Matthew Vorstermans and his grandmother had a very special bond.
“My Oma lived in Pittsburgh during most of her life and I only saw her about once or twice a year,” Matthew explains. “Despite the distance between us, we maintained a great relationship. We wrote letters to each other and talked on the phone all the time. There was never a time where we’ve held a grudge or anything; we’ve always gotten along.”
Matthew was born with Cerebral Palsy, and sites his Oma as a great role model and support as he grew up. “She didn’t care that I had a disability. She was proud to have a grandson—before me she had only had granddaughters. The fact that I am disabled, she was indifferent to that. She said, ‘I finally have a grandson and I love that.’”
“All my life, Oma had always been right there to give me comfort, reassurance and companionship.”
The signs of dementia started to present themselves slowly. She struggled to recall details about her life, and her own family. That’s when Matthew decided to reach out to the Alzheimer Society, to help him understand the disease that was impacting his grandmother.
It was not long before the disease began to take a toll on his grandmother’s short term memory. Eventually she didn’t remember Matthew at all. That, along with the distance, took a toll on Matthew.
“As the disease progressed, in the last six years of her life, she moved to Nova Scotia. I wasn’t able to see her as frequently. I felt guilty. It was very painful.”
“I wanted to do something about the situation.”
Matthew contemplated how he could turn the feelings of sadness and helplessness into positive action.
“It took me a while to arrive at the conclusion, but I finally decided that as much as I’d like to be with and comfort Oma, I can’t, but I can do that for somebody else.”
Matthew contacted the Alzheimer Society of Simcoe County and began to volunteer, fundraise, and actively seek out opportunities to speak about his experiences. He began participating in the Walk for Alzheimer’s in 2007. Since then, he’s single-handedly fundraised $27, 815.36 for the Alzheimer Society.
“I’ve met a lot of people, particularly at the Walk for Alzheimer’s, who tell me that they like what I’m doing. They may have lost their husband or wife only a couple months ago, which is why they’re walking. I think it’s important to realize that, as painful as it is, you don’t have to wait until your own personal experience is over. You can turn that pain into positive action whenever you feel like it. It may even be therapeutic for you. It certainly was for me.”
“It is never too early, or too late to get involved.”
Are you ready to start fundraising for the Walk for Alzheimer’s? Join the Walk for Alzheimer’s today!
By: Kirsten Wreggitt, Chief Puzzle Constructor at Puzzles for Good
My Grandma made me pancakes in the shape of anything I could imagine – giraffes, Mickey Mouse, unicorns, and of course full moons. Those childhood breakfasts are cherished memories of family gathered together with Grandma at the center in her frilly apron. I remember that she laughed easily, always had a lap for you to sit in, and that she loved frogs. Of course, Kermit the Frog was her favourite, but I remember he was among many friends in the room I slept in at her house. That bedroom was filled with frog figurines on shelves covering each wall. There was no doubt that she was a fun loving person; a pretty perfect Grandma and a wonderful wife and mother too.
That is how I want to remember her, spatula in hand laughing with us at breakfast. Unfortunately, we also had to witness a slow and painful decline until we lost her to Alzheimer’s. At first she simply misplaced things or forgot a meeting, but over time it progressed to forgetting people, forgetting how to care for herself, and finally forgetting who she was. Such a terrible loss.
Many of us joke about forgetfulness and old age. I wish Alzheimer’s stopped with a little forgetfulness. The final stages of Alzheimer’s are no joke and it would be a wonderful thing if no other families had to witness or experience this loss of a loved one.
I am the owner of Puzzles for Good. It’s a social enterprise that creates word puzzles and shares the proceeds with organizations doing great work in the world.
I hold the memory of my Grandma dear to my heart and so I picked the Alzheimer Society of Canada as the recipient for this month’s puzzle pack.
Puzzles are great for brain health and are also so much fun! Get your Memory Puzzle Pack here.
As CEO of the Alzheimer Society of Windsor-Essex County, I am constantly reminded of the impact of dementia on the person with the disease and the families who care for them and grieve when they pass away.
I was so pleased in 2006 when our Society decided to create a granite Monument of Memories in beautiful Jackson Park for our 25th anniversary to remember all those in our community who have lived with dementia. We offered the opportunity to anyone in the community to have the names of friends and family engraved on the monument as a permanent memorial. We charge a fee for the engraving and funds raised from Monument of Memories stays in Windsor-Essex to support the current programs and services we offer to people living with dementia in our community.
