A Home that Keeps You Home
Before Herbert “Bud” Barker died in 2011, at the age of 89, he was many things. He was a motorcycle scout in the Second World War, where he earned three Purple Hearts and served as a personal driver to George S. Patton; he was the Chief of Police for the northeast division of Conrail, where he was a leader in integrating women and minorities into the department; he was a guest on The Ed Sullivan Show after earning the American Red Cross National Hero’s award for pulling a woman from a burning car moments before it exploded; but at the very end of his life, Barker was a patient at Partnerships Center for Adult Day Care in Hamden, Conn., suffering from frontal lobe dementia.
Every weekday morning of the final years of his life, Barker stepped aboard a bus that stopped just outside his bright yellow house. When his dementia started to progress rapidly, Barker moved into this house at the request of his daughter, on the sole condition that she would paint it this color: he needed to be sure that if he went for a walk in the neighborhood, he would remember which house was his.
On the bus, Barker would sit among other men and women his age, some with Parkinson’s, some with Alzheimer’s, and many, like him, dealing with dementia. The bus would turn off of Dixwell Avenue and continue through a yellow arch reading “Hamden Business Park” before stopping in front of a squat, boxy building, where for the next eight hours Barker and the other patients would be fed, administered medication, bathed, entertained, and cared for.
As Barker and the other patients approached the entrance to Partnerships, Valerie “Val” DellaRocco, the Director, would turn her eye toward the mirror strategically placed to let her see the entrance from her office. She would watch as one of her assistants held the door open for the caravan of canes and walkers. When she saw Barker, she’d smile: he was her favorite.
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It’s now been seven years since Barker died, and DellaRocco is still in that office, still watching the mirror each morning as her patients step off the bus.
DellaRocco is a compact woman, small but energetic, like a stack of tightly wound electrical coils. A row of neat, auburn bangs covers her forehead. When she’s telling a story, she leans in at the moment of highest drama and speaks softly, as though she is sharing gossip in the back of a high school classroom. On the wall of her office hangs a framed quote, attributed to herself, which reads, “I once thought I was wrong…but…I was mistaken.”
DellaRocco has been working at Partnerships for the past 27 years and serving as Director for the past 19, but she has always cared for those most in need. By the time she was 19 years old, she was a Registered Nurse (RN) with an Associate’s Degree from Quinnipiac. She began working at Gaylord Hospital soon after graduation, where she conducted rehab for paraplegics, quadriplegics, and amputees. After eight years at Gaylord, DellaRocco left only to take care on another monumental task as the mother of three daughters born in the space of four years.
Once her daughters were school-aged, DellaRocco wanted to go back to work. She scanned through local newspapers, and stopped at a small ad seeking a part-time RN. The job seemed perfect, and she could start her workday right after dropping the girls off at school and finish right before she had to pick them up. She only had one question: “What the hell is adult day care?” It’s a question that few who work outside of elderly care, or are elderly themselves, would be able to answer.
Adult day care, as a service, lies somewhere between a senior community center and an assisted living facility. It’s a solution for seniors who want to stay in their homes, but need a certain level of medical attention each day — someone to count their pills correctly, or check them for signs of worsening conditions. The patients at Partnerships might not need constant supervision, but at this stage of life, daily check-ins can be crucial. DellaRocco remembers one instance when a patient who lived alone “came off the bus, and she had had a stroke during the night, and no one knew. She got on the bus, but her face was drooping.” DellaRocco immediately recognized the signs and sprang to action.
Most of DellaRocco’s patients, however, have someone to take care of them when they’re not at day care, often children or spouses. For these primary caregivers, adult day care helps them just as much as it helps the patients themselves. Dr. Paul Kirwin, Associate Professor of Geriatric Psychiatry at the Yale School of Medicine, emphasizes the stress placed on families. “These needs are enormous and challenging,” he stresses. “What do you do with an aging parent who’s starting to develop either physical or mental health or cognitive functions, and you are running your own life with a spouse and children, and you’re then having to take care of this older person as well?” DellaRocco’s answer? Bring them to Partnerships.
Adult day care allows families to work full-time without feeling guilty about neglecting their sick parent or spouse. And in terms of cost, there is simply no comparison. Partnerships charges $71 a day, a price that DellaRocco says is cheaper than comparable day care centers, and much cheaper than alternatives. “When you think about $71 a day — it costs twice that for an RN to go into your home for 20 minutes.” The other options, nursing homes and assisted living facilities, run upwards of $300, and patients only receive a fraction of the attention, typically running on a schedule of 20 minute bed-checks. During a day at Partnerships, patients are constantly engaged, and never out of sight of DellaRocco or her nursing assistants.
