Graft-versus-Host Disease Caregivers are Survivors, Too!
May 2, 2023
Presenter: Michelle Bishop, PhD, Coping with Cancer and Caregiving, LLC
Presentation is 43 minutes long, followed by 11 minutes of Q & A
Summary: Living with graft-versus-host disease (GVHD) can be challenging not only for the patient, but for the patient’s caregiver as well. It is vital for family caregivers to maintain their own health and quality of life while caring for the patient/loved-one. This presentation presents a road map for how to do just that.
- Chronic graft-versus-host disease leaves many patients, and their caregivers, feeling like they traded one life-threatening disease for a chronic, often debilitating, disease that can last many years.
- GVHD is a rare disease. Communicating about GHVD with family and friends and retaining their support, long-term, can be difficult because they don’t really understand what’s going on.
- It is better for patients and caregivers to work as a team to deal with the challenge of GVHD, than to navigate GVHD as two separate individuals.
(02:36): GVHD is a common complication that affects over half of stem cell transplant patients who were transplanted with donor cells (allogeneic transplant).
(03.35): Treatments for GVHD can cause very difficult side effects.
(04:10): From a psychological perspective, GVHD is challenging to cope with and adjust to, for both the patient and the caregiver.
(11:28): Many describe chronic GVHD as an emotional rollercoaster, full of ups and downs and unexpected twists and turns.
(11:50): Patients with GVHD can be afflicted with symptoms such as fatigue, pain, and physical disability. Caregivers are also affected by GVHD, experiencing lack of sleep and other physical and psychological difficulties.
(13:05): Both patients and caregivers experience loss: loss of freedom, loss of independence, loss of self or identity, loss of their former work or lifestyle, loss of the future they had imagined both for themselves and their loved one.
(14:57): Caregivers are often affected by the way that family and friends inquire about the patient but not necessarily the caregiver, resulting in caregivers feeling isolated and alone. The risk of caregiver burnout can be high.
(19:55): Peer support can be particularly valuable, especially when dealing with a rare disease that few people have heard of.
(26:56): It's important for both the patient and caregiver to engage in things that remind them of who they are, as individuals, as a couple, as people
(36:40): Caregiver self-care is vitally important. Symptoms of burnout can include feeling down, depressed, overwhelmed, irritable, tearful, or finding it hard to concentrate. Sometimes self-care involves professional mental health help.
Transcript of Presentation:
(00:01): [Marsha Seligman]: Hello everyone. Welcome to the workshop Graft-versus-Host Disease Caregivers are Survivors, Too! My name is Marsha, and I will be your moderator for this workshop.
(00:11): Before we begin, I'd like to thank Incyte Corporation and Pharmacyclics, an AbbVie company, whose support help make this workshop possible.
(00:21): Introduction of Speaker. It is now my pleasure to introduce today's speaker, Dr. Michelle Bishop. Dr. Bishop is a clinical and health psychologist with over 25 years of experience helping patients and families cope with cancer, cancer survivorship, and caregiving. She spent the first half of her career at the University of Florida, providing care to transplant families and doing quality of life research for transplant survivors. She was the project coordinator for a large federally funded study of long-term blood & marrow transplant [BMT] survivors and their spouses, which led to a groundbreaking report on the experiences and needs of BMT spouse caregivers.
(01:00): Dr. Bishop is now in private practice and provides care for transplant survivors and caregivers. She also currently works with BMT InfoNet, coordinating projects to address the unmet mental health needs of transplant families. She serves as a facilitator for BMT InfoNet's GVHD survivor and caregiver support groups. Please join me in welcoming Dr. Bishop.
(01:28): [Dr. Michelle Bishop] Thank you, Marsha. Good afternoon, everyone. Thank you so much for being here today and thank you to BMT InfoNet for the opportunity to participate in this wonderful symposium. I'd like to acknowledge and thank all the GVHD caregivers who have shared their thoughts, feelings, and experiences with me through the years. They helped to inspire and inform this talk today.
(02:07): The goals today are to describe and understand the unique challenges of living with chronic GVHD, and to talk about the ways in which GVHD affects family members in particular, both in their roles as caregivers, as well as being fellow survivors or co-survivors themselves. We will discuss self-care and other coping strategies that are important for family caregivers to engage in, in order to maintain their own health and quality of life along the way.
(02:36): Just by way of a quick overview, chronic GVHD is a common consequence and complication of an allogeneic transplant, that affects over half of allogeneic transplant survivors. It occurs when donor immune cells, or what we call the graft, perceive the patient's or the host's organs and tissue as foreign and attacks them. Chronic GVHD can affect many organs, most commonly skin, mouth, and eyes, but also, joints, fascia, GI tract, liver, lungs, genitals, and other tissue. For some survivors, just one organ is affected, whereas others may experience GVHD in multiple organs at the same time. And it goes without saying that it can be very disabling and distressing.
(03:21): GVHD can range in its severity from mild to severe. It most typically starts within the first year after transplant, but sometimes can show up later, which psychologically adds to the sense of surprise or shock when that occurs.
(03:35): Treatment for your chronic GVHD may last years, sometimes indefinitely, leaving patients feeling like they traded an acute, life-threatening disease for a chronic, often debilitating disease. This usually isn't a short-term experience or path. Many of the treatments used to address chronic GVHD can have very difficult side effects themselves, that can be disabling and distressing as well. This adds to the challenge. Folks find themselves having survived cancer and transplant and now, dealing with a completely new disease, essentially having traded one acute life-threatening condition for another chronic, often debilitating disease.
