Looking back, it seems like forever.

First, Jan forgot the odd appointment or lost the odd financial statement preparing the 2008 income tax material for our accountant — all easy enough to write off.

But one day, Jan became lost driving home from her daughter’s home in Fonthill and bit by bit, cut back on how far or where she would drive for appointments unless accompanied by me or a friend — and soon, there were other cues. 

Jan was an excellent weaver, good enough to take on commissions, but began to make mistakes that were frustratingly difficult to recognize and figure out how to fix.

With reading, Jan found it increasingly difficult to keep track of who was who in novels and the plot and took to keeping a running tally of the characters in books she was reading before she would finally give up on this or that book, saying something like, “I just couldn’t get into that book” or other version of her growing frustration with what had been one of her favorite pasttimes.

With that and other frustrations, such as losing her way within Niagara-on-the-Lake or constantly losing house or car keys, Jan became increasingly anxious and developed frequent visual phenomena typical of migraine — a sure indication of stress.

Like her father, Jan was a social person who enjoyed people, but as time went by, she became quieter, less comfortable visiting with others — except those with whom she was most familiar — and her world outside our home gradually shrunk to the Pillar and Post’s morning aquafit classes, choir practices and church services at St. Marks. 

Some of those moments were frightening, such as the time when she became bewildered and lost trying to find her way home from the Prince of Wales, or the mysterious man she reported in the parking lot at the Pillar and Post who claimed he was an insurance agent, to whom she gave what was left in her purse.

Those and other unnerving moments were the ones Jan told us about, but as my daughter Martha reminded me, there were probably many other unwitnessed, scary moments for Jan she didn’t tell us about or remember. 

About this time, we hired a young woman, who was good-natured and kind, to help Jan out for several hours a day while I was away before switching Jan to Upper Canada’s day program for two years. 

During the latter period, Jan developed the “slumps,” for want of a better term, in which for example at the Stagecoach Restaurant, Jan would slump to one side unresponsive for a few minutes before coming to, as if nothing had happened.

These became increasingly common, especially in stressful situations or even at home, when sometimes she would slump to the floor and recover in a few minutes. 

Jan was thoroughly investigated at the Niagara Falls hospital, but no obvious treatable cause was found for the “slumps” and because of the falls and now severe memory and cognitive declines, Jan was admitted to Niagara Long Term Care Residence in 2019 — half a year before COVID-19 struck with a vengeance in late 2019 and early 2020, before vaccines were available.

Like several other residents, Jan caught COVID and for several weeks was very disoriented and when once they switched her to another room for isolation purposes, she kept wandering back to her former room, bed and bathroom. 

For the next several years, including the switch to Pleasant Manor, Jan was reasonably stable with little evidence of further cognitive decline but like many of the residents at both institutions, Jan failed to develop friendships or even talk with other residents despite seeing one another everyday and close up at mealtimes.

No surprise, her natural language skills withered away except for short sentences or phrases prompted by a staff member or me.

Now, toward the end of her second year in Pleasant Manor and the 16th year of her dementia, Jan is failing again.

Left alone, she’s apt to dose off and pay little attention to what’s going on, has developed abnormal flicking and tremulous movements and there have been periods lasting several hours when she’s hard to rouse and, most recently, seems to be losing the sense of how to swallow and coughs a lot.

The latter two suggest that swallowing is beginning to fail and as a result, she aspirates, something that carries a high risk of pneumonia and one of nature’s common exit ramps at this stage of the disease. 

Looking back, Jan’s history is typical of Alzheimer’s disease, although she also has MRI evidence of two old small ischemic strokes – a common enough combination.

The periods of unresponsiveness are probably epileptic in origin and related to the cumulative effects of the disease on her brain, but impossible to treat without making her even drowsier and less responsive. 

Even so, I love to visit Jan and that part that I love is still there.

On good days, Jan knows precisely who I am and responds to cuddling and holding hands and most of my bad jokes, sometimes with her own comeback comments poking fun at me.

So, in some of the most important ways, I haven’t lost Jan and more important, the warm, social Jan is still there. 

The title of this essay speaks to the long road travelled by Jan and I and similar roads traveled by other residents and their partners and best friends.

Alzheimer’s is a long-haul disease — what Martha calls a “brutal living disease.”

There is reasonable hope that more effective anti-amyloid and tau drugs given early enough — ideally, well before any clinical symptoms — could prevent the progression of the disease. 

The importance of clearing the brain of as much tau and beta-amyloid is underlined because of recent speculation that both can act like prions – that is these abnormally shaped proteins are capable of inducing the same changes in normal versions of these protein as Nobel laureate Venki Ramakrishnan speculates in his 2024 book, “Why We Die.”

Recent evidence also suggests that the Shingrix vaccine, which significantly reduces the risk of shingles, may also reduce the risk of Alzheimer’s — possibly because it reduces the load of the chickenpox virus, which, like other viruses, long stays in the body, and might play a role in triggering Alzheimer’s.

However, we’re not there yet, because many of the current drugs are associated with bleeding in the brain — an unacceptable risk for someone being treated, who has been identified by biological markers in the brain, CSF and blood as having AD but otherwise is well. 

Hear about Alzheimer’s and aging in general at the upcoming series at the Niagara-on-the-Lake Library, beginning Sept. 4 at 2 p.m. Please register with Debbie Krause.

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.