Secure Your Oxygen Mask First: How to Manage the Challenges of Caregiving

Presenter: Michelle Bishop PhD, Cancer Therapist

This is a video of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium

Presentation is 54 minutes

Summary:

Caring for a recovering transplant can be rewarding, but challenging as well. Learn how self-care, patience and setting realistic expectations can ease the caregiver burden.

Secure Your Oxygen Mask First: How to Manage the Challenges of Caregiving

Highlights

• Family caregivers are critically important for the recovery of a transplant recipient
• Long-term, caregivers report qw much or more stress than patients
• Self-care is the backbone for good caregiving

Key Points:

01:54  Caregivers for transplant recipients are survivors, too

04:42  The family caregiver is critically important before, during and after transplant

05:57  What is the family caregiver's role during transplant?

08:11  New and shifting roles caregivers for transplant recipients must assume

09:15  Caregiving affects family relationships

10:17  Caregivers may experience and try to hide feelings of helplessness

13:09  Challenges during the acute phase of treatment 

13:43  Challenges during early recovery after transplant

15:20  Adjustments caregivers need to make during the first year after transplant

21:51  Caregivers experience as much, or more, stress than patients and are less likely to seek help

33:04  The caregiver's physical health is critical because it is the backbone of stamina

35:44  Dealing with difficult emotions

39:42  Gains and personal growth caregivers may experience

Transcripts of Presentation

Introduction: Thank you all so much for being here this morning, first session of the morning. It's a gorgeous day. I Appreciate seeing you. I'm really honored to be able to spend this hour with you to highlight some of the issues that you're dealing with, some of the challenges, and really acknowledge your role and the importance of your role in this whole process. Can you just show me, with a show of hands, how many folks are family caregivers? Any patients? Sometimes we're a patient and a caregiver. Today we're going to talk about some of the challenges that bone marrow transplant, or BMT for short, that come with that. Particularly, focus on the experience of family caregivers.

00:52  Overview of Talk: My goal is several-fold, as you see. It's to really acknowledge and validate the family caregiver experience and highlight the vital need for you all to take care of yourselves in this process. I certainly understand how challenging it can be to do that and try to figure out, "How can I possibly find time to do that?"

We'll talk about some different ideas and tools that hopefully will be helpful to you. I also want you to know that you're not alone. The fact that you're in this room with all these fellow family caregivers, that in itself is so powerful. Obviously, one of the points of these fabulous conferences is for you all to find that you aren't alone, to be able to talk with others about their experience, and to get support and information. There are numerous resources, in fact, available to families and caregivers. Some of them are here, and we'll talk about them in more detail a little bit later.

01:54  Caregivers for transplant recipients are survivors, too: The BMT journey typically starts with a cancer diagnosis, which, of course, is a major life stressor. It is life-shattering, and it affects every aspect of quality of life, as you know; not just the physical, but the mental, emotional, cognitive, social, sexual, financial. It just has this ripple effect through every part of your lives. It affects, of course, both survivors and family members. The National Coalition of Cancer Survivorship and National Cancer Institute actually acknowledge this in their definition of cancer survivors: that not just those who are going through treatment, through cancer diagnosis and treatment, but because friends and family members and caregivers are also affected by cancer, they're actually included in the definition. Officially, you are considered survivors.

There are lots of different terms that we might use. There's co-survivors. I've seen some studies that talk about second order patients. Even though this is here and it's so important, in the day-to-day world of the medical system, typically the family caregiver is not acknowledged as a co-survivor but rather as a resource for the survivor themselves. Our medical system isn't set up well to acknowledge the impact on the whole family, but certainly we can continue to try to move this concept forward and make sure that the whole medical team is thinking about that, and that the resources available for family members is there from the beginning all the way through long-term survivorship.

03:46  Special challenges associated with blood or marrow transplant: Certainly, having a diagnosis of cancer, and going through cancer treatment, conventional cancer treatment, is a challenge. As you know, there are particular challenges that come with blood or marrow transplant. It's particularly intense; and often requires extended absence from home, family, or work, especially while the patient and family are at the transplant center, and then often times for several weeks or even months immediately afterwards while they're still being seen in the clinic. There's significant short and long-term effects, symptoms, effects on the patient and long-term late effects that not only affect the health of the patient but also affect their ability to engage in day to day activities and so forth. It can affect the family that way too. As you know, it typically has a longer recovery period than a conventional cancer treatment.

