Listen, Ask for Help, Reach Out to Others, Say Kūpuna Caregivers
Caring for aging and ailing family members can be both a privilege and a path to burnout, which is why community support can make such a big difference.
Family nurse practitioner Poki‘i Balaz devotes most of her waking hours to kūpuna, helping caregivers and Native Hawaiians. She serves as director of nursing at Lunalilo Home, is a clinician at Kōkua Kalihi Valley and moved home from California to help care for her father, who is now in the advanced stages of Alzheimer’s disease. “I think I learned through trials that I had to be very upfront with my employers for what I needed, what I could do, where my limitations are, what I also brought to the table,” Balaz says.
Communicating honestly and asking for help were among the core messages from a panel of caregivers and professional advocates at the June 3 panel on Caring for Parents and Grandparents, the third session of our free virtual mental health webinar, Life Interrupted: Navigating What’s Next.
Balaz says she advises caregivers to create a specific list they would like help with so that when friends and family offer, they’re ready with options: drop off dinner on Wednesday night, stay with a family member from 8 a.m. to noon Saturday to free up time for the caregiver to go for a swim or meet a friend for breakfast, complete specific chores from 2 to 4 p.m.
Kumi Macdonald, executive director for NAMI-Hawai‘i, National Alliance on Mental Illness, devotes her working hours to helping people. And during the pandemic she found herself juggling a huge surge in community mental health cases while caring for elderly parents and a teenager at home.
“I am in that sandwich generation who care for aging parents while raising my own family and I was experiencing caregiver burnout,” Macdonald says. Yet even though her organization teaches the signs of burnout in classes, she didn’t recognize them in herself: “Why do I wake up every morning crying? And why am I struggling? Why is my memory so fuzzy? Why am I so tired?” A late-night internet search diagnosed her symptoms. She group-texted her siblings what she’d realized and they quickly responded. “That was a big wake-up call for me,” she says. “My sisters said you need some time off and they gave me a month off.”
As part of the National Alliance for the Mentally Ill, Macdonald’s organization offers free courses as well as family support groups, crisis intervention teams and workshops that can all be accessed through namihawaii.org. She knows that volunteer family caregivers shoulder a lot. In Hawai‘i, an estimated 51,000 caregivers provide a million hours of unpaid care for dementia patients, a service that’s valued at $1.6 billion, Balaz says.
Our Hawai‘i population is aging—one fifth of the state is expected to be over the age of 65 within the decade. And Balaz hopes that eldercare will gain support across the generations. While the pandemic made it clearer that parents need to balance work with childcare, Balaz says eldercare often gets ignored. She recalled when a coworker told their boss “my kid is sick, I have to go home and they’re like, sure.” When she told the same bosses a week later that her father was sick and she needed to go home the next week, they resisted.
Balaz feels fortunate to have family near. She notes that each family has a unique story, including one of her patients who lacks an extended network. “She didn’t grow up here, so she feels very isolated and alone,” Balaz says, “so we also have to acknowledge all the different journeys and types of family and circumstances that we’re all facing as caregivers.”
SEE ALSO: 2021 Kūpuna Resource Guide
Mestisa Gass, program director for Mental Health America of Hawai‘i, says all these experiences show why the burden of caregiving shouldn’t fall only on caregivers. “As a community we should rally,” she says, to share our experiences through webinars like Life Interrupted and other resources because Gass says most will feel the impact of caregiving at some point in their lives. Gass also offered simple but powerful advice on what to say to caregivers and those going through tough times: “It doesn’t go away, platitudes don’t help. Just say ‘I love you. I might not know what to say, but I’m here for you.’”
Yonceil Yara, a counselor/marriage and family therapist who practices at The Kāhala Clinic for Children and Family, urges everyone to realize we all need help. “We’re not alone, we have a village of support, and there’s so many people who are untapped resources,” Yara says. She adds that support can come from friends, family, groups as well as mental health professionals.
All of the caregivers stressed they feel privileged to be able to care for family members, even through difficult times. AARP Hawai‘i State Director Keali‘i Lopez emphasized that while she and her family members feel a special bond in pulling together, it can feel hard and awkward when children care for their parents, a role switch that often weighs heavy on all generations. Realizing that she and her sister can’t do it all with their aging mother who suffered a stroke, Lopez says they rely on other family members, too. “So my children help take care of their grandma. My grandson helps take care of his great-grandmother. He’s one of the few people she actually listens to and he’s 11 years old,” Lopez says with a smile.
Macdonald also points people to Xavier Amador’s book, I Am Not Sick, I Don’t Need Help. It’s also available from nami.org and she especially appreciates a few tips that spell LEAP: listen, empathize, agree and partner. These actions can help guide difficult discussions that should begin with the most important tip, to listen without telling someone else what to do.
And Lopez reminds everyone to take time out when they feel stress building. “If you’ve got to step away for a little bit, go outside, take a deep breath, look at the ocean, look at the sky, the mountains or whatever it takes for you,” she says. “Reconnect with yourself and your love for your loved one. And, then go back and do what you need to do because you know the one thing we don’t want to do is beat ourselves up. We’re all trying our best.”
After Macdonald asked her kids to help care for her mom, she says her daughter learned to cook and went back to UH to get her degree: “She is now a nurse and works at a care home part-time and is pre-med.”
Mahalo to Dr. Jason Keifer, Brain Health Hawai‘i and the Kāhala Clinic for joining us as presenting sponsors for this year’s webinars. Our series began in May, which is Mental Health Month to help draw attention to the issues, nudge us toward solutions and illuminate resources available to all of us. Thank you to our silver sponsor: Hawai‘i Association of Independent Schools; and mahalo to our community partners Mental Health America Hawai‘i and NAMI (National Alliance for Mental Illness)–Hawai‘i.
Missed a session? Find them at honolulumagazine.com available whenever you are.
Look for the final session, Alarming Trends and Silver Linings, next on June 17 at 1 p.m. Sign up here.