GVHD Caregivers: Building Resilience for the Road to Recovery
Wednesday, October 28, 2020
Presenter: Michelle Bishop PhD, Clinical and Health Psychologist, Coping with Cancer & Caregiving, LLC
Presentation is 43 minutes with 17 minutes of Q&A.
Support provided, in part, by an unrestricted educational grant from Pharmacyclics, an AbbVie Company and Janssen Biotech, Inc. and Incyte Corporation
Summary: Caregivers for patients with graft-versus-host disease (GVHD) face unique challenges. It is important to understand how caring for a GVHD patient affects the caregiver’s physical and emotional health. This presentation discusses ways to cope and build resilience for the GVHD journey.
- Caregivers for GVHD patients take on many new roles including nursing, advocating and being a cheerleader for the patient. They need to be supported to be successful.
- Peer support programs can help relieve the isolation caregivers experience.
- The caregiving experience poses challenges, but can also have some positive benefits.
- Resilience, the ability to bounce back and survive setbacks, can be cultivated through expanding the caregiver’s confidence, social support, self-care, flexibility and finding meaning or purpose.
03:35 GVHD is a disease without a set recovery timeline and requires additional support for and preparation by caregivers.
09:41 Treatment for GVHD often involves immunosuppression which can lead to a sense of physical, psychological and social isolation both for the patient and the caregiver.
12:17 GVHD caregivers report experiencing less social support and more loneliness when compared to transplant survivors. Caregivers are also less likely to seek help.
13:00 Caregiving can wear down a person’s immune system if the caregiver ignore his/her own needs.
15:28 It is important for caregivers to be well educated and confident in their understanding of GVHD and treatments so that they can set realistic goals.
19:30 When asking family or friends for support, consider asking someone to take on a regular weekly task so you only have to ask once.
25:49 Self-care is essential and not selfish because it directly benefits the patient by enabling the caregiver to renew him- or herself in order to give quality care.
37:28 Caregivers should be gentle with themselves by focusing on each day and only what they can control.
39:15 Finding meaning and purpose requires that caregivers reflect and celebrate their progress. Many find meaning in sharing their story and supporting other caregivers.
Transcript of Presentation
00:00 [Moderator] Welcome and introductions. Hello and welcome to today's webinar, sponsored by BMT InfoNet. GVHD Caregivers: Building Resilience for the Road to Recovery. My name is Susan Stewart and I'm the founder and executive director of Blood & Marrow Transplant Information Network or BMT InfoNet, a I'll be your host for today.
If you're not familiar with BMT InfoNet, we're a not-for-profit organization that provides transplants recipients and their loved ones, with high quality, easy to understand information about bone marrow, stem cell and cord blood transplants and CAR T-cell therapy. We have many publications, a peer support program and a website that has lots of valuable information, including information and videos about GVHD.
Before we begin, I'd like to thank Pharmacyclics, an AbbVie company, Janssen Biotech Incorporated and Incyte Corporation, whose support, in part, has made today's webinar possible.
Without further ado, I'd like to introduce to you our guest speaker, Dr. Michelle Bishop. Dr. Bishop is a clinical and health psychologist with 25 years of clinical experience, helping patients and families cope with cancer survivorship and caregiving. She authored a pioneering study on well-being and needs for caregivers for the stem cell patients and has counseled and led support groups for caregivers of GVHD patients. She has served as an advisor on numerous federal and private projects to enhance the quality of life for caregivers. Please join me in welcoming Dr. Michelle Bishop.
01:49 [Dr. Bishop] Goal of talk is to focus on unique needs of caregivers. Hello, everyone. Thank you so much for being here. I've been looking forward to spending this time with you today. And thank you, Sue and your team at BMT InfoNet, for making this webinar possible, and for your tireless dedication and devotion to addressing the information and support needs of individuals and families dealing with BMT and GVHD.
The focus of today's presentation is on family caregivers who are caring for someone with GVHD or graft-versus-host disease. My goal today is to focus on the unique challenges of GVHD for caregivers' to describe the effects of GVHD on caregivers' mind and body, and to underscore the importance of self-care; and to discuss ways of coping and building psychological resilience for the GVHD journey.
02:40 GVHD and the caregiving experience is like a long road trip. We often use the word journey when we talk about cancer and transplant survivorship and caregiving. And I think it's a way to appropriately and correctly acknowledge that the whole experience is really more of a marathon than a sprint. There are a lot of ways that it's like a long road trip with different phases and chapters. And for most people, it's not a trip that you planned for.
Most of you listening today may have already been on this road for some time. You could say this journey started with a diagnosis of cancer or other blood disorder. There might have been a treatment phase even before BMT, then BMT and now GVHD. As you may have already experienced and is typical of the GVHD portion of the journey, is there can be lots of unexpected twists and turns, detours and roadblocks, sometimes new sailing, and sometimes stormy weather.
03:35 It's also a road trip where we don't actually know the final destination and we don't know how long it's going to take to get there. So, it's really quite different than if you have a broken bone or a specific surgery where there's a beginning and a middle and an end. And then we kind of get back to where we started. Given this difference, we need to prepare differently and cope differently, which is really what this talk is about.
Also, on this journey, we'll see that caregivers are the ones that are in the driver's seat for the most part. And in some ways, they're the whole vehicle that everybody depends on. So, that is the metaphor we're going to be working with today.