04:42  Importance of the family caregiver before, during and after transplant: With all of that, I think you immediately can begin to see the importance of the caregiver, the family caregiver and the family support in this role, in this context of BMT. Of course, the family caregiver provides care, support before, during, and after BMT. Actually, studies have shown that they're critical to the health, adjustment, and quality of life. There was even one study many years ago that showed that survival rates differed for patients who had caregivers and those who didn't. You are that important, critically important, to this process and to your family member having success in this treatment. You know, one way it's been described to me is often that the patient, particularly when they're ill, the patient's focus is to survive, is to get through treatment, is to get through day-to-day, watching counts, dealing with symptoms, just focused on their health and getting through, while the family caregiver takes care of everything else- the everything else is a lot.

05:57  What is the family caregiver's role during transplant: We talked about the caregiver role, but it's not a single role by any means. Family caregivers, of course, provide hands-on care and, to a certain extent, do that in the transplant center, but where you really see that is when the transfer of care goes from the transplant center to home, where now it's all on the family caregiver. There are other roles of patient advocate, so the person who gathers information, the person who makes all the medical appointments, it might be driving to the medical appointments, might be keeping a notebook of questions and what the transplant team is talking about, monitoring of symptoms, which can be really stressful because you don't know always, "Is this an important symptom? Do I need to report this? Is this okay? Is this normal?" Being a liaison with the healthcare team, so being able to communicate all that's going on and ask questions and sometimes translate or help the patient communicate with the medical team and being that liaison.

Another aspect is that often the family caregiver is the point person for informing and communicating with all the family and friends, the whole support community out there who, often, is sending all kinds of information or questions and calling and emailing and texting, "How are things going?" To be in that hub, actually, it can be wonderful to be getting all that support, but it can also be very stressful to be managing all of that information. We're going to talk about some tools that can be helpful with that.

Then, of course, this doesn't happen in a vacuum. Life goes on, so there's managing home. There's managing finances. There's managing children, perhaps other family members that are ill. There's all of that going on and trying to keep things running smoothly, and provider of emotional or psychosocial care for the patient, being usually the person who is the cheerleader, is the person who wants to kind of bolster their spirits.

08:11  New and shifting roles caregivers for transplant recipients must assume: Lots and lots of roles, and some are maybe ones that one is used to, that are part of the family, that are kind of what the person's always done; but often, they're new roles or shifting roles.

Obviously, new roles like nurse, and that has on-the-job training because most of us are not professional nurses. We might get some information and support from the transplant team, but so often we are flying by the seat of our pants and trying to figure it out. It's scary to have that kind of responsibility of literally the physical care and the medical care of our loved one. There can be added roles, so things that one has never been in a position to do before. We're saying communicating with that support team or taking on roles that the patient isn't able to do for a period of time, whether it's cooking, cleaning, doing the bills, whatever it might be.

09:15  Caregiving affects family relationships: There's a lot of shifting and adjusting. One of the other changes and shifts is in the interpersonal realm. About two-thirds of family caregivers are spouses or committed partners. When we think of that, we think of two people who are going through life as equal partners, that are living life, sharing life, and so forth. Now, often times, they feel like they're shifting to kind of unequal roles. It's more kind of patient-caregiver or nurse-patient role or sometimes even kind of parent-child role or the one that's dependent and the other that is providing the care. Interpersonally, psychologically, socially, that's tough when you're used to being equal partners in life. Now you have to be more dependent or more responsible for a time. Of course, it's in the context of ongoing roles, as we mentioned.

10:17  Caregivers may experience and try to hide feelings of helplessness: There are special challenges for you all, for family caregivers. You all experience the transplant process and recovery process directly in all the ways that we just talked about; but also indirectly in that you are watching your loved one, often the person that you love most in the world, suffer and may often feel very helpless to do anything about it. That adds a whole another layer to this experience. It's obviously very, very difficult, very challenging. You may feel that you have to contain or hide your feelings, that it's not okay to share your own fears or your own uncertainties or your own worries, partly because you want to support your loved one and they're already worried. You might not want to burden them, but you also might not feel like there's a place for that, might feel guilty. Again, we'll talk about that a little bit.

11:12  Family caregivers can feel isolated: Family caregivers can feel isolated often. The focus of support typically is on the patient. When people call, they say, "How's the patient? What's the latest?" and so forth. Unfortunately, less frequently, they will ask, "How are you? How are you doing in all of this? This has got to be really difficult." That is something that we can help educate our support system, that we need some support too.

