When Monica was diagnosed with ALS, I was just as devastated as she was. I felt cheated. I felt like the life we had planned together was slipping away. And then it got worse. My wife has also been diagnosed with Frontotemporal Dementia, or FTD, alongside ALS. ALS changes everything, but when you’re living in it, you don’t always notice. Others noticed, but for us, it was about getting through one day at a time.
You don’t realize how much stress you’re under until it sneaks up on you. It becomes part of your daily routine, and suddenly you're carrying a weight you didn’t even notice growing. My stress is different now. I sometimes catch myself wondering: “How long until she doesn’t remember me?”.
Caregiving affects everyone differently, just like ALS. It changes how you see things. Still, I don’t think I’d change anything, even if I had to do it all over again.
We are lucky, and grateful, for home care. Our main caregiver through AHS was so much more than just a support; they became dear friends. They have a genuine bond, and that makes a world of difference.
We know it is a downhill run, but our goal is to maintain her quality of life. The ALS Society of Alberta’s support groups became social events for us that we looked forward to. They are also a good excuse for me to bake and bring my blueberry lemon cake. There’s never any left over.
Monica is my priority. Every day, I get up early, have a couple cups of coffee, and go for a bike ride with my neighbor. That ride is something I do for me to stay well so I can be well for her. It is the one time I can step away from ALS. Every morning, my good friend always asks, “How’s Monica?” before shifting to other topics. I appreciate that so much. It might seem small, but it means a lot to talk about something else, even just for a little while.
After my morning chores at home, I head out around 12:30 to spend the rest of the day with Monica. We hang out, walk around outside weather permitting, or participate in some of the many activities going on at the facility. In the evenings, we like watching hockey together in the TV room, even if we don’t always make it past 7:00 pm.
We made the tough decision to move Monica into long-term care three months ago, but when her physical needs outpaced what I could safely manage alone, we had to make that call. She is still there today, and thankfully, her care home is close by which helps ease that transition for both of us.
Despite the many challenges, we make space for joy. We celebrated Monica’s 70th birthday at the restaurant where we got engaged many years ago. We turned it into a fundraiser for the ALS Society of Alberta, it was meaningful and beautiful.
If there’s one message I could share with other ALS caregivers, it would be this: caregiving is really hard. But it’s also an act of deep love. It's the way we show up. Every day. Even on the hard ones.