 All right, well good morning everybody and happy patient safety awareness week. I am really pleased to be the moderator for today's webinar. My name is Sarah Miller. I'm our director of partnerships here at the Patient Safety Movement Foundation and today's webinar will be family caregivers caring for yourself and your loved ones. So before we get started, I'm going to walk through a quick agenda and we will start by introducing our lovely panelists for today's discussion. So in a few minutes defining what a family caregiver is and then, you know, a great discussion talking about the different experiences that our panelists have had and then at the very end, we will have a question and answer session. For those of you that have joined today, you will be unable to share your video and or unmute yourself. So at any point during the presentation, you have a question for one of our panelists. There is a Q&A submission at the bottom of your Zoom and we would really encourage you all to communicate via the chat if you guys want to talk to your fellow attendees as well. So moving on to the objectives, I will quickly go through these before I pass it off to our panel moderator. The first one is differentiating family caregiver from other members of health care team. The second is discussing the benefits, experiences and challenges of caregiving. Understand the signs of stress and burnout and how it impacts overall health. Recognizing the psychological changes that transpire when one is no longer a caregiver and finally identifying actions that caregivers can take to remain healthy. So with that said, I'm happy to pass it over to Carol Hemmavar and our moderator for today's webinar. Good morning, everyone. We are very happy to have you here today. My name is Carol Hemmavar and I am going to be moderating the panel and I am a patient advocate. I'm going to start and I want all the panelists to introduce themselves. So, Teresa, if you will introduce yourself, please. Hi, my name is Teresa Gentry and I have been a caregiver for both of my parents and for my husband for the last eight years after he suffered a spinal cord injury. Thank you, Teresa. Alyssa, will you please introduce yourself? Thank you, Carol. My name is Alyssa Caban and I'm based in San Jose, California. And I've had experiences in caregiving for my mother, my younger brother, as well as my father, which he recovered from a stroke as well. Thank you, Alyssa. And Stephen, will you please introduce yourself? Good morning. I'm 10-year-old Stephen Kofi. I am a caregiver for my son, Stephen, who had a liver transplant and a third generation, eight weeks old. And so I'm very glad to be here. Thank you, Stephen. Sarah, if you'll go to the next slide, please. So, I want to open this up today, sort of trying to frame what is a caregiver. And that's a very difficult thing to actually address because caregivers come in all states and sizes. They can be a spouse, a partner. They can be a child, a parent, a grandparent, relatives, friends, and sometimes will even pay for the services of a caregiver. And it may be also a combination of those. There is no time frame for a caregiver either. You can be a caregiver for a couple of days, weeks, months, years, and even a lifetime. And the other thing is the responsibility of a caregiver. Some caregivers may be there just to make sure their loved one gets their meals, their medications, they're safe. And it ranges the spectrum where some people have to do everything for their loved one to care for them. Caregivers, it can be an amazingly gratifying job. It can be an exhausting job. And it's also a humbling job to do. We have the great fortune today with Teresa, Steven, and Alyssa to have a combination of all of those things that I just talked about. But before we move on to the panel, I want you to realize that caregivers have sort of rights of their own. And that is why we have on the screen here today is, caregivers have to take care of themselves as well. And oftentimes they get lost in the mire of taking care of their loved ones. And that's why we're really here today is to be very frank about what are some of the things caregivers go through? How do they take care of themselves? And what are some of those highs and lows of caregiving? So I'm going to start and open up the panel. And one of the first questions I'm going to ask our panelists is, how do they get into caregiving? And what is sort of their role in the caregiving? Do they do it all the time? Are there certain things? Do they have assistance? So we'll just start to frame our panel. So I'm going to open it up and let's start with Steven. Steven, can you tell us a little bit about your role as a caregiver and how you view yourself in that role? Yeah, thank you so much. I'll tell you what I thought was going to be what life would be. This was not something I ever thought was going to be what life would be for me as a brand new parent, as a materially old child. It changed my life. And I thought my role as a new father was going to be teacher, son, how to be a respectful young man, teach him how to do those things that would make him a good citizen. But when he had his liver transplant at eight weeks old, what I found myself being thrust into was this role of not only just teaching him life skills in terms of manners and work ethic, but I also have now teach him about medical life skills. And that's something that I had to learn also because I'm not from a medical background. I'm a military officer and I've been in the military for over 20 years now and learning about this new language of medicine, learning about this new culture of medicine, learning about what it means to have my son be okay with his conditions, with having had a liver transplant. You know, it's interesting when I think about taking him out to the pool in the summertime pre-COVID, you know, he gets so conscious about wearing, about not wearing a shirt in the swimming pool because he has a scar. So not only did I find myself teaching him those kind of life skills, those basic skills of being kind, of being responsible, but now I find myself in caring for him to teach him other skills that I didn't think I'd have to, about learning how to navigate his own health care. And that's a new place for me, it's a new place for my family. And so it's changed me, it really changed