Sisters share what they learned from caring for their mother
Gahlena Maxey Easterly and Donna Maxey cared for their mother, Johnnie Maxey, for twenty-four years before she passed away at the age of 101. Both of their parents were enrolled in the AADAPt (African American Dementia and Aging Project) program at the Layton Aging and Alzheimer’s Disease Center at OHSU. During those twenty-four years, they juggled their careers, aspirations, and personal lives, in addition to making sure their mother lived a healthy and happy life.
They share some advice about caregiving they learned over the years.
- Don’t have unreasonable expectations about teamwork: Prior sibling dynamics, birth order, personality strengths, and external responsibilities can all play a role in how siblings approach caregiving as a team. Both sisters acknowledge that every sibling should participate, but balance is difficult to achieve. “Be aware that everybody is not going to be doing things equally,” says Gahlena. She adds that it is important to prioritize according to siblings’ strengths and situations, so that you can do what you can, when you can. “There isn’t a perfect way to care for one’s parents,” she says.
Mrs. Johnnie Maxey, on the left, celebrates her 101st birthday in August 2020 with her daughter Donna Maxey, on the right. - Create moments of joy: Both sisters organized moments of joy, for their mother and for themselves. Gahlena worked at a florist distribution center and would bring flowers that would otherwise be discarded, back to her parents’ home. She would arrange bouquets in every room. “It brought my mother joy. It’s something I needed to do to keep my sanity,” she says. Johnnie was a bedrock of the community, who helped run their family’s grocery store in the past, so they would host large birthday parties for her. For her 100th, 300 people attended a party at Dawson Park. “We went all out for mom,” says Donna.
Mrs. Johnnie Maxey, on the left, with her daughter, Gahlena Maxey Easterly, on the right. Gahlena and her sister Donna took care of their mother for 24 years. - Have important conversations ahead of time: Donna, who was juggling graduate school and work at the time, emphasizes that communication is key. Conversations about caregiving ideally should happen before parents need that support. Siblings should not only talk about logistics, but about possible relationship changes – between siblings and between children and their parents – that come with caregiving. Gahlena adds “We often don’t think about it until it’s honestly too late.”
- Acknowledge the challenges but find ways to relieve stress: Both sisters mention that financial, physical, social, and emotional challenges often arise during the caregiving process. Situations like remodeling a home to better suit your aging parents, managing their meals, and carrying them and helping them get dressed take a toll on your body and psyche. Donna acknowledges that it was hard to turn the caregiving persona “off”, even when she went on vacation. “Your life can become wrapped around that person,” she says. Emotional actions, like trying to cheer your parent up, are more subtly challenging. Gahlena adds, “It was challenging to become the parent to my parent.” Both of them say that finding ways to de-stress is important, as is trying to set boundaries. They both like to walk, so forming a walking team and participating in an annual walking relay, was their way to relax. They were – and still are – involved in city civic life.
Though those twenty-four years had many trials and tribulations, many moments of positivity wove their way in. “We were phenomenal,” says Donna. “It’s amazing that we’ve done as well as we have for as long as we have.”
Both now retired, Donna and Gahlena are proud of their efforts taking care of their father, and for a longer period of time, their mother. “We made sure our mom was rewarded for all the years she sacrificed for us,” says Gahlena. “She needed to know she was protected and heard. That’s ultimately what everyone on Earth wants.”
If you’d like to learn more about the AADAPt program or our other research opportunities or caregiver programs, please call us at 503-494-7467.
The Multnomah County Family Caregiver Support Program – 503-988-3646 – and The Alzheimer’s Association are additional sources of support, 1-800-272-3900. Oregon Care Partners offers free caregiver training online as well: oregoncarepartners.com (on-line and in-person), 1-800-930-6851.
Two of our studies, the SHARP-CG study and the Tele-STELLA study, are looking for caregivers to volunteer as research participants.
If you would like to learn more, please contact us at adresearch@ohsu.edu or 503-701-8566.
