When women become largely responsible for a chronically ill or disabled loved one, their own well-being often falls by the wayside. And other life priorities – career, kids, dating, hobbies and interests – become increasingly hard to juggle or make time for.
Of the eight million caregivers in Canada, more than half are women. And while the median time spent caregiving is three to four hours per week for each gender, female caregivers are still more likely to spend more than 20 hours per week on caregiving tasks than are their male counterparts, according to a 2012 Statistics Canada report, “Portrait of Caregivers.”
Kathleen Fraschetti, a kinesiologist, and Emily Fraschetti, a final-year kinesiology student at University of Waterloo, began caring for their mother, Moira, who has early-onset Alzheimers when Kathleen was still in university and Emily was attending high school. The sisters appeared in the TVO documentary, Much Too Young, which gives a candid view of what life is like for the caregivers of a loved one with Alzheimer’s.
At a 2018 MIND MATTERS: Women, Technology and Tech event presented by AGE-WELL and Women’s Brain Health Initiative in Toronto, the Fraschetti sisters spoke about how they manage their responsibilities as well as taking care of themselves. A combination of trial-and-error strategies and high-tech solutions have helped their family navigate the care of a loved one in cognitive decline. Here are some of the insights they shared:
Help your loved one get social
When leaving the house becomes a challenge for someone with medical needs, isolation and emotional dependence can set in. Both can be mitigated to some extent if you help your loved one learn more about the forms of online communication suited to their current abilities. That might mean scrolling through an out-of-town relative’s Instagram images together, setting up an e-mail account for your loved one to send and receive messages, or showing them how to Skype with their grandkids.“Health care should be so much more than taking care of someone’s physical ailments. [As a kinesiologist] I often help set up older adults with social media, so they can stay connected with their children or family overseas,” said Kathleen.
Invest in tech that puts your mind at ease
The Fraschetti family has set up several systems to help keep Moira safe at home. “The lights automatically come on if Mom leaves her bed; she has a tile on her foot to keep track of her whereabouts [through an app], and each time the door is unlocked or the stove is used, Dad gets an alert,” explained Emily. Other tech solutions are available to those who don’t live with the person they care for. By allowing caregivers to access their tablet remotely, such systems can set up notifications about activities and the day’s appointments. And for patients who struggle to remember their meds, there are automatic pill dispensers, which unlock the right pills at the right time and sound an alarm as a reminder to take them.
Educate yourself so you can educate your health care providers
Feel like the person you care for is not getting the attention and resources they require? “It’s important to speak up and talk to every person you can and say, ‘This is what’s needed,’” said Kathleen. To find out what’s available, join forums relating to your charge’s condition; consult online medical libraries, and set up e-mail alerts so you’re among the first to know when new research has been published. Even if your loved one has a rare condition, you can connect with caregivers virtually on the other side of the world and brainstorm solutions to bring to your healthcare providers as treatment options.
It takes a team
If you’re in the fortunate position of caregiving as part of a small team, the best thing you can do for one another is to watch for signs of fatigue and burnout then offer to step in and give your fellow caregivers breaks. Emily said, “It’s good when other people recognize your situation, so you don’t feel like you’ve failed or let someone down.”
Practise self care
Don’t roll your eyeballs at this advice. Make. Time. For. You. Emily took up running to give herself something else to focus on and to stay fit, healthy. She’ll soon be running her first half marathon. Kathleen is completing a craft project her mother began before her cognitive health declined. Their brother likes to unwind on his PlayStation. It’s also important to pay attention to your own medical concerns – even if your niggles or stressors seem insignificant next to the symptoms of your loved one. “Make sure you have your own health team,” she said. “If I’m not healthy I can’t take care of anyone else.”
Don’t put your life on hold
Caregiving for someone with significant needs can become all-consuming. But Kathleen said, “If you sit and think about it all the time, it becomes the most depressing thing ever. You’ve got to move forward with your own life and focus on other things that need to get done too.”
For the sisters, this has included finishing their education, setting career goals, and most recently for Kathleen, moving out of the family home. Aspiring to have it all is most likely the path to disappointment for a caregiver, but as Emily said: “When that person is gone, you’ll continue to be here, so you can’t make them your whole life; you still need your own goals and dreams.”