me. Alyssa, tell us a little bit about how you got into this and how you see your role. Sure. So my mother was diagnosed with breast cancer when I was just finishing high school. So going into college, I knew she would be going through treatment. She wanted me to still continue pursuing my educations. I did go off to college, which was about 300 miles away from where we lived. And when I came back that following summer, her disease had progressed, so I did become involved so with being a caregiver for her during that summer period before I went back to school again. In that she was very independent for quite some time. She had a lot of pride in wanting to continue going to work through treatment. But as the radiation and chemotherapy combination treatments became really rigorous, she did become eventually disabled from her legs below. So that did elevate her care to, you know, level of a wheelchair. My younger brother and I would use a Hoyer lift, which was a device I had never heard of. And you become really involved as care when there's disability at that point. Similarly, my younger brother was diagnosed with Wilms tumor pediatric cancer in 2014, I believe, yes. And after I graduated college, I did have a job and I did quit my job to become a caregiver with my father for my younger brother. That scenario was different. It was he was capable to some degree, but we were caregiving for him until the end of life at that point. Last part of my caregiver story would be for my father a few years ago as he had a second stroke. So that was more of a family team effort with other people as well. And no, that is my story. Thank you. And Teresa will round it out with you. So I'm listening to the other panelists. I think one of the things I think of how I feel is sometimes I'm paving the way. I'm my background as I'm a nurse. So in my family with my other siblings with my parents, I was always looked at as the caregiver or who would make a lot of the health and medical decisions and get things organized. And with my husband, it was the same as a nurse. He looked to me to kind of figure out what all the medical jargon meant and make sure the right things were happening. So we still do that to this day. So I think there's a place, as Alyssa said, where you find where do you fit in in the family? If you have other people to help, what is your role? And then with your spouse, because that's the person that you're with all the time, you are the main person. And it does become a lot of a shared caregiving, I guess, shared decision making, which is interesting because you're trying to teach that person as well as you're trying to hope that you are making the right decisions. And there is a lot of pressure, I think, in figuring out who's the right person, what's the right thing? Who do I talk to? Who else do I ask? Do I let this person make the decision? Do I kind of weigh in on the decision? And it was interesting watching other health care providers and how they, when they found out I was a nurse, immediately would start to look to me to give me the information because they were more comfortable speaking my language. And I would have to get near the person they were supposed to be speaking to so they would look at them. But also I wanted them to decipher the language because I'm not just the nurse, I am the wife, the daughter. And so there's a lot of roles in there, but I felt like paving or going down the center and trying to figure things out was one of those roles. So I want to stay on that theme that Teresa just introduced and that is sort of that decision making. And so, you know, Teresa was a spouse and for her parents. But Alyssa, it had to be different for you because here you are the sister and the daughter. Talk a little bit like did you feel you had power, didn't have power? How did you, what was that experience like for you? Yes, it was unique in both scenarios. You know, I think it's fantastic Teresa had a medical background and I unfortunately do not, or did not at that point. I like to think that I've had some experience in that now. But with my mother, she was able to make a lot of her decisions herself. And maybe it was also just communicating to others that at points, although I was quite young, you know, I think it was just showing that my father is not here maybe at this moment. And I'm the one speaking on behalf of her and trying to find that confidence and communication style with whatever member of the healthcare team I was communicating with, that was really made me very nervous. So I think that was the experience with my mother, with my brother. He was diagnosed right after he turned 18. So I think the experience my father and I had was he may be of age, technically, but he still was having a hard time making those big decisions for his care. And my father was really the one that spearheaded, you know, doing research and deciding the best path for his care, explaining it to my brother and myself and, you know, us as a family coming together to make the right decisions for him. And Stephen, I'm going to ask the same question to you. You know, here you are, brand new father, just early into your marriage as well to your wife. What was that like for you? You know, that is a very interesting question. That is a very interesting question. I was so surprised, you know, and in the military, I'm very used to being able to control things. And I recall when my wife had, we had our baby, I went back to my office. And the reason I went back is because I sat there in my chair and everyone's like, hey, why aren't you here? Because I knew I could control what I do at work, but I couldn't control being a dad. That was such a new thing for me. And what I found after he had his transplant was that I had to learn how to become comfortable in the middle of chaos. And I had to become very comfortable living in this gray area, knowing that this normal that we have, not a new normal, this normal that is for us was OK. And so, you know, I go back to one of the things that Teresa had pointed out of how you had the engagement between providers and us as patients and how they sometimes didn't want to talk to me because I'm the dad. And in actuality, what we forced them to do is to talk to both of us because it's a shared, it's a partnership, a partnership in raising your child, but it's also a partnership in