My sisters left me to care for our dying dad on my own
It was my father on the line. “Hi, Dad, what’s up?”
“Um, this is going to sound crazy, but — what’s my phone number?”
My phone number, he remembered, but his own evaded him that day.
This was better than the day before, when he had called in a panic to inform me that he saw 14 soldiers patrolling outside his window. “But don’t worry, Hannah, I already alerted the Department of Homeland Security.”
My father grew up on Manhattan’s Lower East Side, in a traditional — but dysfunctional— Jewish family. Hoping to escape the craziness he had been raised with, after marrying my mother, who was raised totally secular, he dropped every last vestige of Jewish observance. Early in their marriage, my parents moved to a sleepy Midwestern town with absolutely no Jewish community. They had three daughters: Stacey, Jennifer, and me.
I was always a Daddy’s girl: My father and I shared a love of math and chocolate, and we would often play basketball in the driveway, or prank each other and laugh together uproariously.
When I was about eight years old, my beloved Daddy was diagnosed with an incurable degenerative disease. All I noticed at that early stage was that he would shuffle when he walked, but apparently the disease was already affecting him more profoundly at that point, because our home environment became very stressed. My parents soon separated, and then, when I was ten, they got divorced.
My father moved back to New York, where he lived with his elderly, infirm mother on the Lower East Side, until her passing several years after he arrived. He would call me every day, often to ask me peculiar questions, such as what his own phone number was, and other times to report on delusional phenomena: “Hannah, the FBI is chasing me over a bridge!” His medications caused him to hallucinate, and with time, his physical condition deteriorated as well. While he did not yet require the help of an aide, he did need someone nearby to help out in a pinch — a spouse would have been ideal — but there was no one around who could do that.
That’s why, when I graduated high school, I chose to attend a college in New York, near my dad. He was only 61 at the time, but his organs were beginning to fail, and he required frequent hospitalization, as well as a part-time aide. He had good days and bad days, and on the bad days he needed help with eating, getting dressed, and going to the bathroom. After he fell and broke his hip, he required a full-time aide.
The aides were not always helpful, though; some of them were downright incompetent or uncaring. Some nights, he would bang on the wall of his bedroom and shout, “I need help!” but the aide would sleep right through his calls. I was often the one to feed him and help him use the bathroom, and I was the one who clipped his nails, which the aides were not legally allowed to do. I would also schedule his medical and physical therapy appointments and accompany him to those visits when possible.
In college, along with majoring in accounting, I also began learning about Judaism seriously. As a kid, I had always been interested in religion, but I did not know a single Jew outside my own family and had no idea what being Jewish meant. By the time I finished college, I was fully observant.
My father was pleased with my newfound observance, and any time Hatzolah had to be summoned to whisk him to the hospital — which happened quite often — he would proudly inform the medics that his daughter was religious.
In the course of becoming a baalas teshuvah, I was guided by a rav, Rabbi Gelbaum, who eventually became something of a second father to me. Once, I mentioned to him that whenever I go to visit my father, he gets dressed up in a dress shirt, instead of wearing a sweatshirt, in an effort to look nice for me, even though this required a herculean effort.
“Really?” Rabbi Gelbaum said. “So why don’t you ask him not to eat chometz on Pesach?”
“He hasn’t done that since his bar mitzvah,” I replied. “That’s a hard mitzvah to ask him to do.”
I asked him anyway. Much to my shock, he agreed. Before Pesach, he went to the kosher grocery and bought potato starch cakes, lunch meats, cheese, and matzah, and that’s what he ate the entire week — all to make me happy.
In general, Dad tried as hard as he could not to impose on me. Although his dexterity was compromised and he had trouble dialing numbers on the phone, he would try to make phone calls himself for ten or twenty minutes before asking me to help him. Once he was already talking to someone on the phone, the phone would invariably slip downward, because he had trouble holding it in place, but when I would offer to hold the phone beside his ear he would say, “No, no, I want to do it myself.”
After graduating college and becoming certified as a CPA, I took a job at a high-pressure accounting firm, and a year later, when I was 24, I got engaged to a baal teshuvah named Yedidyah (formerly Jed). Since my family was not frum, and everyone besides my father lived far away, I had to plan my own wedding, from ordering invitations to sitting with the caterer to furnishing our apartment. During my engagement, my father was hospitalized, and I would come home from the hospital close to midnight most nights and then begin dealing with wedding preparations.
