Heart and Hustle: The Caregiver's Journey

Caregiving can carry a heavy emotional, physical, and financial toll. Dr. Allison Applebaum, director of the Steven S. Elbaum Family Center for Caregiving, discusses the importance of supporting those who care for others.

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Transcript

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Stephen Calabria: [00:00:00] From the Mount Sinai Health System in New York City, this is Road to Resilience, a podcast about facing adversity. I'm your host, Stephen Calabria's, director of podcasting.

On this episode, we welcome Allison Applebaum, PhD. Dr. Applebaum is the director of the Stephen S. Elbaum Family Center for Caregiving and a professor of Geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai.

Dr. Applebaum discusses the challenges and potential benefits of caregiving, the social and structural inequities that shape the experiences of caregivers, and how challenging times provide opportunities to find meaning, purpose, and resilience. We're honored to welcome Dr. Allison Applebaum on the program.

Alison Applebaum, welcome to Road to Resilience.

Allison Applebaum: Thank you so much for having me.

Stephen Calabria: Let's start with a broad question. Could you tell us what it is that you do here at Mount Sinai? 

Allison Applebaum: Sure. So I lead our new Stephen s Alba Family Center for Caregiving in the Brookdale Department of Geriatrics and Palliative Medicine.[00:01:00] 

And this is a comprehensive program that really seeks to improve the quality of life and experience and care of family caregivers of patients, both within the Mount Sinai health system and caregivers nationally. 

Stephen Calabria: How do you even define caregiving and who do you see as caregivers in today's healthcare landscape?

Allison Applebaum: Sure. So caregivers are the parents, partners, children, siblings, friends, neighbors, colleagues chosen family who are providing care for individuals, living with chronic and life limiting illnesses, disabilities, and mental health challenges.

They can be providing support that ranges from the physical and emotional to spiritual and existential and financial, any type of support counts in terms of being a caregiver.

Stephen Calabria: And we'll stipulate there's a clear difference between a caregiver and a caretaker, right? 

Allison Applebaum: 100%. I have a very strong reaction to the word caretaker, which has historically been inappropriately used to refer to family caregivers, but really refers to someone who oversees.

Property or land or animals, and that's not what we as [00:02:00] family caregivers are doing. And then I think more existentially when we think about caregiving, it's the emphasis on the giving of oneself versus taking of anything. 

Stephen Calabria: Taking care of someone versus giving care to someone. So you've said before that caregiving is a public health issue. What do you mean by that, and why is it so important to name it as such?

Allison Applebaum: There are at least 53 million caregivers in the United States today. We're waiting this month in July of 2025 for updated numbers from the nationals for caregiving. My guess is the number is gonna be closer to 70 million. This is a role that touches everyone.

It's a role to use the words of former First Lady Rosan Carter. All of us were. Are or will be caregivers or need a caregiver at some point in our lives. It's a role that deeply changes who we are and the trajectory for our life moving forward.

In many ways, our caregiving status is a social determinant of health. It's something that is going to impact so many of us.

And so it's very critical, I think for us to not just consider this on an individual level, but the population [00:03:00] level, and for us to begin to really track caregiving status so we can have a better understanding of the impact on us as communities. 

Stephen Calabria: Now, what data do we have on who is a caregiver? Who becomes a caregiver? Can you break it down by age, demographics? How does it work? 

Allison Applebaum: Sure, there's lots of great data from the National Alliance for Caregiving on this. We know that caregivers are on average, I believe, in their fifties, but we also know that there's a growing number of adolescent and young adult caregivers.

So 24% of caregivers are adolescent and young adults up to age 34. And I highlight this population, not just because it's a group that is growing. These are individuals for whom the caregiving responsibilities place very significant impediments to development in the areas of relationships and education and employment and family building.

So caregiving places an undue burden or a unique challenge for those who are adolescents and young adults. And also, I should say, we are seeing an increasing number of children stepping into the caregiving role for parents and grandparents.

But when you think about adolescents and young [00:04:00] adults and young adulthood, this is a period when one should hypothetically be developing their sense of identity, pursuing education, pursuing employment, maybe building relationships, and even thinking of starting families.

