This week, the federal government unveiled a $50 million National Dementia Strategy. The stats are clear: we need this. More than 419,000 Canadian seniors have been diagnosed with some form of dementia, and in the next 15 years it’s estimated that one million Canadians will follow into the void.
Caregivers for those with advanced dementia will tell you that the investment in prevention and care is very much needed.
As for navigating the heartbreakingly turbulent waters of decline, there is much to say. My Middle today is to share with you the answers to: “if only I knew then what I know now.”
Dementia is a taboo topic. It’s hidden, veiled, guarded.
“Don’t tell anyone!” There is a major flaw embedded in the secrecy — when you face the first symptoms, the single most important thing to do is to act fast.
Take this as a heads-up -- there are no cures, but there are ways to try to stall this evil.
The numbers prove there is an ever-growing sandwich generation struggling with parents living longer with lower cognitive quality of life. The trouble is, I fear those numbers are flawed; they are “diagnosed” where so many never get to that point before it’s too late for modern medicine to help.
Yes, the signs are the misplaced purse found in the freezer, the lost keys discovered in the washing machine, the odd or inappropriate behaviour at the family gathering. Or it can be as subtle as quick, even vicious, temper that isn’t typical.
Don’t explain away the signs in the name of protection, signs that no one wants to admit they see are the key to helping your loved one live a better life for longer.
As I’ve shared in this space in the past, my Dad is suffering from Alzheimer’s. When diagnosed, being a born educator, he worked extremely hard to hide it. Eventually (too long) we did get him to the geriatric appointment (this should be renamed), and it was clear that he was slipping, if not sliding, down the slope of dementia.
Still aware and functioning in society, if only just, he and I talked about this path and he bluntly asked me – his daughter the journalist – to take note and talk about his journey, publicly. Ever the teacher, our Coach Vance.
Here we are, entering the scariest of times, taking his worldly belongings in two Rubbermaid containers to a Home that is a spruced-up hospital.
Every visit, we wonder if today will be the day that he doesn’t recognize us.
Every day we walk in and see a little more of the man we knew slip away.
Every day we curse this disease, and still we fight.
The meds he’s been on for seven-plus years have helped, a lot, holding incurable Alzheimer’s at bay.
The reason I want to write about this today is to offer a beacon for those facing the first signs.
The Middle that you cannot possibly know at the outset of “onset” is that the faster you start the process of diagnosis and treatment (not cure), the longer you will have the loved one you recognize.
When Dad was diagnosed, a very good friend took me for a walk and gave me some very harsh realities. Both of her parents had died from Alzheimer’s, she knew this road all too well. She didn’t sugarcoat things. She warned that it will rock you and your family, to the core — offering a few invaluable tips.
Get assessed. Ask for help. Be prepared for pushback from family who want to turn a blind eye to reality.
Get the right medication, as soon as possible. Meds are not an acceptance of defeat, they are the opposite.
This is how you fight.
Many worry about the stigma needlessly — if you don’t want people to know, don’t tell anyone!
The assessment is simple, consisting of remembering words, identifying the date, year, season, drawing a clock face, and following a few directions folding paper. The “Sage Test” is very simple and not to be feared.
If your loved one is pushing back on having one, being scared as hell, don’t tell them it’s happening. Talk to your GP, book the test and take them. Specialists can absolutely manage the process. People trained in dementia treatment know what they are doing. Let them help.
A list of truths:
- Alzheimer’s is different for everyone.
- You cannot “handle it” on your own.
- Correction, and frustration, are normal reactions but will see little progress.
- Trust those who know. Get on the waitlist even if you don’t need it for years.
- Dementia sufferers will wear the same clothes day after day, because they don’t know what day it is.
- Dementia sufferers will have poor hygiene. (When you forget what showers are about, they are scary as hell!)
There are so many truths to add to this list, and the experts have so many of the answers. Don’t waste a moment tapping into that knowledge.
It will take a Nation to support our fellow citizens suffering in this brand of confusion.
The more we know the more we can do to help.
Jody Vance is a born and raised Vancouverite who’s spent 30 years in both local and national media. The first woman in the history of Canadian TV to host her own sports show in primetime, since 2011 she’s been working in both TV and radio covering news and current affairs.
