How to Navigate the Challenges of Caregiving

Transcript of Presentation:  

(00:01): Marsha Seligman: Introduction. Welcome to the workshop: How to Navigate the Challenges of Caregiving. My name is Marsha and I will be your Marsha Seligman for this workshop.  

Before we begin, I'd like to thank Kite A. Gilead Company, the William G. Pomeroy Foundation, Astellas, and Jazz Pharmaceuticals, who support and help make this workshop possible.

(00:22): It is now my pleasure to introduce today's expert, Dr. Michelle Bishop, and five care partners who will share their insights on caregiving. Dr. Bishop is a clinical and health psychologist with over 25 years of experience helping patients and families cope with cancer, cancer survivorship, and caregiving. She spent the first half of her career at the University of Florida, first as a clinician providing care to Bone Marrow Transplant (BMT) families and later as a faculty member conducting BMT quality of life research.

In 2009, Dr. Bishop moved to private practice. She currently works with BMT InfoNet on projects designed to address the unmet mental health needs of transplant families. She serves as a lead facilitator for BMT InfoNet's Graft-Versus-Host Disease (GVHD), survivor caregiver, and bereavement support groups. Please join me in welcoming Dr. Bishop.

(01:29): Dr. Michelle Bishop: Overview of Talk. Hello, everyone and welcome. I'd like to thank BMT InfoNet for the opportunity to participate in this wonderful symposium. And to all of you who are watching and listening today, thank you so much for being here.

(01:42): For this hour, we will focus on the unsung heroes of BMT and chimeric antigen receptor (CAR)-T cell therapy: the family caregivers. Family caregivers play such a critical role in making BMT and CAR-T cell therapies possible and successful. As you're likely aware, these therapies are so intense that they require a 24/7 caregiver be present during and immediately after treatment. But as you'll hear today, ongoing support and care from family caregivers continues way beyond the acute treatment and early recovery phases, and into long-term survivorship.

(02:17): Family caregivers are more than just a critical support to patients and survivors. They're also fellow travelers, or we could say ‘co-survivors’, on this road of treatment, recovery, and survivorship. This is especially true for spouses or primary partners of survivors. To acknowledge both aspects of the family caregiver experience, I will be referring to them interchangeably as caregivers and care partners.

(02:44): This presentation is going to be a little different. Instead of hearing primarily from me, you'll be hearing directly from five care partners who've been on the BMT, CAR T-cell therapy, and GVHD roads for some time, and graciously shared their lived experiences and their learned wisdom as they looked back on their respective journeys.

(03:04): These five care partners are: Crystal from California, whose husband had three transplants for a very rare skin lymphoma. Crystal had a full-time job while raising their four children during her husband's illness and treatment.  

Ed from Florida, who was retired when his wife had an allogeneic transplant for acute myeloid leukemia (AML). After several years of recovery, they're both back to enjoying an active life together.  

Marilyn, who is also from Florida, whose husband was transplanted for myelodysplastic syndrome (MDS) and is now living with chronic GVHD. Marilyn's husband was transplanted in Pennsylvania so that they could be closer to family support, and after a couple of years of trying to manage medical care back home in Florida, they ended up relocating permanently to Pennsylvania to be closer to ongoing specialized medical care.

(04:00): Joe from Maryland, whose wife underwent both a transplant and CAR T-cell therapy for non-Hodgkin lymphoma. They had very young children at the time of his wife's diagnosis and treatment, so Joe had to juggle caring for them, caring for his wife, and working full time.  

And Sue from Minnesota. Her husband was transplanted for AML and then experienced a period of GVHD about three years after transplant. They had two young adult daughters when Sue's husband went through treatment.

(04:32): I had the privilege and pleasure to speak with them earlier and ask them about their experiences. You'll be seeing excerpts from those prerecorded conversations and hearing their words of wisdom and sage advice. The caregivers noted that caregiving can be overwhelming, so it's important to give yourself grace and recognize you're doing the best you can.

(04:59): Crystal: The caregiving part was definitely a full-time job. I had a full-time job. I was an assistant principal at a high school at the time. So, managing my job with four children, and Eric working as well with his sickness--managing all of it was a little bit overwhelming.

(05:20): Joe: Yeah. In terms of juggling roles, I feel like the answer is you can't. For me, a lot of it was there's all this stuff to do. There are new things to be concerned about with my wife's treatment and taking care of the family, and everything. Part of it just came down to admitting to myself that I'm not going to do it all. My wife and I would always joke, anytime the laundry didn't get folded or something not terribly important didn't get done, we always would jokingly say to each other, "We're just doing the best we can right now." So that was sort of our mantra in terms of juggling the different things that needed to get done.