(04:10): From a psychological perspective, there are a number of aspects of GVHD that may get especially challenging to cope with and adjust to. GVHD is a new, unfamiliar condition. Because doctors can't predict with certainty who will get it or how it will manifest, it feels unexpected. Many patients and caregivers say that they weren't told very much about GVHD prior to transplant, or if it was discussed, they had the impression that it could be fairly easily managed. But actually, living with it can feel like a much bigger challenge than expected.
(04:42): It's also a rare disease, so this means that the average person has never heard of it. And it's very unlikely that folks in your support system will know or understand what it is.
(04:51): The scientific understanding of chronic GVHD is still evolving, as are its treatments, and there aren't that many specialists. So sometimes, it can be hard to get the care one needs.
(05:01): It's a chronic disease, meaning it's ongoing, as noted earlier, and sometimes requiring treatment for years. It comes with a lot of uncertainty and unpredictability. One can't predict when it will begin, how long flares will last, if and when they will come again, and those flares can be pretty serious and quite stressful. All of these factors can make it especially stressful and challenging to deal with and adjust psychologically.
(05:28): Today, we're going to conceptualize living with chronic GVHD like being on a kind of road or journey. You might think about it as an unplanned road trip that you had to take unexpectedly, shortly after you just got through the challenging trip of cancer and stem cell transplant. You might feel like you haven't even had a chance to catch your breath after that long previous trip.
(05:49): This new road that you're being thrown onto has many unpredictable twists and turns, detours, and roadblocks to navigate. It doesn't have a clear endpoint or destination, and you, as the caregiver, are, in a sense, the vehicle on this road, caring for the survivor, as well as perhaps other family members, such as children or aging parents. You may also find that you're in the driver's seat much of the time. Nonetheless, it is a shared journey that both you and your loved one are on together.
(06:21): I keep using this term ‘family caregiver’, and I wanted to stop for just a minute and say a few words about whom I'm referring to. Most, if not all, allogeneic transplant recipients must have a caregiver to go through transplant. And most often, in the world of adult transplant, that person is a spouse/partner, but it can also be a parent, adult child, sibling, or friend. These are the folks that provide physical, practical, emotional, social care and support during transplant, as well as after transplant, through long-term survivorship.
(06:51): Quite often, family members don't identify themselves as caregivers per se and may not distinguish the caregiving role from their role as a partner or family member. But there are so many additional care roles that come up with caring for someone going through transplant, living with GVHD, that I think it's important to acknowledge these additional roles separately. Many of these roles, which we're going to talk about in just a minute, are similar to the roles of professional caregivers, such as nurses or home healthcare assistants, but your role as a family caregiver is "informal," meaning you don't get paid, and you don't get to punch out and be off the clock after your shift. You're on the job 24/7. You have a double role as a caregiver and as a family member, and as such are impacted by GVHD, both directly and indirectly.
(07:43): Let's talk a bit more about those GVHD care roles. Many of these are not that different than the roles that you engaged in during and immediately after transplant. For example, providing hands-on care or assistance, if your loved one is having mobility issues or needs help with personal care tasks. You may be helping to monitor symptoms, helping with medical regimens, driving your loved ones to medical appointments, and so on.
(08:05): However, it's important to note that these tasks may be a little different and, in some cases, more challenging than before, now that you're dealing with GVHD. For example, helping to monitor for symptoms of GVHD can be particularly challenging, because it's hard to know, "Is this GVHD? Is this a late effect of the chemotherapy? Is this a side effect of GVHD treatment? Or is it a symptom of another medical condition or even of aging?"
(08:34): For example, it may be particularly challenging to make or find foods that a patient can tolerate if they're dealing with oral GVHD. You might find yourself spending hours on the phone, advocating for your loved one with insurance companies and pharmacies to try to get GVHD medications. And because there are so few GVHD specialists, you may find yourself acting as a liaison between doctors in different medical systems, instead of having one medical team in one place at the transplant center. Of course, you're doing all of this while continuing domestic and work roles.
(09:06): Communicating with family and friends could be more complicated, because they may not really understand what's going on. You may also find yourself in the role of protector, feeling a great deal of responsibility in trying to keep your loved ones safe from outside germs, because GVHD treatments can leave patients immunocompromised. Juggling all these roles can be overwhelming and it can be hard to try to keep all those balls in the air, making it hard to stay cheerful and keep up the spirits of your loved one.
(09:35): So very briefly, just as I wanted to explain what I meant by "family caregiver," I wish to explain what I mean by "survivor" and "co-survivor." I didn't make up this term. The National Cancer Institute and the National Coalition for Cancer Survivorship designated the term "cancer survivor" to refer to anyone who's been diagnosed with cancer through the balance of their life, and they include family caregivers in this definition, acknowledging that they, too, are affected. We use the term "GVHD survivor" or "patient" to indicate anyone who's been diagnosed with GVHD, and because family members are affected too, they are included in this definition as well.
(10:17): We could think about there really being three experiences on this journey. The patient survivor experience, as an individual who's living with GVHD in their body; the family caregiver experience, who's living with and caring for someone with GVHD; and the shared experience of the patient and caregiver, who are navigating this road together, hopefully, working as a team.
