Dementia no longer a shameful secret
Let’s talk about it
by Bonnie Sandler, S.W.
Chatting with a friend over lunch, the conversation turned to the popular TV show Grey’s Anatomy. I remarked on the previous night’s episode, where the focus was on Meredith’s mother, who has Alzheimer’s Disease. The details are not as important as what shows like these bring to the world of dementia. It wasn’t that long ago that people didn’t feel comfortable speaking about dementia in their family, and treated this disease as a shameful secret.
With the growing number of people being diagnosed with AD/RD (Alzheimer’s Disease and related disorders), and an aging baby-boomer population struggling with their elderly parents or concerned about themselves, we are becoming more willing to acknowledge AD/RD. There are now more services for individuals with dementia, along with information and support for their families. We are on the right track, but we’re not quite there yet.
I am not passionate about politics, but if you ask me which U.S. President I would raise my hat to, I would say the late Ronald Reagan. In November, 1994, President Reagan courageously stood before the world and read a passionate letter about his having been diagnosed with Alzheimer’s. It was a great step toward removing the shame linked to dementia. It reminded us that this neurological disease knows no boundaries; it can affect anyone. The entertainment world has produced major films about Alzheimer’s, such as The Notebook. My two favourite shows have characters with Alzheimer’s Disease, Grey’s Anatomy and Boston Legal, where William Shatner plays a prominent lawyer in the early stages of Alzheimer’s who, nevertheless, remains involved in his law firm.
It is difficult to find a family that does not have a connection to dementia, and that includes my own. My late grandfather, Zaydeh Max, had some form of dementia (at that time the words senility or hardening of the arteries were used). Zaydeh was in his early 50s when he was diagnosed, and had to be cared for by my grandmother until his care was beyond her ability. My grandparents lived with us at the time. Even though I was a child, I still have memories of my mother taking my Bubby Rochel to The Hospital of Hope (now The Jewish Eldercare) then located in the East End. I recall two other events: Zaydeh wandered off during a family trip to New York City and was miraculously found by the NYPD. I remember the tears of my mother and grandmother, who, understandably, thought the worst. I don’t remember Zaydeh continually wandering out of our house while my grandmother slept. He walked the long distance from our home in Ville-St-Laurent to downtown Montreal. My own father drove through the night looking for him, sometimes finding him. Other times, Zaydeh was found by the police. Although his clothes were properly labeled, we were not as organized then as we are today, with a wandering registry established by the Alzheimer’s Society.
My second memory is of my only visit to the nursing home. Zaydeh Max didn’t know who I was and I didn’t know who he was. I do remember looking around, a bit fearful, seeing other patients who, to my child’s eyes, just didn’t look or act right.
Zaydeh died in 1965 at 73. He outlived his wife, who had cared for him even during his years in a nursing home. Bubby Rochel was killed by a car at the corner of our street as she was going out to buy a gift for one of Zaydeh’s caregivers.
Fortunately, times are changing. We are learning about dementia from a generation that is more open about life’s challenges. There are books on this subject, such as What is Happening to Grandpa by Maria Shriver, that are specifically geared to children of Alzheimer’s sufferers.
I salute everyone who plays or has played a role in demystifying dementia. Alzheimer’s is a disease, not a disgrace.
Bonnie Sandler is a private social worker, specializing in professional services for seniors. If you have questions or comments send them to b.sandler@sympatico.ca
