I have a confession to make. I'm Canadian and I'm not a big hockey fan. It's terrible, I know. I actually have a lot of guilt over the fact that I don't love our national pastime. Don't get me wrong, I've sat intensely at the edge of my seat in the final seconds of a game, holding my breath for the win, but they've been shared experiences as part of our collective history, like Crosby winning the gold for Team Canada in an overtime win against the USA. Like most great moments in history, they don't happen often.
It's not like I don't have any connection to the sport. I live in a house of hockey. From the second my house is awake to just before it shuts down for the night there are hockey apps, standings, injury reports, highlights and podcasts to be viewed, posted, shared, tweeted and debated. My husband has played (and now coaches) for the better part of four decades. Both my kids play -- a boy and a girl -- and they do so with the fervour and gusto of some other 570,000 other kids across the country who see it as a way of life.
No fewer than three times a weekend, and sometimes much more often, I find myself in an arena, drinking tire-wrung coffee with the parents of other players, that unique perfume of old equipment and salt-lick popcorn thick in the air. I'm not a hockey mom, but I could play one on TV.
I don't scream in the stands, pick fights with other parents over the lack of a good defense, and I admit I've been known to bring work -- or the paper -- to an occasional tournament, choosing politics and plays on the floor of the House of Commons over those on the ice. Never during the playoffs, of course. I get that.
I feel guilt about this, I do. Not because I feel a need to love the game our country adores so much, but because it's just not in me to genuinely make the effort to share in the discussion that takes up so much cultural discourse.
So how, you might ask, does a gal who regrettably has the playoff highlight reel as the soundtrack to her life come to be involved in the Scotiabank Pro-Am for Alzheimer's™, the country's premiere hockey experience? What do I -- an admittedly unfaithful Canadian to our country's first love -- have to do with a group of NHL alumni? Well, like so many things about Baycrest Health Sciences, I'm in it for the research -- but it touches my life personally.
The Scotiabank Pro-Am for Alzheimer's™ in support of Baycrest is the ultimate hockey experience for the lifelong player who's always dreamed of playing with the pros. The three-day tournament allows weekend warriors -- and those who always thought they really had the chance to go pro (you know who you are!) -- the opportunity to lace up and hit the ice with some of hockey's greatest legends, including Wendel Clark, Marcel Dionne and Doug Gilmour. Now in its eighth year, the event has raised over $20.5 million dollars with funds going towards Baycrest's research and care in Alzheimer's and related dementias.
If you've ever stared across the face of Alzheimer's then I don't need to tell you how ugly a disease it is. Watching someone you love get slowly erased, one memory, action and gesture at a time is a painful plunge into an ever-deepening abyss. And as hard a toll as it takes on the patient, it wrecks equal havoc on the lives of family and caregivers who must renegotiate their lives, placing care first and foremost as they remap best-laid plans, reorganize their everyday activities and relearn what it means to care for an aging adult. It's not for sissies, as my family is wont to say. But that's the thing about this disease; you don't exactly get a choice.
Ask Doug Gilmour. The Hockey Hall of Famer welled up with tears at our recent Scotiabank Pro-Am media shinny when he announced that this year's fundraising will hit closer to home having lost his father seven months ago at the age of 81. "The last three months he had dementia," Gilmour said, holding back tears, "So it makes you understand what it's like for people to have to go through this." You could have heard a pin drop when the former Leaf's Captain shared the story of his father's last months in a room filled with a seasoned crowd of journalists and an impressive list of NHL alumni. And everybody got it, nobody was left unmoved. That's because it touches so many of us and everyone is collateral damage in the wake of the disease.
A 2010 study by the Alzheimer's Society of Canada reveals that the prevalence of Alzheimer's and related dementias will almost double in the next 25 years, accounting for a tenfold increase in the economic burden during this time period. Victims of the disease - which today alone affects an estimated 500,000 Canadians, or approximately 1 in 11 -- will not be the only ones affected. Family members, the health care system and the nature of our community services will all have to accommodate these frightening numbers. Within a generation, the number of those affected by these diseases could be as high as 1 in 5, with Alzheimer's affecting between 1 and 1.3 million people.
But there is hope, and it lies in the research and care that Baycrest provides. Our Rotman Research Institute, one of the world's top research institutes in cognitive neuroscience, is working to identify the cause of dementia in order to prevent it. We are looking to not only intervene in older adults who are experiencing mild cognitive impairment, but prevent it with diet, exercise and revolutionary non-invasive technologies that include mapping your eye movements to determine how memory declines with age or brain damage. We are even developing the Virtual Brain, a computer model which will be able to capture intricate details of your brain structure and function.
That's why some 30 NHL alumni are running to "stick it to Alzheimer's" May 2-4 at Canlan Ice Centre at York University. It's why Gilmour, Clark and a who's who of marquee players are teaming up to fight the disease by supporting Baycrest research. And it's why a reluctant hockey mom like me has any interest in hobnobbing with a roster of NHL elite. It ain't for the autographs, baby, it's actually for my babies. We have an opportunity to make a difference and that's what I'm playing for.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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