(10:38): I'm going to briefly talk about some of the shared similar experiences of patients and caregivers, as well as some of the ways that GVHD affects them differently. I facilitate both GVHD survivor and GVHD caregiver support groups for BMT InfoNet. And folks in both groups say these things about their experience with GVHD.
(11:00): For many, GVHD feels unexpected, and they say, ‘I had no idea this could happen’. Many describe living with it like a game of Whack-A-Mole, depicted here in this picture. This is a carnival game, where a mole pops up unpredictably, and you have to try to smack it down again and again with a mallet, without knowing where it's going to pop up again. It's another way of saying "It's always something." Just as you take care of one thing, another thing pops up.
(11:28): Many describe the path as an emotional rollercoaster, full of ups and downs and unexpected twists and turns. There may be excitement in finding a new treatment, only to be followed by frustration with the cost of treatment. And there's that aspect of it being a rare disease. You may feel you're traveling alone on that road and that others don't understand.
(11:50): In terms of the physical act impact of chronic GVHD, of course, patients are particularly affected by what GVHD does to their body, creating fatigue, pain, disability, and so forth. But the physical health and wellbeing of caregivers is impacted as well, as one caregiver in our group asked, "Can caregivers get chemo brain too?"
(12:14): In a sense, yes, although of course, they didn't experience chemotherapy per se, but the stress and lack of sleep or feelings of overwhelm can all impact their cognitive functioning. And this has actually been documented in research studies. Their health can be directly impacted by those factors of stress and lack of sleep, and, indirectly, by not having time to exercise or take care of themselves, which puts their own health at risk.
(12:43): In terms of the psychological or emotional impact of chronic GVHD, both patients and family caregivers, of course, experience the shock, uncertainty, fear of the unknown. Managing GVHD can take up a lot of time and bandwidth, as we noted when we talked about just a few of the caregiving roles. And it sometimes can feel like a full-time job for both patients and caregivers.
(13:05): Both patients and caregivers experience different kinds of losses, such as loss of freedom, loss of independence, loss of self or identity, loss of their former work or lifestyle, loss of the future they had imagined for themselves and their loved one. I actually don't think this is talked about enough. Many survivors and caregivers are not consciously aware that they're dealing with all these different losses and may not realize that their feelings of sadness, anger, frustration could be directly related to those losses and are actually manifestations of grief.
(13:40): Of course, both survivors and caregivers worry about the future and finances, especially if one or the other is no longer able to work.
(13:49): In addition to these shared themes, family caregivers often have a tremendous sense of responsibility for the wellbeing of their loved one. Sometimes they feel like their loved one's very life is in their hands. They may feel overwhelmed, angry or resentful, that GVHD has taken over their lives and then, immediately feel guilty for feeling that way, because of course, it's not the survivor's fault. Many feel they need to hide their feelings, not wishing to burden the patient or make them feel bad. For these reasons and others, numerous research studies have shown that caregiver emotional distress is typically as high and, quite often, much higher than the patient survivor distress.
(14:29): In terms of social wellbeing, the patient's fatigue, weakness, restrictions, or immunologic vulnerability can make it difficult to go out and do things. It can be hard to make or keep plans, not knowing how the patient will feel at any given time. Friends and family may not understand and may stop helping or stop inviting family to friends and gatherings. This, of course, affects both the family caregiver and the patient survivor.
(14:57): Some ways that family caregivers are particularly affected, in terms of their social wellbeing, are that family and friends may ask after the patient, but may not think to ask after them, to find out how they are doing, not realizing all the ways that they, too, are affected. Because caregivers are often so busy, they may lose touch with their own friends, and these and other factors can result in caregivers feeling particularly isolated and alone. Research studies show that they often experience more loneliness than survivors, even years after transplant.
(15:32): In terms of the impact of chronic GVHD on the relationship between caregiver and patients, it can be very hard to see your loved ones suffer and witness all the physical and emotional changes. Of course, the patient's pain, fatigue, skin changes, weight loss, low sex drive, genital changes can affect physical touch and intimacy between partners or spouses. The patient-caregiver role can change the interpersonal dynamics between the two, especially spouse/partners. The couple goes from equal partners to unequal roles of nurse-patient, which sometimes can feel like parent-child. As one caregiver said, "I try not to be his mother."
(16:13): This is certainly not conducive to intimacy. And you might also feel like you've lost your confidant or your companion. As a caregiver, it can be hard to know when to remind the patient of their medications, or nudge or push them to do their exercises, and when to let go and let them do it for themselves or let them not do it. This can create frustration and conflict on both sides of the relationship and it can be hard to stay cheerful when you're feeling scared and tired yourself.
(16:45): It's not surprising, with all the things that we've already talked about, that the risk of caregiver burnout can be pretty high. Coming back to our car and road trip analogy, we could think about this in terms that the risk of the car and driver breaking down at some point along the way is pretty high. We want to try to prevent this. Again, this can be a long road with an uncertain endpoint. It's important that we find ways to keep that car or you, the caregiver, in good shape to go the distance.
(17:16): And we can do this. Now that we understand that chronic GVHD can be a longer road, a marathon and not a sprint, we have to prepare accordingly. How do we live with GVHD and adjust and readjust to the ongoing journey, while sustaining ourselves and continuing to have a good quality of life?