11:41  Changes in interpersonal roles between caregiver and patient: Those changes in interpersonal roles can make it harder, as I mentioned. The caregiving role is often not distinguished from the family role. Now, this kind of cuts both ways. On one hand, sometimes folks are uncomfortable with the term caregiving because it might connotate something different. It connotates maybe the hands-on caregiving or what we imagine when we think of professional caregiving. This is seen as part of loving, part of caring, part of being with our families, doing, of course, what we would do, what they would do for us

I think sometimes it's helpful to be able to distinguish, though, and acknowledge all the different aspects so that one realizes, "Wow. I am taking on a lot, and some of these things are different than what I'm used to doing in the context of our family." It's hard for us to find the right word and the right language to describe completely the experience. Again, I do really think about you all as the forgotten survivors in this picture in that you are being directly affected as well.

12:54  Transplant has several phases with different challenges: We talk about transplant: it's not a single process, as you know. It really has different phases of survivorship. Each phase brings on different challenges for the patient, but certainly for the family caregiver as well.

13:09  Challenges during the acute phase of treatment: As you know, in the acute phase, when you're going through treatment in the first 100 days, it is typically at a transplant center. There's monitoring of symptoms. There's managing the home from afar. There's really these acute kind of focus. It's almost like being in a kind of crisis mode, a lot of problem solving, and often times a lot of help from others. The outside world, if you will, kind of gets it. They understand, "Oh, you are ill. You're getting treatment. You're in the hospital. What can we do to help you?"

13:43  Challenges during early recovery after transplant: In the early recovery phase, the next phase where that's that transition to home, I think the support community doesn't understand that it's not over yet. They might say, "Hey, great. You got through transplant. You're home. Life goes on. You're all good now." Of course, as you know if you've been through this, that's the beginning of the next chapter. It sometimes can be a pretty long chapter. Typically, especially for folks who are having an allogeneic transplant, we're talking a year, maybe two years before really things start to feel like they've gotten back into a better rhythm. As you know, there are long-term survivorship issues that continue often for a lifetime. There might be monitoring that has to happen that's different than someone who hasn't been through BMT, late effects, long-term effects, or changes that are a result of the treatment where the family has to adapt and adjust.

14:48  Caregiving after transplant is not a sprint, it's a marathon, without out a clear end in sight: I know this is a cliché, and I'm sure you've heard it," It's a marathon, not a sprint." One of the aspects of this, though, that's even more challenging, if you're going to run a marathon, you at least know what distance. You choose the distance. You choose whether you do the half marathon, the full marathon. In this case, we don't actually know where that finish line is. Is it going to be a half? Is it a full? Is it an ultra- marathon? We can still use that image to help us as we move forward to understand that this is a long-term prospect.

15:20  Adjustments caregivers need to make during the first year after transplant: We really need to build in support, build in help, build in self-care to go the distance. In terms of family caregiver adjustment, I won't spend much time on what we do know from studies, but it gives you kind of a brief overview. Not surprisingly, in the first year after BMT, there is physical and emotional exhaustion, all those changes that we talked about, and then struggling in watching, witnessing the changes in the survivor and really, obviously, being often very anxious and scared and feeling helpless to make things better.

Of course, usually the caregiver's needs kind of go to the bottom of the pile. There's lots of unmet needs. Again, that can be okay early on if it were a sprint, if it were the acute process of, "I'm going to push aside my stuff. I'm going to focus on my loved one right now," but where it becomes a problem is where it's more chronic, and it keeps going, and we forget or we have trouble bringing back some of those ways of coping and ways of meeting our own needs.

Addressing survivor's emotional needs, it turns out to be one of the more challenging things. I think it's probably because if we were aren't feeling so strong and we are feeling scared and uncertain, it is that much harder to remain really positive and cheerful for our loved one. We don't always have to. I'll get to that. That social isolation that we talked about, of course, often the focus is on the things at hand; and so there's a withdrawal from former activities and relationships and, of course, financial worries.

17:10  Impact of transplant on caregiver's long-term quality of life: Long-term quality of life. This is the study that Christine referred to that I was involved in a number of years ago. At the time, it was the first one to date looking at very long-term survivorship. We looked at the quality of life of bone marrow transplant survivors. There were 664 from 40 transplant centers in North America, so all over, a huge sample for these kinds of studies. They were anywhere from two to 23 years post-transplant. We had a lot of data on the early phase and recovery but not much on what happens with way long-term. These folks were an average of seven years after transplant. Of course, the patients generally were doing pretty well, but they were experiencing fatigue and some cognitive issues and sleep and sexual problems that you probably would expect.

18:04  Long-term, caregivers report more problems than the transplant survivor: These findings were the ones that really struck us. We honestly didn't expect it this many years after because we were still thinking in terms of the traditional model of caregiving. The caregiving, hands-on, should be less now. It is less, but the impact is still felt. What we found was that spouse caregivers, there were over 200 of them, and we had a group of controls that were matched that did not have cancer that were matched on different variables, we found that the spouse caregivers also reported significant fatigue, more so than the match controls. They reported cognitive, sleep, and sexual problems as well, not to the same extent as the patient, but certainly significant. They reported less social support and more loneliness than the patients. In that way, they were worse off all these years later.

