Stand By Me: Lessons Learned from a Family Caregiver and Caregiving Scientist

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Stand by Me: Lessons Learned from a Family Caregiver and Caregiving Scientist.

April 29, 2024

Presenter: Dr. Allison Applebaum, Associate Attending Psychologist in the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, Associate Professor of Psychology at Weill Cornell Medicine in New York City and Founding Director of the Caregivers Clinic at Memorial Sloan Kettering

Presentation is 50 minutes long with 10 minutes of question and answers.

Many thanks to Sanofi and Astellas whose support helped make this Survivorship Symposium possible. 

Summary: Caregivers are critical to the United States (US) Health Care system as more procedures are moved outpatient and home care is required. Yet they must deal with the emotional toll of the responsibilities, the financial impact of being a caregiver and the accompanying negative emotions. Often times, caregivers are required to perform tasks previously performed by medical professionals yet caregivers don’t necessarily have the training.  Just like the cancer patients, caregivers experience a whole range of negative emotions which need to be acknowledged and addressed.

Key Points

• Caregivers perform a vital role in the US healthcare system. On average caregivers are providing care for 8.3 hours a day for 13.7 months. The annual economic value of caregiving was estimated in the United States as $600 billion.
• Caregivers have a tremendous amount of responsibility. They must provide care, navigate the medical system, conduct difficult conversations and act as a case manager. They must perform all these tasks often without any support.
• Caregivers must treat themselves as well as they treat the patients and acknowledge the toll that role has taken and understand and accept negative emotions. Caregivers, if needed, should seek out medical treatment. However, not all cancer centers have programs for caregivers and there are not a lot of available resources.

Highlights:

(01:53) At some point in our lives we will all be a caregiver or will need a care giver.

(04:49) Caregivers are critical to our healthcare system. They perform invaluable work on a near full time basis without pay.

(07:16) Caregivers often experience existential distress. It’s a distress we experience when we are mortal, we are human, and we and our loved ones will eventually die.

(12:45) Family Caregiver Programs in US Cancer Centers are not common. In a study conducted with 238 cancer centers, 75% said that they had at least a referral program to the community and 25% said that they had absolutely nothing.

(17:21) Caregivers experience shifting roles and family dynamics. Whether you are the parent or partner or child or sibling or friend of a cancer patient undergoing BMT or CAR T, the nature of your relationship is going to change in some fashion.

(20:01) Caregivers must balance caregiving with other responsibilities. Caregivers become case managers, which generally is a paid position. It requires a lot of energy and time on the phone.

(21:43) Caregivers are asked to perform medical and nursing tasks. Caregivers are on the front lines. This is especially so with stem cell transplantation in the outpatient or homebound setting, where patients get their transplant and literally go home.

(26:31) Caregivers must often take responsibility for healthcare communications. It is the bedrock of caregivers who are the key in the flow of information between the patient and the healthcare team. This communication can be particularly difficult when the caregiver and patient have different understandings of the prognosis or when the patient is not ready to address certain topics.

(34:42) Caregivers must cope with difficult negative emotions. Caregivers feel anger, sadness, anxiety, disgust and guilt to name a few. All of these emotions need to be acknowledged and if possible, talked about and understood.

(41:00) Despite suffering, caregiving provides an opportunity to connect to meaning and purpose. There are typical routes through which you can remain connected to meaning and purpose despite the challenges of caregiving.

Transcript of Presentation:

(00:01): [Andrea Feldmar]:  Introduction.  Welcome to the workshop, Stand by Me: Lessons Learned from a Family Caregiver and Caregiving Scientist. My name is Andrea Feldmar, and I will be your moderator for this workshop.

(00:14): Before we begin, I'd like to thank Sanofi and Astellas, whose support helped make this workshop possible.

(00:21): It's now my pleasure to introduce today's speaker, Dr. Allison Applebaum . Dr. Applebaum is an Associate Attending Psychologist in the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center and also an Associate Professor of Psychology at Weill Cornell Medicine in New York City. She's the Founding Director of the Caregivers Clinic at Memorial Sloan Kettering, providing comprehensive psychosocial care to family members and friends of patients who are in the caregiving roll. Her research focus includes the development and dissemination of psychosocial interventions for cancer caregivers. Dr. Applebaum is the author of the narrative nonfiction book, Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving. Please join me in welcoming Dr. Applebaum.

(01:20): [Dr. Allison Applebaum]:  Thank you so much for that introduction, and it is so wonderful to be joining all of you this morning or this afternoon or this evening, wherever you are in the world, whatever time it is. I'm excited to be able to share with you some of the most important lessons that I've learned both from my career in caregiving science and my experience as a family caregiver.

(01:42):  I just want to acknowledge my disclosures. I do receive funding from Blue Note Therapeutics in Beijing, though that funding is not associated with anything I'm speaking about today.

(01:53): I always like to ground my talks in the words of former First Lady Rosalynn Carter, who's famously known for saying, "There are only four kinds of people in the world: ... those who've been caregivers, ... those who are currently caregivers, ... those who will be caregivers, ... and those who will need caregivers." This is a role that touches us all often repeatedly throughout our lives.

(02:17): There is a national caregiving crisis. Now, the COVID-19 pandemic shined a bright spotlight on a national caregiving crisis, one that long predated the pandemic, but was certainly amplified as a result of the incredible responsibilities placed on the shoulders of family caregivers. The pandemic also highlighted a mental health crisis in this country, again, one that's similarly predated the pandemic, but was worsened by the collective and individual isolation and trauma brought on by COVID-19. And falling at the intersection of these two crises, our family caregivers.

