Part I: Mimi
Her father’s stroke came as a shock to Mimi Galusha. So did what came next.
“Life as I know it was totally changed,” she said.
For years, Galusha’s dad had taken care of her mother, who has Parkinson’s disease. Galusha helped out, too. But she had her own job, as a school paraprofessional, and her own household, with a husband and two preteen daughters.
Then, 18 months ago, came the stroke. Galusha’s once-active father, Donato DiMatteo, lost the use of his left side, leaving him unable to drive or handle most of the household tasks he’d long done on his own.
And Galusha became responsible for taking care of both her parents. It was like going from having two kids to four, she said, from one household to two.
In the mornings, she’d drive to her parents’ house to give them breakfast and start her mother’s medication regimen. Then she’d go home to get her kids ready for school, and go back and forth between the two Wethersfield houses through the day.
She later hired aides to help, paying close to $10,000 a month with her parents’ savings and draining most of her own 401(k).
Eventually, her parents were accepted into a state program that covers the cost of aides. But Galusha remains a critical part of their care. She visits every morning, handles their grocery shopping, takes them to medical appointments and fills in if an aide calls in sick. She gave up her job last year after she had trouble getting time off when her mother needed surgery.
It’s still overwhelming, always being available in case they need her, or if her father has a bad day as he struggles to adjust to losing his independence.
“But you know, hey, they’re my parents,” Galusha said. “They would’ve done the same thing for me.”
Part II: A Growing Need
Galusha is one of an estimated 42 million Americans who act as unpaid caregivers, forming what experts call the backbone of the long-term care system. They far outnumber the home care workforce, providing services that one report estimated would cost $450 billion if performed by paid workers.
In Connecticut, 486,000 people — more than one in eight state residents — were providing care to an adult with limitations in his or her activities at any given point in 2009, according to the report by AARP Public Policy Institute.
The experiences of those caregivers vary widely. Some, like Galusha, care for people in their homes and have to stop working or cut back their hours. Others continue to care for relatives living in nursing homes. For some, caregiving comes with little or no support, at a cost to their own health and financial well-being. Many don’t even identify themselves as caregivers, describing the accommodations they make for an ill or disabled loved one as part of being a family or a friend.
One thing is clear: The need for them is growing.
Connecticut’s population aged 65 and over is expected to grow by 64 percent by 2030, while the working age population is projected to decline by 2 percent.
Gov. Dannel P. Malloy’s administration is working to dramatically expand the availability of home care as an alternative to nursing homes, with expectations that the demand for home- and community-based services will grow by about 32,000 people in the next 15 years.
Policymakers say ensuring the availability of home care workers will be a key challenge in meeting the demand. But having more people with care needs living at home will almost certainly also mean a heavier reliance on the people who provide care by choice or out of a sense of obligation.
And it comes at a time when demographic trends make the availability of unpaid caregivers less certain. There are now more single adults without children, and more people living to ages when dementia is common, requiring round-the-clock care, noted Susan C. Reinhard, senior vice president for public policy at AARP.
“The real difference here is that we have fewer family members, and as we go into the future, that’s going to be even more so,” she said.
Meanwhile, research suggests that Americans have fewer social ties, meaning potentially smaller networks of people available to help out when needed.
Dawn Lambert, who is leading the state’s effort to expand the availability of home care as project director for the Money Follows the Person demonstration program, said she’s observed an increase in the number of family members who want to care for their relatives at home, a change she attributes in part to a greater awareness of the availability of supports. These include programs that pay for home care for people who meet financial and functional requirements, and respite programs that give caregivers a break.
“The best thing that we can do in supporting families is to give them enough support so that the relationship that they have, whether it’s the husband to the wife who has Alzheimer’s or the daughter to the mother or father, that they can still be the daughter, and they can still be the husband, and not a full-time caregiver,” Lambert said.
“We don’t want family members to burn out,” she added.
