{"id":30454,"date":"2025-06-24T08:55:55","date_gmt":"2025-06-24T08:55:55","guid":{"rendered":"https:\/\/jewishaction.com\/?p=30454"},"modified":"2025-08-19T17:32:54","modified_gmt":"2025-08-19T17:32:54","slug":"when-dad-has-dementia","status":"publish","type":"post","link":"https:\/\/jewishaction.com\/health\/when-dad-has-dementia\/","title":{"rendered":"When Dad Has Dementia"},"content":{"rendered":"

\"\"<\/a>\u00a0<\/span><\/p>\n

In the Orthodox Community, Caregivers Often Experience Additional Struggles<\/span><\/i>\u00a0<\/span><\/h4>\n

\u00a0<\/span><\/p>\n

The decision to care for her aging parents in her home came naturally for Rebbetzin Meira Davis, of Hollywood, Florida.<\/span>\u00a0<\/span><\/p>\n

\u201cI was brought up in a multi-generational household,\u201d says Rebbetzin Davis, whose husband, Rabbi Edward Davis, served as the <\/span>morah d\u2019atra<\/span><\/i> of the Young Israel of Hollywood-Ft. Lauderdale, for thirty-six years. \u201cI think it was easier for me because of this. It was part of my upbringing.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Rebbetzin Davis\u2019s 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cMy father lived for eighteen years after the Alzheimer\u2019s was first noticed,\u201d says Rebbetzin Davis. \u201cIt 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.\u201d<\/span>\u00a0<\/span><\/p>\n

More than eleven million Americans care for a family member with a form of dementia. And, according to the Alzheimer\u2019s Association, 70 percent of them feel stressed as a result. In the Orthodox community, however, caregivers often experience additional layers of complexity.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cDementia is challenging for anyone,\u201d says Adina Segal, senior navigator and community builder with CaringKind, an organization devoted to helping people and families affected by cognitive impairment. \u201cBut the Orthodox community definitely has different needs,\u201d which can make it harder to take advantage of programs offered to the general public.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cIn many ways, Orthodox caregivers get hit with a double whammy,\u201d she explains. \u201cDementia 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\u2019s Shabbat, but it\u2019s Tuesday. Or they want to go to Minchah, but it\u2019s really 3:00 am<\/span>, and they are upset that no one will take them to shul. The family has to prevent the person from leaving the house.\u201d<\/span>\u00a0<\/span><\/p>\n

At the same time, Segal adds, for the caregiver, \u201cthere are more reminders of their losses that come with dementia. It\u2019s very common to see, for example, a man no longer remembering the words of Kiddush or other things he\u2019s always done.\u201d Times that used to be special for the family\u2014like Shabbat and <\/span>yom tov<\/span><\/i>\u2014can become fraught.<\/span>\u00a0<\/span><\/p>\n

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.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n

\n

Walking with Dementia<\/span><\/b>\u00a0<\/span><\/p>\n

For many Orthodox residents of Hollywood, Florida, the name Rebbetzin Meira Davis is synonymous with <\/span>kibbud av<\/span><\/i>.\u00a0<\/span>\u00a0<\/span><\/p>\n

For years, they would see her walking through the neighborhood with her father, who suffered from dementia, either taking him to or from shul. \u201cShe was a real model for the community,\u201d recalls Rabbi Yosef Weinstock, who began serving as assistant rabbi at the Young Israel of Hollywood-Ft. Lauderdale in 2005 and is now senior rabbi. \u201cShe tried to normalize [caring for someone with dementia].\u201d<\/span>\u00a0<\/span><\/p>\n

Rebbetzin Davis, he says, \u201cwas deeply committed to ensuring that her father, a man who had always been such a regular at shul, was able to continue going.\u201d Each week, she brought him to shul, concerned not only for his physical health but for his emotional and spiritual well being as well. Her unwavering devotion, the rabbi notes, made a profound impact on the community.<\/span>\u00a0<\/span><\/p>\n

Her hands-on approach to caring for a parent with dementia inspired many, adds Rebbetzin Judi Steinig, who traveled to Hollywood often as part of her role as senior director of the OU\u2019s Department of Community Projects & Partnerships.<\/span>\u00a0<\/span><\/p>\n

Rebbetzin Davis viewed it \u201cas a <\/span>zechut<\/span><\/i>, a true privilege,\u201d to care for her father, says Rebbetzin Steinig, and that was clear to all who witnessed the way she interacted with him. Seeing her walk through the neighborhood with her father, says Rabbi Weinstock, was a constant reminder that sometimes the most challenging <\/span>mitzvot<\/span><\/i> are also the most ennobling.<\/span>\u00a0<\/span><\/p>\n<\/div>\n