(02:54): Now, long before the pandemic, we were seeing an increased attention given to family caregivers, and I took a look at the New York Times to see articles that were written on the topic of family caregiving in the few years prior to the pandemic. And these articles I'm going to show you right now are just about one-tenth of those I found. I couldn't fit any more on this slide.

(03:16): So some titles, A Shortage of Caregivers, More Caregivers Are No Spring Chickens Themselves, Daughters Still Are The Caregivers, Caring for the Alzheimer's Caregiver, Who Will Care for the Caregivers, When the Caregivers Need Healing, A Living Wage for Caregivers, For Some Caregivers, The Trauma Lingers, A Millennial Caregiver, My Family Cared for My Sick Aunt, Who is Caring for Us, At 75, Taking Care of Mom 99, We Did Not Think She Would Live This Long, Pressed Into Caregiving Sooner Than Expected, Caregiving is Hard Enough, Isolation Can Make It Unbearable, Strategies for Long-Distance Caregiving, Medicaid Patients Shift Squeezes Home Caregivers, Training Needed for Home Care is Lacking, Daughters Will Suffer from Medicaid Cuts, Caregiver Plus MD or RN, Caregivers Must Sometimes Sacrifice Their Careers, and my all-time favorite, How Getting High Made Me a Better Caregiver.

(04:25): Now, these titles speak to the range of challenges faced by family caregivers and, therefore,, those that we as healthcare professionals need to address from the financial toxicity of caregiving to the fact that so many of us are providing care from a distance, to the reality that the distress associated with caregiving does not end with the death of the patient.

(04:49): Caregivers do everything. They provide help with instrumental support, that's activities of daily living, helping patients to get dressed, to take their medications, instrumental activities of daily living, all the errands that one does, the mundane aspects of life that can become overwhelming in the setting of illness. Caregivers also provide emotional support and very often this is at the same moment when they are no longer receiving the same level of emotional support they once received from patients, so we often see a mismatch in emotional support received.

(05:29): In terms of care, on average, caregivers are providing care for 8.3 hours a day for 13.7 months. Again, this is on average. This is on average a full-time job, often conducted in addition to paid time full employment, and recently the annual economic value of caregiving was estimated in the United States at $600 billion. And yet at the same time, up to one-quarter of the 53 million caregivers in the United States report high financial strain. Needless to say, caregivers are critical to our healthcare system.

(06:08): Now, not surprisingly as a result of all of these responsibilities, every caregiver experiences distress. I'm going to focus today on caregivers of patients with cancer and specifically those who receive BMT and CAR T therapy. We know that caregivers of patients with cancer are at high risk for anxiety. Up to 50% experience anxiety, up to 30% experience depression. We know that caregivers are at risk for post-traumatic stress disorder. Yes, the same diagnosis given to many veterans returning from war. Caregiving and illness can be traumatic.

(06:45): We know that caregivers are at high risk for insomnia, and insomnia makes it so very difficult for us as caregivers to take care of our care partners. Very importantly, the distress could be severe and lead to suicidality. And as I mentioned, distress doesn't end if a patient dies, and caregivers can be at risk for what we call prolonged grief disorder, a bereavement experience that is maladaptive and is not resolving over time naturally.

(07:16): Existential distress, Now, I'm a clinical psychologist by training, and so I do a lot of work to understand the mental health challenges faced by caregivers. And there's another category that I want to explore with you, and that is what we call existential distress. Existential distress, it's not just anxiety or depression or trauma, it's a distress we experience when we realize that we are mortal, we are human, and we and our loved ones will all eventually die. And this distress is experienced in some capacity by every caregiver, and it can manifest as hopelessness, demoralization, a loss of meaning and purpose, a loss of a sense of self, a loss of dignity, feeling like you're a burden to others, and a desire for hastened death.

(08:02): And I've done some work to explore this unique experience of existential distress, and in a review of articles published among caregivers of patients recovering from stem cell transplantation, we actually found that existential distress was a particularly important concern, one that required to be addressed.

(08:22): Now, there are many reasons why caregivers are distressed. I want to acknowledge some of the shifts in our current healthcare system that are really driving continued and increased distress, and these come from an article published by my colleague, Nicholas Odom.

(08:44): So we know that there are an increasing number of patients living with advanced disease, and that's a wonderful thing, but that leads to increased responsibilities, and rarely does cancer, for example, happen in a vacuum. There are many comorbidities that require additional treatment and support and attention from family caregivers.

(09:08): There is a very dramatic push in the United States to outpatient and home-bound care, and this depends on family caregivers, and perhaps the most dramatic example of this are outpatient and homebound stem cell transplantations that actually require a family caregiver to provide consent and say that they will be available 24/7 up to a hundred days to help patients receive that transplant and recover. This, of course, is an incredibly significant responsibility.

(09:42): The complexity of care at home is increasing. We are now asking caregivers to provide some tests once assumed only by trained healthcare professionals. It's also important to acknowledge that as our therapeutic modalities improve, many patients are living longer, and many patients have a period of incapacity pre-death if that is the outcome that is longer, and that then leads to increased responsibilities on family caregivers.

