In the past three years, 67-year-old Angeline Cordeiro has been in nine different residential care homes for seniors. None of them, according to her family, could handle the challenges of providing care to someone who is both physically frail and mentally ill.
Cordeiro’s daughter, Roberta Taei, said each placement has ended the same way: The care home’s operators drop her mother off at a hospital for some ailment and then won’t take her back.
That happened for the ninth time in early March, she said.
Cordeiro, who uses a wheelchair and suffers from schizoaffective bipolar disorder, is now awaiting another placement. Her care is government-funded, so Taei said she has little say over where her mother ends up.
"When her psychosis acts up, when she starts to refuse to take her medicine, she ends up back in the hospital," said Taei, of Wahiawa. "It’s just overwhelming."
While Cordeiro’s case may be extreme, mental health advocates say the family is not alone in struggling to find proper care for an older loved one with a mental illness.
There are few residential care homes in the islands that are equipped to serve seniors with severe mental health problems, advocates and state officials said, and beds in facilities with higher levels of care are hard to come by.
The state has taken small steps to tackle the situation by improving training for care home operators and expanding access, but officials acknowledge more work needs to be done.
"We really do need to take a look at this," said Wes Lum, director of the state Executive Office on Aging. "We (the state) haven’t really done much yet."
Hawaii is facing a long-term care crisis for its graying population as a whole, and the subset of baby boomers with severe mental health problems is poised to present additional needs as they age, advocates say.
"It’s definitely a serious problem," said Marya Grambs, executive director of Mental Health America of Hawaii. "Some of them need to be in nursing homes, but nursing homes are not typically equipped to deal with mental illness."
Complicating the picture: Severe mental health problems take a toll on physical health, so mentally ill people may need to enter long-term care earlier than their peers, said state Adult Mental Health Division Chief Mark Fridovich.
A 55-year-old with a severe, persistent mental illness "may present with physical health needs comparable to someone who is 70 or 80," he said.
Fridovich added that people with severe mental health needs also are less likely to have a family support network, which means they are probably navigating the system on their own.
"Our state doesn’t have enough long-term care in general," he said. "Our client cohort is aging, too, and … like all of us are going to need more support."
It’s tough to determine the scope of the problem, however, and it’s important to note that those with mental illnesses make up a small minority of all those in residential care homes.
Thelma Ortal, president of the Adult Foster Homecare Association of Hawaii, said she hasn’t heard any complaints from care home operators struggling to serve people with mental illnesses.
Still, Fridovich estimates that about one-third of the roughly 6,000 people who receive continuing case management or other services from AMHD are 55 or over, which indicates if the issue is not drawing concern from care home operators now it might in the near future. Eligibility for AMHD services is restricted to low-income people with psychoses.
Cordeiro, Taei’s mother, does not receive services from AMHD, but from Medicaid.
Taei said her mother has never been able to live independently, but was living at home up until about six years ago, when her husband died.
At first, Taei and her sister tried to care for their mother.
When Taei took her mother in, she set her up in the living room because all the bedrooms were upstairs. Since there was no bathroom on the first floor, Taei had to keep a portable commode in the living room and set up a shower area in her laundry room.
Quickly, though, Taei realized she could not take care of her mother alone.
Cordeiro sometimes wasn’t able to get to the commode in time, so Taei sometimes arrived home to find feces on the floor.
Her mother would also verbally threaten her and "cause trouble" in the household.
When Taei sought care home placement for her mother, she wasn’t told that her mother’s mental illness would be an issue.
It quickly became one.
Taei said she has received up to 10 calls a day from her mother’s care home operators telling her that her mother is refusing to eat or take her medication.
Last year, her mother’s care home operators dropped her mother off at a hospital, but didn’t inform her. Cordeiro was discharged with a bus pass, Taei said, and ended up on the Waianae Coast, where she used to live.
Taei said her mother was homeless in a park bathroom in Maili for about a month before she was able to locate her.
During that homeless stint, Taei said, her mother developed skin sores that turned into open wounds and got infected.
Interviewed at Wahiawa General Hospital earlier this month, where she is getting treatment for the infection, Cordeiro said she is tired of moving from home to home.
"I need help," she said, as her daughter stood by her bed.
June Jones, of Waialua, also is struggling to find the right placement for her 66-year-old mother, who has paranoid schizophrenia, dementia and limited mobility.
Jones’ mother has been in Hawaii for five years —and has been in as many residential care homes.
Her most recent placement, less than two months ago, was in a care home in Kalihi.
Jones said her mother’s health has declined over the past five years, and she’s worried. So she’s moving her mother to Florida, where other relatives live, and plans to place her in care there.
Jones said her mother receives Medicare and Medicaid, and she has been unsuccessful in trying to get her mother into a facility that provides a higher level of care.
"I’m so angry about her treatment," said Jones. "The system has just failed. The people who are running these care homes have good intentions, but are not necessarily trained to care for people with mental illnesses."
Jones added that while she loves her mother, she "is not easy to deal with."
"She’ll tell you delusional things. She cries. She’s not an easy or pleasant person to be around," Jones said.
While there is no comprehensive effort to determine how to provide more long-term care options for senior citizens with severe mental illnesses, the state is taking small steps to address the problem.
Six years ago, AMHD launched an "enhanced residential care home" project to serve seniors coming out of Hawaii State Hospital, the only state-run psychiatric hospital in the islands.
There are 36 such five-bed care homes statewide. At any one time, only three people coming out of the state hospital can be housed at the care homes.
Stacy Haitsuka, AMHD utilization management specialist, who is overseeing the Expanded-Adult Residential Care Home program, said the division is currently only placing seniors from Hawaii State Hospital in the specialized care homes. Other AMHD clients are not being placed in them. (Almost all of the patients at the hospital are forensic admissions, which means they were ordered there by the courts after an arrest.)
AMHD offers annual, voluntary training to E-ARCH care home operators on how to take care of people with severe and persistent mental illnesses, and Haitsuka said operators’ biggest concerns about serving the population often revolve around potential violence and whether mentally ill clients will get along with other seniors in a home.
For the first time this year, the state opened up that training — planned for May — to all care home operators, and Haitsuka said a number of caregivers from regular care homes have signed up to participate.
Among those who plan to attend is Johnny Fiesta, who has operated a five-bed care home in Kalihi since 1991. He said he has one client with a mental illness, and the experience has been trying.
He had one other client with a mental illness, but that person was moved to a higher level of care after deteriorating physically.
"Sometimes, they’re not listening to me. They’re combative, yelling to the roommate, hearing voices," he said. He said he hopes the training offers him "some more experience."
In addition to offering more help to care home operators, the state has plans to develop a long-term care facility on the Hawaii State Hospital campus.
The proposed skilled-nursing facility would have as many as 200 beds, 50 of which would be reserved for former Hawaii State Hospital patients.
But don’t expect to see the facility anytime soon.
Permitting for the project, which would include no out-of-pocket building costs to the state, is going on now, and there’s no start date for construction.