OPINION: MY MOTHER’S DEMENTIA JOURNEY: A CALL FOR ACTION
As we recognize Alzheimer’s Awareness Month in Canada, I’m moving into my 19th year of caregiving for my mother, who was diagnosed with young-onset dementia at the age of 54. For context, I turned 40 years old last September, and have been her caregiver for most of my adult life.
While the disease is insidious, stealing the person you know and love piece by piece, I find navigating the health-care system almost more traumatic than the actual caregiving itself. Unfortunately, dementia does not receive the attention or recognition it so rightly deserves.
Alzheimer’s disease, a leading type of dementia, is consistently ranked among the top causes of death in Canada. More than 770,000 people in Canada are currently living with dementia, with that figure expected to rise to one million by 2030.
Despite this, people living with dementia and their caregivers often fall through the cracks, because dementia care is fragmented, inconsistent, and difficult. Furthermore, access varies widely depending on geography, income, and local resources.
When my mother was presenting with cognitive issues in 2007, my brother and I sought help from our family doctor who provided a referral to a neurologist. At that time, the wait was over a year. This was valuable time when planning, treatment, and supportive interventions could help preserve her quality of life.
We took her to the emergency room at Edmonton’s Misericordia Community Hospital, where we were chastised by the doctor for seeking treatment under “false pretenses.”
This speaks to two reasons why obtaining a diagnosis is so difficult. People with cognitive impairment have an amazing ability to hide their symptoms when in the presence of a health-care professional. As well, doctors have not been fully trained on recognizing dementia symptoms and often don’t have the time to provide a thorough examination.
We were sent on our way to once again manage the delusions, psychosis, and wandering on our own. In desperation, we reached out to a crisis line. The Community Mobile Crisis Response recommended she be placed in Alberta Hospital Edmonton.
My mother was initially treated for bipolar disorder for six months, but after a positron emission tomography (PET) scan showed atrophy, or shrinking, of the brain, we were given a diagnosis of frontotemporal dementia.
In an instant, my whole life changed. I became the mother to my mother and was now responsible for making legal and medical decisions. We were advised to get a guardianship in place to oversee her affairs.
After 10 months of treatment in hospital, she stabilized. It was recommended that she be placed in a long-term care facility. We were never offered the option of taking her home with us with at-home care supports or referred to available clinical trials to stave off the disease. Unfortunately, although most people with dementia want to remain at home, access to reliable home care, rehabilitation, and community-based supports is limited.
Fast forward, almost 19 years and my mother is still at the same long-term care home, and sadly, not much has changed, let alone improved. While no one dementia journey is the same, to ask families and caregivers to shoulder the burden while trying to juggle family and job responsibilities, is not only unacceptable, but also cruel.
Over the years, I have had to become proficient in administration, accounting, nursing, and understanding policy and legal implications to provide the best care possible. As a long-distance caregiver, there is only so much I can do from afar. Families need clear pathways, guidance, and follow-up.
Dementia is not just a medical condition — it’s a systems challenge. Canada can, and must, do better. I support the Brainwell Institute ’s call for a national co-ordinating body to set standards, track outcomes, and ensure investments lead to real improvements, not just good intentions.
Dementia is a test of Canada’s values and readiness for an aging population. Are we ready?
Originally from Edmonton, Naomi Mison is a public relations executive. She is founder and CEO of Discuss Dementia, which promotes public discussion and advocacy relating to Alzheimer’s disease and other forms of dementia.
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