Episode 247: Dr. Allison Applebaum: Transforming Caregiver Struggles into Strengths
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Today I have a special guest for you, Dr. Allison Applebaum
Dr. Allison Applebaum is an Associate Attending Psychologist in the Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center (MSK) and an Associate Professor of Psychology in Psychiatry at Weill Cornell Medical College.
She is the Founding Director of the Caregivers Clinic at MSK, housed in the Counseling Center. The Caregivers Clinic is the first of its kind and provides comprehensive psychosocial care to family members and friends of patients who experience significant distress and burden as a result of their caregiving role.
Dr. Applebaum’s program of research focuses on the development and dissemination of psychosocial interventions for cancer caregivers, as well as understanding the impact of caregiver psychosocial wellbeing, prognostic awareness, and communication skills on advanced care planning. She has published over 100 articles, reviews, and book chapters on these topics, and is the editor of the textbook Cancer Caregivers (Oxford University Press, 2019). Dr. Applebaum has received competitive funding for her research, including awards from the National Cancer Institute, the National Institute of Nursing Research, and the American Cancer Society. She is the author of the recently published narrative nonfiction book from Simon Element, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving.
Join me in my conversation with Dr. Applebaum, as we talk about not only her book. But tools that caregivers can use throughout their caregiving years.
Charlotte Bayala: Thank you so much, Dr. Applebaum, for being here with us today.
Dr Applebaum: Thank you so
Charlotte Bayala: much for having me. Now, I always like to start with a person's caregiver story, and I'd love to have you share with everyone, the beginnings of you being a caregiver and who you
Dr Applebaum: cared for. Sure. So my partner in care was my father, Stanley Applebaum, and sometimes it's hard for me to figure out when exactly I became a caregiver because I think all of us sometimes that when that point can be, can be complicated, but I identified specifically in the winter of 2011.
At the time my dad had basically lived until his 90th year with only minor medical problems. But that winter he happened to go into heart failure while driving down the New Jersey Turnpike. He miraculously walked away from the crash, really with minor injuries. But he gave my phone number to the New Jersey State Police, not my mother's or anyone else in our family.
And I remember that moment. Of course, it was one of incredible terror, but also it struck me that I was the person he identified as responsible for him in that moment. And from that point, my caregiving responsibilities increased two years later, after a series of hospitalizations for urinary tract infection, which was the most common driver of trips to the ER as it is for so many older adults.
He developed delirium, which again is also very common in older adults. And, was given an antipsychotic medication that unfortunately put him into a coma. Oh, wow. And that experience culminated with, thankfully, him undergoing a PET scan that actually led to a diagnosis of Lewy body disease.
Dr Applebaum: And we were able then to move forward from that point with a plan for treatment. And at that point, I was very heavily involved in, in all aspects of his care. So that's, that's really how it started.
Charlotte Bayala: Wow. And how long were you how long were you his caregiver?
Dr Applebaum: My dad died on February 23rd of 2019, just over five years ago.
So I would say from 2011 to 2019, heavily involved, though, again, the the time is murky. And, you know, to acknowledge that our caregiving roles don't end with the death of the person we're taking care of. So I don't completely over at this point.
Charlotte Bayala: Yeah. Yeah. Well, and at the same time, when you were caring for your father, you were also involved with supporting caregivers in your
Dr Applebaum: own work.
Exactly. I am the founding director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, which is a targeted psychosocial care program for family caregivers. It is the first of its kind in the world. And I happened to begin the clinic. months before I identified as a family caregiver, , and so I then moved forward living both my personal caregiving journey and my professional journey in supporting family caregivers of patients with cancer and really had a crash course in all aspects of it.
Charlotte Bayala: do you think that you having that personal connection with caregiving at the beginnings of this program that you're starting, really informed how this was put together differently than it would have otherwise?
Dr Applebaum: I don't think it informed how it was put together per se in terms of the logistics of the clinical service, the way that we identify family caregivers and provide support.
But I will say the topics and targets of support were very much informed by my own experiences. And in fact, my own personal experiences have shaped much of the research I do on family caregivers. So for example, early on, it became really clear to me that I was going to be responsible for healthcare communication.
When my dad was unable to communicate on his own behalf because he was having a Lewy body disease fluctuation, I I was responsible for navigating communication with healthcare professionals. I had never received any training to do this. and it became very clear to me that we as family caregivers, are really the hub of an info flow wheel.
