Devoted caregivers need care too
Kaplen JCC in Tenafly, MetroWest JCC in West Orange both offer respite
Caregivers responsible for spouses’, parents’ and siblings’ dementia often experience two painful challenges. Not only do they watch their once vibrant, successful, and talented loved ones lose their intellect, identity, and purpose, but throughout the grueling process of providing care, they’re susceptible to losing themselves too.
At the JCC MetroWest in West Orange and the Kaplen JCC on the Palisades in Tenafly, caregivers have an opportunity to bond, commiserate, and buoy each other while their spouses participate in adult day care programming.
“Unfortunately, this disease only goes in one direction,” Sharon Gordon, the chief program officer at the JCC MetroWest, said. “No one is getting better. Clients who come to our center have different levels of memory impairment and different levels of need.”
The JCC MetroWest’s first program, the Jonathan and Nancy Littman Memory Center, was created seven years ago. It’s named after the late Harold Littman and his wife, Annette, and was created with funding from Mr. Littman’s son, Jonathan, and Jonathan’s wife, Nancy, who live in Sherman Oaks, California, and from a grant from the Healthcare Foundation of New Jersey in Millburn.
“The original program was designed for individuals who have mild memory impairment,” Ms. Gordon said. “These clients are capable of being a part of a larger group and can participate in structured activities. They’re also able to sit and focus for a number of hours without getting too tired or distracted. Our newer, expanded program, the Littman Family Memory Center, was created in 2023 for those clients whose impairment might be more severe or who for a variety of reasons, need more staff support or a more person-centered approach.
“The expanded center was made possible with generous donations from the late Harold Littman’s wife, Annette, their four children, and their spouses,” she continued. “About one-third of those in the new program have come from the original program. The rest come from the community. We have found that when clients move from one program to the next, the shift is typically seamless. “Inevitably, those with more severe impairment benefit from a smaller staff-to-client ratio. We see them become more verbal and more involved.”
Ms. Gordon, a trained dementia specialist who has been working at the JCC MetroWest for 25 years, does not run the day-to-day operations, but she is the preliminary contact for people who’d like their loved ones to participate in one or the other memory care program. She writes the grants for funding and relies on her experienced, well-educated, caring staff to support clients in the adult day programs. “The staff in the room is the secret sauce,” she said. “Our capable team works hard to create an environment where our clients in both adult day care programs shine.”
More than seven years ago, when Jonathan Littman asked her why the JCC didn’t offer programming for people who, like his father, were experiencing symptoms of dementia. Ms. Gordon talked to Reuben Rotman, then the executive director of Jewish Family Service of MetroWest. “Reuben asked if I was interested in collaborating on a program to support those in the community who were living at home and experiencing memory impairment,” Ms. Gordon said. “JCC MetroWest had offerings for people of all ages, including the senior community, but there was nothing specifically geared to individuals with memory loss.
“In 2016, I called the Kaplen JCC on the Palisades in Tenafly and spoke with Judi Nahary,” who is now that JCC’s chief program officer but then ran its senior adult, active adult, and special services departments. The Kaplen JCC “had been providing services to people with memory impairment for years,” Ms. Gordon said. “We needed to know a program like this would work for us before putting the time, energy and money toward the concept. In communicating with the staff at JCCOTP, we saw how the model worked.
“They provided resources and calendars and ideas for the types of activities to offer to clients at different levels of impairment. They helped us get started.”
With support from not only Jonathan and Nancy Littman and the Healthcare Foundation of New Jersey, but also from the Sephardic Foundation on Aging in Brooklyn, the Jewish Community Foundation of the Jewish Federation of Greater MetroWest, the JCC MetroWest designed an adult day program that ran from 10 a.m. to 3 p.m. on Mondays, Tuesdays and Thursdays.
“Our goal was to start with six to eight people, but we started with 20,” Ms. Gordon said. “The space was too small to accommodate such a large group, so we went back to the Healthcare Foundation and received a grant to re-engage an existing space that would work. Soon after, we had 30 participants involved in activities that were socially and cognitively stimulating.