(10:12): The cost of care is an added burden. An elephant in the room to acknowledge is how the cost of care leads to increased responsibilities on family caregivers. This is an element of caregiver burden, of course. I mentioned that $600 billion estimate, well, that's the estimate of the effort, the value of the efforts of family caregivers in this country. Of course, caregivers are putting in a lot of effort when they are actually taking on the responsibilities of trained healthcare professionals at home. And then of course, I just want to acknowledge the fact that so many of us are continuing to provide care from afar, remotely from a distance, and this, of course, can lead to distress as well.

(10:51): Now, very importantly, when left untreated, distress increases exponentially across a caregiving trajectory, this is just a typical cancer caregiving trajectory. And what's important for me to say right off the bat is that the earlier you can receive support to address your distress, the better. We also know that there are particular points along this trajectory at which caregivers are at unique risk for distress. Of course, if you're a caregiver of a patient whose illness is progressing, and they transition to hospice care, that of course is a very devastating time. But I actually just want to draw your attention to survivorship for a moment, as I imagine this is a period in which many of our listeners are in.

(11:36): The impact of survivorship is different for the patient and the caregiver. Survivorship is a period when we often see among patients an improvement in quality of life, an improvement in well-being. Patients will say to me, "I have a new lease on life. I feel like I'm resuming a new normal." Paradoxically, we actually see the opposite experience in caregivers, who report a very significant spike in distress in survivorship. This may be because this is the first moment when they take an exhale after those initial phases of diagnosis and treatment and seeking first and second and fifth opinions. At this time, survivorship caregivers take an exhale, and with that exhale comes a rushing in of all the negative emotions they were once avoiding.

(12:23): This is the period when distress is actually very common in caregivers, so I want to validate any of you who are in survivorship and feeling distress. Also I want to acknowledge this is often a period when we as family caregivers, and family systems more generally, become disconnected from the healthcare team, and yet support is so very needed.

(12:45): So speaking of support, in 2011, I founded the Caregivers Clinic at Memorial Sloan Kettering (MSK) Cancer Center. This was in part in response to the fact that I realized that the distress experienced by family caregivers was significant, that we as a healthcare system were increasingly asking caregivers to take on responsibilities once performed only by trained healthcare professionals, that caregivers needed instruction, education, training and support and that there were no programs nationally to support caregivers in any cancer center in our country. The mission of the Caregivers Clinic is to ensure that no caregiver experiencing significant distress as a result of their caregiving role goes unidentified and deprived of necessary psychosocial services.

(13:35): In our 2021 data for the Caregivers Clinic at MSK, 408 caregivers come to us to receive psychodiagnostic visits, meaning they met with a clinical psychologist and they went on to receive over 4,000 psychotherapy sessions. 244 of those caregivers required or requested medication management and met with a psychiatrist or psychiatric nurse practitioner. I say this in part just to normalize that that psychiatric medications can be helpful in many cases. We also provide couples and family and group psychotherapy.

(14:13): Now recently, that colleague of mine, Nicholas Odom, and I and others conducted a study. This was during the pandemic to explore the availability of family caregiver programs in cancer centers. Yes, we have the one at MSK, but what others exist? We asked about the existence of caregiver programs defined as anything ranging from the concept of care we provide at MSK to simply giving information or referral to the community.

(14:44): Among 238 cancer centers, 75% said yes, they had a ‘caregiver program’. However, when we asked about what program they had, the most common program was simply just giving information or referral to the community. They weren't actually supportive services. Now, I want to flip that around for a moment. 75% said they had at least a referral program to the community. That means 25% had absolutely nothing, and that, to me, is very, very concerning.

(15:19): There are financial barriers to creating caregiver programs. One of the consistent themes we heard about barriers to implementing programs was around billing and reimbursement and generating revenue. That’s something here at MSK we've been able to address by registering every caregiver who comes to us as a patient at MSK. This is a model of care that I and my colleagues are now disseminating, and hopefully when we redo this type of study in five years, we're going to see much different outcomes.

(15:52): Now, I want to turn to the challenges of being a caregiver for patients undergoing BMT or HCT or CAR T and talk about shifting roles in family dynamics, case management, the fact that you're going to perform medical and nursing tasks, the fact that you're going to take responsibility for healthcare communications, and I want to do so by talking about some of the most important lessons that I've learned.

(16:14): Now, I'm a caregiving scientist. I've been in this role now for 15 years, but I'm also a family caregiver. I took care of my father, Stanley Applebaum, during the last 10 years of his life. My dad had Lewy Body disease, not cancer. Lewy Body disease is a progressive neurodegenerative disease that leads to fluctuations in autonomic functioning and consciousness, which in my dad meant that he would have sudden drops in blood pressure and temperature to near hypothermia levels, and he would also hallucinate. He'd hallucinate for a few minutes, a few hours, occasionally a few days, and one point a week, and we never knew how long the hallucinations would last. We had a very complicated and challenging journey with him in his illness, and I share that, because while I'm not going to share any more details right now, everything I'm saying to you is not just a result of my work with thousands of caregivers, but my own real lived experience in taking care of an incredibly vulnerable individual within our healthcare system.

(17:21): First Lesson.  We as family caregivers experience shifting roles and family dynamics. This is inevitable. Whether you are the parent or partner or child or sibling or friend of a patient with cancer, a patient undergoing BMT or CAR T, the nature of your relationship is going to change in some fashion. That is a fact, and I think it's important just to acknowledge it that that's going to happen. Many caregivers share with me that they experience losses in the context of the relationship. For example, romantic partners have shared with me there's a loss of physical intimacy often as a result of illness and treatment and the challenges of illness and caregiving. That's normal.

