A family’s raw reality

·11 min read

John Cook’s wife moved into long-term care in January. Over the months that followed, he dealt with a rush of changes — living apart from his wife of more than 50 years and the ever-changing visitor policies during the COVID-19 pandemic.

But he says if there’s been one constant, it’s guilt.

For eight years, the 73-year-old retired Spectator copy editor was picking up more and more of the housework: cooking, groceries and laundry, as his wife developed dementia.

She became increasingly forgetful, started seeing things that weren’t there and began waking up in the middle of the night and wandering around.

But John said it still pains him every time he ends a visit to the long-term-care facility where she now resides.

“You feel like you’re abandoning her,” said John.

Family members, specifically children and spouses, are the most frequent caregivers for seniors with dementia. Caregivers provide an average of 26 hours of care each week to seniors with dementia, compared to 17 hours per week provided by caregivers for seniors without dementia, according to data from the Home Care Reporting System 2015–2016.

As the number of Canadians living with dementia grows, more and more people will rely on the support of caregivers. But with limited supports and long wait times for long-term care, these caregivers face a difficult physical and emotional toll as they struggle to support loved ones with dementia.

A gradual onset

Sylvia Cook was approaching retirement at the bank she worked at in 2012 when John and their daughter, Sam Cook, started to notice changes.

At first, she showed little signs, like having difficulty remembering things. She also started showing more urgency to do things.

“She had to do things now, get out now, see the grandkids now. That was very important to her,” said Sam, who’s a professor and the program co-ordinator of the radio broadcasting program at Mohawk College.

John added that Sylvia would also say she wanted to go out and “meet people,” even in the middle of winter, but when she was asked who she was meeting and where, she wouldn’t know.

“I used to drive (her) around and then come back to the house,” he said.

Sylvia also stopped cooking.

“It was hard for her brain to put a meal together,” said Sam, calling it “an extremely frustrating time.”

“Dad was like, ‘I don’t understand what’s going on.’ (Sylvia) didn’t know what was going on. I didn’t know what was going on, so it’s very traumatic at the very beginning stages,” she said.

About a year later, in 2013, Sylvia retired at the age of 65.

They took Sylvia to a geriatrician and after testing, she was diagnosed with dementia in 2015.

‘A prison without bars’

As Sylvia’s condition progressed, John took up most of the cooking, laundry, groceries and other chores. At the same time, he was taking care of Sylvia.

“I couldn’t leave the house because I couldn’t leave her by herself. Wherever I went, she had to come with me,” said John, noting that even when grocery shopping, Sylvia would wander off if he left her alone even briefly.

It became harder and harder for John to take care of Sylvia and do all the chores.

To help get some relief, in 2017 John and Sam sought help from what is now called the Local Health Integration Network, or LHIN, government agencies that co-ordinate and fund health services, including long-term care, at the local level.

They assessed Sylvia and told the family about adult day programs where, for a fee, Sylvia could participate in group activities such as playing games, gardening and crafts for seven hours a day.

At first, Sylvia started attending the program one day per week. On another day, a personal support worker (PSW) would visit to help care for her.

Sam started a journal to keep track of her mother’s progress, her appointments and notes from the members of her care team.

“It’s so utterly important to have some sort of information book about your parents as a caregiver … because there’s so much information being thrown at you,” said Sam. “When you have this book to refer to, it is probably the most important tool you can have.”

Eventually, Sylvia started attending the day program more often and having more visits from PSWs. By April 2019, Sylvia was receiving help seven days a week, but it still wasn’t enough.

When Sylvia was at the day program, John would do the chores. By the time she came home, John wouldn’t have had any rest, Sam said. “Then they go to bed, and then she’s up in the middle of the night.”

“I used to say it was like a prison without bars, because you couldn’t really do anything or go anywhere,” said John.

Caregiver support is a big concern for Mary Burnett, CEO of the Alzheimer Society of Brant, Haldimand Norfolk, Hamilton and Halton.

“Perhaps the thing that we hear most from those we serve is that there is not enough respite support,” she said.

Day programs were also affected by the COVID-19 pandemic, limiting their operations and, in some cases, offering virtual programming.

“Most people want to stay at home as long as possible, but you can’t do it without support. So, we really need to look at innovative ways to provide support to these families,” Burnett said.

Finding out the best ways to support family caregivers is the subject of ongoing study.

McMaster University associate professor Dr. Pamela Baxter is part of a research collaboration studying how to support family caregivers who have loved ones with dementia in long-term care. Family caregivers interested in participating can contact Cheryll Sullivan at 905-529-7030, ext. 214, or 1-888-343-1017 or email at cheryll.sullivan@alzda.ca.

The search for a long-term-care home

In March 2019, John decided it was time to put Sylvia on a waiting list for long-term care. The day prior, a doctor assessed Sylvia and said she was going to get worse in six months.

John and Sam set off to tour Hamilton long-term-care homes together, visiting almost every home in the city and taking notes on the types of rooms — from a “basic” or shared room, to a private one — and programs available in each.

They came up with their top choices, among them being St. Peter’s Residence at Chedoke, an eight-minute drive from John’s home, and signed up for a private room.

“Sylvia has a habit of touching stuff … she loves to fold stuff like clothes and napkins,” John said. “We thought if she goes in a room with two people and she starts folding somebody else’s stuff, they’re gonna get upset. So, we thought a private room is good.”

