Alzheimer's on Long Island: How family caregivers are making it work

John and Diane Romano, of Kings Park, had planned to retire early, relocate to their beach house in Boca Raton, Florida, and travel the world.

But Alzheimer’s disease turned their retirement plans upside down. Ten years ago, Diane, a former nurse practitioner, was diagnosed with the disease early, at 52. Now, she is in the late stages of the disease and cannot walk or care for herself.

Diane has two paid caregivers, who work on weekdays and Saturdays from 8:30 a.m. to 4 p.m. To fill the gaps, Romano and his daughter, Jamie Romano, 30, a middle school teacher who lives with her parents, tend to her needs each evening and all day on Sundays. Other family members sometimes help, as well. John, who sits on the board of the Long Island chapter of the nonprofit Alzheimer’s Association, said he provides nearly 50 hours of care per week to his wife of nearly 40 years.

“My daughter helps me with cooking and grocery shopping, feeding her, getting her up at night, changing her, brushing her teeth and getting her washed up and ready for bed,” said John, 66. “We all make a lot of decisions in life, but caregiving is the hardest decision.”

Romano is one of the more than 11 million Americans serving as unpaid, part-time or full-time caregivers to a loved one with Alzheimer’s, according to the Long Island chapter of the Alzheimer’s Association. A progressive disease with no cure, Alzheimer’s impairs memory and mental function and affects more than 6.5 million people in the nation.

On Long Island, an estimated 60,000 people aged 65 and older are living with the disease. And, while no number is available for the early-onset form of the disease on Long Island, about 200,000 Americans ages 30 to 64 are affected, according to the Alzheimer’s Association.

While many unpaid caregivers find their roles rewarding and meaningful, they also report high levels of stress and emotional, physical and financial strain. According to the Centers for Disease Control and Prevention, caregivers of people with Alzheimer’s and related dementias are “at greater risk for anxiety, depression and poorer quality of life than caregivers of people with other conditions.”

Out-of-pocket costs not covered by health insurance can also be an economic hardship, along with the inability to find professional caregivers to help.

“The industry of professional home care providers has an extremely high turnover rate of 40 to 50%,” said Douglas Wolf, associate director of the Aging Studies Institute at Syracuse University. “Wages are low, and it’s hard to find these people.”

Complicating matters, many unpaid caregivers are employed and have to split their time between work and care tasks. According to a 2020 AARP survey, six in 10 unpaid caregivers report working while caregiving.

Early stages

Valley Stream resident Mirella Bonilla’s days are full. The meeting and events planner, 56, who commutes to her job in Manhattan, juggles work and care tasks for her husband, Angel, who was diagnosed in 2017 with early-onset Alzheimer’s at age 55.

Bonilla said Angel, now 61, had to retire from his job as a flight attendant in 2019 after supervisors noticed his cognitive abilities were slipping.

Before the mother of two grown children leaves for work every morning, she said, she has to ensure she has left instructions on a number of sticky notes for Angel, reminding him to take his pills and vitamins; to tell the plumber or carpenter when they arrive at the house to phone Mirella so she can explain what requires repair; to not open the door to strangers; and which button on the television remote is on and off.

And when he has a doctor’s appointment, Bonilla said she has to drive her husband, who hung up his car keys for the most part in 2021 after he got lost driving home and needed to call his wife for help.

Angel Bonilla said he regrets that his wife has to spend much of her free time helping him order his day. “I feel bad that she has to do everything while she could be doing something else,” he said. “I’m just always here on the couch.”

While Angel Bonilla is still in the early stages of the disease, Mirella is preparing for her husband’s eventual decline.

“When he was first diagnosed, I immediately took care of everything, we went to an elder care attorney, he recorded how he wants to spend the last months of his life. I read a lot of books on Alzheimer’s,” said Mirella Bonilla, who said she is handling work and caregiving with ease. “I am prepared to a certain degree, and I know it will get hard eventually, but I will cross that bridge when I get there.”

Alzheimer’s plus cancer

Karel Deboer, 72, of East Hampton and Manhattan, said that providing care for his partner of more than 40 years, Bill Vassilios, was also “easy” when he was in the early stages of Alzheimer’s disease.

