It’s OK for Care Partners to Prioritize Self-care

Here’s How Care Partners Can Avoid Serious Burnout

Self-care can be the most important thing you do for your loved ones

Jane Vock has seen her share of care partner burnout. As the Caregiving Program Manager at Elizz, the home care provider arm of SE Health, Vock has spent the last 20 years coaching care partners to understand and navigate the needs of people with dementia.

She recalls one client whose mother had recently moved in, thinking that was the answer to her need for daily care. Unfortunately, the constant worry and unpredictability of her mother’s behaviour made it a bigger challenge than she had anticipated. Periods of clear thinking would be followed by silent withdrawal or disorientation. “She was becoming really resentful,” notes Vock. “She was impatient with her mother and would even yell at her sometimes, when her mother repeated herself or asked for something. These are all signs of potential burnout.”

Vock worked with her client to better communicate with her mom by modelling tasks and using gestures, reaching out to her brother to pitch in and, perhaps most importantly, making sure she took time for herself.

Self-care – or lack thereof – is a major challenge for loved ones who are also care partners. Most are under an enormous amount of stress, and constant uncertainty makes it difficult for them to make time for themselves. Unless they have strong family support or the financial means to pay for private care, care partners shoulder the majority of the work, says Vock.

An increasing number of Canadians will find themselves in these situations, too, when you consider the percentage of the country’s aging population who will have dementia. Statistics from the Alzheimer Society of Canada estimate that there were 597,000 people living with dementia in 2020, and that number is expected to increase to nearly 1 million by 2030.

It’s important, then, that care partners have the energy to be both effective and empathetic. Helping someone with dementia has been linked to higher levels of burnout than other forms of caregiving. People with dementia typically require more supervision than those with more physical illnesses, are less likely to express gratitude for the help they receive, and are more likely to be depressed.

If you are the care partner, you must take care of yourself, says Vock, or you’ll risk feeling resentful, frustrated and angry. That means taking responsibility for meeting your physical, mental, emotional and spiritual needs. “Sometimes care partners get caught up in either/or thinking,” she notes. “Either I need to take care of them or take care of myself. We’re saying it’s not ‘you’ or ‘them’ – it can be both.”

Here are Vock’s top strategies to help family care partners avoid burnout.

Reach out for resources. Care partners need to take advantage of programs to help mitigate their worries. Elizz, Vock’s organization, offers respite care to give family care partners a much-needed break. The MedicAlert Safe & Found program is also designed to provide peace of mind to care partners. If your loved one becomes disoriented and lost, a call to the 24/7 hotline can help locate them - thousands of first responders have been trained to recognize the condition-specific ID as well as how to access the person’s health information that provides details not only about their dementia, but also past wandering history, favourite places to go, de-escalations and pertinent details about other health conditions that may be more likely to impact a person’s wellbeing if they wander. It’s this level of detail that helps MedicAlert reunite families in more than 90% of cases without any significant adverse health impacts. And for those living in Ontario, there’s the relatively new Ontario Care Giver Organization which provides a host of services and supports for care partners.

Take responsibility for your self-care. Self-care must be defined as a responsibility, even if you’re watching a movie, reading a book or taking weekly yoga classes. “We aren’t talking about wants, which are optional,” says Vock. “We’re talking about needs, so it has to be on the agenda. Talking about self-care in terms of needs helps people move away from the feelings of guilt and selfishness that often come up for care partners.”

Make time for self-care in your routine. Self-care isn’t something that just happens. You need to schedule it into your week. Even putting a five-minute break into your calendar every day can help, says Vock, who often hears care partners say they don’t have time to do anything for themselves. “You could do a breathing exercise, read, or go for a walk. It all counts,” she explains.

Have open and honest conversations. Communication between the person with dementia and their care partner is essential. Care partners sometimes make assumptions about what the person they’re caring for needs or wants, without actually talking to them. This can result in frustration and misunderstandings between the two parties at a time when life is already challenging. “If possible, have a conversation with the person you’re caring for. Be open about what’s changed and how you can work together to move this care plan forward, so you won’t feel as if you’re on your own trying to solve everything.”

Vock’s biggest reward is seeing the difference it makes when care partners have the information and support to put self-care on their agenda. “Once they realize this is really helping them feel a lot better, they start doing things they enjoy, and by extension, it also makes a difference for the person they’re caring for.”