How My Husband and I Prepared for His Death

Two months after her husband, actor Amos Shouv, passed away, Tamar Barkai speaks freely about their decision to travel the road of dying together, without illusions and without missing one moment of life.

Shany Littman
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Tamar Barkai( L), Amos Shuv, with Avigail and Yoel.Credit: Ilya Melnikov, Courtesy of Tamar Barkai
Shany Littman

My talented and happy Avigail,

Stay as curious as you are, and aware and funny, and learning from everything in life. You have superb senses. You feel everything. You learned so quickly how to behave with me when I got sick. You behaved so perfectly. You hugged me and loved me and looked after me and didn’t make things hard for me, and you filled the house with lightness and pleasantness.

Keep looking after your brother Yoeli until he can look after himself. He’s so cute. He’s an imp and quite mischievous, and has a heart of gold. Help him make something good out of his impishness. He could use it to find original solutions to all kinds of problems, for example.

I am very happy that we created you both. You are very special and original and rare and good-hearted human beings, and I know you will contribute to the world with your talent.

In the last six months of his life, actor Amos Shouv was occupied with parting from everything dear to him – above all, his two young children, Avigail and Yoel, and his partner, Tamar Barkai. The above letter, penned a month before his death on June 1 at the age of 48, was one of his bequests to his 5-year-old daughter, Avigail. He left another letter for Yoel, who is 2. He also had long conversations with Tamar in the last half-year of their life together.

Now, not long after Amos’ death from a violent form of cancer, Tamar Barkai-Shouv wants to talk about the courageous and meticulously planned process of farewell that he conducted, relentlessly, from their apartment in central Tel Aviv. How they decided to travel the road of dying and death together in the most natural way, with a clear-eyed lack of illusions and without missing one moment of life, even at the desperate stage when its end is known and visible. In the apartment that was their home, she is sitting in her regular place on the balcony, thinner than ever despite all the gourmet meals her partner prepared for her in his final months.

The beginning was promising. Shouv and Barkai met seven years ago, brought together by a mutual friend. Tamar Barkai was then a promising young director of 33, a graduate of the Sam Spiegel Film and Television School in Jerusalem, who had just completed a documentary series and had returned from a long trip to India. Shouv – a film and theater actor who was one of the first stars of the Children’s Channel, which changed the map of Israeli television in the 1990s – was 41, good-looking and a very eligible bachelor. They both came to their blind date ready for a relationship.

In that first encounter, on the balcony of his apartment, he talked about the cancer that afflicted him in his adolescence, as a result of which his right leg had been amputated.

“He really played up the sex appeal of the ‘English Patient,’” Barkai recalls. “Obviously, for a real hunk like him, the fact that he was vulnerable was touching and made him less threatening.” Shouv promised not to fall ill again, she relates, and claimed that it was statistically unlikely. “Of course there’s no such statistic,” she laughs now, “but the idea was to reassure me. It gave me peace of mind.”

Shuv and Barkai’s wedding.Credit: Courtesy of Tamar Barkai

Three months later, Barkai moved into Shouv’s rented apartment in Tel Aviv, where the family still lives. He proposed a month after that, and six months after they met she became pregnant.

Barkai: “We wanted that, and everything was rosy. Then Avigail was born and my life went into a tailspin. Parenthood was hard for me. I felt as though my life had been stolen, but I thanked God that I had done it with him. It was clear from the word go that Amos was a terrific father. He was my guru in matters of education. It just flowed from him naturally, the right response in every situation with the children. He always knew what to say and how to say it, and how to give everyone space.”

You both did everything fast. Did you have the feeling that there wouldn’t be time?

“There was a force that drove everything, and we weren’t kids anymore, either. The intimacy was immediate. We had a plan to grow old together, down to minute details: to grow vegetables, to do yoga, to write. A retirement fantasy, which we really looked forward to.”

