'Fragmented' system overwhelms families
By Rob Perez
Advertiser Staff Writer
Clarence Agena knew the path he had to take.
Having worked with a volunteer caregiver support group, the retired Army man knew that his wife's chances of getting into an O'ahu nursing home would increase substantially if she were in a hospital. He had heard the oft-repeated statement that the majority of nursing-home admissions typically are transfers from hospitals.
Agena tried the other route anyway. As his wife's dementia began to worsen, he called several nursing homes on his own, hoping to get lucky. But each time, the Kunia resident got the same response: We're full. We have a wait list.
So when Chong Ye Agena developed a severe infection in the summer of 2007, her husband was able to get her admitted at Hawai'i Medical Center in 'Ewa.
Once there, Agena convinced the doctor that his wife, now 60, needed to rehab at a nursing home. A few days later she was transferred to Ka Punawai Ola in Kapolei and has been there ever since.
"I knew the path to a nursing home was a hospital," said Agena, 65. "Sometimes you have to be an advocate for yourself and the person you're caring for."
In one sense, Agena was fortunate. Unlike the vast majority of Hawai'i residents, he already knew a lot about the long-term-care system before his wife actually needed it. He was prepared when the time came.
Most people aren't. When a medical crisis arises, they quickly discover that the path to long-term care is littered with obstacles and practically requires a degree in medical speak to navigate.
It's a maze that even professionals acknowledge is convoluted and difficult to sort through.
"I've worked with Hawai'i's long-term-care system the past 20 years, and even I get confused," said John McDermott, the state's long-term-care ombudsman. "Finding the right facility for a loved one who can no longer live independently can be frustrating and emotionally draining. The good news is we are blessed with many options. But that also means more work for the consumer to find that perfect fit where the resident is cared for, loved and treated with dignity."
For distressed families looking for a place for a loved one for the first time — and usually under pressure to make a quick decision — the process can be overwhelming.
"Some people are at wit's end, crying when they call," said Lei R. Shimizu, a city Elderly Affairs Division coordinator who oversees its senior help line. "They almost sound like they're having a nervous breakdown."
Despite such anxieties, there's actually plenty of basic help available for families to begin to familiarize themselves with the long-term-care system and the types of options available.
What's the difference between an adult foster home and care home? Between skilled nursing care and intermediate care? What is covered by Medicare?
Those are among the questions families typically will have to sort through.
To help, the counties each have an aging office — Honolulu's is Elderly Affairs — that provides free information and education materials. In addition, Shimizu and her staff, on a case-by-case basis, will do in-home visits and provide help to walk-in clients, particularly if more in-depth intervention is needed.
Beyond that, however, families have to do the bulk of the legwork, including visiting facilities to get a sense of whether the environments and staffs are appropriate for their loved ones.
"A lot of times, the feeling you get about a place is most important," said Patty Griffiths, geriatric care manager for Options for Elders, a care management company.
The legwork the families must do — if they want to be thorough — is not inconsequential.
"It's a full-time job, in essence," Alicia Swanson said, recalling her efforts in 2008 to find a suitable place for her 86-year-old father. "It's very challenging. It's very draining."
Swanson, an investor relations consultant, has flexible hours because of her job and because she works from home. With that flexibility, she was able to spend a lot of time during the day researching options for her father, making phone calls and visiting facilities.
Her research got a boost through her husband's job benefits. She was able to have Options for Elders do an assessment of her father and provide information about alternatives.
But even with that help, Swanson said she spent hours checking out the possibilities, something she suspects might be beyond the reach of many two-income couples. "If you're both working full time, how do you even manage that?" she asked.
If the family is considering a nursing home — assuming they find one with a vacancy, not an easy task given Hawai'i's shortage of beds — plenty of information is available online to gauge quality of care and other important information.
But if the search focuses on noninstitutional, neighborhood facilities, such as a foster or care home, there's virtually no quality-of-care information readily available to consumers. Getting inspection results from the state, for instance, can take days, if not weeks. That presents a big problem if the family is under pressure to make a quick decision, as is often the case when a loved one is being discharged from the hospital.
The stress of deciding where to put a loved one only adds to the anxiety of dealing with a hospitalization. It's not an ideal time to make a decision with so much at stake and so little time to choose. Often, a hospital will give only a day or two notice before a patient is discharged.
"When you're in a crisis, that's the worst time to make decisions like this," said Debbie Kim Morikawa, director of the city's Department of Community Services.
The process can be so difficult and confusing that local businesses have formed specifically to help families overcome the obstacles.
Ho'okele Personal Health Planners, run by former hospital people, is one such firm.
"We just saw all the holes in the system," said Bonnie Castonguay, a Ho'okele partner and registered nurse. "We connect the dots for (our clients)."
Annette Mente, who several times since 2004 has helped her parents get nursing-home care, knows first-hand the difficulty of navigating Hawai'i's system.
Mente's first experience came in 2004 when her father, Yasuo Mente, then 83, was hit by a car while riding his bike. He was hospitalized for more than three months, then moved to a nursing home through arrangements made by the hospital.
Mente's father went in and out of nursing homes several more times before he finally moved back home in 2005. He died in 2008.
Mente's mother, Toshiko, spent more than a month rehabilitating at a nursing home in 2006 after a week-plus hospitalization because of a stroke. Mente didn't get much advance notice for her mother's hospital discharge, but because of the experience of helping her father, "we were ready for it."
Still, the process can be unnerving, she said, echoing what other families told The Advertiser.
"You often don't get much input or warning to the (discharge) decision, and the warning you're given does not prepare you for what happens next, which is a rapid discharge to the first available nursing facility," she wrote in an e-mail. "You're given a list of facilities often, but there is usually very little time to do adequate research."
Adding to the difficulties, Mente said, is a lack of cohesion in linking all the different elements of Hawai'i's long-term-care network.
"The system is so fragmented, it's amazing it works as well as it does," Mente said.
That's why families that have gone through the process recommend that people engaging the system for the first time be strong advocates for their loved ones before and after an appropriate care facility is found.
Agena believes his wife wouldn't have gotten into a nursing home if he had not resisted the hospital's initial attempt to discharge her so she could return to their Kunia residence.
Given the level of care she needed, "there was no way I could take her home," Agena said.
Nearly three years later, Agena said he is pleased with his wife's situation at the Kapolei nursing home. At least once a month, he takes her on outings, usually to Pearlridge Center, where he pushes her in her wheelchair throughout the mall. They usually eat lunch together before the Handi-Van returns to take her back to Kapolei.
Swanson said her father also is doing well, but he took a more circuitous route through the long-term-care system.
His first stay was at an expanded care home. The caregivers there had the best of intentions, but the staff was too small to give residents enough attention, and the caregivers were too quick to resort to medication to deal with patient problems, Swanson said.
"He just didn't do well in that environment," she said.
Swanson subsequently decided that a foster home, where no more than three clients can live, was the best option because of the personal attention he would get in a noninstitutional setting. But even foster homes can vary in quality and approach.
The first one her father tried for about six weeks, but that didn't work out. "The match just wasn't there," she said.
Then Swanson got a recommendation for a Wahiawā home run by Alma Acasio. Her father took to the home from the get-go.
"Angels were working for him," Swanson said. "We found Alma."