Our Family’s Journey with Young Onset Dementia… So Far. And How You Can Help!

The guy in the picture, that’s my dad – Charlie Wilkie (Or Chucky. Or Grampie).  This isn’t something I talk about a ton, but it’s something that people probably should talk about more often.

My dad is a legend.  He’s an absolute gem of a human.  He tells jokes like nobody else and he will ski until his legs fall off.  He’s a kid at heart, through and through.  Or he was.

We started to notice changes in him years ago.  Trouble focusing on tasks.  Trouble remembering routines (like the order of operations to get on the chairlift), forgetting exit doors to places he’s been in hundreds of times (like my basement).  He struggles to deal with the mayhem of my 4 & 6 year old.  In short, its been tough.  We finally sought out help, and it was a long and frustrating process, but he was diagnosed with Young Onset Dementia (specifically early onset Alzheimers).

That process is one that I wouldn’t wish on anybody.  There is uncertainty and not knowing (dementia is largely a diagnosis done by eliminating all other causes – there is no “test” for Alzheimers specifically).  But at least we knew.  But then the second piece of that journey begins – where do you go from there?

That part is tough.  The Alberta Health system’s dementia resources are very tailored to those in the “elderly” category.  And for those that fall under the umbrella of Young Onset, it’s tough to know what to do.  Where can he go where people understand what he is going through?  What can my mom do while she is battling her own health issues for some respite?  How do you move forward and plan for the future?

And that’s where YouQuest Calgary comes in and why I’m now a part of their Board of Directors.  The wonderful people at YouQuest apply the therapeutic recreation model to address social, physical, cognitive, emotional, and spiritual needs in a welcoming community setting.  The program welcomes members for one or two activity packed days per week where they foster: Autonomy, Independence, Confidence, Camaraderie, Freedom and Connections.

Beyond the value for participants, their care partners (like my mom) receive a full day of respite to get things done that need to get done (like focusing on her health and needs as well).

It’s an incredible program, and more than anything, it is something that my dad looks forward to every single week (sometimes several times a week, because he gets the days mixed up occasionally ????)

So what can you do to help:

1. You can talk about mental health and cognitive challenges.  I think we waited far too long because we thought: there’s no way it can be dementia, he’s too young.  Well it can be.  Voice your concerns.  Talk openly.  Check in on your parents, friends or partners.
2. You can learn about YouQuest and Young Onset Dementia. YouQuest is the first active wellness community for people with young-onset dementia. You can follow YouQuest on social media and check out more on the website.
3. You can support YouQuest financially.  YouQuest is charity that does not get funded through AHS, but relies on grants and the generous support of donors like you.  If you are able to give, please consider doing so here.
4. You can support YouQuest with your time.  YouQuest is supported by a fantastic group of volunteers that dedicate time to helping the program to run smoothly.  If you’d like to be one of those wonderful people, you can find more here.

This is a long read, but I hope that someone finds it helpful.  It has been helpful for me to write it.  At the end of the day, Chucky is still a legend.  But now he’s a different kind of legend.  Living his best life and getting the most out of it.  Thanks to YouQuest for helping him to do that.