My experience began when I became a patient in the middle of living a completely comfortable life and I was the one receiving the care. The change was sudden and traumatic and I was too independent to handle receiving care well. As I struggled to regain lost independence, I became a caregiver – not once, but three times, in quick, overlapping succession. My husband was diagnosed with Alzheimer’s Disease. My mother, already suffering from congenital heart failure, developed terminal cancer. My frail father could not care for himself after her death. Like most people, I had a difficult time hanging on to anything resembling my former, comfortable life. I saw the sacrifices made by family and friends as they comforted and cared for me in stroke recovery. I experienced the frustration, anger and helplessness of dealing with dementia. I lived the sadness and tenderness of singing to my mother as she closed her eyes for the last time. I felt the fear of my father, facing life weak and alone after 65 years of marriage and I experienced the trauma of a motor vehicle accident that ended his life, beside me, hanging upside down on a northern highway. Back in a wheelchair after the accident, I did not handle dependency more graciously the second time.
I have had the unique experience of viewing care giving from both sides – as a patient and as a caregiver; both roles embody physical and emotional struggles - both require support. Care giving and care receiving are not just about caring for; they are also about caring about. They are about making tough decisions that are in someone else’s best interests; they are about making promises to support people, not situations. I have come to realize that care giving is a very special relationship – that the value of both lives must be paramount. The giving of care cannot dominate or devalue the receiver and the receiving of care cannot diminish, devalue or deplete the giver. To be healthy, this care giving relationship must be built on trust and supported by the larger health care community. It can be strong only when it is recognized and valued and it can flourish only in an environment rich with practical assistance, common sense, humour, forgiveness and love. Care giving is not just about caring for someone, taking care of their needs; care giving is caring about someone. And caregivers need help. To be strong, one must be supported. To make difficult decisions, one must be trusted. To make realistic judgements, one must have realistic options. To care for themselves, caregivers must have reassurances that their loved ones are also receiving the best care possible.