Barkai learned that having a partner with a disability isn’t always easy. “He took care to hide it,” she recalls. “His whole adolescence was a brilliant camouflage job, but it had an impact at all kinds of levels in our life together. In the summer it was terribly hot and it was hard to walk around with the prosthesis, because it sits on a vacuum and would keep slipping. So mid-June we would go into summer mode, with him staying home all day with the air conditioner, and me running around with the kids. I sometimes felt bitter about that.”

But compensation took the form of his marvelous parenting. “He was a fun dad, made them food, told them stories and went on outings with them. That’s one of the things that really scares me – how I’ll get along without him.”

Social conscience

Amos Shouv was born in 1967, in Ganei Am, a moshav in the country’s center, five years after the birth of his sister Yael, a film critic. Another sister, Moran, a curator and artist, was born a year after him, and a year after her Oded, a musician, came into the world. Their father, Yosef Shouv, is an agronomist, and Sara Shur, their mother, lectures on Jewish holidays in various academic forums.

Amos fell ill with bone cancer when he was 14 and lost his leg. After high school, he studied acting at Tel Aviv University and became a presenter on the Children’s Channel, where he achieved stardom – though according to Barkai that was something he never actively sought.

Tamar BarkaiCredit: Ilya Melnikov

“It happened because he definitely had star quality,” she says. “When girls chased him hysterically on the street, he had no idea why. For him it was a job. It was also very inappropriate for his family, which is very cultured and intellectual. But he made an interesting choice, in the face of his physical handicap.”

In the last years of his life, Shouv was engaged in various projects, including writing a screenplay with novelist Orly Castel-Bloom, distributing films of French production companies, and promoting social-justice causes. (“When we met he was a volunteer for Elem: Youth in Distress, and afterward did a lot of volunteer work. Three years ago, he did a course on the management of cultural institutions and set up a cultural project in Safed with a friend. He was always troubled by social injustice.”)

Most of the time, though, he looked after the children, says Barkai: “I went back to work half a year after Avigail was born and Amos stayed to look after her. Life was beautiful. He spent a lot of time with Avigail, and a very close bond formed between them.”

The first blow came three years ago: Barkai’s mother was diagnosed with terminal lung cancer. Tamar dropped everything to look after her.

“In the first six months, she received treatment, and you couldn’t see that she was sick,” she recalls. “There were farewell trips to Barcelona and London, and then her condition deteriorated. I became pregnant at that time – Yoel was born on the day her headstone was unveiled.”

The joy of the birth severed the mourning instantly, however: “The first night after Yoel was born was one of the happiest moments of my life. It was a great consolation after that horrendous period with my mother. But then my father’s health deteriorated, too, and I looked after both him and Yoel, and managed all the family’s affairs. Life became very complicated. I went from a Hollywood movie with the sweet husband and the perfect children to a life where the blows rained down mercilessly.”

Meanwhile, Tamar and Amos started to cultivate their dream of building a home in Moshav Ganei Am, on a lot belonging to his parents. “Amos dreamed of a perfect kitchen, in which he would bake a cake every day for the 4 o’clock snack. We’d already paid for the initial measurements. Two days before he went into Ichilov [Hospital in Tel Aviv] for tests we met with an architect. We had the feeling it was really going to happen.”

Bitter truth

Not long before this, Shouv had experienced unexplained stomach pains, diarrhea and vomiting; an initial series of tests turned up nothing.

Barkai: “Our feeling the whole time was that we would overcome this and continue with our life. We were both on a roll. But the stomach pains didn’t pass; the x-rays showed only a blockage. At one stage he could no longer eat, but the reason for the blockage still wasn’t clear. The cancer was hiding.”

Shouv and Barkai went from one doctor to another, but the mystery remained unsolved. She recalls one of the grim nights, when they came back from an analysis of a CT scan, in which the doctor told them, “I don’t know what it is, but it doesn’t look good.” Shouv started to cry when they left the doctor’s office. “He said, ‘What’s happening? What’s happening to my body?’ We didn’t sleep all night, I was nauseous with fear, because we suddenly thought, what if it’s something that can’t be resolved with a simple laparoscopy?”

