Few of us choose the role of caregiver. Rather, many of us are drafted into it unwillingly; some of us are dragged kicking and screaming.
When I left Dubai in the autumn of 2011, and came back to Canada to care for my then 83-year-old mother, I knew nothing about dementia of the Alzheimer’s type, and even less about caring for someone who was living with it. Mom’s big red brick house on the hill in rural southeastern Québec was nine miles from the nearest town, and a far cry from the international juggernaut of a Middle Eastern city in which I lived for eighteen years. It took only two months for me to become completely exhausted, drained of every physical and emotional resource I thought I had. I was ready, as my mom would’ve said “for the cleaners.”
But somehow I managed to survive, and even more amazingly to eventually find moments of joy on the caregiving rollercoaster. I cared for Mom in her own home for a year with the help and support of one other amazing care partner, a young woman named Caroline. We became a close-knit family of three, each on her own journey, and each also somehow connected to the other two at a deep level. During that year we shared a multitude of joys and sorrows, and I learned more about caregiving than I had ever wanted to know.
Here are three key concepts that are “hooks” to some of my most important lessons:
Once I’d made the decision to come back and be a caregiver, I also decided there was no point looking back and missing the lifestyle I had loved, the business I had abandoned, the friends I would never see again, the trips I wouldn’t take, the money I wouldn’t make, the opportunities I would forgo, the fun I would never have, and so much more. I chose to make the most of where I was, difficult as it was, and I created the best hand I could with the cards I’d been dealt. There was power in that.
I’m a naturally curious person, and I love to learn. Spending so much time alone with Mom forced me to look at our relationship in new ways. While we had always been good “friends,” it had not always been easy. All of a sudden we were together in close quarters: two fiercely independent women each of whom had run her own business for several decades, each with a mind of her own, each accustomed to doing what she wanted when she wanted and not having to accommodate anyone but herself. We were very much her own people. Plus, one of us had a brain disease about which we both new little. It was a miracle we didn’t kill each other. But we didn’t. We found ways to get out of conflict and onto safer ground. A whole lot of healing ensued.
3) Rock ‘n Roll
They say life is a roller coaster. If it is, being a caregiver has to be the world’s biggest and baddest. That’s a bit of a shock for someone like me, whose idea of adventure is the merry-go-round, or the Ferris wheel. But what I found was that feeling my feelings, whatever they happened to be (the lowest lows or sometimes the highest highs) was therapeutic if a little intense at times. I don’t know what it must be like for care partners who deal with other kinds of diseases, but with Alzheimer’s I experienced raw emotions that would turn my world upside down, as well as joys that would make my heart sing. They were all part of the journey, and now that it’s over, I’m thankful for riding (and writing) the ride like I did.
My mom died on August 17, 2016. I miss her. But I’m glad she’s dancing free of the confines of the broken body and mind she left behind. I’m grateful for the ten last years I had with her, and for the lessons I learned and that I’m still learning as a result of our journey. My hope is that others might be blessed with a fraction of the grace I have found.