how we do decision making for medical care. And so that was one of those big things that I really had to get comfortable with is how do you get comfortable in the midst of chaos? How do you get comfortable when you're out of your comfort zone? Because this is now my reality. Right. And I'm glad you brought that up, Stephen, because when my daughter was sick and they knew I had some health care background, they would always wait to talk to me and not my husband. And it was very frustrating to him because he's like, I am part of this, too. And when I'm here with our daughter, I need to be receiving the same information. So I think sometimes that bias of, well, you know, the mom, the wife, whatever is the one that's going to be doing a lot of the caregiving, we have to dispel that. And it has to be talking to whoever there in the room at that time because that may be the caregiver for the moment. Absolutely. So one of the other questions, and Stephen, we'll start with you with this. Suddenly you're thrown in to be in a caregiver. You know, sometimes it evolves slowly over time. Sometimes it's within 24 hours. How did you manage trying to figure out all of this stuff? You talk about it in the midst of chaos. And then suddenly you realize you have to exit the cocoon. So in other words, you know, you get locked in this mindset, I've got to care, I got to care. And then you're like, but I got to pay the bills. I got to make sure if there's other family members at home or, you know, I can't just be locked in the hospital. I have to engage in the world again. So tell us a little bit about that. You know, one of the things that happens when you have a major event like caring for a chronically ill patient or any family member, anything like that, it causes you to focus on that thing. Right. And so what I found myself and my wife focusing on was his care. Certainly when he was so young, I mean, you think about it, the medical miracle and the science and the skill of those doctors and clinicians to take a seven year old liver and put it in a two month old body. And he's now eight years old. So he's doing fantastically well because of continuity of care and because of the partnership that we have with his providers. So one of the things that my wife and I did is when we were focused so much on him that we didn't get a chance to focus on other things. And so I want to address it in two ways. One, how did I start to focus on things that were not about him is one I had to realize that the world is still moving and revolving and turning even when we're in the hospital. And I have to still be a part of that world. So one was realizing that and making a conscious decision to still be engaged. I remember when I was, it was a few years ago, I missed a major milestone birthday because I was so focused on my son. And I think it was a year or so later I had friends that said, Hey man, you didn't do anything for this big milestone. Why? And I had to think and step back and say, You know what? I can't let my life stop because I have to care for my son. It is a part of my life. It is not my all my life doesn't consume all of me. And then the second part of that is I look about the relationship. And as you'd mentioned earlier, my wife and I were newlyweds. We celebrated our first wedding anniversary in the hospital. And so you think about how challenges and adversities can draw you closer, but in actuality, there's also a part where it could draw you apart because you're focused on the issues and the challenges and you don't get enough time to focus on each other. So my wife and I had to reconnect when Stephen got to a place where his health was on a good glide path up that we had to reconnect as a family so that we could not only be strong for each other, but that we could be strong for him. Trace, I'm going to ask you that same question. So I found exactly what you said, Carol and Steve, that when you're in the hospital and the crisis is happening, you're very involved there. You're very focused there and you basically have to just keep putting one foot in front of the other because there's so much new, is what I would say, so much new happening, so much happening fast, and so much of the unknown that many times it's very difficult to go outside that little box you're in. And it's not comfortable. It becomes a real kind of safety net. You're in there, you're focusing on that. That's all you have to worry about at the time. And I found that after a couple of weeks, I did have to come home and I did have to start thinking about the bills and different things. And I found it very uncomfortable, very difficult when I would call people on the phone that I needed to call about things. I would be crying because I would be telling part of the story that had happened. So there was a lot of emotional pieces that came back together with that. And I didn't feel, I guess, comfortable leaving the bedside either myself for quite a while. Knowing that there were so many things that kind of depended on either decision making or people depending on me. So eventually when I did go out the first time with friends, I met them and it was very difficult. Basically, we went for coffee. I think I cried most of the time and I felt guilty because I could leave and I could go do that. And my husband could not. So there's a whole lot of emotions in there that you have to put together. And when there is a crisis, it does focus everything, but when it starts to calm down, then you have to, like Steve said, figure out, now, how do I fit into the rest of the world? Because I was spending 12 hours a day at the hospital. When I would drive home, basically, you know, get ready to go back again the next day. So that's where most of your attention is. That's where you want your attention to be. But there's these other things pulling at you that you know you have to come back to. So Alyssa, I want to take a little spin of what Teresa started to allude to and that is guilt. You know, you feel guilty for, you know, missing out on other things. You feel guilty for there. But then there's also survivor's guilt that, you know, your brother passed away and you get to do things or experience and things he didn't. So just tell me about, you know, your experience with just guilt in general, survivor's guilt, you know, whatever you want to share with everyone. Thank