Part III: Arlenne
Arlenne O’Brien wheeled her mother back to her room, brightly lit by the 4 o’clock sun. She tried briefly to wake her, but her mother, Graciela Avila, was deep in sleep, as she usually is after getting her hair done. O’Brien turned on the television and made sure it was on TV Land. It carries the shows her mom, who’s 83, used to watch.
Later, as she walked through Bridgeport’s Northbridge Health Care Center, O’Brien greeted the other residents in the hallway. One handed her a paper cup to throw away. She checked in with the certified nursing assistant who would be tending to her mother that night.
O’Brien visits her mother every day after work and stays through the staff shift change to find out who will be assigned to her mom that night. She makes sure her mother’s face is clean, her teeth are in, lays out her pajamas and chooses an outfit for her mother to wear the next day. It’s not that O’Brien doesn’t trust the nursing home workers; she praises them. She knows they would pick out the clothing if she didn’t, but she likes to make sure everything matches, down to the socks.
O’Brien has become such a mainstay of the nursing home that at least one new staffer thought she worked there. Her sister, Yvonne Merced, comes at night to check on their mother again.
“This is my mother,” O’Brien said. “How would you like it if your mother or you were in a nursing home and nobody combed your hair? Or your face is all dirty? Would you like that for your own family? No, you want to make sure they’re clean.”
Besides, O’Brien is used to caring for her mother. For four years, after their father died and their mother was diagnosed with dementia, O’Brien and her sister cobbled together home care for their mom, doing it themselves when they weren’t at work and scrambling to find aides for the other times.
But Avila’s needs grew. When she started burning her lunch, they got rid of her pots. Her hygiene deteriorated. O’Brien visited every day after work. She worried.
Avila was born in Cuba but spoke English and worked for three decades as an inspector in a factory. When the dementia set in, though, “She forgot how to speak English,” O’Brien said.
That added another complication: They needed to find aides who spoke Spanish. Medicare covered the cost, but didn’t allow as many hours as they thought she needed, and then suggested cutting them back. Avila fired several she didn’t like. A friend of O’Brien’s would sit with Avila when O’Brien worked nights and her sister was busy. They paid an aide out-of-pocket on weekends if they were both working or otherwise busy.
“I never wanted to put her in a nursing home,” O’Brien recalled.
But then her mother started falling. At times, emergency workers had to help because the aide couldn’t lift her. Sometimes, O’Brien left work to come help.
When Avila fell and required stitches on her head, and Medicare was limiting the hours of care it would cover, O’Brien was convinced about what her mom needed: A nursing home.
Her mother was not.
“She said, ‘No, I don’t want to do it, but yet, I don’t want to be home alone. I want you there with me,’” O’Brien said. “I said, ‘I can’t, I work.’”
The hardest part, she said, was leaving her mother at Northbridge the first day.
There was another challenge, too: Trying to find the resources available for help, especially from the state, and the paperwork required to ensure that her mother’s nursing home care would be covered by Medicaid. “We don’t think about those things when we’re younger,” she said.
It’s been six years since Avila moved into the nursing home. She has stopped walking since then, and two years ago, stopped talking. O’Brien says her mother can still recognize her and her sister.
They do their mother’s laundry at their homes, even though the nursing home would do it. Years ago, their mom would have the hairdresser come to her home every Friday; O’Brien and Merced make sure she gets it done in the nursing home every other week. She used to like to watch people walk by outside and gossip, so when the weather is warm, O’Brien takes her outside.
“I’m still stressed, but not as much because she’s here,” O’Brien said. “But it’s still every day, every day. And I can’t talk to her anymore.”
Part IV: Asking for help
Advocacy groups like AARP lobby for policies to support caregivers, including respite programs and workplace flexibility akin to what parents of young children might receive.
But one major challenge is somewhat more basic: Getting caregivers to see themselves as caregivers, and to recognize that they can accept help.
Reinhard likens it to the instruction flight attendants give passengers: If the air masks come down, put the oxygen on yourself first before you put it on your children. You can’t help them if you can’t breathe.
