Caring for a Loved One with GVHD

Learn tips for coping with the physical and emotional demands of being the caregiver for a person with graft-versus-host disease.

Secure Your Oxygen Mask First: Caring for a Loved One with GVHD

Presenters:   Michelle Bishop, PhD , Clinical and Health Psychologist; Sung Choi, MD, MS, University of Michigan, Pediatric Hematology/Oncology

This is a recording of a workshop presented at the 2019 GVHD Summit.

Presentation is 37 minutes, followed by 21 minutes of Q&A.

Summary: Being a caregiver for a transplantrecipient with GVHD presents unique challenges and stresses. Through regular personalized self-care, community support and a focus on leading a meaningful life, the physical and mental toll of caregiving can be managed.

Highlights:

  • Getting a solid understanding of GVHD and setting realistic expectations and goals can be empowering for the caregiver and patient.
  • Peer-to-peer support with another caregiver who has experienced your journey can provide support and understanding.
  • Setting up counseling with a professional therapist before problems get out of hand can give you a safe place to talk about feelings and make a reasonable plan of action

Key points

13:12 Many spouse caregivers report experiencing fatigue, poor immune system, cognitive difficulties, sleep and sexual problems due to the unrelenting stress of caregiving.

16:19 Self-Care is not a short-term fix but a daily practice to manage stress.

21:29 Therapy is a safe place, where set your priorities and create a workable plan of action.

26:44  Make asking for and receiving help fun. Need help with yard work or a big project? Make it a party and invite your community to come and pitch in and have an ice cream.

27:35 Think broadly about self-care. Practice doing a daily self-check-in to see how you are physically and mentally doing. That information can drive what you do for self-care.

29:22 Physical wellbeing fuels your stamina and making small choices such as eating well, resting and staying hydrated make a big difference.

30:53 Transition to a time of relaxation, prayer or meditation by expelling stress through a physical activity.

32:20 Find ways to feel normal such as taking a day or a few hours and not talking or focusing on medical struggles.

33:13 Writing is a proven way to process loss, uncertainty and the changes in your life.

36:29 Identify the things that are meaningful to you and adapt them so they can fit into your present life on a regular basis.

Transcript of Presentation

[Moderator] My name is Peggy Burkhardt, and I'll be your moderator today. We're looking forward to hearing from our speaker and panelists today, and we will have questions once the presentation is complete. And there'll be plenty of time for questions. Please join me in welcoming Dr. Michelle Bishop and Dr. Sung Won Choi.

Dr. Michelle Bishop, is a Clinical and Health Psychologist with 25 years of experience helping families and patients coping with the psychosocial aspects of cancer survivorship, and caregiving. She has spent 10 years as a Research Assistant Professor in Hematology Oncology at the University of Florida, studying the quality of life of blood and marrow transplant survivors and their caregivers.

Dr. Sung Won Choi, is an Associate Professor in the division of Pediatric Hematology Oncology BMT Program at the University of Michigan Medical Center. Her research focuses on the prevention and treatment of GVHD.

I will now have Dr. Michelle Bishop come on up. Welcome.

00:01:23  [Bishop] Thank you so much. Thank you, Peggy. Thank you all for being here today, I hope it's been a good day so far in terms of the conference? Good. BMTInfoNet and their team, Sue Stewart and her team are just amazing at what they do, their organization and these conferences that they put together. So I thank them for that, and I certainly thank them for the opportunity and privilege to be here with you today.

00:01:49  Objectives of the Presentation: So today, this hour is devoted completely to you, to all of you who care for, provide love, care, support, management, coping for those who are dealing with GVHD.

And we wanted to make sure to have an hour devoted to acknowledging and validating your very special role, really a critical role, your experience and all that you do, and you do so very much.

And we know it's extremely difficult to manage and to balance the needs of your loved one, and your own needs. And so the focus today, for the first half, is really on the importance of self-care, and how do you take care of yourself while you're trying to take care of your loved one, and everyone else. It is no small task, and so I hope that you leave here today, certainly feeling that you've been heard, and you've been given some ideas for how you might care for yourself as you're on this journey, and some resources out there that are available just for you.

00:03:00  What is a Family Caregiver? I just wanted to start though in terms of the term, family caregiver, because a lot of folks are uncomfortable, or don't identify with the word caregiver. We tend think caregiver, we tend to think professional caregivers, so a nurse, or a home healthcare aide whose paid to come into the home and provide care. Most family members, at least that I work with, will say, "Well, I'm not the caregiver, I'm the spouse, or I'm the husband. It's just what I do, it's just my job," and that's absolutely true.

Part of the good point of using the word caregiver, is to try to identify and delineate that, there are though a number of roles and a number of tasks that you are taking on in this process, that are really above and beyond what you might have expected in your role as a family member.

And I'm also using a very broad definition of caregiving, so providing support, help and care, not just hands on caregiving. And in terms of who, again, broad definitions, spouses, partners, parents, adult children, siblings, friends. You might be somebody who's the primary caregiver, so sort of the go-to person, secondary, or maybe a more peripheral family member, even somebody who lives far away, but still wants to provide support and care, and is trying to figure out how to do that. So there are lots of different types of caregivers, and caregiving.

00:04:25  The two really kind of important things I wanted to highlight was, we're talking about what we call in the medical field, informal caregivers. So you're not paid professionals, and you don't necessarily have a degree in caregiving. You're really learning on the job often times. And the big thing is, you aren't a professional caregiver who’s on the job, and then goes home, you're on the job 24/7. You are living this too, this is your experience too, and so that complicates things, or adds to the experience I should say. And so we struggle in the medical field to figure out what kind of word to use, what label to use.

