Advice and Support for Cancer Caregivers

Dr. Diane Reidy-Lagunes:

Caregivers. They're the unsung heroes in the world of healthcare. It's estimated that about 53 million Americans serve as caregivers. And as our guest today points out, caregivers are the long-term care system in the United States. They play a crucial role, often serving as the eyes, ears, and voice for the patient to ensure their wellbeing. Yet caregivers often lack support, and many find it challenging to speak openly about the struggles and emotions involved. Well, today we're going to talk about it.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to “Cancer Straight Talk.” We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcast.

Today we are joined by clinical psychologist, Dr. Allison Applebaum. Allison is the founding director of the Caregivers Clinic here at MSK. She's also the daughter of the late legendary musician, Stanley Applebaum, who's known for composing many classics like "Stand By Me," which is also the title of her new book. "Stand By Me" is a valuable guide to navigating modern meaningful caregiving. It draws on her firsthand experience of being a primary caregiver for her father in the last six years of his life. "Stand By Me" offers insight, guidance and comfort to family and friends, our partners in care. Allison, welcome to the show.

Dr. Allison Applebaum:

Thank you so much for having me.

Dr. Diane Reidy-Lagunes:

Allison, here you are a clinician focusing in this area, and then you become the caregiver. In fact, you powerfully described that moment when you realized you were going to be the caregiver for your dad. Can you explain how that transpired?

Dr. Allison Applebaum:

Absolutely. So I had already begun our Caregivers Clinic in early 2011, and in the winter of 2011, my dad had a car accident. He was in his late eighties, and he had lived up until that point with minor medical problems. But it turns out that he was going into heart failure while driving down the New Jersey turnpike. He miraculously walked away from that accident, but it was a turning point for our family and for us to realize, of course, his medical problems were increasing, and I was the one to receive that phone call and I was identified as the family caregiver in that moment. It was very clear to me that my life trajectory was now going to change.

Dr. Diane Reidy-Lagunes:

Yeah. We all could understand the emotions and terror you must have felt when you got that call. Like you said, that was the turning point.

Dr. Allison Applebaum:

Exactly.

Dr. Diane Reidy-Lagunes:

I just absolutely love your book. You share so many pearls of wisdom, but can you provide to our listeners some practical advice on how to navigate the healthcare system, which is so at times overwhelming and daunting?

Dr. Allison Applebaum:

Most broadly, I would say to speak up. That means asking questions of the medical team so that you and your care partner understand the information that's been given to you. Caregivers are increasingly being asked to take on responsibilities that were once those assumed only by trained healthcare professionals, and too frequently without training or education.

In fact, there is actually a push right now in our country through what's called the Caregiver Advise Record Enable Act – the CARE Act – that says that caregivers should actually get training before a patient's discharged from the hospital. That CARE Act is passed in 45 states and territories, but it's not consistently implemented.

So one practical tip for caregivers is, before a care partner is discharged, to ask a nurse or other member of the medical team to demonstrate the tasks they're going to have to take care of at home so that they can feel confident and competent to do so. And similarly, to ask any visiting nurses who might come to the home post-discharge to demonstrate those skills, and really to look at every one of those visiting nurse visits as an opportunity for you to get the skills that you need.

And when I say speak up, I also mean speaking up with your care partner. I encourage caregivers to open conversations about advanced care planning. In the book, I talk about some communication skills that can help us to have those conversations, which are overwhelming even for those of us who are the most seasoned conversationalists, I should say.

Dr. Diane Reidy-Lagunes:

I love the analogy that caregivers are this house of cards, right? Like all of a sudden, we're supposed to be nurse, lawyer, social worker, case manager, and it’s just completely overwhelming, so I couldn't agree more. Try to make sure that you are speaking up and you're saying, “Wait, I'm supposed to do that? How am I supposed to do that?” I think those are vital, important lessons that we all need to better understand.

Along those lines, caregivers certainly feel a lot of emotions and sometimes they're a little bit afraid to talk about those emotions, whether it's anger, frustration, a feeling of uncertainty, complete lack of control. How do you address that when speaking to your patients about these issues and emotions that are real and valid?

Dr. Allison Applebaum:

I feel like I'm on a personal mission to normalize all of these emotions: the anger, the resentment, the disgust, the guilt, all these feelings that are so normal that we as humans experience. And too often I hear in clinic caregivers judging themselves for having those emotions, and that itself is completely unhelpful. So I do a lot of normalizing of emotions.

Every caregiver has every right to be angry. There are so many challenges and losses that come with caregiving. There's so much challenge around not being able to plan for the next year or month or week or even hour.