04:14: Caregivers are co-survivors: So who are we talking about when we refer to caregivers? Lots of different people. It can be spouses, partners, parents, adult, children, siblings, friends. Typically, there's a primary caregiver. They're the givers of care in this journey but when we're talking about care, we're not just talking about physical or practical but also emotional support, social support and even existential and spiritual care at times.
Many family members don't actually identify as caregivers. They'll say, "I'm the partner, or I'm the parent. Of course, I'm here to support and provide care." And that is true, of course. But you also are taking on caregiver roles that are specific to this situation and they're important to acknowledge. You're what we call informal caregivers, as opposed to professional caregivers, like doctors, nurses and home health aides.
This is an important distinction because unlike professional caregivers who go home at the end of the day, you're on the clock 24/7. And in addition, along with the patient, you're living the experience of cancer, BMT and GVHD yourself. So in that way, you're also co-survivors or sometimes called secondary patient. And we don't really have a good term that encompasses both the caregiving aspect and the co-survivor aspect. So that's why you'll see, I use the term family caregiver to try to acknowledge both parts of that experience. And I kind of see you as both taking the hands of the patients and offering care, as well as walking hand-in-hand with them.
05:52: Caregivers for transplant recipients must juggle many new responsibilities: In the context of BMT, the family caregiver role is particularly important. In fact, having a caregiver present is often a prerequisite to getting a transplant in the first place, given how tough treatment can be and how the patient needs help and care as they recover. The caregiver provides care to the patient but also manages everything else, if you will, home, family, work, so that the patient can focus on recovery. And the caregiver role, of course, doesn't occur in a vacuum. It's not like the world stops. So it's important to acknowledge that the caregivers are often also juggling multiple roles.
There are new roles related to BMT recovery, and essentially, you're getting kind of on the job training. There might be some temporary added roles that perhaps the patient used to do but can't at the moment that you take on. In addition, there are interpersonal role dynamics that are affected. So what I mean by that is, for instance, if you have a partnered couple who are used to sharing kind of equal roles in their relationship, they may now experience unequal roles of let's say nurse and patient, where one partner is more dependent on the other and that isn't always easy. And all of these roles change over time, and also according to the phase of the journey.
So what are we talking about when we talk about these roles? There are so many... There are obvious roles related to medical care and we might put those in the category of nursing roles. So hands-on care, monitoring of symptoms, trying to determine when and if medical care is needed, could be managing medication, or wound or skincare.
There are roles related to being an advocate for the patient, especially when the patient is very ill or fatigued. So this might involve gathering and digesting medical information, being the go-between between the patient and the doctor. And helping them understand each other and make sure important information is transmitted.
Another role is as communicator to family and friends, providing updates, fielding calls of concern and well-wishes. Perhaps even being a bit of a gatekeeper and deciding who visits the patient and for how long.
There's quite a lot of work in terms of managing the medical care, like scheduling and getting to appointments, coordinating help. And then of course, there's managing all the things at home, like finances, home care, yard care, childcare, pet care, food prep.
And lastly being a cheerleader, if you will, to the patients and family members. So a source of psychological support in trying to keep spirits up and be strong for others. And interestingly in the literature, it shows that this actually is one of the more challenging aspects of being a caregiver.
08:53 Additional challenges for caregivers of GVHD patients: So there are some additional special challenges that often come with GVHD. In many ways, it's more like a whole new illness that one is dealing with. And sometimes patients and families talk about having traded one set of problems before transplant for another set after. Often, this part of the journey, as this part of the road trip as we talked about, lies unpredictable terrain with unexpected twists, and turns. Multiple body systems can be affected and treatments such as steroids or immunosuppressants can add their own challenges. And it really can become a chronic disease that lasts for months and sometimes even years, because GVHD requires specialized treatment. In many ways, it's more like a rare disease.
And because of the physical changes and being on immunosuppression and different aspects, it can lead to a sense of isolation, physical, psychological, social, both for the patient and the caregiver. And so, it's not really a surprise that that can tip the scales and feel pretty overwhelming at times.
11:22 Studies show caregiver stress is as great or higher than that of the patient. So, given all this, it's not a surprise that we know from the literature that BMT caregivers experience distress. And interestingly, their levels of distress are typically similar to patients and in some cases, even higher than patients. Caregivers also report physical and emotional fatigue, struggle to balance the needs of themselves and those they're caring for in their family. Many feel a great sense of responsibility for the wellbeing of their loved one. And of course, the sense of uncertainty and fear of unknown and guilt sometimes, if they feel tired or if they identify their own needs. It's of course often harder when the patient isn't feeling well or not doing well. And we tend to worry more. Or when outcomes are unexpected and the issue of expectations is an important one in terms of psychological adjustment, is something we're going to talk about today.
There are also positive outcomes. Folks do talk about newfound strength, closer relationships, growing and finding kind of gifts along the way. And so, it's important to recognize that it's not all negative.
In terms of the long-term impact, there actually are not that many studies and we are hoping that more are in the works. And there are two studies. One that I was involved with this first one that surveyed spouse-caregiver couples, who were two to 23 years post-transplant, an average of seven years transplant. And we asked them questions about their current quality of life at that time. And interestingly, we found that both reported fatigue, cognitive challenges, sleep, and sexual problems. The patients were worse off than the caregivers but the caregivers reported some of those symptoms as well. More than a control group, which were peers that were matched on certain criteria like marital status and education.