Sometimes we talk about co-survivors, because you're surviving too, or forgotten survivors. We've talked about second order patients. So we have the primary patient, and then the second order patient. It's a struggle, and so please understand that when we use this, or at least when I'm using a term family caregivers, I'm trying to use it broadly, and really trying to acknowledge you not just in the roles of what you provide in this situation, but also you who are experiencing and living it every day. And really, it's a family affair. I think we might sometimes do a session that's coping with GVHD, a family affair, because it's all of you muddling through, trying to figure it out.

Each individual in the family, you have shared experiences, and you have unique experience, so obviously today, we're focusing on your unique experiences.

00:06:05  First phase of caregiving – preparing for transplant:  So if you're here today, and you're dealing with GVHD, it means you started this journey quite some time ago probably, and that was with a diagnosis of cancer, and then BMT, and then GVHD. And I think one of the things... one of the framework that I like to use is thinking about it as, these are chapters in a long journey, in a long narrative, and the first chapter started some time ago. And of course, was a major life stressor, a life-shattering event, ripple effect, effected every aspect, every dimension of your quality of life, and of course, as I said, effects both the quality the of life of survivors and family caregivers.

00:06:46  Second phase of caregiving:  support during transplant:  When you moved into kind of the BMT arena, the family caregiving role, your role, became that much more critical, that much more important. Indeed, many transplant centers will not transplant a patient if there is not a designated caregiver, so you are front and center, you are critical to the process, certainly to the survival, but the healthy adjustment and the quality of life of the patient. And as you know, because you've been through it, you end up taking care of everything else while the patient is focused on surviving, and then getting well. The thing is, it doesn't occur in a vacuum, it occurs in the midst of ongoing life roles, right? Life goes on, and you're also trying to manage those things. And there are new roles, added roles, and then there are changes in roles.

00:07:32  So when we're talking about all of these roles, being a caregiver is not a single role, it's a whole host, and this is only a small sample of those. Of course, they're providers of hands on care, there are nursing tasks, there are physical hands on care that you find yourself doing, and hopefully your team... transplant team has taught you to do them.

Beyond that there are many, many additional roles. So certainly, one is being a patient advocate, being the voice of the patient when the patient is very ill and may not be able to speak up for themselves. Or, providing additional information, because of the unique perspective you have living, and observing, and being with the survivor. You might be gathering information, and monitoring symptoms, and then communicating that to the medical team, which is really a critical role, because often times without that information, they would not have what they need to make decisions... healthcare decisions.

You also are the communicator often to the larger support network that you have. So the communicator with family and friends. That can be a positive role, because you are receiving hopefully support, and concern, but it can also be stressful, because you are managing e-mails, and phone calls, and texts that are saying, "What's going on, and how are things," and you're trying to respond. And so we're going to talk about some ways to manage... some tools that are helpful to manage that. Certainly, they're the hands on tasks, driver, cook, medication manager, appointment scheduler. A lot of families talk about how this becomes a full-time job, or it feels like a full-time job.

00:09:17  Special challenges caring for someone with GVHD: And then the one on the bottom, provider of psychosocial support, interestingly, the research shows that, that actually can be really stressful. So you are often the cheerleader, or the person trying to lift the spirits for your loved one, which is a wonderful gift, but it's really hard to do when you yourself are scared, or you yourself are tired or stressed, and you're trying to not show that, and you're trying to be up for your loved one. And so that can be very, very stressful.

So that was chapter two, chapter three, the special challenges of GVHD, which is of course why you're all here. As you know, it's like a whole new illness that you're dealing with, right? It's not the end of treatment, it's the beginning of some new things, and those new things can be very, very challenging. Unexpected, unpredictable, uncertain, often multiple body systems are affected, and they can be very debilitating, and really affect certainly well-being, but also quality of life and lifestyle, right? If it's difficult for your loved one to walk, or to go outside, or to be around other people, that affects your lifestyle, and that can be very isolating.

00:10:38  And so, one of the things that families talk about and express is, feeling a great deal of isolation when they're dealing with GVHD. One thing is, most family and friends don't get it, they don't understand, they don't know what GVHD is, they don't understand why does it keep happening, why isn't it over yet. "Wait, weren't you just dealing with that a month ago?" And so that can be very hard.

Even your medical community that you go home to, if you're home from the transplant center, may not know all of the special details and information about what you're dealing with. So the go-to people, the medical people, might not have the information you need, so you may have to go to see specialists. So that's isolating, and that can be scary.

00:11:27  It can be isolating if the loved one is immunocompromised and you can't go out in crowds, it can be isolating socially and so forth. And that's one of the, I think, number one challenges in terms of kind of psychosocial issues.

The other thing is, as you know, treatments themselves can be challenging. So the condition's tough, but the treatment's tough too. So sometimes people talk about ‘roid rage’, so the treatment effects from steroids, and how it can change how someone looks, and feels, and behaves, and that can be really tough for the patient and for, of course, the family member. And certainly, it can be long-term, chronic, and so that caregiving burden is different than chapter one and two, but it can increase in some ways, and it can be extended.

00:12:24  The impact of living with GVHD on family caregivers:  We don't have a lot of data yet, unfortunately, on the direct impact of living with GVHD on family caregivers. Dr. Choi actually just completed gathering data on 1300 I think, just about, family members, who are dealing with it, so we're very excited that she's doing that work, and there are more studies in the pipeline to identify what some of the challenges are, which are going to help us then develop education and interventions.