Caregiving usually presents significant impediments to growth in all of these areas. So this is a group of caregivers who are very much in need of support. 

Stephen Calabria: And for a child to have to assume this role, while they themselves are grappling with their own developing personalities, it must give I don't wanna use the word trauma, but traumatic events.

Allison Applebaum: I would say traumatic events across the board and across the age spectrum certainly uniquely challenging experiences for children and adolescent and young adults, but the word trauma is more and more being recognized as part of caregiving that many caregivers experience events that are traumatic themselves.

For example, riding in an ambulance can be traumatic. Taking a care partner to the emergency room and seeing them receiving emergency care can be traumatic. A [00:05:00] child witnessing a grandparent have a seizure, certainly traumatic.

And I think there's a growing recognition of post-traumatic stress disorder or post-traumatic stress symptoms, which is often only associated or often associated with folks who, veterans of wars who've come back from combat.

But we are seeing increased rates of post-traumatic stress disorder and symptoms in caregivers themselves. And what's really important is that for many of these caregivers. The traumas occur in the settings where they must remain at home with patients, and so they can't necessarily escape those settings.

Stephen Calabria: This is one of those areas where resilience has to be displayed by essentially everyone involved in the caregivers, the patients by the clinical teams. In your work, how have you seen caregiving as both challenging and cultivating? A person's resilience. 

Allison Applebaum: So when I speak about caregiving and specifically the emotional experience of caregiving, I often talk about the concurrence of meaning and suffering. The idea that caregiving is an experience of [00:06:00] profound suffering.

Caregivers face challenges and limitations and losses every day, and yet at the same time. Caregiving provides an opportunity for caregivers to grow, to develop new strengths, to learn new things about themselves.

And I often reflect back on the clinical work I've done over the past 15 years, and I have lost track of the number of caregivers who've said to me, Dr. Applebaum, I had no idea I was so strong.

Or, I used to be so shy, but I have become outspoken because I had to find my voice to speak up with all of these medical teams. And I would not have done that had I not become a caregiver.

The opportunity to connect to meaning and purpose, to grow, to develop resilience, to experience benefit finding or post-traumatic growth. All of the phrases I'm using are BA basically getting at the same thing.

The idea of suffering and meaning can happen at the same time. It's certainly possible for all caregivers, but I also wanna acknowledge that it's much more difficult to hook into those strengths and connect to meaning and purpose if one's basic needs as [00:07:00] a caregiver are not being mad. That's why support is so very important. 

Stephen Calabria: What is an example of a time when a person's basic needs aren't met? 

Allison Applebaum: For example, if you're unable to put food on the table for the person you're taking care of, or you're having to decide between paying for his or her medications and putting food on the table, if you're one of the too many caregivers in the country right now who are going to be forced to choose between paid employment and caregiving at home.

That's a situation where it might be very difficult to connect to some of this other good stuff. Not impossible, but much more difficult. 

Stephen Calabria: You've studied anticipatory grief and the psychological burden of caregivers, especially in oncological settings. How do caregivers build meaning and strength in the face of such uncertainty and in many cases, loss?

Allison Applebaum: Sure. So first it's important to acknowledge that almost every caregiver will experience some fear of death, whether their care partner, the [00:08:00] patient they're taking care of is living with an advanced non-small cell lung cancer or an early stage breast cancer or any other illness. That thought comes up for every caregiver.

That's just a natural thought. Certainly those thoughts become more realistic and more valid if a care partner has a life limiting illness, has a progressive dementia and advanced cancer diagnosis for which there's no cure.

But I just wanna acknowledge right off the bat that those thoughts are actually quite normal for all caregivers. Caregivers are then tasked with grappling with two realities. Making the most of the present time that they have with a care partner, while also recognizing that there will possibly be a future in which that care partner is not going to be present.

And one of the greatest ways that caregivers can maximize this time and connect to meaning and purpose and develop resilience in the context of that anticipatory grief is to communicate.

This, in fact, is one of the most important strategies that all caregivers should enact. And by communication I mean having very [00:09:00] open, honest, vulnerable, and yes, very difficult. Sometimes conversations with care partners about their goals of care, what's important to them, what their hopes are for the future and what those care partners hope for those caregivers in the future at a time when they might not be there.