So I then recognize that importance of providing communication skills training to caregivers, which both found its way into the clinical care we provide and into some of the research that I've done that's been funded by the American Cancer Society. My experience also highlighted The fact that every caregiver, regardless of what illness their care partner has, whether it's LBD, Lewy Body Dementia, or disease, or cancer, or diabetes, or ALS, the one commonality that every caregiver is tasked with sitting with uncertainty, not knowing what the next year, or the next month, or the next week.
Or the next day, or in many cases, when my dad's fluctuations the next hour might bring. Uncertainty really shapes our experiences as family caregivers. And so it became very clear to me that I was going to want to give therapeutic tools to caregivers to be able to sit with uncertainty and to learn to do so without great detriment to themselves.
And so those are some ways in which my own experiences have shaped me. the the foci of my work moving forward. Yeah,
Charlotte Bayala: When I learned about your program I first was excited and then angry, I have to be honest, because That's the usual response,
Dr Applebaum: by the
Charlotte Bayala: way. Because at first I was excited that there was someone actually doing concentrated work in the clinical setting for caregivers specifically, and you work in my world, which is that of cancer, but then to know That something existed that I didn't have access to , in this cancer centers that my husband has been seen at, really highlighted not only how important I already knew it was to provide services for caregivers, but to also see that it's actually possible for cancer centers to do it and not have that as a priority.
Can you explain a little bit more about your program in case someone, has not heard about it, but is, being seen or their loved one is being treated in your center?
Dr Applebaum: Sure. I mean, I could briefly do that and also say that we're on the precipice of change. And I join you in your anger, because also as a family caregiver, I was never offered support.
Yeah. In a setting where my dad was. was being treated. So the caregivers clinic at Memorial Sun Kettering Cancer Center, the best way to find us is to go to the website, search caregiver, you'll see us listed. We provide support to caregivers of patients with all sites and stages of cancer across the entire caregiving trajectory from diagnosis until bereavement.
We provide care primarily in an individual format. We provide psychotherapy as well as medication management for those who need extra extra support. We do also conduct ad hoc family and couples therapy sessions. And what I mean by that is that we don't provide ongoing care. So for you and your husband, it wouldn't be ongoing weekly psychotherapy.
But if, for example, you were struggling with a difficult conversation you wanted to have with him, but wanted to do that in the presence of a therapist. Yeah. Do one or two sessions to help the two of you navigate a certain topic or transition and care. Okay. What I will say is that while to date, this has remained the only program of its kind, I am so committed to that changing.
At the end of 2023, I published in collaboration with the American Cancer Society, a toolkit. That can be used by cancer centers to give them guidance and how to build a similar support program. We're going to be leading webinars this spring and pending funding from the National Institutes of Health.
Over the next five years, I and a colleague, our goal is to train 200 cancer centers across this country to develop and maintain a similar type of support program. So while as of today, we should be angry, hopefully in five years when I talk again and you've been offered support and it's wonderful and we've begun to really meet the need.
Yeah. Oh,
Charlotte Bayala: that's awesome. I, I can say, that we really appreciate the work that you're doing, because you clearly could have stopped where you're at right now and focused on just the awesome, work that you're doing at your center, but wanting to move it forward to other centers is really, above and beyond.
Thank you. You're welcome. You have another project that has just come, out to the public that I feel is maybe this step in between, opening the center and now trying to move it forward. , you have a new book that was just released, called Stand By Me. And, Let me just share, whoever's listening to this, this is by far the best caregiving book I have ever read and I've read a lot of them.
I've had a lot of the authors here on this podcast and, all of them are really good at what they were focused on doing. However, this, Allison's book is the one that made me feel seen. Even though she wasn't talking about being a cancer caregiver, and shared so many tools and so many strategies and things to think of in our caregiving that came from a different place.
I think maybe part of it is because Allison, you come from this place of being a medical professional writing a book for caregivers. And so for a medical professional to be able to write a book that literally tells any caregiver I see what you're going through. I know this is an issue. I know this is where you're not being met in your needs.
Here are things that you can do to, support yourself, to find support, to advocate for yourself, to advocate for your loved one, but in a way where you're also acknowledging the difficulties of caregiving, the emotional aspects of it, the social issues that come up. And also weaving in your own personal story really was one of the most, if not the most validating book.
