OAKLAND — Rather than place their mother, who suffers from Alzheimer’s disease, into an institution, two Oakland siblings have made helping family into the family business.
When E.J. Fabian and his sister, Julie Benecke, found themselves unable to care for their aging mother in her Belgrade home, they decided to start their own 10-bed Alzheimer’s care facility, a move a state advocate called a unique solution to a growing need for elder care in Maine.
Benecke and Fabian are among tens of thousands of Maine residents directly affected by Alzheimer’s disease, a form of dementia in which dying or malfunctioning brain cells change someone’s memory, behavior and ability to think clearly.
Their mother, Martha Fabian, 74, who they call Gram, is one of 25,000 Maine seniors who suffer from Alzheimer’s, according to a 2013 report from the Alzheimer’s Association, a national advocacy group.
Because Maine’s population is one of the oldest in the nation, more of its residents die from the fatal disease. The rate of death in the state is 37.8 people per 100,000, one of the highest rates in the country and far above the national average of 27 deaths per 100,000, according to the report.
Caring for those with Alzheimer’s is a large burden for families and taxpayers alike.
In Maine, 68,000 people, mostly family members like the Fabians, spent 77 million hours, valued at $951 million, providing care to Alzheimer’s sufferers in 2012, according to the report.
Long before deciding to open their own facility, Benecke, Fabian and other family members began devoting their own time keeping Gram, then just 60, out of a facility.
Fabian noticed that his mother began repeating questions in conversations. The frequency of his mother’s repetitive questions became a barometer of her illness, he said.
During a period of years, the illness progressed to the point that she sometimes asked the same question a dozen times within a half hour.
When it became clear that Gram no longer could live on her own safely, Benecke and her husband took her into their home, an arrangement that lasted for three years.
In 2012, Benecke said, it got to the point that they could no longer care for her safely.
When Benecke went with Fabian to take Gram to an assisted-living facility, she called it the worst day of Beneke’s life.
The drama that unfolded in the Fabian family is not unusual, said Brenda Gallant, the state’s Long-Term Care Ombudsman.
“There are Maine families out there that are very dedicated and devoted to taking care of their families, and some of them are making valiant efforts to keep them in their home,” she said.
Keeping families together is more difficult, Gallant said, because funding for in-home and adult day-care services for those facing cognitive impairment, including Alzheimer’s, is inadequate.
Without a robust range of support services available to them, more seniors are forced to leave their homes for residential care more quickly, Gallant said.
The problem is that the residential care industry in Maine isn’t able to handle the current demand.
“Throughout the state, there are waiting lists for residential care,” she said. “These waiting lists have been ongoing and have been a reality in the state over a number of years.”
Unless something changes, the gap between the demand and services will grow as the number of people with Alzheimer’s increases. Between now and 2025, just 12 years from now, the national population of affected people is expected to increase from 5 million to 7 million.
Direct health care costs associated with Alzheimer’s will also rise, according to the report, which is bad news for taxpayers, who foot most of the bill through Medicare and Medicaid. The current annual cost, $203 billion, averages out to $644 for every man, woman and child in the country.
Neither Gram nor the rest of the Fabian family felt good about leaving her at the assisted-living facility. Their stress only got worse duriing the next few weeks, during which Gram fell twice, prompting two visits to the hospital.
“It just wasn’t a good match for her,” Fabian said.
It was during the aftermath of the second fall, while at the hospital, that Benecke and Fabian came up with the idea that would give their mother the care she needed without separating her from the family she loved.
Six months later, on March 20, Fabian and Benecke officially opened Bedside Manor, a state-licensed residential care facility dedicated to Alzheimer’s and dementia.
While the problem is common, Gallant said, the solution is almost unheard of.
“It’s such a unique case,” she said. “I think it’s kind of commendable.”
Bedside Manor is licensed for 10 beds, but the current resident population is just two, including Gram. It has 14 employees, some of whom are per diem, and at least two staff members are on duty at all times, creating a staff-to-patient ratio that Gallant said compares favorably with the state average.
The building looks clean and comfortable, with amenities such as a recreation room and a hair salon. However, it also has what Benecke calls “a small feel, a homey feel,” with common rooms and bedrooms decorated in a country-home style.
The facility is a family affair.
“Our brothers, husbands and wives, sons and daughters, nieces and nephews and family friends all contributed in some capacity,” Fabian said.
Family members have donated their time to gut and rebuild the interior of the building, formerly a foster home. They also have helped with the interior decorating and construction of a tall wooden fence that encloses a garden, a modest walking path and a gazebo.
A niece, who is also a registered nurse, is on the staff; and a family friend comes in to provide live music on a piano in the recreational room.
“Our family’s very close,” Julie Benecke said.
From a financial perspective, the enterprise is a leap of faith. Fabian said they need to fill the other eight slots in order to make the business work.
It was a leap they were comfortable making, Benecke said.
“This is what anybody would do for their parents, if they could.”
Matt Hongoltz-Hetling — 861-9287