(18:07): What's really helpful, I think, is to acknowledge changes as losses because they are. Certainly in my own relationship with my dad, the fact that he was so often disoriented, and I had to take responsibility for so much communication, and there were so many times when I couldn't connect with him, there were losses. Those losses needed to be grieved.

(18:32): It's also important to note, you all know this, caregiving never happens in a vacuum. It always happens in the context of other responsibilities, childcare, managing a household, managing your paid employment, managing finances, and how to manage these responsibilities while taking care of another and perhaps taking over the responsibilities once assumed by your care partner, well, that, too, leads to changes in the dynamic and in your relationship.

(19:02): I need to acknowledge the importance of self care. I personally believe for us as family caregivers, self-care is about energy. Self-care is about anything that you can do to preserve your energy, because as a family caregiver, you do not have a limitless supply of energy. That might mean creating boundaries and even cutting ties with individuals who are not buoying you up, who are not helping.

(19:38): In this relationship, it's going to be necessary for you to balance the drive within yourself as a caregiver to care for your care partner and the true drive within to care for yourself and to do so without guilt. Guilt is something I will talk about in a little while.

(20:01): The second lesson is that caregivers are case managers. Now, elephant in the room, case managers are by definition paid employees of healthcare systems, whose responsibilities are to coordinate care. But of course, we, as family caregivers, take on these responsibilities free of charge. And I have a picture of a telephone here, an image of a phone, because at least for me, my caregiving case management responsibilities meant that I was spending a lot of time on the phone. In fact, I was spending a lot of time on hold, on hold with Medicaid, on hold with a visiting nurse service, on hold with my dad's pharmacy. Trying to navigate this responsibility in the context of having a day job, was very, very complicated.

(21:05): These responsibilities can come as a surprise to many of us as caregivers. They're not the ones initially spoken about. That said, these are the responsibilities that can be more easily delegated at hands-on caregiving. Now, while you may identify as a primary caregiver, if there is someone else in your family or caregiving network, perhaps even somebody who does not live locally who wants to help, these case management responsibilities are those I strongly encourage you to try to delegate.

(21:43): The third lesson is that we as caregivers are asked to perform medical and nursing tasks. We are critical members of the healthcare team. We don't wear a white coat, we don't have a pager, but we are a member of the healthcare team. I often say to my medical oncology colleagues, the caregivers are your best friends. They are on the front lines. They have access to the real data. They know what health-related behaviors your patients are or are not engaging in. So you all, as caregivers, you are critical members of the healthcare team, and yes, you're being asked to assume responsibilities once held only by trained healthcare professionals.

(22:33): Now, I keep thinking about my own journey, which I think was on the light side medically. I had to take care of my dad's suprapubic catheter, I had to clean the opening to his bladder, I had to change the catheter bags, I had to clean his wounds, I had to give him injectable medications, I had to take his vital signs and I was never given any training to do any of this.

(22:57): The caregivers of patients receiving their stem cell transplantations either in the outpatient or homebound setting, where patients get the transplant and literally go home, you have some of the most profound and most enduring responsibilities. I just want to label it, I just want to validate for those of you who in the room who've had this experience that we are, as a healthcare system, asking a tremendous amount of all of you, that these treatments could not go forward without your efforts.

(23:31): Last year my colleagues and I wrote an article about setting some standards of support for caregivers who are asked to do this incredible work at home, that you should never be doing this in isolation. If you're going to be serving as the eyes and ears of the medical team, well, then you need to have instruction and training and support at all times so that you can carry forward those responsibilities without great detriment to yourself.

(23:59): Now, for those of you in the United States, I want to draw your attention to one of the only public policies right now that is working to help caregivers in this domain, and that's called the Caregiver Advice Record Enable Act, the CARE Act. The CARE Act is currently passed in 45 states and territories, and it has three provisions. The first states that hospitals are required to record the name and contact information of family caregivers in the medical record of patients when patients are admitted to the hospital. Secondly, it states caregivers should be informed when patients are going to be transferred and discharged, and lastly and very importantly, it states caregivers should be provided with education and instruction for all the medical tasks they're going to have to do before patients are discharged.

(24:54): The reality is that the CARE Act is not consistently implemented. I want to give you two concrete tips to help you get your needs met, even if you're in a state where the CARE Act has passed, because you might not actually be getting this education, before you leave the hospital, I know that transition from hospital to home is one of the most overwhelming, before you leave the hospital, I want you to ask a nurse or other member of your care partner's medical team to demonstrate for you all of the tasks you're going to have to do when you get home. And then, I want you to demonstrate back, perform back those tasks in front of that nurse or other healthcare professional so that you can feel confident and confident that you're doing it well.

(25:48): And then, many patients are prescribed visiting nurse visits for a few weeks after they return home. My dad always was given two weeks of visits through the visiting nurse services of New York. When that nurse comes to your home, I want you to consider that they are there not only to evaluate how well your loved one is doing, but it's an opportunity for you to brush up on your skills and for you to ask questions. Yes, we are asking caregivers to shoulder tremendous medical and nursing task responsibilities, but we don't need to do it without training, education or support.

