I wrote this a few weeks ago, but haven’t been sure if I would share it or not. But I think it’s time I started blogging more.
There are no Mother’s Day cards appropriate for my mother. When I was young it was easy. A card made at school, some flowers liberated from the neighbours garden, undercooked pancakes in bed. The effort was on my mother’s side, pretending my scribblings were a work of art as she scrubbed maple syrup out of her sheets.
I tell myself I have to do this, it’s Mother’s Day, and I have enough guilt. My heart starts beating faster as I pull up to the care home. Maybe it will be a good day and I’ll see recognition in her eyes as I kiss her hello. Maybe she’ll be asleep so I can just leave the card and flowers and flee. I’m not sure which one I wish for.
My mother is in the end stages of dementia. I have watched her die, piece by piece, over the past six years. I’m waiting for that final piece to go, for her to be free. For me to be free.
“It must be so hard for you,” people say. I nod politely, arranging my face into what I hope is an acceptable mix of acknowledgement of the hardness and appreciation of their sympathy. I think they know as well as I do that hard doesn’t begin to describe it. But what else is there to say? Just as there are no Mother’s Day cards, there are no words. We don’t talk about dementia; we don’t know what to say to those suffering from it, or those affected by it. We need to give people the words.
It was when my dad was dying that mom’s symptoms first really started showing up. For three months my dad was ravaged by cancer, and instead of drawing on the family for support, my mom became increasingly suspicious of them: paranoid delusions, the medical term, but also such a loaded and fraught term. My uncle had changed my dad’s will to take all his money, my cousin was coming into the house at night to poison our food, my aunt was stealing things from our house to sell online. I didn’t know it was dementia then. I was just angry at my mother for making it even harder than it should have been.
I wonder, now, if dad had been covering up mom’s condition. I wonder if the stress of having to manage a house, pay the bills, do the things my dad had always done was too much for her. I wonder if I wrapped myself so tightly in the shell of my own grief partly to blind myself to her struggles.
A year later she ended up in the hospital, the paranoia and disordered thinking finally becoming impossible to ignore. Her house was littered with pages full of license plate numbers of cars that were following her, notebooks of noises the people in her walls made, copies of police reports about the neighbours shining lasers into her house. She was diagnosed with frontal-temporal dementia. The doctors said she couldn’t live on her own. Unable to recognise in herself what everyone else was seeing, she refused to move into any sort of supported living. So I quit my PhD and moved myself, my husband, our dog, and our soon to be born son from England to her house in Vancouver. And it was ok, for a while. With someone there to reassure her, someone to manage things, she seemed to get better.
Then one day my husband came home and found her on the floor. A stroke, the paramedics thought, but CTs and MRIs disagreed. Hmm, the doctors said, we don’t know what this is. Seizure was the best they could come up with, so they put her on meds and sent her home. These episodes kept happening. We’d find her incoherent, confused, non-responsive. She’d spend a few days in the hospital, then come home, each time leaving a bit more of herself behind. She could no longer drive, then she could no longer cook herself food, then she could no longer be alone in the house. I shuttled between doctors and daycare, tried to fit in my PhD work between driving her on errands, set up a complex system of ‘visits from friends’ so there was someone with her when I had to be at work.
We finally convinced her to move into and assisted living facility (if a two-bedroom apartment in a posh retirement community can really be called a facility). The pattern of ‘episodes’ (mini-strokes? seizures?) every few months continued her step-wise decline. I dreaded the phone ringing, the nights in rigid plastic hospital chairs, chasing doctors who couldn’t tell me anything. I was angry at her for being in the hospital. I was angry at her for getting better. Then last summer she didn’t.
Status epilepticus – repeated seizures that grip the body for hours, days. Finally the doctors could actually see the seizures happening, not that it mattered, not that there was much to do. Seizures, wrapped up with dementia, and something called cerebral amyloid angiopathy. Plaques hardening the small blood vessels in her brain until the mere act of blood moving through them shattered them like glass. Were they caused by the seizures, or were the seizures a result of the brain overloading as blood got re-routed? Chicken or egg? Does it even matter?
This time she didn’t recover. We moved her into a long term, advanced care facility, where there are round the clock nurses to feed her and dress her and wipe her ass. So much of her brain is dead, the doctors told me, looking at the scans. She won’t live till Christmas. Yet Christmas has come and gone, it’s once again summer, and she’s still here. Somewhere.
I push open the door to her room, holding the flowers in front of me as an offering. As a shield. She’s sitting in her wheelchair, the TV tuned to some old black and white musical, the type she used to love. She looks up as I greet her, looks surprised as she grunts an acknowledgement. I put the flowers in a vase, sit next to her, and start to read her the card – To A Special Grandma, Happy Mother’s Day, Love James. But she’s gone again, as remote and unreachable as the grainy dancers on the TV.