19:04  Caregivers report high rates of depression long-term: We found that the odds of depression for this group was about three and a half times that of the control group and that they were less likely to be getting help. I found another study recently that indicated that 68% of family caregivers are still providing some care to recipients six years after bone marrow transplant. It's telling us that this normative for going through this process, that it continues for many years. We know from other studies of chronic caregiving that it can have a negative impact on the immune system and certainly on the health of family caregivers. This is why we feel so strongly that we want to have these presentations that talk about, "How do we help you take care of yourselves?" We don't want to scare you, but we want you to understand that this can have consequences and that you can be doing things now to help yourself.

20:01  Couples may experience marital stress long-term after transplant: In terms of couple distress, in our study, about 20% of couples reported marital distress. One thing that has been brought up in the literature that's I think really important is something called protective buffering. Couples will protect each other by not always sharing their thoughts and feelings because they don't want to burden the other. Unfortunately, sometimes that can create distance or separation between the two. It can be scary to talk about it. You can worry about burdening the other, but often that process actually helps bring people together. The thing is the patient's not going it alone, and you're not going it alone. You guys are doing it together. Finding ways to come together, finding ways to talk about it and acknowledge, "Okay, this is impacting all of us. How can we work together?"

Two other small points in terms of those role changes. One of the things that's interesting in that long-term picture is sometimes it is a challenge, an adjustment for the roles to go back. When it's been kind of patient-caregiver for a while and now the patient is feeling better, can they take on some of those old roles that they had given up? Should the family caregiver be kind of pushing them or nudging them a little bit? Sometimes it's hard to give them up. There's this whole other adjustment that comes down the road. Of course, that feeling sometimes of the loss of the confidant. If this is your primary go-to person in your life and you feel they're not well or they don't have the energy or they're not the person to go and share your deepest worries and fears because they're the ones who are going through it, that can be particularly challenging as well.

21:51  Caregivers experience as much, or more, stress than patients and are less likely to seek help: Bottom line: family caregivers, and this is many, many studies support this, that you all experience as much distress; but often more distress than the patients themselves and are less likely to be getting help.

22:07  Barriers to self-care for caregivers: What are some of the barriers to self-care? We've mentioned some of them, feeling selfish, feeling like you don't have time, feeling like you're not the one that's sick, the focus should not be on you, that you would never forgive yourself if something happened. If you were to leave and take a break and go out with a friend and left your loved one at home, what if something happened? You would never be able to live with that. Or that you shouldn't need to take a break, or you can't figure out how to possibly get that in your schedule because the plate is so full. Might not have access to help and resources and may not be aware of them. A lot of the resources that we'll mention include telephone-based support and materials that you can access from home. It's not that you necessarily have to go somewhere.

Self-care is vital for caregivers: Hopefully you've gotten the bottom line message here: that self-care is vital. Your self-care is absolutely vital. Your health and well-being and that of your loved one literally depend on it. Here we have the cliché to put your oxygen mask on first. I think we hear it so much we don't even think about it. If you've flown and you hear it, often times we just don't even pay attention to that message; but if we stop for just a second and think about it, my understanding and it might be wrong, but if cabin pressure changes in an airplane, literally, it's a matter of seconds, I don't know, 10 seconds or something, before one would really start to feel the effects of a lack of oxygen. One can start passing out pretty quickly. If we're spending all of our focus, energy, on trying to get this oxygen mask on our loved one, we might not be able to do it in 10 seconds. Then what? We pass out. They pass out. We're both in trouble.

It fits. It really fits. You know, it's important to do it for them, if not for yourself. You are the ones holding so much of this, keeping everything running. If you are unable to get that oxygen, unable to take care of yourselves, you're in trouble, but they are too.

Ways to promote strength, stamina and resilience: What are some ways to promote strength, stamina, and resilience? Again, we're thinking long-term here. We're thinking marathon. These are just kind of five of the things we're going to highlight today. There are lots of different things, but we'll focus on these today.

The first one's getting information. A lot of anxiety is about not knowing is not knowing what to expect, not understanding what's happening and so forth. Right off the bat, we can feel more in control and more empowered if we have information, if we have at least some idea of what to expect and what we can do if we do experience certain things. You're here now. You all are information seekers. That's what this conference is about. It's such an important part of this process, and there are great resources.

