Coping with the Stress of Caregiving

Family caregivers are an important member of a transplant recipient's medical team

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Coping with the Stress of Caregiving

Sunday, April 18, 2021

Presenter: Elizabeth Muenks PhD, Clinical Director of Psychological Services, University of Kansas Cancer Center

Presentation is 42 minutes long with 15 minutes of Q & A

Summary:  Caregiving for transplant recipients is a demanding task for which there is little preparation. Caregivers face practical, emotional, and social challenges caring for transplant recipients while also maintaining their own roles. This presentation discusses caregiver challenges and offers some methods for meeting them.


  • Caregivers have elevated risks for depression, anxiety, stress, and insomnia. They often put themselves last and neglect self-care.
  • Caregivers face a steep learning curve and may have to play “bad cop” by enforcing rules and limiting the independence of their patients.
  • Caregiver "burn out "is common as caregivers juggle their own responsibilities and needs with those of the patient 24/7, sometimes for several years

Key Points:

(02:46) Cancer caregivers typically provide over 8 hours of care per day for up to four years.

(04:11) Caregivers for transplant recipients play many different roles and often function as invisible coordinators of needed care.

(06:07) Caregivers may experience more distress than transplant patients themselves, as care needs can expand to 24 hours a day, 7 days a week.

(08:05) Caregivers must assess and help with medical needs with little or no medical training.

(11:03) Caregivers face challenges knowing the boundaries and duration of their care and maintaining their own roles.

(16:28) COVID-19 has created added stresses for caregivers, whose patients may be immunosuppressed and at even greater risk of infection.

(20:26) It’s important to look for red flags indicating caregiver distress. Caregiver burnout is a major challenge and has many different symptoms.

(24:47) Several organizations provide caregiver support resources. Many of these are available online, by phone, or through a telehealth model.

(28:38) Caregivers need reminders to do self-care in language that doesn’t alienate them.

(37:05) There are several techniques for dealing with emotional challenges, including changing our focus, improving the moment, and appreciating our own resilience.

Transcript of Presentation:

Note: In this presentation the speaker sometimes uses the terms “BMT” or” bone marrow transplant.” For purposes of this presentation, both of those terms also apply to patients who have been through a stem cell or cord blood transplant.

(00:01) [Cindy Kessler]      Introduction. Good morning. My name is Cindy Kessler and welcome to the workshop, coping with the stress of caregiving. It is my pleasure to introduce today's speaker Dr. Elizabeth Muenks. Dr. Elizabeth Muenks is the clinical director of psychology services for the hematology and cellular therapy division at the University of Kansas Cancer Center. She specializes in counseling transplant recipients and their caregivers, focusing on quality of life, sleep disturbances, and the connection between physical and psychological health. Please welcome Dr. Muenks.

(00:45) [Dr. Elizabeth Muenks]     Overview of talk. Good morning. Thank you so much for that introduction and good morning, everyone. Thanks for being here. I'm excited to be here talking about dealing with the stress, not excited about talking about the topic, but excited to be here with you all and definitely very much dedicated to making sure that we are paying attention to our caregivers because the role that you play is so critically important, that I'm really happy to be able to spend some time this morning talking about the stress of caregiving and how to get by, because I know it is not an easy task.

(01:25) I'm going to start by just hitting some of the highlights of what I plan to talk about this morning. Just a brief overview of some of the cancer caregivers statistics, reviewing some of the caregiver responsibilities, which of course are not new to you all.

(01:46) And also speak a little bit about the unique position of BMT caregivers. I think our caregivers who are taking care of folks who are going through auto or allo or CAR-T procedures have a bit of a different story caregiving-wise than some of our other cancer populations. So I talk a little bit about the unique position that our BMT caregivers can be in.

(02:12) The emotional and mental health concerns of course we can't get away without talking about the impact of COVID-19 on caregiving. And then I want to, just briefly discuss distress screening for caregivers as a pilot that we are trying out here at the Cancer Center that I work at KU. Give you guys some signs of caregiver burnout to be on the lookout for. And then also of course, talk about some resources and ways to cope and handle and manage all the stress.

 (02:46) With more transplant survivors, there is need for more caregivers. Our cancer caregivers play a huge role. And as we know, as more and more people are diagnosed with cancer, surviving cancer, there's more and more caregivers out there. We've got about 16.9 million cancer survivors and about 22 million by 2030. My goodness, how many caregivers are there involved in the care of all of those patients? About 75% of families have at least one member in their family who's a cancer survivor.

(03:18) Cancer caregivers typically provide over 8 hours of care per day for up to four years.. There are 23,000 stem cell transplants performed each year. That number is on the rise and probably higher especially as we are considering doing more and more CAR-T cell therapy also. And our caregivers typically in the cancer realm provide about 75 to 80% of care, which is a lot, an average of about 8.8 hours of care a day.