For my caregiving experience that I've ever read, , because you clearly could have gone just the clinical route and said, all right, you feel left out, sad, lonely. Here are some things that you can do, but that wasn't the case. And I cannot even imagine the amount of work it had to take to edit this to, Find the, , happy medium, but you definitely found it.
And I really love the fact that you put in the work to create what you have. So after having said that,
Dr Applebaum: Thank you. And I'm honored. And that means the world to me. Thanks. I appreciate exactly what I had hoped for. So thank you for my mission.
Charlotte Bayala: It is, it is definitely, the book that will be the one that I, recommend fully, to anyone that I meet or any caregiver that I come across.
First of all, let's talk about the title of your book because it doesn't stick out as a caregiving book. I could have seen it on the shelves and been like, Oh, stand by me. Okay. Yeah. I remember watching that movie and I remember the song. So. Why the title, first of all?
Dr Applebaum: Absolutely. So my father, Stan Applebaum, was a world renowned composer, orchestrator, arranger, and conductor.
He was, The primary arranger for Benny King, and he did the arrangement for Benny King's Stand By Me. And even more importantly than the arrangement, the string section in the middle of that song that turned that song into a piece of art was my dad's composition. That's beautiful. And so the song has great meaning to me and to my father, and is really A song that has been part of me my whole life and, as I stood by his bed, his bedside, his stretcher, as I stood by him the entire time as I was caring for him and as the idea for a book to share both my personal and professional caregiving journeys and lessons learned, it became clear to me that if I were ever to write such a book, would have to have a primary title of Stand By Me.
Yeah, and
Charlotte Bayala: then the theme runs throughout all the rest of the chapters, which I loved that you were able to find songs that he had a part in that went so perfectly to the chapters that you assigned them to. In the same thread of, okay, you have this, this really good program.
It's the first of its kind. You have, I'm sure, tons of work and a lot of, of lack of time to do things. Why, why
Dr Applebaum: write a book?
I remember back in 2013, this was before my dad's diagnosis of LBE, probably when we were in the ER waiting for his first admission, I started to send myself emails while standing by his bed. And these were notes to myself about things that had happened that I knew that I would want to write about in the future.
Things that really mirrored my work professionally, topics I wanted to bring into the clinical setting, or even thoughts that I felt were safer for me to email to myself. then to share with the medical team who would inevitably label me as that really, you know, belligerent family member daughter. Although I was just being outspoken, of course.
And I realized as I was caring for him, that there was a very important story to tell. What I'm going to say next is not new. I've heard so many colleagues of mine who are healthcare professionals and have also been caregivers or who've also been patients say some iteration of, you know, I was. am and was on faculty in the same hospital where my dad was receiving care, most of his care.
And yet it was so very difficult for me to navigate our healthcare system. And I have a doctorate. I I'm a caregiving scientist. I'm now an international leader in the space. And yet I could not navigate our horrendous healthcare system, our horrendous payment system or lack thereof. And It just became so clear to me that if this was my experience, the experience of the majority of individuals in in the country was dramatically worse.
I came to have many gifts, I'm highly educated, I have, an income, I have health insurance, I'm a white woman, I speak English, blah, blah, blah, like I have all these gifts, and yet it was so hard, and so I realized that there were some very important stories for us to tell, and I also realized that the other gift That I have is that I am living this both personally and professionally.
And I was, you know, it's a, it was a gift and a burden, right? Of course, incredibly challenging. But the gift was that I had this unique perspective. And I realized that this was going to be important to tell. Now I will share the book that you read is a little bit different from the one I initially wrote.
Which is, And in part, the way that it morphed and changed was during lockdown, due to COVID 19. Our lockdown landed about one year after my dad's death. Okay. And it was a time where most individuals after death and after that first year are, rebuilding their lives and maybe traveling and, sort of taking control and doing things that can bring them great meaning and purpose.
And, I was in lockdown, unable to do those things, quite isolated in an apartment in New York City. And so the writing process for me was very much part of my own grief journey. But it was also a way for me to address some of my own, what I'm going to call existential distress, which was at the time, not surprised to any listeners here, the waitlist for care and the caregiver's clinic became exponential.
