Managing the Challenges of Caregiving after Transplant

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Managing the Challenges of Caregiving after Transplant

Sunday, May 1, 2022

Presenter: Kate Zoll MSW, LCSW, Colorado Blood Cancer Institute, part of the Sarah Cannon Cancer Institute at Presbyterian/St. Luke’s Medical Center

Presentation is 44 minutes long with 15 minutes of Q & A.

Summary: Caregivers for stem cell transplant recipients deal with a lot of responsibility and uncertainty. Many find their role very stressful and burnout is common. Practicing self-care helps caregivers maintain both their physical and emotional health.

Many thanks to Takeda Pharmaceutical Company whose support, in part, made this presentation possible.

Highlights:

• Approaching caregiving as “care-partnering” can define the relationship between caregiver and patient in a more positive way.
• Caregivers have a much higher risk of depression than the general population because self-care often suffers when caring for others. Burnout is a serious problem that affects caregivers mentally, emotionally and physically.
• Practicing self-care is essential to maintain a caregiver’s physical and emotional health. It also helps ensure that the caregiver can continue providing good quality care for the patient.

Key Points:

(05:53): Once the patient leaves the hospital, the caregiver is the eyes and ears of the medical team.

(12:43): It’s common for caregivers to experience a wide range of emotions, both positive and negative.

(14:48): Psychosocial distress is common among caregivers and can be disabling.

(18:51): When a caregiver experiences burnout, the patient is also affected.

(26:35): Practicing self-care is important for effective caregiving. Most barriers to self-care are in our heads.

(27:50): Building your own support community is beneficial for caregivers.

(30:30): Self-compassion is an important component of self-care.

(32:06): Mindfulness can create a balanced approach to negative emotions.

(39:11): Setting boundaries or limits and establishing routines are part of effective caregiving.

(41:05): Caregiving can last for many years, a few weeks or months. Reflecting on and finding meaning in the experience can help one cope.

Transcript of Presentation:

(00:01): [Michelle Kosik] Hello, my name is Michelle Kosik. Welcome to the workshop, Managing the Challenges of Caregiving after Transplant. Thank you to Takeda Pharmaceutical Company whose support helped make this workshop possible.

(00:16): Introduction of Speaker. It is my extreme pleasure to introduce today's speaker Kate Zoll. Kate Zoll is a licensed clinical social worker and a psychosocial oncology supervisor for the Colorado Blood Cancer Institute in Denver, Colorado. She is passionate about advocating for each patient's and caregiver's unique needs by helping them identify community resources, navigating cultural or financial issues and supporting them through care transitions. She is experienced helping patients and caregivers cope with the uncertainty that often comes with a cancer diagnosis and is skilled at collaborating with patients and their loved ones as they make decisions around their care. Please welcome Kate Zoll.

(01:05): [Kate Zoll] Good morning, everyone. Thank you so much, Michelle. And thank you to the team at BMT InfoNet for this opportunity and to everyone for taking time out of their Sunday to attend my session.

So, if you're listening to this, you're likely juggling a lot. I commend you on choosing to take an hour to hopefully learn a little bit more about how to manage this challenging role you're in. I played around with some stock photos for this title slide of my presentation. And then I thought of this recent picture I took on my phone during the last few miles of my commute home after a long day at work. I am so fortunate to have found this career that gave my family and I the opportunity to move to beautiful Golden, Colorado. However, just like caregiving, the work has its challenges too.

(01:58): I have a sign in my office that says the best view comes after the hardest climb. I felt that this particularly challenging day, this beautiful view gave me a sense of peace and calm. My wish for each one of you is that your caregiving experience leads you, and the person you're caring for, to a positive and potentially beautiful outcome.

(02:23): Caregiving is part of the human experience. Another quote I'd like to share is one from former first lady, Rosalynn Carter, who's been a huge champion for addressing issues related to caregiving in America. There are four kinds of people, those who will become caregivers, those who are caregivers, those who were caregivers, and those who will need caregiving themselves.

Take a few seconds to think about yourself as a caregiver, think about the person you're currently caring for and what they are going through, think about what aspect of this role gives you fulfillment. What is your greatest challenge? Think about others that you have cared for in the past, maybe a child or maybe you work in a helping profession or as a volunteer. Think about another person that may need your help and support in the future. Has anyone ever taken care of you? If so, what do you think they would say? We must keep in mind that caregiving is a part of the human experience.

(03:30): Objectives of this Talk.  So, with that said, my objective today is to talk a little bit about the unique role of a stem cell transplant caregiver. I'll discuss how this role, at times, can lead to distress and then equip you with some skills, strategies and resources to hopefully empower you as you continue on your caregiving journey.

(03:50): Caregiving for a transplant recipient is best viewed as care-partnering. One thing I want to mention that a former colleague shared with me is the concept of care partnering. I believe this term's been introduced in other transplant centers, and I think it applies in many cases. Obviously there are situations when people are critically ill or may have advanced dementia where care caregiver is doing just that, giving care. But for the purposes of the population that we are talking about, I do like this distinction.