(26:31): The importance of healthcare communications. This is often not acknowledged as a responsibility, but to me, this is really at the bedrock of what we do as family caregivers. We are the hub of an information flow wheel between healthcare professionals and patients, and that wheel could not turn without us. Our communication responsibilities are vast, ranging from the mundane to some of the more difficult conversations around goals of care and advanced care planning. These types of conversations can be very challenging, both with care partners as well as healthcare professionals.

(27:20): With our loved ones care partners, it can be really difficult to open up conversation about goals of care, because we don't want to cause anxiety and fear in our loved one and we don't want to upset them. For many of us, we feel like if we bring up the future and we bring up health in the future, then that might mean that we're losing hope and that there's a strong desire to maintain hope, and we can't do that if we're talking about the future. And when I say the future, I'm going to bring an elephant in the room, which is death. Regardless of your loved one's prognosis, regardless of how well they're doing, every caregiver, will at some point need to bring up death and that is why it is so difficult.

(28:09): These conversations don't happen in a vacuum - they happen in the context of pre-existing family dynamics. My dad and I, thankfully, have had a very warm, open and vulnerable dynamic for our entire relationship. Opening conversations about the future and goals of care wasn't the most overwhelming for me. But for so many of you and so many of my patients, because of existing dynamics, it can be very overwhelming. The other elephant in the room is that often there's conflicting prognostic understanding. I mean that perhaps you have a certain understanding about your loved one's prognosis, and they don't, or they're not willing necessarily to discuss it, and that can lead to some challenges in communication.

(28:57): It's also difficult to talk to healthcare professionals. The reality is many healthcare professionals fail to initiate conversations about the future, about goals of care. Many healthcare professionals themselves have their own anxiety and they don't know the right words to use. Often it might be difficult for professionals to open conversations because there is a lack of consent between you, the caregiver and your care partner about what is and is not okay to discuss.

(29:31): I have some tips. One of them is called the consent conversation. Many caregivers come to me and say that there is something they want to bring up with the doctor, but don’t, because they're afraid their care partner does not want to know the answer. What I encourage you to do if you are in this situation is to have what we call a consent conversation. This is a conversation you are going to have long in advance of the next visit with the doctor. It allows you to ask your care partner for permission to ask a certain question or bring up a certain topic, so that the two of you can be on the same page when you go to that visit and maximize the time you have.

(30:13): With my dad, the consent conversation might've sounded something like this, "Dad, I would really like to ask your doctor what treatments are available if this treatment stops working? Would that be okay? And is there anything that you want to be sure to bring up with her?" That then allows me to get my dad's permission. Now, if my dad says, "No, I don't want you to ask that," I would say, "Okay, I'm going to ask you again in advance of the subsequent visits."

(30:41): Concern about health related behaviors. One domain where the consent conversation is particularly helpful is if you are concerned about some of the health-related behaviors your care partner is or is not engaging in. By that, I mean oftentimes you as the caregiver have a really honest understanding of the fact that your care partner is not taking their medications, they're not exercising, they're not eating healthfully, they're drinking too much alcohol, or they're smoking cigarettes and shouldn't be, and you want to bring this up with a doctor, but your care partner wants to give a different impression. If you're in a situation like this, first, I want to say it's very difficult, and you might want to ask something like this, "I'm concerned about how difficult you're finding it to remain adherent to your medications. I think it's important that your doctor knows you aren't taking them daily. Can we mention this to him next week?"

(31:37): Another communication strategy I want to give to you today is ‘setting the agenda’. This communication strategy is particularly powerful if you are hoping to open a conversation about advanced care planning or any other topic that you might find overwhelming. Setting the agenda is helpful because it allows you to practice in advance of the conversation what you're going to say, and it allows you to very quickly put out on the table what it is you want to talk about and why.

(32:16): An example of setting the agenda. Setting the agenda might sound something like this, "Dad, I know this is really hard to talk about, but I would really like us to discuss what type of treatment you want in the future if the medication you're taking can no longer control your hallucinations. It's important for me to know what you want so I can be sure to carry out your wishes if you can't tell the doctors what you want at that time. Can we talk about this?" This is a conversation you're not going to have only once or even twice. This is a conversation that's going to be repeated, because goals of care change. What my dad wanted for his care in 2013 was dramatically different than what he wanted in 2019, and had I not had repeated conversations with him about goals of care, there would've been no way for me to know what those goals were and to eventually be able to bring his voice into the room.

(33:27): Another communication technique I want to share with you is XYZ that might be helpful to you if you're coping with changes in your social support or changes in the caregiving network. This is a technique that is really helpful in framing a conversation that could be really difficult where you tell somebody how you're feeling, and you're not feeling great about what they're doing or what they said. The XYZ Technique goes like this, "I feel (or felt) X, when you say or do (said or did) Y, because Z." So for example, if you're in a situation where you are the primary caregiver, and you have another family member who's available but not helping, you might feel resentful, understandably, you might feel angry. So you could use the XYZ Technique to express that to them by saying, "I feel really let down when you say you don't have time to come to the hospital, because I've been here every day for a month." Then you can follow the XYZ technique with an ask, "Might you be able to visit Dad tomorrow?" Tuck this one away in your back pocket.

(34:42): Lesson five: Caregivers must cope with difficult negative emotions. We all as family caregivers experience every one of the words that's on the screen right now (helpless, out of control, misery, bitterness, depleted, dread, alone, powerless, exhausted, worry…). These are words that so many of my patients have shared with me. These are emotions and feelings that I absolutely felt throughout my caregiving journey as well.

