Caregiver Voices: Taking Care of Yourself Can Mean Saying No

From her home in the Twin Cities, Laura Gilbert provides long-distance caregiving for her mother in Florida. Laura spends a lot of time on the phone with her mother while paid drivers and neighbors provide day-to-day assistance. In the past, Laura frequently flew to Florida on short notice to provide care and left her job because she was traveling so often. Today, Laura makes regular visits to Florida and is always on call for emergencies.

“I’m able to stay awake a lot longer than I thought I could,” Laura says. On many occasions, she has stayed up all night working in the background to meet her mother’s needs in addition to handling the responsibilities of daily life. “Challenges like that are things people don’t see,” she says.

Support Group Provides Empathy and Willing Listeners

Laura has found others who understand her story in a monthly support group at the Wilder Community Center for Aging for adult children who are caregiving for parents. “It’s been really, really helpful,” Laura says. “It’s one of the rare places that I’ve found where I don’t get people telling me what I should do.” Elsewhere, if Laura responds to a question about her mother with an explanation of some of her mother’s challenges, often the other person will advise Laura on how she should handle the situation – with no understanding of the actual situation or dynamics. “Here I just get people who listen and empathize,” she says.

Laura says her family dynamics have added extra challenges to caregiving. “Growing up, I was a caregiver as much for my mother as she was for me, for a variety of reasons,” she says. But Laura says that even caregivers who had more typical parent-and-child relationships encounter challenges from changes in roles and expectations placed on caregivers – both by the care recipient and professionals. “People who mean well can unintentionally put a lot of stress on caregivers because they don't know the family dynamics,” Laura says.

Taking Care of Yourself Through ‘Loving Boundaries’

Because of the stress of these expectations, caregivers need to take care of themselves, Laura says, which can be a challenge in its own right. “Taking care of yourself amounts to having loving boundaries… It’s absolutely critical in order to maintain your own sanity, your own health, your own family system, and your own work.”