Taking time for yourself when caring for others

During the chaotic COVID 19-pandemic, Rachel Beattie found her life in complete upheaval. Within a matter of days, her once-active father became paralyzed from the neck down — a consequence of Guillain-Barré syndrome, which leads to catastrophic effects on the nerves.

“Because of his condition it was imperative that someone was with him in the hospital at all times,” said Beattie. “I dropped to four days a week at work, and then three, then I burned through my vacation and sick days and started taking unpaid time.”

The pain, stress and sense of being overwhelmed she experienced during that time in her life — a period when the young mother and hotel director was thrust into the complex and often-isolating world of caregiving — is still fresh in her mind.

As well as helping her father, who was eventually released from the hospital, she was tasked with selling the family home and taking over the care of her ailing mother. She had no time for herself. 

“I didn’t get a haircut for over a year,” she said. “I mean, how could I prioritize those kinds of things when the man I love more than any other in the world is struggling to breathe?”

While Beattie’s story is unnerving, it is far from uncommon. Leila Fenc, executive director of the Petro-Canada CareMakers Foundation, said research has shown most caregivers are often ill-prepared for their role.

“All these factors that come together lead to high levels of stress, anxiety, depression and a host of other mental health challenges,” said Fenc, whose foundation aims to reduce the burden on, and raise awareness about, caregivers in Canada. “Many feel that they simply don’t have enough hours in the day to make time to focus on themselves.”

Fenc said there are two important reasons why it is vital for professional or unpaid caregivers need to engage in self-care. The first is that a person cannot take care of someone else effectively if they are not taking care of themselves. And second, she said, is that personal wellbeing is one of the foundations of achieving fulfillment in life.

“An unfortunate trend has emerged in recent years that associates self-care with spending lots of money,” she said. “The truth is, self-care is simply carving time out to do something for yourself, and it doesn’t have to cost a dime.”

For example, Fenc said a caregiver might find a form of exercise they enjoy, like doing 15 minutes of stretching or a going on a half-hour walk through their neighbourhood. Or, she said, a caregiver might set aside a few minutes to read a chapter of a book, meditate or write in a journal.

“You might also take the time to connect with someone you enjoy spending time with, even for a quick coffee,” said Fenc. “Remember that you need support, too.”

Tina Falcigno has been the primary caregiver for her daughter, who was born with a complex genetic syndrome that results in extensive medical and physical difficulties, for 22 years.

While the experience has been immensely challenging, Falcigno said she has found comfort in advocating for others in her position, and engaging in activities that her daughter would never be able to.

“Caregivers need to be thick skinned and stand up for what they need for themselves and their loved ones,” she said. “They can't let others tell them how to cope with the struggles. They need to find people who can give the caregiver what they need to cope.”

Beattie echoes that sentiment. She said she has learned to be more assertive when it comes to speaking out when she needs help. That in itself, she said, has become her form of self-care.

“Often people just don’t know how to help when someone they know is facing this sort of situation,” she said. “Bring me lunch, come to my house and take my kid away or me away for an hour, break into my house and vacuum — don’t give me room to protest.” 

Falcigno said becoming a union steward for the Ontario Caregiver Coalition and advocating for the recognition and support of other caregivers, has also been particularly helpful for her well-being —and a way to find meaning in difficult circumstances.

“I take all that negativity, frustration, and heartbreak that I have experienced,” she said, “and I redirect it to help others.”

Falcigno said she has even recently pushed herself to start dating again. “I try to go out on a date at least once a week,” she said. “I also have two jobs, which help me create some distance from my daughter. But I work because I need to support her. So really, working is for her more than me.”