Okay. There were hundreds and hundreds of caregivers desperate for support. And there were only so many of us who could provide care. And it became very clear to me that we needed other ways in which we could get support out. And I realized that if I did some shifting of the writing and, and really wove in lessons learn.
And, tactics that can be used to be empowered as caregivers, that this could be a book that not only describes the horrendous situation faced by the 53 million caregivers in the United States today, but also provide practical tools and support and help caregivers such as yourself to feel validated and seen and heard and not alone.
And so that really was the motivation to get it to the place and the format that it's in today.
Charlotte Bayala: Yeah, well, you actually, you really did it and went probably further than you might have expected because it really does, it does do all that and more and, you talk about a lot of things that I feel caregivers know to be true.
But in some instances might not even realize that what they do or what they're feeling are actual commonalities, no matter. What kind of caregivers they are. And also that they are, are really good either coping mechanisms, to deal with stress and anxiety and overwhelmed, but are really good ways of them advocating for their loved one that they just naturally fell into.
And I think one of those is, you talk a lot about feeling this, this And really, I, I could really feel the responsibility you, felt in trying to convey your father's story to everyone especially when he was being admitted to an ER or going into a hospital. And at first I was like, I thought, Oh, well, yeah, I do this all the time.
And also felt then. my own tie to the emotions tied into the almost sometimes it felt like a burden to have to convey who my husband is to a new doctor. Then as I kept reading, it was more of a heaviness of understanding of how much work that actually is that I feel I didn't identify because it's something I did.
Something I always do without thought that sitting back and thinking about it. I, I, I did at the end of the first chapter. I was like, wow, I really do have someone actually say it. So the reason why I'm talking to you, I talked to other people is because I want caregivers to hear, , these experiences are shared.
It's the first time that I actually was getting that for myself. So thank you for that. feeling so connected to the stories that you weave into this book where it could have just been here are skills because the book is filled with them. You could, you could have done either your story with your father or just the, the clinical side of it.
So I really appreciate you sharing so much of yourself in this book because you, you didn't have to, but it made the book, , so much better, so much more relatable. And you were able to let us see ourselves through the things that you've been through, even though your experience and my experiences are completely different.
Thank you. Right. And you share this responsibility of, making sure that people knew about your father. So I'd love, I'd love for you to share a little bit about that because it could be that other people need to hear that they're actually doing this or that there's an importance in, in doing this.
Dr Applebaum: I really appreciate this question, and you're devoting some time to this topic. There's a specific reason why this is the first chapter. It's a topic I address in the first chapter, and that's because I think that our responsibility as family caregivers to convey our care partner's personhood is so important.
really at the heart of who we are and what we do. And yet it's so infrequently, if never labeled, articulated or identified. In fact, I had never seen it discussed in any book on caregiving. And yet I found myself thinking, this is basically the bread and butter of what I'm doing at all times. So my dad, as a result of his Lewy body disease, in many ways, in many moments was unable to advocate for himself.
And certainly when he was in the coma that was driven home. Early on, it became so clear to me that without me by his side to serve as his eyes and his ears and his voice, there was no way for any members of the PASI medical teams to have any idea who Stan Applebaum was and what mattered to him. And when I say tell his story, I don't necessarily mean to tell a story of being this musician with this legacy.
And certainly I try, you know, I did weave that in at times. When, when I could engage with healthcare professionals, but telling a story meant telling who he was as a human. What his goals for life were the fact that despite the fact that he was in his early 90s He still had plans to live to at least a hundred and three.
That was his goal He wanted to live life and he was continuing to write music. He was continuing to write children's stories He was someone who never wanted to stop growing or learning in age 95. He had his home health aides teach him to Galog, their native language. This was a man who was not ready to go.
And without me by his side, he would have been another 90 something year old frail man who could not interact. Who's labeled probably as. What's the point? And it became very clear to me that it was my job to tell his story as in whatever iteration that meant. And I did share and it sounds like that was helpful for you, which I'm glad to hear that at times it felt weight and like an incredible weight on my shoulders to get you to tell and to retell a story.
But it became very clear to me that that was perhaps one of the most important things that I could do as a family caregiver to ensure that he would receive care that was in concordance with his goals of life. And had I not done that, he would have died while in that coma. Mm hmm.
