The Parameters of Kibbud Av V’eim

AS the rav of a congregation with many senior citizens, Rabbi Ebbin is often brought into conversations with adult children about how to take care of their aging parents. “It’s phenomenal how long people are living,” he says. “Today, it’s not unusual for people to live well into their nineties. Caring for aging parents is a tremendous challenge in this generation, more so than in any other. When you’re balancing work and kids and your personal life, it’s inherently difficult.”

Rabbi Ebbin is personally familiar with this challenge. “My wife had just given birth when my father was in the hospital having heart surgery. I told my wife, ‘I’m sorry, I have to go.’ When you’re pulled in all directions, you make mistakes, you feel guilty, but this is what Hashem wants from us. There’s so much spiritual growth and character development that will come through these challenges.”

Unfortunately, not everyone is up to the challenge. “I had an elderly congregant named Harvey who was in the early stages of dementia, but was being well cared for by his wife,” Rabbi Ebbin relates. “Unfortunately, his wife passed away and I would find Harvey wandering the streets looking confused. I would say, ‘Where are you going, Harvey?’ and he’d say, ‘I’m waiting for my wife.’ I called his adult children, who live in another state, and I said, ‘Your father’s not well, he shouldn’t be on his own,’ and they told me, ‘We’ve got it under control.’ Unfortunately, I had to call social services. His children were furious. They said, ‘How could you call the authorities on us?’ I told them, ‘I would do it again. I care about your father.’ ”

How can you practice kibbud av v’eim when what’s best for your parents isn’t what they want?

Rabbi Yerachmiel Seplowitz is the chaplain at FountainView, an independent-living community that also has an assisted-living section. While most of his residents are independent, he often has to help families navigate the challenges of getting their parents more help, or moving them to assisted living.

“When it comes to elderly parents with dementia, or who cannot live safely by themselves, it’s important to keep the concept of pikuach nefesh in mind,” he says. “Six hundred ten mitzvos in the Torah are nidcheh, are pushed aside, when it comes to pikuach nefesh. If it’s clear that a person is a danger to themselves, you can take action. If someone’s father can’t walk without falling — and he refuses to use his walker or cane — this is pikuach nefesh. He may need an aide or assisted-living facilities. I’ve seen parents get angry with their children for putting them in facilities, but if it must be done, children can sensitively, tactfully, explain what they’re doing and why, stressing their love and devotion to their parents.

“At the same time, children need to understand that no one likes to lose their independence. Their parents don’t want to see themselves as vulnerable and aged. Everyone is in denial about something, and this is common for older people. Giving up the car keys is a particularly sensitive topic. I’ve seen fights erupt when children try to remove keys from their parents who can no longer safely drive. But it has to be done. I know of someone who took the car keys from his father, but he made a fatal error — he didn’t hide the keys well enough. His father found them, went for a drive, and died in a car crash.

“On the flip side, it’s important to remember that only three mitzvos override pikuach nefesh — and kibbud av v’eim is not one of them. People jump into cars on Shabbos to take Hatzalah calls. But this doesn’t change the fact that they can’t forget about Shabbos. The Hatzalah man going to save a life can’t turn on the radio in his car to play music. Even if a child needs to disobey his father who refuses to get an aide when it’s a medical necessity, he should do it with sensitivity. He can speak to a rav for advice and make sure to do what he must with love.”

“It has to be done gently and respectfully,” Rabbi Ebbin concurs. “If it’s clear that your elderly mother shouldn’t be driving, it’s criminal to let her drive. It’s a matter of pikuach nefesh.”

Rabbi Ebbin had a congregant named Faigy who hit a car in his shul parking lot. A few weeks after that, he found her parked on the street outside the shul, crying hysterically because she couldn’t remember how to start her car. “I told her to leave her car on the street, and I asked another congregant to drive her home,” he relates. “Then I called her adult children and let them know what was going on. They had started to see signs that their mother was becoming mentally unbalanced, but they didn’t know quite what to do about it.

“After this incident, it was clear Faigy couldn’t live on her own anymore. When they told her they were taking the car keys away, she got violent. They called the police, and she got violent with them as well. The police took her to the ER, where she was put on medication, and they were able to get her into an assisted-living facility. Dementia can work two ways — sometimes it can make people sweeter, but often it can make them abusive, agitated, and even violent.”