I think too many caregivers suffer in silence. They're fearful of discussing death with their care partner and ultimately doing so prevents both the caregiver and patient from actually expressing a lot of really beautiful emotions. 

Stephen Calabria: Also, I imagine that there's an element of denial involved on the part of both the caregiver and the care receiver. I should Or what is the care partner. The care partner, thank you. 

Allison Applebaum: Yeah. 

Stephen Calabria: On behalf of the care partner. How do you tackle that? 

Allison Applebaum: Yeah. So interestingly, I had conducted a series of studies, back when I was at Memorial s Stone Kettering Cancer Center with diads, with patients with brain tumors, malignant brain tumors, and their family caregivers.

And we asked patients and caregivers separately what they understood about their [00:10:00] prognosis, was their disease curable, were the treatments available, et cetera, and across the board, what we found were the caregivers were overwhelmingly much more realistic in the reporting about patient's prognosis.

They did not shy away from saying, my husband is likely going to die of this tumor in five years, or, we know that the disease is incurable. Whereas overwhelmingly patients were actually expressing more denial.

Now, whether or not they were truly in denial or in that moment not willing to share vulnerably the fears they might have, we don't know. But certainly that finding has been replicated often in the literature.

And so actually I would say, given both the research and my clinical experience, denial is not so much the challenge we hear in caregivers. What we hear is, I am really scared of bringing this up, because he may be in denial, or I might burst his bubble of hope, and if I burst his bubble of hope, then the disease is gonna kill him.

Stephen Calabria: You don't wanna burst [00:11:00] the person's bubble. You also don't want to give false hope. Is that something that you have experienced in caregivers as well? 

Allison Applebaum: Certainly not wanting to give false hope. I think it's important to consider, what does hope mean? Hope may not be hope for a cure or hope for a magical treatment to come down the pipeline, but hope could be for three months of quality of life or the ability to spend some time outside in the sunshine.

I took care of my dad for a decade. He had Lewy body disease, which is a progressive neurodegenerative disease, that takes some of the highlights of Parkinson's disease and Alzheimer's disease. And you throw in a little psychosis and you get Lewy body disease.

So it's a triple whammy. But what I wanna share is that what my dad considered to be quality of life at the beginning of his illness, or when it was diagnosed in 2013, was dramatically different from that in 2019, the year he died.

And so I always reflect on that when I think about hope. In 2019, hope for him was to sit outside in the sunshine and to drink a favorite drink and to have a [00:12:00] conversation, and that was no less meaningful than the hope he had in 2013 to meet his first grandson.

So I think when we think about hope, it has to be very personal and unique and specific to each of us as patients and caregivers.

Stephen Calabria: So many people think of hope as there is not a definite endpoint to this. This is not going to end anytime soon, and we just need to hope that things will get better. But in reality, it can be far more truncated and realistic than that.

Allison Applebaum: Possibly. 

Stephen Calabria: Now there are social and structural inequities that determine who becomes a caregiver and at what cost.

Unpaid or undersupported caregiving is often born disproportionately by marginalized communities who may have fewer resources, less access to healthcare or rest, and less general acknowledgement of their efforts.

In fact, caregiving often falls most heavily on women, people of color, and family members without formal training. How does this [00:13:00] dynamic shape the emotional labor and resilience required of caregivers? 

Allison Applebaum: Sure. What we know from the National Alliance for Caregiving is that nearly two thirds of caregivers feel like they do not have a choice in stepping into the caregiving role. And this is most common among caregivers who are women and are women of color.

But that predominantly that, that, that sense of having a choice or not is really a big driver in the experience of caregiving. It's also important to acknowledge that caregiving is culturally constructed.

There are some cultures wherein it is expected that you will take care of your parents or your grandparents and live in a multi-generational home. And so for those individuals, caregiving is not often thought of or experienced as such a burden as it is for those of us who grew up in other environments and cultures where that wasn't the norm.

