Advice from those who know on supporting Long Island caregivers

Mary Hubschmitt, 74, of Mastic Beach, had a high blood pressure scare.

Francine Federman-Sherman, 72, of Hauppauge, gained 50 pounds.

Nadjamy Jean-Claude, 45, of Middle Island, walked out of her house, checked into a hotel and didn’t come home for two days.

All three women were reacting to the impact of being long-term caregivers for their loved ones. Hubschmitt’s husband has been battling lung disease for 10 years and needs her help with all medical appointments. Federman-Sherman said she was unprepared for how rapidly her husband’s early onset Alzheimer’s progressed over four years. And for six years Jean-Claude said she has been juggling working full time and caring for her mother, who has dementia and lives with her, her husband and three sons.

They all said they remember the moment they realized the only ones they weren’t taking care of were themselves — and that they needed help.

This pressure on caregivers is a growing problem nationwide. According to the 2025 “Family Caregiver Annual Report and Statistics” by SeniorLiving.org, an online resource for seniors and caregivers, about 53 million U.S. adults are assisting their older relatives, spouses, friends or neighbors with daily tasks like cooking and dressing, transportation and medical or nursing tasks. The study also showed that 59% of family caregivers are women, and they report higher levels of emotional stress, depression and challenges with balancing caregiving duties compared to men who are also caregivers.

That tracks with what those who work with Long Island seniors are finding. “Caregiving here is something that is inevitably affecting all of us who are over 50, whether it’s about our parents, our spouses, our friends or even ourselves,” said Tara Anglim, vice president of culture and experience at the Caregivers Center at Northwell Health-Peconic Bay Medical Center in Riverhead.

Among those needing care are 60,000 people on Long Island who are impacted by some form of dementia, including Alzheimer’s, according to Lauren Vlachos, executive director of the Alzheimer’s Disease Resource Center in East Islip. She said their needs will often eventually progress beyond what a family member is able to give them.

Other families are coping with Parkinson’s disease and a wide range of other health issues that put demands on caregivers emotionally, physically and financially, said Gloria Lebeaux, senior director of social work services at the Barry and Florence Friedberg Jewish Community Center in Oceanside.

As the complexity of care increases, so does the toll on the caregivers, said Susanna Caputi, the Link-Age Program coordinator at Family & Children’s Association in Garden City, which connects seniors to long-term care services in the community. “There’s always caregiver stress, burnout, fatigue and self-neglect; the feeling that ‘I’m not allowed to take care of my needs because I really need to care for my significant other.’ Caregivers tend to experience guilt and shame about even needing time for themselves and embarrassment that they need help.”

A heartbreaking honor

That’s not surprising since most people aren’t prepared to handle it all, said Anglim, “though U.S. health care delivery — whether it’s for a stroke, cancer or any other serious condition — is reliant on the idea that there are family members helping the patient.”

That need doesn’t make family caregiving easy, said Anglim, 54. “Being a family caregiver is a hard job, and it’s a lot of responsibility,” she said. “I’ve been a caregiver. When you love someone, you want to do everything you can to help them. It’s really overwhelming, and we’re not trained for that.”

Caregiving is “a heartbreaking honor,” said Robyn Berger-Gaston, division director of Family Service League Inc. in Riverhead. “Being the caregiver can possibly be the very most difficult experience that you feel honored to be able to do. It’s the job that family members don’t want, but they don’t want anyone else to do it, and that’s kind of an interesting paradox for caregiving. What gets lost in the mix is taking care of yourself.”

Jean-Claude said she certainly felt that way taking care of her 73-year-old mother, Anne Marie Charles, who has been living with dementia and Alzheimer’s since 2017. She said cultural issues — her mother was born in Haiti — added to the expectation that, though she has brothers, as the daughter she needed to be the caregiver.

“In fall 2023 I was at my wit’s end because I was emotionally burned out and I didn’t know how to ask for help,” said Jean-Claude, who works in real estate. “It caught up with me because the body can only take so much. I was juggling all these different hats as a woman and I had an emotional breakdown; just walked out of the home.”

After that she and her family talked about how to make sure that didn’t happen again. She said she reached out to officials at Family & Children’s Association to attend virtual and in-person caregiver support groups, and they helped her find a day program for her mother three days a week.

“I had looked at everything from a negative way, but getting counseling and getting the support helped me to shift my thinking and now I’m even looking at being able to create new memories with my mom,” she said.

Help available

And that support is readily available, said Vlachos, 47. “Even though it all sounds a little bit grim, there are a lot of different nonprofit organizations providing resources to caregivers,” she said. “And while it could seem overwhelming to try to figure out where all of the resources are, if folks call us, we are happy to connect them to whatever they need.”

For instance, Anglim said, since navigating resources can be time consuming, social workers at the Northwell centers have vetted resource libraries related to their communities, as well as monthly hybrid education workshops and support groups.

Hubschmitt said she took advantage of their services. Eight years into their 18-year marriage, the second for both her and her husband, Raymond, he was diagnosed with lung cancer. Raymond, 80, has needed her help ever since to keep track of medical appointments. One year he had 100 of them, so she carries a notebook to every appointment to stay on top of all his medical issues. Hubschmitt, a former school administrator who retired at 70 to care for Raymond, said when her blood pressure spiked during one of those appointments, she knew she needed to do something for herself. She joined the caregivers group at Peconic Bay Medical Center in Riverhead and attends workshops in person and on Zoom.

“It’s brought joy and pleasure knowing there is a group for other people who are going through this as well,” she said. “That you can go in and say, I’m feeling this way. Is anybody else feeling this way? And then to know other women are feeling the same. Now my advice to others is, ‘Please take care of yourself.’ ”

A focus on self-care

Prioritizing self-care also took a while for Federman-Sherman, whose husband of over 30 years, Glenn Sherman, was diagnosed with early-onset Alzheimer’s in 2021. By New Year’s 2022, “when he really was falling apart and becoming incontinent, I knew I needed help for me.”

She contacted Family Service League for one-on-one counseling and a Zoom spouse support group. She said they even helped her find a day care center for her husband, as she was still working full time as an administrator at Farmingdale State College. When he had to move to a facility, she said she joined a related support group offered by the Alzheimer’s Disease Resource Center. When he passed away in February, Federman-Sherman continued to attend her support groups.

“I needed them all. Everybody needs a way to cope. My way of coping was eating,” said Federman-Sherman, who has since lost 40 pounds. “You need a support system. You need to come to terms with no matter what you do, you can’t change what is going to happen. Don’t get yourself sick because you love them, and it’s ripping you up.”

Lebeaux, 67, of the Friedberg JCC, advised that caregivers understand they don’t have to go it alone. “There are places they can go, where they can feel heard, safe and accepted, and that talking to others is not depressing,” she said. “It’s a place to learn to problem-solve together, to share resources and to get some strength.”