Despite Amos' reluctance about undergoing surgery again, after the amputation he had as a teenager, the doctors decided they had no choice but to do a gastric bypass procedure that would both allow him to eat and reveal what was going on inside. “I remember the phone call, when the doctor told him, ‘You have no choice, my friend, you have to have this operation. I really hope I will be able to cure you.’ It was terrible to hear that: What does that mean – ‘hope’?

“The date was set for the operation, and we were both happy that at last this thing was going to be resolved. While he was being operated on, in Herzliya, I was on the beach, optimistic as usual. After about an hour I was summoned back to the hospital.”

Barkai entered the doctor’s office alone and he told her the bitter truth: “He said Amos was suffering from cancer at a very advanced stage. I asked him how much time he had left. He said, ‘Three-four months without treatment, a year, maybe three, with treatment.’ I started to negotiate with him: ‘Maybe five? Ten?’ Right off I thought of the children – I wanted them to have him as long as possible. In the same breath, he also told me that Amos didn’t have to know, because knowing would harm his chances of recovery, that it wasn’t wise to give him the whole picture.

“I left not knowing which was worse: the appalling news, or the imperative to hide the truth from my very best friend. Amos was always hungry for the truth, the whole truth. I called his sister, Moran, and she said that he wouldn’t compromise on less than the whole truth, and that it would not hurt his chances of recovery, because he would then want to recover even more intensely. I felt relieved. I called the doctor to say that the deal he wanted wouldn’t work with Amos. He didn’t argue.”

During six weeks of hospitalization earlier this year , Shouv and Barkai tried to come to terms with the grim forecast. “We went to the beach every day. It was very romantic. You get a blow like that and it straightaway puts you into a humble place, and gives you the feeling that every minute is meaningful. Willy-nilly, we were thrust into a place of dread, but also gratitude for our love and for having each other.”

But the operation that aimed to bypass his stomach and provide a direct connection to the intestines failed. From that moment he was fed intravenously, and began a first round of chemotherapy. Barkai effectively became a nurse, learning how to perform relatively complex medical procedures. “The house turned into a branch of the hospital,” she relates. “I learned how to hook him up to the IV machine and to give him injections. Beginning with the third chemo dose, we did that at home, too. But everything deteriorated on a steep, persistent slope. The chemo didn’t work and his body wasn’t receptive to any new medication. He was supposed to receive a second round of chemo, but then his liver began to malfunction. Everything went so fast.”

Spiritual toolboxes

Shouv decided not to waste time. Already months beforehand he had started to watch cooking shows obsessively, as part of his plan to realize at least one dream: to cook magnificent meals for the woman he loved. He had always been good in the kitchen, and during a respite between one chemo treatment and the next – when he was unable even to put a crumb into his own mouth – he started to bake and cook compulsively, preparing complicated dishes exclusively for Tamar. And all of it on one leg.

“It was crazy,” Barkai says. “At one point I told him that what would kill him wasn’t the cancer but his work in the kitchen. The children didn’t touch the food, it was too sophisticated for them. I had to taste everything every day, but it was really hard to swallow.”

He didn’t want visitors during this period, “and I understood that. My mother also closeted herself at that stage. He looked bad, with a tube in his nose, and appallingly thin.” Still, there was a wide circle of support, including parents from the children’s preschools, neighbors and others.

“Good people turned up everywhere. They didn’t come into the apartment, but there was a very intensive support network in the neighborhood and in the building. The neighbor on the fourth floor, whose daughter was in preschool with Yoel, picked him and Avigail up, and bathed them and gave them supper and so on. They pretty much lived with her then, because I devoted myself to looking after Amos. It was very clear that time was short, and there was much to do.”

To help them deal with the scenario of approaching death, Barkai says, they resorted to their respective spiritual and philosophical toolboxes.