Words are impactful. The difference in how a relationship is defined can affect how roles are viewed as well as a sense of agency that an individual feels. Care partner evokes a sense of cooperation and common goals. There's a mutual sense of purpose as each person in the partnership has a role in the care and support provided. It is important to feel your loved one is just as much a part of the partnership as you are. The dynamic can feel more positive when you feel that you are working with someone, not for them.

(04:57): I met with a patient and her close friend who acted as her care-partner recently as she was in our clinics for her final post-transplant exit interview, or exit appointment, before going back to her home in New Mexico. I shared this word care-partner with them and how much their partnership really inspired me. They both just lit up. They spoke to how much they loved what this word choice describes.

(05:25): I also want to recognize that in many cases, the term caregiver or even care-partner for that matter, may seem to diminish that primary relationship you have, whether it's spouse, sibling, child, close friend. Please know that's why I will go back to using the term caregiver for the purposes of this presentation. I do also recognize the importance of the words and labels we choose.

(05:53): Once patients leave the hospital, caregivers are the eyes and ears of the medical team. So you will all know what a caregiver is. I just want to point out a couple important things for those of us who work in cancer care and with stem cell transplant patients that we recognize that you are an extension of us. We need you. When our patients are not in the hospital or in our clinic, you're our eyes and ears.

(06:17): Over 50 million people are unpaid caregivers in the United States. So just a few little facts from a very broad overview of caregiving in the United States. Nearly one in five people are providing unpaid care to an adult with health or functional needs. This is about 53 million people. Caregivers are increasingly caring for more than one person up from 18% to 24%. And this date is a couple years old. So it's probably even higher.

(06:47): Most caregivers are part of the “sandwich generation” caring for those both older and younger than them. The majority of caregivers are between ages 50 and 64. So to that point about age, I just want to point out a term you may have heard of called the sandwich generation. This is a larger group now with the baby boomer population aging. Individuals who provide care for a parent while also raising their own children have come to the be known as the sandwich generation. Many members of this group also have full-time jobs and may find it necessary to have to cut back work hours or even leave their jobs in order to attend to everyone's needs. Obviously, this adds a lot of stress and financial difficulties. 15% of these people provide support financially to both parents and a child or children, which can quickly drain resources.

(07:38): Dividing time between children and parents may also leave individuals with little or no time for their spouse, their partner or their own needs. Members of this group may be more likely to become isolated than caregivers who do not have children at home, as they have even less time to seek out relationships and social connections. I am sure this applies to some members of this audience and just want you to know that you are not alone.

(08:06): So in the interest of time, I will not be doing a super deep dive into all of the requirements of being a stem cell transplant caregiver. But I do want to point out some of what it makes it unique.

(08:19): Caring for stem cell transplant recipients involves maintaining a sterile, safe living environment, providing physical care, and tracking medications and appointments. So environment is a big deal when it comes to our patients. They are at extremely high risk of infection and they lack the strong immune system to fight one. Keeping a sterile and safe living environment as well as taking on cooking and grocery shopping are all very important.

(08:38): Physical care. Again, you are our eyes and ears. It is important you're recording and reporting new symptoms or changes in the patient. Monitoring and recording meds, picking up those meds and other medical supplies as well as managing the care of the patient's line.

(08:58): Tracking is also important. In addition to tracking medications, we rely on caregivers to keep track of all those many, many follow up appointments and to make sure there's reliable transportation to and from.

(09:14): Financial tracking can also sometimes be taken on by the caregiver. I've done a different presentation in the past on managing financial distress when it comes to a diagnosis or a blood cancer or going to stem cell transplant. And I often encourage that if there is someone else who is not the primary caregiver, who would be willing to take this on, that is ideal. In a perfect world, our insurance kicks in and just covers everything except for our deductible. But sadly, I think we all know this is not the case. Without going off on a tangent, I just want to encourage you to make sure you are working with your program's financial counselors, resource coordinators and social workers to make sure you're getting access to those financial resources that are out there.

(10:05): Emotional support. It's one thing to be physically present, but often caregivers are also that emotional support for patients. This is something else I'll talk about later on. So just know you cannot take this on alone. You can assist with finding ways for the patient to cope and helping to find other people they can connect to.

(10:28): Caregivers that come to appointments with information, questions and a willingness to help with decision making are vitally important.  And finally, advocacy is so important. For those of you old enough to remember Charlie Brown, his famous teacher, all you ever heard was her muffled rah, rah, rah sound when she spoke. I'll never forget being a patient myself and going to an early oncology appointment. And basically that teacher sound could have also been played instead of the doctor giving me his precious time and knowledge. It can be so overwhelming when you're the patient and your system's out of whack and maybe filled with foreign substances. Caregivers that come to appointments with information, questions and a willingness to help with decision making are vitally important.

(11:13): The job of caregiving is challenging and sometimes overwhelming. So I just named a lot of responsibilities. Sounds easy, right, wrong. Many of you are likely joining today because this role is so challenging and sometimes overwhelming. And in many, many cases, you've had to put your work, hobbies, other loved ones and yourself on the back burner to take this role on. Caregiving carries a significant weight and impacts all areas of our lives, physical, mental, emotional, financial, even spiritual. I am certainly no expert on spiritual suffering, but I do know that questions and fears about life and meaning, forgiveness, and perhaps a relationship with God can come up in times of immense stress and illness.

