Efforts are underway to improve the resources available, but there are currently few options for people in need of significant care.
Felizia Malacas spent her working years in the heat and red dirt picking pineapples on Lanai’s Dole plantation. In retirement, she lived alone but was not lonely. She doted on grandchildren and tended a garden of purple orchids, fragrant gardenia, mountain apple, cacti and vegetables essential to Filipino cooking.
When a bout of pneumonia landed her in a Honolulu hospital at age 83, doctors discovered a cancerous lump in her breast. By 2018 she was wheelchair-bound, requiring around-the-clock care.
Malacas did not want to leave the Lanai City plantation house she had called home for a half-century. But the island had few resources to help her stay.
Roughly 31% of Lanai’s 3,000 residents are over the age of 60. Yet there is no nursing home or assisted living facility. No adult day care program. Few hospice beds. And there’s a shortage of in-home caregivers for people who can no longer live independently.
It’s heartbreaking to see seniors move to Honolulu or Maui because their family can’t take care of them anymore, but it’s something that happens frequently, said Robin Kaye, a longtime Lanai resident and community activist who said he worries about his own prospects for aging on the 140-square-mile island off the leeward coast of Maui.
“Aging in place on Lanai is a really, really big concern,” said Jared Medeiros, associate medical director at Lanai Community Health Center and a member of an advocacy group that’s pushing to build a care home on the island. “For the elderly it sometimes comes down to that choice of ‘Is this a viable place for me to continue living?’ Patients have to ask themselves that question when they get older and they need more care.”
People unwilling to leave cobble together what resources they can — often at an incredible sacrifice to family members who put their own lives on hold to fill in the gaps.
For Malacas, spending her final years at home was possible only with the help of her daughter Jozy Malacas-Kinoshita, who moved in with her mother to care for her. The stress and exhaustion Malacas-Kinoshita experienced as a full-time caregiver was relentless, almost leading her to relapse back into an old drug habit.
“I almost lost it at one point because it was so overwhelming and so hard,” Malacas-Kinoshita said. “I would have hired more help but on Lanai there’s no more help to hire.”
Neglected health care infrastructure is a problem in many rural communities, but the issue is further complicated by Lanai’s island geography. Limited transportation options to small, sparsely populated islands like Lanai and Molokai make off-island medical travel difficult and impede the ability to import outside help.
Lanai has a 23-unit senior community called Hale Kupuna O Lanai. But it does not offer any medical care or daily living assistance.
The island’s only option for people with serious medical needs who want to stay on the island but can no longer be cared for at home is Lanai Community Hospital’s 10-bed long-term care unit, a prohibitively costly option for people whose care isn’t covered by Medicaid or private long-term care insurance.
Even for people who can afford it, a bed might not be available. While Lanai residents are given priority, open beds sometimes go to people from Maui to help boost occupancy. This can lead to fewer opportunities down the road for Lanai residents to get into the unit. Currently there’s one open bed.
Hospice care, usually delivered at home, is available for those with a terminal diagnosis and a prognosis of six months or less to live. But this doesn’t address the long years of complications from heart disease, Parkinson’s, dementia or cancer that sometimes precede the end of life.
As a result, many Lanai residents rely heavily on family members for caretaking needs, including sometimes complex at-home medical treatments.
Valerie Janikowski runs Lanai Kinaole, the island’s only home health care agency.
A nurse who’s married to a doctor at Lanai Community Hospital, Janikowski started the nonprofit in 2019 after the dissolution of a similar service threatened to leave island families with no home medical help at all.
Two other agencies offer in-home services like house cleaning or bathing assistance. But one has just a single employee. The other, based on Molokai, flies workers to Lanai as needed. Neither offers the kind of skilled nursing care — wound healing, IV medication delivery, blood draws, medication management — provided by Lanai Kinaole.
For two years, Janikowski was the agency’s only nurse. She said she worked without pay, a sacrifice to help ensure the success of a service so badly needed.
Today the stretched-thin agency has more nurses, but Janikowski is the only one working full time. One nurse has a full-time job at the hospital and pitches in at the agency one day a week. Another devotes a few hours a week to the agency when she’s not busy working as a full-time athletic trainer. There’s a nurse on the payroll who works a day or two every other month.
Workforce recruitment is so difficult that one of the agency’s employees is a recent high school graduate. Another is a college student studying to be a psychiatrist who picks up shifts on school breaks.
