Geoffrey Levy says life is difficult for him and his wife, Martha. He fears it’s about to get worse.
Nothing’s been the same since she was diagnosed with multiple sclerosis in 1988. By 2001 she had to quit her job. Geoffrey has been her primary caregiver from day one and the breadwinner for years. But in a couple of months he will lose his job and health insurance when the lens-repair company where he works as a technician closes.
Caregiving can come with a heavy financial cost along with the emotional toll, and it’s not like the Levys — like other struggling families — have much to fall back on. Martha’s medications cost at least $5,000 to $6,000 a year, Geoffrey says.
“We had to pay about $4,000 for her first portable scooter because insurance wouldn’t cover it. We had to fight with the insurance company so she could get a replacement after 15 years. The expenses add up. Our life savings and investments have been eaten away,” says Geoffrey, 62, who lives in Brentwood.
The Levys haven’t had the luxury of hiring an aide to relieve him. While he works, Martha, 60, is alone. It helps that his job is 15 minutes from home and he can get there quickly. “Her parents are dead, most of my family is in Florida and hers are spread out across the country. We have to make it the best we can. We’re the two musketeers,” he says.
They are not alone in their fight to survive.
In an AARP-commissioned 2014 survey of voters on Long Island 50 and older, 53 percent of those with family caregiving experience reported that the impact was either overwhelming or placed a good deal of strain on their quality of life, including financial hardship, emotional stress and stress at work.
And according to Northwestern Mutual’s CARE (Costs, Accountabilities, Realities, Expectations) study last year, nearly four in 10 Americans consider themselves caregivers to someone aging, ill or with special needs (other than a child), or say they have performed this role in the past.
“The cost of being a caregiver is roughly $5,500 a year, and if you’re doing it long-distance, it’s closer to $9,000,” says Beth Finkel, the Manhattan-based state director for AARP in New York. “The average caregiver loses over $300,000, conservatively in wages, pension and Social Security benefits as a result of caregiving responsibilities.”
Matthew Probert, 57, of South Farmingdale, quit his job as an elevator service salesperson 11 years ago to take care of his 90-year-old mother, who has Alzheimer’s. He took care of her himself the first few years and then he discovered Catholic Charities, which helped him find an aide for four hours a day, five days a week. His brother comes from Pennsylvania twice a month on Saturday afternoons and leaves early Sunday morning to give Probert a break.
They’ve settled into a routine. He gets her up, washed, dressed, into her wheelchair and fed. He washes dishes, straightens up, fixes lunch, puts her down for a nap, gets her up, makes dinner, does therapy with her stretching her arms and legs, changes her, and by 11 p.m. she’s in bed. He wakes at 3 a.m. to move her and to see if she’s wet.
The family has no income outside of his mom’s Social Security and her small IRA. They have a tiny allotment of food stamps. “We’re on a tight rope,” Probert says. And social service agencies “make you jump hoops to get services.”
He meditates daily to relieve stress. “When the aide comes I’ll do bills or try to rest,” he says. “Sometimes I run out and catch a matinee.”
Barbara Marion Horn believes in “honoring thy mother.” She quit her job and moved in with her 95-year-old mother in Long Beach more than 10 years ago. Horn, 65, gets Social Security and does odd jobs.
“I find ways to stretch things,” she says. “My mother took care of her mother, her mother-in-law and my two aunts; it’s her turn,” says Horn.
Before her mother got Medicaid in 2013, Horn says she was spending about $8,000 a year on aides alone. While caregiving has been a challenge financially, she says the emotional toll has been devastating. “Sometimes I allow myself to cry,” says Horn, who was so burnt out from lack of sleep that she temporarily placed her mother in a nursing home. “I just had to sleep for a few months. I’m coming back to myself. I’m going to get her out of there.”
For some, money isn’t the issue. They have long-term care insurance for expenses, Medicare and supplemental health insurance, or maybe there was a nest egg. But that doesn’t solve the heartbreak.
Jill Eddy, 66, of Oceanside, cares for her 91-year-old mother, Belle, who has Alzheimer’s. “It’s like having a toddler. We have to be right there,” says Jill, who sleeps in the room with her mother because she doesn’t want her to be alone, ever. It’s not the retirement she and husband Ray imagined. “It’s hard for us to have time together.”
Geoffrey Levy’s not sure what’s next for the two musketeers. A doctor has prescribed medication so he’s not tired all the time, he tinkers around the house fixing things for emotional relief, and every now and again the car lover and history buff will DJ music for vintage car shows.
“You can’t change the situation,” he says. “Don’t fight it. Find a creative outlet.”
TIPS TO EASE THE BURDEN
At a time when things can seem hopeless, there is help.
- Don’t go it alone. “You’ll lose some friends because they feel so bad for you. Find support groups,” says Roseann Keiles, a long-term-care specialist in Northport.
- Wally Patawaran, program officer for the John A. Hartford Foundation, a private philanthropy in Manhattan dedicated to improving the care of older adults, says it’s essential that caregivers work with a team of professionals — doctors, nurses, social workers, and others — who have expertise in aging and who can coordinate care and direct caregivers to resources in the community.
- Tap all resources. Matthew Probert says the Northwell Health system’s House Calls program (516-876-4100) has been a lifesaver. “Every one to two months a doctor or nurse practitioner comes to do a checkup on my mom. You can call 24/7 for advice.”
- Barbara Horn found invaluable the 24/7 Hotline for the National Alzheimer’s Association: 800-272-3900. “This number and the social workers, therapists and trained staff that are on the other end have saved my sanity and helped me with my mom at various hours of the day and mostly night!”
- She also lauds the Alzheimer’s disease Resource Center: 631- 580-5100. “These are local folks who run monthly support groups, educational forums, a weekly telephone support group and just show the love. There is personal attention from a fantastic team of skilled, compassionate dementia specialists.”
- Look for help with your unexpected costs. Christine Adoni, senior manager of Ceridian LifeWorks in Philadelphia, suggests checking with local area agencies on aging, which can assist with subsidized services based on financial need. “Long-term-care insurance is also worth exploring. It can help ease the burden of the high cost of nursing home care.”
- A good place to start. Vistit a New York State website that lists resources for caregivers, aging.ny.gov/Caregivers/Index.cfm. Also try the AARP Caregiving Resource Center, which provides an easy way to join an online community of caregivers and learn about local services, at aarp.com.
- Educate yourself. Explore potential tax deductions. “Caregivers may be able to claim their loved one as a dependent, to claim medical expenses for their loved one ranging from bathroom modifications and TV adapters for those with hearing impairments, to the cost of hired care and wigs for those who had treatment resulting in hair loss,” says Beth Finkel. Caregivers may be able to use pretax flexible spending accounts to pay for medical costs for their loved one. Sometimes caregivers are able to get paid for their work.