 <\/p>\n

Help Wanted<\/span><\/b>\u00a0<\/span><\/p>\n

The Brooklyn-based nonprofit Zicharon also offers online support groups for Orthodox caregivers, attracting between fifty and eighty participants each month.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWhen we first started, we hosted a symposium on dementia care and had an expert flown in,\u201d recalls Leah Horowitz, the director. \u201cHundreds 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\u2019t look so bad if only a few people show up. In the end, it was packed\u2014standing-room only. People came out because they really needed help.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

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 <\/span>frum<\/span><\/i> community to support caregivers.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

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.<\/span><\/b>\u00a0<\/span><\/p><\/blockquote>\n

The proverbial \u201cJewish guilt\u201d experienced by caregivers is real and formidable, says Horowitz. \u201cIt takes time for people to learn that they cannot be there all the time,\u201d she says. \u201cDementia is exhausting, and caregivers need a break. People are cracking from the load.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Moreover, family circumstances can contribute significantly to the difficulty faced by caregivers. \u201cOne of the most challenging situations we see is people who are in their forties or fifties, caring for a spouse with early-onset dementia,\u201d she says. \u201cThese are families that still have young children at home. That\u2019s terribly hard.\u201d Another difficult scenario she sees is when a parent has remarried, and the spouse and children do not see eye-to-eye. \u201cThe family dynamics can become very complicated,\u201d she says.<\/span>\u00a0<\/span><\/p>\n

Rebbetzin Davis considers herself fortunate that her siblings were helpful and appreciative of the care she gave to their father, although none lived nearby.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cI had tremendous support from my siblings,\u201d she says. \u201cOne 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.\u201d 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. \u201cI had only very positive experiences in that regard,\u201d she says. But as someone who has become an address for <\/span>frum<\/span><\/i> people caring for a parent with dementia, she adds, \u201cI\u2019ve heard from so many people who don\u2019t.\u201d<\/span>\u00a0<\/span><\/p>\n

For Nachman Kempler, the support of siblings isn\u2019t an option as he cares for his parents, who are in their late eighties and both have dementia. \u201cI am an only child,\u201d he says. Fortunately, his wife has been a pillar of support. \u201cMy wife took the initiative to research dementia, finding valuable resources that continue to support us today,\u201d he notes. These include the Alzheimer\u2019s Association and CaringKind.\u00a0<\/span>\u00a0<\/span><\/p>\n

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 <\/span>rosh kollel <\/span><\/i>who came daily to encourage his mother to take her medications; his mother\u2019s 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 <\/span>rav<\/span><\/i> who made himself available whenever he was needed. \u201cHashem sent us many people who were of tremendous help,\u201d Kempler says.\u00a0<\/span>\u00a0<\/span><\/p>\n

Rebbetzin Davis also appreciated how the community was eager to help however they could. \u201cMy husband was the rabbi of a big shul,\u201d she notes. \u201cEveryone 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\u2019d take him to Minchah. There was even one time when he came to take my father to a funeral\u2014but our non-Jewish aide reminded him that my father was a <\/span>kohen<\/span><\/i> and he couldn\u2019t go!\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

In her experience, Rebbetzin Davis says, \u201cIn the <\/span>frum<\/span><\/i> community, it\u2019s ingrained that people try to help.\u201d<\/span>\u00a0<\/span><\/p>\n

Unfortunately, Kempler\u2019s experiences have not always been positive in that regard. \u201cSome people get involved where they don\u2019t belong, but when you need them, they\u2019re not there,\u201d he says. In the early years following his parents\u2019 diagnoses, he reached out for support, \u201cbut many people didn\u2019t believe that my parents were experiencing this condition,\u201d he recalls, because they seemed to be functioning reasonably well. \u201cThat disbelief was the hardest blow to bear\u2014feeling that I wasn\u2019t being trusted or believed.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Segal says this is an all-too-common problem. \u201cA big challenge I hear from callers is that people question them,\u201d she says. \u201cTheir father is still going to his regular <\/span>shiur<\/span><\/i>, and when they reach out to the rabbi, he doesn\u2019t understand why they\u2019re saying there\u2019s a problem. He simply doesn\u2019t see it.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Kempler notes that dementia progresses through stages, and in the earlier stages, \u201cit\u2019s often difficult to notice.\u201d But ultimately, he adds, \u201cNo one would fabricate such a thing about their own parents.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Dementia progresses and the individual loses the ability to keep track of time. But Jewish life is all about time. . . . They think it\u2019s Shabbat, but it\u2019s Tuesday. Or they want to go to Minchah, but it\u2019s really 3:00 am<\/span> . . .<\/span><\/b>\u00a0<\/span><\/p><\/blockquote>\n