(12:02): Caregivers have a much higher risk of depression than the general population because self-care often suffers when caring for others. When it comes to caregiving, there is three and a half times more risk for depression several years outside of transplant among spouses of stem cell transplant recipients. There can be a lot of isolation in struggling to know how much to push either yourself or the person you're taking care of. Caregivers tend to put themselves last, just because sometimes there is no choice. There's no choice but to focus on all of the responsibility, and it's easy to feel there is no room for self-care. Not processing feelings or attending to self needs leads to burnouts, which we will discuss later in this presentation.

(12:43): Caregivers often experience a wide range of emotions including sadness, anger, grief, guilt, and loneliness. I want to acknowledge it is common to feel a wide range of emotions. They're never all positive or all negative. They vary day to day, and sometimes, honestly, moment by moment, depending on what's going on. It's important to try to understand your feelings. You are experiencing a lot of them and there is no right or wrong way to feel. You need to give yourself permission to feel how you're feeling, try to embrace it even when it's uncomfortable.

(13:16): Some feelings that may come and go are sadness. It's okay to feel sad at times. This is heavy stuff, but if it lasts for more than two weeks and it's keeping you from being able to be effective and do what you need to do, you need to seek help and talk to your doctor.

(13:35): Angry. You may be angry at yourself, maybe at other family members, because you feel they're not really stepping up to the plate. You may even get angry at the person you're caring for. Just know that anger usually comes from fear, panic or stress. Try to look at what's beneath that anger and what is in your control.

(13:58): Grief. You may be grieving. You may be feeling a loss of what you value most. This may be your loved one's health and maybe the loss of that day-to-day life that you had before the diagnosis was made. Let yourself grieve. It's okay.

(14:18): Guilt is a common feeling as well. You may think you're not doing enough. And it's common that you may even feel guilty that you are healthy.

(14:30): Loneliness is also common, even though you might be surrounded by a lot of people and still may feel that nobody understands what you're going through. You may be spending less time with others, which in light of the recent pandemic, this is highly probable.

(14:48): Psychosocial distress is common among caregivers and can be disabling. So these emotions I mentioned on a previous slide are tied to the term psychosocial distress. This has been formally defined as a multifactorial unpleasant experience of a psychological, social, spiritual, and or physical nature that may interfere with one's ability to cope effectively with caring for someone. Distress extends along a long continuum. It can range from common, normal feelings of vulnerability, sadness, and fear to problems that can be downright disabling: depression, anxiety, panic, social isolation and even spiritual crisis.

(15:32): Distress is a common experience among caregivers. Distress can look like anything on this slide. Anxiety, depression, anger can lead to physical issues and changes in your social roles, and especially it can affect that relationship directly with the person you're caring for.

(15:56): Various factors can come into play at once causing an increase in distress. As social workers, we recognize the importance of addressing distress and can assist you and your family with looking at what areas of distress you're experiencing and how to address them.

(16:14): Caregivers deal with a lot of responsibility and challenges plus uncertainty. We ask a lot of our caregivers, and if you don't have a medical background, you may frequently find yourself questioning whether you're doing things the right way, or you might be put in a role where you have to enforce a rule that is frustrating for the patient. That path of least resistance can seem so inviting. Trust me, I have children. I am familiar with it. Sometimes we want to give in because it would be so much easier to avoid a battle. But these rules you're enforcing are crucial. This may sound harsh, but they can be truly life and death decisions. Of course, that's distressing.

(17:02): In a 2019 study, a majority of caregivers for transplant recipients were still providing care up to six years after transplant. So in 2019, there was a study done that surveyed caregivers of stem cell transplant patients, which found that 68% of them were still providing care to the transplant recipients six years post-transplant. So while it would be nice to say that a caregiver can just go back to life as usual, for example - maybe after that 100 day requirement from getting cells - this is just often not the reality with the complex diseases we treat. GVHD and other complications can lead to a patient needing assistance for a much longer period of time, which in turn increases the risk for what we call burnout.

(17:45): Burnout is a serious problem that affects caregivers mentally, emotionally and physically. We've all probably casually thrown out this term, burnout, to describe how we feel about something. But for a caregiver, burnout is serious and it's not just something that can affect you mentally and emotionally, but physically as well. I'm sure everyone has at some point or another, been able to link a physical symptom to stress, whether it's a migraine, irritable bowel syndrome, cold sores, those are basically mine. Also, there's just absolutely a mind-body connection and repercussions when our mind is in a state of burnout.

(18:25): Burnout occurs for numerous possible reasons. Maybe there was a lack of understanding of this role that you got into. There could be communication issues between you and the patient you're caring for or issues with delegating tasks. And maybe you're feeling that self-sacrificing need to do everything, maybe it just feels thankless and downright not rewarding.

(18:51): Sadly it's no surprise, the patient is also impacted when a caregiver exhibits traits of being burnt out. There's a large body of evidence that suggests that caregivers and their patients' psychological functioning are linked such that when caregivers become depressed, patients are likely to experience similar depressive symptoms and vice versa. This reciprocity is often termed interdependence.

(19:25): Burnout is a rock bottom “I just can’t take it anymore” feeling that can trigger unhealthy behaviors among caregivers. I talked about some key emotions earlier, and those are common and they're expected to be experienced from time to time. Burnout is different. This is more of that rock bottom feeling, this "I just can't take this anymore,” where like the lady in the picture, pulling your hair out seems really tempting.