Charlotte Bayala: Yeah. Yeah. I've, I've talked to a lot of caregivers who, when, for me, this is, this is 100 percent my main goal and focus whenever my husband has cancer surgeries because, I just, I always have had this need to be there before rounds started, which you never know when they're going to, never know, never know sometime in the morning and between six and noon.
Then. nurse changes, to the point that when I knew there was going to be a nurse change at, let's say midnight, I would call into the nurses, station, especially now that, rules have changed for caregivers to be able to have access at night, you know, visiting hours definitely were modified during, COVID.
To just call and say, Hey, I just want to, introduce myself. Like, and so often did I feel like I was being extra, right? Sometimes I, I did get that feeling from the people that I was speaking to, which then I like, I just, my instinct is always to do the opposite of what people feel I should do, and so them giving me that pushback,, I was like, well, I'm just going to talk to you more about, you know, make sure to stay in communication and, and to always do it, even if there is irritation or, or if there's a feeling that care is not being given to, Like you said, find a way to share that with yourself.
You emailed it to yourself. I'm sure, I, would kind of internalize it and then complain about it to someone else, only to the point where it wasn't detrimental or, you know, Or limiting care that my husband, she got, that's when you become vocal. I feel like a lot of people don't feel there's a reason to talk to a healthcare provider about their loved one, to let them know about this is the person.
That you're looking at. This is not the disease. This is not this, the illness. This is a person and this is who they are. And there have been some times where I've had to have very stern conversations about quality of life, especially with medication management, with thyroid cancer and, Those are conversations that I felt I needed to have.
It was instinctual, but not everybody has that, and so that's why I love to see that first chapter was focused on that because I think a lot of people need to hear It is not only just okay that it's important for them to have this, this goal, especially with new providers or in emergency rooms, for them to be able to show that this isn't just a numbers game, this isn't just another person in a bed, and you give a lot of other, resources on, other people's writings that talk more from the medical side of, caring for the whole person is important, but this is not a age old, discussion that's been having had.
This is something new that has been coming up. And so just you sharing that and feeling the frustration that you convey, is really important because you, like you said, are a person who was Associated with that hospital, sometimes you wore your badge just so that you can put yourself. Always,
Dr Applebaum: always wore my badge.
Always wore my badge to buffer whatever sense of inferiority. Yes. Yeah.
Charlotte Bayala: So to, see and hear that someone in your position still, had this kind of roadblock that you just had to get through it really makes it easier for a caregiver who is not in that position to see it is difficult, but it's difficult for everyone.
It's not fair. It shouldn't be this way. However, it's worth it to use these strategies to make yourself heard. Because you also talk about the language that doctors use,, and used with your dad that you didn't appreciate and the things that you did to kind of set yourself apart by standing behind him or beside him, so that they were talking to him and not to you.
That's not easy to do. So for, people to have those skills that you gave them, suggestions and, and, and basically showing how you did it, can offer them an opportunity to Think about how they can use that in their own lives. So I really appreciate you doing that. And then you, you talked a great length in one of the chapters about emotions, in how it's normal.
To feel those emotions. Can you share? Yeah.
Dr Applebaum: Yeah. Well, you know, I have a clinical service where we focus on emotions, primarily the emotions that family caregivers experience. And often in, clinic, I will hear caregivers judge themselves for having emotions. Yeah. Judge themselves for feeling angry, judge themselves for feeling disgusted.
And the only harmful things , about that is, is the judgment. The emotions we have are normal. In fact, I get so much more concerned when I meet a caregiver who's in a difficult caregiving situation who says to me, Dr. Applebaum, I'm actually feeling just fine. To me, that is a red flag. I get very, very concerned.
You know, it's more appropriate to hear, yeah, I'm feeling distressed and burdened. I'm sinking. I'm hopeless. I'm helpless. I'm isolated. I'm depressed. I'm sad. I'm anxious. I'm traumatized. All those things are real. They're normal. What's important is that, you know, we rarely choose to become caregivers or if we do choose to become caregivers, we don't have choice over the unique circumstances of our caregiving situation.
That's for sure. Yeah. And so inevitably we as caregivers experience many limitations and challenges that lead to difficult emotions. So we all as caregivers experience difficult emotions. I think the beautiful thing here, and this is, linings per se, but, but if we are going to be stuck feeling these negative emotions.