Meanwhile, Sylvia’s condition worsened. She refused to shower, and it was hard even for PSWs and day program staff to take care of her.

The final straw came one November day when she cut a cord on an electric kettle. Thankfully, it was unplugged.

John and Sam worried that Sylvia posed a risk to herself. She was reassessed a few days later and the LHIN decided it was time to move her to the crisis list, which prioritized her for a bed in long-term care. Shortly after, a bed became available at St. Peter’s Residence at Chedoke.

Sylvia moved in at the end of January.

“To go into a long-term-care home the list is so long. It takes years sometimes to get into a long-term-care home,” said Sam.

There are 27 long-term-care homes in Hamilton Region, and 3,820 spaces in long-term care, according to stats available through the LHIN for Hamilton, Niagara, Haldimand and Brant. Wait-list lengths for individual homes are also reported online.

As of Sept. 30, the number of distinct individuals on the wait-list for homes in Hamilton Region ranged from eight to 590. On average, the number of beds — including basic, semiprivate and private — which become available in a facility each month ranges from one to 14.

The length of wait time depends on a patient’s circumstances as well as the number of beds available within a specific facility. The latest wait times are based on admissions into each long-term-care home for the past two years for people “who did not need immediate admission,” and are shown as the experience of nine out of 10 people.

According to LHIN numbers, wait times ranged from 142 days to 768 days for a basic bed, depending on the facility. For a semiprivate bed, the wait time was between 57 and 1,808 days. For a private bed, it was 114 to 1,585 days. Numbers were not available for all of the city’s facilities.

The numbers can change “based on a variety of factors,” an LHIN report notes. Individuals “may wait for a longer or shorter period of time” in practice.

Pandemic hits

After Sylvia moved into long-term care, John would visit her every day. They would watch TV together in her room, or participate in the home’s recreational activities, like bowling. She could still do basic tasks like eating on her own.

In March, provincial restrictions suddenly went into place because of the pandemic. Visitors were no longer allowed inside the home.

John and Sam couldn’t see Sylvia except through weekly window visits. (She “wouldn’t sit long enough” for Zoom calls, John said.)

Seeing a loved one only through a window was painful, they both said.

“I’d walk away and feel literally like my heart was broken, there was a piece of me that was empty, and then I had to pick myself back up and piece myself together,” Sam said. “Then your next window visit came and you get to see her again and then you leave, and then you’re shattered again.”

“That was very traumatic,” John agreed.

That lasted for five-and-a-half months.

In July, John and Sam could visit Sylvia indoors again. First, one caregiver. Then, two.

During the pandemic, visitor policies were inconsistent from home to home. In September, the province explicitly included family caregivers as “essential visitors.” Under the current policy, residents in regions with lower community spread of COVID-19 can designate up to two caregivers who can visit the home at a time, any time except during an outbreak. In regions with high community spread, or in homes in an outbreak, only one caregiver per resident can visit at a time.

On Oct. 28, Merrilee Fullerton, Ontario’s minister of long-term care, said the province tried to “strike the right balance” between resident and staff safety and family members’ ability to visit their loved ones during the pandemic. But with lockdown measures extending over months, some family caregivers expressed concern over the psychological toll the separation from loved ones would have on residents.

“In hindsight, it would’ve been better to have them in sooner,” Fullerton said of family caregivers.

John noticed Sylvia had changed over the previous five months. She was “not as sharp,” he said, noting sometimes he’s not sure Sylvia recognizes him right away.

She’s also not as busy folding like she was before, and he usually feeds Sylvia lunch now.

He and Sam aren’t sure if the decline is due to the pandemic, or a natural progression of Sylvia’s disease.

“I assume that not seeing a loved one, I’m sure that doesn’t do a lot for their mental health,” Sam said. But she and John both feel the long-term-care home was just trying to keep residents safe.

“All I want at the end of the day, even if I can’t see my mom is a healthy mom,” said Sam.

Ongoing guilt

Throughout their journey as caregivers, Sam said she and her father “made many errors,” but learned a lot. They are also grateful they didn’t have to go through the journey alone.

They worked together to research Sylvia’s disease, and sought help from the Alzheimer Society, including counselling and support groups.

“There’s also a lot of people who refuse to accept that their loved one has dementia. They’ll say, ‘Oh, it’s old age, just forgetfulness.’ If you notice changes, get help,” John said. “There is no cure for this horrible disease, so just reach out and get someone to help you.”

“I think dad as a caregiver kept mum home much longer than he should have, which I know that she would appreciate and I appreciate that too,” Sam said. “But there comes a time where you just have to say I can’t do this anymore.”

Still, John and Sam continue to struggle with the guilt.

“I feel worse now, leaving her in person,” said Sam. “Any caregivers who are going through the same thing, I feel you, I understand what you’re going through, I understand the sadness, I understand the feeling like, ‘Is this ever going to get better?’”

As for John, he’s been sleeping on a couch ever since Sylvia left, because he can’t bear the thought of sleeping in his bedroom.

“I’m sure one day, I’ll get over it, but at the moment it’s still a bit raw.”

Maria Iqbal, Local Journalism Initiative Reporter, The Hamilton Spectator