**This story is adapted from a speech made by Laura at the YouQuest Fundraiser on November 2, 2022**
Hi everyone, I’m Laura, and my husband Rick attends YouQuest on Tuesdays. First – I’d like to thank you for supporting YouQuest. Your support means the world to our family, and all the participants, care partners, and families where Young Onset has made itself an unwelcome guest in our homes.
Rick and his sister received the news of their condition just weeks apart in 2016. Our boys, Riley and Owen, gave me a little time and permission to ‘catastrophize’, but in hindsight, the diagnosis just explained so many behaviours and life circumstances. In many ways, it was just a devastating relief. Relief is the wrong word, but it was the start to a deeper understanding of where Rick had been and where we were going.
I bumbled along, trying to figure things out as we went, mostly trying to get our ‘house in order’ so to speak, and we were extraordinarily fortunate to have the early support of medical professionals, our children, my employer, extended family, and friends. That is not everyone’s experience, so I want to call it out. Even through these early days, Rick’s insight and understanding of his diagnosis was extremely limited, and while that continues to be a blessing for him, it has made the journey more difficult for us.
Almost immediately, Rick had to stop working and driving, and so we adjusted to his ‘early retirement’. (Some of you with retired spouses might know that this can be its own special kind of ‘adjustment’)!
Over the first year or two, Rick continued to play golf in a Men’s League, he kept busy in the yard, skied with family, and enjoyed regular family and friend get togethers. But his world began to shrink. No longer able to work, he missed the easy camaraderie of work colleagues, the independence of driving, and physical activities that were easy have become more difficult as his disease progresses. Continued decline in his executive judgement and insight has been the most difficult, as it impacts his safety and our partnership in making both big and little life decisions. Short term memory issues create confusion, frustration, and reminders to us, to live in our present and those parts of the past where recall is good, and memories are strong. Some days we manage this better than other days.
In 2019, I heard an interview on CBC with YouQuest co-founder, Cindy McCaffery. She talked about the value of social connection, physical activity, community engagement, and wellness that she and John were seeking and couldn’t really find in any of the programs offered for Young Onset at that time. So, she had worked extremely hard to create something new. YouQuest sounded AMAZING!
I reached out via the website and Rick was placed on the wait list. Then COVID hit, and there was a pause as the world came to grips with how to keep everyone safe. In October 2020, Rick was able to start attending a service day where he was welcomed with such gracefulness and kindness. He enjoyed the days of activity and always came home completely knackered. Best sleeps ever!
Then the second? third? wave of COVID hit and our worlds turned upside down again. YouQuest team members did ‘check ins’ during this time, and the staff and volunteers scheduled individual outdoor walks to improve Rick’s core stability and strength, so that he would be ready to continue to fully participate when things opened up again. Short walks turned to longer walks, more frequently, and then to half service days, then back to full service days. The team made HUGE efforts to keep everyone safe, masks on, frequent hand washing, mindful activities, and we were grateful for their patience, understanding, and humour.
Rick and I attended a Family Barbeque that first summer and it was wonderful to meet more of the amazing staff and volunteers who make everything look effortless (we know that it is not!). I also had the opportunity to meet some of Rick’s You Quest ‘co-conspirators’, and a few Care Partners and family members, and shared a lovely afternoon in the park together. It served as another reminder that we were not alone on the journey. I even learned how to play Disc Golf – thanks John! The Christmas get together was equally enjoyable, as was the Silent Auction Fun-raiser and this year’s summer BBQ. The calibre of musicians, artists, volunteers, staff, and organizers is so high, and we feel incredibly fortunate to have found such a wonderful outlet for the social, physical, and cognitive stretching that Rick needs and benefits from. Rick’s return to a sense of physical competency has also been invaluable. And the day of respite for Riley and I is a gift that we can’t put into words.
When we have shared with family and friends, some of the You Quest activities that Rick has been able to participate in, the universal response is:
WOW – You got to go rafting on the Bow River?
WOW – I haven’t been to the Leighton Art Centre– we should do that!
WOW – That’s a great restaurant – how are the burgers?
WOW – That’s another hike we haven’t done yet – what did you see?
WOW – Live music every week?
And for the YouQuest Recreation Therapists – WOW – Rick is dancing????
After a delicious meal, engaging outdoor activity, great music, and wonderful company, the opportunities for Rick to ‘recreate’ on Tuesdays are amazing, as are the afternoon times of quiet reflection, or as we like to call it – a short nap!
We are finding that as things progress, we are going to need a bit more respite, a bit more patience, a bit more active recreation, a bit more help, and a whole lot more humour! And the days and decisions won’t get easier, for any of us. But I cannot begin to tell you all the enriching impacts that YouQuest has had on the lives of participants, care partners, families, friends, staff, and volunteers.
To Rick for his willingness to try new things (he might tell you he was ‘voluntold’), and to generous supporters, champions and donors, volunteers and staff – Thank you!
*Thank you to Laura W. for sharing her speech. More YouQuest blogs will be coming bi-monthly. Please keep up to date with us on social media: Facebook, Instagram, LinkedIn, and Twitter (now known as “X”).*