(17:35): We want to build a roadmap for resilience, and today, we're going to talk about five key factors to help build resilience for this trip. First, like before any journey, it's helpful to gather information and develop an understanding for the terrain ahead, so that we have some idea of where we're going, what we can expect, and how to best prepare for what may come.
(18:00): Part of that preparation involves building a support crew, because it's too long and tough of a journey to go safely alone. We want to recognize that we, both the survivor and caregiver, are on the journey together and can work as a team, making the trip more successful and pleasant for both. Of course, as mentioned, it is absolutely critical, especially on a long road trip, to keep the vehicle and the driver in optimal condition, so that it doesn't break down along the way. It's important to recognize that, on any road trip, one needs to pull over and rest and take stock along the way as well. We're going to go through each of these in turn.
(18:43): Starting with information and expectations, not unlike the time of the initial cancer diagnosis and transplant, you may find yourself on a whole new unfamiliar road of GVHD. There's a new language to learn, new medical terms, new medications and treatments, new specialists. Because, as mentioned earlier, this is a rare disease, many people won't be familiar with it; it's going to be important to seek out GVHD-specific resources, as well as others who have traveled this road before you.
(19:14): The good news is that there are a number of excellent GVHD-specific resources and organizations; just this year, several transplant organizations listed here came together to form a GVHD alliance, to make it even easier to find and access GVHD-specific resources. BMT InfoNet, the National Bone Marrow Transplant Link, and Be The Match have excellent written materials, podcasts, webinars, and online presentations. BMT InfoNet has two searchable databases to help families find medical and mental health specialists in their area, who have GVHD experience. And there are several peer support options.
(19:55): Peer support can be particularly valuable, especially when dealing with a rare disease that few people know about or have even heard of. There really is no substitute for talking with someone who ‘gets it’, without you having to explain anything. Those who've been on this road before you may have valuable tips and tricks they have learned and resources that they found helpful, so that you don't have to reinvent the wheel.
(20:19): Talking to others can decrease that sense of isolation and remind you that you're not alone on this road. It can feel reassuring to feel that you're actually part of a community, and it's easy to access these peers or these fellow travelers. You don't even have to leave your home. You can connect by phone or via the internet if you wish.
(20:38): Specific peer-to-peer resources include things like support groups, one-to-one connections and Facebook groups. BMT InfoNet offers online GVHD caregiver support groups via Zoom, facilitated by trained mental health professionals like myself, that is psychologists or social workers who have both BMT and GVHD experience. If one-to-one connection is more your thing, BMT InfoNet, National bmtLINK, and Be The Match all offer peer-to-peer support connections, where they will connect you with another caregiver who's caring for someone with GVHD. And there are GVHD-specific Facebook groups with thousands of members who share their stories and information with one another online.
(21:21): Second, in terms of building a roadmap to resilience, this is building a support team. Whether by connecting with others who get it, from a support group or peer to peer connection, or by creating your own personal GVHD medical team, it's important to build a support crew. You will likely have to explain to family and friends that you still need help. They may think that now the transplant's over and the cancer's gone, you should be good now. You probably have to help them understand that you're now dealing with a new disease and could still use some help. It can be difficult to do it all yourself.
(21:58): Consider outsourcing, if you can. Maybe get help with house cleaning, child transportation, grocery shopping, or errand running. Perhaps there's something you can outsource for a prolonged period of time, just to get it off your plate for the foreseeable future, so that you don't have to keep asking for help. And although the GVHD landscape is different than cancer or transplant, there are still many free tools that are often used in the context of cancer treatment that can be useful to share medical updates with your support crew and to communicate needs and to organize help, such as CaringBridge, Myline, Lotsa Helping Hands, and MealTrain.
(22:37): There's absolutely no doubt that it can be a little bit more challenging to get support at this point in the journey. As we've talked about, your support system may not understand that you even need help. It can be hard to ask and to keep asking for help. And you may worry that your support system is starting to fatigue or fade.
(22:56): Of course, help is not always helpful. Sometimes, even the most well-meaning people can say or do things that don't feel very nice. So how might you manage those particular challenges with getting ongoing help?
(23:10): You could try by putting GVHD in a framework that others might be able to better understand, like multiple sclerosis or Parkinson's disease. Now, although chronic GVHD is obviously quite different than those conditions, other people might understand the overall concept of a chronic disease, that it's ongoing, that there may be good days and bad days, and that you don't just get over it and move on.
(23:37): You could point them to the GVHD information resources we mentioned earlier. Perhaps they would be interested and willing to learn more about what you're dealing with. I think the GVHD Alliance website would be a particularly good place to start with and point them to. Actually, a caregiver in our group recently did this, and her friends and family thanked her and said the information was really helpful and that they hadn't realized or understood what her family was going through.
(24:02): On a more practical level, you could be ready with a list when people ask, "Can I do anything?" Because it's going to be most helpful to you and to them to be specific and clear. Saying things like, "Well actually, it would be super helpful if you could sit with my patient and keep him company while I run to the store." Or "Would you mind picking up a prescription for me?"
(24:28): Remember, there are many multiple sources of support that perhaps you could tap into, work, church, neighbors. Sometimes folks that we would never expect turn out to be the ones that are the most helpful. And again, if at all possible, it's helpful to build an ongoing support for the long haul, so that it really becomes part of the routine and a regular thing.