But it's also realizing that every emotion we have is a messenger. Every emotional experience we have is going to teach us something. There's a message in there. And so with anger, for example, so often beneath anger, there's a very, very deep well of sadness. It is a lot easier to express anger than it is to express sadness.

I'm thinking of a patient I saw years ago – I think I referenced her in the book – she was so angry at her husband because he could no longer take care of the house in the way that he once did, do the chores he once did. He was no longer able to travel. They weren't able to socialize because of his illness and treatment. She was so angry at him. But in conversation with me in our sessions, what became very clear was deep down, she was grieving the loss of the man she married, this robust man who could do all of these things. And once we identified that grief and that sadness, and she was able to express some of that in session with me and then outside of session, her anger then diminished over time. And so I think it's so important to consider what's deep down when we feel these emotions, and what can we do about it?

Dr. Diane Reidy-Lagunes:

I hope it's okay, I'm going to ask you about the one anecdote you shared in the book that I just thought was so incredibly powerful where you were taking care of your dad and it got to a moment that his home health aide had left and he had an accident in his diaper. Could you share that? I just think it really hit home on the emotions that both the caregiver and the patient feel, and yet we don't talk about it.

Dr. Allison Applebaum:

Thank you for asking this question. Part of why I wrote about this is I really want us to actually have more dialogue around this and around the emotion of disgust.

So my dad at the time was bed-bound and he was staying in my apartment. The home health aide left and my dad realized that he was going to have a bowel movement. We realized together that lying in a dirty diaper overnight, where feces could get into an open sacral bedsore, would potentially lead to a life-threatening event. There was no choice here. We had to change his diaper.

And I should say my father was 6' 1", not overweight, but he was a large man, and I had no idea how I was physically going to be able to do this. But even more importantly, this was a boundary that my dad and I had really tried not to cross, and we wanted to preserve his dignity in every way possible. We wanted to preserve our dynamic as father and daughter, and certainly this was something I never wanted to do. I also didn't really know how to do it and had always witnessed the hospital aids doing it in pairs, and I realized that it's because it's such a physically complicated task to do. My dad was really upset that I had to take on this responsibility, but then we agreed that I had to, and I did.

And afterwards, after this was over, I remember going into my living room – my dad was in the bedroom – and I started to cry for several reasons. One is that no daughter ever wants to clean feces out of their father's genital area. No matter how close a relationship is, that's just not something you want to do. And number two, I felt disgust, understandably, because I was doing this one task that was literally disgusting. And then I thought to myself, “Well, how dare I feel disgust? A year ago, this man was in a coma, but here he is in your bed, tearful, but loving you and present.”

And so I really learned in that moment, number one, disgust is normal. We as caregivers do things that are disgusting, whether it's changing a diaper, changing a colostomy bag, changing wound dressings with a wound that has a strong odor. What's not helpful is that judgment of myself.

That night I remember texting with a close friend, and she said to me how incredible it was that I had done that. And moving forward, I always keep that in mind: when we feel disgust, well, that's a great opportunity to realize that we have likely just done one of the most difficult caregiving tasks we will ever do. And to internalize: what would a best friend say to you if they could witness you doing this thing? Would they get angry at you for feeling disgust? Or would they say, “Of course you feel this way,” and to normalize it?

So often in clinic I'll hear a similar judgment of feelings. “I feel angry, but I shouldn't feel angry. I shouldn't feel resentment. I shouldn’t feel disgusted.” And my response is always, “No, no, no, no. You absolutely should feel anger, resentment, disgust, etc. These feelings are normal.” I get more concerned if I don't hear them.

Dr. Diane Reidy-Lagunes:

Absolutely. I do think that caregivers go through this and think they're so alone, and they're so overwhelmed. So many caregivers out there are experiencing similar situations where they're like, “Gosh, why am I in this moment?” It just really resonated as an example that I think many people could learn from.

I think along those lines, there's also a sense of guilt for those that may be coming to the end. It was such a struggle for so many reasons, and they actually feel a guilt that there's a little bit of relief. So how do you let people, again, go back to those emotions, recognize what they're feeling, and address that?

Dr. Allison Applebaum:

It's so normal to feel that, especially if a care partner is coming to the end of their life. And I certainly felt this as I witnessed my dad in his last months and weeks, and this feeling of recognition that at some point in the near future I might be able to prioritize my own needs. And that feeling and that thought is oftentimes accompanied by this guilt that you referenced.

