By Lisa Levin
One sunny fall day, my grandpa was driving me home. I think I was around 6 years old. As we were driving over a winding overpass, grandpa became disoriented and got lost. I had to give him directions to my home. It was my first encounter with Alzheimer’s disease and I was truly shocked. I could not understand how Grandpa, a brilliant scientist who had studied at Harvard, and done ground-breaking research at Johns Hopkins University, could get lost in my neighborhood.
Over half a million Canadians are now living with dementia and each year, 25,000 more Canadians are diagnosed with this illness. With the aging population, an estimated 937,000 Canadians will have dementia by 2031. That is more than the current population of the City of Ottawa.
Many articles focus on individuals who have Alzheimer’s and other dementias – detailing the slow torture of losing one’s memory and one’s ability to independently undertake daily activities. What is often excluded from the conversation is the heavy toll their unpaid caregivers face after years of unrelenting stress and exhaustion. They experience what some call the “long goodbye” as their loved ones slowly become incapacitated, piece by piece, over a period of time that can be as long as 10 to 15 years, or more. The care recipients may transform into volatile or even violent individuals, some suffer from hallucinations, and many eventually lose the ability to walk and talk.
Caregivers will often tell you it took years for their loved ones to actually be diagnosed with dementia. In the meantime, both caregiver and care recipient suffer in silence with little or no support.
It took seven years for Mary’s* husband Jack to be diagnosed with Vascular Dementia that was brought on by a series of mini-strokes. Jack had his PhD in Chemistry and Physics and took great pride in his vast knowledge of science. However, he soon began to forget even the simplest of things –like how to take a picture with his much beloved camera. Once a diagnosis was made, Mary and Jack received excellent support at Mount Sinai Hospital in Toronto where Mary attended the CARERS program at the Cyril and Dorothy, Joel and Jill Reitman Centre. The program helped Mary cope with Jack’s new and challenging behaviours. However CCAC home care was minimal. Mary only had three hours a week of CCAC support for most of the seven years she took care of Jack at home. This was particularly stressful since Jack was a wanderer. Despite his poor balance, Mary never knew when Jack would take off, with or without his walker. It could happen in the middle of the day or the middle of the night. She was always on high alert.
Mary finally had to place Jack in long term care. One of the most devastating moments was when Mary bent over to kiss Jack goodbye at the end of one of her daily visits Although Jack was non-verbal by that point, words were not necessary for Mary to know that her husband had no idea who was trying to kiss him on the lips. He did not “pucker up” as usual. Rather he was offended, upset and turned away.
Joy* began caring for her 93 year old mother Phyllis who suffers from Alzheimer’s and Lewy Body dementia two years ago. Phyllis was a strong and proud woman who had worked as a cook, and loved to make food. She hid her dementia from her children for many years. However, complaints started to come from the neighbors that Phyllis was burning her food on a regular basis. This was becoming a safety hazard for the whole building. Joy gave up her own apartment, career, privacy and independence, to move into her mother’s condo and care for her full time. Phyllis was able to get free home care from the CCAC – but for only half an hour each day. One wonders how Phyllis would have coped on her own had Joy not moved in. Once Joy began living with her mom, she realized Phyllis was having auditory and visual hallucinations. Phyllis would see imaginary people and bugs in her condo, and hear music that was not playing.
Caregiving for someone with dementia requires great creativity and patience. When Joy first proposed that Phyllis have a Personal Support worker come and bathe her, Phyllis was adamant that she did not want help. Joy finally got a Personal Support Worker to come in, despite her mother’s objections. The minute the worker arrived, Phyllis’s natural warmth and hospitality took over and she welcomed her with open arms. In Mary’s situation, her good nature and patience helped her deal with Jack, when he would put on his coat and take off on an unexpected walk. Mary would chase after him, catch up and pretend the stroll was a naturally planned part of the day.
Jack has since passed away and Mary is rebuilding her life. Joy is preparing to go back to work, and move back out on her own. She is under immense stress, and is transferring the responsibility for now, back to her siblings. Whatever your caregiving journey, it is important to acknowledge your limitations and seek help. The more support you get for yourself, the longer you can care for your loved one.
Where you can go for support:
Your local Alzheimer’s Society has many supports including support groups for people with all forms of dementia, caregivers, and family members; educational sessions; -day programs for people with dementia; and respite www.alzheimer.ca.
First Link – a referral service that connects newly diagnosed people with dementia to local health and community services, including their local Alzheimer Society. https://www.alzheimer.ca/en/We-can-help/Resources/For-health-care-professionals/first-link
Your local CCAC for home care – https://healthcareathome.ca/
In Toronto: Sinai Health System – Reitman centre carers@mtsinai.on.ca
*Names have been changed upon request of the interviewees
Lisa Levin is Chair of the Ontario Caregiver Coalition and is also the Principal Consultant for Lisa Levin and Associates where she provides services including strategic planning, marketing and communications and accreditation project management. She also provides Care Management services to help families navigate the home and community care system. She can be reached at info@lisalevinandassoc.com