(24:51): Number three on the list of building resilience for the road trip is remembering that you are both on this road together and you can work as a team, rather than as two separate individuals. Understandably, sometimes patients and caregivers engage in something we call protective buffering. That means they don't share their feelings with each other for fear of burdening the other. And of course, that's okay some of the time, and later, we'll talk about the importance of finding different outlets for expressing thoughts and feelings. But often, not talking to your loved one can result in greater feelings of isolation and emotional distance between both of you.
(25:31): It's important to try to communicate openly, clearly, and of course, respectfully. You can't read each other's minds, even if you've been together a long time. It can be most helpful to make what we call "I" statements, such as "I'm feeling this" or "I find it stressful when," rather than "you" statements that might put your loved one on the defensive.
(25:56): Encouraging patient independence is important, but this may mean that you have to give up some control. They might not do it exactly the way that you think they should do it, but you know what? Perhaps it's good enough. Doing it themselves will help them to feel that they have some control, and it can reduce your burden. This is a great example of something that you could talk about openly and navigate together. Together, you might work on finding new ways to do old things and engage in creative problem solving together.
(26:27): For example, I worked with a couple that used to love to travel and hike together, but the GVHD survivor didn't have the stamina to hike any longer and really had to be careful of being out in the sun. They decided to try traveling with another couple, and they found a place to stay with a balcony. The survivor could then stay back and enjoy the view and rest, and the caregiver could hike with friends. And then, they would all have dinner together.
(26:56): It's important, of course, for both of you to engage in things that remind you of who you are, as individuals, as a couple, as people. Because sometimes it can feel like GVHD can take over, but you're still the same people you were before. If you can try to tap back into those things, that can be helpful. The goal is to live with GVHD, but not let it define or consume you.
(27:22): Number four, caregiver self-care. Now, this might be one of the most important things you can do to build resilience for this road, and honestly, the most caring act you can do for your loved one. It's actually so important I'm going to share with you three different self-care metaphors, with a hope that you will find one that speaks to you and helps to really bring this message home.
(27:46): The first one is the car analogy we've mentioned. You, the family caregiver, are, in a sense, both a vehicle that's carrying your loved one, maybe other family members, forward on this road, as well as probably, most often, the driver. You think about it though, if something happens to you, if you break down along the way, what is going to happen to your loved one? It really is a loving, caring act toward your loved one to make sure you're okay, that you have what you need to go the distance, and that they don't have to worry about what will happen to them if you break down and end up ill or in the hospital.
(28:23): We will, of course, talk about some specific ways to keep you well and running optimally in just a moment. Before we do that, I just wanted to mention two additional metaphors. One I'm sure you've heard of, if you've ever been on an airplane, which is that caregivers need to put their oxygen mask on first. And though it's often used, I think it bears repeating, because again, if you think about it, if you try to help your loved one with their oxygen mask before putting yours on first, there's a good chance you're both going to pass out. You're both going to be in trouble. But if you start with yours and you're okay, then you have the time and kind of the security, if you will, to help them with theirs. And you're both going to be okay.
(29:09): Here's one last metaphor; that of a battery. You could also think about the essential energy that you need to live and function in terms of battery life. I don't know about you, but one of the first things that I do when I get home is check my cell phone battery and plug it in if it's running low. I don't even really think about it. I just know it will be a problem later on if I need my phone for something and the battery's dead. If we can do that automatically with our phones, can we not learn to do that automatically for ourselves?
(29:38): Of course, it's harder to care for ourselves than it is our phones, right? And it's helpful to understand why that might be -- there are many reasons. We can feel selfish. We may feel we don't have time. We may not want to bother other people. Or in the context of GVHD, we may be concerned about involving others, especially in terms of the possibility of exposure to germs or opportunistic infections. Or there may be a sense that you shouldn't need a break. But I hope you're beginning to see that no one can do this alone. In fact, it is truly an unselfish act to care for yourself, because that is what needed to sustain the care for your loved one in the long run.
(30:16): What do I mean by self-care? I have to say, this word sometimes gets a bad rap or is misunderstood, and a lot of caregivers will think we're talking about ways to treat themselves, like going to a nail salon to get their nails done. That's actually not the type of self-care that I'm talking about. Although if getting your nails done gives you some rest and pleasure and respite, by all means, do it. But when I think of self-care as a psychologist, it's really about a deeper level of health and wellbeing and fundamental deep self-care, replenishing and protecting one's physical, emotional, social, and spiritual energy. And it's an ongoing practice of maintenance and monitoring, not an occasional treat.
(31:05): What can we do to keep mind, body, spirit strong, robust, and resilient? We could think about it a little bit like car maintenance. As with a car, if we keep our battery charged, we don't have to worry about getting stuck somewhere. If our tires are pumped up with air, it reduces wear and tear, it makes travel more efficient. We actually use less gas if our tires are pumped up. We're also better able to maneuver quickly if there's an unexpected pothole in the road. So similarly, when we keep ourselves in good mental and physical shape, we actually run better, more efficiently, and are less likely to experience burnout.