(06:11): Dr. Michelle Bishop: The care partners talked about some of the caregiving roles they engaged in, such as providing direct care for their loved ones, managing medications and medical appointments, and the importance of advocating for both their loved one and themselves.

(06:28): Crystal: When it comes to your spouse and what they're dealing with, and the illness, advocating is critical. Communicating with the doctors, being at the appointments, making sure that you're writing things down; the documentation is really important. Just talking to your doctors and asking questions, and if you don't think that something is right, then you communicate that.

(06:51): Ed: When we got to the hospital and were housed for the treatment of leukemia, it became very apparent that the doctors, the nutritionists, and the hospital itself didn't really provide adequate sustenance through their normal process for vegans, which Laurie has been since the ‘80s.

(07:20): The nutritionists at the hospital actually became very excited, because we became an advocate for them making changes, and Laurie steadfastly refused to move off of her vegan diet. She was getting the protein she needed if they had the right foods, and the hospital actually had to make some changes in what they procured. I guess that was the beginning of our attitude, that this is our journey and the hospital and doctors are a very significant part of that, but it's still her journey that we need to focus on.

(08:00): Crystal: You have to talk to the doctors. You have to be part of this team with them, because they're going to share things with you or offer things, and if you aren't okay with it, research. We tell people all the time, "Do your own research, look up what the process is, what do the drugs say, what are the side effects? Write your questions down and ask them." Those are the things that are really important. Sometimes I tell the doctor, "Could you break it down to me in layman's terms? Because sometimes I don't understand what you're saying, so could you break it down so we really understand the process?" His doctors were amazing at doing those things for us.

(08:37): Sue: Another thing in terms of advocating for yourself is, in our case and I hope in many cases, the patient, my husband, looks great. You cannot believe the number of times I hear people say, "He looks healthier than ever. He's playing 18 holes of golf. You'd never know anything happened to him." And I'm like, "I know. And when he gets home, he has to rest for a long time. He has neuropathy in his feet, and so we have to put some sort of medication on him, or I need to rub to his feet, and at times he has no energy."

(09:14): So you don't see those parts, which I'm grateful they don't see those parts, but it is a lifelong journey and at times I need to remind people that that might not work for him, or I need to let him be able to say that as well. "I can do this. I can't do that." Then, the one thing that does click for people, which I think has been a way of advocating that I hadn't thought of before, is when they say, "Wow, he's doing so great." And I say, "He is, and he still takes 23 pills a day." And they're like, "You're kidding."

(09:50): Dr. Michelle Bishop: The care partners talked about finding ways to communicate with their larger support network that were efficient and minimized burden. Here's what they found to be helpful.

(10:00): Crystal: Writing one update to share with multiple people simplifies communication. As far as navigating what we did when outside people wanted to know what's going on or help, I would just type up things in notes and share the update with family or close friends. Then it was just one set of information. So I wasn’t having to continue to talk to people and communicate, because it's a lot, and sometimes I wasn’t in a place where I wanted to have a conversation. I could send out a text with this is what's going on and then let them know that when something else changes, I will update them. That way they know, and they're not constantly calling.

(10:40): Sue: We continue to use a website called CaringBridge. It's available to everyone, you can use it at no cost, and it's a resource that people can use to update people on how the patient, how the person is doing. It decreases the burden--the responsibility of the caregiver to tell the story over and over and over. We were able to keep people updated and then they were able to write a note back. And that became part of our uplifting practice, especially when the times were really tough.  

As this is a lifelong journey, every year on his transplant birthday, we post again on CaringBridge and we give people an update. We just did that at his seventh birthday for his transplant this last month. We posted a picture of us golfing and a picture of him with his birthday cake with seven candles on it, because he has all new DNA, so he really is only seven years old.

(11:48): Dr. Michelle Bishop: Social support is so critical for getting through treatment and recovery successfully. There's simply too much to juggle alone and people want to help. Although it can be hard, the care partners emphasized how reaching out for support and being specific about needs was both helpful for them, as well as for those offering help.

(12:08): Marilyn: I mean, I think everybody should get as much help as they can for things that they don't absolutely have to do, and simple things like walk the dog, go to the grocery store, things like that. I think the other advice I would give is to not wait for people to offer help, but to ask for help.

(12:28): Crystal: For me, things that were helpful were, I was in a small group in my church--it was a women's small group--and so that was really kind of transformative as far as the support that I needed. Sometimes as women, and as mothers, it's difficult to ask for help, because we don't really want to burden somebody else with what we're dealing with. So, they prayed for us. They would bring meals over when I was having to drive back and forth to Stanford with Eric. So those things were life changing, not having to figuring out what we’re going to eat for dinner and what I'm going to cook for this. And then, not having to do any of that, it just lifted this load off of me.