Yedidyah and I took an apartment near my father so that we could help him out as needed. Now that I had a home of my own, I wanted my father to come live with me, but Rabbi Gelbaum was adamantly opposed. “Absolutely not,” he said. “You can’t risk ruining your marriage.”
As a newlywed, I was working from eight to five most days, and eight to eight during tax season. Several months after I got married, I was expecting as well. And still, I was the only family member around to help my father, visit him, and manage his care.
From the time I moved to New York, I accompanied my father through multiple surgeries, including a triple bypass and double valve replacement, a hip replacement, and a tracheostomy. I was with him when doctors diagnosed him with diabetes, lung failure, liver failure, and kidney failure. Each of these diagnoses mandated a lengthy hospital stay, often for months at a time, and many times he was placed on life support. “I don’t think your father is going to make it,” the medical staff told me gravely, on numerous occasions. “You should say goodbye.”
But somehow, he always rebounded.
Once, when the end seemed imminent, he whispered to me, “Hannah, I’m scared to die.”
“So just don’t,” I said lightly.
“Oh, okay,” he replied. And, much to the astonishment of the doctors, he didn’t.
I was constantly taking days off work to be with him during medical procedures and to visit him in the hospital. Most of the time, he shared a room with three other patients, some of them homeless or otherwise alone in the world, and I saw clearly what a difference it made that I was there to advocate for him, consult with the doctors on his behalf, and remind the nurses to give him his medications. One particular medication had to be administered exactly on time — a delay of even 20 minutes could have left him paralyzed, or dead — and I was the one who stayed on top of his medication regimen and ensured that it was followed punctiliously.
In addition to bearing sole responsibility for my father’s care, I also had another time-consuming responsibility: to call my two sisters, Stacey and Jennifer, with detailed daily updates about Dad’s condition — even though the extent of their involvement was calling Dad maybe once a week and sending him a yearly birthday card.
After returning home from the hospital at midnight, I’d get on the phone with each of my sisters. Once, I called Jennifer and asked her to pass on the report to Stacey, since I was tired and had to be up at six the next morning, but the following day I got an angry call from Stacey. “I’m also Dad’s daughter!” she exclaimed indignantly. “I expect a direct phone call!”
Yet when I’d ask them to pitch in with Dad’s care, they’d invariably excuse themselves by saying that they lived too far away. “You’re there with him,” they’d argue. “What do you expect from us?”
“You might not be able to take him to his appointments,” I’d reply, “but you can schedule those appointments for him, and speak to the doctors, therapists, and aides over the phone. That would be a huge help.”
They weren’t willing to do that, but they still expected to be kept in the loop with personal updates — every single day.
I knew it was crucial to my father that my sisters and I got along. In fact, he would tell me, “To me the most important thing is that you girls stay close to one another.” Yedidyah also urged me to do whatever I needed to do to keep the peace in the family. Not wanting to cause a rift between us sisters and cause pain to Dad, I made a prodigious effort to continue calling Stacey and Jennifer every day.
But between my job, caring for Dad, and being newly married and expecting, I felt as though I was drowning.
“Why can’t they do something to help out?” I complained to Rabbi Gelbaum. “Why do I have to carry the entire responsibility myself?”
“Pretend you’re an only child,” he advised me.
He paused. “You know, I’m an only child myself,” he said. “And my wife and I took care of my mother in her final years. So I know how difficult caring for a parent can be, especially when there are no siblings to share the burden. But I also know what a privilege it ultimately is to be able to do this for a parent.”
That gave me a lot of chizuk. It also helped that Yedidyah encouraged me to visit Dad as much as possible, and he himself visited him frequently, even though by then Dad was not always lucid and was difficult to understand even when he was. Yedidyah did his best to be a steady support for his stressed-out wife who came home late at night more often than not, even during shanah rishonah, and he picked up the slack of what wasn’t getting done around the house because of my absence. When our first baby was born, he was the one who watched her so I could be with Dad.