(31:45): There are many ways to do this, and I will say, I'm very conscious that you all have enough going on and enough on your plates that you don't need another to-do list, a list of "Do this and do that" of self-care strategies. But I do encourage you to stop and think for a moment about the things that you personally find helpful in replenishing your energy or recharging your batteries. These things don't actually have to take a lot of time. These could be physical things, like going for a 15-minute walk, playing with your dog, stretching, doing 10 minutes of yoga. They could be social things, such as having coffee with a friend once a week. They could be things that are helpful emotionally, such as spending a little time alone or outdoors, or they could be things that you find grounding, quieting, or spiritually recharging, such as prayer, meditation, or mindfulness practices. Everyone's different, but everyone needs to recharge their different batteries. You know yourself best. Think about what might work for you.
(32:52): I'd like to share a wonderful example of self-care with you, just to give you an idea, a flavor of what it could look like. We had one caregiver in our group that found that going to choir practice once a week for two hours was her oxygen, her self-care, because when she went, she would see her friends in the choir. And that gave her a chance to connect socially and to tap into that part of herself that was present before GVHD. She would lose herself in the music, which gave her both some temporary respite from everyday life, as well as being... She found it spiritually uplifting. She would sing her lungs out and expel any built up physical and emotional tension. Then she'd return home, two hours later, feeling recharged and refreshed.
(33:44): You can see how this simple ritual recharged a number of different energy cells and how just a couple of hours a week could make a really big difference in refreshing her energy. She could have easily said that she didn't have time or that choir practice was a trivial endeavor in the context of a serious medical condition like GVHD. But you can see how that simple act could make such a difference to help prevent burnout and that it wasn't trivial at all, and it really was one of the keys to her wellbeing and self-care.
(34:17): I certainly realize that it's easy for that laundry list of caregiver care tasks to creep in and take over before you have a chance to do anything for yourself. It is important to try to prioritize and protect your self-care. And oftentimes, it's helpful to try to do something first thing, before the day gets started, because it's so easy for everything else, at that point, to kind of take over. Or perhaps schedule it in, like that caregiver did. It really is an opportunity to advocate for yourself and communicate with others, especially your loved one, that this is something important that you need to do, that will help you to feel better and help you care for them. It could help you to feel calmer and more patient, which you could say would be good for both of you. You could ask them to support you by reminding you to take time for yourself.
(35:04): Here's another example of a way that you could work together. You could also think about ways to conserve energy. For example, steering clear of people who might be taxing or who drain your energy. Or be careful of unhealthy coping strategies that might make you feel better in the short run, but, in the long run, are more likely to drain or sap your energy, making it harder to function. Of course, keeping your own medical appointments and preventive care avoids unexpected problems and emergencies in the future.
(35:38): The thing is, when we're very busy caring for someone else, we are often not even aware of how tired or lonely we are feeling. Sometimes, we're so much on autopilot that we go miles before we realize that the car's almost out of gas or there's a warning light that the engine is about to overheat. But cars have dashboards with warning lights for a reason; to bring attention to those things. And we humans need to do this as well. We just need to remember to check in, notice, and take a look.
(36:11): You could check in with yourself daily, let's say, in the morning or the evening, and just see what you find. As you check in with your body, your mind, your emotions, you might notice different physical or emotional sensations or symptoms. Those are the warning lights. You could think of symptoms as ways that our mind and bodies tell us something that is wrong or something that needs attention. And if we ignore it, we are risking burnout or breakdown.
(36:40): Mental symptoms of burnout can include feeling down, depressed, overwhelmed, irritable, tearful, or finding it hard to concentrate. Physical signs and symptoms could include pain, headaches, stomach aches, or weight changes. You might notice behavior changes, such as using more medications, alcohol, or caffeine, or neglecting your own personal care. All of these types of things could be signs that your system is getting overloaded, is at risk of breaking down, and that it would be helpful to seek medical care.
(37:13): Sometimes self-care involves professional mental health help. As a psychologist, I'm going to put a particular plug in for counseling. Counseling can be wonderfully helpful. It can be a safe space just for you. It's scheduled "me" time, where you can identify and talk through the things you're experiencing. All the thoughts, feelings, and the to-do list can get all tangled together and feel like a complete jumble, just like in this picture. Talking it through out loud in a safe, confidential space can help sort things out, helping to create clarity. It can also serve as a release for any emotional tension that has built up, and it can be helpful to get support and feel like you're not alone.
(37:55): The transplant center might have counselors or folks that they can refer you to, or you could look for community-based providers. BMT InfoNet has a directory of providers with transplant and GVHD experience. Counseling is often covered by insurance, and some workplaces have employee assistance programs that offer counseling. Be The Match has a free counseling program. I believe it's eight sessions with a licensed provider who understands the transplant world. And they also offer free spiritual support services. And of course, couples or family counseling can be helpful when we run into interpersonal challenges.
(38:30): Preparing mentally by gathering information, garnering support, and engaging in self-care are all essential for being able to stay flexible and adaptable, on a road where one is continually shifting gears and rerouting. Taking a mindful approach, taking each day as it comes, trying not to look too far ahead or behind can be helpful. Really, we can only control so much.
(38:57): Using self-compassion, gentleness, and humor is so important, especially for caregivers. So often, we can be very critical of ourselves and can have an internal voice that is very negative. We can practice treating ourselves with the same generosity, kindness, and understanding that we would treat a friend. If we do that, we'll do better on this road. It's hard enough. Why make it harder by beating up on yourself? You are doing the best you can.