Adult day care programs also allow patients to stay in their homes. Growing old and sick means losing one form of independence after another. As conditions worsen, the elderly might lose their ability to drive a car, make their own legal and financial decisions, or cook for themselves. Often, staying in their own homes is the last vestige of their independence; moving into a nursing home means a final painful goodbye to autonomy. DellaRocco illustrates this by talking about another of her former favorite patients, who died in 2008. Gaston Schmir, GRD ’58, had been a researcher at the National Institutes of Health and a Professor of Molecular, Cellular, and Developmental Biology at Yale before coming to Partnerships as a Parkinson’s patient. He was also a Holocaust survivor: when he was 11 years old, Schmir fled to Switzerland from Nazi-occupied France with his sister by climbing over a barbed wire fence.
In the hours when Schmir wasn’t at Partnerships, his wife served as his caretaker. Once, when she was recovering from surgery and unable to take care of him, Schmir had to be moved into Cheshire House, a nursing home in Waterbury. DellaRocco remembers that Schmir’s wife called her after he had spent two weeks in Cheshire House. “She said ‘Val, it’s horrible there. He needs to get out of there. He misses you so much.’” DellaRocco arranged for a livery car to bring Schmir to Partnerships during the day. When he returned to Partnerships, Schmir could only explain his feelings by drawing a comparison to his flight into Switzerland, decades earlier. “That first day he came in, he told me — -and it made me cry — -he said he felt like he was going over the barbed wire… and he said, ‘I climbed over the barbed wire again. And I got out.’ Because to him, that nursing home was like prison.”
Geriatric care is a field that recognizes its own limitations; more often than not, the end goal is to ensure that things don’t get worse. “From a clinical perspective,” says Dr. Richard Marottolli, the Medical Director of the Dorothy Adler Geriatric Assessment Center at Yale–New Haven Hospital, “you have to be able to accept the fact that you can’t cure things often. Usually it’s dealing with chronic illness or issues that tend to be persistent. But you can still make improvements in a variety of different things. You can still help people, and it’s still quite rewarding.”
From DellaRocco’s perspective, these considerations leave her with one concrete answer. “Our goal is to keep people out of a nursing home.” And that means as long as possible, to the very end. “If someone dies during the time that they are with us, that’s a success: we’ve kept them at home.”
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At 10:30 a.m., the patients are in the main room, evenly scattered among the tables. A nursing assistant turns on the TV and puts on a karaoke program, an activity they do every morning at this time for half an hour. A man in a green sweater named Tom accepts the microphone and begins crooning “Can’t Take My Eyes Off of You” by Frankie Valli. DellaRocco leans over and whispers to me that Tom was formerly the Sports Writer for the Record Journal in Meriden, Conn.. Jodie, the woman sitting next to him, is picking at a donut served on a small plastic plate when she starts to hum along under Tom’s booming baritone voice. She was a professional singer and music teacher before coming to Partnerships. Both Jodie and Tom suffer from advanced stage frontal lobe dementia. The song ends, and “Blueberry Hill” starts playing from the speakers as DellaRocco leads me into another room. “Someone with advanced dementia,” she says, “might not know their spouse’s name, they might not know their children’s names, but they know the lyrics to an old song.”
DellaRocco prides herself on never turning anyone away, either for their inability to pay, or the severity of their condition. She listed off the names of her current patients as they sang karaoke. Almost every other name was followed by, “No one else would take them.” That included Dennis, a former architect whose frontal lobe dementia has progressed to the point where during karaoke, he sits apart in a designated quiet room to avoid irritation, or Mark, who has autism and is the only one who still drives himself to the Center. Schmir ended up at Partnerships because the fall risk associated with his Parkinson’s made every other adult day care turn him away.
DellaRocco says some of her patients had been treated at other centers before, but were thrown out as their conditions worsened. “They discharge because they need two people to assist to the toilet in the bathroom. Are you kidding me?” There’s a particular cruelty in professionals refusing to lift part of the burden of care from the shoulders of the amateurs. “These families are doing it at home, okay? Most of the time if it’s an older person, their spouse is in their 80s; they’re transferring them to the toilet, they’re getting them out of bed, and you’re going to say we can’t admit you because you’re too much care? That pisses me off.”
The open door policy at Partnerships keeps a lot of patients out of nursing homes, the only places that would accept them if turned away elsewhere; but in recent years, it’s also kept the Center’s finances trending toward the red. When the economy crashed in the 2008, adult day care centers in Connecticut began losing patients. “We had a lot of people getting laid off from their jobs, so they would stay home and take care of their parent, instead of sending them to day care, because they weren’t working.” DellaRocco further explains that of the patients who stayed, many started requesting to reduce their service plans down to half-days: “We also saw a lot of people say, ‘We can’t afford a whole day. But we can afford four hours,’ which would give them four hours to do their errands, maybe to just get some sleep! Do their own appointments, whatever.”
