Edited and translated by AI.
Itai: Hello, Ronit.
Ronit: Hi, Itai.
Itai: We’re basically coming to this meeting to launch a new podcast called Caregivers. Yes, or The Caregiver, or you haven’t decided on the final name. Where did the idea to create such a podcast or to explain to people or guide them towards what’s coming actually come from?
Ronit: The first idea was actually to do, to write a blog. It started right at the end of the illness, I mean, it started about a month or two before Israel passed away. I think maybe it also came from a therapeutic need, I started writing, writing, writing. Someone also told me this, why don’t you write? some relative asked me why I’m not writing? So I said, I really need to start writing, I started writing in a notebook, because later I would want to release it.
The initial thought was maybe that it’s really not a bad therapy, to get things out of you, and then, during the process, I said wait, but I have to tell people what I’m going through, because this is a common disease, we encounter it a lot, and maybe there are people who will learn something from it, from what I went through, maybe I can pass on some lessons I gathered along the way.
Itai: You said you started writing, during, basically, the treatment of Israel.
Ronit: Right. When he saw what you were writing what did he ask? He asked, what are you writing so much? What are you writing? So I said, I’m writing what we’re going through. I’m getting it out. I don’t remember if at that stage I told him I was planning to make a blog, I don’t remember if I thought at that moment to do it, to write a blog or podcast about it. But that’s what it was.
By the way, the idea to turn it later into a podcast, in parallel, came from an oncologist who treated Israel in day hospitalization, at Hadassah.
She noted that she sees new patients arriving each time, and they go through the whole route again and again each time. There’s no “battle heritage”, that passes between the patients and caregivers to other patients. So I told her I want to write some kind of blog, so she said, listen, people don’t tend to read so much. There’s a lot of material on the internet and they don’t really read, so maybe you need to do something else and that’s how the idea that we also need to make a podcast evolved.
Itai: All this is happening while you’re caring for Israel?
Ronit: No, the conversation with the doctor in day hospitalization was already after he passed away.
Itai: After he passed away, okay, but the writing, I mean, you knew you wanted to help people while you were experiencing the whole situation with Israel?
Ronit: Correct.
Itai: Where does this strength come from? to understand that you want to help others when you yourself are in some kind of hurricane?
Ronit: Again, at that moment, I think it was more about my therapy. I don’t know how much I thought about others. Okay. So I’m not such a saint.
I don’t remember the exact timeline, but I quickly realized that this needs to come out, because there are really many very important things in my opinion, that people need to know. Sometimes they discover it during the process, sometimes they don’t discover it at all, and even I, in this podcast journey, in every meeting, I discover something new, because I thought I knew everything, suddenly I see that I don’t.
I mean, every person, we all learn something new every day, and I’m aware of that and all, but I didn’t expect to learn more things in the specific context of specific things we went through.
Itai: From your new learning, which came as a result of recording the podcast, is there something you regret not doing in real time with Israel?
Ronit: Yes, there are a few things that… that I think could maybe have been done earlier, but I don’t think it could have been changed. I mean, because both the patient himself and the family go through a process, so let’s say the issue of talking about the emotional aspect, it takes time until a person understands and is ready for it, so even if you say, okay, you need to do this and that, you’re not always emotionally available for it.
Also, The disease in his case was very very… it was a very aggressive cancer, and it required a lot of physical work, I mean constant tests, and suddenly there are metastases in the brain, so you need to do… I mean, they discover a metastasis in an image, you need to go treat it and do this radiation, and do this and that and this and that, so there were constant rushes, really every week there were rushes, to the health offices, to hospitals, and more. So there was also no time for things that are…
For example, the issue of cannabis that would maybe require a bit more correct guidance, there are things that need more time and availability to deal with, and it wasn’t in the situation, and it’s not him and not me. Yes.
Itai: How old was he when the disease was discovered?
Ronit: Fifty-six.
Itai: A person, everyone always asks me, did he smoke?
Ronit: That’s the question that everybody asks. When I say my husband died of lung cancer, no, no. And then I say, you don’t know, today it’s not like that. Almost twenty percent, if I’m not mistaken, of all lung cancer cases ,are people who have never smoked in their lives, not passively, not actively, nothing.
Itai: So where from? What does medicine say or doesn’t say in this case?