But we have done some studies, and I was involved in one many years ago, that looked at long-term BMT survivors. These were folks who were 2 to 23 years post- transplant, and we had a subset of spouse caregivers that we also gathered information from.

00:13:12  Caregivers of transplant recipients still struggle many years after transplant:  And what we found was, at the time, really shocking, it's not going to be shocking to you, but that the spouse caregivers, even on an average of seven years after transplant, were describing fatigue, cognitive difficulties, sleep and sexual problems themselves. It wasn't just the survivors.

And in some ways they were worse off from the survivors, in that they reported less social support, and more loneliness, and they were less likely to be getting help. And I think part of that is because, in our medical system, we identify the patient as sort of the focus, and we don't recognize that the family's dealing with it too, and that they also need support, and so they get kind of lost in that.

00:13:57  For parent caregivers, post-traumatic stress symptoms are higher than the general population:  In terms of parent caregivers, which I don't have on this slide, and I'm sorry, I meant to put it on here, but the rates of post-traumatic stress disorder, or post-traumatic stress symptoms, so a kind of lower level of that disorder, is higher than what you'd expect obviously in the normal population. And I think it's because parents are witnessing their children go through this, and are helpless to do anything about it, and that it is literally traumatic.

00:14:31  We know studies on chronic caregiving, so not necessarily Cancer or BMT, show that it can have a negative impact on the immune system and the health of caregivers, which is why self-care is so important. And so that is something that is relevant to you all, but it's not all doom and gloom. I have found studies that show that caregivers can actually be heartier, and some even live longer than non-caregivers, and what that, I think is about, is the resilience factor, is if we find good ways to cope, there are actually positive benefits and rewards. A sense of purpose, a sense of meaning, and so forth that can come from that, and we'll talk about that.

00:15:15  So bottom line, not a surprise to you, it's a marathon, not a sprint. And indeed, I would say in this case, it's an ultra-marathon. So one of those 50 milers, or 100 milers, not just a 26 one. And so it really is learning about how to live with GVHD, how to adjust to that ongoing journey, and then what can you do to keep going, and maintain a good quality of life.

So self-care, it's vital. The patient's health and wellbeing depends on it, as does yours. And we use the analogy, put your oxygen mask on first, and I think it's a good one in that, if you really think about, if you're on a plane and it loses cabin pressure, if you're taking too long putting your... you're helping somebody else with their oxygen mask, you could pass out, and then you're in trouble, and they're in trouble. So the analogy's a good one. But I have to tell you, when I was putting these slides together, and I was thinking about the third chapter of GVHD, I was thinking there's probably a better analogy, and that's of car maintenance.

00:16:19  So if you think about it, if you have a car that has four flat tires, is low on oil, and low on gas, and you keep driving that car, it's going to be a problem. First of all it's going to take a lot more energy to get that car to go where it needs to go, it's going to start to really wear and tear, and damage the car, and eventually it's going to stop, and if you push it too hard, it's going to stop permanently. And I think about that in terms of what you all are dealing with, because it really is the long haul, and you are that car, and self-care isn't just in the short term in acute crisis setting, this is self-care for the long haul. This is how do you keep those tires pumped up, how do you keep the gas in the gas tank, and the oil in the car so that it can keep going, and it'll be much more efficient and much easier, and it won't have caused such wear and tear.

00:17:14  Barriers to Self-Care: And we're going to get to some of the ideas for that, but what are the barriers? There are huge barriers. Self-care is so hard, why is it hard?

First and foremost, I think people feel like they don't have time. They're doing so much that how can they possibly take time for themselves? Or they feel that it's selfish to do so. Or if they don't do all these things, it won't get done, so there's no choice. Not wanting to bother other people, not forgiving oneself if something were to happen if you were to leave your loved one in order to do something to take care of yourself and something happened, that you would feel guilty.

Often times family's members will say, they feel guilty if they're tired, if they complain, or if they take time for themselves, because, my gosh, compared to what their loved one's dealing with, its small potatoes. But again, if you don't take care of yourself, not only are you in trouble, but your loved one is in trouble. And so it really is important, and there are resources to help you with it.

00:18:14  Promoting Strength, Stamina, Resilience: So these are just some highlights in terms of different ideas for promoting strength, stamina, resilience. The first and foremost is information, and that's what you're doing right now, that's why you're here. You are equipping yourself. Understanding what you can expect, what is this all about, what does this mean, what is GVHD, what do I need to look for, what can I expect, what can I do about it, empowers you. Rather than feeling overwhelmed and paralyzed, you have a sense of, "Okay, this is challenging, but I have an idea that this is normal. Or I have an idea of what I can do about it, and that really changes things. It helps with preparation, problem solving, certainly increases a sense of control, and decreases anxiety and isolation.

00:19:01  Great resources for information about GVHD: The good news is, there are some really, really fabulous sources of information, and you found one of them, which is BMT InfoNet, and the other is National BMT Link. Peggy is here representing that organization. The third that I think of, is Be The Match, which was formerly a National Marrow Donor Program.

So these organizations are just absolutely phenomenal with the type of information that they provide, certainly written, webinars, recorded information, the symposia, the conferences that they put on, video learning library, and so forth. And many are specific to GVHD and caregiving.

And there's a hand out, that I hope you guys have, that looks like this, that has a list of the specific resources that I highlighted from these organizations. And if you don't have that, we can hopefully get you one.

00:20:01  Peer-to-Peer Support: One of the resources that these organization provide, that I'd like to really highlight, is the peer to peer information support. There really isn't a substitute, I think, for talking with someone, or talking with another family member that has been through what you've been through, especially given that this is like a rare disease, and there are so few people who have experienced it, and who really understand.