Ms. Gordon said that after an initial assessment, clients come to the center for a trial day. “It’s best to see a client in the adult day care environment to see if it’s a good fit,” she said. “If a client is aggressive or tries to leave the premises, then it becomes a safety issue. At that point, we might recommend a more well-equipped setting.
“Memory impairment is not one size fits all,” she continued. “And a client’s needs will change as his or her level of impairment progresses. In general, we measure clients’ success if they leave at the end of the day and they’re happy. We’ve learned that the mood continues beyond the memory.
“When they come back, they may not remember they were here yesterday, but they know it’s a nurturing and loving place.”
In January 2024, a second program — smaller, more person-centered, and in a larger space — was developed to support clients with more advanced memory impairment. “Funding for the new program, the Littman Family Memory Center, went toward renovating existing space, start-up costs, programming support, staff to provide more one-on-one care, and financial assistance for clients and their spouses,” Ms. Gordon said. “It is very expensive to care for someone who cannot be left alone.”
Ms. Gordon looks forward to thanking the donors and foundations who made these programs possible at a celebration at the JCC MetroWest in September.
“Both adult day care programs offer caregivers, aides and spouses an opportunity for respite,” she said. “Caring for a loved one with dementia is a 24/7 job. Caregivers need time for self-care whether it’s going to work, to lunch, to the nail or hair salon, walking through the mall or taking a nap.”
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Maida and Dr. David Richlin of Livingston have been married for almost 38 years. Dr. Richlin, 77, who was born in New York City and grew up in South Orange, is a retired anesthesiologist and pain management specialist who was on staff at both New York Presbyterian Medical Center and Mount Sinai Medical Center in Manhattan and at Lehigh Valley Pocono Medical Center in Pennsylvania.
“David was a brilliant man,” Ms. Richlin, 73, who grew up on Long Island, said. “David and I met in June of 1986. We were married that December.”
“He was an accomplished pianist,” she said. “After hearing just four bars of classical music, he could tell you the whole history of the composer. He was fascinated by political figures and war heroes and cited statistics of hundreds of athletes. It was as though he built up history in his memory bank.”
He also collected stamps and coins. Whatever he learned, it stuck,” his wife said.
On the other hand, “If he was sitting at the dinner table with people who weren’t interesting, he’d fall asleep.”
He patented topical pain management medicines. “When we traveled worldwide, he would correct the tour guides, adding depth to the details of whatever landmark we were visiting,” she said. “Everyone was entranced by him.”
But then things started to change.
“Sometime in 2018, at 2:30 in the morning, I realized David was not in bed and not at home,” Ms. Richlin said. “When I got in contact with him and asked him where he was, he said: ‘I’m at the hospital!’ I told him, ‘David, you’re not on call!’
“He’d driven 40 miles to the Lehigh Valley from our former home in Flanders. I told him to come home, and he did.
“We’d discussed his plans to retire as a department anesthesiologist in November 2018, but in July, on what seemed like a whim, David returned home midday and said, ‘I’m home. I’m retired.
“‘They don’t need me anymore.’”
Ms. Richlin was flummoxed. “He was supposed to work until the end of the year,” she said.
“Something had happened that prompted his departure, but I didn’t know what,” she said. “I just knew something wasn’t right.”
Dr. Richlin’s deterioration was becoming more and more obvious. “One morning, I was putting the garbage out and noticed a dent in his car,” Ms. Richlin said. “When I asked him about it, he said, ‘Someone sideswiped me.’
“We brought the car to the body shop for an estimate and the mechanic showed us that the other side of the car was smashed in. David had no reaction.”
After the accident, Ms. Richlin, with the support of her three children, convinced her husband to see a neurologist. “I had noticed a tremor in his left hand; a relevant symptom since he’s a lefty,” she said. “But the physician didn’t perform any appropriate tests.
“David was very good at obfuscating answers. When he couldn’t respond, he’d deflect with: ‘You don’t know and you’re the doctor?’”
