When Tyler Yusko's father, Jeff, left a rehabilitation center in New Jersey earlier this year, the younger Mr. Yusko thought a case manager would hook them up with nursing care back home on the East End.
It turned out to be more complicated than that.
"The case manager gives you pamphlets and direction, but 70 percent falls on you to do that homework," he said. "And you're in a state of crisis."
The Yuskos needed round-the-clock care for Jeff, 63, who suffered a traumatic brain injury in a bike accident in May 2023. He was wearing a helmet and using the bike lane when a van hit him from behind.
What Tyler Yusko found so confounding was the lack of a centralized place — such as a website — to get accurate information about home care on the East End. As a result, he said, "Google is your best friend." He spent hours doing research on the phone and the internet and has even thought about starting his own website to help others in the same position.
When it comes to at-home care on the East End, those who need help are finding it, well, hard to find. Factors like long driving distances to reach clients and a perceived lack of competitive wages for aides make the home nursing field challenging to navigate from both perspectives.
Tyler Yusko's main task was to find an agency that could supply a team of nurses to care for his dad at the family's home in Wainscott. While searching he ran into a common problem: health care workers are reluctant to drive out east from farther west, where most live, particularly in the summer when traffic is gridlocked.
He came close to success with an agency in Riverhead, but one of the nurses on the proposed team of four said she wouldn't do the drive. He had to start over. He finally found nurses through an agency in Manhattan. Each of them — two registered nurses and two licensed practical nurses — lives on Long Island, an hour or so from Wainscott. He says the family now feels like it has a stable team in place and is grateful for the care their dad receives. He needs a feeding tube and still can't communicate, 18 months after his accident.
Mr. Yusko's mom, Kelly, teaches at the Wainscott School and has health insurance that covers her husband's nursing care. But Tyler Yusko, who is 33 and works in tech sales, says he had to use all his negotiation skills to ensure that remains the case.
"I know how to push, to be persistent," he said. But when dealing with the medical field, "if you're not persistent or don't have a strong backbone . . . you won't get anything done."
He can't imagine being an 80-something spouse having to search for care.
That's the position Nancy Andrews of East Hampton found herself in when her husband, Lee Andrews, left the Westhampton Care Center earlier this year. In the last several years Mr. Andrews has had operations on his neck, hips, and back. But what really felled him was catching the R.S.V. virus last December. He spent a combined three months in the hospital and in rehab. By the time he came home, Mr. Andrews had lost 30 pounds. He and Mrs. Andrews are both 89.
Mr. Andrews was very weak and while he didn't need a nurse who provides advanced medical care, he did need help with daily activities, from dressing to showering to getting around.
Mrs. Andrews says she got lucky. Through her doctor, Ralph Gibson, she was referred to a family of caregivers, headed by Melissa Browne, a certified nursing assistant who had cared for Dr. Gibson's mother.
"It's a big change for me having people living with us, but this family, they're lovely people," said Mrs. Andrews.
Ms. Browne spends much of the week with the couple. In addition to helping Mr. Andrews, she prepares the couple's breakfast and lunch, while Mrs. Andrews cooks dinner. "She loves to do the dinner and I think he loves that, too," said Ms. Browne.
When she goes home to Manorville for a break, she's replaced at various times by her mother, her sister, her daughter, or her son. Originally from Trinidad, she has been caring for older people for 25 years. Like Mrs. Andrews, Ms. Browne says she is happy with the situation, describing the Andrews family as "the most loving, kind people I ever met."
Just as the quality of home health aides varies from the employer's perspective, so does the quality of the employer from the aide's point of view.
"Since I'm Black, you have some white people, and they discriminate," says Ms. Browne. "I never got that from Nancy and Lee. They show me the same compassion they show everyone." But in some past situations, she said, her employers barely spoke to her.
Mr. and Mrs. Andrews pay Ms. Browne and her family $40 an hour. This brings up an important point. Aides like Ms. Browne are independent, but many others work for agencies and are paid by the agency, not the individual employer. They receive a cut of the agency's hourly fee.
Several agencies on or near the East End did not return calls or emails from a reporter researching pay rates.
One, Shene Nursing, formerly based on Newtown Lane in East Hampton, appears to have gone out of business but is still listed in a state database of care providers.
Another, Baylin Home Care, an agency in Southampton, told The Star its hourly rate is $35.95 for an aide in East Hampton and $39.50 for an aide in Montauk.
Many people looking for help are like Nancy Andrews — they find aides or nurses through word of mouth. Harriet Cohen, a private-care manager based in Southampton, advises families to hire through an agency like Baylin that is licensed by New York State. Some agencies in the area operate without a license. Licensed agencies are insured, she said, "so if that person falls in the house or if that person steals from you . . . you have some recourse." If one aide doesn't work out, they can usually send another.
Ms. Cohen is a longtime social worker who has worked for two hospital systems on the East End. "I know a lot of the doctors; I've sat through so much discharge planning and I understand a lot of the medical jargon," she said. In short, she navigates the system so the client doesn't have to.
Her clients are often adult children or other family members who live far away. "I'm hired a lot of times to put caregivers in place . . . and I'm hired to visit, so someone pays attention to their mother," she said.
Many older adults are aging alone out here. Ms. Cohen says she would not advise a relative to "hire an aide and assume the aide is in charge," as there are many things that could go wrong.
But a lot can go right. Nancy Andrews says her aide, Ms. Browne, helps her as much as she helps her husband.
She admits that she sometimes gets depressed because she misses the life they used to live. They were hikers and sailors for decades.
"I never realized how much adjustment it would take to grow old. Nor did I imagine these kinds of difficulties," she said, speaking of her husband's health issues. "That was very naive of me. I thought we'd just coast along." But, she added, "It doesn't happen."
Still, she's grateful that they can afford the help they need, now that they need it, and she doesn't dwell on the negative.
"We've lived a long life and a wonderful life," Mrs. Andrews said. "So I can't complain."
WHERE TO TURN FOR HELP
Experts recommend consulting New York State's official list of licensed and insured at-home health care companies when seeking this type of care. Here are a few regional options, as listed in the State Health Department's database of Suffolk County agencies. The county's Office for the Aging can also be contacted for more information at 631-853-8200.
EAST QUOGUE
Recco Home Care Services
472 Montauk Highway
East Quogue, N.Y. 11942
631-653-5500
reccohomecare.com
GREENPORT
Peconic Landing Home Health
1500 Brecknock Road
Greenport, N.Y. 11944
631-477-2146
peconiclanding.org
Shelter Island (SI) Homecare Agency/ABR Homecare of NY, Inc.
74365 Main Street
Greenport, N.Y. 11944
631-333-2077
sihomecare.com
HAMPTON BAYS
Home Instead Senior Care
148 East Montauk Highway, Suite 2
Hampton Bays, N.Y. 11946
631-594-3470
homeinstead.com
MANORVILLE
Bethesda Elite Care
3 Surrey Lane
Manorville, N.Y. 11949
631-503-7209
bethesdaelitecare.com
PATCHOGUE
Nannies for Grannies and Grandads Too
34 Sunset Lane
Patchogue, N.Y. 11772
631-730-8500
nannysforgrannys.com
RIVERHEAD
Comfort Keepers
31 Main Road, Suite 9
Riverhead, N.Y. 11901
631-369-6080
comfortkeepers.com