you for the question and I think to Teresa's point, there's those types of feelings you have during the caregiving process and then there's the post caregiving process. So that's what I'll focus on because that's where I'm living now. And I think there's two types of emotions that I feel with survivor's remorse. One scenario is when I'm at like the highs of my life, a really happy moment. I'm celebrating something, I'm achieving new successes. Those are moments where I am excited, but then the first person I would typically call would be my mom or would be my brother. I mean, my dad is still here. So of course he is the first person I call, but I'm like, oh, they're not here. How is it that, you know, they are, I became so lucky to be here. And unfortunately, how in, how in the universe did they, you know, these are large questions that you ask yourself in this emotional stage of how, how did they end up having cancer and not surviving it? How did, how did that happen? And that it can really bring you down and you go through this sort of rabbit hole of an emotion thinking, okay, you know, I did everything I could for them, but then you back up and you think, did I do enough for them? Because I was a caregiver. Their life was in my hands for a point with my father, right? And that's where the survivor still comes in. Did I do enough? How is it that I'm less so lucky to be here? I wish they were here. That is the emotion. And I am so lucky I have supported people in my life to still celebrate and enjoy. And, you know, I will get married someday. I will wish they were here. And that emotion will probably come up. But I think even just, you know, in the everyday life, it's, I remember, I think of them and I, I just always, I remind myself that I did the best I could. But it can really arise some very difficult feelings. And my guess is sometimes it hits you and you're not prepared for it. It's an unknown. You don't know when those emotions are going to percolate up. And if people don't understand that, they don't understand, you know, sometimes why you are a little bluer. Suddenly something comes on and it's a trigger. I think that's only something caregivers can relate and understand to. Stephen, same thing. Alyssa, did you want to add on to that? Stephen, your thoughts? You know, I think the the challenge that oftentimes arises in terms of survivor remorse, if you will. Now, you know, Stephen survived his transplant. And I thank God for that. But I do oftentimes think about his donor family. And there are times that I want my son and I want to reach out to them to just say thank you. And I am a huge proponent of donate life. But I also have to think about in their gift of life, where they saved my son and potentially seven to eight other people. They still lost a loved one. They lost a seven year old child. And so I think about that. And, you know, I look at my son and I'll tell you their tender moment. I was given a bath one day and I kind of traced his scar on his stomach. And as I was thinking about that, I reflected on not only the fact that this family gave a gift of life, but it also reminded me that my son has a second chance at life. And so that is something that I don't take for granted. And I pray that my son doesn't take for granted. So when you think about it, yeah, even with a surviving child, there's still a little bit of survivor remorse, not necessarily for my son, but for that donor family. And so what I also often find is I talk with a lot of people in the hospital. I sit with patient and family advisory councils and specific liver support groups at our hospital. And I've seen and talked with parents who their children are at all stages from their pre-op, their waiting. I've seen the ones that have been transplanted and unfortunately the ones that have lost their child. And it's a very touching moment to be able to share with them. And sometimes I feel like asking, why am I so lucky? And that's hard, because I'm very thankful. But often I ask, why am I so lucky? Why were we so lucky that we found a donor in five days that my son was transplanted in seven days after being listed? Why were we so lucky? Because I know not everyone has that same luck, if you will. So oftentimes when you're thrown into a caregiver role, friendships, relationships change. They can change within your immediate family, people outside that just can't understand why you can't be there. Or if there's a loss of life, they want you to be who you were again. So, Teresa, talk a little bit just about those relationships from maybe your own children, your family, friends, like whatever. You really feel changed when you really had to jump into the caregiver role. So when I got into the caregiver role, I think the other main people who were affected, I do have three children. And I have brothers and sisters. And my husband also has a lot of brothers and sisters. So everybody was sort of floundering as to what do we do? What is our role? Can we help? Can't we help? And it was interesting to see different people over the years how they have changed, how they adapted in one way and then changed to another. I can say that recently my husband had a hospitalization. And each of my children played a different role. They've been very, since the very beginning of his spinal cord injury, it was always, we have this. Don't worry about it. When you ask us to do something, we're good. If you want to come visit us, we'll get dad in the house. If we have to carry him, it doesn't matter. We are there, we're going to do this, we're going to survive this. So one of them is a rational person. And he will say, and this sort of alludes to what Alyssa said, there is no good or bad decision, mom. There is the best decision you made at the time with the best information that you had. And that was really very extremely helpful to me because you're going through so much pressure at the time. Then I have one who is a little bit more of the caring. And, mom, I hope you're going to sit in the car and eat lunch with me and not just grab the lunch and go back to the room. That you're going to come outside and realize there is a real world out here. And take a few minutes and take a break. And then the other one is also a medical person. So he became the person I could call and bounce some things off of and ask, how do I, instead of