(19:46): Symptoms of burnout include anger, social withdrawal, anxiety, depression, no joy in life and exhaustion. Some signs that you've hit that burnout diagnosis might be anger, maybe just in general, or maybe towards the person you're caring for, possibly in the form of outburst, social withdrawal, anxiety about the responsibility, deep crippling depression, maybe you can't even remember the last time you really laughed or felt joy, complete exhaustion. Sometimes letting go of basic hygiene happens. Why bother even shower? Do my hair today? Just going to be doing the same thing I did yesterday. Trouble with sleep happens, nightmares sometimes, inability to concentrate or finish one task, and finally engaging in unhealthy behaviors, such as binge eating or drinking, smoking, abusing meds or drugs.

So hopefully none of you listening are hearing this burnout description and going yeah, that's me. Ideally, we're still at a point where we can put these prevention tips into place. However, if it's too late, please seek help. This is for you, the person you're caring for and everyone else in your circle. Please call your doctor or talk to the social worker or psychologist affiliated with your cancer center. We are here for you just as much as we are for our patients. In fact, I can think of many instances where I am much more involved with or connected to the caregiver for support than the patient. And that is absolutely fine. Supporting you is supporting our patient.

(21:33): Preventing burnout is better than treating it later. Obviously, the best approach to burnout is just to prevent it all together. And that's possible if we take a healthy and well supported approach to this role. I'm going to go deeper into each one of these bullet points on the following slides. I do want to point out my little yoga picture here, as you'll see yoga as a self-care strategy coming up. And I just love the simplicity of this pose. You may concern your loved one when they find you on the floor like that,but let them know you are calming your mind. There's lots of great yoga apps that you can put on your phone for just a five-minute stretching and calming break.

(22:13): A team approach for caregiving allows for a division of labor. So a team approach when possible is absolutely ideal. I realize some of you travel long distances and have to stay in local housing for a period of time post-transplant. And therefore it may seem difficult to take a team approach. But there are things that can be taken off your plate from a distance.

(22:30): For example, have someone else take on managing a webpage that provides family and friends with updates on how your loved one is doing. CaringBridge is an example of a site that offers a free webpage, where you can provide updates in a patient care journal, you can share pictures and invite visitors to write messages in a guest book. This relieves that pressure for you or the patient to give that same update over and over to multiple people.

(23:01): Resources are available to track appointments, have meals delivered, manage bills, and provide emotional support. Mylifeline.org allows members to create a free website to keep track of appointments, find information and post requests for help. Lotsahelpinghands.com is another resource that helps create a care community where people can coordinate sign up for meal delivery and other assistance. I think with Lotsa Helping Hands, you may find it's also called My Cancer Circle. They partnered with Cancer Care to modify this to focus specifically on the cancer community. So these are amazing resources that often take that ask out of getting help. As a mom of teenagers, I sometimes curse this age of technology and this constant need for connection, but these are actually examples of technology really making a difference in sharing information and coordinating care.

(23:54): Another task can be to help manage bills that come in, medical or household bills, asking someone to maintain a notebook or a spreadsheet and keep track of who was spoken to when ironing out questions and when bills were paid. That can be really helpful.

(24:12): Emotional support ideally comes in a team approach as well. Make sure there are others are checking in. People are often busy and sometimes need just a friendly little kick to remind them to check in if they're not the day-to-day caregiver. It can be hard to ask.

(24:31): I recently sat down with a caregiver who's a sister of a patient of mine. And the patient's been hospitalized for a really long time and I said, "Who else can I call? This cannot fall all on you. Give me names and numbers." So I left messages for this person's pastor and close friend and said, "Hey, he needs you. Please check in." And don't forget you, who's on your team that you can talk to regularly to process your feelings, frustrations, winds, losses, don't bottle it up. Remember we are preventing burnout.

(25:08): Self-care is important as in the airline instruction to secure your own oxygen mask before assisting others. Self-care, that term. And here comes the slightly overused airplane analogy, but it fits. So here goes. Most of us have flown on a plane and we've heard the safety instructions repeated to us on each flight. As we know, the first rule when they talk about the oxygen mask that will drop down in front of us in an emergency is to put on your own oxygen mask before you assist anyone else. Caregiving for yourself is one of the most important and often most forgotten things that you can do as a caregiver. When your needs are met, then you are more able to meet the needs of the person you're caring for.

(25:49): A self-care checklist can help assess how well a caregiver is doing and identify unmet needs.  The Seattle Cancer Care Alliance has a nice little quiz about self-care where they ask you to answer true or false statements. So maybe you can answer these in your head. I feel rested and calm and getting enough sleep. I have someone to talk to. I'm eating right. I'm exercising regularly. If you answered false to a couple of them or maybe even all of them, then you need to listen up on the topic of self-care. It's a big topic. And it's one that you don't have to be a caregiver to need to prioritize. However, it's even more crucial for caregivers to make a concerted effort to practice at least some form of care daily, self-care, that is.