Children who need to make decisions that are against their parents’ wishes find themselves in a challenging new predicament. Doing what’s best for your parents requires a lot of sensitivity. “It’s not easy,” Rabbi Ebbin admits. “It’s like the old joke: How do you shake a porcupine’s hand? Very carefully. Before my father passed away, we wanted him to move closer to my sister. He couldn’t walk up the stairs so he was confined to his basement for months. But he didn’t want to leave his home and community. My sister begged him with tears in her eyes to move near her and he finally relented.”

Although sensitivity is the ideal approach, sometimes children need to be assertive and become the decision maker. “Everyone wants their parents’ approval, so you have to approach it with a certain level of detachment,” he advises.

Says Rabbi Seplowitz, “Rav Dovid Feinstein told me that if a patient needs a feeding tube, you should try as hard as possible to convince them to get one. But if they don’t want to put up with the pain, they’re not mechuyav and you can’t knock them out and force the tube in. You can’t coerce someone to endure pain, even for their benefit.”

Rabbi Ebbin always tells people to be one step ahead. “Don’t wait for the fall or the accident. But at the same time, you must be sensitive to the loss of independence they’re experiencing. Geriatric depression is real. The life they imagined for themselves has changed.”

While there are many degrees of kibbud av v’eim, “the basic requirement is to make sure they’re physically taken care of — that they have food, clothes, housing, and are kept clean,” says Rabbi Ebbin.

Should an adult child take a parent into their home? Should one ever place a parent in a nursing home?

“When it comes to convincing a reluctant parent to enter a place where they will get more help, things can become difficult,” says Rabbi Seplowitz. “If parents are cognitively alert, the prospect of leaving their home can be terrifying.

“My mother lived in our home for the last few months of her life, with an on-and-off aide. At one point I had to sleep on the floor of her room for her safety. She was disturbed, and wanted to know why I was taking the trouble.

“‘Ma,’ I told her, ‘You took care of me when I was a newborn, when I was a baby, and I couldn’t understand what you were doing for me, and now I want to pay you back.’

“My general advice to the children of seniors in independent living is, ‘Don’t assume that they can. Don’t assume that they can’t.’ Sometimes children underestimate how much their parents can do, and sometimes they overestimate their abilities. While some parents are furious at having to come to a facility, many come and flourish in the warm, friendly atmosphere. There are plenty of potential friends, an accessible shul close by in the building, and stimulating shiurim. No longer is everything too far away, or impossible to reach because of rain, snow, or ice. Many people are so happy they came.”

Rabbi Ebbin says that every situation is different. “The Gemara says that there’s always a higher level in the mitzvah of kibbud av v’eim. You have to look at your personal situation, and the level of care that your parent needs. There’s no one right answer. However, if you do need to put a parent in a long-term care facility, do your research. There are very different levels of quality. You have an obligation to make sure that wherever your parents are, their physical needs are being taken care of and they’re living with dignity.”

Difficult Parents

IT was a Sunday morning, and Dovid — a teacher and 55-year-old father of three — had just finished the long drive to visit his mother, Sarah. At 87, she had moderate dementia, and she lived alone with her aide, Briana. He opened the door with his key and heard music blasting so loudly that he could feel the vibrations beneath his feet. “Turn it down,” his mother was yelling irritably at Briana, but she either didn’t hear her or purposely ignored her.

“It was at that moment that the idea of moving my mother into my house entered my mind,” Dovid explains. “It really bothered me to see my mother disrespected that way in her own home. And this was the second aide we had to fire. The first hadn’t been bathing her properly and keeping her clean enough. It had always been so important to my mother to be well-groomed and dressed. In her old state of mind, she wouldn’t have been caught dead going out like that.”

But acting on his idea wasn’t a simple matter. “As long as I can remember, my mother and I have had a difficult relationship,” Dovid explains. “She was very controlling. She always wanted to have the perfect image, and I was part of that: She wanted me to get perfect grades, become a doctor, marry someone from the right family. I felt like I had to do exactly what she wanted to keep her love. If I didn’t do what she considered the right thing — such as take premed classes — she wouldn’t return my calls. She was furious when I decided to become a teacher. She didn’t speak to me for a month.”

Still, Dovid remembers many good attributes about his mother. “She always made sure my siblings and I had everything we needed physically. We always had beautiful clothes, delicious dinners, nice vacations. She wasn’t a negligent mother by any means. She was very involved.”

Dovid’s father passed away in his eighties, and not long after, Dovid began to see signs of dementia in his mother. “She’d put a pot on the stove and forget about it. She’d get lost, and a neighbor had to bring her back to the house. I realized that something had to be done. My sister lived in a different state and couldn’t help much. That’s when we hired an aide to take care of her in her house.”