25:12  Getting information about what to expect as a caregiver: One of the things I'm hoping that you're finding today is that you all are resources for each other. Yes, there are experts that have lots of information and lots of pamphlets to give you; but it is invaluable to talk to other people who've been through it because they have a very different perspective, and they get the day-to-day. They might have all kinds of suggestions and tips or at least validation that only they can give. There are lots of resources. I'm not going to go through all of these. You have a handout that has them listed, so you don't need to write these down. We have some of the materials here to pass out as well and, of course, in the tables outside. These three organizations I find are kind of the key organizations that I go to certainly working with families. Of course, BMT InfoNet, Be the Match, and the National BMT Link. They all provide amazing resources. They kind of really complement each other. nbmtLink has some caregiver-focused webcasts and a lunch and learn and a caregiver book.

BMT InfoNet obviously has Caring Connections and these symposiums. Really wonderful resources. I'm always amazed and saddened that families don't necessarily hear about these resources early enough.

26:41  Caregivers can't do the job alone - create a support system for the long-haul: Support and help, I can't emphasize this enough. It is too much. It is too much for one person or one family to go it alone. It really does take a village. Thinking about that support system not just during that acute medical phase but for the long haul, that's a really different kind of way of thinking, particularly sometimes for our support system. We can be pretty creative. There's lots of different kinds of support that we're talking about. It certainly can be emotional, social support, but people who can cook meals, who can drive, who can pick up your kids from soccer, who can go to the pharmacy, who can watch your house while you are away for a period of time, yard work. There are many different sources.

Sometimes we think of only immediate circle, but if we broaden it out to neighbors, to coworkers and so forth, what I'll do sometimes with the folks that I work with is have them make a list of all the things that they do and all the things that they could use some help with and then all the people in their life, all the people resources, and everyone they can think of. What are the strengths that those people have? Sometimes people are really good at computers or they're really good at phone calls or they're a great cook, so to make an extra something and bring the leftovers is really easy, or they go grocery shopping three times a week anyway, so could they take your list? Then, matching the needs to the people. It's important to let them know about the marathon because they're not going to know. They're going to forget. It's not that they don't care. It's that their lives go on, and it's not in their face even though it's in your face every day.

To let them know that it's still happening, and that's where building it so it becomes just a regular thing, every month they do that, they don't have to think about it, and you don't have to ask. It can be really hard to ask and hard to receive help. It does help them because they want to do something, but they don't have any idea of what you need. It can be a gift to them. I think often times it's helpful if somebody... They'll often say, "Let me know how I can help," and you feel like, "I don't even know where to start." If they do say that, say, "Well, actually, there's two things I need or three things I need." Give them a choice and be concrete and say, "Is that something you could do? That would be great," or, "Do you think for the next six months you could do this for me? Could you just pick up my kids so I don't have to think about it?"

29:26  Resources for communicating with your support team: There's some great resources for communicating with your support system on those kinds of things. You guys probably have heard of Caring Bridge. I'm sure it's been talked about here. Of course, there's Facebook.

Caring Bridge is a wonderful website where it's free and you can post pictures and typically written updates for what's going on. People use it in different ways. Sometimes it can be how's the patient, what's going on when they're in the transplant center, how's today going and so forth. It can even be, it ends up being almost like a journal or a document of all that's happened, but it can also be a way to post, "Here are the things we're dealing with. Here's what we're kind of struggling with, what we might need help with." Then, your support system can go to that site and see and say, "I can do that. I can help with that," rather than you being that hub where you are fielding the calls, and you're trying to call people back, and you're trying to organize care. I mean, you have enough on your plate to have to do that.

Other resources like Lots of Helping Hands, Meal Train, Care Zone are exactly that, ways to organize and manage the help and the needs, where you're not actually having to do it. The website, again, is free. You identify what you need, and you put it on a calendar. You might need your patient or you might need a ride on a certain day, or meds picked up on a certain day. Then, your support community goes to the website and looks for what you need and signs up for, "Oh, I can do that on Thursday. I can drive," and so forth. You aren't managing and dealing with those phone calls because that's pretty stressful.

31:11  Steps to take for self-care: Self-care. I know this is incredibly challenging. It doesn't have to be huge things. It is amazing how even just doing small things like five, 10 minutes can make a difference.

One of the first things is to check in with yourself. With lots of folks that I've worked with and in our studies, what we found was that caregivers were so focused and devoted to their patients and families that they weren't even aware how tired they were, how exhausted they were, how they were starting to develop their own symptoms. They were just very focused and oriented towards the other. As wonderful as that is, again, the problem is if you don't put your oxygen mask on first, something's going to happen. Maybe finding a way, it's different for everybody, but a way to check in with yourself ideally on a daily basis, maybe when you wake up in the morning or at the end of the evening.

