Still Iain

At first, Jane Richmond wasn’t sure what was happening as her husband Iain’s behaviour began to change. Iain would forget to make the dinner he’d planned, or to give Jane her phone messages, or how she liked her tea.

“My original thought was that Iain simply wasn’t listening to what I was saying, but I soon realized that I was beginning to see a shift in his cognitive abilities,” she says.

In September 2020, Iain was diagnosed with early stage Alzheimer’s disease. “When the diagnosis finally became official, it was something of a relief,” says Jane. She noticed her own attitude immediately flipped from one of annoyance to compassion.

“It wasn’t that he wasn’t listening, it was that he wasn’t remembering,” she says. “The clues were everywhere, and I felt as if I was living in an emotional crosswind.” The Richmonds had watched Iain’s mother suffer through the devastating effects of dementia, so they knew better than most what lay ahead.

Aware they would not be able to keep pace with the demands of their large country property as the disease progressed, one of the first things Jane and Iain did was to sell the house they had built in Mono built 46 years ago, and move to a home in an adult community next to Orangeville, where their living space was on a single level and more compact, and they were closer to the support they needed.

A Disease with no Cure

Alzheimer’s disease is the most common form of dementia, a perplexing umbrella of diseases for which there is no cure, although the pharmaceutical companies are working toward medications designed to mitigate some of the effects. According to the Alzheimer Society of Canada, more than 700,000 Canadians currently live with some form of dementia, with about 3 per cent of them under the age of 65.

Alzheimer’s is caused by a buildup of abnormal proteins in the brain and reveals itself through memory loss and other mental disabilities severe enough to interfere with daily life. Research shows that although genetics is one risk factor for developing the disease, familial Alzheimer’s accounts for less than 5 per cent of all cases.

Once you’ve been diagnosed with Alzheimer’s, you can’t leave it behind; you might be able to keep it at bay, but only for a limited time. Every person’s manifestation of the disease is unique, so a tailored approach to care is required, and that approach needs constant revision as the disease progresses.

As a caregiver for an Alzheimer’s patient, Jane, a retired VON nurse, knows that the sheer unpredictability can be overwhelming. “This is a brutal, complicated disease, and what is required of the caregiver differs day to day,” she says.

One morning, shortly after their move, for instance, Jane was happily anticipating her first cup of tea being prepared in the kitchen, as usual, by Iain.

“I heard a tremendous crash, followed by a terrifying yell,” she says. “I flew into the kitchen. Iain was standing with a bewildered expression on his face, clearly in a lot of pain and surrounded by shards of glass, scalding tea burning his torso and foot. He was in a total state of confusion, not understanding at all what had just happened.”

The glass teapot had slipped from his hands and shattered on the granite counter. The consequences could have been much more severe had Jane not been there to deal with it.

“I watch my own emotions fluctuate from deep sadness, to anger, and to gratitude for the time we’ve lived a normal life together. And I’m also aware that other things I’d like to be doing with life are now on hold,” she says.

Indeed, analysis by the Canadian Institute for Health Information concludes that unpaid caregivers of seniors with dementia are nearly twice as likely to experience symptoms of distress, anger or depression than those caring for seniors without dementia. Furthermore, a 12-year study by Johns Hopkins Medical Institutes found that spouses who care for partners with dementia are six times more likely to develop the disease themselves, perhaps because of the associated stress and inattention to their own health.

Support for Caregivers

Dini Dimakos Shevchenko is the program support lead with Caregivers in the Hills, a government funded, no-cost program established by the Hills of Headwaters Collaborative Ontario Health Team and designed to support unpaid caregivers such as Jane.

“Our memories are the bedrock of who we are,” says Dini. “When these are being siphoned away by disease, it is easy to become consumed by grief, often laden by anger, and miss life’s joyous moments.”

Dini works with caregivers on a long-term basis, assessing changing needs, providing time away from full-on care, links to necessary local resources such as personal support workers, and even snow removal contacts. She is often the first call made by caregivers who feel things are getting out of control.

Currently there are more than 200 recognized unpaid caregivers in the Dufferin/Caledon area, each with an identification badge that affords recognition of the caregivers’ role in patient care. Worn within the health care setting, it is designed to encourage mutual respect, communication and compassion in interactions with medical staff. Jane has been part of the program since its launch in December, 2020.