(39:27): Of course, it's important to stop and get out of the car periodically; no one can keep driving without stopping. You need to pull over periodically, get off the road, get out of the driver's seat, and rest. As one caregiver said, "You can't go, go, go, go, go, go, go, go, go and then, fall apart." You have to go, take a break, go, take a break, go, take a break. Breaks, rest, respite, it can take many, many forms. You could both unplug from GVHD for a little while, just like you might unplug from your phone or from social media. You might, for instance, agree not to talk about medical things during dinner or for a whole evening.
(40:12): Perhaps you could take a bigger break and arrange to have someone stay with your loved one, so you could go to the store and just take extra time to wander around and not have to rush back. Could you get away for just one night, so that you could be off the clock and get extra rest? You may need a break from each other, perhaps both taking an afternoon to hang out with your own set of friends. And it's important to do things that help you to feel normal, like things you used to do or new things that have nothing to do with being a patient or caregiver.
(40:46): When you're pulled over at the rest stop, it can be a good time to take some time to acknowledge and process your own feelings and losses. As mentioned earlier, you are on your own emotional rollercoaster, experiencing your own feelings of loss and change. You may be reluctant to share those feelings with others, especially your loved one, because you don't want them to feel bad.
(41:05): As we talked about, therapy can be an option, but there are lots of other ways to acknowledge and process thoughts and emotions, so that they don't get stuck and add to the internal pressure inside, waiting to blow up like a pressure cooker. Writing, journaling, expressing thoughts and feelings through art and music, talking to trusted others can all be helpful. Again, acknowledging and processing grief is important before we can accept change and move forward.
(41:36): It’s important to reflect on the progress that has been made, moments worth savoring, despite the difficulties. It's also important to occasionally step out of the car and look around. We can be so focused on staying on the road that we don't realize how much time has passed or how far we have come. One caregiver in our group said that, after two years of caregiving, she went to a concert for the first time. In the darkness, with the music playing, she found herself crying, tears flowing without stopping. It was the first time that she had stopped and reflected on all she and her husband had been through and how far they had come. For the first time, she recognized her own role in making things happen, and she gave herself credit, noticing the triumphs, the joys, the special moments, even if they're just small blessings along the way, a good day, a smooth office visit, a kind nurse. Those moments of gratitude help to balance out the difficulties and writing them down can remind us that these things are there for us to see and experience every day.
(42:37): It is in times of challenge and adversity that we witness the resilience of the human spirit. Despite the challenges, family caregivers talk openly about the gifts that they've experienced along the way and the reasons they carry on. Many feel it's a sacred privilege to be able to care for their loved ones, and it feels really good to be able to help. They're so grateful for more life and time with their loved one, despite the difficulties experienced because of GVHD. They feel emotionally closer to the person they're caring for or they may experience an increase in their own personal strength or in their faith. Many acknowledge the new meaningful connections they make with others who are also traveling the GVHD road, and it can feel gratifying to be able to give back and make that road trip a little easier for someone else.
(43:24): Living with chronic GVHD can be a long and crazy road. Family caregivers are not only along for the ride, but they often are in the driver's seat. In that way, you are both caregiver and co-survivor, navigating the road together with the patient. I hope this presentation has been helpful in reassuring you that you are not alone on this road, and I hope it's given you some ideas for how you can build resilience for this road trip and maintain a good quality of life, both individually and together. As one caregiver in our group said, "I know it will be a long and possibly wild ride, but I'm ready and I'm buckled in." I hope you might feel the same way. Thank you so much.
Question & Answer Session:
(44:10) [Marsha Seligman]: Thank you, Dr. Bishop, for this excellent presentation. We will now begin the question-and-answer session. Someone would like to know if you have any suggestions about a way to step away from caregiving in the home without leaving their partner. They said it can be very challenging to always be on.
(44:47) [Dr. Michelle Bishop]: I think it really speaks to that it can be hard to physically get away. You feel that you need to be close by but, at the same time, it's like you have one ear out listening all the time. One thing, certainly, is to communicate with the loved one and explain that you could use an hour or two off the clock, where you're going to go into a separate room, you're going to rest, or you're going to listen to some music, or you're going to do something else and that you kind of check make sure the loved one's okay, but that, if they can just hang on, if they have any needs that aren't too urgent, if they can give you the space and respect that time, that would be really helpful.
(45:38): If that feels like it's not going to work, then if there's a way to bring somebody else in, and again, I know that that can be hard sometimes to find someone or to feel comfortable with someone coming in the home, but when the weather gets better, perhaps they could sit outside. And so, they're the ones who are on the clock, if you will, while you step away. And again, unless it's an emergency, it's understood that this is your break, your free time.
(46:09) [Marsha Seligman]: How do I handle my own emotions without worrying my spouse?
(46:17) [Dr. Michelle Bishop]: I think this is where thinking about different ways of acknowledging, expressing, processing your own feelings will kind of take some of that weight off. Writing, for instance, can sometimes take some of that pressure off. Writing deepest thoughts and feelings and journaling can often be therapeutic. Talking to a therapist outside the home, or to a friend outside the home can also help. Channeling methods like that can sometimes help relieve some of the pressure.
(46:56): If you're feeling scared and sad, you may want to share some of those feelings with your loved one. However, you may not want the intensity of your feelings to come out; looking for these alternate outlets, either with others or even by yourself, where you can let some of it out, can help. I always think of it as a kind of pressure cooker, so that doesn't feel quite so intense. Of course, you're both scared and uncertain as to the future. Sometimes, it actually can bring folks closer to cry together or to hold on together and say, "Oof, this is really hard." But I hear you. Sometimes we want to channel that extra somewhere else before we sit down and talk to our loved one.