12:17 Caregivers feel less social support and loneliness than patients: The caregivers actually reported less social support and more loneliness than the patients, than the survivors themselves. They had an increased risk of depression compared to their peers. And they tended to be less likely to be getting help. So those survivors that were experiencing depression, were more likely to be getting help than the caregivers who were experiencing depression, for instance. There was another study that looked at an average of six years after transplant and found that the majority of caregivers were still providing some care to the recipient. And about 20% reported a poor quality of life.
13:00 Prolonged caregiving responsibilities can affect the immune system: Now we know from the general chronic caregiving literature, research literature, that that experience, that long road can negatively impact the immune system. There's kind of a wear and tear that can occur. And so, it's really important that we help caregivers take care of themselves, as well as provide support for their both physical and mental health and wellbeing, and so that they don't get ill as well. But there are also studies again, positive ones, that indicate that caregivers can be hardier and actually live longer than non-caregivers. And I think a lot of this, again, speaks to that growth and resilience that we're going to talk about. So, again, this is a marathon not a sprint. You might think about it as an ultra marathon. And it's really a different mindset. It's learning how to live with GVHD and adjust to this ongoing journey and thinking about what you can do to keep going and have a good quality of life.
14:03 Five factors that contribute to resiliency: So in that vein, we're going to talk about a roadmap to resilience. And one of the amazing things I've found about working with folks who are dealing with cancer BMT and GVHD, is the incredible resiliency of the human spirit. And the great thing is that we can build up and enhance our innate ability to cope and to overcome challenges. So what do I mean by psychological resilience? I mean, the ability to adapt and recover and bounce back from challenges. You can think of it almost as a kind of buoyancy. It can be about believing in one's ability to cope to problem-solve, to be able to deal with difficult events and emotions. And to be able to persist and persevere. Essentially, it's the ability to weather the storm and to remain standing.
So there are actually lots of different factors that contribute to resiliency but I'm just going to focus on these five today that I've found important in working with folks dealing with GVHD. And these are confidence, social support, self-care, flexibility and finding meaning or purpose. And I think and I hope that you're going to see through this presentation, how they're actually interrelated and positively impact each other to build this resilience.
15:28: Building confidence in caregiving skills takes time: So, let's start with confidence. So, it's really about building a confidence or competence base that we draw from, that helps us to persevere and to problem-solve. Now, of course, we don't typically start out that way. We don't start out confident. Typically, we start out pretty scared and nervous and uncertain but amazingly over time and actually generally pretty quickly, families and caregivers in particular really start to build a confidence and a competence-base in these new roles.
The thing is, if you're at the point of dealing with GVHD, you've already dealt with cancer or a diagnosis of a blood disorder and BMT, you already know a lot, you've gotten this far. So it's really about building on and adding information and skills to what you already know.
Now, most caregivers say transplant centers do a good job in preparing families for transplant in early recovery. But sometimes patients and caregivers feel a little less prepared for the transition home when the caregiver really slides into the driver's seat and the burden of care is more squarely on their shoulders.
So you could think about learning about that transition home, particularly with GVHD, is kind of like planning for the next phase of this road trip. And just like you would do in preparing for road trip, you might do some research and seek resources and talk to others who've been down that road before. Try different things out, find out what works for you. And that helps with that persevering and persisting and developing realistic expectations.
The great news is that others have gone down this road before you and they're great sources of information that are specific to the GVHD phase of the journey. The three main patient advocacy organizations that I always turn to in this area are BMT InfoNet, of course, National BMT Link and Be the Match, which is formerly known as the National Marrow Donor Program. They all have excellent written materials, online information, and presentations such as this one, as well as direct support.
17:40: BMT InfoNet, hosted a GVHD summit last year for patients and caregivers, and all of those presentations are on their website. The Meredith Cowden Foundation put on a national GVHD symposium. Be the Match has a Living Now series that takes families through what they might expect the first couple of years after allogeneic transplant.
All of these organizations have peer-to-peer programs. And I wanted to take a minute to really focus on those. So I have to say, there's no substitute for talking with someone who's been down the road themselves and who "get it" without you having to explain a thing. Not only is there just this sense of relief that you don't have to explain, but because they've been down the road, they've learned valuable tips and tricks that sometimes even the medical team isn't aware of. You realize you're not alone. It's pretty easily accessible through the telephone and internet. And all three of the organizations I mentioned have peer-to-peer support on call.
18:49 And BMT InfoNet, has run a GVHD caregiver support group. I was privileged enough to be able to be involved in one of those groups. And I have to say, I was really amazed at the sense of community that was created in that support group. Even though the caregivers were dealing with very different circumstances, some were spouse-caregivers, some were parent caregivers, different times on even just the GVHD journey, there was a sense of community and care and belonging and support from one another. That was really beautiful. It was really amazing.
19:30 Social support is important for caregivers: So this leads us to the second resilience factor which is social support. So peer-to-peer support is obviously a very important part of support, especially in the context of GVHD. But family and friends will likely be providing the bulk of the day-to-day support. It's important to remember that support can take many forms. And many different kinds of people can be sources of support and different forms of support. So not just, again, hands-on but also social, emotional, financial respite. Although the GVHD landscape has its unique aspects, there are a lot of social support tools that still apply.
