Taking care of caregivers: New program offers support

Reaching out for help or support can be difficult for many people. 

It can be even more difficult for unpaid caregivers who regularly provide that help and support to others.

“A primary caregiver might be a good support system themselves, but they still get burned out,” says Nancymarie Arsenault, Executive Director of Hospice PEI.

“But when you give them the opportunity to say, ‘I’m really tired’ or ‘This is really hard’ – and when they know you understand how hard it is – you create a safe place for them to talk about it.”

That safe place is Hospice PEI’s new Caregiver Support Program, a program that helps unpaid caregivers navigate the end-of-life journey with a loved one who’s dealing with their palliative diagnosis or life-limiting condition.

“When we think about the role of caregivers, some of them are put into those roles unexpectedly,” says Arsenault. 

“Whether it’s an adult child looking after an elderly parent, a couple caring for their partner, or a parent caring for a child who has a diagnosis of autism – that’s caregiving.”

Over the years, Hospice PEI recognized a need to provide caregivers with support, says Arsenault.

“There were very few options. Their options were their circle of people. But after a while, those people can fall off and caregivers can lose those connections, lose that support.”

So, with help from a grant from the PEI Alliance for Mental Well-Being, Hospice PEI developed its first specialized Caregiver Support Program – a peer to peer-based program where caregivers can share their experiences and learn skills to help manage their mental health.

When Arsenault learned funding was available to organizations that help support mental well-being, she applied right away. 

“The work we do at Hospice PEI aligns with improving mental well-being, not only for the diagnosed person, but for their loved ones on that journey.”

The funding allowed Hospice PEI to support caregivers’ needs, hire a specialized coordinator to train facilitators, and pay the volunteers who are supporting the program an honorarium to attend the two-day training session.

“Working with the Alliance was seamless,” she says. 

The PEI Alliance for Mental Well-being is a government-supported organization that works to strengthen and support initiatives that build individual, family, and community resilience.

Peer to peer programs, like the Caregiver Support Program, can help build resiliency and teach participants self-care skills to help prevent burnout, Arsenault says.

“Emotionally and physically healthy caregivers are able to provide better support and care to their loved ones.”

The first Caregiver Support groups began in July and will run till the end of November, when an evaluation and final report will be completed and submitted to the program’s funders. Hospice PEI has committed to run the groups as part of their ongoing services.

Meetings are held once a month in Charlottetown, Summerside, and West Prince.

Arsenault says she is already seeing and hearing about the program’s positive effects, with participants already asking when the next group will meet.

People feel comfortable sharing their experiences with their peers, says Arsenault.

“There’s no threat, no judgment, no anything,” she says. “The role of these groups isn’t to give direction. It’s just to listen and share the community of knowledge.”

The funding received from the Alliance will also allow Hospice PEI to learn what works and what doesn’t work for the program, says Arsenault.

“We want to provide what people are asking,” she says. 

“If we build it and it grows, then we'll grow along with it.”