(13:08): Joe: We have a neighbor across the street who's very good at doing research, so while my wife was  going through treatments, I’d be like, “oh, we're thinking about this one particular treatment option,” and he would be like, "I'll get back to you in 24 hours," with spreadsheets and all this research that he did. So, people contributed in what ways they could, which we were always very appreciative of.

(13:35): Crystal: Requesting specific help from others when needed is important. The thing to remember is to just be kind of specific. Sometimes someone would ask and I'd be like, "Oh no, we're fine. I don't need anything. We're okay," when I really did need something. They’d respond with, "let me know what you need,” and it just felt like this open-ended, extra burden to ask for help.  

So sometimes I would just say, "What I could really use is, would you mind picking this up from the store for me, or would you mind making a dinner?" So then just giving people specifics on things or, "Would you mind coming to just sit with Eric for two hours so I can run an errand?" So being more specific and saying, "This is what exactly what I need."

(14:18): Sue: And then, not to be afraid to ask, "You know what? I need someone to send out my Christmas cards this year. I might have the time, but I don't have the energy. I could take my husband to the appointment, but if you're willing to drive him, that's okay." I don't have to have a need. I can want to give myself a break and let somebody else feel like they're helping. That's a gift you're giving to the other person. So those kinds of things have been very helpful, to advocate more for myself and at the same time be a blessing to others so that they can step in and feel like they're making a difference, because they do.  

(14:56): Sue: Now, another great thing about advocating is, and sometimes it's hard to ask for help, CaringBridge now includes MealTrain, so you can click on that right there It's a one-stop shop. If you need a GoFundMe page, it's right there. If you want to give a patient a gift card, it's right there. If you want to send them money into a DoorDash account, that's fantastic as well.  

And there are also minor ways to advocate. Like I said, the MealTrain is lovely, but you know what? One of the things I missed was going to a restaurant. And so, people think, "Oh, I've got to make a homemade meal, because that feels like care." There were times when I said, "You know what? We'd really like some restaurant food. There's this restaurant and we really like this item at the restaurant." And they were thrilled, and so were we.

(15:53): Dr. Michelle Bishop: As you will hear from our care partners, it's imperative for caregivers to take care of their own physical and mental health in order to go the distance and be able to provide the quantity and quality of care they wish to provide to their loved one.

(16:07): Sue: I think everybody wants to give you respite, like a gift certificate for a manicure or a massage. I was happy to take any of them, but it has to be more than the short term. The short term is fantastic. But how do you take care of yourself long term?

(16:26): Joe: I try to take care of myself as well as the family. You would always say you’ve got to put your own oxygen mask on first before you can help others. I always would try to eat well and exercise, and I did realize during this, that is important for me as well. I have to take care of myself if I want to be there for my family. Part of it was anxiety-driven so it wasn’t just like, "I'm going to do what's good for me right now and do some pushups." But it was more "Oh my God, I’ve got to be healthy so I can take care of them."

(17:11): So that was a big part that stuck with me. We're not so much in the danger zone as we used to be, but I still think those exact thoughts, which are like, "You have to take care of yourself, because you don't know what's going to happen, so why not remove one unknown?" I know I'm doing everything that I need to do to stay healthy, so I don't have to worry if I just make it part of my routine.

(17:49): Crystal: There was a breaking point for me, where I just kind of lost it, because it was just so much. It was so overwhelming, and that's when I realized I can't do this alone. I need to find time for myself. I have to--If I'm not replenished, I can't pour back into him and the kids.  

So while we were doing the third transplant, we were staying at an apartment closer to Stanford. They had a gym, so I would go to the gym once a day for like 45 minutes. As soon as he was at a place where he was sleeping and the girls were in school, then I could kind of slip away and I would do that. That was helpful.

Going for walks, just going to Target and walking around mindlessly, where my brain could just rest. Those things were important. Finding books and small groups. So just prioritizing it. That's really what it came down to--just being intentional and the intentionality of making sure this is a priority. If I'm not in a good space, then I can’t make sure that I pour into my husband and my family.

(18:56): Ed: One of the things that occurs in this process is, there is a sense of selfishness that you have to keep for yourself. I, at that time ,was a season ticket holder for the Marlins and Tampa Bay has a baseball team. So, while we were in Tampa, I used to go to baseball games and I would just walk out of the hospital, and go over, And I had friends, I met friends up there through Rotary that I knew, and we would go to baseball games.  

Or when I put things in the room that we were staying at, when we were commuting to and from the hospital, I brought all my paint supplies. As you can see behind me, I'm an amateur, but not very good one, but I'm an amateur painter, so it was important for me to maintain some of those things.  