When you talk to someone who’s been through it, they just get it, you don't have to explain. They might have tips and tricks, there might be things that they learned along the way that would be helpful, you might have things that you could offer, and that can feel good. It certainly helps to decrease the sense of isolation.

And what's great is, you can do it by phone or by internet, in the comfort of your own home on your schedule. Going to a local support group is fantastic, but it can be challenging in terms of getting there, and if you miss it... it only meets once a month and you miss it, then you have to wait another month. And, will you find another family that's going through what you're going through?

So the likelihood of finding that family, and finding a match with all the different circumstances you're dealing with, are very high with these programs, and I have those programs listed as well as a couple of others on that hand out. And I do hope you will avail yourself after this session of the networking groups, because that is that same idea as a chance for you all to meet each other, talk to one another, share common experiences.

00:21  Professional Counseling: Now, I'm a Clinical Psychologist, so I'm going to put a plug in for counseling, but I'm going to talk about it maybe from a little bit of a different way than you might have thought about it. We often think about psychotherapy or counseling as a treatment when you're really in trouble, when something's really wrong, and I want to talk about it in terms of it being a resource. Something you might think about building in as a resource for you every step of the way.

A lot of the folks that I see, that is what we do. And the feedback I get is, that to have a place that is safe, that's confidential, that's just for you, that's scheduled, which means it's prioritized and you go to it, you make a point to go to it, scheduled your time where the focus is on you, and there's no agenda, and you don't have to worry about what the therapist thinks.

If you're talking to friends and family, which is wonderful, you may not share absolutely everything, or they might have an opinion, or... It's different, it's helpful, but it's different. And so, individual counseling I think as a resource, as a place to express, process emotions, thoughts, feelings, problem solve, it really can be invaluable.

Of course, family and couples counseling can be helpful too to problem solve. And the good news is, insurance usually covers it. Now, every state is different, every insurance plan is different, there are psychologists and social workers, and mental health practitioners that specialize in working with cancer patients and caregivers, like I do, but even generalists are going to be able to support you in ways that might be unique, and might be helpful to you.

00:23:18 There are also free cancer related counseling... brief counseling services available, and those are on the hand out. So Be The Match has terrific people who totally get BMT, because that's the world they work in, who can provide some short term counseling for you, as well as Cancer Care and some of the other cancer organizations.

00:23:44  Other Sources ipof Support: Now obviously there are other sources of support in terms of people support, friends, family, neighbors, co-workers, we can again think broadly, and they can provide a whole host of types of support. But I do understand that the GVHD landscape is different, and because it tends to be longer term, and folks don't always understand what's happening, or that it's still happening, and sometimes they might fatigue, in a sense, in terms of providing support, there's some unique challenges to that, and it can be hard to ask for help, and to keep asking.

00:24:16  So one tool that you may or may not know about is, setting up webpages through, for instance, CaringBridge.org, or mylifeline.org. They're free, they're very user friendly. And Facebook is great, but Facebook isn't always as private as a webpage like this is. And what's nice about it is, you can post updates, and you can even post educational materials if you would like to help your support community understand better what's going on. You can post pictures.

Sometimes families use it almost like a journal, where they're kind of documenting their experience. But your support community can go and see, "Wow, they're still dealing with this," or, "Oh, I'm so glad to see that they got some help with this." It's a place where you could also post things that you might need.

Some of them, like mylifeline, has a schedule... I mean a calendar in it, where you can actually put places where you could maybe use some help. Lotsofhelpinghands.org is another website that does that.

What I think might be different in terms of GVHD versus, let's say when you first get back from the transplant center is, you might need different kinds of help, and also that it might be good to think about putting in ongoing help, rather than a meal here and there, or help here and there, where you keep having to ask.

00:25:44  Managing Help:   But think about, "For maybe this period of time, my loved one can't do the yard work anymore, and it really would be such a help if I could get my neighbors to do that." And so you just build it in, you just ask them, 'Could you just take this over for now?" And then when things get better, you can take it off the table in a sense.

The other thing is to be ready when people say... lots of people say, "Well, let me know how I can help." Well, that's hard because then the onus is on you, right? And to go to them and to say, "Oh, so could you do this." If you have just a couple of things in mind when they say it, you might say, "You know what, gosh, I really appreciate that. Is there any way you could run a few errands for me, or you could sit with my loved one next week, because I actually have this going on. Or could you pick up Johnny from soccer?" And so kind of to be ready, because people want to help, they just don't know what you need, and they don't know what to do.

00:26:44  Be creative about how you ask for help: The other thing is that you can be creative. So I had a family that really needed help actually with yard work, and they didn't want to keep asking, so what they did was, seasonally, they basically had a cleanup their yard party. They invited everybody that they could think of, made a big day of it. Of course, many hands made little work, everyone had a blast raking, and trimming, and all this kind of stuff, and then they provided pizza, and drinks, and ice cream, and it ended up being this whole social event.

And I think for the family, it felt better, because it can be hard to receive help, and hard to be in a position where you need help, and this made it fun, and it made it this community gathering. And of course, everybody who volunteered had a great time, and it felt really good that they could do something.

00:27:35  Think of self-care both in terms of physical and emotional care:  So in terms of self-care, I think it's important to think broadly. We often think self-care, we think more physical, but to think self-care in terms of emotional care for yourself, social care, spiritual care.

My guess is you check in with your loved one every day, I wonder if you could try to practice checking in with yourself every day. So almost like doing a body scan, you kind of check in, "What am I feeling? What's going on in my body? What kind of... Do I feel tired? Do I feel irritable? Do I feel sad? What's happening?" And think of it as lights go on, on the dashboard, right? We're back to the car maintenance analogy.

