Our concept of ‘ohana includes caring for our loved ones, young and old. This is one reason many families choose to care for their elderly at home. According to a recent study done by the AARP Public Policy Institute, Hawai‘i has an estimated 106,000 family caregivers. But Barbara Stanton, the state AARP director, believes this number is conservative, estimating the actual number to be nearly 200,000.
“We think those numbers are much lower than the reality and it’s because people don’t self-identify as family caregivers,” adds Wes Lum, who works with the Hawai‘i Family Caregiver Coalition and is the assistant specialist at the University of Hawai‘i Center on Aging. Many don’t think of themselves as caregivers when they drive Grandpa to Longs Drugs to pick up his medications, but start to when they have to feed and dress him.
Care-giving services—whether driving a loved one to doctor appointments or helping move them in and out of bed—are worth an estimated $1.25 billion per year in the Islands. Many caregivers give more than 20 hours a week in unpaid services assisting parents, relatives and even neighbors. To do so, many disregard for their own physical, mental and financial well being.
“That’s a huge amount of money. It just shows you the scope of what they do and how difficult it can be, especially if you’re working,” says Susan Reinhard, the senior vice president of the AARP Public Policy Institute in Washington, D.C.
In addition, many of these caregivers are women. Some are even sandwich caregivers, meaning they not only care for their children, but are also simultaneously caring for their parents or other elderly relatives. Although men also provide care, women clock in more hours.
“As women age they are the ones who need the most help of all. One thing that women have to do is put themselves first in terms of making sure they stay healthy,” says Stanton. “Because a lot of women just give and give until they’re burned out.”
Women not only provide more care, they also statistically live longer, meaning that they’ll ultimately need more care for themselves, which is why Stanton says it’s important to plan ahead.
But for Jody Mishan, it was a “no-brainer” decision to become a caregiver for her father when he developed Alzheimer’s disease. That meant, however, sacrificing her career as a TV writer and producer and her freedom and assets, over eight years.
“[My father] couldn’t do anything on his own,” says Mishan, adding that caring for him physically and mentally changed her. “I just completely transformed; I’m not the person I was 10 years ago.”
Despite her sacrifice, if she had it to do over again, Mishan would make the same choice, but wishes that others would understand and appreciate the contributions that caregivers in Hawai‘i make.
“Caregivers are doing very important work and they’re helping the state save a lot of money,” she says. “Despite all these details of how hard it is every day, care giving makes your heart grow.”
Stanton and Mishan advise women who are caregivers to know when to take a step back and care for themselves, physically and mentally. For Mishan that meant meditating and joining a caregiver support group.
In the future, Reinhard hopes that Hawai‘i can expand the definition of ‘ohana caregivers by implementing a state-funded “cash and counseling” program. The program would distribute cash allowances to disabled individuals, as well as information about available community and home-care services. The individual would be able to pay either a professional or their loved ones to care for them. States such as Oregon have used the program successfully. It allows the individual to receive the care they want, and in their own home, while their family caregiver can also get paid, replacing the income they might otherwise have to sacrifice.