When Rebecca walked into her neurologist’s office in November, she was anticipating bad news.
She had been experiencing mental ‘blips’ memory lapses, and mid-conversation blackouts for two years, but blamed them on stress.
‘I’ll just be fully engulfed in a conversation, super confident in what I’m saying, and oftentimes it’s like retelling a story, and then mid-sentence, out of nowhere, it’s just gone, like the information is gone,’ she told the Daily Mail.
‘It feels black for some reason, and blank. Now I’d say it’s 80 percent of the time I can’t recall what I’m saying.’
As a 48-year-old single working mom at a stressful job in child protection services, the British Columbia-native also believed her ADHD and, potentially, early menopause were playing a role.
But after failing a smattering of cognitive tests, MRIs showed parts of her brain had shrunk, and a spinal tap, doctors confirmed that she had early-onset Alzheimer’s disease.
The condition makes up a small subset of the roughly seven million Americans with Alzheimer’s. People with this type of disease often see sharper cognitive decline over a shorter period, and a life expectancy from diagnosis of about eight years.
Because of her poor prognosis, Rebecca has opted to apply for Canada’s medical assistance in dying (MAiD), choosing to end her life before she becomes completely debilitated by the disease.
Rebecca noticed mental ‘blips’, memory lapses, and mid-conversation blackouts two years ago. At first, she chalked them up to stress. A series of cognitive tests and MRIs would prove, though, that she was contending with early-onset Alzheimer’s disease
MAiD in Canada was previously limited to people whose deaths were imminent, typically around six months. But she can opt in now to use at a later date.
Her decision comes after a whirlwind couple of years that have upended her life as a multi-tasking single mother.
The first clue that her brain blips might be more than just perimenopause came on a typical work day two years ago.
‘I opened up my laptop – I was working from home – and I had zero idea how to do my job,’ she said.
‘And then I looked at my training notes, I still couldn’t figure out how to do the job.’
Rebecca decided to take time away from work, believing then that she was suffering from burnout.
To get her employer’s insurance plan to cover her long-term care over that year, though, she needed a new diagnosis.
At the time, she didn’t have a neurologist, so she went to see a psychiatrist for advice about her memory issues and how they might be related to her mental health history.
MRI and CT scans showed that her hippocampus had atrophied, causing her memory lapses, trouble accessing memories, and difficulty storing new ones
Rebecca has opted for Medical Assistance In Dying, the Canadian law that allows people who are likely to die to undergo legal euthanasia
A psychiatrist conducted the usual diagnostic tests for Alzheimer’s dementia, including a lengthy cognitive assessment that tested neurological functions by asking her to complete a range of tasks, like naming objects, counting backwards and drawing shapes.
Rebecca later underwent shorter cognitive tests for potential cases of dementia, like the Toronto Cognitive Assessment (TorCA), Neuropsychological Testing, or Montreal Cognitive Assessment (MoCA), and failed spectacularly.
Rebecca visited another neurologist for a second opinion in mid-2022. That doctor performed the same tests, as well as a spinal tap to look for signs of an abnormal protein that builds up in the brains of people with Alzheimer’s.
It wasn’t until November 2023 that she was given a diagnosis of early-stage Alzheimer’s. And since her diagnosis, her symptoms have progressed.
Beyond memory loss, she struggles with depth perception, balance, and spatial awareness.
Rebecca’s cognitive issues have boosted her lifelong social anxiety, making already difficult interactions with strangers all the more unnerving.
While the total number of people diagnosed is relatively small, the diagnosis rate of early-onset dementia and Alzheimer’s disease is increasing, especially in younger age groups
‘It doesn’t just show up in like, I’m telling a story and then I go blank,’ she said. ‘It shows up in my brain and my mouth. They don’t match the timing together properly.
‘I could be talking to somebody in a social situation, and there’s hesitancy in what I’m about to say…and I know what’s going on with me. It’s because my brain is processing information a lot slower than it used to.’
Given the rate at which she has noticed her memory and spatial awareness getting worse, she moved up her appointment to check on the disease’s progress by six months.
‘I’m off work currently, and I’m off work because the blips were happening quite regularly, and I think it’s because my capacity has changed,’ she said.
With work on hold for at least three months, Rebecca has set up a GoFundMe to defray the costs of her care and is now navigating the time she has left. She has finalized her will and squared away her life insurance policy.
She described her older daughter, 28, as a planner just like her and they’ve discussed the future, but Rebecca hasn’t had the same conversations with her younger daughter.
‘It’s harder to talk to her about that, but my older daughter is a planner, so she’s much like me, where it’s not emotional, it’s planning,’ she said.
Sometimes, she grieves for her daughters, now having to grasp the fact that their time together has gone from decades to short of 10 years.
‘They may not want to admit that right now, but I have been their beacon, and I have been their rock… and only thing that I am proud of myself for my entire life is how I’ve been able to show up for my children. And for them to lose that security terrifies me,’ she said.
‘I’ve worked in palliative care, and I worked in hospice, and death and dying does not scare me.
‘It’s actually the most beautiful thing I’ve ever witnessed. So I don’t have fear around that at all.’
Saved for a later date to be determined, Rebecca has put her name down for Canada’s legal Medical Assistance in Dying (MAiD), which allows people to petition for legal euthanasia.
When the Canadian government first issued the parameters around petitioning for the legal euthanasia, the criteria were strict.
People needed to have a ‘serious and incurable illness, disease or disability,’ be in an ‘advanced state of irreversible decline in capability,’ and have ‘enduring physical or psychological suffering’ that was ‘intolerable.’
Those rules changed in 2021, when a new law removed the criteria that the death must be ‘reasonably foreseeable,’ opening the door to assisted dying for conditions ranging from multiple sclerosis and Parkinson’s disease to blindness and chronic back pain.
MAiD deaths accounted for about five percent of all deaths in Canada in 2023.
MAiD is also legal in DC as well as several states: California, Hawaii, Colorado, Maine, Montana, New Jersey, Oregon, New Mexico, Washington, and Vermont.
To qualify, patients must be adult residents of one of those states, be of sound mind, and have a terminal illness with a prognosis of six months to live.
Over 23 years, more than 5,000 patients have died by MAID, while over 8,000 received approval for MAiD.
‘That is definitely a big part of my sharing my journey, is talking about that as well, because I know it’s fairly controversial, but that’s the route that my family and I have chosen,’ she said.
‘I’m a star planner, right?’