me being on the ceiling, he could pull me back down and say, well, these are realistic things. With friends, friends have always been there to support. But I found in the beginning, when something happens, you just want to go into your own special sort of shell by yourself. You don't have the energy for other people. And so some friends backed off totally and didn't know what to do with that. Some friends would text incessantly thinking, well, she's not answering, why not? And so finally, I had to explain, somebody brought it to me like you have to, like a wounded animal, you have to go in, you kind of have to lick your wounds for a while. And then you can come out and rejoin and be with people. So that was interesting to see how different people were able to adapt to that. Alyssa, for you, your experience is so unique. And in some ways I hear it, and I'm like, did you feel like you were cheated? This is happening with your mom in high school. And then you're trying to go off and live the college experience, like all of these monumental moments What was that like? But then like, who were your friends? Who could even relate to you? Who was your support system? Thank you for the question. I think I'll first address when my mom was ill. I think the first discussion we had when I was going through, after I had graduated was, I had accepted an offer to go to school 300 miles away. I said, mom, should I just attend a different school closer? She's like, no, you've gotten to the school you're going. And I was like, okay, I mean, I can just look into ops and she's like, no, you're going to this school. And so that was her wish for me. And I'm grateful for that, although I was unsure. I still look back and I'm like, should I have to stay closer? But you know, I'm glad I achieved her wish for me. And I did that. I was still able to come back during summer times and at her end of life. And I know she's proud of me. So I achieved her wish with that. With my brother, it was different. This story, this part of the story was when I was abroad actually in London. I was on a train from Paris back to London where I was staying and I had a missed call from my dad but I didn't have service. So I called him when I got back. I had this feeling that something was off. I just had a feeling in my gut. And that's when I found out my brother was diagnosed with cancer. I was abroad. And so I quit my study abroad program. I came on back and I just took a little bit of time off of school to just be with my family as he got his resection and was recovering from surgeries. And that was difficult for me because at that point I felt, OK, is my education going to be set off now? And then when I did get my degree and I started a job, as I mentioned, I quit that job. And that was my decision. But I sometimes felt like I was really excited to start my career. I'm going to set this off a little bit. So there were points where I felt I was getting set back but it was the right decision for my family. I look back on it now and I have no regrets with that. But in the moment, you're right, Carol. You wonder if you're missing out or getting set back. And those were difficult feelings to have at the time. And Stephen, with you, here you are, new dad, family, your wife and you have gone through this pregnancy. Did you find that friendships changed because Stephen Jr. or Duce, for the first couple of years, you really couldn't connect? You were always worried about him. How did that impact your relationships? Absolutely. The thing that I was not prepared for was how people thought that this liver transplant was an isolated incident. It's an isolated thing, an operation. So once you stick the organ in and it's transplanted in a couple of months afterwards, there's no more issues. Life goes back to normal. And so I didn't realize that transplantation is a lifelong endeavor. And that's what my friends didn't realize. And so I had friends that were, they were absolutely by my side during those crucial initial days and weeks and months and even year or so. And then they were like, hey, why can't you come out and do this? Why can't you go out and do that? Why don't you hang out with us more? You should do this. And I had to kind of explain to them that things have changed. So when we go to a birthday party, this is well before COVID, hand hygiene was a huge thing for my family. Steve, when you come in from school, wash your hands immediately because that's what we have to do to protect him. And oh, you can't eat this. So Stephen's condition that caused his liver transplant is called galactosemia. And what that means is that his body can't break down galactose found in human and animal milk. So when we go to a birthday party and you have pizza and ice cream, he can't eat. And so there was a difference there of telling my friends, hey, I'm not trying to be mean. I'm not trying to show in your party, but I'm going to feed my son before. And then the other part was to have them understand that I don't want you to have to feel like you have to stop your plans because we're coming. Because what I find is sometimes they don't want to invite you. And that's something that was something we had to work with friends and explain to them that my son is normal. He can come to your party. He can do these types of things. We will take care of him. But it was hard for me to get my friends to understand that my life is different. And while my child is very normal in my eyes, he still has chronic conditions. He takes anti-rejection medicine twice a day, every 12 hours on those 12 hour marches, every single day and we'll do the rest of his life. So my child is different and trying to get them to understand that. You know, one of the things that I had to contend within the military was that my career changed. So the military, we generally do not like to have people stay in the same place for longer than two to three years. Well, we have this thing called an exceptional family member program where the military does take into account the special needs that our families have across the services. And so my assignment team said, hey, we really want you to go to another place outside of the DC metro area. And I had to push back and said, I really don't want to do that because there's continuity of care. There are things that are set up for my son. So not only did