I think of sometimes a meditation or just a quiet where you just sit, just take a few minutes and literally check head to toe, "Okay. Where am I? How am I feeling? What am I feeling?" It's only when we stop for a moment that we realize, "Wow. I am really tired," or, "Wow. I'm dealing with this pain I wasn't paying attention to," or, "I'm feeling anxious and overwhelmed." The good news about that is once you identify it, then it's like, "Okay. I can do something about that. That's a signal. I need to address that. What can I do?" Thinking about once you identify it to begin to incorporate certainly at least checking in with yourself in a daily fashion, but are there little things you can do and schedule in?

33:04  The caregiver's physical health is critical because it is the backbone of stamina: Physical health, of course, is critical. It's really the backbone of stamina. I know you've heard these things, and I know it's easy to say, "Yeah. Yeah. I'm supposed to eat well. I'm supposed to sleep and drink a lot." It can feel like a laundry list of should we, which can get overwhelming. I guess, again, thinking about small things you can do. In our caregiver toolkit, we supplied a water bottle. It's just a reminder to try to hydrate, to take care of yourself. You do what you can. I know I'm running out of time, so I'm going to go a little faster. The idea is you can't pour from an empty cup. If there's no resources there, then it's very difficult to give. Coping with stress and tension, thinking about burning it off, so moving and burning off any kind of stress as well as turning off, which is more relaxation, meditation, prayer, and so forth. Again, there's some resources in the handouts.

34:07  Signs of caregiver burn-out: Being aware of those signs of burnout. If you do notice that you're exhausted, you're losing or gaining a lot of weight, using more alcohol or medications, not sleeping well, these are signs. These are signals to pay attention to. Certainly they are signals to focus on self-care, but if they get to the point where you're feeling very hopeless or helpless or anxious or it's interfering with functioning and it's getting more difficult to do things to reach out for help, to contact your primary care doctor, to think about counseling, reaching out to the medical team.

34:48  Think about ways to recharge yourself: In terms of respite, recharging, thinking about how you fill that cup. How do you replenish those resources? I think of our cellphones. We're so good about plugging in our cellphones. Even if we can just plug it in for 10 minutes, even if it's not a full charge, it makes a difference. We can still count on it. Same idea. What can you do even if it's small to keep that battery going? To think about things that help you to remember who you are because it can take over, it can be overwhelming, and it can feel like your life is all about the medical and all about visits and so forth. It's easy to forget both individually who you are, who you are as a couple, who you are as a family. Being able to do things where you take breaks from the medical and things that remind you of who you are, because this does not define you, is so important and I think really helps to recharge those batteries.

35:44  Dealing with difficult emotions: There are, of course, lots and lots of difficult emotions along the way, and it is a roller coaster. There are amazing, positive emotions that I'll to you about in just a minute; but there's obviously all of these very difficult emotions. Often it feels like a kind of pressure to be positive, remain positive. I think that does folks a disservice because the reality is this part of it. There are a losses that you're dealing with, loss of independence, loss of the imagined future, loss of the social activities and all the things that you were doing. It's okay to acknowledge it. These are very real feelings.

36:19  Don't try to hide your emotions: To give yourself space, to not hide, not worry about burdening others, not feel that you must remain positive, and to acknowledge and process those emotions. It can be by talking. It can be by writing. I know there's a workshop here about expressive writing that can be very helpful, particularly for caregivers. We did a study with caregivers and expressive writing. I think it was very powerful because there can be that inhibition to share. To write, it was actually very private. It's about writing and processing those emotions. Talking with others who are going through BMT, as you are here at the conference, and also spending time with folks who are not going through it. Grieving those losses and thinking about grief moves us towards acceptance. Acceptance doesn't mean resignation. It doesn't mean giving up. It means acknowledging, "Okay. This is real. This has been hard. We have had a lot of losses," but also then it allows us to step up again and say, "Okay, what can we do? How can we move forward? How can we make our lives the best possible from this place?"

37:34  Counseling can help, not only in a crisis moment: Getting extra help. I'm a psychologist, so I'm all for counseling. Remember, it doesn't have to be only if you're in crisis or in trouble. It can be a place that you build in as part of your self-care. It's a safe confidential space, a space that you can call your own. It's scheduled time. If every week or every two weeks you've got that time, you'll make it happen. You can really take a breath when you're there. You don't have to worry about burdening anybody. Family counseling can be helpful, too, to help solve problems, address communication difficulties, and so forth. Insurance will cover it often times.