Segal believes that most local Orthodox rabbis are equipped to answer questions that pertain to caring for a loved one with dementia\u2014an important fact, given that \u201cthere are so many halachic questions that come up.\u201d For example, Segal often hears about issues that arise when there\u2019s a non-Jewish home health aide preparing or serving food. \u201cA question that comes up in many ways is when the person [with dementia] isn\u2019t cognizant of time, how much does one have to push?\u201d she says. This can relate to Shabbat and <\/span>yamim tovim<\/span><\/i>, or to eating or not eating certain foods at certain times, for instance.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

Segal often finds that families struggle to ask the right questions\u2014which ends up being a much larger challenge than finding a <\/span>rav<\/span><\/i> who can answer them. \u201cSiblings have different perspectives [on their parent\u2019s situation], so they ask and get different answers,\u201d she says. \u201cHow much is each relative accepting and coming to terms with what\u2019s happening? This impacts halachic questions, as well as financial planning, medical questions and making other arrangements, too.\u201d In her role, Segal regularly helps families navigate these types of scenarios, where not everyone is on the same page.<\/span>\u00a0<\/span><\/p>\n

While there is more awareness than there used to be, dementia is still highly stigmatized, Segal says. \u201cFamilies might notice for years that something\u2019s wrong, but they shove it under the rug until it can\u2019t be hidden anymore.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Horowitz notes that in so many families she works with, \u201ca 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\u2019t know what\u2019s really going on.\u201d In the <\/span>frum<\/span><\/i> community, she says \u201cwe very much want to make believe there\u2019s nothing wrong.\u201d<\/span>\u00a0<\/span><\/p>\n

In the beginning, Horowitz thought that stigma would prevent people from reaching out to Zicharon for help, even confidentially. \u201cI never thought this organization would take off,\u201d she says. \u201cBut it did because the need is huge. And over the years we\u2019ve definitely come a long way.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n

Better Outcomes<\/span><\/b>\u00a0<\/span><\/p>\n

\u201cUnfortunately, it often happens that a person gets a diagnosis of dementia and, maybe, a prescription,\u201d Segal says. \u201cOther 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.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

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. \u201cIdeally all adults should have these things in order,\u201d Segal notes. \u201cBut it\u2019s when these documents aren\u2019t in place that we see drama in families.\u201d At the end of the day, she says, \u201cIt\u2019s 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.\u201d<\/span>\u00a0<\/span><\/p>\n

Horowitz adds that there are skills and tools that can be learned that can make caregiving less overwhelming\u2014like how to avoid arguing (\u201cYou\u2019ll always lose and everyone will be upset\u201d) 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

It\u2019s been ten years since Rebbetzin Davis\u2019s 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 <\/span>chizuk<\/span><\/i> and advice. \u201cI tell people, \u2018You have to work on yourself so hard, to have no expectations.\u2019 It isn\u2019t easy at all,\u201d she says. \u201cBut above all, I remind people they have to care for themselves as well.\u201d\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

 <\/p>\n

\n

A New Resource<\/span><\/b>\u00a0<\/span><\/p>\n

Recognizing that dementia is a growing concern for many, the OU\u2019s Stimulating Program Initiative for Retirees that Inspires Thought (SPIRIT), which provides resources to those sixty and older, began offering seminars for both caregivers and those affected by the disease. \u201cThis issue affects so many older adults, either as patients or as caregivers,\u201d says Rebbetzin Judi Steinig, senior director of the OU\u2019s Department of Community Projects & Partnerships and the coordinator and host of SPIRIT.<\/span>\u00a0<\/span><\/p>\n

Around 10,000 retirees worldwide have tuned in to SPIRIT, which offers interactive Zoom sessions on a range of educational and Torah-based topics. Among the offerings focused on dementia, SPIRIT provides courses with cutting-edge strategies to improve the quality of life for both caregivers and patients, including sessions such as \u201cThe Montessori Approach to Dementia Care\u201d and \u201cSelf-Care for the Caregiver.\u201d For more information, visit <\/span>https:\/\/www.ou.org\/spirit\/<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n<\/div>\n

 <\/p>\n

Rachel Schwartzberg is a writer and editor who lives with her family in Memphis, Tennessee.<\/i>\u00a0\u00a0<\/span><\/p>\n

 <\/p>\n

More in this section:<\/h3>\n

My Journey with Dementia<\/span><\/b> b<\/em>y Wally Klatch, as told to Nechama Carmel<\/span><\/i>\u00a0<\/span><\/a><\/p>\n

Dementia in Halachah<\/span><\/b>\u00a0<\/span>by Rabbi Dr. Jason Weiner<\/span><\/i>\u00a0<\/span><\/a><\/p>\n

Writing the Final Chapter: A Torah View on Facing Mortality<\/span><\/b>\u00a0<\/span>by Rabbi Daniel Rose<\/span><\/i>\u00a0<\/span><\/a><\/p>\n

When Dad Has Dementia<\/span><\/b>\u00a0<\/span>by Rachel Schwartzberg<\/span><\/i><\/a>\u00a0<\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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