(26:35): Most barriers to self-care are in our heads. We may not be able to change events, but we can change our reaction to them. I believe most of the barriers to taking care of ourselves are in our heads. It can be easy to get caught up in the stress of your role and create this inner dialogue that says, 'I just don't have time, things are way too stressful, this is never going to get better, so why bother?' And I can be guilty of this. You cannot change the diagnosis and complications your loved ones may facing, but you can change how you interpret and respond to these events.

(27:05): Recognizing and accepting what we cannot change is a healthy response. First, you acknowledge and accept the negative feelings and then you take action to evaluate what is in your control. There's a line in that famous serenity prayer that's often a go to in my own head, sometimes even in my staff meetings. We must seek to accept the things we cannot change, have courage to change the things we can change and have the wisdom to know the difference. When you take care of yourself, you're able to keep things in perspective, maintain a hopeful outlook and avoid seeing a crisis as something insurmountable. Remember that view on the top of the mountain, we are more likely to appreciate it when we care for ourselves.

(27:50): Building your own support community is beneficial for caregivers. That support community I talked about a couple slides ago is tied to your self care goal. When you have this community, you can put aside time to care for yourself. I know it's easier said than done, but it's a must. If you need to ask a professional to get involved, ask your transplant coordinator for tips, your social worker to pick up the phone like I did or a pastor or neighbor that you trust. People inherently want to help others, they want to feel useful. Ask for some ideas for practicing self-care.

(28:21): Exercise, art therapy, yoga, and meditation can all be beneficial for caregivers. According to an article from the American Psychological Association, the link between exercise and mood is pretty strong. Usually within five minutes after moderate exercise, you get a mood enhancement effect. There's also evidence that exercise can help alleviate long term depression. So even a five minute walk or jog is going to make a difference.

(28:44): Arts based strategies can help reduce anxiety and create an environment conducive for healing.

(28:51): During the beginning of the COVID pandemic, when the world was quarantining, I was working in a hospital in Chicago. I had many days that were almost unbearable. I wanted to resort, and sometimes did, to unhealthy coping mechanisms. I then got a paint by number, random, but it was an adult paint by number I found online and it really helped me avoid some of those unhealthy practices. It was a colorful, intricate picture of two elephants that each time I sat down and worked on, I'd get lost in the detail and find myself relaxing and forgetting about the stress of the day.

(29:32): I mentioned yoga apps earlier, and there's also some great options for meditation like Calm and Head Space. And I'm a big reader too. Get lost in a book, go walk in nature. And even writing too. When I had cancer, I chose to write in my own blog with updates. It was a form of therapy for me to write my feelings. And I also found humor would often get me through.

(29:56): Several cancer organizations have peer connect programs that provide caregiver support. So there's a lot of resources for counseling and peer support. And I encourage you to consider that as well. Go beyond the friend or family member and consider engaging with a neutral therapist or someone who's been there as a transplant caregiver. BMT InfoNet has a great directory of mental health providers and they, along with Leukemia and Lymphoma Society, Be The Match, also have peer connection programs. Take the time to check them out. The world's been forced to go virtual, so there's a lot of telehealth options as well.

(30:30): Self-compassion is an important component of self-care. So in addition to self-care, I also want to talk about self-compassion. There's a book that came out over a decade ago by Kristin Neff who shares this concept of being compassionate towards yourself. The subtitle is The Proven Power of Being Kind to Yourself, and I list it in my resources. She talks about self-kindness versus self-judgment. It's being kind and understanding towards ourselves when we suffer or feel inadequate rather than ignoring our pain and being critical of ourselves. Self-compassionate people recognize that being imperfect, failing and experiencing life's difficulties is inevitable. So they're gentle with themselves rather than angry when life falls short.

(31:16): People cannot always be, or get, exactly what they want. When this is denied or fought against, suffering increases in the form of stress and frustration. When we accept this, we treat ourselves with kindness and sympathy.

(31:31): Another aspect is common humanity versus isolation. Frustration at not having things exactly as we want is often accompanied by an irrational sense of isolation as if I were the only person suffering or making mistakes. All of us suffer. The very definition of being human means that one is mortal, vulnerable and imperfect. Self-compassion recognizes that struggling is part of the shared human experience, is not just something that happens to me alone.

(32:06): Mindfulness can create a balanced approach to negative emotions. There's also mindfulness versus over-identification, which requires taking a balanced approach to negative emotions so that feelings aren't suppressed, but they're also not exaggerated. We need to be willing to observe our negative thoughts and emotions with openness, so that they're held in mindful awareness. That's a state when one observes thoughts and feelings as they are without trying to suppress or deny them. We can't ignore our pain and feel compassion for it at the same time.

(32:40): Self-compassion is not self-pity. So self-compassion is not self-pity. Self-pity is more about being immersed in your own problems and forgetting that others have this similar problem. People who are being in self-pity feel that they are the only ones who are suffering. Self-compassion allows one to see the related experiences of self and others without these feelings of isolation and disconnection. Self-pitying individuals often become wrapped up in their own drama and can't step back from the situation and take an objective perspective. So if you take a compassionate approach, you give mental space, that's provided to recognize the broader context of one's experience and to put things into perspective. "Yes, it's very difficult what I'm going through right now, but it's normal and natural for humans to struggle. I'm not alone. "

(33:36): People may be reluctant to be self-compassionate because they're afraid they would let themself just get away with anything. "I'm so stressed, so I'll just binge Netflix and eat a bunch of ice cream." This is self-indulgence not self-compassion. Being compassionate to yourself means that you want to be happy and healthy in the long run. In many cases, giving yourself pleasure may harm well-being while giving yourself health and lasting happiness involves some work, but reward in the long run.