38:19  Free counseling and support services: There are also some free resources that are included in the materials, and here are some of them. These are with clinicians that are trained, that understand about cancer and BMT. If you can't leave, there are ways to access resources from your home.

This is a resource for caregivers. I worked with Be the Match to help develop this. This is the caregiver self-care toolkit. It is free to all caregivers. You get these materials in the mail, but you also work with a coach who is trained in all of these issues and in supporting caregivers. It is an amazing resource, and they're amazing coaches. It's through Be the Match. They will talk to you once a week or whatever works in your schedule and help you with the materials because it's modular, so it focuses on different aspects like getting social support or how do you take care of yourself physically and so forth and also just having the coach as someone to talk to. Keep this in mind. Lots of resources for caregivers. Again, all in the handout. These are some BMT specific, general caregiver, and then national caregiver organizations particular to cancer.

39:42  Gains and personal growth caregivers may experience: I know we're talking about a lot of the challenges, but as you know, if you've been through this, one of the amazing things about the human experience and amazing things about the work that I do is human resiliency and adaptation, and our ability to overcome and our ability to find positives and to find silver linings and to find joy and connectedness. There's a growing literature on this, but we certainly know it just from working with folks. What a gift to be the care provider and support person for your loved one. It is really a sacred role and can help you to feel like it's rewarding, it's purposeful.

Certainly, going through this makes us appreciate life and gives us a whole different perspective on life and living. Often, caregivers say, "I never thought I was that strong. I didn't think I could do this. I'm kind of amazed that I've been able to do as much as I have." Feeling closer to family, more compassion for others, and, of course, increased faith.

40:46  Reflecting on positives of caregiving can bring peace to a difficult moment: You can do things to kind of bring up that, especially when you're feeling like there's a lot of the challenge. You can do mindful things to kind of bring up those positives because they're there. They're just sometimes hard to remember, hard to see. People talk about sometimes a gratitude diary. Every day, reflecting, is there one thing, even a small thing, a person you met, a nurse who was really kind? Someone in the networking group yesterday said he just couldn't believe the goodness of people, all the people in his transplant experience, and how good and how dedicated. In this day and age, that's not a given to feel that kind of profound swelling of gratitude, so things like that. Then things you can do like giving back, being part of the peer connections program, using your experiences to help ease the way for other people, so lots of things that you can do.

41:50  Adjusting to a new life after transplant: Finally, it's really about that adjustment process, putting the pieces back together. It's an ongoing process. It's not that it's ever finished, but sort of the idea here is to put all the shattered pieces into a new pattern just as beautiful, just different. New ways to do the things you used to do. Maybe priorities shift.

I worked with a couple who used to love to travel and hike. The patient couldn't hike anymore, so they decided to start traveling with another couple. The spouse would go hiking with the other couple during the day, and the patient was actually really glad to stay in this beautiful setting and read. They'd all come back together and share and so forth.

Being creative about how we do this differently. It doesn't mean we don't do it at all. Then, cherishing, of course, the gifts that have come along the way.

42:53  Summary of talk: Thinking about filling your cup. How do you plug in? How do you recharge those batteries? It takes a village. You can't do this alone. No one can do it alone. No one should do it alone. There are lots of people in terms of organizations and people that are there to help you, and looking for the silver linings because they're there. That is part of the amazing resiliency of the human spirit. Thank you.

 [Moderator] Thank you very much, Dr. Bishop. We're going to take questions now. If you'll recall, we are recording this session, so please speak into the microphone. We can bring that around to you if you'd like.

Question and Answer Session:

43:51  How to deal with an angry adolescent patient [Dr. Bishop]: What to do with an adolescent or a family member, can be an adult too, that might be irritable, angry, seeming resentful of the care and kind of fighting it. I think of a number of things. I mean, one is, in terms of understanding what might be going on, if she doesn't feel like she has a lot of control, of course it is a way of controlling. Anger can [cause someone to] feel more kind of powerful rather than feeling vulnerable. It may be a way that she's trying to manage that and getting control, certainly.

It's still appropriate to set some limits. Just because we can understand and be compassionate and validate those feelings, it doesn't mean it's okay for us to be hurt in any way or spoken to disrespectfully or abused in any way. I think sometimes acknowledging it and saying, "I sense you're really angry, but this isn't okay. This doesn't feel okay to me when you do this, so let's take a time out. We can do that as adults too. Let's go in different directions. Let's see if we can try again in an hour," seeing if there's any outlets for her, supports for her in terms of her being able to discharge and process some of that anger, again, through writing, through music, through young adult forums, adolescent young adult forums, counseling.