it change with my friends and having to get them to understand, here's what my life means now. It also was an educational part for my career to let them know that there are things that I have to do here. And I'm actually coming to this crossroads really soon with do you want to continue in military service where they may send me to another place that's outside of this DC area, or do you want to retire? And it's scary. It is absolutely scary. But when the time comes and I will absolutely make the right decision, I know that I will have educated the military more on what this EFMP program means. And they do the right thing for my son. But it is absolutely an educational part, not just on a personal level, but also on a professional level. So I want to close up with two questions before we open it for Q&A. And the first one is briefly tell me in the audience what you've done to care for yourself. Like what are those little tips or what did you find they figure out you needed to do to keep yourself sane, healthy when you're a caregiver? Sometimes half the day, all the day, again, days, weeks, months, years. So Lissa, I want to start with you. Sure, I think when being a caregiver at first, and learning what that meant for my father and I, we are so proud of the efforts that we made for our loved ones. And we wanted to be there every single minute. I'm sure as Theresa and Steven have felt as well and the stories they shared too. You want to just be there when anything could come out at any moment. And you just want to be by the bedside. You want to be with them at home, wherever they may be. And I think the evolution of that was learning of the burnout that can happen and feeling the effects of the burnout. And my coping ways I think we're just learning to communicate to my support group, my family, my friends, what was helpful for me. Sometimes I took time for myself to do something that I would consider normal that maybe I wasn't doing every day. Grabbing my favorite latte, just like walking to get a coffee that was like extraordinary, like a magical normal moment or blow-drying my hair, which I like probably stopped doing. I would just stop and say, oh, this feels really nice. But then also communicating to my friends. I think my best support group members would ask me, what do you need for it? Like do you want to vent and talk? Do you want to laugh? Like what is best? And I think being able to communicate. All right, I would love to have a lunch date where we just talk about something silly or I would like to really have a personal moment in the backyard where we, I would like to share what's going on with the care of my loved one. And so that really helped me in asking for help, learning to ask people, hey, actually my brother probably doesn't want to see me every day. Maybe he would like to see someone else. Would you like to step in and spend half a day with my brother or my mom and have that quality time with them? And that would essentially also give me a moment to step away. And so those are the types of decisions I started to evolve into, but it took time to get there. Risa, what about you? So some of the things that I do are the same as Alyssa, the connection with friends and family. And I found especially this last time we were in the hospital, while I was in there, it was over 30 days and there was a lot of texting going on with people because that was the easiest thing to do because of all the isolation that you're in there. And one of the doctors came in and said to me, are you staying connected to other people? And I said, yes, I said I'm texting. And she said, no, she said, you need to face time or you need to call people. And I was stunned and I thought, this is what they're learning, how you need to take care of yourself and stay connected in the hospital because they're in there with all these patients who are so ill and can't have visitors because of COVID at this point. So that helped me expand how I was keeping in touch and keeping myself going. I did some, I like to do some meditation. I like to take a walk, just getting outside, being out in the fresh air. As you said, maybe I treated myself to a latte in the hospital also. So just little things that you don't think about all the time, but really for me, it is a lot of personal connection or just sitting down and being able to read a page and be accountable or color a picture or lay down and get to take a nap. If you're able to have the time to be able to take a nap during the day and just do something that helps to rejuvenate you because I do find the better I take care of myself, the better I am for the people I take care of. And it takes a while to realize that and sometimes you think you're doing great, but really your gas tank is pretty empty. And once you fill that up, you can come back with a renewed joy and a renewed caring that you don't have when it starts to get low. If I'm honest with myself and if you can really be honest with yourself, you can look back and objectively say, gee, it's much better here than it is here. So Stephen, I'm gonna start with our last question with you. What has been, sometimes we always think the glass is half empty, but there are special moments or great things about being the caregiver. Tell me, you know, share just what are those positives or whatever you wanna share that has been a benefit of being a caregiver. You know, I think out of Stephen's pain, I've found some purpose. You know, I oftentimes say when your vocation, what you're paid to do, and your application, what you love to do intersect, you find purpose and happiness. And so out of Stephen's pain, I found this new passion and purpose for my life post-military career that, you know, I'm excited. I've just gotten my master's degree in clinical quality safety and leadership. As a matter of fact, my degree frame is in and I can pick it up today. So that kind of passion happened because of my son. And what I found is that I look forward to helping patients to find their voice, to know they have a voice and really transforming how we deliver care moving forward, how we can take the things that I've learned in 20 years of military service in this higher reliability organization called the military and bring that to bear in medicine. That's one of the most, you know, gratifying things that I've learned in this whole