Ronit: Medicine doesn’t know. They don’t know what caused the outbreak of the disease. I think it’s something around 20%, if that’s what I remember from the last thing I read quite a while ago. But listen, medicine is not an exact science.
Itai: Right. So they don’t know, but cancer can break out, there will always be passive smokers, active ones, right?
Ronit: Yes, yes, which is also true.
Itai: Of course. Still, 80% are smokers.
Ronit: Yes, that’s right.
Itai: Now, how did you discover it? For the first time. What was the first symptom?
Ronit: He coughed for a long time. After quite a while, a few weeks, I told him: “You must go to a lung doctor, you must go to a lung doctor,” and he postponed, postponed a bit. In the end, he went to the doctor, and they sent him for an X-ray, and in the X-ray there was something suspicious, and from there it rolled on, until he got to a doctor who diagnosed it. And from there we quickly got to the hospital.
In Sheba there’s a unit, For people who just found out they have cancer, they have a special unit, basically, the “welcome to the world of cancer”. They set up a very special unit, a very nice idea by the way. And that’s it, and then we understood that there’s something, there’s a problem.
Itai: Yes. Do you remember the first time you heard the word cancer, how was the reaction of both of you?
Ronit: Yes. We were in shock, both of us. I remember, I put my hand on his leg, I told him, “Don’t worry, we’ll fight this,” because Israel was a very combative type in the positive sense, I mean, he didn’t take things for granted, he always, he didn’t give up on things that were important, and I’m like that too, I mean, if I have things that I’m very oriented towards goals that I have, so I told him, okay, we’ll fight this, there’s nothing to do, like…Things happen, it’ll be okay. And this, by the way, I think it’s an important motto that later took me time to understand throughout the illness. I guess I distanced myself, by the way. I didn’t deny the fact of the disease, but I distanced myself, I think. I’m not a psychologist, so I don’t know if that’s the term, but…
But throughout the way, this was my motto. Always “it’ll be okay”. And I think, and we showed it also in the interview with “Friends of Medicine”, that I think the most important thing is hope. It’s an important thing for life in general, and certainly in such a disease, where there are always new metastases and it’s constantly deteriorating, there was never a moment of remission, but still there’s hope, because there are new drugs coming out, and you hear that someone got out of it, from cancer and even stage four, wow, or someone who’s already been… many years with the disease, you say, listen, no… who knows? Let’s think positively.
Yes, and Israel. I think he also cooperated with this until almost the last stages . He already understood that it… he wouldn’t get out of it. But I think it’s important to maintain hope throughout the way, because without hope… I remember the oncologist said, what’s the alternative? I mean, will you sit and wait for your death?
Itai: What stage was he when you discovered it?
Ronit: Four. Advanced. In lung cancer, usually it’s discovered late in a very advanced state.
Itai: Yes. And how long was the prognosis? Or did he… or how long was he going to live?
Ronit: That’s a question that I think skilled enough doctors don’t give answers to.
One doctor said he didn’t want to say, because in case that the patient’ life last more than that, they’ll come to him with complaints that he just scared them, and if it’s too short , then why are you depressing or something like that?
So most doctors don’t say, and you know what? out of modesty, it’s good that they don’t say, because they don’t know themselves. Right. Medicine isn’t really exact science , right? Right. You can’t know. Because there are patients…
There are patients who have the disease for a long time, they become chronic for a very long time, even stage four, and there are those who got out of it, which is really rare, but it happens. I remember we were with a doctor who wrote to Israel in an opinion, in summary, that “he explained to the patient that there’s no cure”. Meaning the disease is incurable.
And then we went to another doctor, and he saw that summary, so he said;” why write like that? Because we need to be, as doctors, humble enough, to know that we don’t know if the disease is incurable, because while we’re working, all kinds of laboratories and drug companies are developing all kinds of things and many things are changing in the world, and we don’t know..”. Don’t be definitive. Don’t be a prophet either. There’s no prophet in his own city, right? And it’s not just that, but also what happened, that indeed, during his illness, when the disease started we knew about two drugs in clinical trial and towards the end there were already four drugs in development.
It was a rare mutation he had, the chance that there would be four drugs in clinical trial is tiny, and the fact is it happened. Because there are a lot of developments in lung cancer specifically, but the doctor who talked to us two years before didn’t know there would be four drugs after a year and a half or something like that. So that’s why you always need to hope, yes, we don’t know.