(35:06): Emotions are messengers. We have thoughts like ‘is the look on the doctor's face meant or how am I going to raise my son as a single mother?’ We have anxiety, of course. There's so much worry. What I want to highlight for you, and this is the most important piece during the lesson, is that emotions are messengers, and they tell us how to live more fully. Yes, as caregivers, we're going to have anxiety. Yes, as caregivers, we're going to feel sadness. Yes, for many of us as caregivers, we're going to experience trauma. But we actually, when we are stuck with these emotions, we actually can choose to use them to our advantage. And I want to give you three examples of this, the first being anger.

(35:51): Caregiver anger is common. Anger. Now, everyone who's joining today as a caregiver, I can't see your faces, but I want to say to you that you have every right to be angry. So many of us don't choose to become caregivers. You have every right to be angry that your life has been put on hold, that your dreams have been deferred and that you're no longer able to set the goals for yourself that you once did. That anger needs to come out. I don't mean that I'm encouraging you to go yell at your care partner, but I am saying it might be a good idea to yell into a pillow or close the car door and yell or get the anger out in a therapy session or with a close friend.

(36:29): Beneath our anger is sadness. I also want to acknowledge something deeper, and that is for many of us, it is a lot easier to feel anger than sadness. I had a patient once who shared with me how angry she was that her husband could no longer help around the house the way he once did because of his cancer treatment and how he was feeling. He was no longer able to travel, they were no longer able to have sex, they could no longer plan for the future. As she was telling me that she was so angry she started crying in session. What became so clear to me is that beneath her anger there was a deep, deep well of sadness, and that is usually the case for so many of us, that beneath our anger is sadness.

(37:19): I want to encourage each one of you, the next time you feel angry, whether it's about caregiving or anything else in your life, I want you to ask yourself, "What am I grieving? What is the loss here?" It doesn't have to be life or death and ask yourself if you can connect to that sadness and express some of it. If you can, you're likely going to see that your anger is going to diminish.

(37:45): Disgust. Let's be honest. There are elements of caregiving that are disgusting. It can be disgusting to change an adult diaper. It can be disgusting to change a colostomy bag. It could be disgusting to change dressings on a wound that has a strong powerful odor. I think expressing this disgust is necessary. What I hear too often in my clinical practice, however, and this is something I'm guilty of, is the judgment we place on ourselves when we as caregivers feel disgust.

(38:25): I had an experience where I was changing my dad's diaper one night, and then I found myself just so angry at myself for feeling the disgust that naturally was emerging. That disgust wasn't helpful. What would've been much more helpful was connecting to what my best friend said to me later that evening, which was how incredible I was to have been able to physically navigate changing my dad's diaper, and we all know that changing a diaper can actually be lifesaving, especially if a patient has bed sores. The next time you feel disgust, if this is an emotion that comes up for you, instead of judging yourself for it, I want you to ask yourself, "What would my best friend say to me if they could watch me perform this very difficult element of my caregiving responsibility?"

(39:19): Guilt. I said I would come back to guilt, couldn't be a talk on caregiving without talking about guilt. Guilt is one of the most common emotions I hear in my clinical practice. I know my patients are feeling guilty when they say statements that start with, "I woulda or coulda or shoulda," the woulda, shoulda, couldas, right? The guilt we feel when we feel like we should be doing something else. When we feel guilt, we feel like we are about to let someone else down. But the reality is the person we are about to let down when we feel guilt is not our partner in care but ourselves. In fact, guilt is a powerful wrong-way sign. It tells us we need to shift gears.

(40:09): Caregivers will say to me, "Dr. Applebaum, I shouldn't be here. I should be in the hospital with him. Dr. Applebaum, I shouldn't be here. I'm not the patient with cancer." The voice inside my caregiver patients are sharing with me is not a voice that's saying you're not taking care of them enough, the voice is actually saying you need to take care of yourself. I want you all to take a moment and listen to that guilt the next time you hear it, and I want you to ask yourself, "In what way, if I were to continue to do ABC, this thing I'm telling myself I need to be doing, if I were to do that, how would I be letting myself down?" And then, can you shift gears, can you turn around, can you go in a different direction?

(41:00): The final lesson I want to share with you is perhaps the most important lesson that I've learned and my patients have learned, and that is that despite suffering, caregiving provides all of us with an opportunity to connect to meaning and purpose. And I want to be very clear here that I am not talking about the power of positive thinking or turning lemons to lemonade. That's not who I am as a therapist or as a human.

(41:28): I have a picture here of crème brûlée. For those of you who don't know, crème brûlée is a French custard-like dessert, it's my favorite dessert, and for those of you who are not crème brûlée aficionados, when a crème brûlée is done properly, it is crispy on the outside, and it is creamy on the inside, and it is cold on the inside, and it is 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 time, we can feel sadness and fear and disgust and anger and love and hope and connectedness and strength. The suffering and the meaning can coexist in a delicious crème brûlée. They do not negate one another. And there are typical routes through which we can remain connected to meaning and purpose despite the challenges of caregiving, and I go into great detail about these in my book. I want to just give you a CliffsNotes version right now.

(42:41): The first is through remaining connected to your authentic sense of self. So many caregivers say to me that they feel like they don't recognize themselves any longer, because as a result of caregiving, they can no longer travel, they can no longer work full time, they can no longer do the things that once brought them a sense of meaning in their life.