The response has been incredible with the whole community rallying behind the effort. Local business, labour groups, media, former NHL player Ted Lindsay, whose sister had dementia, and local families – all impacted by the disease – all contributed. Over 250 people attended our unveiling ceremony in 2008.
We do the engravings once a year and continue to have a demand for spots on the monument.
It’s important to remember and be remembered. While we don’t have a cure yet, the Monument of Memories allows us to remember those who have passed away, and look after people now living with dementia and their caregivers.
If you would like to have a name engraved on the Monument, visit our website.
Chief Executive Officer
Chris Dennis is the CEO of the Alzheimer Society of Ontario.
Even though I ran half a dozen marathons in my youth, 20 years on preparing for number seven wasn’t as easy as I thought. Since I received my son’s ‘Christmas gift,’ which entailed signing us both up for the Ottawa Marathon six months down the road, I have trained through rain and snow. And then, just to add a little pressure, I decided to turn my run into a fundraiser for Alzheimer’s disease research.
Why have one challenge when you can have two?
There have been bumps along the way. In addition to the coldest February on record, my doctor diagnosed me with bronchitis a week before the race. But with a puffer and some meds, he sent me on my way. I was ready..err sort of.
And with so many people rallying behind my fundraising effort, I more than doubled my goal and raised $13,000. Expectations were high and I didn’t want to let everyone down.
On May 24, I ran my marathon. It was gruelling and a lot slower since the last time I completed one. Having never cramped up in my entire life, I got my first at the 13 km mark. Such fun! Four hours on the pavement is a lot more difficult than the three I used to clock in days past. And my son beat my time by 40 minutes, leaving no doubt that the torch has been passed.
I ran my race but will stick to 10 kilometre races for the future. But it’s an experience I won’t soon forget.
CEO, the Alzheimer Society of Ontario
When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.
I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.
From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.
Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers. Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.
He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.
On April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.
Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.
Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”
He was a wonderful example of someone living well with dementia.
Thank you Al. We miss you already.
Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario
Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford
“Thank you, Son,” is what I should have said. “What a great reason for some quality father/son time,” would have been better. Instead, I cried, “You did what?!”
That was Christmas morning 2014. My eldest son had signed us both up for the Ottawa Marathon. I was scheduled to run 26 miles, or 42 km, in less than 5 months.
I’m in my 50’s, I haven’t run regularly for over 20 years and I’m about 20 pounds heavier since my last marathon in 1995. I’d better take this seriously. Of course, training with my son motivates me; staying healthy to take on whatever other surprises he will send my way as he makes his way through life does as well; and using this day to contribute to dementia research is the crowning piece.
No cure or treatment exists. There are no ways to prevent the disease. Yet, I have learned I can do something about dementia:
- I initially set a fundraising goal of $5,000 to support dementia research, which I will match. As I’m writing this, my goal has been met… and surpassed! Thank you very much for your support. Now, let’s see how much higher we can go!
- With March being Brain Health Awareness Month, my colleagues have reminded me that physical activity is one of the four lifestyle choices (including social and mental stimulation, and healthy diet) that are good for you. And they’re good for your brain too, encouraging the development of new cells and new connections within the brain.
- And according to the Ontario Brain Institute, being physically active is associated with a 38% reduced risk of developing Alzheimer’s disease.
As I pursue these goals of staying healthy and raising money for dementia research, I have added to my training schedule a long-run every Saturday. Even mother-nature is urging me forward: this harsh winter of ours has offered balmy single-digit temperatures for most of those Saturdays with double digit lows for the balance of the week. I’ve actually started to enjoy running again, especially when I get in the zone, and realize I’ve just run another 10 k without thinking about running at all.
Not such a bad Christmas gift after all, right?
I would go to the ends of the earth for my family, so 42 kilometres seems quite reasonable. On that Christmas morning, I had no idea that his gift could mean so much for so many people.
Chris Dennis is the interim CEO of the Alzheimer Society of Ontario. Though he has many years of experience in the health-care sector, these past few months have offered him a unique window into this disease and he is committed to raising as much money for Alzheimer’s care and research as possible.