Itai: I’ll ask about you, when did you actually understand that the world is now going to change? That all the domestic, family conduct is going to take a turn as a result of this diagnosis and that you’re actually becoming a caregiver, you’re actually accompanying or was it simply ongoing?
Ronit: It took me time to understand, it took me time to understand because at first you’re busy, you’re running, between tests, radiations, you’re running like crazy.
And after that, they gave him some experimental drug that actually he almost died from it. But before we understood that, there was a month that was okay. We didn’t need to run anywhere, he was in a clinical trial, he got the drug in a pill, we didn’t need anything, wow, the good life. Until “boom” came, wow, he almost died from it, really, because it turns out the drug didn’t work on him, and the cancer doubled itself in that month.
Its unbelievable that in that month I said:” wow, how nice, we’ll be able to return to life, we’ll be able to…”
Itai: A glimmer of optimism.
Ronit: Yes, we’ll be able to not run all the time to hospitals and stuff, wow, so good that there are drugs. That’s it, and after it ended in almost death, I said, okay. So I understood, so it took me few months to understand that this… wow, it’s going to be a full-time job.
Itai: Full-time job. For all of you? Was the whole family mobilized?
Ronit: We have three children. One was abroad and then he came back. I mean, it was really funny, because when the disease was discovered, then the first doctor who treated him said, okay, let’s start treatment right away, and Israel said to him, what do you mean? we set to go to Hong Kong with our son. He’s coming on a trip from New Zealand and stuff, and indeed we went there. The doctor was in a shock, but understood there’s nothing to do.
We traveled once or twice, even though he was in a disease where he needed treatment every week, every week chemo and stuff,… and that’s something important too. I mean, not to get too stressed. Like, true, it’s hard, and you need to go to hospitals etc., but you also need to live…
Itai: Right. You can’t sit and mourn. But it sounds like Israel was the one who set the tone? He says, I’m traveling, no matter what?
Ronit: Right. Right. He decided, later, but COVID had already started and then we couldn’t travel. Yes. I think if there wasn’t COVID we would have continued to travel.
Itai: Did COVID cause a deterioration in terms of mood?
Ronit: Definitely, for many people.
Itai: Yes, that’s why I’m asking.
Ronit: Yes, I’m sure because it prevented him from the trips he loved so much… trips, family gatherings. Right. He was at high risk but on the other hand we had the privilege.
We would travel to Hadassah Hospital, and the way to Hadassah is really beautiful. So we could drive freely on the roads when it was forbidden… because he had the permit. We had a permit, right. So there were also advantages, but yes, no doubt it wasn’t so good, but we found solutions. Friends came, when it was possible, we sat outside with masks and all, we went out to the open air. Yes, COVID didn’t help, but…That’s what it was.
Itai: And in terms of your treatment now, really the treatment of Israel and accompanying him and dealing with the doctors, because after all I assume he couldn’t deal with both the disease and the not-simple bureaucracy?
Ronit: Right, so there were several aspects, also the disease which is very complex. I assume not all types of cancers are so complex. The specific disease he had, with the relatively rare mutation, was complex. Now, why is it complex? For several reasons.
First of all, there’s the basic logistics of every day having to go for chemotherapy treatments, radiation, related things. Tons and tons of bureaucracy with health insurance funds, which was not a simple issue, including buying drugs that are non-standard drugs, like, and pharmacists don’t like to give them, not that they don’t like, they’re afraid you’ll abuse it, because it’s… opiates, very heavy drugs. So that’s also a lot of dealing and quite a few arguments with the pharmacy at first. They look at you as if, you’re some potential drug dealer. And besides that, there was the more, I’ll call it…
Research, intellectual, I don’t know what to call it, because what happened that really… I started reading. I mean, as soon as I understood which mutation it was, I started to go on the internet, I said, okay, everything’s on the internet, let’s read, what does this mean and what does that mean, and then very quickly I started to roll, because I… I’m a curious person, I like to understand what’s being talked about.
And then I started to research and read about all kinds of clinical trials. There’s an international clinical trials site you can enter. And I said, okay, let’s read, let’s come prepared to the meeting with the doctors, we’ll know what’s being talked about. And then I understood that there are some lacunae here.