Well, we can learn from them. Every emotion we experience, the good ones and the bad ones, is a messenger. They can teach us something. They can teach us how to live more fully. I'll use anger as an example because anger is an emotion that is so often accompanied by judgment. You know, I shouldn't be feeling angry.
I'm not the patient with cancer. I shouldn't feel angry. I'm still able to travel. He's not. The first thing I want to acknowledge is that it's very important if you feel angry to let that anger out. Don't let that anger out and it stays within us. We become that tea kettle. We're going to burst. And that burst looks different from each one of us for each one of us, but no matter what it looks like, the burst is never a good thing.
So the anger needs to come out. And by that, I don't mean that I'm encouraging you to yell at your care partners. That's not what I'm saying. Okay. But I am saying allow yourself to yell out loud, yell into a pillow, close the car door and yell, or, you know, let the anger out with a therapist, or your best friend, or a family member, someone, get the anger out.
It needs to come out. Yeah. Anger is rarely unidimensional. I'm going to give you an example. I was working with someone who was so angry because her husband was no longer able to help around the house as a result of his cancer treatment and his disease progressing. He wasn't physically strong. He couldn't do the work in the garden he used to do, you know, cleaning, mowing the lawn, taking the trash out, all that stuff.
She was so angry at him. She was so angry because they couldn't travel. They couldn't do the things they once did. She was angry because they couldn't have sex. She was angry because they couldn't be the couple that they once were. In session with Mia, she was sharing this. I, you know, I, I realized that yes, she was angry, but deep down there was something else.
And when she saw her husband, she looked at him. Each time she looked at his frail body, she was grieving. She was sad. She was mourning the loss of the man that she had married and helping her to articulate that and to express the sadness. really eventually allowed that anger to dissipate. So beneath anger, there's often a very deep well of sadness.
And that's what I mean. Emotions are messengers. It is a lot easier for us as humans, for us as caregivers to express anger and to express sadness. Yeah. Badness takes a lot of vulnerability. Yeah. But if you can challenge yourselves, to connect to whatever you're grieving and it doesn't have to be life or death.
We've had as many losses as caregivers every day. Yeah. And to express some of that sadness, you're likely going to find the anger is going to be mitigated and you're going to be able to live life more fully. And that's what I mean. So we don't choose these situations, but if we do eventually feel anger, well, let's use it.
Let's use it to grow. And that's where there is the silver lining, which is that we all do eventually if we do that. You know, develop and grow as humans and emerge from caregiving as stronger, you know, more rounded versions of ourselves. I'm Allison 6. 0 right now, right? Different version than the 2. 0 who was a caregiver, active caregiver.
Charlotte Bayala: Well, and I think that it's really important for people to hear that, It's really beneficial to find a way, a person, a place to voice the things that you're feeling. Oftentimes, caregivers hold on to and really store down deep the things that they're thinking, feeling, their emotions that pop up.
They just try to ignore them and hope that they go away on their own. Mostly because They're, they're pretty heavy emotions. If you find that your husband is diagnosed with cancer, and one of your first thoughts is, how can I live when he dies? Your friend might not actually be prepared or capable or qualified or capable to even just listen, right?
Because everyone that loves you wants to make it better. And sometimes there are things that you can't make better. You have to sit with it being uncomfortable with it to not feel fair. And so I always, I want people to know, as much as I can tell them, as much as I can have them hear it, to find a place where they can share those things.
Now, it might not be comfortable for someone to go to talk therapy or have that accessible to them, but there are support groups, sometimes support groups don't feel right. There are people in your, in your. community. Maybe if you have a place that you go that is spiritual, religious, maybe there's someone there you can talk to.
But to find a place, it might be journaling. For me, it was literally putting it out in the world as a, as a podcast. I don't necessarily advocate for that because that's not the best place to process emotions and things, but find a way To let it out, even if you're talking to yourself in the car, whether it's anger, whether it's sadness, like, just being able to say to yourself, I feel sadness.
Why is that? And you have a whole chapter on mindfulness, which I loved because that is my thing. Um, but to have a lot of times we don't have moments where we take to stop to feel. And if you don't stop to feel, then they really, they're not going to go away. They're just banking up on top of each other.