(47:49) [Marsha Seligman]: The next person says they feel like a downer every time they talk about their issues. How can I open up to my friends without feeling like I'm bringing the whole mood down?
(48:01) [Dr. Michelle Bishop]: Maybe it's the psychologist in me, I think, "Well, let's just talk about it,"; with close friends, maybe you could have that conversation and you could say, "This is a big part of my life, but I also am sensitive to the fact that I don't want to sound like a downer all the time. I don't want to weigh everybody down." Perhaps it’s possible to carve out a special time with a close friend or two. Let's say your friends ask you about it, and you respond, "Well, is it okay with you guys if I talk about it for a little bit? I could use some support, and it would help me to share some of the difficulties." Maybe you can compartmentalize it and just discuss it for part of the conversation. Then, there will be an understanding that "We'll also then switch gears and we'll talk about something else”
(49:01): Or again, carve out a particular friend or time to share some of those things. If you feel like you just don’t want to discuss it at that time you can just say, "I don't want to talk about it anymore." You can say, "I really appreciate you asking, but I am realizing I could just use a break from talking about it. And I would love to just hear what's going on with you guys." Letting your friends and relatives know what you need at a given time is very helpful. If you're worried about them, ask them how they are feeling. They may or may not feel like you're a “downer” or they may be afraid to ask, but they really are interested. I think that communication can be really helpful.
(49:48) [Marsha Seligman]: I am my husband's caregiver, and I have started losing my hair. Could this be because of stress?
(49:57) [Dr. Michelle Bishop]: Absolutely. I think that could be one of those symptoms that we were talking about, in terms of signs of stress or the beginning of burnout. I think that could be a great thing to go to your own medical practitioner and talk to them and get that evaluated and see, is there anything else going on? But certainly, that can be a sign of stress.
(50:27) [Marsha Seligman]: How can I best present my frustration with my partner's condition? After transplant, he is still struggling. I don't want to worry him.
(50:42): [Dr. Michelle Bishop]: Again, it's sort of this delicate balance of figuring out what to share when and with whom. And I think, if you feel frustration and you can feel that building up and you feel like that might not be helpful for him to feel that, then again, looking for ways where you can discharge some of that energy.
(51:10): That also could be, especially things like frustration or anger is very physical, so sometimes, just actually going out, going for a walk, doing something that's more physical, to discharge that energy, taking some deep breaths, and then, coming back and saying, "Okay, I'm resetting." Again, if it's more emotional, it might be writing or talking or doing expressive arts or something, again, to kind of discharge some of that. And sometimes it is sharing with I statements and saying, "I'm struggling too. This is hard too, and let's do this together. Let's talk about it. How can I help you? How can you help me?"
(51:57 [Marsha Seligman]: I need to go back to work soon, and I am worried about handing over caregiver roles to an aide that we have hired. How can we cope with this pending change?
(52:10) [Dr. Michelle Bishop]: This is a great question whether you have a professional caregiver coming in or a friends or family are coming in to provide some help or respite. Starting with kind of education and, to the extent possible, helping that person understand the particulars with GVHD, why certain things are important, what the vulnerabilities are, why certain precautions are really important, again, there are those great online resources.
(52:53): A professional caregiver may or may not have experience with GVHD particularly, but if they were reading some of the information on the GVHD Alliance website, they're going to pick up pretty quickly, "Oh, I get it. It's this kind of medical condition. I need to be thinking in a particular way." I think trying to share, communicate the best you can with friends and family what's needed, and if your loved one can advocate for themselves, and communicating clearly, respectfully, and saying, "This is helpful, this is not helpful. I need help with this. I'm okay with this." All of those things can make that a more successful experience.
(53:41) [Marsha Seligman]: This will have to be our last question as we are running out of time, but someone would like to know if you have any suggestions about how to feel thankful. They said, My partner just went through so much, and I should be thankful and happy. But life just isn't the same. I'm sick of feeling sad. How can I feel thankful?
(54:04) [Dr. Michelle Bishop]: What a wonderful question. It's okay to feel both; it's okay to feel all of it. In fact, the reality is we do feel all of it. We can feel sad, and we can feel the loss and the grief. And we can feel frustrated, and we can feel grateful. And it's not an either or. You don't have to feel bad because you feel sad. It's almost like creating space and understanding that these are all the visitors, these are all the emotions that we're going to feel, and they're all real and they're all legitimate. Sometimes accepting assistance can actually help the process of beginning to see little things that we might feel grateful for, instead of feeling like we have to feel grateful, and we shouldn't feel sad, but to feel sad and grateful.
(55:02): It might be really little things, something that you can still do together or that... I don't know, we had a caregiver recently who had just welcomed their first grandchild, and there was this gratitude that the husband was there to witness it, could be part of that, even though he couldn't be part of it in the way that he might have been able to do before. It can be gratitude for, again, someone you meet along the way, that was just a special person, that you would never have met otherwise. I think part of it, too, is it's noticing just little tiny things and that being enough and also not feeling like it needs to be an either or. It can be both.
(56:01) [Marsha Seligman]: Thank you for that. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Bishop for a very helpful presentation. And thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way.This article is in these categories: