Catherine Powers, Ph.D. (Host) Hi, I'm Dr. Catherine Powers, assistant professor of Integrative Medicine at MD Anderson Cancer Center. And I'm here today with my colleague Dr. Aimee Christie, who is also an assistant professor in Integrative Medicine. And this is the Cancerwise Podcast. Dr. Christie, thank you so much for joining me today. We've been working together for over seven years in Integrative Medicine, seeing individual patients, running groups together, even doing a lot of research and papers together.

Aimee Christie, Ph.D. (Guest) Yes, we have. Happy to be here.

Catherine Powers, Ph.D. (Host) Well, today we're going to be talking about a very crucial part of cancer patients' lives: caregivers. They're family members, friends and other loved ones who take on tasks, both big and small, to help make the cancer journey more bearable. Caring for a cancer patient is a big responsibility, and it can be both physically and emotionally overwhelming. First, let's talk about some of the challenges caregivers face.

Aimee Christie, Ph.D. (Guest) Definitely. So, often we think about the patient as the person with cancer, but cancer really affects the whole family. Caregivers often describe the feeling that comes along with this as a helpless feeling. So, knowing that their loved one is suffering, but there are, kind of, limits to how they can help. Caregivers also have to face their own fears and worries about their loved one being sick or dying. There's other challenges, too, that caregivers face, such as managing travel to and from appointments. Caregivers are often the patients' eyes and ears trying to absorb all of the medical information because the patients are often too overwhelmed to take it in. You know, another thing I see is that caregivers are really caring for the patient during their emotional and physical distress. What have you noticed with patients?

Catherine Powers, Ph.D. (Host) Well, I've had the honor of working here at MD Anderson for over a decade, and before that, I was with the VA working with oncology patients. So, I have been able to work with a lot of amazing caregivers. I've noticed some common things along the way. But I really want to note, oftentimes being a caregiver can be incredibly difficult. So, first of all, as cancer rates are rising, more and more people are becoming caregivers. Over half of caregivers are relatively young, and women account for, I think, over 60% of caregivers. So, due to their age, oftentimes they still might have like, kiddos at home that they're raising. They might still be in the workforce with their own jobs. So, there's a lot going on in their lives both professionally and personally beyond caregiving. So, there's all these other life demands that are contributing to them, and it makes it incredibly difficult to take on all these things. So, the evidence actually shows that younger caregivers struggle even more with the emotional challenges and experience, higher anxiety and depression. And this might be because, you know, we call this generation the "sandwich generation" because they're caring for children and also caring for their loved one, whether it be a significant other or their parents. So, also obvious, you know, back in the day, cancer patients spent a lot more time in hospitals. And because of the changes in our health care system, patients are spending more time in the house, at home with the caregivers. And in many ways, this is a good thing. But it also makes the caregiver take on a lot more responsibilities that they might not be completely comfortable with, a lot more medical responsibilities, such as helping with drains, or managing medications, or wrapping up for lymphodema, all sorts of different things that they are not trained for. And they feel like they're on call 24/7. So, this in itself can be a full-time job in addition to all their other life demands. So, this is kind of like the perfect storm for burnout. And for a short time, this might be feasible. You know, the adrenaline is going, and they're doing it. But after several weeks, months or even longer, they can begin to feel both physically and emotionally overwhelmed. So, Dr. Christie, can you kind of describe what caregiver burnout looks like?

Aimee Christie, Ph.D. (Guest) Sure. Caregiver burnout is really a state of physical, mental and emotional exhaustion that comes from when you've dedicated all this time and energy to caring for the the physical health and the safety of someone you care about. Let me share some, kind of, statistics with you. So, burnout in caregivers is really common. According to one study, about 40% of caregivers report that they rarely or never feel relaxed. Half reported caregiving increased their level of emotional stress, while over a third said it impacted their physical feelings of stress. Another study showed that 57% of those surveyed reported high levels of stress, anxiety and depression. What do you see as some of the signs of burnout?

Catherine Powers, Ph.D. (Host) So, I think this varies from person to person. So, for some, it's more psychological. And this can be anywhere between guilt, resentment, anxiety, depression, even anger. And others might experience more of a physical toll. This could be something like headaches, maybe sleeping too much or too little. Fatigue, appetite changes, again, too much or too little, headaches maybe, you know, jaw pain because their muscles are all clenched or back pain. So, all sorts of different physical symptoms as well. And some caregivers might also have behavioral changes. This can be, you know, started smoking again, drinking too much alcohol, maybe withdrawing from others or not engaging in activities that they normally really enjoy, even when they do have the opportunity. But oftentimes it's a combination of all three. So, one key point I do want to make at this point is it's very normal and OK to not be OK. And it means you need a break. Something's got to change.

Aimee Christie, Ph.D. (Guest) Yeah. I mean, I just want to pause on that. I love that point. It's OK to not be OK. You are not a robot. You are allowed to feel angry, scared, worried, even empty and depleted and so tired. It's, it's exhausting and overwhelming to be facing so much.

Catherine Powers, Ph.D. (Host) Yeah. And, you know, there's lots of reasons that caregivers can get burned out. You know, they just, a lot of times caregivers describe this fear of leaving their loved ones alone with somebody else because they think that they no one else can provide the same level of care as they do. And there's also a lot of uncertainty about the future, especially when there's no end in sight. And they might feel guilty about not being present 100% of the time. And they they want to be with the patient because they're scared of losing them and they want to spend all the time they can with them. So, also another key point is that there can be a huge financial strain. So, it might be the patient who is the primary breadwinner and now they're not working. Or the caregiver, it's harder to keep the same job, the hours and all that while being a caregiver. And also, I'm sure most of the people watching and listening know cancer is expensive, even with health insurance. The parking, figuring out disability, navigating the health insurance is incredibly stressful for many reasons.

Aimee Christie, Ph.D. (Guest) Yeah, and let's not forget, it's very isolating and lonely to be a caregiver. That isolation really feeds into that caregiver burnout. So, now that we sort of understand this problem of caregiver burnout, what do we do about it?

Catherine Powers, Ph.D. (Host) Well, first of all, I know easier said than done, but prevention is the goal. So, in fact, we can think about preventing burnout right along with the person that has cancer. And I like talking to people about the oxygen mask analogy here. So, when you're on a plane, the flight attendant speaking at the beginning when they're doing their whole speech, they always talk to everyone about if the oxygen pressure drops, you need to put your mask on before you help anyone else. And the reason is, if you pass out, if you are not being taken care of, you are not going to be helpful to anyone else around you. And I think that's really similar with caregivers that they have to take care of themselves in order to be able to take care of their loved one. And of course, this is not a one-size-fits-all method. It's going to be different for every caregiver about what helps to prevent the burnout. So, you know, one thing to do is try to dedicate time, ideally every day, even 30 minutes, to doing something you enjoy, whether it's reading books, knitting, woodworking, exercising, 30-minute walk, anything like that, journaling or other relaxation techniques can be very helpful to manage. And also remembering that, "No," is a complete sentence. More than ever, boundary setting and limiting all the excess stuff on your plate that you don't need to do is crucial. So, I'm giving you permission right now, all the caregivers out there, to say, "No." And of course, I know you and I are a little bit on the biased side, but we always recommend professional help, whether it's a licensed therapist like us, or another professional that might be able to help you out. I just cannot say this enough: by you taking care of yourself, you are going to be a better caregiver to your loved one.

Aimee Christie, Ph.D. (Guest) Definitely. When I'm working with patients, I often start with the basics with the caregivers and the patient. So, let's make sure you're getting enough sleep at night. You're eating healthy and balanced meals and getting a little physical, physical activity most days of the week. Now, there may be some people listening, thinking like, you've got to be kidding me. I don't have time for this. I'm too busy caregiving. And this is really where we have to be creative. So, instead of thinking about getting 30 minutes of aerobic activity a day, maybe we break that into three 10-minute walks with your dog. Or even when your loved one's in the hospital and you're kind of sitting around waiting for them during appointments, maybe you can walk the long hallways or the skybridge or even up and down around campus. So, really just thinking, being creative with how you can take care of yourself better. So, we know there are many benefits to prioritizing your well-being as a caregiver. What are some of the the benefits that you notice?

Catherine Powers, Ph.D. (Host) Yeah. And I also want to just note, too, that I even have patients and caregivers after the treatment is done, still come back to MD Anderson to walk, especially on cold days like today. But I do want to say that I know again, it does seem counterintuitive to dedicate time, like 30 minutes, to go for a walk or journal. But taking care of yourself, you are helping your loved one. And this will not only benefit you, but is going to benefit your loved one long-term with this. When caregivers start to take care of themselves, what we notice is improved mental health, better physical fitness, which is also important in being a caregiver, less fatigue. We also notice that caregivers start to balance their own needs, which leads to resilience in the face of all the inevitable stress that they're going to be encountering related to cancer. And of course, this is, there's no silver bullet. You're going to have stressful moments, but you're going to be able to manage those stressful moments better.