(34:05): And although self-compassion may seem similar to self-esteem, they are different. Self-esteem refers to our sense of self-worth or how much we like ourselves. While a low self-esteem is problematic, often can lead to depression, trying to have a higher self-esteem can also be problematic. Self-esteem is often based on how much we are different from others, how much we stand out or are special. Self-compassion is not based on self-evaluation. People feel compassion for themselves because all humans deserve compassion and understanding, not just because they're pretty or smart, talented, or whatever. This means that with self-compassion, you don't have to feel better than others to feel good about yourself.

(34:49):  Self-compassion brings greater emotional resilience than self-esteem. Research indicates that in comparison to self-esteem, self-compassion is associated with greater emotional resilience and more caring relationship behaviors. So this is a radically new way of relating to ourselves. If this resonates with you, I encourage you go to selfcompassion.org, read more as this is just an overview. There's lots of books and workshops and meditations. So self-compassion as well as communication could be entire presentations.

(35:19): A healthy mindset is self-aware, mindful, authentic, and grounded. Last year, I attended a conference in DC that was centered around communication in oncology. And there was a lot of great takeaways. I want to touch on a few of the concepts that I learned as well as the N-U-R-S-E acronym. So first, there's self-awareness. Making sure you're paying attention to what's going on inside of you, be aware of your strong feelings, distractions, comfort or discomfort, judgments and emotions.

(35:46): Then we want to make sure to be mindful. This is a term that gets thrown out a lot. It's about being present. Try to focus on what is happening in the moment you are in, who is speaking, what are they doing with their hands and expressions. Use posture and breath to refocus on yourself. Practice being fully present with yourself, the person you're caring for and not rehearsing in your head what you're going to say.

(36:12): Be authentic, which makes me jump out of order to response flexibility. This refers to responding in the moment and dropping your agenda.

(36:22): Groundedness is that practice of intentionally slowing yourself down and bringing your presence into the room and out of your head. You want to focus on the sensory experience and feel that physical sense of support from your body, the chair you're sitting in and even the ground you are on.

(36:45): Try to maintain a non-anxious presence, relax, resist that urge to fix everything, check in with your posture and breathing on occasion. Take a deep breath. Remember that interdependence you have with the patient and how you being anxious can be so contagious.

(37:07): Be curious. You don't always have to categorize everything in the moment. Wonder about how others are feeling or what they are thinking.

(37:16): Sustaining compassion is key to quality caregiving. Finally, and most importantly is compassion. When we slow down and focus our communication, we are more likely to ensure that our compassionate nature comes through. Every one of you is compassionate. I'm sure of it. You wouldn't have taken on this role if you weren't. But there are times where fatigue and frustration take over. This may sound crazy, but in your mind, wish the person you're interacting with well. You will notice warmth in your heart as you do this.

(37:45): Don't jump to conclusions. Seek to see the good in people. I know I sometimes get frustrated when an individual's actions or response to something - and it can be easy to jump to a conclusion like, uh, he is nasty or someone didn't raise her with any manners - but when I shift my thinking to maybe they're going through a hard time right now and perhaps understanding that it wasn't personal, when I do that, my negativity and paranoia subside.

(38:16): The NU-R-S-E acronym can build empathy in challenging situations. So then there's the N-U-R-S-E acronym. It's a tool to help with empathy in a tough conversation. So naming. It sounds like you're frustrated. Naming that feeling you're seeing. Understanding and validating someone's emotions. This helps me understand what you are thinking. Respect, recognizing their efforts and what they're going through. I can see you've really been trying. Support. Let them know that they are not alone. I will do my best to make sure to help you with what you need. Exploring and examining strength. Could you say more about what you mean when you say that? So those are just a nice little tool that can come in handy in the work that I do, and maybe could be helpful for you at times.

(39:11): Setting boundaries or limits and establishing routines are part of effective caregiving. So ongoing distress can lead to increased vulnerability and boundaries becoming blurred. A boundary is that border or limit we set in order to protect ourselves. Like I said, they can be blurred in caregiving roles as they change and you may be required to take on more over time. Ongoing distress can impair our judgment and decision making. So it's important to know how to set boundaries. This is not always easy.

(39:37): Some suggestions are to get a calendar or schedule and write down your routine, can help you get a picture of how much time you're spending on various responsibilities and evaluate your bandwidth when you're asked to take on something more. You may find you simply don't have the time and therefore can decline what's being asked of you. Trash that mentality that you must take on everything by yourself. This is simply not possible.

(40:02): In most cases, our patients are candidates to get a transplant because they're robust physically and mentally. If you are being asked to do something that's outside of the expectation of your role and by not doing it, you are in no way harming our patient, then you are allowed to say, no.

Have I mentioned asking help from others? I can't say it enough. Build that community.