experience. The other thing that, and I wanna talk really quickly on what you said from the last question and I would be very brief, there's three things that I do because I think prescriptions are important. One is I talk to people. And so I've done that with, you know, these groups that I'm in, these advisory councils and just talking to other people that have shared experiences. Number two is the right. And so what I've learned is that sometimes you have to unplug to recharge. And the last thing I do is I ride. So I'm a Peloton fan. I've got a tribe of people that if you look up hashtag United for Safe Care, we ride and that's what helps me. So those are some positive things that I've gotten out of this very traumatic experience, but it's given me purpose and it's given me a renewed sense of life. Thanks, Steven. Alyssa. Thank you for sharing, Steven. That's fantastic. Congratulations on your degree as well. Yeah, for me, I guess it's, there's a personal benefit, career benefits similar to Steven and my new career path that I have, but also some skills that I gained. So maybe I'll start with the skills I gained. You know, I'd say most of my life before caregiving was not good at making decisions, not good in urgency, emergencies. Now I think I was in so many of those scenarios that I feel more comfortable when an urgent situation comes up. I know how to navigate just what is that mental process? What are things to think about? Or I can prioritize and realize, all right, maybe something that I thought was so stressful in the past, I can think about it and reframe it, be less stressed, know that there are better days to come. So I think that's just a skill set mentality. For my career, I studied finance and I started working for a pharmaceutical company in finance, but found I really was good at project management. So I joined medical affairs and now I'm a little bit closer to supporting the medical affairs side of a business and I'm gonna be evolving in that space with a new role soon. So I found that I can stay connected to supporting oncology through my work and my school set and that's really exciting for me. So that's great. And then the last part was personally, benefits for me, a caregiver that I look back on. Some of my greatest memories were also when I was caregiving for my brother and my mom. There were times where there were such funny moments that I don't know how they were able to be like hearted through difficult times, but I look back on those and I laugh, cry, laugh, right? There were moments of joy and difficult times. And because I was a caregiver with my dad and we could all be together, we have those memories. And Teresa, I'll end it with you. Well, I have to agree with Stephen and Alisa that you do become closer to the person you're taking care of I think and you learn a lot about the world about you. I found that for Jack and I, we built a trust. So there's a big trust there because you're making so many decisions and so many things are so important. And then I also found that I got closer to my family and my husband's family. This last hospitalization, they were gonna set up making meals for Jack and he couldn't eat at the time. And when I told my sister-in-law, she goes, no, we're talking about you. We wanna cook for you and bring it to you. And I was like, wow, that's really amazing and great, but it's hard to ask for that on your own. It can be hard to ask for that help. And my family is always there as the backup or the go-to or the talk to and my friends have been incredible. I think there's like a deeper, richer side to the friendship where you can talk about things. As Alyssa said, what kind of, what do you want today? Do you want fun? Do you want sad? Do you want serious? Do you want nothing? So that's been extremely helpful. And the fact that sometimes they'll push, well, this is what we wanna do for you. So when do you want it? We're not gonna take no for an answer. We think you need it. We're gonna do this. So let us know when or where, but we won't take no for an answer. And sometimes that's absolutely perfect and you don't realize what you need, but they may be realizing what you need. And also through, I have to say, the PMSF family, I have met the most wonderful group of people. And we always say, my friend here, Carol always said, it's a group that we don't necessarily wanna belong to, but we're here. And so we have met wonderful people who we've grown to know and love and have just, we've supported each other through so many things. And it's just such a rich, rich relationship to be able to do that. And we're here for others. Great way to end it, Teresa. So what we're gonna do is we wanna open it up because we know many people that are watching this right now are caregivers as well and have questions. So there is one last slide and it's just some resources. We felt it was really important to make sure that people know there are resources out there. And these are well-validated resources from the NIH, Mayo Clinic, Harvard, on how to take care of yourself. And they're simple tips that I think sometimes we just forget because we're so overwhelmed as caregivers. So Sarah, I'm gonna turn it to you because I know you've been monitoring the Q&A and chat. Are there questions out there that people have that the panel can answer? Of course, yeah. It looks like we have three questions that were submitted and it's actually one question for each of you. The first one is for Alyssa. The attendee asked, how has this experience changed your friend's thoughts about the culture of having a role in patient safety? Is there any impact on your personal life? Yes, thank you for the question. Masiya, I appreciate it. I see your question in the chat here. And yeah, how has it impacted my personal life? I think I've been able to bring everyone being part of this panel. Thank you for inviting Isera to give some voice to this, but I would say through social media, through interactions and in person when that was something that we did, I do bring up what my experience is like and I don't pretend that it didn't happen because it's something a lot of people in my life don't know about. So I think as far as like change in friendships, people are really supportive. They are comfortable asking me now about my experience. I'm more comfortable talking about it and bringing some voice and