Ms. Richlin describes the rapport between her husband and the neurologist as collegial. “They spoke ‘doctor’ and I was summarily dismissed,” she said. “It was as though my observations and perceptions had no value.”
In 2019, Dr. Richlin’s internist recommended an NYU gerontologist. “He could not perform the basic skills test on the computer,” Ms. Richlin reported. “He had to have an aide help him answer the questions. The doctor diagnosed David with mild cognitive impairment and told us it would get worse.”
Just before the pandemic, Ms. Richlin was at an event when Dr. Richlin called her, telling her that he was lost. “When I eventually found him, I took his keys away,” she said. By 2021, his gait had changed. “He was shuffling,” she said. “He stopped keeping in touch with family. He was not concerned with household chores, but would do them if directed. He was less connected socially, removed from stimulating conversation. He was often trembling and drooling and his facial expressions were lax. He was retreating into himself more.
“Often, when he was standing, he’d say, ‘I think I’m going to faint’ and I’d need to steady him. At our annual vacation in Cape May with friends, David became incontinent. Soon he required a walker. He was sleeping much more, and when awake, he was often talking to no one. He began to make involuntary hand movements in the middle of the night. As warned by the gerontologist who’d assessed David in 2019, the unrelenting disease was progressing.”
Ms. Richlin knew that the abnormal gait, tremors, and rigidity were symptoms of Parkinson’s disease, and in 2023, a test revealed that Dr. Richlin had it. His motor and cognitive deficits were indicative of dementia with Lewy bodies.
“My sister and brother-in-law recommended I inquire about a day program for people with dementia in my local area,” she said. “They had been volunteers at such a program in Great Neck and seen firsthand how beneficial the adult day programs were for clients with memory deficits.”
About three years ago, Ms. Richlin learned about the Littman Memory Center’s day program at JCC MetroWest. “I scheduled David for an assessment with Bonnie Schecter, the program director,” she said. “After a mandatory trial day, David began participation in the program, which offered socialization, exercise, current events, music appreciation, discussion, word games and other person-centered activities. Initially, he didn’t show any enthusiasm for the program, but as time pressed on, he adjusted.”
The day program presented Ms. Richlin with an unexpected benefit. She was able to develop relationships with the other people with spouses in the program. “The connections were instantaneous,” she said. “We began to meet 10 to 20 minutes before pick-up time. Our bond with one another evolved organically: we were living with identical frustration and heartache.” At first, there were 10 wives in that group.
“Originally there were 10 of us,” she continued. “We’d walk into the waiting area, each in our own preoccupation with what version of our husband might greet us.
They’d meet their husbands — “former professors, accountants, pharmacists, attorneys, and physicians — with hugs and kisses, despite the fact they might not know our names. These shells of men, lost in the nebulous world of dementia, were delivered to their loved ones who were exhausted at the thought of continuing their afternoons and evenings of caregiving.”
Although it’s likely that these women would not have met otherwise, although they live within about 10 minutes of each other, they became close friends, sharing information, family stories, jokes, fears, resentments, and worries.
Their honest, cathartic talk sessions often end with laughter. “One woman had laid out her pink sweater on her dresser. When she got out of the shower, she saw that her husband, thinking it was his, had stretched it out beyond recognition as he tried to put it on. Another woman said that her husband mistakenly put his belt around his neck. ‘Tighter!’ his wife said to her friends, half seriously.”
“In January 2024, after over two years of participation in the day program, I was told about a more hands-on program that might better serve David’s needs,” Ms. Richlin said. “When the staff came to me to recommend the transition to the expanded program that met separately from the first group, I felt as though I was cut off at the knees. How would I continue to convene with my friends?”
Life continued to get in the way. Dr. Richlin was able to go to only six sessions of the more intensive program before he got covid in February, and he hasn’t been back to the JCC since then. But Ms. Richlin has remained close to her friends. “Since then, one of the husbands has died and another has moved to a long-term-care facility,” she said, but the spouses stay in touch.
“These women have given me life,” Ms. Richlin said. “They’ve given me a reason to wake up in the morning. Despite our own health issues, we each continue to do what we have to do for our spouses.”