And we both tried to keep our own habits. We both do a lot of exercise, so in the later recovery stages we brought a bicycle up there and put it on what's called a trainer, where she could bicycle for an hour a day. She loved that. That was very important to her. So we tried to maintain our normal lifestyle. We tried to keep our focus on the things that were important to us throughout this whole process, notwithstanding what was happening.

(20:29): Dr. Michelle Bishop: Caregivers also need to maintain their emotional health and well-being. There's no doubt that going through BMT. CAR T-cell therapy or GVHD can be stressful, and scary at times. These care partners talked about the importance of taking care of one's own emotional health and well-being along the way.

(20:43): Sue: There's a phrase that I like, which is we all need to dump our bucket. There are times when we need to tell people how awful it is to cry our eyes out. Where’s the best place for me to dump my bucket? Is it with my friend? Is it with a family member?  

But for example, there were times that I was scared to death. I was not going to share that with our two daughters, even though they would've been my easy go-to. So, I needed to find appropriate places for me to dump my bucket. And for me, it was in my journal, it was in my support group, it was with a nurse outside in the hall, and at times there are people that get it.

(21:26): Joe: Counselors or therapists can also help caregivers maintain their mental health. Yeah, I mean, the effect on me personally as the caregiver, number one was definitely anxiety. I mean, you just don't know what's going to happen, right? There are so many unknowns, even if not week to week, day to day. So that catches up with you. And again, it's a weird thing when you're going through it. You're not thinking, "Oh, I really hope I'll gain some important life lessons out of this experience."

Looking back now, I almost realize, I wouldn't say I'm grateful for the anxiety, but the techniques I had to develop that really helped me during that time,  I still use today are invaluable. But what was really helpful for me is, again, I was lucky enough that through my health insurance, my doctor provided short term counseling services through the website. So, for a few weeks I had a virtual counselor that I could speak to, which I found very helpful. So yeah, being able to speak to someone, even temporarily, with a therapist was extremely helpful for me. Just gaining some of those brain management skills that seem really crucial for dealing with something like a loved one going through a bone marrow transplant or CAR-T therapy.

(23:19): Marilyn: Another thing that has helped me also, again from BMT InfoNet, was being able to find a therapist through that. And the therapist gave me several good suggestions which helped me find friends in Pennsylvania. She suggested I set up a book group and I did that. At first I thought, "Oh, that's way too much. I can't take that on. I've got too much to do." But eventually I felt like I had enough space, so that I could start the book group. And I have really enjoyed meeting with these ladies. We only do it once a month, but it's wonderful support for me.

(24:05): Dr. Michelle Bishop: Often those in one support network are not familiar with BMT, CAR-T or GVHD and don't really understand what the recovery and survivorship experience is like, which can lead to feelings of isolation and loneliness for caregivers and survivors. These caregivers talked about how helpful it can be to find others who get it, if possible.

(24:28): Crystal: I did feel like I was isolated because people didn't understand. Because for the most part, he looked fine. If you looked at his face, because the symptoms of the disease would kind of go in and out, he looked fine. But then he had it on his skin below, underneath his clothes, you could see it and then just internally, were the parts that you couldn't see. And then the toll it was taking on his body.  

So people didn't really understand. At the time, there wasn't really anyone to talk to. There weren’t really any resources. And so, I think those are some of the things that we've gotten out of this journey--that we need to be a resource for other people, because we didn't have that. There weren’t any. I wish I had someone to talk to, to say like, "Hey, how did you navigate this? What did you do? What happened in this situation?" But his cancer was so rare then that there wasn't really anyone to talk to.

(25:24): Marilyn: Support groups with specific understanding of transplant like BMT InfoNet and similar resources can be very helpful for caregivers. I think one of the things that I have learned and been disappointed in, is that I think people do not want to hear about your journey, in general. So, I have limited the people that I talk to now. I only talk to supportive people, and those are people who understand chronic illness, and are people in support groups who are maybe traveling the same journey, and a therapist.  

The first thing that has helped me tremendously is BMT InfoNet and their support groups. In my case, a GVHD caregiver support group, where I met people who understand what I'm talking about, it's not foreign to them and that's a wonderful feeling, but they've also become my friends and sources of information for me. What I learned from the support group, I take back to the doctor sometimes or I try it in my own life, which is really helpful.

(26:27): Sue: Another place I found that was very helpful was a BMT InfoNet GVHD support group on Zoom, which was even better. So, I joined that group and had a chance once again to say, "I have to do it myself, but I don't have to do it alone." And I walked away from that experience with a connection with other people that gave me great gratitude for where I was at, great compassion for others. It wasn't that it gave me any medical advice, but it gave me emotional support and a way to connect in a way that no one else would understand.