“Each of us came with a background like that,” she recalls, “me with meditation and yoga, he with philosophy from university. We went through something very intense together. He contemplated the issues for himself and discussed them with me – the delicate dance between fighting the illness and accepting the situation, parting from and realizing fantasies. These options don’t seem to be able to coexist, but he was able to accommodate them. He wasn’t bitter. Not once in all the treatments did he ask what he had done to deserve this. There were bouts of irritation, because it was very difficult, but there was acceptance.”

At one stage, she relates, they got in touch with Rany Levy, who runs a project called One-on-One, inspired by his wife, Yael Simcha Pazuello, who had died of cancer a year and a half earlier.

Barkai: “She coped with the disease by means of meditation. In the project, volunteers visit cancer patients at home and instruct them in Mindfulness Meditation. During Amos’ sessions, there were powerful moments of crying with happiness, and insight about life and about his relations with people. He invited six close friends to sit with him on the balcony, for farewell conversations. One was a childhood friend from Paris who came specially for a few days and spent many hours with Amos. He did not suffer during this period. He was sharp and lucid and brilliant as always. He saw very clearly what was important and what was trivial.”

The final six months of his life were full of goodbyes. Barkai recalls in particular the last conversation they had with the doctors in the hospital, 10 days before Amos’ death, when they were told that his malfunctioning liver ruled out another round of chemotherapy, and that there was nothing more to be done. “Even in that conversation he was amazing, his sense of humor was still working. During the visit, someone knocked at the door, and Amos shouted, ‘Don’t come in, she’s informing me that I’m going to die, don’t come in.’”

‘Samba for Two’

Amid all this madness, Tamar turned 40. Shouv secretly organized a present – a hexagonal pendant of his design that was inspired by a pendant Barkai had received from her mother, with a dedication and their initials. The pendant wasn’t ready in time for her birthday, but they had a wedding anniversary two months later, says Barkai, “We were sitting on the balcony; the children were with the grandparents. We knew this was it. Amos played the [elegiac] song ‘Samba for Two’ on YouTube, and I wept. He took out the box with the pendant and I cried even more.

“Amos told me it would be easier for me without him, that people would fall in love with me in droves, that I shouldn’t wait too long. That I should safeguard the children. We had a lot of partings like that. Including when he could barely speak. We were silent quite a bit in that period, but we were always together. We just sat on the balcony, for months.”

The most important and most difficult decision that Barkai and Shouv made was that he would die at home. Various organizations and individuals had advised against this.

Barkai: “Even the people from the Israel Cancer Association, who run a home hospice program, told me it would be too difficult, that it was too much of a burden for one person, not least because he said he wanted to be conscious and not be given morphine. He wanted to be lucid until the end and die without drugs. That wasn’t quite possible, as it turned out.”

On the last Friday in May, Barkai returned home and realized that something had changed. Amos’ sister, Yael, who was in the apartment, told her that her brother had been wandering about restlessly for hours and asking for soup and sorbet.

“He said he wanted to die,” she recalls. “He’d been sleeping on the balcony for the past few days. But on that Friday I moved him to the bed and asked the hospice people to come and connect him to a morphine drip. At first they hesitated, because the day before he said he wanted to be fully conscious. I screamed at them that their time to act had arrived, so they had better snap to it. Afterward, I had to decide myself when to give him more morphine.

“It was terribly hard. Both children were delivered naturally, and he was there with me, helping. Suddenly I felt that natural childbirth and dying at home are very similar. In both cases there is a supportive approach that accepts pain. And the release afterward is an important element in both. They are the two poles of life, first breath and last breath.

“He was hooked up to the IV until the following Monday,” she continues. “On those nights, I slept with him in our bed. Once I hooked him up to the IV, it was clear that his days were numbered, so I called the children to part from him. They came into the room. He was sleeping. Yoel said, ‘Shalom, Abba,’ and kissed him on the forehead. Avigail arranged some dolls to sleep with him in the bed.

“At first I thought I would keep the children out of the house until he died. But when I realized that it would take a few days, I said, fine, let them be at home. It was important for them to see it happening, so he wouldn’t suddenly disappear on them, and so they wouldn’t have to visit him in some depressing hospital. In that sense, his death was more natural.