(43:01): And then I often ask, "Well, did who you are authentically deep down change? Has caregiving changed who you are deep down?" And if you were to answer the question, "Who am I?" Would deep down, the answer change? And the answer is usually no. I want all of you to consider your own answer to the question, "Who am I?" And maybe even answer that question from the vantage point before you became a family caregiver. And then I want to have you think about how you could remain connected to your authentic sense of self.

(43:35): Then the flip side of that is the reality that yes, we also do change, all of us change because of caregiving. I'll say that I have lost track of the number of caregivers who've told me that they had no idea they were so strong until they became a caregiver, or caregivers who said that they found their voice because of caregiving, because they've had to speak up with so many healthcare professionals. So we also learn new things about ourselves, and it's been incredibly meaningful to remain connected to the ways we've grown. You're listening to Allison 6.0. This is a much different version of me than the version that began in 2013 very deeply taking care of my dad. I have changed dramatically as a result of that experience.

(44:22): We could connect to meaning through recognizing the fact that nothing happens in a vacuum, we have an historical context to our life. For many of us, we watch parents or grandparents be caregivers. We had models of caregiving in our past. Perhaps, we are carrying forward a legacy of care, an ethic of care in our family, and inevitably our responsibilities and our work as family caregivers creates our own legacy, how other people see us. Each one of you who is a caregiver, you are being witnessed as a caregiver. That is now part of your legacy and who you are in this world.

(45:02): We can derive meaning through reflecting on the fact that when everything is taken away from us, we still can choose our attitude. By that, I mean many of us didn't choose to become caregivers. We wouldn't choose to have illness in our life. We certainly wouldn't choose loss. But we can choose how to respond to the challenges and limitations and losses with which we are faced. For me, every day that I continue to work and be able to connect even just for a few hours to my identity as Dr. Applebaum and put away my role as Allison, Stan's caregiver, that was a choice. Every way in which you can choose your attitude, whatever that is in the face of your own challenges, that too is meaningful, and reflecting on how you can choose your attitude, that also can engender a sense of pride. I want you all to think about how you've chosen to face the challenges. They can be the mundane challenges or the big ones, and I want you to ask yourselves if you're proud of yourself.

(46:12): We can connect to meaning through our five senses, through what we see and touch and taste and smell and hear through feelings of love, through visions of beauty, even moments of humor, we can feel connected to one another and connected to something even greater than ourselves. My dad was bedbound for the last two years of his life. He was so very physically limited at times, very cognitively limited, but I was always able to feel love when I laid on his shoulder and when I held his hand. Those were meaningful moments. They did not take away our suffering, they did not take away my anticipatory grief, but they certainly buffered those experiences.

(46:59): I want to share with you some questions that can be helpful for you to help remain connected or reconnected to meaning in your life as a caregiver. In what ways has your sense of identity changed as a result of caregiving? What have you learned about yourself as a result of your caregiving role? Are you proud of being a caregiver? Why or why not? Since becoming a caregiver, what are the specific limitations or losses you faced, and how are you coping or dealing with them? That gets at attitude. And what are your responsibilities? Who are you responsible to and for? As we answer that last question, if you're not on your list, I want you to think about why.

(47:46): Now, I just want to acknowledge that having support is necessary, and while not every cancer center has a support program like the one we have at Memorial Sloan Kettering, there are phenomenal resources available for family caregivers such as yourselves across the country. I encourage you, a great place to start is to actually speak with a social worker, who's affiliated with your care partner's medical team. They're often a great resource. They may provide support, or they can direct you to the people in the healthcare system who do. Many social workers maintain a list of community referrals, so if they are unable to provide support to you, hopefully they can provide a referral to the community.

(48:24): I love the website, Psychologytoday.com. This is a website where you can find mental health care in your state using your insurance, whether you want to be seen in person or over telehealth. And while there is no search term for expertise in caregiving, there is a search term for medical illness, and most of the professionals who list medical illness in their profile will be able to provide support around caregiving challenges. It is important to acknowledge that many religious and spiritual institutions also offer support. Of course, peer support is a wonderful adjunct to professional support, for example, such as through BMT InfoNet's Caring Connections.

(49:04): I'm currently running a clinical trial with my colleague, Sophia Smith at Duke Cancer Institute, where we are providing psychotherapy to family caregivers of patients who survived stem cell transplantation. I have the information on the slide. If you are interested in learning more, you can contact us and see if you might be eligible.

(49:26): So much of the challenges and distress experienced by caregivers in this country, by all of us, myself included, has been shaped by our public policy landscape, and I feel very cautiously optimistic that we are on the precipice of change. I had the great honor to join the National Alliance for Caregiving at the end of 2023 on The Hill for their Caregiver Nation Summit, where we were speaking to policymakers about steps being taken in the near future to improve policy support to caregivers, and I strongly believe we're going to be seeing some shifts in the very near term. It's going to have a trickle-down effect to all of us.

(50:07): As I mentioned in February, my book, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving came out. This is a narrative nonfiction compilation of my dual experiences as a caregiving scientist and caregiver for my father. I'll give you one fun fact. My father was a very well-known composer, arranger, orchestrator and conductor, and he was responsible for the arrangement for Ben E. King's Stand by Me. So all of you who have heard that song have already met my father, Stan Applebaum, who was the inspiration for this book. And this book is really my attempt to give all of you the support that you would receive if you were a patient here at Memorial Sloan Kettering Cancer Center in our Caregivers Clinic.

