Isle caregivers relate financial, health pain in calling on state for aid

Steve Mitchell was on the brink of collapse from the exhaustion of running a business while taking care of both his ailing wife and mother.

His weight ballooned to 300 pounds because he neglected his own health. “Lucky I no make (die) — then who would take care of them?” Mitchell asked at a rally at the state Capitol on Tuesday.

He turned to professional help at a cost of $11,000 a month for both women. “A care home saved my life,” he shared with the crowd.

But to pay for it, he had to not only sell off a family home on Maui, but also his business — which meant laying off employees.

Having some financial aid would have allowed him to get some respite before having to turn to a care home, and that’s why Mitchell is urging state lawmakers to pass the proposed kupuna caregivers assistance bill.

Mitchell was among several people sharing heart-rending testimonies at the rally in support of companion bills in the House and Senate (SB 534/HB 607). The gathering was organized by Faith Action for Community Equity (FACE), AARP and other groups in partnership with the national nonprofit Caring Across Generations.

Face Communications Director Dawn Morais Webster said the measure would give caregivers who also hold jobs a $70-a-day voucher to help keep them in the workforce.

“Recent polling indicates that 1 in 3 people in the age group of 45 to 70 currently helps care for an aging loved one or a family member over 60 years of age,” Webster said. It would enable more seniors to live with dignity at home, as most prefer, according to studies.

“I hope legislators understand my story is not unique,” Mitchell said. “Under duress, with no respite, I made poor decisions that negatively affected many lives.” In laying off 15 employees from his three cellphone stores on Maui around 2009, it “stopped a business cash flow that provided tens of thousands of dollars in excise taxes, employment taxes and income taxes to the state,” he added.

“As caregivers we push ourselves through love and devotion. We neglect our own needs as we sell our assets and our parents’ assets; we put our health on the back burner; and we sometimes take on unconscionable levels of debts,” Mitchell said. His wife suffered from Alzheimer’s disease, and she and his mother died a few years ago.

Darlene Rodrigues of Mililani said she has been taking care of her mother, 86, who has Alzheimer’s.

“During these past nine years, we have spent the little savings we have hiring caregivers and paying for adult day care (at $70 a day). I can only take part-time jobs since she needs around-the-clock care,” said Rodrigues, who receives some help from her brother and is reluctant to apply for welfare.

“We have had to put off caring for the house — we just can’t afford things like fixing the roof or other basic maintenance needs,” she added. “I am still paying off my student loans. If she falls again or has another health emergency requiring care outside of a hospital, how will we be able to pay for it?

“My mental and physical health have suffered. I have given up my financial stability to go on this caregiving marathon. I have given up gainful employment, my ability to save for retirement and paying into Social Security to care for my sweet, dear mother. … Perhaps what saddens me the most is that I am getting a clear message that society doesn’t value caregivers,” she said, wiping away tears.

Speaking in support of the bills were Sen. Brickwood Galuteria and Rep. Gregg Takayama, who introduced HB 607. Takayama is co-convener of the Kupuna Caucus, a coalition of legislators, government agencies and community organizations working on behalf of seniors.

According to a Caring Across Generations fact sheet, Medicare does not cover hiring a home care aide or respite care.

Kupuna caregivers assistance would be administered by the Executive Office on Aging, under the state Department of Health, and paid for through existing revenues in the general fund.

Caregivers who are employed 30 or more hours a week would be eligible for assistance if they are caring for Hawaii residents 60 years and older.