By Fran Yanor, Local Journalism Initiative

Caring for someone with dementia can feel like an endless loop of not enough, never enough, and without self-care strategies, caregivers can set unmeetable expectations and confuse guilt with grief.

“Even pre-COVID, caregivers probably wanted to be able to do more to support the person they were caring for,” said Carly Gronlund, provincial coordinator program development for the Alzheimer Society of B.C. “Quite often that involved regular visits, routine, consistent engagement, and now all of that has been prevented because of COVID-19.”

One million people, mostly women, provide unpaid care for adult family members and friends. The pandemic has precipitated the shut down of community respite programs, outreach classes and in-home support care for people with dementia. This places an even heavier burden on the one million people in B.C. who provide unpaid care for adult family members and friends. Any loss of community services as families across the country have experienced under the pandemic, hits caregivers particularly hard.

“Many of the in-person services are closed,” said Clay Barber, president of Family Caregivers of BC, which said family and friends provide up to 80 per cent of home care providers in the province. “Meaning there has never been a greater need to support caregivers.”

The Ministry of Health recently allotted $500,000 grant to the FCBC, which operates a Caregivers Support Line, and caregiver education and training.

The loss of respite care can add to the burden of their workload. Many have other jobs or family to care for and rely windows of relief, such as respite, to work at their jobs, or perform some self-caring activity. Yet, thinking of themselves when the person with dementia is suffering can feel selfish.

Many callers to the Society’s First Link Dementia Helpline are worried about how the person they’re caring for is managing change, a loss of routine, and the isolation, said Gronlund. “And our staff will pause for a minute and redirect the focus to the caregiver.”

Any change for the person with dementia, is also a potential restriction on the freedom of the caregiver, who might, then, despite their best efforts, resent the impingement and simultaneously feel guilt for their resentment.

A first step could be to see the challenges of the pandemic for what it is.

“This was very unexpected, we could not have prepared for this,” she said. Shining a light on feelings of inadequacy could reveal its shaky foundation.

“Guilt is a pretty heavy feeling,” said Gronlund. The Alzheimer Society conducts webinars and workshops on a range of issues, including one on guilt, which helps participants recognize the source and question whether the feeling is justified or accurate. For instance, an able-bodied person might feel guilt about continuing to do an activity that she used to do with her husband.

“Maybe she’s feeling guilty because she still goes,” said Gronlund. “Is she doing anything wrong? Or is the guilt actually grief that he can no longer come and participate?”
According to FCBC’s Self-Care Strategies for Family Caregivers, self-awareness and self-compassion are integral to self-care. Self-awareness “means being aware of your internal state and monitoring your inner thoughts and emotions as they arise,” the report states. Caregivers should ask themselves questions, such as, ‘What will support me in this moment?’ Self-compassion, on the other hand, includes self-kindness, common humanity and mindfulness as its core components. Dr. Kristin Neff, a self-compassion researcher and motivational speaker, who is based as an associate professor at the University of Texas, is quoted in the report as saying self-compassion is key to avoiding burnout. Neff distinguishes self-criticism as asking,

‘Am I good enough? Versus, self-compassion, which asks, ‘What’s good for me?’