Itai: What do you mean?
Ronit: We came to a doctor who… it turned out that… we asked about two experimental drugs, and then I asked him about another drug or two that I saw on the list, because I saw these things developing. He didn’t know the names of these drugs. I said, wait, there’s a problem here, why am I telling him about drugs he doesn’t know? And that lit some kind of red light for me.
Itai: Yes.
Ronit: Then we went to another doctor, we asked him about a clinical trial, and it turns out that clinical trials are conducted in hospitals, and Hospital A doesn’t know there’s a clinical trial in Hospital B. I don’t think it was coincidental. They don’t always know about clinical trials, meaning you could come in with a disease, and there’s a clinical trial happening within a ten-kilometer radius of where you are, and they don’t know about it.
Everyone in their hospital knows what’s happening there. They’re overwhelmed with patients and work, and they just don’t know, maybe. But then I said, wait, it’s not possible that we know things they don’t know.
Then I understood, okay, this is a rare mutation, we need to find someone who knows it better, and so we slowly progressed. During the story, I realized that someone needs to emphasize, someone from the caregiver side, in my case, it’s me, meaning, to emphasize and search for information that doctors aren’t always aware of. Throughout the journey, I saw that this was very, very important.
Starting with clinical trials they don’t know about. Of course, there are doctors who do know, by the way, but you don’t always get to them. The issue of medications, for example. Health insurance approves medications for certain treatments, but there are medications they don’t approve, which are outside the health basket.
So to justify receiving the medication, you need to go out of your way, you need to file an appeal, as mentioned in the “Friends of Medicine” chapter, you need to provide evidence for why to give the medication to the patient, and to do that, you need to work. So I started looking for clinical studies and…
There’s a professor that Israel worked with. She has a startup in the cancer field too, so she helped me and produced a study. An article from some database that’s only for researchers, so I collected a few articles, really marked and highlighted reasons for me: here was a trial with this, with this medication, and it worked partially, or it didn’t work.
I remember I came to the oncologist, I told him, look, I have three articles that justify, there’s no way the health insurance will refuse to give him the medication, and then he looks at it, quickly, he’s so smart and reads fast too, so he said, “this isn’t relevant , this isn’t relevant- he says, as it was a trial on mice”.
So I told him, okay, so let’s prove that Israel is a mouse. And let him get the medication, what do I care? But I saw that there’s a lot of work that needed to be done in parallel, to help, just to help even the most knowledgeable doctors, and the most top-notch, the most, most, most, most, need help, because they simply don’t have time, they’re collapsing, they’re collapsing under the number of patients. So you need to do a lot of research work in parallel and produce information.
Itai: How did you actually understand what was needed? You need to be active far beyond what a caregiver is actually active on a routine level. Because there’s an issue of much more intensified activity, I mean, you really advanced processes with the doctors. That’s something very unusual, by the way, in the relationship system between the doctor, the patient, and the caregiver.
Ronit: Right. Because first of all, I wanted him to get out of it. So I’ll do everything. So I read, I learned, I researched.
Itai: Israel didn’t ask you questions about why you’re doing this?
Ronit: No, no, he knew… First of all, he was actually… He was a very, very analytical type, he would have done it if he wasn’t sick. I mean, he would have researched, because he was very curious, etc.
Although I admit he told me he wasn’t sure if he would do the same thing if I were sick. I said, okay, I’ll forgive you. I appreciate the honesty. But there were things, I mean, in short, I wanted to save him. I think that was the main goal.
I also submit applications to the European Commission , for various… So there’s a lot there, when you write applications to the European Commission, they’re very heavy applications, also, there are a lot of heavy things like that, and it was relatively easy for me, although I don’t come from biology at all, I come from physics originally, but I saw, I said, wow, you can also read articles in biology, and I started, quoting, looking, there was genetic structure and such, I said, okay.
But there were other things that needed to be done, like social networks for example. Very, very important in my opinion, because social networks of patients with this mutation pass on a lot of information. So when you’re supposed to help doctors… I remember we were at the oncologist, and we talked about another experimental drug, which I had already read about, because I read what people said they had such and such side effects.