And so that's an important piece as well, is what is expected and what is not. I will say what's interesting to me, and this is just anecdotal, this is not scientific, so I wanna preface it with that, but, as I led the [00:14:00] caregivers clinic at Memorial Sloane Kettering Cancer Center for 15 years and worked with thousands of caregivers, oftentimes what I experienced in listening to some of the men who came into our clinic as caregivers is they received significantly greater praise.

From their social support network and stepping into the caregiving role in part because, for example, perhaps they felt that it was non-normative for them to be caregivers, whereas that was something I rarely heard from any of the female caregivers, the women in our practice. 

Stephen Calabria: As though there is a societal expectation that women are going to be the more nurturing and caring ones and expectations, for men are set so low that, hey, great job you showed up. 

Allison Applebaum: Yeah. It's a little bleak to say it that way, but, Yeah in some regards. Absolutely. 

Stephen Calabria: Regardless of the caregiver, there's also often a financial strain born of taking care of a loved one. How does it most often manifest? 

Allison Applebaum: Yeah, this is a really hot topic right now. Just to put this in perspective, [00:15:00] nearly one quarter of caregivers in the United States today report high financial strain and nearly one fifth will go into poverty as a result of caregiving.

And at the same time, in 2023, it was estimated that the value of the efforts of caregivers, so if we were to put a dollar value on all that we do as family caregivers. It would account for $600 billion and there was actually a report that came out last month from Columbia citing something closer to $830 billion.

So there is a dramatic disconnect between the value of our efforts as family caregivers. And the financial toxicity and costs that we experience as a result. So how does that affect folks? Exactly. Like I just said, it can actually lead to poverty.

Difficulty putting food on the table, a difficulty to put fi finances to other pursuits of life and certainly the financial. Implications of caregiving, last for a lifetime and often generationally as well.

So one thing that we try to do here in our new center for Caregiving when we meet with caregivers is evaluate, how they're [00:16:00] doing in terms of their financial wellbeing and their concerns they have, and connect them with resources, social work.

For example, if they need assistance with services that could be provided at lower cost.

Stephen Calabria: With healthcare and medical bills being statistically the most common driver of bankruptcy, it I guess makes sense that this is also a part of the equation. What are some of the ways we can better recognize value and protect informal caregivers, especially those who aren't paid or even acknowledged by the system?

Allison Applebaum: So first of all, I'm going to challenge you and everyone listening to get rid of the word informal. So the phrase informal caregiving is one that I inaccurately used, years ago in my research. I had seen it in the dementia caregiving literature.

But I realized, both in doing this work professionally and stepping into the caregiving role myself, that there's absolutely nothing informal about what we as family and friend caregivers are doing. So I'm on a personal mission to get rid of this phrase, so thank you for giving me that moment.

Stephen Calabria: It was totally done on [00:17:00] purpose.

Allison Applebaum: It was not done on purpose. What was the question again? 

Stephen Calabria: What are some of the ways we can better recognize value and protect such individuals? 

Allison Applebaum: Yeah, so, so I think the first is recognizing, right? There's so many caregivers, number one, who are not recognized as caregivers or don't self-identify as caregivers. We have in this country what's called the caregiver Advise Record Enable Act.

The Care Act currently passed in 45 states and territories. It requires hospitals to do three things, to document the name and contact information of caregivers and the records of patients when patients come to the hospital, to let caregivers know when patients are gonna be transferred or discharged, and very importantly, to provide caregivers with training and education so that they know how to take care of their loved ones at home.

Now, the Care Act is not consistently implemented, and that's for a variety of reasons, but the Care Act is an incredible opportunity that I think we can take better advantage of. It's an opportunity not just to identify caregivers and document their name and information, but we can take it a step further.

We can actually give those caregivers [00:18:00] a screening tool. Evaluate how they're doing in terms of their distress, their caregiver burden, their unmet needs. Can they put food on the table? Do they, can they get the medications? Do they have any other help? And based on that distress screening, we can immediately triage them to appropriate levels of support.

And if we were to start to do this early interve intervention, as I look at it. We likely can begin to prevent so much of the PTSD, that post-traumatic stress disorder, the anxiety and depression we see, I didn't mention this earlier, but diagnostic rates of anxiety, depression, and yes, PTSD we're seeing are higher in caregivers than the patients for whom they provide care.