(40:24): A caregiving bill of rights reminds caregivers of what they are entitled to in their role. So as I near the end, I do want to share this caregiving bill of rights. This is slimmed down to not have too many words on a slide. And I think there's several versions out there. But I want you to know that you have the right to take care of yourself, to seek help from others, to maintain facets of your life that do not include the person you care for, to get angry or depressed, to reject any attempt to manipulate you, to receive consideration, affection, forgiveness and acceptance, to take pride in what you are accomplishing, to protect your individuality and your right to make a life for yourself.

(41:05): Caregiving can last for many years, few weeks or months. Either way, it's important that when it ends you reflect and refocus. Meaning-making is a process in which a person gains, understands and makes sense of life events and even yourself. We've all been through difficult experiences, things related to grief and loss or some things that have challenged you more than you'd ever imagined. Finding meaning in these experiences can help us cope or understand the bigger picture. Finding meaning or purpose in your caregiving role can decrease distress and lead to better psychological adjustment in the long run.

(41:47): Some people find meaning in giving back through various organizations and opportunities. One way people find meaning is to give back. We often get asked how... Some of our former patients and caregivers, they come back and ask how they can help. If you're interested down the road, I either encourage you to consider BMT InfoNet, LLS or Be The Match connection programs or ask your cancer care if there's any local nonprofits that support our patients. There's also that macro approach to giving back through fundraising and advocacy for change in legislation that impacts our patients.

(42:22): There are many organizations and resources that can help with caregiving challenges. So the next few slides are some resources. I know these slides will be posted so you can go back and refer to them. These are just some of the websites, obviously BMT InfoNet being one of them. Some of them are caregiving specific. This points out some of the ones I mentioned earlier, CaringBridge, Lotsa Helping Hands, where you can share information with your community. Here are a few apps that are out there to help with caregiving. Probably 10 more have come out since I created this. There's always evolving technologies that are being invented. So there's one called cancer buddy that's coming out soon as well.

There are tons of books out there. I have not personally read all of these. I do know the author of The Caregiver's Guidebook, a lovely woman who cared for her husband through a liver transplant who has great tips. And I also put that self-compassion book on here in case anyone's interested in reading further. Finally, if you've gotten into the world of podcasts, here's some series and videos that apply.

(43:41): And that's it. Thank you again for your time. I want to take this opportunity to acknowledge you and all you're doing for your loved ones. And thank you for your partnership on behalf of all the social workers and the transplant teams that we partner with.

(44:00): [Michelle Kosik] Q & A. Wow, what an excellent presentation! Great presentation, Kate Zoll. Very, very informative. Lots of tips. We do have a lot of questions. So we're going to go ahead and take the audience questions now. Our first question is what if you're the only caregiver with very few others to back you up? What could you do to get some extra help?

(44:40): [Kate Zoll] Yeah, that is super tricky. And I always believe that there is community out there. I would definitely encourage you to start with your transplant center and see if they have any ideas of resources out there in your community, because there are volunteer...I mean COVID has changed a lot and certain nonprofits have gone away, but I'm seeing them come back up. It's like Spring, those flowers are coming back up. And I'm starting to see some of these nonprofit organizations come back out and have volunteer programs to help out with that respite that, that caregiver needs and may not feel they have if they don't have a large family or a lot of close relationships. I do always encourage people too, if they're affiliated with any type of faith based community, a church or a synagogue, because there's usually people there that are willing to step up and help. So a lot of times it is community based.

(46:02): Worse comes to worst. There's also paid caregiving, but most people can't afford. It can be very expensive up to $20 to $40 an hour for paid caregiving. So I always try to have that as the last resort when it comes to getting respite as that primary caregiver. So really seek to ask that social worker or the people in your transplant center if they know of any local resources of people willing to step up and lend a hand.

(46:40): [Michelle Kosik] Great response. Our next question is, do you recommend caregivers going to the same therapist as the patient?

(46:51): [Kate Zoll] So it depends on what's going on. In most cases, I think it's beneficial to have your own therapist and a different therapist. So if you're both in therapy, probably ideally you have a separate therapist. However, if a big reason you are in therapy or a hot topic in your therapy session has to do with the dynamics of your relationship, then I think it can be very beneficial to go to some sessions together to really work through with that clinician and get to the bottom of what's going on and how you can better communicate and come up with some strategies to work on that partnership. So it's situational, but in most cases I would say probably go to someone separately and join, if need be, to in a session.

(47:59): [Michelle Kosik] Thanks, Kate. Our next question is how do I make my husband happy with all of the limitations that come after the transplant? We have a hard time doing what used to make us happy, like going hiking, going out for dinners and theater visits and even being intimate due to graft-versus-host of the lungs, eyes, mouth, vagina, frequent infections and extreme fatigue. I use my parents help with our daughter, but my husband feels trapped living so close to them. I adjusted and feel happy, but my husband does not. It's been five years since the first transplant, two years since the second allo transplant.

(48:46): [Kate Zoll] Wow, that is a great question,and thank you for sharing what you're going through. And first I want to commend you because I heard you saying that you have adjusted and it came a long way. So I'm sorry to hear that your husband is struggling. One of the things in that question that really jumped out at me is you asked how do I make my husband happy? And I think one of the first things that we need to recognize is that we are not responsible for someone else's happiness. And that can be something that's hard to swallow, especially in a relationship like a marriage. But he is responsible for finding his happiness. And you can acknowledge and validate his unhappiness. And you need to ask those questions to him as what do you need now? How can I help you through this? Do you want me to just listen to you vent? Or can we work on strategies to get through your unhappiness?

(50:11): Now, I heard you talk about GVHD and how that's changed everything, which it can. And I want to make sure that you are connected to support groups out there, because it's crucial for you to be connecting with people who are going through similar issues with GVHD. BMT InfoNet has a great support group. And talking to other people who are in this similar situation can be really helpful.

(50:47): One thing I learned from a presentation given by our lead chaplain here is three good things. That's a little strategy that might be a tiny little help for your husband is, is thinking of three good three things that happened at the end of every day. Write them down and reflect on why that happened. And that can be just a little helpful exercise. But if you guys have been going through this for a long time again, counseling. This really, really could be beneficial for you guys to do some one-on-one counseling and some individual counseling to really get to the bottom of how you guys can find a new normal. Hopefully that helped. I know that was a long answer.

(51:45): [Michelle Kosik] I think that was excellent, Kate. So just to reiterate, it's bmtinfonet.org. There's a caring connection, which is a peer-to-peer support. You can talk with the trained volunteer survivor or caregiver who's already been through the transplant. So I think having that peer support is just so important. In addition on the bmtinfonet.org, there's a mental health providers directory tab, where you can seek additional support. The next question is how important is it to make time for yourself?

(52:23): [Kate Zoll] Well, hopefully I got that message through loud and clear in my presentation. It is absolutely crucial. I can't stress it enough that you have got to take care. And I know that self-care term can probably cause a lot of eye rolls out there, because it just seems like the impossible dream. I know we've all felt that, with not even being a caregiver, just juggling life, it seems impossible, but we absolutely have to do that. I know that, that oxygen mask analogy is overused, but it really is true. You've got to take care of yourself. And even if it's just a short walk outside, I personally think connecting with nature and getting just fresh air is so amazing to just reset your stress. It's a fact. Caregivers who take care of themselves are better caregivers. I promise you that. And people often view it as being selfish. I'm not sick, so I should be taking care of the person who's sick. My health and my wellness can wait, but it's absolutely not the case. You have to take care of yourself.

(53:57): [Michelle Kosik] Absolutely. Couldn't have said that better. Great response. Our next question is should a caregiver report a health event if the person they're caring for won't? My son had a neurologic event that resolved in a few hours and he didn't tell his doctor.

(54:19): [Kate Zoll] Yes. That would be my gut response to that. Your transplant center should have a nurse coordinator and a physician and a round the clock number to call it. And I want to make sure I understood that the patient, the son refused to call, is that what it was Michelle? He had a neurological event.

(54:48): [Michelle Kosik] Yeah, he did not report. Yeah. He did not report it to his physician because it resolved.

(54:56): [Kate Zoll] No, my gut says that you should report that. This is crucial. This could be something going on. We need to catch things early. So sometimes yeah, it's like tough love. It's like that path of least resistance that I talked about earlier that we can enforce rules and sometimes encourage uncomfortable battles with the person we're caring for, because they're like, just let it go, leave me alone or I'll do this just once. And it can be easy to give in, but you have to understand the severity. And a neurological event to me sounds like something incredibly important to make sure that you're reporting. And you don't have to call 911, you don't have to even talk to the doctor, you should have a nurse coordinator that you call, that you can share. Someone you trust. I hope everybody has someone they trust on that multidisciplinary team that they can reach out to for something like this.

(56:06): [Michelle Kosik] Absolutely agree. All of that information is critical that you're sharing with the providers, because it could be signifying something else is going on that needs some additional testing. We're going to move on to the final question. There are a couple of caregivers that have been caregiving for years for loved ones that had transplants. And just extreme amount of worries over their child's condition and being immune compromised. They're feeling very isolated, worried about their loved one who continues to have a lot of sequelae after transplant. Are there some tips that you could share to change mindsets to help them reset?

(56:55): [Kate Zoll] Yeah, when you talk about mindset, there is this concept of living mindfully. And maybe people can feel that it's a little bit overused, but it's not new. This is based on a very Eastern Buddhist way of approaching things. And that is really trying to not focus on the past or the future, but really trying to be in the present and seeking gratitude for the things that are going right and are going well. Mindfulness, there's lots of exercises, there's lots of apps that help you practice this state of accepting that not everything is good or bad. It just is.

(57:50): I think that, that support community, again, when you have been in this role for years and years, likely your community has changed a lot in how it looks, because your relationships, and some end, some people run away when people are dealing with chronic illness and you get new relationships through connections. And I cannot emphasize enough of the importance of getting that community from other people who are going through this. Again, you are not alone. Every situation is unique, but there are people out there who have paralleled situations that you can connect with to get that support and accept some of what you are going through. So hopefully, that answered the question. And make sure to use those resources on my slides of those connection communities.

(58:52): [Michelle Kosik] Closing. Excellent response, Kate. An excellent presentation. On behalf of BMT InfoNet and our partners, I'd like to thank you, Kate, for your very, very helpful remarks, your excellent presentation. And thank you to the audience for your excellent questions. Please contact BMT InfoNet if we can help you in any way.