So you might think if we are working with the road analogy and the car trip, you might think about social support as your pit crew and your toolkit for the road. And there are ways that they're kind of also your emergency toolkit. Should something happen, these are also people that you can call on so they can keep you going. And as well as you can call on them if there's an emergency.
20:42 Ways to communicate and seek help from your support system: So you may already be aware of some really useful technology tools that can be used to communicate updates to your support system and to coordinate help from them as well. Given a longer time period involved with GVHD, some of these tools can be especially helpful to keep people in the loop and to help them understand what you're dealing with and have a centralized place to post updates where people can see what's happening or sign up for help, it can decrease your burden. So you're not having to individually send emails or make phone calls or answer phone calls. The other thought is... One thing that can be helpful is to appoint somebody in your support system to be the person who post things... posts updates or manages the calendar system.
So you may have heard of this free web pages called CaringBridge or mylifeline.org. And they're private, they're password-protected. You give your loved ones a password and you can post updates. You can post pictures and then folks can write responses and replies. For the coordination of help, these other ones like Lotsa Helping Hands, CareZone and Meal Train, have calendars or lists. And you can indicate what you need and then folks can look at that and sign up for different things that they can offer.
22:19 How to help family and friends understand GVHD and your needs: Now, there are some challenges to GVHD support that I think that are important to acknowledge. Sometimes the support system, the family, and the friends, may not really understand what GVHD is or that it is this marathon, that it is sort of a whole new set of things that you're dealing with. It can be hard to ask for help and to keep asking, particularly if we are looking at a path that might be more on the order of months and years. The support system can fatigue, of course. And sometimes unfortunately help is not always helpful. It's not always exactly what you need.
So just some thoughts and tips about ways to manage help. One thing that actually a GVHD survivor mentioned in a networking group was, when she talks about GVHD to her family and friends, she tells them it's kind of like multiple sclerosis. And I thought that was a really great idea. So GVHD is such a specific thing that most people don't know about, but you might try putting it in a framework that other people might be familiar with, that might be able to understand. So, it could be multiple sclerosis, it could be Parkinson's. It's of course, very different but it just gives them a general idea that this is more of a longer-term chronic disease. You could point them to the GVHD information resources that we mentioned. Maybe they could read some of those or look at some of the webinars online.
One thing is to be ready with a list when people ask, "how I can help". So, you might in your mind, or even keep a little list in your bag of the different things. Gosh, it would really help if you could run to the grocery store for me, if you could take the patient to a doctor visit. In terms of that fatigue of the system, tapping multiple sources of support and remembering people that we don't always remember, like coworkers or neighbors.
Oftentimes people are so glad to help. They really want to help and it's a gift to allow them to help. They just don't really know what you need or what to do. And so, letting them know, actually, is super helpful for them. There are ways to be creative, so to make it kind of fun. So, I worked with somebody who... they really needed help with yard work. They did not have the bandwidth to do it. And so, they would, every couple months, typically at least seasonally, have a yard work party and invite as many people as they could, who'd be willing to come and do yard work for the afternoon. And then they would order pizza and soft drinks and have a bit of a party. So, there are creative ways to make it work.
I think one of the most important things in the differences with GVHD is building in support for the long haul. And if there's anything that you can unload and give to somebody else to just do for the foreseeable future, do it rather than having to ask again and again. And so, maybe if you have a child who needs to be picked up from soccer practice, you arrange with a parent that they just do it and you just have that off your own table.
25:49 Taking care of the caregiver's needs is important for both caregiver and patient: So now we're getting into self-care and I hope that at this point, you're beginning to see how important you, the caregiver are on this journey. And how much is riding on you and your wellbeing. And that you really are in the driver's seat but in some ways, you're the vehicle as well.
And so, if you think about it, like, what happens if you break down? If you break down on the side of the road, it really affects everybody. And so, you taking care of yourself is actually a way that you take care of your loved one and your family. It's not a selfish act. It really is an important aspect of providing care.
But I get that it's super hard. Folks talk about, they feel selfish thinking of their own needs. They're not the ones that are sick. They don't have time. If they don't do something, they feel like it won't get done. They don't want to bother other people, or they shouldn't need to take a break because they're strong.
And I hope you're beginning to see how taking care of your physical, emotional health is not... it's not only not selfish but it's one of the best ways you can care for your loved one. It is a lot to deal with, but you want to work smarter, not harder, if you will, and use available tools and resources like social support. It helps you conserve energy; it helps you go the distance. And that taking a break is a sign of strength, not a sign of weakness.
27:18 Strategies caregivers can use to make sure they are taking care of their own needs: So, self-care really encompasses all aspects of health and wellbeing. It's not just physical but it's emotional, social, spiritual. Again, you might think about that car analogy. If you were about to take a long car road trip, one of the first things you would do is check your car, make sure it's in working order. Make sure the tires are pumped up, make sure the battery is okay, because you don't want to get caught on that road with a car that's broken down. And then of course you would keep checking along the way, making sure everything is okay. And that's a way to think about your own care.
So, we're going to talk a little bit about kind of maintenance but also monitoring and building in to daily practice, both the checking and the self-care. So, this maintenance model, I hope this analogy is working for you but it's really... Like how can you keep yourself strong? Working strong? And what I mean by working smarter, not harder, is if you think about it like a car, it can run on flat tires, but it takes a lot more energy. It takes more fuel, and it causes a lot more wear and tear on the car and it could even cause damage. I mean, you could think about that even with oil. Like if you don't put oil in the engine, you might be able to go partway but at some point, the engines going to seize and then it's really a problem. And so, this idea of prevention and keeping things up, helps you to go the long haul and helps you not to have to work quite so hard.