(50:52): I'm going to end there. You can find me, there's my email. You can find me on social media on Twitter and Instagram, and my website, personal website, is allisonapplebaum.com. It's been such an honor to join you today, and I see that we do have some time for questions.

(51:12): [Andrea Feldmar]:   Thank you, Dr. Applebaum. This was just a fabulous presentation. We do have some time for questions, and I will begin with, "Has anybody studied the level of trust by medical providers in observations by home caregivers? My husband had an acute episode at home, maybe a TIA, small seizure, or other loss of mental acuity that had ended by the time we got to the hospital. He doesn't remember it, and some of the doctors dismissed it because it wasn't witnessed by somebody with a degree."

(51:52): [Dr. Allison Applebaum]:   Oh, my gosh. Thank you to whoever asked this question, and I just want to say this question brings up one of the greatest challenges I faced with my dad all the time, which was I found myself trying to convince members of the healthcare team of what they couldn't see was happening at home. To specifically answer your question, the answer is no. I don't know of any studies that have actually evaluated trust, but I just want to join you, commiserate with you, and validate you that that is so very painful.

(52:25): I will give you one tip, it's in my book as well, but something I often did with my dad because of his nature of his disease is I would often show videos and pictures of my dad in the days leading up to the hospital state, for example, to give his healthcare professionals a glimpse into his functioning before the hospital visit, because they wouldn't believe me when I would say how he was doing just 72 hours earlier. Anything you can do to back up the story is helpful, but I am with you, and I empathize, and I'm so sorry that was your experience.

(52:57): [Andrea Feldmar]:   Okay, thank you. "How can I offer encouragement without minimizing my partner's fear?" is another question.

(53:07): [Dr. Allison Applebaum]:   I love this question. It's such a good one. I think this is something that comes up for so many of us. The best thing you can do is always start with validating the fear. So start with a statement like, "I totally get why you feel this way. It is understandable why this fear is coming up for you, and ..." And then you insert whatever you're trying to encourage. We don't want to invalidate our care partners concerns, we don't want to belittle them, so it's important that we acknowledge and validate them before we go into whatever it is we're trying to accomplish.

(53:46): [Andrea Feldmar]:   Okay, thank you. We've got another one. "Can or should caregivers and patients go to the same therapist?"

(53:55): [Dr. Allison Applebaum]:   Love this. I have a strong opinion on this, and the answer is no, with one exception, and that is that if you as a caregiver and care partner are seeking couples therapy or family therapy, obviously you're going to see one provider. I see so many caregivers in my practice, and if I were to provide individual therapy than to their care partner, the patient with cancer, well, that would be very complicated for me because I would already be biased. I think it is so much more productive for caregivers and care partners to have their own therapist. Now that said, I recognize that there is a shortage of mental health professionals in this country versus supporting caregivers. That might not always be feasible, but if it is possible, I would strongly encourage you to have your own therapy separate from that of your care partner.

(54:45): [Andrea Feldmar]:   Okay, thank you. Clearly you have strong feelings. Got another good question.

(54:49): [Dr. Allison Applebaum]:   That's not ideal, yeah.

(54:52): [Andrea Feldmar]:   "How do I get other family members involved to either provide me with relief or to visit their mom, the patient?"

(55:01): [Dr. Allison Applebaum]:   So challenging. We can never force somebody to do something they don't want to do, but one strategy that is so important, at least to start with, is to be communicating directly about your needs. Often we as family caregivers assume that individuals in the care network are going to volunteer, that they're just going to step up. I certainly experienced this with my sibling. The reality is that we need to ask directly to get our needs met, and the more specific you could be, the better. "It would be so helpful for me if you could visit dad on Tuesday and bring him lunch. Would that be possible?" I think the best thing you can do is ask, ask, ask, and do so specifically. And if there's pushback, maybe ask why. But if we don't ask for our needs to be met specifically, it's highly unlikely we're going to get them met.

(55:54): [Andrea Feldmar]:   Okay. Thank you. "How can I help my caregiver get back to normal life?"

(56:06): [Dr. Allison Applebaum]:   Thank you for this question. I am imagining this is from a care recipient. So one of the things you can do is to encourage your caregiver to think about what it is they really valued most about their life before they stepped into the role, what parts of their identity were most important to them, and can they start to reconnect to those things? Oftentimes, when we move from an active period of caregiving into survivorship, it's not like we have a light switch we can turn on and off, and all of a sudden, we're not the caregiver. It can be really difficult to step out of that caregiving role. And I think you, as a care recipient, care partner, can encourage your caregiver to do so by encouraging them to really reconnect with their authentic sense of self and the part of them that was so important before illness and caregiving came into your lives.

(57:01): [Andrea Feldmar]:   Terrific. Thank you. I think we've got time for one last question, and that is, "Can you rotate caregivers?"

(57:09): [Dr. Allison Applebaum]:   If you have more than one caregiver available, I strongly encourage you to do so. That was not the case for me. I wish I could have rotated. If you can rotate, that is one of the best things that you can do to combat your own burnout and protect your mental health. So if you can, please, please, please do so.

(57:30): [Andrea Feldmar]:   Okay. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Applebaum for an extremely helpful presentation. And thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way. Enjoy the rest of your symposium.