Photo of author's mother Betty Wilson, aged 53
During snowy winters, the drive from our Ottawa home to visit my parents in Beaconsfield, Quebec could be treacherous. So, in 1980 we postponed the trek until late March. Mum, aged 74, came to the side door of their house to greet me and I will never forget the shocking change in her eyes’ appearance. Her gaze was noticeably vacant, and her pupils seemed smaller than usual. Always a slender woman, she’d lost weight, too.
Since the previous November, when she had contracted a case of shingles, her conversation over the phone had been increasingly vague and imprecise. She’d ask, “How are the boys?” as though she
wasn’t quite sure of my children's names.
Major Personality Change
In person the change was even more unsettling. As the 34-year-old mother of two, aged six and nine, I was preoccupied with managing our hectic lives in Ottawa. I was completing a master’s in education and we were preparing to sell our house. My husband had accepted a job in London, England and we were moving overseas two months later, in mid-May. Just differentiating what to take with us and what to put into storage for three years was a humungous task.
I had no idea how to relate to my disappearing mother who lived about 200 km away from me.
Hale and hearty 79-year-old Dad insisted that she was “just a little forgetful.” Because I believed her mental confusion was caused by the shingles’ pain, I wasn’t concerned that her condition was irreversible. She’ll soon return to normal, I thought. Once the pain stops.
It only got worse.
I’d never seen cognitive decline up close and was unable to convince Dad to hire help. His stubborn denial that she needed outside care made everything worse. A 1986 fall on an icy sidewalk caused the broken kneecap that eventually put her in hospital.
Although Dad had arranged 24-hour-nursing care once she came home, her mental deterioration was so severe that she had to be moved to long term care. I was not involved in the transition because our family was living in England for a second spell. During a phone call on Easter Day, I was relieved to hear that she’d finally receive the specialized care she needed. I wept profusely.
After living for six years in two different facilities, she died at 86. An autopsy revealed that she had suffered from Alzheimer’s Disease (AD). Today doctors use several tests like Positron Emission Tomography (PET) and Magnetic Resonance Imaging (MRI) to diagnose AD, and other forms of dementia, while patients are still alive.
Watching my beautiful, talented, loving mother deteriorate over 12 long years was absolute hell. When reliving my helplessness, I picture Mum sitting in a canoe without a paddle – drifting
away from me toward a river’s rapids.
Contemporaries Being Afflicted
Fast forward 31 years after her death. Today my husband and I have four contemporaries who are drifting away from our long-term friendships – due to dementia. Some have mild cognitive impairment; others have announced their own AD diagnosis to me.
Because media reports state that AD numbers will grow with each passing year, I want to capture ways to interact with loved ones who are still physically healthy but suffering serious mental disorder. It would be easy to just ignore them, but both the patient and their families deserve our making the effort to reach out.
Having been blessed with a healthy intellect, the permanent feeling of disorientation sufferers must experience terrifies me. Difficulty retrieving a straightforward memory must be sheer torment, so I empathize with anyone in cognitive decline. (I get panicky enough when I can’t recall the name of an approaching former acquaintance who’s smiling at me!)
All our affected friends have lost the ability to correspond by email and talk on the telephone. The act of removing their contact information from our computers is both depressing and final.
Rather than simply give up and abandon these people, I endeavour to meet each person exactly where they are today. This takes forethought, an opportunity to meet in person, and being present. When sensitive adults chat with a familiar child, they use vocabulary appropriate to the little one’s stage of development. A similar shift in communication style is helpful when dealing with any type of dementia. I’m not advocating “talking down” to anybody; just select your themes carefully.
It takes courage to just let go of old topics and shared experiences, but doing so is like applying a soothing cream to rough skin. Everything feels better.
In Part 2 of this essay, I will share principles that so far have worked well when we're with contemporaries.