And I would update Israel, I would tell him, wow, you know, there’s this drug, and here I hear that someone has been on it for a few months, and he’s okay, except for… some side effect. I would encourage him, I mean, he saw that I was doing, but he didn’t ask, and I only provided him with the positive information I saw. Yes, and it uplifted him. And all the time, wow, let’s see these are now in a new clinical trial, wow, this and this and this…
And I remember we were at the oncologist and he asked about some side effects of some drug we were talking about, so the oncologist says: ask your wife. She knows better, She’s already in the networks. So we, as caregivers, must help…
Listen, it’s presumptuous, I’m not a doctor, I really have no idea about biology, but there are things I could do, so what I could do, I did in short. And I think it helped everyone, first it helps the doctors, that they saw someone cooperating with them, but beyond that it helps the patient, someone is fighting for him, again, to give hope. And to give hope, and you know what, for me too, the fact that I could work on it, like I switched to working on it, I stopped my work, I couldn’t work.
You work on something, you’re busy with it, and you don’t sit and think about your bitter fate. So it’s good, it’s good to work. Especially for cancer.
Itai: How long did the illness actually last?
Ronit: A year and ten months. Until he passed away. – Yes.
Itai: What tips would you really like to pass on through the podcast to those who are by the side of the patients?
First of all, it takes time… for the caregiver, also to understand that they’ve been thrown into this. Now there’s one caregiver in practice, I mean, even though there’s a family, supportive, friends, really a lot of people offered to drive and take and such, and the children, each one, had some responsibility, one responsible for the grass.The one who chose it.:)
One responsible for something else, one responsible like… there’s help and friends we have, luckily we have some friends who are doctors, they could advance appointments, could do all kinds of things, also Israel’s sister was, in the field as well,and helped with all kinds of things you know, but the thing is that these are very small things, they help, but the treatment is on one person .The caregiver.
The caregiver is ultimately the one who bears, he’s the project manager, you could call it, or he takes on the central responsibility. He can be helped with all kinds of things, but there’s one person who, in the end, it falls on. There’s nothing to do. I think by definition this is the situation. So the caregiver needs to understand that they’re in such a situation, and that they themselves are also at some risk. Now, what’s risk?
We once had a psychologist who did a family Zoom session with us, and she mentioned that there are studies showing many caregivers themselves later become ill. And that stressed me out tremendously, I said, wow, I’m not going to… I don’t want to be sick too, yes, I’m not mentally prepared for that. And I told myself that… I probably need to take care of myself.
And this is a very, very important message for caregivers. You find yourself in a problem? That a spouse, child, God forbid, parent or someone close has? But you need to understand that you must take care of yourself in this process. And this is a very, very important message. So I… my favorite pool, Gordon, was closed, it was during COVID. So I would ride my bike to the sea and swim in the sea. I mean, I understood that I had to maintain some sanity. I couldn’t meet friends for coffee, I didn’t have time for it either, even if it wasn’t for COVID. Yes. So I would talk on the phone with friends. I understood that I needed to take care of myself.
And it took me time to understand this. And I think this is a very important message for caregivers, for caregivers. Take care of yourselves. Take care of yourselves because you need to be strong for the patient. There’s one more thing we didn’t mention, which is also very important for caregivers. Yes, the issue of networking or talking, cancer is often called “The disease.”
As if there are no other diseases, okay. There are those who always know what’s being referred to when they say “the disease.” Yes. And people often tend to hide that their partner is sick or that they are sick. It’s understandable, I mean it’s also, you know, everyone with their medical confidentiality and so on. But I personally think it’s very important to talk about it. So that people are aware. That if they’re coughing, then yes, they need to pay attention to it.There are people who are aware to pay attention to what’s happening in their bodies,
And secondly, when you tell, for me, personally, it eases me when I let it out, but it’s very important because many people you don’t expect ,can give you a lot of information and a lot of tips and a lot of access to information, that you don’t think about.
Because suddenly someone knows, I’ll give an example, for instance :Les, a guy who worked with Israel, it turns out his mother-in-law had the same mutation, and then he says, ah, there’s an association in the United States, an association focused on Exon 20, for this mutation, so talk to them, I’ll give you the contact details. So now, Les worked with him for many years. Who even knew that his mother-in-law had lung cancer?