Caregivers are experts at guilt. But in reality, when we feel guilt, the person that we are about to let down is not our care partner. It's actually ourself. And so guilt is a really beautiful red flag that tells us that we've been neglecting our own needs. It's telling us we're going in the wrong direction. We need to pivot and to consider in what way can we meet our needs.

And so in this scenario that you bring up, as patients and care partners face end of life, and caregivers are realizing that at some point soon they might actually not have all these responsibilities – and with that thought might come relief, and then the judgment, which is guilt – the response is to say, “Well, you've done such an incredible job in taking care of your care partner. This has been an ultra-marathon. This wasn't just a few days or weeks. It was likely months, years, or even decades. And yes, it's going to be terribly sad, but there's going to be the opportunity for you finally to refocus your energy around yourself, and that's actually a really, really powerful and important step.”

Dr. Diane Reidy-Lagunes:

Yeah, absolutely. And I think you use the term “cognitive restructuring” a lot in the book. Could you talk to me about how you have conversations with your patients, and exercises you may give to teach them about that “cognitive restructuring,” and maybe give us other examples of that?

Dr. Allison Applebaum:

So this phrase, “cognitive restructuring” – for those of you who are not familiar, and I expect most aren't – this is a term that comes from cognitive behavioral therapy, which is really the gold standard in addressing anxiety and depression, and really powerful in helping us support all of us as humans, not just as patients or caregivers.

One of the ideas at the heart of this work is that it's not a situation that causes our emotional experience, but what we think of in this situation that causes the emotional experience, which means that if we can adjust our thinking, even in circumstances where we can't change the environment, we actually can have an effect on our emotional experience.

I illustrate this with two women that I worked with early in grad school. These were individuals living with non-small cell lung cancer. I was working on the seventh floor at Mass General Hospital, and both women had walked up the seven flights of stairs to my office. One woman came in and she was out of breath, and she said to me, "I'm out of breath, but oh my gosh, I did it. I got here. I had the stamina to make it to this appointment. I'm so excited. I couldn't have done this a year ago when I was in treatment." Another woman came to me and she said, "I'm out of breath and this reminds me of how I felt when my lung cancer was first diagnosed, and I'm really concerned that it's actually back." The first woman was excited and joyous and hopeful, and the second woman was terrified. The situations were basically the same, but by virtue of what they were thinking in that situation, their emotional experience was different.

I've experienced this as well with the thought of, "I will never survive my father's death." We as caregivers are very good at catastrophic thinking, at jumping to conclusions, and engaging in these sorts of cognitive errors that are just not helpful. And while surviving a care partner's death is enormous, is deeply soul-altering and life altering, our capacity to survive it is most often there.

So through cognitive restructuring, which is gently challenging the validity or helpfulness of thoughts, we come up with a new type of thought like, “I will survive my father's death, but my life is going to be very empty.” Now that allows you to engage in what we call problem-solving. What steps can you take to address that situation?

So for me, it meant: who would be available in my social support network? Who would I get to spend that time with now that I wouldn't be with my dad? Who would be around to help me to fill that space in the initial aftermath of his death? And so cognitive restructuring is a very powerful tool.

An equally powerful tool, and much, much simpler, is my go-to stress management tool for all of us, which is our breath. Taking a very deep diaphragmatic breath – that's a deep breath in through your nose, holding it for a few seconds, exhaling through your mouth slowly – that brings oxygen to our brain. It lowers our stress hormone cortisol. And if you do that breath in the middle of a difficult conversation, it gives you a little pause before you speak. Taking that deep breath, even just a minute of deep diaphragmatic breathing, can help you to feel a bit more in control of your emotional experience.

Dr. Diane Reidy-Lagunes:

And even in situations where the caregivers feel like they don't have the control – maybe they didn't even want to be a caregiver in the first place, and they've sort of inherited this situation – that can be quite overwhelming. You talk about the way to try to find meaning and purpose in that moment.

Dr. Allison Applebaum:

We as humans have the capacity to experience both meaning and suffering. One does not negate the other. I use a metaphor of a crème brûlée. For those of you who are not crème brûlée aficionados – crème brûlée happens to be my favorite dessert – when it's done properly, it's crispy on the outside and it's creamy on the inside, and it's cold on the inside and it's hot on the outside. And when you take that first bite, there is so much going on. This is how I think about the emotional experience of caregiving. At any one moment, we can experience sadness and fear and isolation and resentment and love and hope and strength. The suffering and the meaning can exist in a beautiful crème brûlée.