During the recession, most other adult day care centers ended their half-day packages because too many clients were switching down, while the cost of overhead remained roughly the same. Partnerships has kept their policy. DellaRocco, with a solemn voice, says, “The past couple of years, we have really begun to struggle. We are struggling now to the point where our future is really in question, because of the fact that we continue to take people for a half-day.”
On top of the economic woes of the center, DellaRocco, who has seen hundreds walk through her doors seeking a refuge for the end of life, has made the heart-wrenching decision to retire. She turned 65 this year, making her older than some of her patients and old enough to qualify for Medicare. But so far her decision is only formal; the search for a replacement has thus far been fruitless. The demands of the position are boundless — the patience and empathy required alone eliminates most contenders — and each day that the threat of closing the center lurches closer to reality, the more impossible the hunt becomes. DellaRocco leans in and lowers her voice, forming each word in quiet distress, “What nurse is going to take a position, where I hope we’re open for a few more months? I hope we stay open!”
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Partnerships is not alone in its struggle. In the past decade, the number of adult day care centers in Connecticut has shrunk from 67 down to 50. Failing assisted living facilities have routinely been swallowed up by massive corporations and rebranded, only to see their doors close months later. And this period of financial turmoil comes at a time when it has never been more important for places like Partnerships to stay open.
For one thing, the elderly population is growing, and fast. Joanne McGloin is the Associate Director of the Yale Program on Aging, a research initiative based in the School of Medicine. She says the demographic shift we’re experiencing now is unprecedented. “I mean, we’re looking at a time when 20 percent of the population will be considered elderly, and that’s never happened before.” On top of the huge advances in medical technology that allow for longer lifespans, the Baby Boomer generation is celebrating birthdays beyond 65 in droves. “On the one hand, it’s a wonderful accomplishment that many people are able to live that long, but it brings a lot of challenges.”
First among those challenges is money, and how there isn’t nearly enough of it. For one thing, there has been a complete plateau in governmental assistance for the elderly. “Our public funding and public policy initiatives haven’t kept pace with an aging demographic,” Dr. Kirwin remarks. For most populations in need of significant aid, when government money comes up short, non-profits usually step in to try to make up the difference. This isn’t the case for the elderly. Most charities naturally tend towards the issues related to the beginning of life, not the end of it. DellaRocco says, “The focus of a lot of grants and potential funding really has to do with youth and education — the elderly population seems to get lost in that.” In an age fascinated with making altruism as effective as possible, the elderly constantly end up on the losing side of a calculation that measures impact in terms of years of human life. And those raising objections to this disparity seem to be only those who work directly with the elderly. McGloin shares Kirwin and DellaRocco’s views: “I think when we try to work toward a just society there are a lot of needs that need to be balanced — you know, the needs of children, the needs of working families — but we can’t forget older people as well, we just have to find ways to make life better for everybody.”
And so there are more elderly people, fewer places to treat them, and an overall stagnation in the rise of governmental and charitable aid. But another massive shift in the state of elderly populations forces the comparison to a perfect storm: “The other trend,” DellaRocco says, “which probably started around 10 years ago, is the increasing diagnoses of early onset Alzheimer’s and frontal lobe dementia, Parkinson’s type dementia. So we are getting younger and younger people. My youngest right now is in his 50s.” DellaRocco has a couple possible explanations for the trend. The oldest generation, when they were younger, had “better foods, a less toxic environment. The stuff that we are experiencing now, not only environmental pollution, but also in the foods that we’re eating — It’s different. It’s very different.” She also cites recent studies that have linked emotional trauma with early onset dementia, a connection she’s seen in her own experience. Regardless of the cause, the trend has serious ramifications for families: they get no help from the state, as most benefits for the elderly start at age 65. And while most of the primary caregivers for DellaRocco’s patients used to be their adult children or retired spouses, now some of her patients have spouses working full time to pay for children just starting college.
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In her 27 years at Partnerships, DellaRocco has known hundreds of patients. She’s attended countless funerals, and provided peace of mind for families seeking quality care for their loved ones. “These families are my family,” she says. Earlier this year, when DellaRocco called a meeting to discuss the Center’s dire financial situation, every family showed up. Every face read concern for the future.
She’s been in their position, too. A few years ago, DellaRocco watched her most difficult patient walk through the entrance of Partnerships: her own father. At first, she struggled to see herself in the role of both caretaker and daughter. “After dealing with this for so many years, and then having it hit home…was tough.” But after two weeks, a change came over her. “Then it hit me — how lucky am I to have my dad coming with me, spending the day with me,” she recounts, “and he made it to 91. I had him here for two years that I got to spend with him.” DellaRocco felt the comfort of knowing her father was in the best place he could be. He wasn’t in a nursing home or an assisted living facility — he was with his daughter and living at home. It was a comfort that DellaRocco has given to every family who has trusted her with the care of their mother, father, husband, or wife. And for as long as Partnerships stays open — whether a month, a year, or a century — anyone, regardless of their condition or ability to pay, will feel this same comfort.
