After 12 years of caring for her husband who was diagnosed with Parkinson’s, on top of being celiac and diabetic, Helia was exhausted and overwhelmed. The daily tasks of caring for her immobile husband’s every need had been taking a toll for a long time.
As her husband’s condition got to the point of hospitalization, Helia arranged for him to go into a long-term care home for further medical support. However, her caregiving tasks didn’t disappear. Caregivers are still on duty when loved ones go into long-term care homes—they’re waiting for a call, processing their emotions, and so much more.
Helia realized her daily routine of being a caregiver had become too much to handle emotionally and physically, and she needed to reach out for help. As luck would have it, she noticed an advertisement in the local paper in Renfrew that highlighted just the place and the kind of help she needed.
With support from United Way East Ontario, Hospice Renfrew delivers programming that provides a safe space where caregivers can take a break from their daily routine, and find reassurance and comfort while supporting their loved ones.
The program taught Helia that it’s okay to put yourself first and to say no sometimes. It helped her to understand that she’s not alone with all the anger, grief, guilt, and frustration she feels.
Unsung healthcare heroes
In 2012, an estimated 3.3 million Ontario residents like Helia provided care to seniors and adults with disabilities who need support with their daily living. These family members, friends, and neighbours provide critical relief for our already strained healthcare system.
The tasks of a caregiver are mentally and physically strenuous, not to mention having to deal with the complex emotions that come with the job.
The Canadian Institute for Health Information indicated that one in three caregivers in Canada are distressed, “which can include feelings of anger or depression or the inability to continue with caring activities.” This research also shows that unpaid, distressed caregivers are providing the equivalent care of a full-time job: 38 hours per week.
And this was before COVID-19 reached our communities.
Julie Keon joined Hospice Renfrew in August 2020 as a grief and bereavement counsellor. She works with caregivers and guests through the Nurturing the Caregiver program to provide a safe space to unpack complicated feelings and peer support. Even before the pandemic, Julie noted that caregivers were already feeling alone and isolated— and the pandemic only intensified these struggles.
Without support, these informal caregivers are at risk of burnout, isolation, and poor health outcomes. Programs like Nurturing the Caregiver are crucial because they bring the caregivers out of their homes to lessen the common effects of caregiving, especially in rural areas.
Working better together
In 2019, United Way, along with the Champlain Dementia Network and the Champlain Community Support Network, completed a strategy and road map to help guide the organizations that serve seniors and caregivers. The recommendations in the Eastern Ontario Caregiver Strategy are built on extensive consultations with local caregivers. These took shape through a series of surveys, focus groups, and in-person interviews with more than 200 local caregivers.
Helia’s story is unique, and yet she is only one caregiver out of the millions facing challenges to supporting their loved ones. While we untangle and tackle the systemic issues facing caregivers, programs like Nurturing the Caregiver provide respite, connection, education, and peer support to lessen the isolation caregivers like Helia experience daily.
Support caregivers in your community.