foyer.
After the memorial was over, the first year was punctuated with moments of great joy – it was my daughter’s first year on Earth, after all, but there were a lot of awful days too. I picked a huge fight with my husband on the eve of my dad’s birthday, which also happened to be our daughter’s first birthday. The first anniversary of his death was also hard. Despite living in a different city from my parents for 13 years, the longest I had gone without seeing my dad previous to that was 10 months. Hitting a year felt impossibly wrong.
The second year, I decided it was time to process things. I had a new job, and great benefits to go with it, so I found a good therapist and started working through it. Watching someone who was safety and strength embodied suffer from something as cruel as dementia, left images and feelings in my head that I didn’t want to dwell on anymore. With my therapist, we treated these images with EMDR, making the third year much easier for me.
Today marks the end of the fifth year. In a weird twist of grief, I’m glad he wasn’t alive through the COVID-19 pandemic. If he’d been in long term care in 2020 and 2021, not being able to see him and the worry that would have come with all of that, would have been too much to bear. But he also gained two grandsons last year, my nephew, his namesake whose face is so similar to my dad’s it makes you believe in reincarnation, and my own son who was born in late August 2021. I like to think he knows about his grandsons and somehow knows how funny and smart my daughter, the one grandchild he did get to meet, has become.
The acute pain of it all is mostly gone now but there are moments I wish he was here so badly I can barely breath. There are strange moments where I’m almost mad at myself for caring too deeply about what he thought about me and my choices. As well as knowing his grandkids, I wish he could see me as I’ve morphed into a veteran mother, become more confident in my career and enjoyed a happy and fulfilling partnership with my husband. This more durable grief has given me the knowledge that there isn’t much I can’t survive in this life. That may be the latest gift my dad has given me, the confidence that like the grief, I too am durable.
Kate Moore Hermes 