So if something's lighting up on the dashboard, it's telling you watch out here's a low battery, or here's low oil, we need to draw attention to this, we need to do something about this, there's an imbalance. And then, as with the social support, thinking about how do you build in self-care as a preventive, not as a stop gap measure when things get really bad.

00:28:41 Signs of Caregiver Burnout:  Some of the signs of burnout, you're probably aware of, and this is like the dashboard lights going on, so if you're feeling exhausted, or changes in weight, or again, irritability, crying spells, certainly, if you start to... I mean, some of this you're going to feel, and it's par for the course, but if you start to feel these more intensely, or for prolonged periods of time, or they're really starting to interfere with functioning, or interfering with your relationship, with getting along, or with other things, please talk to your doctor. Please reach out and say, "Look, I'm overwhelmed." It is really a sign to stop and reassess, and say, "Okay, I need to reset here."

00:29:22  Physical well-being is the backbone of stamina:  In terms of physical well-being, it's the backbone of stamina, if you will. And I don't mean to give this list like it's a big to-do list, you've got enough on your plates already, but more to think about, there are lots of little things you can do that add up, that make a difference, little choices along the way. So if you have a choice between eating something that's more nutritive and eating something that's not, maybe try to go for the nutritive one, or to try to drink more and stay hydrated, to really prioritize your own sleep and rest. If your loved one is resting and taking a nap, think about taking a nap too. Yes, there's laundry, but there's always going to be laundry. And if you rest, it'll help you then for the longer haul. Pacing and stamina, we talk to patients about that, but it's true for family members too.

00:30:15  Keep all your medical appointments including preventative care:  Certainly keeping your own medical appointments, including preventative care, and that's the like the car maintenance. Like taking it into the shop every year for the tune-up, make sure you get your tune-ups. Because what often happens is, that keeps getting pushed aside, pushed aside, pushed aside, next thing you know, months, years go by, something accumulates in you, and then you aren't well. And that's a problem for you, but that's a problem also for your family. And another sign is to look for unhealthy coping, smoking, drinking alcohol, emotional eating. In the short terms they can help us feel better, in the long term obviously, they can cause problems. So just again, seeing that as one of those dashboard signals.

00:30:53  Coping with stress and tension. There can be a lot of buildup of tension, right? A lot of buildup. You're doing so much, you're pushing through a lot of buildup of emotions, and often people are kind of stuffing and containing, and it's almost like a pressure cooker, and it starts to build up to the point where it can pop, or it can explode. And so thinking about ways to actually discharge some of that physical energy through movement, and / or turning it off, or turning it down with relaxation. And often you have to do the first one first, before you really can relax enough into things like meditation and prayer, and so forth.

00:31:36  Take time for yourself:  I sort of alluded to this in terms of, we all talk about, yes, self-care's important, but how the heck do you do it. Sometimes it's doing it first thing, taking time for yourself, having a cup of coffee, reading the newspaper before everybody gets up. Sometimes it's scheduling it in, so like that therapy appointment, or a walk with a neighbor. Sometimes it's looking for windows of opportunity. You're waiting in a waiting room for hours, can you get up for a few minutes and walk around. Do a couple of stairs, or listen to a meditation app on your phone. Do something you enjoy, and notice if it makes a different, because that's the positive feedback you want to get.

00:32:20  Take a break from focusing on the medical:  If you realize, "You know when I stopped and took that nap, or I stopped and took a break, I felt different. Good, okay, let's do more of that." You both need to unplug. GVHD can kind of hijack your lives, it can feel like it’s everything, it's every schedule, it's all the medication, it's all the symptom management.

There are different ways of unplugging. Respite doesn't necessarily mean taking a break going away, or having somebody stay with your loved one, it can be even taking a break from the medical. So deciding as a family, "You know what, we're not going to talk about medical tonight. We're going to play a board game, or we're going to watch a movie, or we're going to look through our old photo albums, and we're just going to try to remember us," right?

Because this takes over and we can forget who we are, we can forget who we were as a family, as a couple, or ourselves. So things to help you feel normal, things to help you feel like yourself again.

00:33:13  Coping with feelings, loss, change. You guys are feeling a lot, obviously, through this: fear, hope, frustration, relief, guilt, gratitude, it's just up and down, twists and turns, a lot of uncertainty, and a lot of loss, right? A lot of loss of the life you had imagined, loss of being able to do certain things, loss of the imagined future that you had, loss of time, loss of independence.

And caregivers often feel the need to hide their emotions, or to be positive and not burden anybody, and again, that's, that stuffing, that holding in, but it builds up. And so thinking about ways to express and process those emotions.

00:33:59  Process Your Emotions: One way to think about it is, it's really kind of a grieving process sometimes. Talk therapy is one of those ways, but it's not the only way.

A lot of people journal, but there's another type of expressive writing that actually has about 20 years of research to support it, which is writing your deepest thoughts and feelings for 20 minutes at a time. You actually set a timer, so you don't keep going and get overwhelmed. But 20 minutes at a time, but at least four times. So it can be once a day for four days, once a week for four weeks, it turns out it doesn't matter.

There's something about getting it out, stream of consciousness, not trying to tell a coherent story, not even complete sentences, just talking, even if it's the same word over and over. Doing that, and then doing it repeatedly seems to help to not only get it out, but process and start to make sense of, and work through it, so that you kind of come to terms with it basically.