Then my father was hospitalized yet again after falling, and when his condition stabilized, I got a call from the hospital social worker, who informed me that she could not authorize Dad’s release. “He’s too sick to go home, even with an aide,” she said. “He needs to be in a nursing facility.”
I arranged for Dad to be transferred to a nearby Jewish nursing home that had an excellent reputation.
Back when my father was first diagnosed, he had declared that he didn’t want to be a burden on anyone, and he wrote a living will expressing his preference to die rather than be placed on life support or have no quality of life. He had the will notarized before three witnesses, and he distributed copies of the will to all three of his daughters, as well as to his sister, Alice. But as the years passed and he became progressively more incapacitated, his tune and attitude changed drastically. He stopped saying, “I don’t want to be a burden,” and started saying, “I don’t want to die. I want to see my grandchildren.”
From the time he was moved to the nursing home, my father was in and out of the hospital numerous times. On many occasions, I was called to the hospital in middle of the night for one crisis or another, but each time, Dad rallied and made it through the night. Finally, about a year after my baby was born, he was hospitalized with lung failure, and it seemed that the end was near. Dad, who had always been a very chatty person, could no longer talk, and for him that was torture.
My heart went out to him. Being incapacitated and unable to speak, but still aware of what was going on, meant that Dad couldn’t even ask anyone to scratch his foot if he was itchy. He was a shell of a person, with a mostly functioning mind trapped inside a broken body. He was still in his sixties, but he had already been sick for close to two decades.
When Dad was placed on a ventilator and sedated, the medical staff advised me to say goodbye to him, and this time Stacey and Jennifer flew in to be with him.
Aunt Alice joined us as well, and when she arrived, she clipped a lock of his hair “as a remembrance.” (I found that downright creepy.) “I think it’s time to end it,” she said, clasping her hands. “What kind of life is this? This isn’t what your dad wanted.”
“Right,” Jennifer concurred. “Didn’t he write in his will that he doesn’t want to be on life support?”
“I’m pretty sure he did,” Stacey chimed in. “Does anyone have a copy of that paper?”
“I had one,” said Alice, “but I don’t know where it is.”
“Mine is somewhere at home,” said Jennifer. “Hannah, do you have it?”
I actually did have a copy of Dad’s will, but I wasn’t going to let on that I knew where it was, because I couldn’t, in good conscience, follow his express wishes, which conflicted with halachah. “Actually,” I spoke up, thinking quickly, “Dad made me his healthcare proxy, and overrode that old will.”
As it happened, Dad had not made me his healthcare proxy. But I figured that neither of my sisters, nor Alice, would challenge me on that assertion, since they all knew I had been managing his care singlehandedly for the past eight years.
“I’m going to have to be the one to sign off on the directive to pull the plug,” I said somberly.
“Oh, Hannah,” Alice whispered, touching my hand. “That’s a tough decision to have to make singlehandedly.”
Actually, it wasn’t a tough decision at all, because I knew that I would ask a rav and follow whatever guidance I got. But I played along and pretended that the decision was weighing heavily on me.
“Give me some time to think about this, okay?” I asked.
“Sure,” they all agreed.
When I left Dad’s room, I quickly called his doctor, a frum man, and asked him for his opinion, so that I could convey it to the rav. “Legally you’re allowed to do whatever you want,” he said. “If you want to know what the halachah is, you can ask a rav, but I can tell you that you have no sh’eilah whatsoever. Pulling the plug at this point is pure murder.”
“I just can’t do it,” I told my sisters and Alice.
Much to the surprise of everyone except me, Dad recovered from that crisis. He was weaned off the ventilator and released back to the nursing home, and, while he was still taking dozens of medications and was limited in many respects, mentally he was as lucid as I’d seen him in a decade, and he was able to sit up and schmooze with me. I even managed to sneak him some chocolate! Clearly, he still had plenty of life left to him.
Several months later, he was hospitalized after developing an infection in his heart, and the medical staff informed me that there was nothing they could do. “He probably has about two weeks left,” they said. They sent him back to the nursing home, where he lay hooked up to a million machines, expressionless and uncommunicative.
One afternoon, I came to visit, and after holding a one-sided conversation with Dad for a few minutes and saying some Tehillim, I walked out and mentioned to the nurse that he looked a bit yellow.