It’s actually like dreams. They always say, if you want to fulfill a dream, say it out loud, to many people, and in the end someone will help you fulfill that dream. So this is true for this world too. So here it’s not a dream, it’s more of a therapeutic matter and more of a matter of helping, but yes, here, these connections are very, very important. Yes, because you start telling, so the professor he worked with – helps,
Or he worked at the Innovation Authority, so there are people who had connections to all sorts of places, people who worked with him, one of them who is a doctor, and he gave him a lot of tips along the way, because he told him. Iif he hadn’t told people of his cancer, this information wouldn’t have reached anyone. So a lot of leads, a lot of referrals, a lot of information, the body-mind therapist we got to, it was by chance, I contacted a friend of his. Who referred me to a body-mind therapist, and not only that, he also did the convincing work on him, because he didn’t want to go to her, so I told him, do me a favor, talk to him, you, and you tell him about her. Yes. And only then was he convinced to go to her, and it was excellent. If I hadn’t talked to him, it wouldn’t have happened.
So yes, it’s important to talk and it’s important to let it out, not to everyone. Yes, of course. So secrecy in this case doesn’t help anyone. Because if you hide it and keep it at home or among acquaintances and friends, it doesn’t… it won’t benefit you. I don’t think so, but everyone has their own opinion. Everyone with their own judgment.
Itai: There’s also a lot of loneliness… within this interaction, that you’re basically alone, as you say, because in the end there’s one caregiver in the situation. Right. And you also don’t want to burden someone else with all the stress you have, so how do you deal with this on a mental level?
Ronit: It’s true, there’s a lot of loneliness. You feel like you’re fighting alone, again, even though people offer help and so on, but you’re alone in this battle.
Itai: In the end, you’re the one who’s at the radiation treatments and chemotherapy and you see all the deterioration, you’re alone. Right. And how do you deal with it? How do you ultimately maintain positivity for yourself and for Israel?
Ronit: It’s not easy… First of all, I think a sense of humour is a good thing, it helps. We were, we really were laughing, quite a bit. I would sit with the oncologist, and we would laugh too, because you have to laugh, because you’re in such deep shit , that you have no choice, you must use very dark humour, right? There’s nothing to do, I mean, that’s my coping mechanism, in difficult situations.
Itai: Does it also dispel the loneliness? When you use humour, or…?
Ronit: Yes, because then people laugh with you. And also… another thing, another important message, is not to broadcast misery as much as possible. Not that you’re not miserable, you are. You are alone and you’re miserable, but don’t sink into it, because what happens is that the moment you sink into this misery, and if you fall into depression, then the people who help you… slowly might distance themselves. Now, it’s not about learning who your friends are in difficult times, and it’s not necessarily… I’m happy to say there weren’t any significant betrayals from people I expected, but I felt that by continuing to be positive, it keeps the people close to me continuing to support me.
Because if I radiate more despair, there were such days, when there’s no choice, but if I’m constantly in prolonged depression, people won’t want to talk to me and they won’t help me. So I understood that there’s some…
Itai: You’re saying, don’t fall into depression?
Ronit: If possible. Yes. There are such days, and having compassion for myself is also important, but try all the time… to lift yourself up, to really find some hobby like I said swimming pool, sea, phone conversations, anything that will keep you or you as a caregiver, that will give you some drop, a piece of daily satisfaction. Yes. And then of course to look at things in a more positive way, humorous to some extent.
And also sometimes to take a distance, I mean, at first I would travel to Hadassah with him, and I would be with him in the chemotherapy treatment room, wow, it’s depressing, sitting there all day is really depressing. And then COVID started, and then they prohibited the entry of companions, and the truth is that it opened a window for me. So I would start taking walks in the Hadassah mountains, I would put on music, Spotify, I discovered the app.
Just taking walks while he was being treated, I wasn’t allowed to enter. And this, for example, in retrospect was a lifesaver, because it gave me some mental strength, I needed to recharge myself, I mean, you need to recharge yourself throughout this process all the time.
Itai: I’ll ask a question that’s a bit difficult, because we’re no longer in the COVID period in terms of not being able to enter treatments, and as you said yourself, in the first stage you entered all the treatments. So COVID gave you some…An excuse to escape a little. What happens when you really feel an obligation, discomfort, to go out and get out of… you know, also to take time for yourself.