One thing that occurs to me is we typically now in this day and age with cell phones, we're really good about plugging in our cell phones. We get home, one of the first things we do is plug it in, make sure it's plugged in all the time, make sure it's charged. We don't want to get caught with a dead battery. If we could embody that same orientation for ourselves, that would be great. So just always thinking about how can we recharge.
So physical well-being, I know you all are familiar with these. It's things like nutrition, hydration, staying hydrated, any kind of movement and exercise is important. It doesn't have to be going to the gym, trying to get sleep and rest. You can broadly think about yoga, massage, acupuncture, other ways of really taking care of your physical well-being and being mindful of unhealthy coping. And it's understandable that we might eat more, or we might not eat as well when we're stressed. And in the short run, it's okay but in the long run, it really undermines, again, that strong healthy body. And it's important to keep those checkups, those tune-ups, your own medical appointments to make sure there's nothing brewing.
30:15 How caregivers can take care of their physical well-being: How do you do it? I get that it's hard. There are different ways. Sometimes it's trying to do it first thing before your loved one gets up in the morning, going... sitting outside with a cup of coffee and just getting some time to recharge and some quiet time to yourself. You could be going for a walk. You might look for windows of opportunity. So if you're in a waiting room or arrive at an appointment early, could you leave your loved one in the waiting room and you go take a walk or go up and down the stairs a little bit and just stretch your legs? Thinking about it as a priority and scheduling it and protecting the time.
You could do it with someone else, do it with something you enjoy. And that would be combining social support and some pleasure as well as let's say movement or exercise. And if you can notice the difference in it, that will be reinforcing. If you realize God, it makes it... I feel so much better when I take the time to do this, I need to remember to do it.
31:20: How to cope with stress: So, in terms of coping with stress and tension and that kind of wear and tear on the body, you can think of two things. One is to burn off the stress. So that's more movement stretching, exercise, physical activity, which actually helps not just with the physical well-being but also with sleep and mood, depression, anxiety.
You can also think about turning it off. So, helping the system kind of calm down and calm down with relaxation techniques, prayer, meditation, respite. There are a lot of really good apps now that are free on the phones that have different relaxation, guided imagery recordings. Those can be great.
32:01 In terms of respite, you need to unplug, you both need to unplug. Sometimes the medical can feel like it's there all the time and you're always thinking and breathing it. And so, taking a break from the medical or even from each other and having a support person come and stay with your loved one, while you take a break. Doing something that helps you feel normal like reading or walking or crochet. I mean, those are superficial things, those are actually ways that you can recharge your battery and take time for yourself.
32:38 Caregiving can be a roller coaster of emotions: There are lots of feelings and folks talk about the emotional rollercoaster of this journey, swinging from fear, hope, frustration, relief, guilt, gratitude. And there are a lot of losses that you the caregiver experience yourself. So, the loss of your imagined future, how... The things that you guys used to love to do together and can't do now because of physical restrictions or immunosuppression or fatigue, issues of identity or work and so forth.
33:14 It's important to find a way to give voice to your emotions: And so, it's important to process some of those and give voice and work through them, particularly, when caregivers often feel the need to hide emotions or be positive or not burdened and they kind of hold that all in. So, there's different ways to do that.
There's actually quite a lot of research on the very, very positive impact of expressive writing. So, writing deepest thoughts and feelings about a stressful event for a limited period of time, like 20 minutes at a time, and doing it repeatedly. It's kind of like journaling but it's more focused. But it's interesting. It's similar to talk therapy, in that it is a way of both expressing and processing the thoughts and feelings. And obviously there are other ways to do it as well as you see here. And it could be talking and sharing with others.
But the idea is to give voice and to essentially grieve these losses, which helps us to get to a point of accepting, "okay, this is what it is and how can I move forward and make the best of it?" So, that acceptance is not surrender. It's really the freedom to move forward.
34:34 Do a daily check-in of how you are feeling: So one thing we can think about is trying to build in a daily check-in, could be in the morning, where you check in with yourself or a periodic through the day, how am I feeling physically? How am I feeling emotionally? And so forth? It's kind of like when we get in our car and we would check, is there gas in the tank? But if you forget to do that, the good news is you have a built-in system that is going to tell you for you.
And I think about that as the warning lights on the dashboard. So if we forget to put gas in the car, there is that little signal that lights up, or if the car starts to overheat, it tells us. And we human beings have a similar system. And so, if we start to feel certain emotional or physical symptoms, these are warning signs, they're kind of trying to bring attention. It's like a little bell saying, "Hey, pay attention. Something is off balance here."
So, you might... just keep an eye out for signs of burnout or changes. If you're feeling down, if your weight changes, if you find you're using more caffeine, not taking care of your physical needs as much, crying easily or feeling irritable or having any kind of physical symptoms. These are all ways that our body has this wonderful system to bring attention and bring awareness so that we can address those things. Of course, if you are experiencing significant symptoms of depression, anxiety, please get in touch with your own doctor.