Getting counseling sometimes is helpful because it is hard to do it on our own and have a third party who can manage. You can just, in a sense, be a patient, be somebody who can respond and let somebody else sort of manage and run and process it. Are there things that you've done that you've found helpful?

Yes, and they might be able to set limits with her in a way different than you can. I think that's wonderful. It's a family issue, and to bring in family help. There was someone in the networking group yesterday who mentioned that they found kind of fighting against the caregiver as motivating because they felt like, "My caregiver's really irritating me. It motivates me to get this done so that they can stop bothering me." You know, there might be all kinds of dynamics going on; and I think it really speaks to, again, if there are ways that you can find to take care of yourself, sometimes just talking to another parent, talking to somebody else, talking to another parent of a survivor, or not because some of that sounds like it could be sort of normal adolescent stuff too. I will say most often underneath that there is so much love and there's so much gratitude. It often isn't until later, I mean, we see this in adolescents in general. They fight us. We don't get it. We don't understand. Then, later, like in their 20s, they come back, and they say, "Wow. Thank you," or, "I realize I really made things difficult for you. Thanks for staying with me," or, "I appreciate." Hanging on, knowing that part's a marathon too, and hopefully that she will come back around.

You described perfectly that it's not a single event. It's multiple events. It keeps coming. Some are planned but many are not. I think about that commercial with the car that has a GPS that keeps rerouting. "Oh, no. I have to do it differently. Oh, no. I have to do it differently." But that takes so much energy, so much mental energy, so much physical energy. I think that's where, again, getting help [is necessary]. Again, as a psychologist, that's a lot of what I do with folks. Okay, here we are. You've been hit with something else. How can we give you the space to let down, to be angry, to cry, to do whatever you need to do, and then say, "How do we reroute? How do we adjust to this new thing? What do we need to bring to bear?" I think the coaches can do that too, which can be really helpful because it's hard to do it on your own.

We've got time for one more question.

48:54  How do you deal with friends who abandon a patient after transplant: [Audience question]: I think I've been doing this for I guess 12 and half years now. The thing that's probably irritated me the most out of the entire experience is people, maybe you can help shed some light on it, make me feel better about people, but so-called friends of people that you thought were friends, her good buddies, they shop together, they work together, and they did all of these things. What make them disappear and not show up when someone goes and becomes like this? They disappear, and they've been gone for the 12 years. I'm just really trying not to be angry with these people. If I run across their paths now and they happen to ask the question about, "How is she? How's whatever?" I'm ready to kind of forget that I believe in God.

 [Dr. Bishop] What an excellent, excellent point. It is absolutely heartbreaking when that happens, and it's heartbreaking that it's pretty common. It's interesting I think for a lot of families is they discover the surprise of who's not there. Now, the good news, they also can discover the surprise of who is there, sometimes unexpected people or neighbors or people that they weren't particularly close to who are really there. Again, human experience is often very rich. You know, I don't have a single answer.

I think fear, discomfort. People tend to be avoidant when it's something they don't know, they don't understand. They get uncomfortable with pain. They get uncomfortable with illness and disease. Sometimes we end up reassessing our friendships and noticing as we look back that maybe those weren't as deep as we thought. That's very painful. It is an opportunity for us to seek others who do understand, who are there in the way that we need them to be, who share the same values. It is very difficult, and it's hard not to feel deeply hurt and angry. I think about what another participant said, is that process of letting go, of trying to accept, working through that anger and then letting it go and realizing that they're missing out too. They're missing out on your love, on your friendship, and on the whole experience of caring. I'm sorry that that's happened.

 [Moderator] If you speak quickly.

 [Audience member] I just really wanted to kind of answer your question as well because I felt a lot of that as well. I think you're absolutely right. People don't really know. I think we all can attest you don't get it unless you're in it, unless you're dealing with it. Funny enough, where I found the most support for my friends were people who had a granddaughter with leukemia or had a family member with cancer, who they get it. They're in it. They get it. They know how much help you need. Those are the people that ended up bringing me dinners and helping out, anything I can do. Everyone else, it is hard because life's going on for everyone else. It's hard to even accept that where you're like, "Help me. I need help," and they're not around, but they just don't really understand it is my feeling because I know I didn't. I mean, there was a time when other people were going through cancer at the school that I taught at and I didn't bring a dinner. I didn't get it. Now, I'm like, "What's wrong with me? I should have been helping and doing something." I didn't. That's like another little guilt thing I have going on. I feel like I should be helping other people, but I can barely breathe myself. I just don't think people know, but if you've gone through it, then you get it. That's where I found the most support,.