When Dovid came home from visiting his mother that Sunday, he was still brooding about how Briana had ignored his mother’s request to turn down the music. “My wife noticed something was wrong right away. ‘Did everything go okay at your mother’s house?’ she asked. I took a deep breath and said, ‘I want my mother to come live with us.’ She practically dropped the plate she was holding,” Dovid says with a laugh.

Dovid’s mother had always been overbearing with his wife. “When my mother would come over, it was more of an inspection than a visit: ‘Why are the children still in pajamas? Why are there toys on the floor? Why don’t you hire more cleaning help?’ These little comments had hurt my wife deeply. I explained why I wanted to bring my mother over. Despite our strained relationship, my mother had always taken care of my physical needs. She always made sure that I was clean, well dressed, and well fed. I felt it was my obligation to do the same for her.”

After a few days of thinking it over, Dovid’s wife agreed to give it a try. “But I promised that if she didn’t feel it was working out, we’d come up with a different solution,” he adds.

Dovid’s mother ended up living with them for a year and a half. “I thought my mother’s difficult personality would be the problem, but that wasn’t it at all,” Dovid says. “With dementia, she was no longer concerned with the state of our housekeeping. Sometimes she’d get agitated and we gave her medicine for that, but she wasn’t the critical woman I remembered from my childhood. She had mellowed with age. I would sit by her bedside and talk to her, and even though she didn’t know who I was, I could tell that she appreciated my presence.”

Eventually, Dovid’s mother had too many health problems to be taken care of at home. “We ended up having to put her in a skilled nursing facility. But between me, my wife, and my kids, someone from our family visited her a few times a week. By the time my mother passed away, I felt closer to her than I ever had before. Compassion had replaced resentment. I was so glad I had gotten the chance to care for her.”

In Dovid’s case, his once-difficult mother was no longer emotionally difficult. But what about children who are dealing with parents who, as they age, become more set in their negative ways or exhibit emotionally disturbing behavior?

“Here’s an extreme case that doesn’t apply to most of us, from the Shulchan Aruch Yoreh Deah 240:10,” says Rabbi Seplowitz. “A case is brought down of a parent with such extreme dementia that the child can’t deal with it. Quoting the Rambam, it seems that in such a case, a child should find someone else to deal with the parent, especially if interacting with the parent might lead to disrespect.

“But this isn’t typical. While it’s hard to pasken on generalities, when a parent with dementia is physically or emotionally abusive, children can protect themselves. But they can also remember that this abuse is the disease talking, not their parents. If an older person’s legs don’t work, we don’t feel upset or resentful. Dementia is the mind not working. If we look past the ruin of illness, we can remember the person beneath.

“We can’t give in to illogical, dangerous demands from parents, but we need to refuse properly. Acknowledging their feelings, speaking softly and with love, is the way to navigate this trying time.

“And patience. Lots and lots of patience. I knew a woman in her nineties who told me she was angry with her siblings because her father was in the hospital, and no one had told her that her mother had just passed away.  ‘And people are telling me my mother’s not dead!’ the woman fumed. For this woman who lost her parents decades ago, her mother just died. We need to deal with their reality, and speak to them in those terms. One should consult a rav for guidance, but you’re not always required to tell the true facts.

“This same woman once brought me a paper with her parents’ names and asked me to make a Mi Shebeirach for them. Telling her that her parents were dead wouldn’t get me anywhere. I took the paper and was silently mispallel for them in the Olam HaEmes, so that I wouldn’t be lying if I tell her I davened for them.”

“It’s difficult,” Rabbi Ebbin admits. “Sometimes a mother who was never satisfied with her daughter becomes more critical while living under her daughter’s care. Sometimes a father who was quick to anger lashes out more as he ages. You’re not strictly obligated to love, or even visit, your parents, but it is your obligation to make sure their physical needs are met.

“I have two pieces of advice for those who are experiencing emotional abuse from their elderly parents,” says Rabbi Ebbin. “Don’t take the bait, and don’t ask rational questions to irrational people. Don’t respond if you’re being verbally attacked. Don’t say, ‘Dad, why are you acting like this?’ I remind adult children in this situation, ‘This is not your mom or dad talking anymore.’”

Rabbi Ebbin relates a very powerful devar Torah he heard on kibbud av v’eim from Rabbi Noach Oelbaum, the rav of Khal Nachlas Yitzchok. “I went to the levayah of a woman in her late nineties. Her daughter had been very devoted to her, and took care of her for many, many years. The rav got up and said, ‘The Gemara says that Eisav had the mitzvah of kibbud av v’eim, more so than anyone else, and it’s in that zechus that this galus has been so long. But as we’re getting closer to Mashiach, our parents are living longer, and that’s to override Eisav’s zechus. By taking care of our parents, doing the mitzvah of kibbud av v’eim, we’re bringing Mashiach closer.”