So having the foresight to you. Like you said, find out what those emotions are trying to tell you. Be okay with it being uncomfortable also. And then not judging yourself for it. It's hard to share sometimes because there's nothing worse, like you said, being vulnerable and being sad, but then to share it with someone who tells you, don't be sad.
Right. So it's really easy for that to backfire. depending on who you choose to share that with. But as you said, being okay with having those emotions, like they all show up for all of us. You are a qualified licensed person to talk about emotions yet you still, like, it doesn't,
Dr Applebaum: I'm not immune. I'm not immune to any of the anxiety, depression, trauma, insomnia, all of it.
I experienced it all. , but the most important thing that I did. was I did not avoid emotions. I allowed myself to feel them and to express them. And that's why I'm sitting here healthy, having a conversation with you. I gone through, I mean, I didn't mention earlier, but my caregiving journey was very much impacted by the fact that, one year after my dad's diagnosis of Lewy body disease, my mother, who was much younger than he died suddenly.
And I discovered her death. And so I had a very significant trauma at that time. I had the awful, you know, responsibility of telling my dad that his wife had died while he was bed bound. So, you know, my journey was one of intense emotions and, I would not have survived it had I not gone to trauma focused therapy and maintain my regular psychotherapy and continue to be in care.
It's not to say that everyone needs that level of care, but I express the emotions and had I not done that, I know I wouldn't be sitting here and that's the most important thing that we can do is just allow the emotions in and to feel them and to express them. Emotions aren't dangerous.
Avoiding them is dangerous. Yeah,
Charlotte Bayala: yeah, definitely. It's never just one really emotion, there's usually a lot tied into it, and so it's a complicated woven mess of jumbled feelings and emotions that, if you're listening to this right now and feel like, It's too big of a problem to talk to someone about.
There are people who are trained, like Dr. Applebaum, who are really there to help. So it is worth the time and energy that it takes to find a good person to talk to, for sure. And
Dr Applebaum: in the book, in the 10th chapter, I provide some resources to help you to find a mental health professional, if that's something you're interested in doing.
Yeah.
Charlotte Bayala: Well, and also in the book, you do talk about, connecting to meaning and purpose in your caregiving. And I, when I first saw this, I was like, oh, here we go. Mm-Hmm. , here's the rose colored glasses. And, but that's not what it was. . I really
Dr Applebaum: appreciate it. Oh yeah. . Yeah. Can, can you tell us more? Yeah.
The, the disclosure, the disclaimer that this is not about turning lemons lemonade. This is not positive psychology, the power of positive thinking. That's not who I am as a therapist or as a person. That's just not helpful. But this is this idea that suffering and meaning can coexist. We as humans have the capacity to experience the depression, anxiety, trauma, insomnia, hopelessness, helplessness, fear, and love, strength.
growth, connectedness, et cetera, et cetera, et cetera. The suffering and the meaning are not mutually exclusive. What this means then in situations in which we suffer and caregiving is one situation of incredible limitations, challenges, and losses, and therefore suffering that we all as humans have the capacity to connect to meaning and purpose.
It's always there. It's just our job to connect to it. And in the book, I explore various routes through which caregivers can remain connected to meaning and purpose and grow through their caregiving experience. I mean, taking myself out of the picture, I've lost count of the number of caregivers who've told me That they had no idea they were so strong until they became a caregiver, you know, caregivers during the height of the pandemic lockdown in New York City, which was quite intense and prolonged, who said to me, this pandemic is nothing compared to taking care of, of, you know, my, my child or my parent, caregivers who said to me, I found my voice.
Because of caregiving that I didn't realize that I was outspoken, but because I've had to communicate with thousands of healthcare professionals at this point and tell his story again and again and again and again, I found my voice and now I'm an outspoken version of myself. I could go on. I won't. But the point is that we all have this capacity and again, it's not about negating suffering, but it's acknowledging that in while we suffer, we also can have the other side of
Charlotte Bayala: experience.
To not limit or deny yourself the other side when there is suffering, because oftentimes people will say to themselves, I don't deserve to enter whatever the thing is, which is a long list of caring for myself or going for walks or, you know, , Really finding myself as a person because of the suffering, because of the work that I've had to do to advocate for my loved one.
Oftentimes I'll hear, I, I can't do things to, prioritize myself to, to focus on myself because I'm not the one that's sick. Yeah. Yeah. Yet, you share a story of a gentleman that you worked with who actually came out a healthier person through his caregiving. , and so, To have a reminder, especially since it was after you've given all these tools and all of these things to consider and, the support and the things to think of.