attention to what this role is to at least the people in my life and my network and group of professional and personal friends, I think. That's something that has changed over time. At first, I wasn't very comfortable talking about it. Now I am. So that, and I think also just recognizing when people are in a similar scenario to that I was, I now know how to respond to that. I know maybe what could be helpful for them depending on what they're going through. So that has changed my relationship with friends and the culture around me. Great. Thanks, Alyssa. And the next question is for Steven. So the question is, how did you find work in Caregivian, change the culture of your work community? Yeah, great question. And I'll tell you the first thing that it caused my work community to take a step back because oftentimes in those are, we're very hard charging go, go, go, go. And what I found is that I had leadership that was very empathetic to what was going on. And so when I told them Steven's story and helped them to understand that this was not an isolated incident, one and done, they were very open to allowing me to have that space to be an effective caregiver for my son. So that meant, hey, if I've got to leave work in the middle of the day to take him to an appointment because that was the only time that we could get it done, they're okay with that. But it took a lot of communication between me and my leadership team to understand what was going on. That last little vignette, I remember when we initially had our transplant, we were transported from Langley, Virginia where I was stationed to Georgetown Hospital up in DC. And my boss came to my house and packed up clothes and drove up to DC with bags in hand to give to us. And so it was that kind of just understanding that helped them to realize what we're going through. The second part of that is from an institutional standpoint in a sense that my advocacy through the patient and family advisory councils that I've sat on and really pushing at the Defense Health Agency to really collectively look at how we have patients to get a voice. They've taken those things into heart and we're making positive changes so that institutionally, we recognize when we have caregivers that we have to make some special exceptions so they're able to do things for their family as well as continue to do their job. So it was a hard mix, but the mix was made easier or transitions made easier because of communication. Great, thank you, Steven. And then the last question is for Teresa. The question is, did you think of writing your guidelines of how to take care of your patients as you care for your three people in your family? And I assume that is related to your career in nursing. Can you read that again? I'm sorry, I couldn't hear. Yeah, did you think of writing guidelines of how to take care of your patients as you care for the three people in your family? Actually, I hate to say this. I'm not sure what that means if you can. That's okay. Makaya, I think you had submitted that question. If you have any additional clarifying questions that you'd like to pop into the chat, that would be greatly appreciated. And in the meantime, we can definitely take your question offline and ensure that all of our panelists answer them appropriately. So Teresa, I almost wonder if she's sort of saying as a nurse, you've done this and now you've done it for several people. Like, what would be those suggestions? Here's my maybe top five things I would suggest caregivers do. Maybe it's like, you have a tracking list of meds. I don't know. I'm trying to think of, you know, to decipher. Well, for that, I guess, is she on? I find that that's what she's referring to. So I guess one of the things is advanced preparation, if you can. So questions that you have that you need answered. Yes, some medications, a medication list that you would always have with you. The list of what your diagnoses are and preparing, I know they start preparing for the end at the beginning, whether it's discharge or whether it's the end of the visit and what comes next or whatever. So having people that you know are dependable that may help you and being able to ask those people for specific things. I know when I came home from the hospital the first time when Jack had his injury, I'm a nurse. I thought I was all organized. We had had the house, different things fixed up. The first, by the first night, I had everything strewn around the floor and medications everywhere. I couldn't find anything. And I'm thinking, how am I ever gonna do this? So the next day I was on the phone with resources, helping me, family members, et cetera. But having some of those people and having some things prepared ahead of time and the person that you're with, talking to them and seeing what do they want you to do? Do they want you to back off today and they wanna take front and center? Do they want you to take front and center? Do they need you to ask the questions? Do they wanna ask and have you clarify? Do they want you to be there? Do they not want you to be there? So I think there's that piece too, which is really important and respecting that person and that they really are front and center. Thank you. So Sarah, I'll let you wrap it up because we were coming to the top of the hour. Yeah, so thank you all so much for sharing such powerful stories. I know that Carol, you briefly went through this, but for those of you that are looking at my screen, Carol did provide a few really useful resources for family caregivers. We will be uploading this PDF version of our PowerPoint presentation on our website. So I would really encourage you all to take a look. Obviously we've highlighted a few main points for some of these resources, but there is a lot of information on the links. So I would again encourage you all to take a look. But I know we have just a few minutes, but again, thank you all so much. We have a lot of really moving things in the chat. I know that there are a few people that have lost children themselves at a young age to pediatric cancer, for example. And I will just echo all of these stories, really speak volume. So thank you again, very brave of you all to share your stories with us. And we hope that this is a really helpful narrative to push forward while you do what we do here at the Foundation. So thank you again.