(27:07): Marilyn: The other thing that I have done to help myself through both the transplant process and the after-transplant, the GVHD caregiver process, is I've participated in the Cancer Assistance Resources and Education (CARE) center at the Cancer Institute for the transplant center we're at. It kind of takes care of the rest of the person, not so much the physical, although there is physical that I could participate in if I wanted to, but it's the mental and social aspect of help that I have needed.

So, I have really taken advantage of that too. I've brought my husband along, and we've enjoyed the things we've done there. One of our favorite things is Write from the Heart, where we get together with a group and we write every Thursday afternoon with a published author. Through that I've gotten to know more about myself, but also I've developed a whole group of friends and they don't have GVHD, but they have cancer in some form or another. And so, we all are sort of on the same wavelength again.

(28:30): Joe: The other main resource that we found extremely helpful where we live in Baltimore is this organization called Hope World Cancer Support, and it's just a local organization that does activities and support groups, but they’re very kid and family focused. And they offered a lot of opportunities for our family to go to.  

Their office is in this barn that they converted, so it was this really nice space with this really beautiful garden behind it. It was great for us to be able to go there and do a bunch of activities with them that were not just ‘meat and potatoes’ cancer support, like how do I deal with this anxiety? Just opportunities even for the kids to be around kids like them and do things to sort of have a good time and not think about cancer, surrounded by people who are also dealing with cancer.

(29:52): Dr. Michelle Bishop: It was really inspirational to hear the caregivers talk about their mindset and how they approached the challenges they faced during treatment and survivorship.

(30:01): Ed: Well, I think we both went through this process not examining what the prognosis was so much, as we were paying attention to the direction of our doctors. We put great faith in our doctors that they were steering us to the best of their ability, and we certainly didn't have the ability to do that. So we didn't look at what the odds were about outcomes. We simply accepted each new challenge as it occurred. And every week there was a new focus, a new challenge, and we just accepted it and said, "Oh gosh, I guess we have to do that too. Let's just do a good job and make sure that everything is focused." And between the two of us, I think we were well-paired to do that.

(31:02): Joe: We are always very realistic about what the dangers are, but also try to keep in mind, and still try to celebrate the things that are hopeful. We always say like, "Any excuse to have cake." So every time we hit a milestone, it would be a good excuse to sort of celebrate.

(31:34): Marilyn: Well, we have more things to celebrate now than we used to, because now we can celebrate rebirth days. That's what I'm calling them. And this year it will be his fifth rebirth day. So, we will have a party invite, probably just friends and family, but it'll be a great reason to get together and remind us how much we have to be thankful for.

(31:54): Crystal: This journey of cancer has been very transformative,. I think for both of us. It's caused us to really reflect on and kind of change our mindset. One saying I love is “finding joy in the journey.” In this journey of cancer, where can we find joy? Because if you can't have joy, then you're in this place of darkness and unhappiness. Even though we were dealing with cancer, where's the joy in this process?  

So I got a tattoo that is a daisy, but it says, "Find joy in the journey," and has Romans 12:12. And I think that finding joy in the journey of whatever we're going through is so critical, because it helps you to look at the glass half full instead of half empty, and it helps you to find just one small thing that it could be. It could be like I'm walking down the street and I see some flowers, or I go to the grocery store and somebody offers to pay for my food. Any little thing that's happening to you during the day in the midst of whatever this storm is, and this trial is. If you can find some joy then it helps you to keep things in perspective, but then it also helps you to just kind of stay grounded.

(33:11): Sue: I would say mindset is what my go-to is, for how can I manage. The only control I have is how I choose to respond. How can I see this not as totally negative or totally Pollyanna positive, but to be real and hopeful about it?  

And I have a visual aid, and that is this piece of paper. There's a very brief story that goes with it. The story I was given is that one day a professor handed out this piece of paper to each person upside down on their desk, and he asked them to take 10 minutes to write down what they saw. He collected the papers and read through each one of them. At the end, he said, "You know what? Every single one of you wrote about the black spot. How big it was, why it might be there, what it might mean. None of you wrote about the white space."

And with that, that's how we tend to look at our problems. We focus on the negative and we forget all the blessings and the positives that surround that black spot. The black spot's still there but remember to consider all that we have along the rest of the paper. And that's really what I did and do, along with Stan, my husband, is what's in the white space? The reality is, we know what’s in the dark space. So in our case I say, "What do we have with the second chance of life? What is good about it? How has it made me better? What else can I do to add light and energy to all that I do? Because now I am a living example to others of how you go through the toughest of times."