36:07 Professional counseling can be helpful: Another source of support, I think of this both as social support and as support when those warning lights are going off, is individual professional counseling. And so, the great thing about this is it's private, it's confidential. It's scheduled time for you. Generally, we're really good about making appointments. Sometimes we're not so good about making time for ourselves but if we have an appointment, we'll go. And it's time where it's just you. And there's no concern about burden. You don't have to worry about burdening anyone else.
Families and couples, counseling can help with problem-solving or if you have any communication difficulties or issues of intimacy, sexuality. And insurance covers this, usually. Or you might be able to tap your employee assistance program at work. So really think about this... And I see folks this way and I really think about it as normal people going through abnormal circumstances. And so, really providing that help and support. It doesn't have to be that you're experiencing major depression or generalized anxiety. You can be experiencing milder adjustment issues and still really benefit from counseling support.
37:28 Being flexible and gentle on yourself can help deal with caregiver stress: So, here's another one, which is flexibility, adaptability. So, one of the things about this road, it can feel like you're constantly rerouting and recalibrating and there's a detour and you have to switch gears. And that can be challenging. And so, one thing is to try not to look too far ahead. Just take each day as it comes and kind of do the best you can. Control what you can, focus on your health. Focus on the day-to-day. And in a sense, not try to look too far ahead. I think really importantly, give yourself credit, use self-compassion, gentleness. This is a tremendous job you're doing, and it isn't easy and you're doing the best you can. And you're learning on the fly and there are no mistakes. It's just learning.
And being able to have a sense of gentleness with yourself, a sense of humor. And being able to engage in creative problem-solving together to find new ways of doing things. If the old ways aren't working... You're not alone and your survivor is not alone, you're all in the car together and you can problem-solve together and come up with new ways of doing things. And I think hopefully, you see that the more mentally pre-prepared you are in terms of expectations and information, socially supported and physically emotionally strong, the better you'll be able to quickly adjust course as needed. So if you think about it, if there's something in the road, if your tires are pumped up and you're alert, you're going to be able to swerve no problem and navigate those unexpected things that come in the road. And so, that's how all these things come together.
39:15 Get perspective on how far you've come and accomplished: So lastly, the last area of resilience is perspective and meaning. It's important to periodically stop and get out of the car on this road trip and take stock and notice progress and see how far you've come. I've worked with folks who felt discouraged. They felt like, wow, it's taking so long for me to feel better. And the fatigue is still so bad but when we kind of... And they were often referencing before transplant but when we kind of stopped and zoomed out and looked at, well, how were you feeling during transplant and immediately afterwards? The person was able to say, "Wow, I actually have come a long way." And yeah, of course it's not where I was pre-transplant but boy, have things improved since transplant.
It can be important to remember why you're doing this. And one thing that is amazing, even when it's challenging, the vast, vast, vast majority of individuals and families will say, "I would do it again. I would do it again." Give yourself a lot of credit, consider a gratitude diary. So that is a way of really bringing to mind, bringing forth, if you will, all the positive that come up along the way. And there really are a lot of things. And that's the thing about humans, we're incredibly resilient. So many folks talk about how rewarding caregiving is, what a sacred gift to be able to care for someone, especially when they're very vulnerable. It changes our sense of appreciation for life. And its amazing how caregivers will say, "I never thought I could do it. I never would have imagined I could have come this far. And been this strong."
Oftentimes, folks feel closer to one another. They feel a greater sense of compassion. And it feels good to give back. It feels good when they see another family or in those peer-to-peer connections, ways... the things that they share that then makes the path a little easier for somebody else. And that's very, very powerful.
41:26 Summary: So lastly, in summary, I hope this has given you a sense of how crazy the road, the GVHD road can be, how you guys as caregivers are really critical to the success and well-being of your loved one and of your family and of you. And that you're in the driver's seat and you're in a sense of the vehicle as well.
But that there... You can build resilience for this journey. And building confidence, competence and grit to persevere, problem-solve, building social support and connections that help provide help respite and a sense that you're not alone, building in self-care and self-awareness, and understanding that checking in with yourself daily, if you can, and heeding those dashboard warning lights, is essential to being able to manage this road and continue on the journey. Building your capacity for flexibility, adaptability and understanding that this is the nature of the road trip, these unexpected twists and turns. But with confidence, social support, self-care, maybe a little humor, patience tolerance, we're better able to shift gears and navigate more comfortably those hairpin turns and not get discouraged by the traffic jams.
And finally, building capacity to keep perspective, find meaning and purpose, notice the small kindness and blessings along the way, we're better able to weather those storms and bounce back from the challenges and embody resiliency. Thank you so much for listening.
Question and Answer Session
43:10 [Moderator] Thank you so much, Dr. Bishop. That was a great presentation. I learned quite a bit. I'm sure others on the call did as well and probably have some great ideas to share. Now is the question and answer portion of the presentation. If you have a question or if you have a comment, please use the chat box at the lower left-hand of your screen, type that in and we'll try to get to as many of those as we can. And we have a few already. This one actually, I may be able to answer.
43:49: Andrea wants to know whether it Be the Match provides services to allogeneic stem cell transplant patients, where the donor was a family member rather than an unrelated person?
And I can tell you the answer to that is yes, they do. For the most part, if you're talking about financial aid, there will be some restrictions on that but in general, the social services, the psychosocial services and all of their website information is available to people who had a transplant with a donor from the family.