“Too often caregivers have been excluded from dementia patients’ consultations with medical professionals,” Dini says, “leaving them with little understanding of how the disease is progressing or what next steps are required. A caregiver’s badge is one step toward solving this problem.”

Dini also has a personal connection with the Richmonds. “Iain was the much-beloved English teacher and librarian when I attended Centre Dufferin high school in the ’90s. He also directed the school’s production of Guys and Dolls, and it was a master class for the students who worked on that production.

He still has a twinkle in his eyes, and he is always game for a good story and a hearty laugh,” she says.
While Iain, 85, is currently able to manage most of his personal needs and continues to recognize most people, his short-term memory has all but evaporated, and he needs constant reminders and coaching to get through the day without mishap. He checks in with Jane on a regular basis, asking her how he is doing. “Jane is much more aware of my condition than I am,” he says. “I just live with it … she deals with it.”

And the couple has had to come to grips with other new realities. One of them was that Iain gave up his driver’s licence immediately after the diagnosis. “That wasn’t an easy call for me, but it was a necessary step,” he says. “I was actually on my way to my appointment to take the three-hour DriveAble test when I finally admitted both to myself and out loud that everyone was better off with me not ever getting behind the wheel again.”

But even as his world contracts, Jane believes it’s important that Iain is fully included and participating in life. “He still helps out in the kitchen; it still annoys me to no end how he loads the dishwasher; we still do the crossword together. Life goes on. But he is constantly on my mind,” she says.

In an effort to stay on top of things, Jane finds herself buying two of many non-perishables while doing her grocery shopping these days, knowing it’s much easier to ask Iain to get something from their well-stocked larder than to make the grocery store run.

Still, she admits, “I’m afraid I will lose my patience with Iain – and at times I do. In rational moments, I know that is so unfair. And I’m grateful for my experience in the medical field. It allows me to advocate on Iain’s behalf when it’s needed.”

Education and Awareness

Carmelina Cicuto, executive director of the Alzheimer Society of Dufferin County, met me with a firm handshake and a list of three statistics: 66,900 Ontarians will develop dementia this year; 316,600 Ontarians will be living with dementia by the end of 2024; and 185,000 care partners will provide more than 5 million hours of unpaid care every week this year in the province.

She went on to say that about 1,500 people currently live with dementia in Dufferin County, and that number will triple by 2050. “My team and I are currently working with 500 clients in Dufferin, but it’s my best guess we are perhaps supporting only about 30 per cent of those in our area affected by dementia,” she says.

The Dufferin society has been active since 1999 and is part of a federation of 26 Ontario societies, adding more heft to government lobbying efforts. As Carmelina sees it, lack of early diagnosis opportunities coupled with woefully inadequate dementia care facilities is a looming health care crisis in our province.

“It’s becoming clearer that we are finally moving away from the societal devaluation of Alzheimer’s and other forms of dementia that has been rampant in our world. We are now able to discuss it around the dining room table. The next step is giving dementia testing the same weight that testing for various cancers is receiving. A diagnosis of dementia doesn’t mean life is over,” she says.

Along with political advocacy, a key mandate of the local Alzheimer Society is community education. Carmelina and her team regularly take on speaking engagements in local high schools, and even elementary schools, emphasizing brain health awareness.

More broadly, the society promotes dementia-friendly communities. This includes such initiatives as year-long partnerships with local governments, police and public-facing businesses to help them adapt their physical environment and communications skills to interact respectfully with people with dementia.

There is a testy edge to Jane’s voice when she says, “Iain is still Iain. He hasn’t become his disease. I get annoyed when I hear reference to ‘the guy with Alzheimer’s.’ It undermines his dignity.”

Carmelina and her team also offer caregiver support groups, a young onset group, a “persons living with” group, initial resource counselling, and behavioural support workers, along with the essential fundraising group. Carmelina has been at her job for two years now, coming on board immediately post-Covid, a time when all not-for-profit organizations suffered from drastically reduced volunteer hours during lockdowns.

“Happily, we are seeing an increase in interest in volunteer jobs, albeit a slow one,” she says. Volunteers are required for administrative support, at fundraising events such as the annual Walk for Alzheimer’s in May, and for friendly visits and phone chats. The society also relies heavily on student placement volunteers.

Early diagnosis and education are also key pillars in the medical practice of Dr. Kiddy Klair, an internist and geriatrician at Headwaters Health Care Centre. Over a coffee with me, she elaborates: “My advice is to get tested. Your mid-60s is a good time, but earlier than that is even better. This gives us a baseline to work from, and an idea where you might be headed.”