And it doesn't have that tension, or that pit that's in your stomach. And so that can be actually very helpful. It doesn't have to be writing, of course, art, music, photography, other ways of expressing and processing can be helpful. But I think again, part of that is about grieving what used to be, and acknowledging, and feeling sad and crying, and whatever it is that you need to do, helps us to then accept what is, and then to move forward with what will be. And to then find new normals, to find ways to adapt, to find things we used to love to do, are there different ways we can do it.

00:35:43  Maintaining Hope and Courage: Again, a family I worked with, they used to love to travel and hike. Well their loved one of course couldn't walk any great distances, and couldn't be outside because of the sun. And so they started to travel with another couple, and the other couple, one of the members also had some mobility issues. And so they traveled together, and then two, from the respective couples would go hiking, and then they'd all come back and they would enjoy an evening together. And they just found a different way to travel. It wasn't the same, and they missed the old life, but they found a good life nonetheless. And so sometimes it's about really slowing down, and taking each day as it comes, and changing those expectations.

Life is different with GVHD and after GVHD, and sometimes things take longer and are more difficult. But again, focusing on what's important, what's meaningful. Usually it's relationships, it's connection, it's children, it's animals, it's nature, and so trying to identify what are those things that are really meaningful to you, and can you have that in your life, and have that ground you and maintain your sense of self.

And one of the things that has always, always struck me in this work, doing this for all these years, is the incredible resilience of the human spirit. People say, "How can you do what you do? Isn't it depressing to work with folks who are dealing with cancer?" And I always answer the same way, which is, "It's awe inspiring. It's just incredible."

You all are here, you're survivors, you're adapting, you're finding ways to make it work, and inevitably you will talk about how there are these little gifts along the way, or these little gems, or these silver linings, or these things that you find certainly with caregiving, that sense of reward that the incredible gift you're giving to your loved one, the sense of purpose, the sense you're stronger than you ever thought you were. You never thought you could do something like this. Feeling closer to one another, more compassionate for others. Meeting incredible people you wouldn't have met otherwise. These are these things that happen along the way, that are also part of the journey.

And we actually can bring those up into the foreground if you will, and especially when there's so much negative, really kind of highlight that for ourselves. Take time to stop and appreciate, and remember.

Some people keep a gratitude journal, so they try to remember something every day, or even just taking a moment to appreciate something can actually help to counter balance all that you're dealing with.

So in summary, it's a marathon, not a sprint. Self-care is essential, and I hope, if nothing else, when you leave here today that you will feel at least just a little bit more that your self-care is critical, and it is important to prioritize in order for you to keep doing what you're doing. That you don't have to go it alone, there lots and lots of resources, and people out there. But it's important that you get a chance to acknowledge your part in this, and your experiences, your losses, as well as perhaps to do that with your family in creating new normals and celebrating gains, and cherishing those small gifts along the way.

00:39:25  [Bishop] So thank you so much.

00:39:43  [Moderator] I think we're going to do questions.

00:39:44  [Bishop] You're going to do questions, okay.

00:39:45  [Moderator] Is there something else-

00:39:45  [Bishop] No, not at all. Not at all. I was just going to say,-

00:39:48  [Moderator] Sure.

00:39:48  [Bishop]... in the question and answer that, because GVHD is so different for different families, and different family makeup is so different, I wanted to focus on the self-care issue because it's a cross cutting universal issue for all of you.

But in this part, it's a chance for you guys to ask more specific questions if there are particular challenges unique to your situation that you're dealing with. But also, if you have pearls of wisdom that you've learned along the way, or ways that you've coped, or ways that you fill your cup, or pump up your tires, that we'd love to hear that as well.

00:40:23  [Moderator] Absolutely, thank you so much Dr. Bishop. Ooh, you okay?

00:40:28  [Bishop] I'm attached, I'm tethered.

00:40:30  [Moderator] That was fantastic, wow. So now it's time for questions, and we are going to be recording this, so it's really important that if you ask a question, you use a microphone, for our friends that weren't able to be here today, they'll be able to listen to the audio recording on the website. And so, we're going to ask our two wonderful speakers and panelists here any questions. Anybody? It was so thorough.

00:41:01  [Audience] Yeah, hi there I have a question about that list of reasons that caregivers say, "I can't take time for myself, I don't want to be a burden, or I don't want to leave the person alone," I'm just curious, which of those things do you hear most frequently? Reasons that caregivers don't take time for themselves.

00:41:27  [Choi] So, in the clinical practice, the one I hear so much is... I'm a pediatric oncologist, so [inaudible], "I have my other kid, I have to run this errand, and I have to go to so many appointments, and I need to..." I'm even trying to provide these services for caregivers, it's "Oh, I can't do that because it's scheduled in the middle of the day, and I have to get Johnny to school, or bring Maddy to you for clinic appointment" So it's just [inaudible 00:42:00] intensive activities, surrounding massive amounts of clinic appoints, and then also trying to [inaudible 00:42:10]. So those are the types of [inaudible 00:42:17].

00:42:17  [Audience] Thanks.

00:42:19  [Bishop] I absolutely agree, that feeling like there isn't time, and then I think feeling guilty. Feeling that their needs are not as important, that the loved one's needs are by far more important and trump their needs. And so in the short term, we do put aside our needs, and it makes sense to prioritize, and push through, and so forth, but again, I think when we're talking about GVHD, that's not sustainable. And so sometimes when I'm working with folks, we talk about how to pass on some of those other tasks, life tasks, so when a person is so busy, and say, "Well, as much as you want to pick up your child at soccer, maybe if you can pass that on to somebody else, and carpool, it would give you a little time to go do something that you need to do."