With early intervention, we can prevent this. So one of my goals is really to shine a bright spotlight on caregivers as early as possible where we have the greatest opportunity to intervene. 

Stephen Calabria: I imagine that gets difficult though, when you get into what is even the definition of a caregiver? When the care partner has a chronic [00:19:00] illness versus a fatal illness, does a person have to have been sick for six months, a year? Is this a part of the equation? 

Allison Applebaum: I think that doesn't matter how long that patient, that care partner, has been in the system, whether it's for one day or one week, or one year or a decade. That person likely is going to need some assistance from a caregiver. And so whether it's however long that is, I think that's the opportunity to at least begin this process.

It's often the case where, patients care partners will begin a medical journey and maybe have sporadic medical appointments. Within a year become longer hospitalizations or longer treatments wherein caregivers are really a big part of the whole process.

So I think the earlier we can identify caregivers and at least document their information and maybe screen them for distress, the better able we're gonna be able to provide them with the skills so that they can weather whatever's gonna happen in the future.

Stephen Calabria: What kinds of interventions have you seen that actually work to support caregiver resilience? Are there specific therapeutic, [00:20:00] structural, or policy innovations that give you hope? 

Allison Applebaum: I do have a lot of hope despite everything that's happening right now, and I have a lot of hope because the state of caregiving science, the field of supporting caregivers and developing targeted psychotherapies to support caregivers has been moving very quickly.

So we have many empirically supported treatments. These are treatments we know work that can address various areas of caregiver distress, such as cognitive behavioral therapy for caregivers, meaning centered psychotherapy for caregivers, which is something I've developed. Communication skills training for caregivers.

There are hundreds right now of randomized control trials evaluating various psychotherapies for caregivers, which are showing really great promise and not only improving caregiver wellbeing, anxiety, depression, trauma, preparedness for caregiving, but are also showing downstream benefits to the patients for whom caregivers provide care.

So we know that when caregivers feel supported, when their anxiety and depression [00:21:00] are mitigated. We're able to take better care of patients and it translates into better patient outcomes, improve patient quality of life, lower patient's symptom burden, re reduced hospitalizations, shorter hospitalizations, and even reduced mortality.

So I feel very hopeful in terms of where the sciences, now certainly there's a lot happening in our public policy landscape, but I would say that the development and dissemination of caregiver support programs is a bipartisan issue that is not contingent on anything currently in the public policy.

Stephen Calabria: You spoke earlier about how caregivers often neglect their own financial health, but you've also written about how caregivers can neglect even their physical health. What are some examples of that? 

Allison Applebaum: Sure. When you're balancing, I've described it as the caregiving house of cards, and you're trying to take care of a care partner in every possible way.

It's often very difficult to attend to your own needs. I'm gonna use myself as an example. This is something I have written about before. But as I was taking care of my father for years and I was [00:22:00] also working full-time and I was quite burnt out. I had the experience where I had taken him to the hospital.

He had come down with a urinary tract infection, which was the most common driver of our trips to the ERs. And during that er visit between us being in the ER and being hospitalized for a few days, I actually picked up an infection myself. I ended up having a cellulitis infection in my arm.

Getting hospitalized the week later in the same via the same emergency room where I brought my dad. What we realized is that because I had been so sleep deprived and I had been so run down from months of caregiving without any real respite myself, that I was much more vulnerable to actually having a full blown cellulitis infection that I would, had, would've been, had I not been so rundown.

So I, I use myself as a guinea pig example, and certainly that was a wake up call for me. Many caregivers have come to our clinical practice sharing that they have their own concerns about, noticing some changes in terms of their cardiovascular functioning, concern about heart disease, [00:23:00] concern about new migraines that have come on, for example.

And so, we certainly encourage caregivers to attend to their own health and to prioritize those appointments just as they would appointment for their care partner. But it's certainly not easy, especially if you're in a crisis. 

Stephen Calabria: Having been in this position myself, I also imagine some of the reasons people give are, I just didn't have enough time to care for myself. Or if the choice is between exercising and caring for my parent, I don't really have a choice. What would you say to them? 

Allison Applebaum: I think it's important for us to redefine what self-care might look like as a caregiver. So you know, we might not have the luxury to go to the gym once, twice, or three times a week, or even more, as we would if we're not taking care of someone else.