44:14 We'll go to Suzanne. Suzanne had an interesting question. She said, can you discuss the way the relationship can change when the primary caregiver turns out to have an actual or potential cancer diagnosis?
[Dr. Bishop] That's a great question. And that's very much speaks to the fact that these experiences don't just happen in a vacuum where everything else holds still and there's only one thing to deal with. And sometimes absolutely that's the case where, the caregiver or other family members may have medical issues going on or other issues that are going on. So, yeah. That's certainly not a simple answer but I think about issues of balance of there may be ways that each person can try to support the other but certainly it's going to be especially important to build in a lot of that outside support to the extent that that's possible, whether it's other family members, whether it's friends. It could be having folks take over more of the transplant survivors needs.
Let's say getting them to their appointments or taking care of their needs so that the primary caregiver can then have the space, the bandwidth, the time, the energy to go to their own appointments. It's hard. What I would want to do is ask more specific questions in terms of what the particulars are in that family situation. But I guess I think generally about expanding out all of these ideas where you're... It's like both the transplant survivor and the caregiver are in the center, both providing some care to each other but really more it's about each of them needing help and support. And then trying to balance that help and support. But that's a really... it's a really challenging situation.
46:52 [Moderator] All right. This next question comes from a GVHD patient. He wants to know if you have any suggestions for caregivers who stubbornly resist the idea of taking some time away for themselves.
[Dr. Bishop] Well, I really appreciate that the survivor is the one who's saying, please caregiver, please take time for yourself. Because sometimes it's... we forget about the caregivers and their needs. So, that's fabulous. So, one side is... And you probably have already tried this but to say... You could put it in your terms. So, to say, what would really help me? What would really feel supportive to me? What would be a way that I feel like you could show? I mean, you're showing me how much you care in so many ways but here's actually another way you can show me how much you care about me is to take care of yourself, because I'm starting to worry about you.
And I will feel less worry, or I will feel less guilt or I will feel less burdened, if I know you're doing everything you can for yourself, it really helps me. It's actually a way that you provide care to me. So, you kind of help them understand that... Again, it's not a selfish act and it sounds like you're worried. And it sounds like maybe a little frustrated too because you understand how important it is.
I think sometimes connecting with other caregivers can be helpful because you can hear it from them, maybe more easily, folks who have been down the road and who have said, yeah, I thought I could do it without taking time for myself. And then I ended up getting ill myself or I realize now how important it was. And so, sometimes it's easier to hear it from others who have been down the road. I think as a psychologist, I would want to try to understand what's getting in the way. Is it that they feel like it's not okay in some way, that they feel...? Sometimes caregivers will feel like if they to step away and something happened, they would never forgive themselves. So, they sort of feel like they have to kind of be there all the time. And so, then it's more of a problem-solving issue of building in someone else who can... that's kind of the respite care model. So, someone else who might be able to come in and be present, that the caregiver trusts so that they can take some time for themselves.
So sometimes it's looking at like what psychologically is happening. Sometimes it's more of a problem-solving issue. Sometimes it's getting information, understanding that there can be aware and tear. And it can affect health ultimately not only is that bad for the caregiver, but it isn't good for the patient either. So hopefully, there was something in there that was helpful to you. That's a great question.
50:22 [Moderator] Another good question is actually from somebody who's going to be a caregiver for her brother-in-law, who’s transplant has been postponed for a couple of reasons. She said, “you talked about the treatment center providing good information about what to expect during and after the transplant. I do not feel that the hospital is doing a good job of preparing us for the future. I've done a fair amount of reading and research, but my brother-in-law is very reluctant to look ahead. Do you have any ideas about how to talk with the center about the lack of preparation and also encourage my brother-in-law to be ready?”
Dr. Bishop] That's a great question. And it is amazing how different centers are different in how they prepare patients and families and caregivers. I think if you aren't feeling like you're getting what you need, it sounds like you're already doing an excellent job, yourself, which is researching yourself. And hopefully, some of the resources we talked about today, particularly those three organizations. What are places that you have found helpful information that will meet those informational needs that you have? And certainly of course, always talking with folks who have been through it before is helpful.
It's interesting what you're saying about your brother-in-law not being somebody who perhaps wants to look too far ahead. It is interesting, like people are different. For some people getting information is a primary way that they cope, and they find it really helpful. So, the more information they get, the more equipped they feel, the more ready, they've got expectations, they know what to do and where to go if they need help. But interestingly... And so, they're information seekers.
For others, it actually is more anxiety provoking. And they actually called information blunders. And so, they're folks for whom information can start to make them feel anxious and overwhelmed.
So, I don't obviously know you or your brother-in-law, I don't know if that fits this particular scenario but I think it's sort of maybe finding a balance and being curious and being gentle about... You might notice... It could be that more information isn't helpful for him, even if it's helpful for you. And if you're going to be the caregiver, that actually might work out okay, because you're going to be prepared and be able to again know what to do. And he'll be able to rely on you, how lucky he is to have you in that position.
And so, you can have conversations with him too about, what might be... Can he say what might be helpful or does he find it overwhelming to get a lot of information? Have there been any past experiences of... I don't know. Challenging times that you could draw from and say, Oh, remember in that case, it was helpful to have information or maybe it wasn't. And then certainly, communicating with the transplant center. And I think, sometimes when you find resources, it's useful to bring it back to the transplant center, particularly maybe the transplant coordinator or social worker, case manager, the team and say, "I realized I didn't feel like I had all I needed. I found these great resources. I wanted to bring them to your attention. This might be helpful for other patients." And that's the way that you also are giving back and making the road easier for those to come. So, thanks for the question.