“It can be so challenging to care for elderly parents,” says Rabbi Seplowitz. “Even though we don’t do mitzvos for the sake of sechar, we know that l’fum tzaara agra — the harder the mitzvah, the greater the reward. And the reward for kibbud av v’eim is arichas yamim.

“Here’s a beautiful thought. We know that whatever Hashem does is for a good reason. Today’s world is obsessed with the concept of ‘quality of life,’ and how the elderly lack this critical ingredient to a fulfilling life. But there’s a Torah concept that, ‘Ones rachmana patrei onah rachmana putra — that an ones is patur from mitzvos.’ But if someone really wants to do a mitzvah and circumstances prevent him from doing so, he will receive a reward as if he fulfilled the mitzvah. Someone with dementia is patur from Torah and mitzvos. Every day that, for example, an elderly man is alive but detached from the world — not putting on tefillin or davening — he receives sechar for the mitzvos that he can no longer do. Can you call this a life devoid of quality? Such a person is literally grabbing another chunk of Olam Haba every single day he is alive! In the same vein, a talmid chacham who can no longer learn is still worthy of respect. He is the ‘broken Luchos,’ still the receptacle of immense holiness.”

Turning Your House into a Nursing Home

DR.Dana Lustbader specializes in internal medicine, critical care, and palliative medicine. In addition to being a mother of five, she’s also the professor of medicine at Northwell Health in New York, where she founded and chaired the Department of Palliative Medicine.

“I focus on providing compassionate care for frail seniors and people with serious illnesses,” Dr. Lustbader explains. Her knowledge isn’t just limited to practicing medicine. Her real-life experience taking care of her father has also shaped her views on elder care.

“My father, Dr. Theodore Bernstein, was an engineer and the first person in his family to go to college,” Dr. Lustbader explains. “He was a very smart, scholarly man, and a master chess player. However, at ninety-six, he was in hospice in Madison, Wisconsin. He was dying of kidney failure and dementia and had fallen a few times. He had been hospitalized six times. As a doctor, I thought he’d be dead in a month.

“My sister and I decided to fly him with an aide to my living room in Long Island. I took down the chandelier and put a hospital bed and a commode in my living room. I knew it would be difficult caring for my elderly father with dementia and many other health issues, but again, I was certain it was only going to be for a month. I can do anything for a month, I thought.

“I took him off all his medications,” Dr. Lustbader recalls. “I let him eat anything he wanted. He loved scotch, mint chocolate chip ice cream, and matzah ball soup, so I never ran out. I always made sure we had all his favorite foods in the house. As a palliative care doctor, people often call me and say, ‘Mom isn’t eating enough. She only wants to eat ice cream,’ and I’ll say, ‘She’s eating ice cream? Great, what flavor? Make sure to keep it in the freezer.’”

Surrounded by Dr. Lustbader and her five adult children, Dr. Bernstein’s health started to improve. “He was around people who loved him. We would take him in his wheelchair to the park. We took him to restaurants and let him order vodka martinis. We never said no to him, and my father really started enjoying life again.”

Dr. Bernstein improved so much that his doctor said, “We have to take your father off hospice because he’s no longer dying.” In fact, for Pesach that year, Dr. Bernstein sat at the table, and read aloud from the Haggadah. Everyone was astounded. But now, Dr. Lustbader had to figure out how to care for her father without the services that hospice provides.

“Hospice is a very underutilized benefit,” Dr. Lustbader explains. “It provides the hospital bed, and for doctors and nurses to come to your house. It covers the cost of a home-health aide. People don’t use it enough because they don’t like the word hospice, but it provides amazing benefits.” Without the help of hospice, Dr. Lustbader had to figure out how she would take care of her father at home for the long haul.

“I was only able to take care of my father at home because of a new program called Independence at Home that Medicare was testing at the time,” Dr. Lustbader explains. “They were trying out a model of care of sending doctors to patients’ homes to do house calls because taking such a chronically sick patient to the doctor is a huge undertaking. What ends up happening is that you call 911 and they end up going to the emergency room and getting admitted. They might pick up an infection, or get frailer or more confused. This program is what allowed me to take care of my father at home. Independence at Home isn’t currently running, but Medicare continues to test out new programs.”