Her eyebrows flew up. “Yellow?” she asked in alarm. She ran into the room, where Dad’s chest was still rising and falling rhythmically, and exclaimed, “Oh, no!”
I hadn’t realized he was no longer alive, because the ventilator was breathing for him, and there was no change in his expression.
The nurse tried to hug me, but I recoiled, too shocked to absorb what she had said. This wasn’t supposed to happen! I wanted to shout. I’m only 26 years old! My father can’t die! True, Dad had been dying for years already, but is any child ever prepared for a parent to go? Dad may have been sick for 20 years, but he was still my Daddy, my hero.
When I called the Chevra Kaddisha to arrange Dad’s funeral and purchase a burial plot, the person on the phone said, “Would you like to buy yourself a plot, too?”
“No!” I practically shouted. “I’m only 26!”
But burying Dad turned out to be more complicated than just calling the Chevra Kaddisha. When I started talking to my sisters and Alice about the funeral, Stacey said, “Didn’t he mention that he wanted to be cremated?”
“Let’s do what they did for Uncle Bert,” Jennifer suggested.
Uncle Bert, my mother’s brother, had been embalmed, dressed in a suit and makeup, and placed on display for a week in an open casket.
Again, I had to think quickly. “Dad gave me power of attorney,” I announced. “And he told me he wanted a Jewish burial.”
Dad had never given me power of attorney or said anything about a Jewish burial, but again, my sisters and Alice saw no reason to challenge that statement.
Now, I realized with a jolt how fortunate it was that I had managed Dad’s care singlehandedly. Had my sisters and aunt been more involved, they would have had much more say in the end-of-life decisions — including whether to place Dad in a Jewish nursing home, whether to pull the plug, and whether to have him cremated — and I would have been outnumbered three-to-one on those decisions. Because I had been there for him all the years, when they weren’t, I was able to ensure that his departure from this world was completely al pi halachah.
In the process of making funeral arrangements, I contacted Alice, who was holding onto Dad’s life savings — a significant sum — and had in her name my grandmother’s Manhattan apartment, which we had always assumed would be split between her and my father. But Alice surprised us all by telling us that according to her (very creative) calculations, my father’s savings, as well as his half of the apartment, were rightfully hers. Legally, we had no recourse.
Thanks to Alice, my father had left no inheritance at all, other than a suitcase of his belongings that I brought home from the nursing home. Not having received a penny from Dad’s estate, my irate sisters refused to chip in for his burial costs. “We’re not going to pay thousands of dollars for a burial when we can have him cremated for a fraction of the cost,” they informed me.
I was still a newlywed, married just two years, and with Yedidyah learning in kollel, we could not afford to pay for the levayah. The Chevra Kaddisha was extremely kind to us, waiving all the funeral costs and charging us only for a basic burial plot.
The day of Dad’s levayah, a blizzard struck the East Coast. Yedidyah had arranged a minyan of some friends from yeshivah, but I didn’t expect anyone else to attend. To my surprise, about 40 people showed up. Rabbi Gelbaum and his wife drove for several hours in the snow, as did several other friends of mine, but many of the people there were total strangers.
“Welcome to the frum community,” a member of the Chevra Kaddisha told me when he saw how astounded I was by the crowd. “This is what we do for a fellow Yid.”
As the levayah came to a close, I realized that my frustration and resentment toward my sisters had evaporated. Instead, I felt bad for them. They hadn’t had the opportunity to help Dad through his suffering, and they didn’t have the comfort of looking back with the confidence that they had done everything they could for him. They were still fuming that Dad’s money had gone to Alice, while I had the reassurance of believing that everything that happens is meant to be. And they had no context for understanding why dozens of strangers had deemed Dad’s levayah important enough to attend, even in a blizzard.
Returning home from the levayah, I remembered Rabbi Gelbaum’s advice to me: “Pretend you’re an only child.” Feeling so alone, but at the same time part of something much bigger than myself, I realized that he was so, so right.
To have your story retold by C. Saphir, e-mail a brief synopsis to firstname.lastname@example.org or call +1.718.686.9339 extension 87204 and leave a message. Details will be changed to assure confidentiality.
(Originally featured in Mishpacha, Issue 844)
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