The Joy of Caregiving
Regardless of one’s reason for becoming a caregiver, the responsibility entails a significant commitment that can be intense and time consuming. Meeting care demands often necessitates life adjustments and may affect the time a caregiver can spend with family and friends, paid employment and household responsibilities.
Within hours of my mother’s stroke, I became the “older daughter,” making decisions, evaluating rehabilitation choices and rushing between hospital and long-term care facilities despite my hopeless inexperience. As I look back, that was the simple part. Daily life après stroke was the challenge. Like it or not, over the next few months, my mother’s quality of life and medical care became primarily my responsibility. Mum’s life changed, and so, unfortunately, had mine and my family’s.
The family stretch
Caring was not something I could opt out of. It wasn’t a matter of choice. Through it all, my family had to compromise, stretch and flex. Things at home had to become more agile than ever before. Mum’s needs and daily triumphs were often not at all what we’d imagined, and the financial impact and time away from work were significant.
Our next 11 years consisted of stroke rehab treatments and equipment issues, crisis planning and the final eye-opening realization that mum would never speak, walk or use her entire right side again. Her house and car became expensive albatrosses, the hospital and Tim Horton’s our second home. Adult diapers, nursing routines, the comfort of wheelchair seating cushions and “pressure relief” became dinner table talk. Selecting a nursing home and dealing with administration, care issues and mum’s ongoing struggles became part of my every day life.
Live and learn
Today, I became veteran coper. It was always a squeeze of time and effort. I made the two-hour return trip to mum’s home town more times than I’m willing to keep track of –rain, snow or shine. Summer evenings on the nursing home lawn and awkward trips to the toilet became routine. I even learned to manage “the drill” from afar, not worry about my loss income & extra expenses. I can even chuckle a bit at a few of the funny incidents along the way, and let go of the turmoil of daily care. I gradually lost the guilt of not being there.
When I was there, Mum and I had a special routine. We laughed. We tried to communicate without words. We sung. I visited as often as I could and called her whenever possible (usually at dinner time!). We’d go out when I felt strong enough to push and lift. This wasn’t the life either of us planned. But that’s how it was and we made it work.
We’re in this together
Now mum is gone, the lessons I’ve learned along the way from others give me strength to help others and share advice. We family caregivers like us, are a unique and growing bunch. Somedays it feels like at certain times in our lives we belong to a special club, where the membership criteria is an aging parent. Glancing knowingly at each other beside walkers and wheelchairs like we used to behind strollers. We share stories, hats, mitts and coats, we worry about a parent who is at risk and encourage each other.
I dedicate this book to caregivers everywhere with these few tips. Make your health a priority so you can stay the course. Be strong enough to plan and research well. Shed the adult-child attitude, be ready to take advice, and ask for help and say no when it’s too much. Forget the sense of obligation and lose the guilt. This is a labor of love, to be done only by those who are agile enough to follow an unknown path.
Find pleasure and joy in small things while you can. Look for energy in an occasional smile and signs of gratitude. Keep your chin up and take pride in preparing for and doing the best damn job you can.
Caroline, Executive Director
Canadian Abilities Foundation