(34:54): It can be helpful to focus on the positives. From day one, I don't know where I got this idea, but day one, he went into the hospital, I went to the office supply store. I'm like, who goes to the office supply store? I did, because I bought one of those monthly calendars you can put on the wall around the desk. And we taped it up in the hospital room and I said, "Every day, let's write down at the end of the day, what was the white space?" Although we didn't know that term at the time. "What were the bonuses? What were the positives today?"

(35:21): And after I put up the second month calendar, I went, "This is a good practice." Now his home office is completely wallpapered with over two years until we ran out of wall space of these calendars. And it can be as simple as our baseball team won. It was sunny today. I got a call from someone I didn't expect. And so, it's saying stopping and having conscious gratitude for the bonuses in each day.

(35:54): Dr. Michelle Bishop: Here are some final reflections and suggestions from our care partners.

(35:58): Marilyn: Caregiving can bring unexpected benefits for caregivers. I guess if I was going to say anything at the end, I would say it has been a long road, but I don't tend to look back that much. Every once in a while I look to the future and I go, "Oh my gosh, I hope we get through this soon." But I have survived it. I probably have even thrived in some ways, like finding new support systems and things like that. I think I have probably grown. I have become more independent. And on top of that, I know that I can do things that I would probably have been afraid to do before. So, I've been able to see some growth in it for myself. I think one of the big things I have had to let go of is some perfectionism, and I have to know these days that my best is good enough.

(36:59) Joe: In terms of advice, the main ones are about probably just being patient and realizing that you're just a normal human, you're not superhuman. So being patient with both the person you're caring for, but also with yourself. And then the only other thing I was thinking about goes along with the idea of putting on your own oxygen mask first. I guess the advice would be take care of yourself, so the person you're caring for doesn't have to take care of you.

(37:52): Ed: I'm not sure there's any direction I can give anyone who is entering this aspect of their life, other than you need to consider who you are and you need to work with your person as much as you can. Whether that means exercising, communicating, or taking care of yourself and taking care of the person who's going through this. I think you just need to be thoughtful about what is best for you and try to be true to yourself.

(38:43): Sue: What I say is lean on your strengths. My strength is communication and project management. So, I was very good at keeping the calendars, keeping the medication organized, keeping everything on track, and also being the communicator and using CaringBridge or another method to keep people informed. So, whatever a caregiver's strengths are, whether it's being assertive, being analytical, or being a relationship builder, lean on whatever your strength is. Identify it, know it, and use the heck out of it.

(39:25): Crystal: I just want to encourage caregivers. I know it's a difficult journey, but I think it’s also an honor to be able to serve your spouse in that way. But it's hard. So, I think making sure that you find time for yourself, and that you find a village to support you is really important. Then, just making sure that you advocate for them and make sure to communicate with them, and try to find some pockets of normalcy to create some memories together as well. So yeah, just encourage them because it is hard -- I don't want to minimize that part of it, because it is a difficult journey -- but if they can do some of those things, I think it will help the journey be  not as difficult.

(40:17): Dr. Michelle Bishop: I want to sincerely thank these five wonderful care partners for sharing their stories, experiences and sage advice. I hope that you found their words of wisdom to be helpful and uplifting. Some of the care partners mentioned specific resources that I just wanted to highlight here.

(40:34): Here are some specific resources that may be helpful. Sue mentioned Caringbridge.org, the free website that helps families communicate with and get help from their support network.

(40:42): Marilyn mentioned finding a therapist through BMT InfoNet's free searchable directory of mental health practitioners, at bmtinfonet.org/mh-directory, who have experience working with BMT, CAR-T, and GVHD survivors and family caregivers.

(40:56): Both Marilyn and Sue mentioned BMT InfoNet's online support group program for GVHD caregivers and survivors at bmtinfonet.org/support-group-list. These are professionally facilitated groups that meet on Zoom.

(41:08): Additional caregiver resources from BMT InfoNet include a peer-to-peer support program called Caring Connections at bmtinfonet.org/caring-connections, excellent written information, and other webinars on caregiving and survivorship that you might want to check out.

(41:21): Lastly, other organizations that have excellent BMT, CAR-T cell therapy and GVHD caregiver information and support resources include the National Bone Marrow Transplant Link (nbmtlink.org) and the NMDP (nmdp.org). Thank you again for joining us today.

Question and Answer Session

(41:42): Marsha Seligman: Thank you, Dr. Bishop, for this excellent presentation, and to the care partners who talked openly and honestly about the challenges of being the caregiver for a stem cell transplant or CAR T-cell therapy patient.

(41:54): Let's go to some important questions. The first question comes from someone who would like to know why hospitals can't make opportunities to meet with fellow caregivers.