And you have a like a section for CBT where it's, you know, skills that people don't necessarily have altogether in a book for caregiving. And at the end, you have towards the end of this chapter about. You can make this be something for yourself. You can find the strength in yourself. I think in a different way also than other people, , try to look at it.
I'm like you, I'm not the make lemonade out of lemons type of person. I'm the, the, this really freaking sucks. Yeah. But. Yeah, there, there is also there has to be more, right? So for people to see that and to hear that and to read it is, is so valuable because you give so many different examples on how it's done and how people have done it, that it, it gives more ideas of the, well, just be, be happy and be sad at the same
Dr Applebaum: time.
Yeah. Yeah. I mean, a great, just, you know, a great example of this is to ask yourself the question, who am I? And how would I have answered that question before I became a caregiver? And to think about in what ways can you reconnect to your authentic sense of self? So often we become disconnected from who we are as individuals who are artistic, or we love to travel, or we're funny, or we're athletic, and we can't engage in certain activities because we're stuck at the bedside in the hospital, because we can't leave the bedside, because God forbid we do that.
Team's going to, you know, we're going to miss the team reconsider. Well, how can you, despite your limitations, reconnect to those parts of yourself? You know, if you're someone who enjoys nature, can you at some point leave the hospital and feel the sunshine on your skin? Right. You know, if you're someone who's really artistic or into music, can you put your Put on music, put on your earbuds and close your eyes and just for a few minutes, do some deep breathing and get transported to a different time and place when you were listening to your favorite band.
Right. These are simple things that we can do. It's not again, you know, turning, turning those limits, lemonade, but it's saying that we actually have tools that we can use to help remain connected to who we are despite the suffering around us.
Charlotte Bayala: Yes. Yes. Oh my goodness. So we could talk for, for hours. Um. Days.
In days, we could have 20 episodes, one for each chapter and more, um, but I'd like to leave it with advice that you'd love to give to the caregiver that's listening right now, whether they're new caregivers or have been caregivers for some time, um, what would you like to leave them with?
Dr Applebaum: I'll give you.
Maybe two pieces of advice, and one, I'm sure everyone's heard this before, but I'm going to say it again, which is that none of us can do this alone. We cannot do this alone. Whatever your caregiving situation is, I want to encourage you to ask for help. I want you to delegate where you can. I want you to write out all of your responsibilities, those that are visible and those that are invisible and see what can be delegated.
And when you ask for help, my other piece of advice is to be as specific as possible. Yes. And people ask, what can I do to help you? And if you don't know what to say in that moment, say, I'm sorry. I don't know, but I know I'm going to need your help. So stay tuned. I'm going to get back to you and then you're going to go to your list and you're going to see which one of these can be delegated.
You know, when I was taking care of my dad, and going through everything I was going through while, you know, leading this program and working full time, some things that were easily delegated were meal preparation. Having friends be able to help with, with food and food delivery. That was really helpful to me.
At one point having financial support was, was really, I was desperately needed and accepting offers of financial support. While it wasn't easy for me, it was one of the most important things that I ever did. And I delegated. There was no way that I could have taken care of my dad on my own. I physically couldn't have done it and I emotionally couldn't have done it.
And, and a lot of what I focus on in the seventh chapter of the book is on the direct care workforce and home health aides and, my reliance and our reliance on this team of home health aides who really became, you know, many ways, part of our family and part of our whole care experience. But, but just to circle back is, is the idea that.
None of us should have to do this alone. And even if you are an isolated primary caregiver, as I felt I was, there are ways in which you can expand your network of care. And simply asking for help is the best way to do that. Yeah.
Charlotte Bayala: And sometimes the most difficult thing for caregivers to do. Exactly.
Exactly. Well, thank you so much, Dr. Applebaum for being on here with us. I really appreciate
Dr Applebaum: it. Oh my gosh. It's my pleasure. Thank you for having me. And I'm grateful to hear that, that you found the book as helpful as you did.
Charlotte Bayala: Yes. Yes. Thank you so much.
Thanks for listening.
You can find Dr Applebaum online and order her book at https://allisonapplebaum.com/stand-by-me/