And I want to emphasize that this is not me speaking about the power of positive thinking or turning lemons to lemonade. I will never discount the suffering that any of us experience as family caregivers, but I am saying that we all have the capacity, despite what we might not have chosen, to connect to meaning and purpose. Most of us don't choose suffering, but we do have control over how we choose to respond to the situations we're in.

That can mean the extent to which we delegate caregiving responsibilities, or the extent to which we look at caregiving as an opportunity to connect more deeply with a care partner. I think it's very important to acknowledge that many caregivers are tasked with taking care of individuals who, in the past, were abusive to them or with whom they've had toxic relationships. Despite that you can still gain new strength through caregiving. You can choose to look at it as an opportunity to either repair a relationship, heal something from the past, or work on yourself. Again and again, I hear caregivers say to me that they found their voice through caregiving, that they never knew how outspoken they were until they became a caregiver because they had to navigate all the healthcare communication. So being able to choose to respond to the limitations of caregiving is one very powerful route to meaning.

Another very powerful route to meaning is connecting to the fact that who we are authentically as humans does not change because of caregiving. There are so many losses, absolutely. Maybe you can't work full time, maybe you can't travel, maybe you can't engage in the leisure activities you once did, maybe you can't do all the things that once brought you joy or make you feel like you're yourself. But deep down who you are as a loving and caring person, as someone who enjoys nature, as someone who has a sense of humor, as someone who's an artist, those things don't get taken away from you. That's who you are. And so an additional route to meaning for caregivers is remaining connected, in even small ways, to your authentic sense of self.

I'll use myself as an example. I had a first career as a ballet dancer, and dance has always been a big part of who I am, but my regular dance practice got shoved under the rug when I became a caregiver. But I realized about a year or two into it that I needed to reconnect to that part of myself. And maybe I couldn't take a ballet class every night, but it did mean if I was stuck in the hospital with my dad, well, his hospital bed had bars on it and those bars made a great ballet bar, and that's what I used. Again, this is not negating suffering. I had my leg on the bar while crying. The suffering was there, and I was still Allison, I was still myself. That really helped to carry me through both caregiving and through grief after my dad's death in 2019.

Dr. Diane Reidy-Lagunes:

One of the lines that you said was significant for you, and it was for me as well, was when you wrote that we do dramatically more to help families bringing humans into the world than to help caregivers supporting family members who are making their exit out of this world. And I think, as a society, that really resonates and holds true. Can you talk to me about how you feel the caregiver experience has shaped much of our societal norms, and from a public policy landscape, how we may be able to move this forward as something that our nation really needs to discuss more?

Dr. Allison Applebaum:

I feel like I could spend an entire podcast on this one topic. We do dramatically less for families who are stepping into the family caregiving role for patients with chronic or life-limiting illnesses than we do for new parents. I actually was at a baby shower this past weekend and kept thinking to myself that my friend has now received at least a year's worth of supplies, financial support, and incredible emotional support in advance of the arrival of her child. And yet when we step into the family caregiving role, we get little to none of that.

A recent estimate stated that the efforts of family caregivers in this country accounted for $600 billion, but by definition, family caregivers are unpaid. We don't have a robust paid family medical leave plan in this country. There are state by state rules, but they really miss the mark. And really, unfortunately, many of our national policies do not apply to every caregiving relationship. So if you're a sibling or if you're an unmarried partner, you might not be protected legally despite the fact that you are the primary caregiver. So it's a really challenging circumstance right now for family caregivers.

I think we're at a precipice of change. In late 2022, the Administration for Community Living announced their national strategy to address some of these issues and actually outlined 350 federal actions which, when implemented, should address so much of the distress and burden that family caregivers experience, including more flexible paid family medical leave, more flexible tax credits – you can actually get some financial reimbursement for all of the work that you're doing – but that is all to be in the future. As of today, it is very, very difficult to navigate.

I encourage every caregiver I work with who's concerned about this balancing act to speak early with members of their employer’s HR department to understand what benefits are available to them that they might be able to take advantage of both now and in the future, should they need time off from work. Because I should say, one of the major drivers of distress and burden is not just the hands-on caregiving, it's also maintaining paid employment.

Dr. Diane Reidy-Lagunes:

Well Allison, on behalf of all of our patients and their caregivers and loved ones, I can't thank you enough for sharing your story and for teaching us so much. This is a terrific book, "Stand By Me.” Thank you for coming on the show.

Dr. Allison Applebaum:

Thank you for having me.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us your questions, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it on Apple Podcasts or wherever you listen. Any products mentioned on this show are not official endorsements by MSK. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.