Despite Dr. Bernstein’s remarkable improvement, there were still plenty of challenges. Because her father couldn’t walk, they had set up his bed in the middle of the living room, along with his commode. “My younger two children were angry at first,” says Dr. Lustbader, “all the noises and smells in the middle of the living room were embarrassing.

“And it was exhausting,” Dr. Lustbader admits.  “I was up at night taking care of him, changing his diaper, and then I had to go to work at the hospital in the morning. My father had to wear a seatbelt in his wheelchair, because he’d forget he didn’t know how to walk anymore, and try to stand up and then fall down. When my daughter would watch him, he’d scream at her to, ‘Get this thing off me!’ He knew I was an important person to him (although he didn’t know exactly who I was), but he thought my daughter was the hired help. Usually my father was a kind, grateful person, but he’d get agitated at times.”

Planning Ahead

According to Dr. Lustbader, there are 40 million caregivers in this country caring for an aging person. “They’re mostly women — balancing work, their own children, and caring for a sick relative. It’s a real crisis, and the burden falls on family caregivers. The best thing you can do, as a parent, is to think about what matters most to you as you age so you can start to prepare, and figure out where you might want to live and who can take care of you,” she says.

Preparation is key, agrees Rabbi Shmuel Lefkowitz. He is the president of Chayim Aruchim, a project of Agudath Israel of America that’s dedicated to helping the Jewish community make end-of-life health care decisions. In this role, he’s helped thousands of people navigate one of the most difficult and confusing times of their lives.

Like Kaila, many people’s journeys into eldercare starts with a phone call about a health emergency. “When your parent is in the hospital, someone should be at their side the whole time,” Rabbi Lefkowitz stresses. “There are a lot of pervasive liberal attitudes that could influence your parent’s care. Someone should be there to advocate for them in case your parent needs help. Remember to be kind and respectful to the hospital staff. Bring doughnuts as a thank-you, but don’t be shy to ask questions about what’s going on with your parent. And if a doctor says, ‘There’s nothing more to do,’ go for a second opinion. Call Chayim Aruchim for a list of doctors who share our values.”

Ideally, there should only be one child making decisions for the parent. “Every aging person needs a medical directive — you can download it from Chayim Aruchim — that says who should make decisions for them,” Rabbi Lefkowitz says. “It shouldn’t be the spouse, otherwise they’ll be bombarded with pressure from different children. Everyone has a different rabbi, a different shitah. There should be one child that the parents choose to make their medical decisions.”

Similarly, Dr. Lustbader advises people to put one doctor in charge. “One of the reasons my father improved so much was because we took him off all his medications. He was pill-burdened,” she explains. “A ninety-six-year-old man doesn’t need to be on statins to control his cholesterol, which he needed in his sixties. His doctors had never reevaluated his medications to see if they were all still necessary. When dealing with patients of this age, sometimes less is more. Go to fewer specialists, and instead choose a doctor who’s captain of the ship. Decide which doctor knows your parent best and put that person in charge of all his medical care.”

Health care costs a lot of money, and this can put tremendous pressure on caregivers. Ideally, parents will have set aside money to cover their long-term health costs. On this point, Rabbi Lefkowitz emphasizes the importance of diversifying assets. “Sometimes when elderly people sell their house, they’ll be convinced to put all their money into a certain investment. That’s not a good idea,” he says. “The Gemara advises to keep one third cash, one third in real estate, and one third in business. Never put everything you have into one investment.”

As parents age, “Keep them close,” Rabbi Lefkowitz advises. “They should live with you, or close to you.” Walking distance on Shabbos is a huge convenience because then you won’t be far if they need your help — or simply want your company.

Getting outside help is critical for caregivers. In addition to privately hiring an aide, Dr. Lustbader also posted on a local chat group that she was looking for someone to play chess with her father once a week. “We ended up hiring the New York state chess champion of the eight-year-olds’ division,” Dr. Lustbader says with a laugh. “She was a little girl, but an amazing chess player. She would come and play with him every Sunday. She’d forfeit her queen and play with my Tatty for an hour and a half. They’d have an amazing chess game and really enjoy each other’s company. As a caregiver, it’s so important to come up with creative ways to give yourself a break. For that hour and a half, I could get things done while he was busy and happy.”

In his daughter’s home, Dr. Bernstein defied expectations, shocking his doctors by living for another year and a half. “Moving him into my house was the best thing we ever did. Even though he had severe dementia, he remembered his childhood perfectly, and I would ask him questions and videotape the answers. I heard stories from his childhood that I had never heard before,” Dr. Lustbader says. “Everyone in my family is so glad we had this time with him.”

(Originally featured in Family First, Issue 912)