My father-in-law was a good-natured, outgoing man with a sunny disposition and gifted with a lively sense of humour.
One of the many games he used to play with his daughter Jan and grandchildren was the four-liner, which began with holding Jan’s hand and her father asking, “Do you love me?”
Jan was expected to respond, “Yes I do”, after which Bob, would ask, How much? to which Jan would respond with a crushing grip, or for fun, a weak grip or none at all, at which point both would laugh – to be followed by another round, this time with a more satisfying grip.
Last September marked four years for Jan in long-term care. Before that there were two years in day care and before that several years of cognitive decline marked by progressive forgetfulness of the storylines of books she was reading, appointments and names, more errors creeping into her weaving, some of which she couldn’t solve.
And for an outgoing, sunny person very much in her father’s mould, there was a slow withdrawal from social events and longtime friends.
For the initial few months in long-term care, as I left following a visit, she would say she wanted to come home. That was tough for both of us, although she was usually distracted by a staff member and I was promptly forgotten until, eventually, with repeated periods of isolation in 2020, Jan no longer asked.
These days, Jan and most of the others suffering from dementia, spend much of their time watching old sitcoms on TV, church services or playing games, most of which the residents pay little attention to unless personally prompted by name by a staff member.
To me the most striking and telling feature is that residents fail to form meaningful social relationships with other residents, despite living and eating with them for months on end. With this isolation comes a withering of language skills, mostly due to lack of practice, although some dementias are associated with specific language problems.
Some residents light up with visits from regular close family members. That’s true of Jan, too.
If she spots me coming, her face lights up. She regularly enjoys marching page-by-page through pictures of wild animals by Robert Bateman or listening to long-ago family stories and viewing video clips of our daughter Martha’s cats in Anchorage, Alaska.
That’s where her father’s, “Do you love me” ditty comes in.
Jan remembers the lines and if I start the game, she likes to tease with a no grip responses to “How much?” – all the while, grinning.
This game and others I make up or stories I tell, seldom fail to bring out her sense of humour and enjoyment. Those responses remind me that Jan’s capacity to love and need for affection is very much alive and well, despite long hours when, like other long-timers, she watches sitcoms or simply nods off.
What Jan and other residents need is warmth and social connection for which they depend on the staff, some of whom make a point of connecting with them in personal ways, such as the odd hug, which can make a big difference.
Unfortunately, these days, those moments have become fewer because long-term care facilities are short-staffed much of the time and sometimes last-minute no-shows make those shortages worse, leaving even less time for the staff to spend with the residents above and beyond meeting their physical needs.
There’s another matter. Most residents in long-term care come from cultures and times when the social mores of greetings and small talk were well understood and practised within a community and continued when most of the staff shared similar cultural backgrounds, making communication between staff and residents much easier.
With migration from so many diverse cultures to Canada has come an awkwardness and unease between cultures that is hard to bridge, especially for the elderly. I witnessed that when we lived in Boston in the 1990s when there was a large-scale immigration from the former Soviet Union.
The older generation stuck to the community and language with which they were familiar, while the children and young adults soon fit in but retained their connections with their grandparents.
There’s a similar cultural gap in many areas of Canadian life these days and it would be surprising if there were not similar challenges in long-term care.
The result can be unintended social and communication gaps between staff and residents, even though the treatment of the residents is exemplary in other ways.
However, the impact of cultural differences between staff and residents in long-term care facilities where so many suffer from cognitive isolation has the potential to worsen the isolation and boredom for the residents.
Finally, Jan illustrates what is probably true for most residents: they respond to affection and warmth more than might be apparent through much of their waking hours. It takes special people in long-term care to make that happen and thank goodness, many do.
Now back to Jan and “Do you love me? …”
Dr. William Brown is a professor of neurology at McMaster University and co-founder of the InfoHealth series at the Niagara-on-the-Lake Public Library.