We might not have the luxury to travel. We might not have the luxury to turn our phone off for a few hours, but can we take a walk around the block? Can we put our phone down for 10 minutes? Can we make a point to have a conversation with a close friend?

Can we cook our favorite meal? I think in [00:24:00] terms of self-care, it's really thinking about what are those smaller things that we can do that can provide us with briefer moments of respite, but replenish our soul nonetheless.

And I think that's really important because often what happens for caregivers is they feel demoralized when they're unable to do the things that they want to. We used to do and want to do, but can't, and then it adds to their burden.

And so what I like to do is empower caregivers to think creatively about what can you do right now? I used the example that when I was taking care of my dad and stuck in the hospital and sleeping in the hospital, his hospital bed made a great ballet bar for me.

So I had a first career as a professional ballet dancer, and I realized that when I was stuck in the hospital, I could give myself a ballet bar with his hospital bed. Now was that as good as being in the studio and flying across the floor? Absolutely not.

But did that help to provide me with a sense of groundedness and peace that I needed? 100%. 

Stephen Calabria: Are there any caregivers you've encountered over the years that altered your perception of what caregiving is and means?

Allison Applebaum: It's [00:25:00] such a good question. I think I and others doing this work often are focused on the person we would identify as the quote unquote primary caregiver.

The person who's taking the majority of responsibility for getting a care partner into the hospital, getting them to take their medications, getting them to doctor's appointments, helping them with their activities of daily living.

But I think it's important to consider that there's often a network of care and there are individuals who are often a little bit in the shadows.

Like siblings of individuals who are medically ill, who are the identified patient, and the parent is the caregiver, but the sibling is also caregiver as well, because they're not only providing necessarily emotional support to their sibling who's sick, but oftentimes they're navigating new dynamics within the family.

And so that's something that has really come up for me in my clinical practice is recognizing these other groups of caregivers who may not be the focus of our research, and we may not immediately think of as caregivers, but are very much part of the care network and very much in need of support.

Stephen Calabria: What would you say to someone who's [00:26:00] listening, who's quietly carrying the weight of caregiving right now and doesn't know where to turn? 

Allison Applebaum: Number one, no one can do this alone, so it's really important if you are in that position to really take a look at who is in your network, who are the people that you can ask for help, to whom can you delegate any of your caregiving tasks?

Number two, it's thinking about what are the important conversations I have yet to have with my care partner? For example, do we know how we're gonna pay for care? Do I even know what type of insurance they have?

Do I understand what my care partner values in terms of their goals of care, their quality of life, or what type of treatment they wanna have?

So anyone new in the role, I would really encourage you not only to take a look at your network and see who you can invite in to provide some support so you don't do this alone, but also initiate some very important conversations with your care partner. 

Stephen Calabria: That was it for my questions. Is there anything else you wanted to say?

Allison Applebaum: Nothing, except for gratitude for your shine and a spotlight on caregiving. I think that we need to have [00:27:00] more of these conversations. I think that giving this light to caregivers really gives others permission to identify as a caregiver.

I think many folks will say, well, I am just the daughter or the son or the wife or the husband, or I'm the parent. I'm doing what's expected of me.

But I think helping folks to conceptualize what they are doing as this incredible $600 billion labor of love is very powerful. And I think the sooner we can do that, the sooner we're gonna be better able to support caregivers and help them to experience some of that meaning, the purpose, the growth, the resilience.

Stephen Calabria: Dr. Allison Applebaum, thank you for coming on Road to Resilience. 

Allison Applebaum: Thanks for having me.

Stephen Calabria: Thanks again to Dr. Allison Applebaum for her time and expertise. That's all for this episode of Road to Resilience. If you enjoyed it, please rate review and subscribe to our podcast on your favorite podcast platform.

Want to get in touch with the show or suggest an idea for a future episode? Email us at podcast@mountsinai.org.

Road Resilience is a production of the health system. [00:28:00] It's produced by me, Stephen Calabria, and our executive producer Lucia Lee. From all of us here at Mount Sinai, thanks for listening and we'll catch you next time.