She also recommends taking time to become educated on the rapidly evolving field of brain health, and notes, for example, a recent study in the New England Journal of Medicine which explores nutrition and brain health. “Taking a look at well-respected websites can yield valuable insight,” she says. “And exercise. This keeps coming up in study after study as a preventive strategy for avoiding not only dementia but many other age-related problems.”

Her long-term vision is to establish a geriatric day hospital, where older adults and their caregivers would receive greater levels of care, education and engagement, with medical attention from a wide range of health care professionals and an onsite geriatrician. “But at the moment, this is just a dream,” she says.

Personality Changes

Jane is aware that Iain’s presentation of the disease is on a spectrum. “I consider myself fortunate that there isn’t an ounce of ill will in Iain. He is still the easygoing, gentle soul he always was, but it’s a constant, moment-by-moment effort to have him remain present,” she says. “For example, he quickly forgot the lovely dinner at Mrs. Mitchell’s restaurant the family enjoyed recently.”

For others, along with memory loss, the personality changes in their loved ones are more acute.
In the spring 2024 issue of this magazine, longtime “Headwaters Nest” columnist Bethany Lee outlined her family’s journey with her mother Carol’s Alzheimer’s disease. Bethany and her husband, Derrick, kindly agreed to spend some time with me to expand the story.

“Because I was very young at the time, I only had an inkling of what my grandmother Urla’s Alzheimer’s journey encompassed. My parents tried to shield me from it,” says Bethany. “But with my own mother, Derrick and I knew from the beginning we had a major role to play.”

Carol and Jim Lee, Bethany’s mom and dad, lived happily on an acreage in Everett, with horses and dogs to keep them busy, and active social lives both here and in their Florida wintering spot. “Mom had always organized family birthdays and Christmas celebrations, but it slowly became apparent that these tasks were quietly being taken over by Dad,” says Bethany.

Tragedy struck the family in 2016 when Bethany’s brother died suddenly, and shortly after that Covid shut down the world. These two events exacerbated the isolation that was creeping into Carol and Jim’s life.

According to Derrick, “Bethany and I had been encouraging them to move from the country property into a condo in Orangeville, but it took a while for them to capitulate.”

It wasn’t until 2022, when Carol was diagnosed with advanced dementia, that the move into Orangeville finally happened, and by that time Jim was a full-time caregiver, with a wife whose personality, unlike Iain’s, was undergoing an alarming transition. She was frightened of being alone, of trees, of weather, even her beloved dog. Jim continued to say, “I’m okay,” but then he suffered a heart episode and was hospitalized.

Bethany moved in to take care of her mom, and realized how impossible things had become. The situation was untenable and unsustainable, and Bethany and Derrick made the decision that Jim had been reluctant to make. Carol needed to be in full-time care.

She was added to the crisis list for long-term care in Dufferin. Six weeks later she was admitted to the Dufferin Oaks residence in Shelburne, settling in on the second floor, the secured area devoted to memory care patients.

“We feel hugely fortunate that mom is living in Dufferin Oaks,” says Bethany. “It’s clean, with wonderful and caring staff, great food, and it is government funded. “Derrick and I were in agreement all the way along about this. I know families that squabble and bicker about the next move, but we could see that bearing the entire weight of caregiving had placed Dad in a very dark place,” she says.

“This is a hideous disease,” adds Derrick. “There are trip wires everywhere. One person is drowning, and three or four are being pulled under. But you can’t correct it out of them. That’s the reality.”
Bethany has learned to communicate more precisely with her mom. When she visits, Bethany starts each conversation with, “Hi Mom, it’s me, Bethany, your daughter.”

Jane Richmond can empathize. “Sometimes I feel that there has been a death in the family, but nobody has died. I am constantly forcing myself to live with the reality of watching Iain’s world shrink. Keeping to a pre-arranged schedule helps the days to flow, but things aren’t always beautiful,” she says.

However, even as she acknowledges that “everything has been set aside in favour of this horrible disease that is coming relentlessly at us,” Jane feels confident for now in her ability to rise to the occasion. That confidence comes in part from her determined focus on the blessings that offset the challenges: “When I’m safe in my bed at night, with Iain breathing softly beside me, I feel hugely fortunate that we are living where we are, with family and community support around us.”