“I recently was at a patient’s house until 2 a.m. when she was dying,” said Janikowski, adding that she volunteered to provide palliative care to the patient into the early morning hours. “When I know there’s going to be an end in sight, we put in that extra effort to get people the care they need.”
But in most cases Lanai Kinaole can offer patients skilled nursing care for a maximum of a couple of hours up to three times a week. That’s the most relief that the agency could provide to Malacas-Kinoshita.
“I relied on Valerie as my guardian angel to tell me what I should do,” Malacas-Kinoshita said. “Mom was very ill — high blood pressure, heart, eyes, everything was shutting down. But it only gave me two hours of relief to run home and take care of things there and then I’m right back with Mom. It really ran me down to the ground.”
Malacas-Kinoshita put her marriage and her business on hold to move into her mother’s Lanai City home as a full-time caregiver in 2018. No other family member could commit to taking time off from their jobs or child-rearing to help her, although several tried to provide as much back-up care as they could.
While she doesn’t regret the sacrifices she made to care for her mother until her death at age 87 in June 2020, Malacas-Kinoshita said putting her mother’s needs before her own nearly broke up her marriage and led her to check into a drug treatment facility on Maui to avoid a substance abuse relapse.
“Caretaking someone that sick, it’s too much for one person to handle,” Malacas-Kinoshita said. “After taking care of somebody all day, it’s important to rejuvenate. But for me there wasn’t really opportunity for a break.”
To stretch the agency’s capacity and provide more relief, Janikowski said she intends to open the island’s first adult day care program, allowing many aging residents to gather and receive care in one place while also benefiting from activities and socialization.
A day program won’t meet everyone’s needs. But Janikowski said it’s a more attainable vision than opening something more comprehensive, such as a retirement home.
Another effort to address the island’s needs is being led by a small cohort of health care providers and concerned residents who want to convert Lanai Hongwanji Mission’s old minister’s residence into a four-bed adult residential care home.
After losing several aging members who’ve had to move off-island to access better elder care, the Buddhist temple’s board of directors voted this year to grant the group permission to renovate its underutilized residential wing. The 98-year-old temple has not had a resident minister since 1985.
The plan is reinforced by a needs assessment prepared by the University of Hawaii’s Department of Urban and Regional Planning that recommends establishing a new facility on Lanai to meet the growing need for short- and long-term elder care.
The group’s next step is coming up with a business plan that answers questions about how such a facility would be built and operated. Would it be a nonprofit or for-profit facility? Who’s going to run it? What’s the plan for coming up with the funding required to build it?
In the meantime, when families are clearly in over their heads, Janikowski sometimes tries to convince them that they’re doing the wrong thing by trying to allow their loved one to age at home without sufficient care. Often these difficult conversations come to a head when she suggests that the patient leave Lanai for better resources on Maui, Oahu, even the mainland.
“There’s often a lot of resistance and sometimes it’s financial,” Janikowski said. “Sometimes, if it’s a husband and wife or a parent and child, it’s because they don’t want to be an airplane ride away from each other. But when it becomes an unsafe environment because a client requires a heavy amount of care and the caretaker is needing more support than what’s available on this island, often the option is to leave.”
When his wife Betty suffered a debilitating stroke in 2016, Glenn Masuno devoted himself to helping her bathe, dress, sit up, lie down and eat.
The only respite he’s had in the six years since is the 10 days he spent in a Honolulu hospital after suffering a heart attack in 2021.
Lanai Kinaole sends a couple of home health aides to the Masuno’s Lanai City home for two hours twice a week to bathe Betty and get her out of the house for a drive about town or a trip to the beach. But the agency doesn’t have the capacity to do more.
And Masuno, 73, said he’s not sure how much more help he could finance.
“I spend those two hours in exhaustion,” Masuno said. “I think I need to have another heart attack so I can go to the hospital and rest. Don’t take me too seriously on that, but this has been the hardest thing I’ve ever done in my life.”
Would Masuno consider leaving Lanai for better access to care for his wife?
“That would be difficult for me to do,” he said. “We’re both on a fixed income. Although we purchased this house, I still have a mortgage on it. And I love it here. Betty loves it here. I just need to take care of her, whatever it takes.”
Civil Beat’s community health coverage is supported by the Atherton Family Foundation, Swayne Family Fund of Hawaii Community Foundation, the Cooke Foundation and Papa Ola Lokahi.
Civil Beat’s coverage of Maui County is supported in part by a grant from the Nuestro Futuro Foundation.
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