(42:17): Dr. Michelle Bishop: Thanks, Marsha. And it's a great question. Here we are talking about the importance of finding others who are walking the same path, and it would be ideal if that was facilitated, particularly at transplant centers. And I'll say at some centers they do. When I was at the University of Florida a number of years ago, they did have a BMT social worker who facilitated a weekly support group for BMT caregivers. But unfortunately, not all centers have the resources, social workers or individuals to do it, the time, or the setup for it.

(43:00): I will always encourage folks who are walking the path to try to advocate for themselves, and you can let your team know if you're interested in meeting other caregivers or family members who are walking the same path. You can let them know you would be open and interested in meeting someone else. Could they think of some other families they're working with that might also be interested? If you're on the transplant unit, maybe letting the nursing staff know or putting up a little sign and saying, "Hey, I'm here. I'm a BMT caregiver, CAR T self-caregiver. I'd love to meet somebody else." So there may be some ways to make it happen, but I agree, I wish in an ideal world it would be part of the standard of care for everyone.

(43:55): Marsha Seligman: The next question is coming from a parent of a young adult survivor. They said they are having trouble letting go and allowing their son to move forward, and advocate and care for himself, and they'd like to know if you have any suggestions.

(44:12): Dr. Michelle Bishop: This is a fabulous question, and I'll say, I hear you in terms of the particulars. If you have a young adult survivor, and developmentally there's already a process of transition of going from the young adult being dependent on the parent and becoming more independent. But this question actually applies, I think, to everyone. Because for everyone, there's often a transition initially from let's say if you're a primary partner or spouse, from being equal partners to being more nurse and patient with the patient being dependent on the loved one. And then, later as the patient gets better and is ready to start to take back some of those roles, it can be hard to let go of some of those roles or know if they are ready or not.

(45:12): So I am so appreciative of this question. There's not a single answer, but I think it's a process if you can ideally communicate with one another and perhaps you share, "Hey, I want to support your independence. I want to support you taking the reins and taking responsibility for your own health, and I want you to be able to do that on your own," That's good for everybody, "But I worry, I worry are you well enough? Are you able to? Are you up to it?"

(45:51): Especially as a parent, you've probably been tracking a lot of things and the patient may not have realized everything that you're tracking. So try to communicate that. Maybe do it over time and say, "Would it be okay if I accompanied you, for instance, to a medical visit? I will take a back seat, I'll let you take the reins, but is it okay at the end I could chime in, if I have some additional concerns or questions? Would you be okay with me expressing that?"

(46:27): So you're trying to find a balance between really respecting and encouraging the autonomy and independence and responsibility of the survivor, whether they're a young person or an older person. And at the same time, not wanting anything to fall through the cracks, because you've been in that role and know what's going on. So I hope that's helpful, but I think really communicating, maybe thinking about transitioning over time. And then, I think if you're having trouble letting go, really trying to look at how much of that is your own worry, your own anxiety, and what are ways you can take care of yourself with that?

(47:17): Marsha Seligman: The next question comes from a caregiver who wants to know if the caregiver should report a health event to a physician if the patient chooses not to, meaning they thought it was important enough to mention, but the patient did not.

(47:35): Dr. Michelle Bishop: That's a great question too. And really relates to the previous question. Again, in an ideal world, I always encourage good communication between the survivor and the care partner. It's so critical and helpful when there's a care partner there, and they may notice things or they may observe things that the survivor's not aware of. Sometimes they might worry more than they need to, but it puts them at ease to ask a question. So I think if at all possible, have a conversation with one another and let's say the survivor says, "Oh, we don't need to mention that. That's not a concern."

(48:26): And if the care partner says, "But I worry about that, that would give me peace of mind if I can bring this up. There was this event and I'm wondering if it's significant." In a sense, "will you allow or may I bring it up if even if you don't think it's important, it would really help me. It would really give me peace of mind."

(48:47): And again, sometimes it IS really important. So if there's an openness and a willingness, and an acknowledgement that both of you are trying to do the best you can here, have different perspectives, different worries, and then you share it with the medical team, and then the medical team gives you feedback and will let you know, "I'm so glad you brought this up. Yes, this is important," or "This is a great point, but you know what? This isn't something you need to worry about", that helps both of you as you go forward and try to navigate, which is one of the challenges here: what is important to report and what isn't. So I think trying to communicate and understand that both of you have valuable perspectives is important. And more information is never bad in terms of providing that to the medical team.

(49:43): Marsha Seligman: Should the patient and caregiver go to the same therapist? Is that allowed or what are your thoughts about that?

