Barry J. Wu, MD, FACP, professor of medicine (geriatrics), is a caregiver to his 90-year-old mother, Louise, who lives alone in another state.
Louise has been widowed for 44 years. Before his father passed, he told Wu, “Be sure to take care of your mom, because she dedicated her life to us.” While Wu is the middle of three siblings, as the physician of the family, he feels the most responsible for his mother’s care.
In this conversation with Wu, he shares his experience as a caregiver to his mother and how that informs the advice he gives to other caregivers.
What is caregiving?
Caregiving is not only providing physical support, but also emotional and spiritual support. It’s a whole-person approach to care.
What are some of the challenges of caregiving for older adults and how do you address those?
Since I live in another state, I need to be informed of how she’s doing. I call her once a day at the same time, usually around five or six o’clock in the evening. I also visit her four times a year; you get more information when you’re physically there and can observe over a longer period. With the advent of cameras and her permission, I can check on her remotely with a camera in her living room, kitchen, bedroom, and bathroom to make sure she hasn’t fallen or needs help.
She did fall in 2017 and had acute cord compression to the point she could not walk. I consulted Leo Cooney Jr., MD, who was a big help when she underwent surgery. Today, she is ambulating with a walker and living in a senior independent living community.
As you get older, independence declines, and willingness to accept help can be challenging for all of us. In the past couple of years, she’s had a steady decline in her function, mainly her mobility. We’ve recently had a home health aide come in twice a week to help with some chores. It took a bit of convincing because she really didn’t want the help. Once she got it though, she now looks forward to each visit.
Do you experience any burnout from caregiving?
No, I don’t. I think a strong faith plays a big role in preventing burnout from caregiving. It may also be because I am fulfilling my promise to my late father. Finally, my brother lives close by to her, so if there’s anything urgent, I can always call him for additional help.
What training do you recommend for caregivers?
Patient Priorities Care (PPC) is an important way to educate the caregiver on priorities-aligned decision making, especially if you’re not a medical person or haven’t specialized in the care of older adults. The focus is on getting to what matters most to the person rather than just on longevity. As a caregiver, you need to hear what their values and health priorities are, not your own priorities. You want to hear what’s most important to them and do things that respect their dignity.
How did you discover what matters most to your mother?
My mother and I went through PPC’s My Health Priorities website together to identify her health priorities. It’s helpful to have caregivers go through it with the person they’re taking care of because then you can hear it together. We were sharing a common language on what matters most to her. It’s good to go through this every so often because health priorities can change over time, especially if function declines.
Were you surprised by anything when you went through My Health Priorities with your mother?
I thought quality of life mattered most, but function is the most important thing to her — to be independent and taking care of herself for however long that is. And when it comes time that she’s unable to do certain things, she does not want aggressive interventions.
It was also reassuring to learn through our conversations to hear she’s not fearful of death. What’s important to her is that everything is clear about what happens with her stuff. She wants to leave responsibly. She loves her children and her family and does not want to leave with any loose ends.
As a son, I felt like I knew what my mother wanted. But when we went through the questions together, I learned things about her I didn’t know. You may not fully know your family member — that’s why it’s important to hear from them instead of just assuming what their answer will be.
Patient Priorities Care (PPC) offers evidence-based tools and resources to help patients, care partners, and clinicians focus decision-making and healthcare on what Matters Most: patients’ own health priorities. Patient Priorities Care is suitable for any patient, but especially older adults managing multiple chronic conditions. PPC is a Yale research project from the Department of Internal Medicine’s Section of Geriatrics, led by co-creator Mary Tinetti, MD, who is the principal investigator on the grant. PPC is now focusing efforts on spreading awareness and training clinicians across the U.S.