And that's hard, because they're competing needs, right? So we have competing needs with our loved one who’s dealing with GVHD and us, and our family's needs, and our need to be with our family. But again, I think trying to help folks understand that it is a way that you are showing care for your family, it is a way of caring for your family, because the stronger you are they better off they are. But it's interesting, it's hard, it's a practice, and I think sometimes there's some gender differences too. I think often times women are socialized to be more in the caregiving role, and they may be less likely to feel like it's okay to get somebody else. We get a lot of messages, we need to be Superwomen you know, and so, yeah.

00:44:21  [Moderator] Does anyone have any of their best tricks and tips to share on how they fill their cup, or what's worked?

00:44:35  [Audience] Just we're sitting in the... We're in the ballroom and this women we meet, and she's from Indiana, but anyways, she had to move back home because she wasn't getting care. So there was no caregivers by her, so she moved back home.

Well, she got GVHD so bad, that she can't even eat anymore. She's got her boost, but she seems to have trouble finding help for her financially. She's running an apartment now, she can't declare bankruptcy, and you just feel for these people, and what can she do? When it's not... We get wonderful stuff in Michigan, wonderful, and this poor gal, 58 years old, and just [inaudible 00:45:23]. What can... What do you tell people? [inaudible 00:45:31].

00:45:32  [Choi] Now this absolutely it's heartbreaking, especially the financial, the economic strengths, and when a patient doesn't have a dedicated caregiver, we try and transplant. As you know in Michigan, a criteria in order... because we know all the significant complications that can develop, that a dedicated caregiver must be present, and it's heartbreaking when you do develop GVHD, and they're so much dependent on another person. And when that's not there, it's extremely... those cases are extremely challenging.

00:46:16  [Bishop] Yeah, absolutely, I agree. It's really heartbreaking. It's, I think, pretty encouraging that organizations, like the three organizations we talked about today, do work really hard to try to identify all those needs. And I know, while all of them, but certainly Be The Match, also focuses a lot on the financial aspect, and a lot of folks end up sometimes declaring bankruptcy, or really struggling with financial issues even with insurance, because of out-of-pocket costs, and again the longevity or the inability to go back to work.

And so, I think all three of the organizations have resource guides that list all kinds of resources, including financial resources, but it's not to say that it's not an enormous challenge. And I think it's very difficult to build a support community, when you're describing this person, when they themselves are not well, and they're not in perhaps their home town. And so, to try to build it from scratch, is tough. But sometimes going to the spiritual community network, or other organizations, local organizations that provide help. The United Way often has a list of different organizations.

00:47:50  [Audience] [inaudible 00:47:50] to her when I see her. [inaudible]

00:47:56  [Bishop] Yes, yes.

00:47:59  [Audience] [inaudible 00:47:59].

00:47:59  Bishop] Yes. And again, sign of resilience, right? That continuing on, the determination to keep going, to find the resources, to find the people, and she met you, who is incredibly compassionate. So that's part of that story too.

00:48:14  [Moderator] I might add too, social workers, they know of so many resources. Our staff social worker, she finds just these unbelievable grants for people, and it's part of their job. So I think even going back to your center, or a Gilda's Club, different groups that know, LLS, it's phenomenal, where you can find those resources, and even a friend to be doing the research for you, looking for these resources for you, it's amazing what there is available if you just can look. And Triage Cancer, if you guys don't know what Triage Cancer is, as far as financials and insurance, they are very, very well regarded, and I encourage you to go to their website.

00:49:04  [Audience] So these comments are probably more appropriate when somebody is first diagnosed, and has their bone marrow transplant, but to kind of build on your comment, it really does take a village. So we live in Michigan, and my wife was treated at U of M, and we're like 120 miles away, and it was in February, so we get some snow in Michigan. And people were shoveling the snow, and in the summer time when she had her bone marrow transplant, we summered in Ann Arbor, and people were cutting the grass. So that was just one less thing off my plate.

And also, we have five adult children, a couple were out of state, so you're kind of a caregiver for your spouse, but you're trying to help your kids understand, and cope with what's going on. So it's kind of a... We're part of that sandwich generation I guess, or whatever.

And then Caring Bridge... I was trying to work and be a caregiver, and when we had our stay in Ann Arbor, the caregivers were myself on the weekends, but then my wife's college roommates, her siblings, friends from our hometown, so we shared that responsibility. And then I found Caring Bridge to be fantastic because I'd be home and the phone would ring, and I said, "You know, I'm not going to answer it. I'm just tired of talking to people." And I think with Caring Bridge, everybody gets the same information, you don't forget something. And my wife is very private, so she only wanted certain things shared, and that way we could kind of control the story. And not control it in a bad way, but just it was things she wanted people to know.

But I found that hard, is that, that phone just kept on ringing, and people were well-meaning, but you can burn down from telling the same thing over and over again.

00:50:52  [Bishop] Just to add to that, and those are just fabulous points, really appreciate you sharing that. You're getting all those questions, and you're trying to answer and it gets overwhelming. Sometimes also, you can be a kind of gatekeeper, right? So you're protecting your loved one if they're tired, or they're not up to socializing, and so you're in that role as well, and that can be stressful.

00:51:24  [Audience] Well, and that's one thing, even in the hospital, the nurse said, "As the caregiver, you've got to protect the patient. If they don't feel like having visitors, be strong and say no.

00:51:36  [Bishop] Right.

00:51:42  [Moderator] Any other tips, pearls of wisdom?

00:51:50  [Audience] I guess I'd like to just hear people talk about creative ways they've figured out how to turn down help that isn't wanted. So many times people just come in with way off based stuff, even close family members who have been with you for years through the process. And you're like a decade in, and they're still not... maybe don't even know what GVHD is, or whatever. So just ways to tell people to back off.