(49:54): Dr. Michelle Bishop: Great question. There isn't a hard and fast rule. In general it's ideal if each has their own therapist. It just makes it cleaner. You can be absolutely completely assured that you have total privacy, that you can share openly and so forth. Of course, we're professionals and we take confidentiality extremely seriously. But I think for someone who's a client, who's a patient, it can really give you that much more peace of mind if you're seeing your own therapist. Sometimes it's not possible if you live in an area where there isn't a lot of access to therapists or your health insurance is covering this therapist and there aren't a lot of choices. So again, it's not that it's not allowed or it's bad, but it's just something to consider. It would be something you can discuss with a therapist as well as with your loved one, the pros and cons, and so forth.

(51:06): And I'll just add sometimes in my work, particularly if the focus really is adjusting to cancer or transplant, or survivorship, sometimes we'll invite a loved one into a session if there's something happening that would be helpful to have them there for. Sometimes it's helpful to have a therapist for the couple or the two, because there may be communication issues or there may be some relationship issues that are coming up. And so, then those get addressed in the therapy but separately from individual therapy. So lots of ways to slice it, and really the guiding principles are certainly for the individual to feel as comfortable to be open and as possible.

(52:08): Marsha Seligman: The next question comes from someone who has already been through transplant, but curious if there have been any changes in the requirements of how long you need a caregiver post-transplant. That was a very difficult time for their family, to find someone who could be available the whole time.

(52:28): Dr. Michelle Bishop: Yeah, I think centers really vary in terms of their requirements. And I'm sure with time, things change. Now there are centers that do outpatient transplants, so the whole landscape is continually changing. And of course a lot of it comes down to the individual, to the survivor, how are they doing? How ill are they? How vulnerable are they? How safe is it for them to be alone? But it is really challenging, and I think that is one of the things that's different about going through these really intense therapies, is the recovery period is intense and lasts longer than maybe conventional chemotherapy or radiation for a solid tumor cancer.

(53:26): And so, I think that's where we talk sometimes about ‘it takes a village,’ where it can be helpful if at all possible to get assistance from lots of people in your support network. And maybe that's having some people who can come and sit with your loved one if they really are very vulnerable and it's not ideal for them to be alone. Maybe they can come and sit for a couple of hours while you go and run errands or take care of something else that needs taken care of. I'll leave it at that. But no doubt, it is a big challenge and I think that's where the village can play a really important role.

(54:19): Marsha Seligman: So, this will have to be our last question since we are running out of time, but someone would like to know how to stay positive and not worry so much. They have trouble sleeping at night which makes caregiving during the day difficult.

(54:37): Dr. Michelle Bishop: Yeah, it's really hard. And I think one answer is first, there's no way not to worry. There are lots of ways to work with worry, so it's natural to worry. It shows how much you care, how much you love. It's accepting, first of all, that there isn't a way of getting rid of worry. It's more like, how do I learn to have this shadow, this worry companion with me, so that it doesn't interfere too much with my ability to function, which is think is what you're talking about in terms of it affecting sleep. So there could be lots of things like things you can do during the day, focusing on things that you can control and with those things, engaging in problem solving and if you need information, if you need support and so forth.

(55:42): Then with the things you don't have control over, then it's a different kind of coping. It's more emotion-focused coping. It might be working with those emotions. It might be talking to a therapist, a friend, going to a support group, writing, journaling, prayer, meditation, art, or music. So different ways of working with those emotions. In regard to them interfering with sleep, there's all kinds of great information about what we call sleep hygiene. And actually, for insomnia, particularly when it comes to worry, cognitive behavioral therapy for insomnia is a very specific type of therapy and can be very helpful. But there's some practices in terms of sometimes we go, go, go during the day, and then it's not until night when the dust settles that all the worrying thoughts come up. So if we're not able to sleep, it's important not to stay in bed longer than 20 minutes or so, and to get up, lights dimmed, try to stay relaxed, maybe write down all the worries, kind of do a brain dump if you will, do something that is soothing, gently with self-compassion.

(57:03): That's another great practice, to self-compassion, of kindness towards yourself. Of course you're worried, it's okay, it's understandable. And different kind of soothing practices until you feel sleepy again and then going back to bed. And certainly things like exercise and moving your body can help when your body's tired. It's a little harder for your mind to stay active in that anxiety state. If you continue to have issues, then certainly consider seeing your physician or a therapist, because there's a lot of really helpful tools out there, whether it's medication or therapy that can help with the worry--particularly because we're talking about a marathon, not a sprint here. So there's a chronic nature to this. And so, that care is for the long-term as we heard from the care partners, not just the short term. So hopefully some of that was helpful.

(58:01): Marsha Seligman: Closing. Those are wonderful suggestions. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Bishop for a helpful presentation, and the care partners who shared wisdom and experiences. And thank you, the audience for your excellent questions. Please contact BMT InfoNet if we can help you in any way.