November 21, 2011: Our lives have been turned upside down and inside out.
Mom’s by Alzheimer’s disease, mine by the decision to abandon my business and home, and return to Canada to care for her. It’s late November 2011; I’ve been back for three weeks. My bags are finally unpacked. Mom lives in rural Quebec eight miles from the nearest town. I left my friends and community on the other side of the world to be with her; I have no safety net. I also have virtually no support from my brother who was in business with Mom for years and lives a few miles down the road. In fact, he and I are on the cusp of war over Mom’s care.
When I arrived at the end of October I discovered wheels in motion to have her placed in a facility, something she explicitly said she did not want. My return threw a wrench in the placement works and deepened the divide between myself and my only other sibling. It’s not pretty. Besides the family conflict, there are other challenges. I am ill prepared and poorly equipped for the caregiving task at hand. I have no training, and no natural caregiving skills to speak of. Being childless by choice is both a handicap and a blessing. It means I don’t have any parenting experience to draw on. It also means I’m unencumbered by a family of my own and thus free to devote myself to Mom’s care.
My understanding of Alzheimer’s disease is limited, so is my access to resources. I’ve read a handful of books (Dancing with Rose: Finding Life in Alzheimers, The 36-Hour Day, The Majesty of Your Loving; A Couple’s Journey Through Alzheimer’s, and Still Alice), and done some online research, but I’ve barely scratched the surface. I have a lot to learn. I am like hundreds of thousands of people worldwide who find themselves thrown into the caregiving deep end without swimming lessons or water wings. I lack most of what it takes to stay afloat; there’s a substantial risk I’ll drown. But it’s not all doom and gloom. I have a clear goal, lots of courage and unmatched determination. I want to do whatever I can to alleviate Mom’s suffering and make her life as joyful as possible for as long as possible.
Fortunately, Mom has the financial resources she needs to have the care she deserves; many others do not. More important than money perhaps are perseverance and strength, we have good measures of both. I also have an untapped wellspring of patience and compassion of which I am becoming increasingly aware and for which I’m eternally grateful. Stress and anxiety top the heap of our daily struggles, but Mom and I have begun to settle into a routine, or as much of a one as we can under the circumstances.
The best bit is I’m surprised to find inherent joy in performing simple acts of service. This is a huge gift. The prognosis? I think we can make it. If not, we’ll die trying.