From the spring of 2020 to the fall of 2021, though, a series of events plunged Deboer’s life into chaos. Not only did the retired real estate manager have to cope with the COVID-19 lockdown, but Vassilios, 88, was declining from the disease. Then Deboer was diagnosed with lung cancer, for which he had to undergo surgery.

Despite all his efforts, Deboer said he could only find help in Manhattan on weekdays from 9 a.m. to 5 p.m. and not at all in East Hampton, where the couple spends weekends. Deboer, who is still managing his own follow-up cancer care, said he had to undertake Vassilios’ personal care, prepare meals, provide his transportation to doctors’ appointments and offer emotional support.

“It [Alzheimer’s] got bad, and I was up to my neck in it,” said Deboer, referring to his caregiving duties. “I was not going to abandon him and put him in a nursing home. . . . I love him. You don’t know how much you are doing until you’re not doing it.”

Making matters worse, Deboer said Vassilios also has sundown syndrome, which can cause confusion, anxiety and aggression in the late afternoon and last into the night in some people with Alzheimer’s. One day, Deboer said Vassilios had wandered into a neighbor’s garden in the early morning; another time, he was found walking a quarter mile from his home. Often in the middle of the night, he will awaken from nightmares “yelling and screaming,” Deboer said.

Feeling abandoned

Since Vassilios’ health has worsened, Deboer said the couple’s social life has evaporated.

“Our friends have abandoned us. I think they either can’t handle this or they fear death. Some call once every couple of months,” he said. “I feel like I’ve been cheated in life, but I don’t let it rule me.”

Experts say that whether one takes on the demands of caregiving willingly or by default, a range of emotions surfaces. Depression, anger over feeling shortchanged in life and ambivalence — of both wanting and not wanting to take care of a loved one — are common.

According to a 2021 study by the CDC, an estimated 70% of unpaid caregivers reported adverse mental health symptoms, including anxiety, depression and passive or serious suicidal thoughts.

“Shorter-term illnesses like cancer are all-consuming, but Alzheimer’s is a longer-term illness, and caregivers may not realize it’s a marathon, not a sprint,” said Donna Benton, associate research professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California in Los Angeles. “Caregivers may not have coping skills and support networks because with long-term caregiving, you need different skills and knowledge.”

Round-the-clock care

Oceanside residents Rosemary Miller, 71, and her husband, Ed, 72, were finally enjoying retirement. Crossed off their bucket list were European destinations and travel to Hawaii and Alaska. But all that stopped when Ed was diagnosed with Alzheimer’s in 2019, his wife said. The disease progressed quickly, and by 2022 he was unable to walk or care for himself, she said.

Since outside help was available to them through the VA Caregiver Support Program (Ed is a Vietnam War veteran) only four hours a day for four days a week, Miller said a majority of the caretaking fell to her and her daughter, Jennifer Avila, 45, an Oceanside mother of two who works full-time in banking. Miller said she also hired an aide privately for $15 per hour a few times to give herself a break.

To transfer her husband, who is 6-foot and weighs 170 pounds, from his bed to a chair, Miller and other family members had to operate a hospital-grade, hydraulic sling lift. Compounding the difficulty were multiple other health issues that frequently sent her husband to the hospital for treatment, she said.

Three months ago, Miller signed the paperwork to admit Ed to the Community Living Center at the Northport Veterans Affairs Medical Center, a nursing home where he could receive round-the-clock care. “We were feeling it was time,” Miller said. “We were doing him a disservice. We were often calling 911.”

Experts recommend that caregivers enroll in Alzheimer’s education programs to help them navigate the challenges of the disease and sign up for support groups to gain a sense of empowerment and control.

“You don’t want to vent to your sister or best friend, but by going to a support group, there are people there who understand what you are going through,” Benton said.

Experts also suggest respite care or short-term relief in the form of adult day care or other services to provide caregivers a much-needed break.

Benton added: “If you can get caregiver balance, then the relationship will be balanced, and you can focus on what you started out to do, which is to provide moments of laughter, love and connection with your loved one and not focus so much on the day-to-day stressful care-related issues.”