“On Sunday night he suddenly woke up in the middle of the night and seemed to be in pain. I gave him extra morphine. In the morning I knew he would not last the day. At noon I went into the room to prepare the IV. His breathing slowed down, until he took his last breath. It was so prosaic, so undramatic.”

‘Missed opportunities’

“And knows at last what absolute beauty is”

– Inscription on Amos Shouv’s headstone, from Plato’s “The Symposium,” the last book Shouv read before his death (translation: W. Hamilton, Penguin Books edition)

In the aftermath of her husband’s death, Barkai realized that she had known only a very particular slice of his life. During the shivah mourning period and afterward, she encountered people, stories, texts and paintings relating to him that she hadn’t been familiar with.

Barkai: “One of the things that’s terribly hard for me now is the feeling of missed opportunities. The family chapter in his life constituted true fulfillment for him – once the children came into the picture, the whole career thing was of less interest ... I think of the whole future that was missed and of the whole past that I didn’t yet know. We were very much in isolation, a very solitary couple. We didn’t need much besides one another. Now I have a puzzle to assemble: his life. He left a great many clues and road signs in the den, on the computer, in diaries and letters. But I am not going near them.”

Have you reached any conclusions after what happened? Is that even possible?

“I don’t have enough distance yet. But the cliché that ‘anything can happen’ becomes very meaningful when you experience it personally. Something very substantial changed within me, and I don’t yet know what it is. Because I am an optimistic person, I am telling myself that there’s an opportunity here. I’m 40 and I haven’t worked for the past three years – well, I worked as a nurse.

“This is a professional and personal junction, and without that partner who was very much present in my life. It usually doesn’t happen at age 40 that everything suddenly crumbles. It’s terribly threatening and scary and hard, but there’s also an exciting potential. I believe that good things will happen – that I will be able to rediscover myself in all kinds of ways.”

Another of Barkai’s insights is about death. “We are a society that represses death,” she says. “I watched YouTube talks by Yael Simcha Pazuello, who inspired the meditation project. She talked about the power of being psychologically prepared to die at any moment. Not to be in negotiations of ‘it will happen many years from now,’ but to be ready. Amos was in that place. He was not afraid of death in the least. The only thing he couldn’t accept was parting from the children and from me. He had no regrets about himself. He felt complete, loving and beloved. It’s a crucial matter: both how to live and how to die. And one is very bound up with the other. To know how to live demands awareness of death all the time.”

Were there other things that you and he didn’t manage to accomplish before his death?

“After the visit to the hospital when he heard the news of his approaching death, he wanted to go to the beach. But it was late already and I thought we would go the next day. But there was a heat wave, so it was impossible to go, and the day after that it was no longer possible. It breaks my heart.

“Besides that,” she continues, “he designed a bureau that was made by a carpenters’ cooperative in Florentin [a Tel Aviv neighborhood], to replace a battered one in the study. It arrived a few days before he died. He didn’t get to see it, but I told him it was there. He asked, ‘Nu, how is it?’ I replied that it was superb, and he said, ‘That’s it, then, all your problems are solved.’”

Despite the wrenching difficulty, Barkai is trying to make friends with the pain of loss, at the advice of her therapist. “At the end of the first week, after the shivah, all this insane pain surfaced, and I fell apart and didn’t stop crying for two days. I was terribly uptight. Alright, I told myself, I will cry now on Friday-Saturday and get up on Sunday and everything will be fine. But when I got up on Sunday, I saw the pain hadn’t gone anywhere.

“I understood that I had no choice but to accept it. I know that time will dull it, that it will become more bearable, but it’s here to stay. Amos’ absence is something that it was impossible to prepare myself for. Just as they say that nothing can prepare you for motherhood, nothing can prepare you for widowhood, either.”

But Barkai knows that she will finally learn how to live with it: “The worst thing of all happens and yet you still find reasons to smile and to feel good at certain moments.”