By Jocelyn Reekie
Special to the Mirror
“January is Alzheimer’s Awareness Month – and, as we start a new year, it’s a great time to think about what we want the future to look like for people living with dementia, for caregivers – and ultimately for everyone!”
That quote was taken from the Alzheimer Society of BC’s website. In Campbell River, the city and the Seniors’ Hub combined to secure funding to establish a committee to assess community awareness with an aim to develop a plan to make our city a place where patients and their caregivers can live their lives to the fullest extent possible while they contend with dementia.
I’m a member of that committee. My husband had Alzheimer’s disease and together we lived with it for 15 years. This is the beginning of our journey with that disease.
When my husband was 55-years-old, I went to our family doctor and told him I thought Bill might have dementia. The lump in my throat was so thick I could barely get the words out, and as soon as they were spoken I felt both regret and relief. Regret that I couldn’t take them back. That now it was real. Relief that now it was real because maybe there was hope. Hope that something could be done to stop, or at least slow the progress of what I already knew was a disease that killed.
Our doctor looked at me with some compassion. We talked, or should I say he talked; I listened. If Bill agreed, the doctor said, he would refer us to the Seniors’ Outreach team. They would come to our house, where Bill would feel safe, to assess him. I said I would talk to Bill.
“Don’t worry,” our doctor said, “everyone loses their keys.”
But I knew he knew it was beyond that.
“Okay,” Bill said when I told him what I’d done.
And I could see the relief on his face. Like me, he’d known there was something seriously wrong. But until that day, neither of us spoke about what had slowly been becoming obvious for probably two years. Bill was having increasing problems learning new budget programs at work. At home he had difficulty following step-by-step instructions and lost his ability to do some tasks he’d done many times before. Minutes after something had been said to him, he’d begun to repeat statements as if they were things he’d just thought of. Tasks were left undone, either because he couldn’t do them or he’d forgotten they needed to be done. He was a born diplomat. He’d always had a slow-burning fuse, but his fuse was getting pretty short, and mine — never long — was becoming explosive. I thought he was being bloody minded. He thought I was…I’m not sure what he thought. We hadn’t talked.
We’d skirted the issues by trying to ignore them. By making changes to our lifestyle that were insidious because they were made with resentment on both our parts. And that led to more and more frequent arguments. We’d separated for some weeks; talked about divorce.
Each of us was afraid of the same things. If Bill had dementia, we would have to take on roles we were not suited for. For instance, I’d had to learn to install new bathroom taps, a home-maintenance job he’d always done.
For over 30 years, he had been a ‘boss.’ In charge of facilities with dozens of staff and budgets in the millions. He would lose control. Of his job, of his health, of his life. I’d had various jobs — all dependent on my ability to come and go as I liked. There was stigma attached to that sort of illness. We would lose our standing in the community. Our friends. Possibly our families. And one another. There was no cure. So, best not to talk about what was happening. Ignore it, or call it stress.
But that day the dam burst. Or the floodgates were opened. Whichever metaphor you prefer. That day we began to talk about what was really going on. To look our demons in the eye and begin to conquer them. To assess. To plan. To find out what help was available. To reach out. To grow.
According to a 2018-2019 report on the Canadian Alzheimer Society’s website, 25,000 new cases of dementia are diagnosed every year. Over 500,000 Canadians are living with dementia, and within 12 years, 937,000 Canadians will have dementia. It’s a worldwide pandemic. Like cancer is an umbrella term for hundreds of types of that disease, over 120 different types of dementia have been identified to date.
So, like cancer, the onset of symptoms for dementia differs for the different types. And as with any disease, it’s different again for different individuals. However, there are signposts that are common to many types. You can learn about those on the Alzheimer Society of BC website: https://alzheimer.ca/bc/en , or the Alzheimer Society of Canada website.
If you think you have dementia, or a loved one has it, you don’t have to go through it alone. There is help.
You can talk to your family doctor. A thorough physical exam might reveal another cause for whatever the symptoms are. If the cause is some form of dementia, your doctor can refer you to the appropriate health care professionals.
Or the Alzheimer Society of B.C.’s First Link® Dementia Helpline is available for anyone affected by dementia, whether professionally or personally. Helpline staff and volunteers give people the support they need, when they need it: 1-800-936-6033 (Monday to Friday, 9 a.m. to 8 p.m.).
Please don’t suffer alone. Reach out for help.