“People need permission,” she said.
One way to do that, she said, is for medical professionals to ask patients if they’re taking care of anyone.
“It’s amazing, because it’s so normal now to be a caregiver. It is the new norm,” Reinhard said. “That at least opens the door, ‘How are you and do you know there are resources for you to learn more?’”
Galusha considers the help she gets “a godsend.” The agency Connecticut Community Care Inc., coordinates her parents’ care and provides aides, allowing Galusha time to take her own kids to their activities, tend to her own home or work as a substitute in the schools.
But the responsibilities she has are considerable, in part because, like O’Brien, there’s a language barrier. Her parents grew up speaking Spanish — they know English, but at this point, their native language is easier — and their aides speak Spanish. That leaves Galusha to translate for doctors or physical therapists who come to their house.
“It’s overwhelming sometimes,” she said. “Very overwhelming.”
A couple of years ago, O’Brien went for counseling to deal with stress. But it wasn’t from taking care of her mother. It was after her niece died of ovarian cancer. O’Brien had been taking her to chemotherapy and helping out her niece’s husband.
By that time, it had been eight years since she started caring for her mother, but she never sought help dealing with it. That was just something you do, she said.
“I didn’t think about going for counseling with all this, because I’m like, ‘I’m supposed to be the strong one,’” she said.
Part V: Arnold and Marion
Arnold Francis calls the phone call a wake-up call. It was four years ago. His wife, Marion, left for work in Enfield and ended up driving to their old house in Windsor.
It made him rethink the little things he had been dismissing as the result of his wife being in her 70s.
Marion was diagnosed with Alzheimer’s, and she and Arnold have attended classes on memory loss. He’s attended programs for caregivers. But he doesn’t see himself primarily as a caregiver.
“It’s just something that has to be done, and you do what you have to do, that’s all,” he said. “Got married for better or for worse, you know. That’s part of the deal, too.”
Since the phone call, Marion stopped driving and gave up the part-time job at Stop & Shop she’d held for nearly 30 years. Arnold read up on Alzheimer’s. Marion, 76, began spending time at an adult day program, and Arnold, 77, uses the time to see friends or do work on his heating oil business; he’s scaled it back over the years but keeps a few accounts.
But if you ask him what’s changed since Marion’s diagnosis, he’ll tell you, not much. Maybe some small things.
Marion, who grew up on a farm and likes things clean, boasts that her nickname is “the white tornado,” and admits to being a bit of a fanatic about keeping the house clean. It’s evident in their neat Windsor Locks home. Even if there’s just a small bit of stuff in a bathroom garbage pail, Arnold notes, his wife of 59 years will insist on emptying it. And sometimes since her Alzheimer’s set in, she puts both garbage pails back in one bathroom, instead of one in each.
“It’s a small thing, but that’s what would bug me at first,” Arnold Francis said. He said he’s learned to adjust his attitude, to roll with the punches.
Besides, recently, he’s noticed the garbage pails ended up back in each bathroom.
He knows others have it worse, and that things could get harder for him and his wife. They’ve made financial preparations and taken care of living wills and health care proxies. They’ve visited assisted living facilities to learn their options in the future if they need it, and thought about having people come to the house to help if it becomes necessary. Arnold is glad they purchased long-term care insurance a dozen years ago.
“I know everybody tells me, ‘It’s going to get worse, it’s going to get worse,’” he said. “I say, ‘Well, if it’s going to get worse, OK, we’ll cross that bridge when we come to it.’ But in the meantime, we’re doing everything we can so it doesn’t get worse. I got no guarantees, but right now it’s working well, I’d say.”
“People say, ‘Oh, how do you do it?’ I say, ‘Well, do what?’ I mean, it’s a burden in a way, and in a way it’s part of life,” he said. “If you live to be old enough a lot of people are going to face the same situation. And I think she’s really good about it. She knows she’s got limitations and we work on it together.”
“It’s just part of being married, I guess,” he added. “And life.”