Looking back at nearly two years of living in a COVID-19 world, many of us feel as if time has stood still, and we’re eagerly waiting for life to return to normal.

For people in our communities living with dementia and for their care partners, this period has forever changed their lives. Joan Craig remembers her family holiday to Jamaica two years ago as one of the last memories of life feeling like normal.

“It was the only time in our lives we had a winter holiday, and everything went well,” she shared. A few months before, her husband Dann had attended Carefor’s Perley Adult Day Program following his dementia diagnosis, but he didn’t feel like he fit in. “After we came back, I noticed that Dann’s dementia was progressing.”

Dann rejoined the program shortly after their trip. As his dementia progressed, they both found the in-person program life-changing. “The staff knew how to make him feel special,” Joan said.

Much-needed break

Carefor’s program provided not only a special time for Dann, but also for Joan.

“When I dropped off Dann for a six-hour in-person program, those were hours I could pretend to be me again: to get a haircut, meet somebody for coffee, or clean the house. It’s not always the respite people think, but it’s needed.”

While caring for the ones we love is simply second nature, the reality is that no one is fully prepared to be a care partner. The Carefor Perley Program is one of three dementia programs currently offered by Carefor that strives to provide more than respite, but also a support system to lean on.

“They pay attention to each caregiver and their individual needs. They provide valuable information on different topics and teach you how to handle some tricky situations,” Joan said.

Once the pandemic hit and Carefor quickly transitioned to virtual day programs, like many caregivers, Joan felt the strain of caregiving for someone living with dementia amid a pandemic as many resources were put on hold.

“I saw him declining right in front of my eyes. The extra respite we received meant the world to me. They just knew how to reach him. That said, when you’re stuck at home, those special touches from Carefor staff like acknowledging birthdays, holidays, facilitating bingo games, and just finding ways to make people feel good went a long way.”

In early May, as Dann’s dementia rapidly progressed, an incident that would last only six seconds would alter the course of their lives forever.

The transition to long-term care (LTC)

Dann was admitted to hospital after falling from steps in his home. Shortly after, he got pneumonia and had to stay an extra six weeks in hospital. Upon hearing the news, the Carefor Perley Program reached out to support.

“It was the Zoom sessions that saved the day,” Joan admitted. From coffee chats, music, to exercise sessions, the virtual meetings provided something for both people living with dementia and their care partners. “While it wasn’t the same as in-person, it created a routine. It was a time for your loved one to feel special again, which goes a long way.”

In June 2021, Dann moved to LTC. “I needed more help. I needed more respite. I couldn’t do even simple tasks.” Joan described it as a cry for help. “I know Carefor did everything they could do.”

The decision to transition a loved one to LTC is not easy. Carefor’s programs strive to keep loved ones at home for as long as possible. Carefor Program Manager Isabelle Chartrand and Team Leader Erica Miskiman run the Perley program and understand the value of such a support system for this community.

“There are lots of emotions like relief, guilt and anxiety when care partners struggle to support their loved ones and have to make the decision to move them to LTC,” Isabelle said.

Despite the change, Joan has continued to stay in contact with the Carefor team.

She continued to participate in the virtual programming not only for its engaging activities, but also to simply see other people and interact with them during an isolating time.

“The relationship doesn’t end after they’re discharged from our care,” Erica said. “We’ve been part of their lives for so long, so they’ll always be part of and welcome in our community. We aim to reduce their isolation during this transition. We know how difficult this time is for care partners, so we’re there for them until they’re ready to let us go and build trust within another community, like a LTC home.”

Joan’s story isn’t a first, but among many others who have been impacted by the challenges of caring for someone living with dementia during a pandemic. Supporting Carefor’s programs means ensuring essential support systems are there when families need it.