Ronit: I don’t know what I would do, I mean I might have gotten into an infinite loop, and it would have made me depressed much faster and I wouldn’t have been able to cope.
Itai: If you had told Israel, regardless of COVID or anything else, “I’ll leave you here and I’m going out.” Do you think he would have been offended? That he would have taken it hard?
Ronit: Maybe. I don’t know, because there’s a very complex relationship here. Beyond the bureaucracy, there’s an emotional need to really have someone close to whom you can unload on and who understands the pain, who will accompany and hold your hand.
Someone who is very ill also suffers from severe pain. You can see they’re sick at any given moment, you can’t miss it. He would just sit here writhing in pain.
It’s very hard to see someone sick, 24/7. At some point, I realized I had to go to the sea to swim, otherwise I wouldn’t be able to cope. I would walk to the health clinic or ride my bike, for anything I could, just to allow myself some fresh air. This tip is really important – to take time for yourself too. It’s necessary.
You must do something you really love, like swimming, the sea, music, friends, books – anything that gives you a little escapism from the daily struggle. Because the caregiver’s situation is also difficult. The patient is surrounded by a care team, doctors and nurses. Although they’re suffering and in danger, there are people taking care of them. In contrast, no one really cares for the caregiver, not emotionally or practically.
People think that since someone is taking care of the patient, everything is fine. They might offer practical help, but no one really understands the caregiver’s situation. If the caregiver doesn’t have compassion for themselves, no one else will. They need to understand that they’re in a complex situation – they may not be in danger or suffering from pain, but they are supporting and need support themselves. They are essentially their own main support.
Itai: Before you got into all this chaos, did you know what a caregiver was?
No. Sorry, I’m mistaken. In our family, we have complex medical stories. We always have dramas. Twenty years ago, my mother was in a very difficult medical situation, she almost died. Knock on wood, I need wood.
It was a very complex story that lasted a year and a half, and my sister, my father and I were around her in the hospital. So it was a kind of caregiving, but there were three of us sharing the responsibility. And she was in the hospital all the time.
Itai: And you’re saying that it still usually falls on one person, so was your father the main caregiver?
At that time? Yes. Dad was the main caregiver, and my sister and I supported. We shared the responsibilities, but the main responsibility was on him.
Itai: And did you understand that the responsibility was on him?
Today I understand it more.
Itai: So if I understand correctly, the main purpose of the podcast is to provide support for the primary caregiver? In other words, to tell him or her, you’re not alone?
Ronit: Look, it’s not that you’re… you are alone. But you need to be aware that you’re alone, and you need to build a support network for yourself so you can cope. Because you’re caring for the patient and dealing with other matters. You often need to continue working – I wasn’t able to, I just gave up on it. You need to take care of children, your parents, there are many things you need to do simultaneously. It’s double work.
Itai: I meant that this podcast will be a refuge for the caregiver, also to help find solutions?
Ronit: Yes. With people I talked to, including professors and an emotional therapist. Body-mind therapist. The goal is to help as much as possible, both emotionally and functionally. What to do from a practical standpoint to help the patient? There’s a lot of work, and it’s important to get tips that are both functional and emotional.
I’m going to interview someone who’s an expert on grief. She told me she has three important S’s: Structure, Support, and Sun. Later I realized this is important for everyone in life, but especially for the caregiver.
You need structure: going to work, to the hospital, or just to the hospital. We didn’t have that because the disease was so agressive that something new came up all the time. I couldn’t schedule an appointment two days ahead because I didn’t know what would happen. Unpredictable after unpredictable, for two years.
So structure isn’t just about sports, although that’s very important for the caregiver. Support can be friends, psychologists, body-mind therapists, or coaches – everyone finds something for themselves. And the third thing is sun – something small that makes you feel good. For me, it’s the sea, for others, it might be a cup of coffee or baking. Do something small for yourself once a day that keeps you afloat. These three S’s are important, you need to keep them in mind.
Itai: Great, we’ll end with this tip. Ronit Schwartz Shamay, thank you very much.
Ronit: Thank you, Itai Chochma. And you’re invited to listen to the podcast.
Itai: My pleasure, hope it helps. If you have more questions, they can also contact you, right?
Yes, there’s a website where I’m doing the blog in parallel. Thank you very much to you too.