00:52:38  [Moderator] Hit it Michelle.

00:52:40  [Bishop] I think it's a fabulous question,

00:52:43  [Audience] I was just-

00:52:44  [Bishop]... and I want to hear what you do first.

00:52:47  [Moderator] It sounds like you have experience in this.

00:52:49  [Bishop] That's right.

00:52:51  [Moderator] Do you want to talk about what you do?

00:52:58  [Audience] I don't I'm not good at... I don't know, I guess I just recently had an experience where I was having challenges with my folks, and my brother just around dealing with buying a new house so I can have everything I need on one floor, and selling the old house, and they're coming in with all kinds of crazy stuff that I can't fend off. And I'm... As much as they're helping, I'm angry with them every day. So I don't really... It's just about taking time and calming down is the only... backing away from people for a long enough time, so that I can then address them in a calm manner, is the only thing that I can do sometimes.

00:54:00  [Bishop] It sounds like it's a lot of work.

00:54:05  [Audience] Yeah.

00:54:05  [Bishop] Yeah, yeah. And it's tough. And I'm so glad you brought that up, because I think it's the flip side of help. So sometimes help isn't helpful, sometimes it's well-meaning but it's too much, or sometimes people talk about, they're given 20 casseroles and they can't possibly eat it, or they don't really like the food. And what you're talking about is-

00:54:31  [Audience]  [inaudible 00:54:31] four casseroles.

00:54:34  [Bishop] Right, right. And people can be well-meaning, but sometimes it just is too much, and it sounds like you're really trying to set some limits.

And I think first and foremost, if possible, trying to communicate. I know it might sound overly simplistic, but really trying to make “I” statements, acknowledging the intention, it's positive, you appreciate it, but they may not recognize that actually, this is more stressful, not less stressful for you. It's that a way that they could help you, or better help you, is to actually give you space and let you do this on your terms, on your own.

If there's a way a different way that you think they could be helpful, maybe somewhere else doing something else, you might suggest that. You might give them something, a task, and say, "You know what would really help me, is if you could research this. I'm trying to make this decision about a house," and so they still feel useful, so they're not just turned away.

Sometimes it's hard because there are interpersonal challenges with personalities, and with family that just are there, that can complicate the situation. And sometimes when we set limits, family members get their feelings hurt, or they get mad, and we struggle to be sensitive to that while also taking care of our needs.

And so of course, one possibility would be something like family counseling, or you guys in your nuclear family, your couple, whatever your family makeup is, you decide what you need to do and set those limits, and you try to explain it respectfully, and assertively, and then you let go of what their reactions are, because you can't be responsible for that.

You try to do the best you can, you try to explain to them, and again, maybe give them options. But that's a kind of self-care that we didn't talk about, but that's really important, but also very hard. So I appreciate-

00:57:01  [Audience] [inaudible 00:57:01] about, your help isn't helpful. That's a good one the... it's a good... a nice way of saying... We went through that, where we have a family member that didn't... wasn't really around, but then it was all poor me, and this is her granddaughter that is fighting for her life, and you can't even come see her. But then we're at fault because we didn't include her on stuff.

And with everybody that's fighting a disease, my priority is my daughter, my priority is not this phone, and as we said to numerous people, "If we don't get back with you, don't be offended." And we had a lot of people that were fine with that, and then I get the one that... whatever, but...And it wasn't me.

00:58:18  [Audience] Yeah. It wasn't this grandma. But it is, it's hard, because I'm not one to ask for help, I'm not one to... We're just very independent, and then all of a sudden... Can you-

00:58:38  [Audience] Well, you can't be absent all the time, and then all of a sudden your granddaughter's not well, and then a week or two weeks might go by and she might go, "Well, how's... Do you like not having hair?" I mean, you just don't ask people this stuff, you just be empathetic.

00:58:56  [Audience] I just... You learn how to use your words, and then I've learned that my problem was laying in that bed. That's the only thing that I needed to focus on, and if you had a problem because you felt like you were left out, that's not my problem. You weren't there to help, that's not my problem. She's my priority. But I really liked how you said, Your help isn't very helpful. And hey, people get... sorry, but people get hurt, nothing you can do about it. That's just how everybody can be.

00:59:52  [Moderator] Thank you for that. What a session, I don't want to end this. I see a lot of people nodding, and this is terrific. Gentleman in the back?

01:00:03  [Audience] Yeah. My wife and I have experienced this over the years, I was the patient... She was the caregiver, not just with friends and family, but with each other. And I think that one thing that's helped, which is that word that we're talking about, is trying to avoid phrasing what we need as a negative, "No, I don't want that, or that doesn't help, or I don't like it," but rather phrasing what we need, and coming right out and asking for it, but as a positive, as a gift.

For example, "We'd really appreciate if you could give us the greatest gift right now, just give us some space. Or give us some time, and that would be a way of giving us something." So whenever possible, I think people respond to the positives.

01:00:58  [Bishop] I think that's well said, and I think that's a great kind of refrain in terms of the asking for help, and seeing that you actually are making it easier on other people, right? If you can say, "Here's what would help me." And sometimes, here's what would help me, is not getting certain types of help, and making that clear rather than don't, or more of a negative stance. So I think that's a great point.

01:01:30  [Moderator] I think we need to wrap things up. I hate to do it. But I want to thank our speakers, and everyone will be heading back to the ballroom now to regroup for the networking sessions. And thank you all very much.

01:01:47   [Bishop] Thank you.

 

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