Aimee Christie, Ph.D. (Guest) I want to add something I hear a lot from my patients, so it's worth noting that the person with cancer often feels like a burden to the caregivers. So, as the caregiver, prioritizing your own self-care really allows the patient to exhale and not feel so guilty for depending on you. Taking care of yourself as a gift to both yourself and the patient. Let's talk more in detail about how to use the people around you. I'm talking about social support. Now, there's professional social support, like your medical team and licensed mental health providers. We're fabulous. But there's also your social network. Dr. Powers, you have a really helpful way of working with people about who to rely on. Can you describe this for us?

Catherine Powers, Ph.D. (Host) Yeah. So, there's a technique that I do with a lot of my patients and caregivers that I have them get a piece of paper out, and put the patient in the middle of the piece of paper. And make a small circle around the patient, thinking about this almost like a bullseye with the patient right in the middle. And that circle right around the patient is close family and friends, their primary support team. And then if you think about another circle around that smaller circle, this might be other friends and loved ones that are part of the support team, but not as close. And then if you think about a third outer ring, and this might involve acquaintances, people who aren't necessarily directly involved with the patient on a daily basis, but are still helpful in other ways. What we encourage caregivers to do is work on looking for support on those outside circles. So, instead of relying solely for emotional support to the patient, which might put an extra burden on the patient, they want their own support team outside the patient. They want to access the other people in the other circles for their own support. And this is not to say that they can't confide in the patient and share their thoughts, but they need their own support system, too, in addition to the patient to prevent the patient feeling like they are a burden. So, always get your own support system, too.

Aimee Christie, Ph.D. (Guest) Yeah, I love that. You know, not only does this model help teach you to kind of rely on a reach out towards, but it also reminds you of when you may need to set boundaries with others. So, if you are the primary caregiver, other extended family and friends should not be using you as their therapist. Sometimes just telling people, "I hear that you're scared. I'm scared, too. Unfortunately, I just don't have enough bandwidth to be super helpful to you right now."

Catherine Powers, Ph.D. (Host) Yeah, boundary setting is crucial. And with that said, too, when people are offering help, as long as it's not a burden on you, please accept it because they are also feeling helpless. They want to help. And whether it is, go to the post office and pick up a package, or go to the pharmacy and get medication, or maybe drive the patient to an appointment because you have a work conflict, please, if people offer help, give them a task to do. Get something off your plate. And sometimes they might not come with a specific thing. So, maybe a meal or anything else. Please, if you can accept help, if you are able to.

Aimee Christie, Ph.D. (Guest) Right. Remember earlier how we talked about the isolation and loneliness? So, sometimes I've had caregivers say to me, "No one really understands what I'm going through." And there may be some truth to this. And the presence of another human being that cares about you still, still provide some relief. So, perhaps a friend can let you vent without judgment. Maybe they just help you get out of the house and provide a distraction. Maybe a friend coordinates a walk so you can get a breath of, breath of fresh air. There are many ways to feel supported without everyone understanding exactly what you experiencing.

Catherine Powers, Ph.D. (Host) Exactly. You know, so in our discussion today, we've really talked about caregiver burnout and what it looks like, and how people experience it, and how to prevent it and address it if you do notice it. But what about the flip side? Do you ever hear of any positive things about being a caregiver?

Aimee Christie, Ph.D. (Guest) Definitely. So, some people talk about how caring for a loved one is a reflection and a way to live according to their values or the principles that guide them. Caregiving can give people meaning and purpose. There are also the uplifts of caregiving. Those are those feelings of satisfaction, joy and pride that just come from helping someone. You know, interestingly, some patients and caregivers have really talked about an increased closeness due to a slowing down of life and a newfound appreciation of the simple moments. It's important to acknowledging that caregiving is a really complex experience with both negative and positive aspects. So, I think you have some suggestions for resources to be helpful for caregivers as they're navigating the role.

Catherine Powers, Ph.D. (Host) I mean, there are so many different resources out there for caregivers. We have lots of different things in the community that we encourage people to explore. And also at MD Anderson, the Social Work department, they have a virtual support group for caregivers, and they also have counseling at no cost for caregivers as well. So, some one-on-one therapy there. And MD Anderson Psychiatry, along with one of our own music therapists in Integrative Medicine, they're actually beginning to work on another support group using music therapy to address caregiver needs and the Leukemia department. So, lots of different opportunities there. Also, MD Anderson has myCancerConnection. So, people might know this for the patients of being able to have this mentorship program, but they also have it available for caregivers so they can connect you with another person who has been a caregiver and, kind of, help to guide you through the experience. So again, you don't feel as alone as, you know, it kind of helps with that isolation. So, lots of great resources at MD Anderson and the community. There's wonderful support out there, and we highly encourage everyone do it. Well, thank you, Dr. Christie, so much for joining us on this podcast. And thank you all for being here with us today. For more information or to request an appointment at MD Anderson, you can call 1-877-632-6789 or visit MDAnderson.org.