Take Care

Caring for a loved one isn’t easy. AARP Hawai‘i offers workshops, online and phone resources, and advocates for programs to help family caregivers.

Transitioning into the role of family caregiver is often overwhelming, isolating and stressful. Pat Bemis’ husband already had Parkinson’s disease when they married, so his progression wasn’t unexpected. But it was still heartbreaking. “When you realize you have to step in, it changes everything,” Bemis says. “It changes your dynamics with one another. It changes the amount of time you’re going to spend with them.”

When the shift happens suddenly, it can add another layer of emotion. In March of 2019, Keali‘i Lopez’s elderly diabetic mother suffered a debilitating stroke and seizure that changed everything for the whole family. Together with her two sisters and their children, Lopez had to quickly create a support system and schedule for her

Gardner and mother so that someone could be with

Pat Bemis her every day.

Caregiving by the Numbers

Family caregivers are increasingly diverse. Nearly 1 in 4 (24%) is a millennial, 40% are men and about 40% represent multicultural communities. Most family caregivers incur steep outof-pocket costs related to caregiving, spending $7,000 on average in 2016. Rising demand and shrinking families will increasingly strain family caregivers and those they care for. In 2010, in Hawai‘i there were six potential family caregivers for every person 80 years and older. By 2030, there may be only three potential caregivers for every person over the age of 80.

Caregiving resources

Caregiving website: aarp.org/caregiving Prepare to Care guide: aarp.org/ preparetocare AARP family caregiving Facebook group: facebook.com/groups/aarpfamily caregivers/ Local AARP-sponsored caregiving workshops: Check aarp.org/HI or the AARP Hawai‘i Facebook page and click on upcoming events. AARP caregiver support line: 877-333-5885

LIVING YOUR BEST LIFE (AFTER 50)

Take Care Continued

Today, that means balancing her busy job as AARP Hawai‘i state director while tackling unfamiliar medical tasks like administering insulin shots and changing catheter bags. She’s thankful that AARP spearheaded the passage of Hawai‘i’s Caregiver Advise, Record, Enable (CARE) Act in 2018, which made sure the medical team at the hospital trained Lopez and her family members on how to handle such tasks before her mom was discharged.

“It’s hard for people to know where to go and what to do after the realization that they’re going to be a family caregiver for a loved one,” Lopez says. To help with her own struggles, she attended an AARP caregiver conference. There, she learned about respite care, community resources and practical advice like how to use and where to buy special bed pads for her mother. “These were things I had never even thought about and didn’t know I would need,” Lopez says.

Most caregivers aren’t as qualified or prepared as Bemis, who is a nurse and uses her medical knowledge every day to care for her husband. Or as equipped as Lopez, through her work at AARP. According to a recent AARP study, approximately 157,000 family caregivers in Hawai‘i provided 131 million hours of care to their parents, spouses, partners and friends in 2017. The unpaid value of their work— medical and nursing tasks, food preparation, and more—translates to a staggering $2.1 billion.

Sometimes the most difficult step is finding somewhere to turn for help. AARP Hawai‘i has been a strong champion for helping older adults access home and community care services. The group actively advocates for the Kūpuna Care Program, and aging and disability resource centers. AARP Hawai‘i also offers workshops, presentations and conferences, educating and connecting people with groups, experts and information to ease the stress of a challenging new role.

Lopez says: “Nothing prepares you for caregiving. Going to resources like AARP can ease the burden— once you know what you need to do and where to get assistance, it becomes easier to fill that caregiver’s role.”

Advice from 2 Family Caregivers

1. Start the conversation early Both Bemis and Lopez stress the importance of researching and discussing care early, before it’s needed. “Be gracious and sensitive. Now is the time to make an assessment with your family on what the future holds,” Bemis says.

2. Seek help If you’re a primary caregiver, it’s easy to start thinking you’re the only one who can take care of your loved one. That’s not true. “Ask a friend to help pick up your loved one or pick up food,” Bemis says. Get started by reaching out to AARP for community resources and surround yourself with your team: family, friends, therapists or other caregivers.

3. Rest and connect Make sure you give yourself a break. “You have to carve out your quiet time,” Bemis says. Her self-care includes reading and taking weekly sewing classes. Find online connections like book clubs, classes and concerts at aarp.org/hi. And if you do lose your patience— it happens to the best of us— apologize and be kind to yourself. 4. Remember dignity “No one wants someone else to wipe their bottom,” Lopez says. Even in such tasks, Lopez makes sure her mother is always treated with respect. She is careful to let her know that she doesn’t mind and keeps the mood lighthearted. Lopez says it’s important to offer options, such as at meals, to help her mother have some control.

5. Be flexible You might have a plan, but your loved one may have other ideas. Be prepared to adjust and find other ways to make it work. Lopez used to keep bed rails raised so that her mother wouldn’t try to get out of bed without help. Mom doesn’t always remember that she can’t walk and needs help transitioning from her bed to her wheelchair. But Lopez quickly learned this made her mom feel imprisoned. “We had to come up with other strategies, such as leaving the hallway light on or keeping the door open so she didn’t feel alone,” Lopez says.