54:28 [Moderator] Thank you. And we have two more questions and I think that will be all we have time for. The first one is from a caregiver, it says,” I traveled cross country to care for my brother for the first hundred days or so but I need to go back home to my life and my spouse. And I feel worried because there's no other family member to step in, what can I or should I do?”
[Dr. Bishop] That's a great question. And what that brings to mind, too, is that caregivers sometimes are caregiving from a distance. So, I think, how wonderful that you were able to be there during that more acute and early recovery phase. I imagine they'll be ways that you will continue to provide support and remember that support takes many forms and it can be the emotional support or checking in or even helping the patients problem-solve issues as they come up.
I don't know if you're in a position where you could help the patient or identify someone in the patient's locality of a friend, maybe your... or a neighbor, who's like a point person there. And then you kind of touch base with them, with the patient's permission. And then maybe together, you support each other to support the patient so that local person might be to help with some things, at least be an emergency backup or provide some transportation or be able to help identify other people that are right there close by.
If it's near a transplant center, sometimes the transplant center or... Like some doctors’ offices actually have case managers and social workers who work in outpatient settings. Typically, that's a more geriatric setting but sometimes tapping local community resources. Again, the one I'm thinking of is more for older folks but like elder care, elder options but there might be other ones through the united way. So kind of local community-based support that might not be cancer or GVHD or BMT specific but might still be able to provide help.
So, it's tougher from a distance. And you can see as you go, because as we talked about the landscape changes, so, the extent to which your family member needs help may name wax and wane. But hopefully that might give you a few ideas to just get started.
57:26 [Moderator] All right. And then our last question and I'll chime in here as well. What advice do you have for caregivers in the time of COVID? And I just want to chime in and let folks know that next Tuesday, November 10th, BMT InfoNet will be hosting another webinar called, COVID-19 Winter Update on what Transplant Recipients Need to Know. So that might be one thing that you can do. And Dr. Bishop, do you have any other suggestions for how caregivers can manage in the time of COVID, be it keeping their patients safe or it could continuing to have some social interactions, even though we're being told to distance?
Dr. Bishop] Yeah. So I'm so glad that you're providing the webinars and those very focused presentations. They're so needed at this time.
When we... The last GVHD caregiver support group that we did was this spring and it was right in the midst of the beginning of the pandemic. And so, this was definitely an issue that was coming up a lot. And here's a little bit of humor that came up, which was that a lot of the caregivers were saying, they were so used to having to deal with precautions, like wearing masks and washing hands and so forth from caring for their transplants survival, that that aspect... it was pretty familiar to them and they were veterans there. But of course there is the added anxiety of possible exposure and... that both for their loved ones but for them, like if they were to get exposed and then expose their loved ones, just a tremendous sense of responsibility there.
And so, being extra, extra careful, can create a greater sense of social isolation and some frustration too, sometimes. I mean, it's different in different communities now but there was a time when the caregiver couldn't go in with a patient for the patient visit. That again varies. I've had some caregivers, who've... what they've done is the patient goes in to see the doctor, but they had the caregiver on the phone with the doctor or on speakerphone so they can actually be present in the visit.
Certainly, to your point Sue, in terms of the social isolation, if it's available to you, using the internet, using Zoom or other video conferencing like FaceTime. So the phone is helpful but it really is amazing, how... The difference it makes to see somebody in-person and... like any experience, whether it's GVHD or whether it's the pandemic, there these kind of little bright spots that come through and I've worked with folks who ended up seeing and connecting with family and friends or even celebrating birthdays, let's say together on Zoom in ways that they wouldn't have, if they had been in-person, they would... These are people who were far away and they wouldn't have been local and part of the celebration.
So, in some ways folks have felt reconnected or more connected but obviously it's different than in-person. Some folks have been very creative about if you live in a place that's not too cold or not too warm outside, to get together with a lot of physical distance, outdoors with masks but at least to be outside and to be able to see people in-person. So of course, again, there's the resiliency of the human spirit, that ability to be creative. But there's no question that it's adding a whole other layer of challenge. And particularly for those who need help from the outside to come in, really trying to... If you can, make sure that those organizations are doing all they can, in terms of home health and support, in terms of precautions. And so, it's definitely a challenge for all.
01:02:01 [Moderator] Where to get more information: All right. And with that, I think we'll need to end the webinar. If you would like to re-listen to Dr. Bishop's presentation, we have recorded it and it will be available for viewing just by clicking the same links that you clicked in order to get into the live presentation. Or in a couple of weeks, we'll have it on our website and you can visit it there. As you leave, you'll be asked to complete a survey, please do that. That helps us understand what's helpful and what's not, so we can do a better job for you in the future.
And if you have any questions and need any sort of assistance, I want to make sure that you know that you can contact BMT InfoNet. Our email, our phone number and our website is on the screen there, even though we are not all physically in the office, we take our phone calls from our home and respond very quickly. So please do reach out to us if you have any questions or any needs that, because that's our purpose. So have a great rest of the day. Again, thank you to Pharmacyclics, an AbbVie company and Janssen Biotech and Incyte for making this webinar possible. And we thank you.
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