In the nearly 60 years that Susan Todino and her husband Bill have been married, the only time they’ve ever lived apart was when he served in the Vietnam War.
But that will soon change. Bill, who is 79, was diagnosed with Alzheimer’s disease six years ago and Todino, also 79, says she no longer has the ability to adequately care for her husband — he’s a big man and needs to be dressed and bathed.
The decision to move him to a facility has been heartbreaking.
“You make these promises to each other, you know — ‘I’ll never put you anywhere, I’ll always take care of you,’” she said, as her voice broke, during a recent meeting of a caregiver support group at the Stoneham Senior Center. “But you get to a point where you can’t do it anymore. And you have to accept that fact, that somebody’s there that can do it better than I can.”
After a long search, Todino got her husband on a waiting list for a memory care unit at the Veterans Home at Chelsea, a state-run residential program for eligible veterans.
In this way, Todino may be fortunate. Her husband is one of tens of thousands of people living with Alzheimer’s in Massachusetts, a number that is expected to rise as more people live longer and the baby boom generation ages.
There are a few hundred memory care facilities across the state, according to state officials. The programs are a form of long-term residential care, with specially trained staff, physical features to prevent wandering and structured activities for people with dementia. Some are in standalone facilities, while others are specialized units within assisted living facilities and nursing homes.
Advocates worry Massachusetts residents and the state are not prepared for the avalanche of increased needs, especially for those needing financial assistance.
“This is a big issue that we have to be prepared for. And in my opinion, and those of us who work in this field know, we’re not ready for it yet,” said Walter Ramos, president of the nonprofit Rogerson Communities, which operates a memory care facility in Jamaica Plain. He says there aren’t a lot of affordable options. “Unfortunately memory care is a blind spot in terms of government assistance.”
Memory care in mind
The Rogerson House opened in 1997, becoming the first facility in the Boston area dedicated exclusively to memory care. Most of the 66 residents pay privately and there are about eight beds for people in the MassHealth Program of All-inclusive Care for the Elderly, which provides health coverage for eligible low- and medium-income residents.
The facility was designed with “memory care in mind” — built in the shape of a rectangle to allow the residents to wander safely. The exit doors are tucked away. In the dining room, the place mats are high-contrast colors since Alzheimer’s can affect sight and depth perception.
“This is a big issue that we have to be prepared for. And in my opinion, and those of us who work in this field know, we’re not ready for it yet.”Walter Ramos, president of Rogerson Communities
The youngest resident is 60, the oldest just turned 106. On a recent morning, two men were working out in the fitness center and singing along to Queen’s “Bohemian Rhapsody.” Like many other memory care services, Rogerson has had to adapt to accommodate younger residents.
“You think about music of the ’20s through the ’50s, and now we’re playing classic rock,” said Michi Boddupalli, the Rogerson House’s executive director. “We just have to offer such a wider variety of programming,”
There are now 35 standalone facilities like Rogerson House that are dedicated to memory care, while 169 more offer such specialized care along with assisted living services, according to the state’s Executive Office of Aging and Independence. There are another 68 dementia special care units in nursing homes, licensed through the state’s Department of Public Health.
But the need is much bigger. There are about 135,000 people in Massachusetts living with Alzheimer’s, the most common cause of dementia, according to the local chapter of the Alzheimer’s Association. And that number is expected to double by 2060, according to a report by the U.S. Centers of Disease Control and Prevention.
Omar Zahraoui, senior principal at the National Investment Center for Seniors Housing & Care, told GBH News that more memory care units are opening across the country to meet the growing demand. That makes them among the fastest-growing types of senior housing, beyond independent or assisted living.
Nationally, supply is nearly keeping up with demand in metropolitan areas compared to a decade ago. But the share of units that are occupied in Massachusetts’ metropolitan areas has crept up over the last decade, starting a squeeze on the state’s demand: 92% of the roughly 5,500 memory care units in the commonwealth are occupied, according to data provided by the National Investment Center for Seniors Housing & Care.
Rogerson officials say they are working to increase the supply, currently planning to build a new affordable facility with memory care in Jamaica Plain to replace the current one.
“As we are living longer and living better lives, there is a point that more of us are going to need this type of care,” said Ramos, president of the nonprofit.
A heartbreaking decision
At a recent meeting of the Stoneham support group, members discussed being at different stages of dealing with dementia. Some said their loved ones are still living at home, others are in a facility, and some people’s family members have passed away — but they continue to attend the group to share their grief.
Whatever their experience, they bond over a shared frustration about the confusing, arduous process of finding placement in facilities in Massachusetts, with an average cost up to $11,000 a month, one of the highest in the country.
After Todino shared her story about her husband, Bob Marcellino of Medford said he knew what she was going through.
Marcellino has been with his husband Bill Durkee for 52 years.
“It’s incredible because — the guilt. I know exactly what you’re saying when you made the vow: sickness and health. Yeah, it’s out the window now,” he said. “I’ve been dealing with this for four years, but the last six months [have] been hell.”
Marcellino was getting ready to take Durkee to a memory care facility in just a few days.
“We got the money, so I’m gonna put him in the best place I can,” Marcellino said.
Kathy-Elise Learned runs the support group through the nonprofit Mystic Valley Elder Services, based in Malden. She helps families find placement when the time comes, and reassures them that the guilt they feel doesn’t mean they’re doing the wrong thing.
“We try to keep people home, but that’s why these memory care units are so important because as people age, the caregivers age, you can only do so much, right?” she said at the support group. “It breaks my heart that your hearts are broken.”
Financing a placement can be the hardest part, unless a resident is able to enroll in programs like MassHealth or use veteran benefits.
“If somebody says to me, ‘I need to place somebody from the community,’ I’m like, ‘Unless you have money — some piles of it — I’m really not gonna get you in,’” Learned said.
Many family members find peace when they finally get a placement.
Barbara Flockhart said her 80-year-old sister Kathy lived with her for two years, and had limited financial resources. But Flockhart said that when Kathy’s condition deteriorated and she was in danger of wandering away from home, she was able to get her on a state program administered by MassHealth and Medicaid. Flockhart moved her into a memory care unit in Chelsea in September.
“She’s doing so much better than she was doing with me. Because they [the staff] know what they’re doing,” Flockhart said. “She’s safe and she’s happy and I’m relieved.”
Todino recently found out that her husband will be able to move into the facility next week, after more than a year of waiting. She’s optimistic that the change will be worth the wait.
“This will hopefully be a happy ending,” Todino said. “Hopefully.”