The Kaplen Adult Reach Center in the Kaplen JCC provides programming that is designed to meet the special needs of adults who are living with Alzheimer’s disease and related forms of dementia. “Since 1988, our mission has been to enhance the daily lives of our participants and to provide support and needed respite for their caregivers,” Marlene Ceragno, the director of caregiver services and outreach at the JCC, said. “Our program is funded by private donors and a mix of private pay and long-term-care insurance, along with scholarship programs that are made available to clients.” She is a dementia-care practitioner and credentialed professional gerontologist; 14 of the 20 years she’s been on staff at the JCC have been in the senior department.
“When people think of the JCC, they think of the camp, the pool, the gym, the sports clinics and the cultural programs,” she said. “They don’t always think about services for those with dementia or support for their caregivers. Very often, people tell me after the fact, ‘I wish I knew.’”
The JCC offers three programs in person and on Zoom. One is for clients experiencing early stages of memory loss and their care partners, the second is a support group for caregivers only, and the third is support group for adult children of parents with memory impairment who need a forum to express their frustrations and concerns.
The Memory Cafe, offered on the third Wednesday of the month from 11:30 a.m. to 1 p.m., includes lunch and an opportunity for people in the early stages of memory loss and their care partners to engage with peers and gather resources for support at home. “Members of this group have shared that it’s the only safe space where they can discuss their challenges with honesty,” Ms. Ceragno said. “For example, I might ask: ‘Bob, have you noticed any changes in yourself since you started your new medication?’” And Bob will reply ‘no, no!’ But when I direct the question to his spouse, she’ll have plenty to say. Or a husband might say, ‘My wife doesn’t think I can drive anymore!’ and when I probe a little to determine if he has a formal diagnosis of Alzheimer’s or other form of dementia from his doctor and his wife admits he does, I’ll explain to both of them that he’s at risk of having his license revoked should he be involved in a motor vehicle incident. This validates his wife’s concerns and also, gently, without judgment, confirms for him that his wife’s concerns have merit.
“We offer tips and tools to support those with memory impairment like a dementia-friendly smartphone with bigger buttons and pictures on the numbers,” she continued.
“Couples have said: ‘My kids don’t get it; I wish there was a group for them!’” Ms. Ceragno said that adult children have a host of issues they struggle with; they’re worried about the parent who is doing the caregiving and the parent who is declining.
“We give each other the support and confidence to choose assisted living or long-term care settings for safety reasons,” she said. “I remind them that it’s better to let an assisted living community’s staff get to know a client’s likes, dislikes, moods and personality quirks while they still can communicate.
“The adult children who participate hold each others’ hands while they move their parents into long term care. When they worry that the decisions they’re making aren’t the right ones, I tell them if they made it out of love, they made the right decision — there’s no right or wrong.”
The online family dementia caregiver support group for adult children meets on the second Wednesday and fourth Thursday of the month, both at 6 p.m. “The virtual option works well for those caregivers who prefer to keep their personal challenges close to the vest,” Ms. Ceragno said. “And every Thursday at 1 p.m., a online family dementia caregiver support group meets to discuss a range of issues affecting those who care for a family member experiencing cognitive decline.”
Caregivers of all ages who have relationships with people living with dementia need emotional and educational support. “Symptoms of dementia can be unexpected, daunting, and often frightening,” Ms. Ceragno said. “The challenges an adult child faces are different from those experienced by a spouse or a sibling.
“But despite your connection to a person who is experiencing a merciless loss of memory, it’s essential to remember that caregivers need care too.”
For more information, visit www.jccmetrowest.org
To schedule at intake at the JCC MetroWest Memory Care Centers, contact Sharon Gordon, MSW at 973-530-3480 or write sgordon@jccmetrowest.org
To learn more about adult day programming and/or support groups for those caring for a loved one with dementia at Kaplen JCC on the Palisades, contact Marlene Ceragno, MA, CBP at mceragno@jccotp.org or 201-569-7900 #439.
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