When Dad Has Dementia

In the Orthodox Community, Caregivers Often Experience Additional Struggles 

The decision to care for her aging parents in her home came naturally for Rebbetzin Meira Davis, of Hollywood, Florida. 

“I was brought up in a multi-generational household,” says Rebbetzin Davis, whose husband, Rabbi Edward Davis, served as the morah d’atra of the Young Israel of Hollywood-Ft. Lauderdale, for thirty-six years. “I think it was easier for me because of this. It was part of my upbringing.”  

Rebbetzin Davis’s parents were already living with her family when her father began showing signs of dementia. Together with her husband and children, she cared for him until he passed away in 2015, shortly before his 100th birthday.  

“My father lived for eighteen years after the Alzheimer’s was first noticed,” says Rebbetzin Davis. “It was painful to watch his slow decline, but it was hardest when he realized he was losing his memory. He had such frustration and anger. That was hard for him and hard for us.” 

More than eleven million Americans care for a family member with a form of dementia. And, according to the Alzheimer’s Association, 70 percent of them feel stressed as a result. In the Orthodox community, however, caregivers often experience additional layers of complexity.  

“Dementia is challenging for anyone,” says Adina Segal, senior navigator and community builder with CaringKind, an organization devoted to helping people and families affected by cognitive impairment. “But the Orthodox community definitely has different needs,” which can make it harder to take advantage of programs offered to the general public.  

“In many ways, Orthodox caregivers get hit with a double whammy,” she explains. “Dementia progresses and the individual loses the ability to keep track of time. But Jewish life is all about time. There are so many ways this comes up. They think it’s Shabbat, but it’s Tuesday. Or they want to go to Minchah, but it’s really 3:00 am, and they are upset that no one will take them to shul. The family has to prevent the person from leaving the house.” 

At the same time, Segal adds, for the caregiver, “there are more reminders of their losses that come with dementia. It’s very common to see, for example, a man no longer remembering the words of Kiddush or other things he’s always done.” Times that used to be special for the family—like Shabbat and yom tov—can become fraught. 

Recognizing the unique needs of the Orthodox community, CaringKind brought Segal on board in 2019. She and her fellow social worker Shira Kedem provide comprehensive support to the Orthodox community through outreach, partnerships, online support groups and one-on-one consultation and coaching for caregivers. Although the organization is based in Manhattan, it serves people from across the US, as well as in Canada and Israel. 

Help Wanted 

The Brooklyn-based nonprofit Zicharon also offers online support groups for Orthodox caregivers, attracting between fifty and eighty participants each month.  

“When we first started, we hosted a symposium on dementia care and had an expert flown in,” recalls Leah Horowitz, the director. “Hundreds of seats had been set up in the hall, and I walked in and asked if we should perhaps remove some chairs, so it doesn’t look so bad if only a few people show up. In the end, it was packed—standing-room only. People came out because they really needed help.”  

Zicharon, which aims at teaching families how to navigate the stresses of caring for a loved one with dementia, was founded by an anonymous benefactor in 2012 who felt there was a real need in the frum community to support caregivers.   

Unfortunately, it often happens that a person gets a diagnosis of dementia . . . . Other than a follow-up appointment in six months, families have absolutely no idea what to do. 

The proverbial “Jewish guilt” experienced by caregivers is real and formidable, says Horowitz. “It takes time for people to learn that they cannot be there all the time,” she says. “Dementia is exhausting, and caregivers need a break. People are cracking from the load.”  

Moreover, family circumstances can contribute significantly to the difficulty faced by caregivers. “One of the most challenging situations we see is people who are in their forties or fifties, caring for a spouse with early-onset dementia,” she says. “These are families that still have young children at home. That’s terribly hard.” Another difficult scenario she sees is when a parent has remarried, and the spouse and children do not see eye-to-eye. “The family dynamics can become very complicated,” she says. 

Rebbetzin Davis considers herself fortunate that her siblings were helpful and appreciative of the care she gave to their father, although none lived nearby.  

“I had tremendous support from my siblings,” she says. “One sister is a nurse, and we called her with medical questions. My brother and I handled the finances. My other sister came often to help. It was so empowering.” She highlights how vital it is for siblings to show support and verbalize their appreciation for the person who is shouldering the burden of day-to-day care for a parent. “I had only very positive experiences in that regard,” she says. But as someone who has become an address for frum people caring for a parent with dementia, she adds, “I’ve heard from so many people who don’t.” 

For Nachman Kempler, the support of siblings isn’t an option as he cares for his parents, who are in their late eighties and both have dementia. “I am an only child,” he says. Fortunately, his wife has been a pillar of support. “My wife took the initiative to research dementia, finding valuable resources that continue to support us today,” he notes. These include the Alzheimer’s Association and CaringKind.  

Kempler is grateful for the circle of helpers who have stepped up in big ways, especially during the years his parents were still living near him in their Monsey, New York, home, before they moved to an assisted living facility about two years ago. There was the rosh kollel who came daily to encourage his mother to take her medications; his mother’s long-time friend who visited and kept her company while he took his father to medical appointments; the uncle and cousin who remained close and stayed involved; and the rav who made himself available whenever he was needed. “Hashem sent us many people who were of tremendous help,” Kempler says.  

