A Caregiver’s Story

Caregiving is taxing. That’s why AARP Hawai‘i advocates for tax credit programs, holds workshops and offers resources for kūpuna and their caregivers.

When Puni Kekauoha thought about retiring, she imagined traveling the world, working on hobbies and enjoying life with friends. But when her mother was diagnosed with Alzheimer’s disease in 2009, she put those plans aside. Kekauoha has been caregiving ever since, first for her mother, who died in 2018, and now for her father, who has been diagnosed with vascular dementia.

“For us local people who have been fortunate to be raised well by our parents and grandparents, that choice to give up those things is a no-brainer,” Kekauoha says. “A loved one needs my help and you realize how much they sacrificed for you, and it overshadows everything else.”

Kekauoha’s situation is not uncommon in Hawai‘i. A 2021 AARP Hawai‘i survey found 32%, or nearly a third, of residents 45 and older are providing unpaid care to an adult relative or friend. In the United States, about 48 million adult family caregivers spend about 26% of their income on average caring for loved ones; that’s about $7,242 annually. COVID-19 magnified those sacrifices, with 42% of caregivers spending more time and money on their loved ones. Caregiving is never easy, but for people taking care of others with conditions like Kekauoha’s parents, it can be especially emotionally taxing. By the end of her life, Kekauoha’s mother had reverted back to her childhood and no longer recognized her grandchildren or Kekauoha herself. Her father is not always cooperative and is heavier and stronger than her mother was. Even with an extended family to coordinate caregiving and a strong supportive network through her church, Kekauoha struggled. In 2016, she had a stroke while standing at the foot of her mom’s bed. She had another a year later. “The amount of stress I put on myself took me out,” Kekauoha says. “You don’t have time to care for yourself. I wasn’t sleeping well or eating well.”

One source of support for caregivers

LIVING YOUR BEST LIFE (AFTER 50)

A Caregiver’s Story Continued

like Kekauoha is AARP Hawai‘i, which has been a champion for caregivers through a variety of initiatives. The group actively advocates for funding caregiver support programs and aging and disability resource centers. It also offers workshops on caregiving, and presentations and conferences to educate and connect people with other groups in the community.

“My mom and I were both members of AARP Hawai‘i and they are a good source of information and resources,” says Kekauoha, who is associate director of the nonprofit Kula No Na Po‘e Hawai‘i. “They’ve kept us up to date on legislation and policy matters that affect our community and kūpuna. Together with AARP Hawai‘i, we’ve built stronger networks, group partnership and creative funding opportunities. We’ve been very blessed to have lots of partners locally.”

The strokes were a wake-up call for Kekauoha. Today, she’s found a healthy balance. She makes sure to share what’s going on weekly with her church support system, meets with her pastor once a month, takes daily walks and whenever help is offered, she takes it. She and her doctor are also monitoring her heart closely after the strokes. “It’s important to build a village,” Kekauoha says. “Even if it’s just someone offering to sit with Mom so you can take the hour and go outside under the tree to just breathe. Take the help.”

And she treasures the memories she built with her family. She remembers fondly the annual camping trips to Nānākuli Beach, which her mother loved.

“Look for shiny moments like having a good laugh with kūpuna,” Kekauoha says. “Cherish the happy moments.”

AARP Hawaiʻi offers support and care for caregivers. Find resources at aarp.org/caregiving and the discussion group on Facebook, facebook.com/groups/aarpfamilycaregivers.

Advice from 2 Family Caregivers

1. Talk about caregiving early Ideally, the discussion about caregiving should begin before your loved one starts ailing. Research and plan who will be the primary caregiver and the support they may need. 2. Be part of a caregiving team It takes a village. Caregiving should not solely fall on you. Be sure to create a team for yourself that may include friends, family, physicians, therapists and a support group. Family caregivers should be present with their loved ones during doctor’s visits to provide a full picture of what is going on with the patient at home. Patients often tell their doctor that everything is fine instead of sharing real health or cognitive issues. Caregivers and their physicians need to address challenges together. Reach out to AARP for more resources and lean on your caregiving team for help. 3. Self-care is caregiving too Make sure you give yourself a break. Accept help whenever it is offered. Let others take some of the weight off your shoulders or make caregiving a little easier. “It’s easy to start counting down the hours, especially if you’re the primary caregiver. You have to carve out your quiet time,” says Pat Bemis, who cares for her husband, who has Parkinson’s disease. Kekauoha’s self-care includes walking, meeting with her pastor or drawing strength from a weekly Bible group. 4. Be flexible Caregiving will not be the same every day. You’re caring for a loved one who has their own wants and needs and accomodating both can be challenging. Figure out ways and methods to adjust and respect their wishes while also finding ways to get things done.