Rebbetzin Davis also appreciated how the community was eager to help however they could. “My husband was the rabbi of a big shul,” she notes. “Everyone knew my parents and wanted to help us. I remember one fellow in particular would come by whenever I was away and take my dad and his home health aide out for lunch, or he’d take him to Minchah. There was even one time when he came to take my father to a funeral—but our non-Jewish aide reminded him that my father was a kohen and he couldn’t go!”  

In her experience, Rebbetzin Davis says, “In the frum community, it’s ingrained that people try to help.” 

Unfortunately, Kempler’s experiences have not always been positive in that regard. “Some people get involved where they don’t belong, but when you need them, they’re not there,” he says. In the early years following his parents’ diagnoses, he reached out for support, “but many people didn’t believe that my parents were experiencing this condition,” he recalls, because they seemed to be functioning reasonably well. “That disbelief was the hardest blow to bear—feeling that I wasn’t being trusted or believed.”  

Segal says this is an all-too-common problem. “A big challenge I hear from callers is that people question them,” she says. “Their father is still going to his regular shiur, and when they reach out to the rabbi, he doesn’t understand why they’re saying there’s a problem. He simply doesn’t see it.”  

Kempler notes that dementia progresses through stages, and in the earlier stages, “it’s often difficult to notice.” But ultimately, he adds, “No one would fabricate such a thing about their own parents.”  

Dementia progresses and the individual loses the ability to keep track of time. But Jewish life is all about time. . . . They think it’s Shabbat, but it’s Tuesday. Or they want to go to Minchah, but it’s really 3:00 am . . . 

Segal believes that most local Orthodox rabbis are equipped to answer questions that pertain to caring for a loved one with dementia—an important fact, given that “there are so many halachic questions that come up.” For example, Segal often hears about issues that arise when there’s a non-Jewish home health aide preparing or serving food. “A question that comes up in many ways is when the person [with dementia] isn’t cognizant of time, how much does one have to push?” she says. This can relate to Shabbat and yamim tovim, or to eating or not eating certain foods at certain times, for instance.   

Segal often finds that families struggle to ask the right questions—which ends up being a much larger challenge than finding a rav who can answer them. “Siblings have different perspectives [on their parent’s situation], so they ask and get different answers,” she says. “How much is each relative accepting and coming to terms with what’s happening? This impacts halachic questions, as well as financial planning, medical questions and making other arrangements, too.” In her role, Segal regularly helps families navigate these types of scenarios, where not everyone is on the same page. 

While there is more awareness than there used to be, dementia is still highly stigmatized, Segal says. “Families might notice for years that something’s wrong, but they shove it under the rug until it can’t be hidden anymore.”  

Horowitz notes that in so many families she works with, “a spouse will cover up for their spouse. When the kids come to visit, everyone is at their best. The spouse is dealing with crises at 2:00 am, but the children see a different picture entirely. They don’t know what’s really going on.” In the frum community, she says “we very much want to make believe there’s nothing wrong.” 

In the beginning, Horowitz thought that stigma would prevent people from reaching out to Zicharon for help, even confidentially. “I never thought this organization would take off,” she says. “But it did because the need is huge. And over the years we’ve definitely come a long way.”  

Better Outcomes 

“Unfortunately, it often happens that a person gets a diagnosis of dementia and, maybe, a prescription,” Segal says. “Other than a follow-up appointment in six months, families have absolutely no idea what to do. People should be proactive in learning, reaching out to professionals and social workers because the better care their loved one receives, the better outcomes . . . even if there is no cure.”  

In the early stages, Segal says, family members can do more to advocate to make sure documentation is in place, like a halachic living will, a healthcare proxy and power of attorney. “Ideally all adults should have these things in order,” Segal notes. “But it’s when these documents aren’t in place that we see drama in families.” At the end of the day, she says, “It’s incredibly hard for family members to deal with all the feelings that come about with this reality. But when people process their emotions and accept the situation, both the person and the family end up much better off.” 

Horowitz adds that there are skills and tools that can be learned that can make caregiving less overwhelming—like how to avoid arguing (“You’ll always lose and everyone will be upset”) and what topics of conversations and activities can foster pleasant interactions. And she shares ideas and recommendations with caregivers, ranging from the importance of good nutrition to online Torah learning resources that can engage someone with dementia.  

It’s been ten years since Rebbetzin Davis’s father passed away, but having experienced dementia up close, she makes sure to visit people in her community who have dementia. She also receives occasional calls from caregivers looking for words of chizuk and advice. “I tell people, ‘You have to work on yourself so hard, to have no expectations.’ It isn’t easy at all,” she says. “But above all, I remind people they have to care for themselves as well.”   

Rachel Schwartzberg is a writer and editor who lives with her family in Memphis, Tennessee.  

More in this section:

My Journey with Dementia by Wally Klatch, as told to Nechama Carmel 

Dementia in Halachah by Rabbi Dr. Jason Weiner 

Writing the Final Chapter: A Torah View on Facing Mortality by Rabbi Daniel Rose 

When Dad Has Dementia by Rachel Schwartzberg