(03:47) And so it's no lie when you say that caregiving is a job, a non-stop job that doesn't ever really give a lot of leeway in some ways, on average, more than four years of caring over the course of the cancer journey. And that is a lot of needs and a lot of caring.

(04:11) Caregivers for transplant recipients play many different roles. Caregivers have many, many different roles. They provide unpaid care and health-related assistance, medication acquisition. Ordering the medications, picking up the medication, giving the medications, tracking the medication. So many things medication wise, I think is one thing that is kind of unique to this population of folks is our transplant patients are on a boatload of medications at any given point. I know the caregivers have a lot of management to do there. Symptom management, cooking meals, preparing meals, making sure patients are eating to the best of their ability supervising, ensuring adherence.

(04:58) Caregivers are the “invisible” member of the medical team. Then of course, the usual errand bill paying, providing emotional support, coordinating care with everyone. I mean, there's a lot of cooks in the kitchen when it comes to going through stem cell transplant and coordinating all that care, I think caregivers often tell me that coordinating it sort of feels like it's a job in and of itself. And then all of the communication with providers, which can be, in some ways I'm sure it goes really smoothly and I know communication is always challenging. I know that that role for caregivers can be a frustrating one sometimes in trying to coordinate all the care and communicate with everybody.

(05:41) The caregiver is an essential member of the team. I sometimes refer or have heard our caregivers referred to as the invisible member of the medical team. We've got these very visible doctors, nurses, transplant coordinators, people who are on board in a very visible way that we forget that our caregivers are more informal, so to speak.

(06:07) Caregivers may experience more distress than patients themselves. Caregivers are a huge member of the medical team also. We need you, we cannot do this without you. The social support is invaluable. Our caregivers are essential, essential to good treatment, optimal treatments ensuring compliance and continuity of care. We actually see across the board in cancer caregiving, that distress is actually sometimes higher in our caregivers than in the patients themselves. And there's a little citation there with higher, specifically higher levels of anxiety for the caregiver than the patient, especially when the cancer is incurable.

(06:48) Caring for transplant recipient can be a long-term 24/7 job. Our BMT caregivers, I think some of the unique aspects that sets you all apart is the long-term commitment to care. Whether it's an autologous and allogeneic a CAR-T cell patients, the caregiving is not just a quick one and done weekend, week or two. These are long-term commitments to 24/7 caregiving. And those needs change by stage of survivorship, whether your birthday, at home, out of the hospital, after an allogeneic stem cell transplant or maybe you hit your 100 days, but the GvHD is still a huge concern. I mean, we can talk and get into all the different needs, but I really want to highlight that caregivers are navigating all the changing needs all the time. And it depends on the stage of survivorship, what those needs and caregiver responsibilities might look like. There is not only a significant life disruption to the transplant recipient, but also the caregiver's life is hugely impacted as well.

(08:05) Caregivers must assess and help with medical needs with little or no medical training. And often our caregivers are trying to manage multiple roles, not just being a caregiver for a transplant recipient, but all their other roles, whether that's what they do for work, husband, brother, uncle, friends church member, colleague, all the other roles that they may play.

(08:28) And then just a lot of fear and uncertainty that comes along with the tasks of being a transplant caregiver. I also think it's unique that we ask a lot of our caregivers during the transplant process. And there's very little medical training pre-caregiving unless you happen to be one of the lucky ones where you're a caregiver, some of my patients are like, "Well, my daughter is going to be my caregiver and she's a nurse," or, "My husband's going to be my caregiver and he works in the medical field, "my partner is somebody that is a doctor." Unless you have the luxury of having a medical background, we don't give a whole lot of medical training and yet we ask a lot of caregivers when it comes to medical care.

(09:23) Caregivers face a steep learning curve and may have to play “bad cop.” And I feel like it's a steep learning curve for myself to understand everything that our patients go through. So I imagine it's a steep learning curve for caregivers also. The medication management, like I mentioned before, decision-making and monitoring symptoms, making sure that you're doing everything to reduce risk for infection, being the enforcer of rules and restrictions, this kind of bad cop idea, something that comes up when I meet with our caregivers and patients often where the patient is really feeling like they're being told what to do and how to do it, and they don't have any independence. And the caregiver really feels like they have to be the bad cop sort of enforcing rules and restrictions.

(10:11) And when I talk about that with our caregivers and patients, I often very much validate patient's feeling like they want their independence and nobody really likes being told what to do or how to do it. But then we, as a medical team, we essentially ask our caregivers to be the bad cop. They're not in clinic under our care all the time under our watch. We essentially ask the caregivers to do all of that enforcing. And it's not a job anybody asks for or signs up for. And then of course the post-transplant complications that can arise, whether that's related to various organs or GvHD or cognitive functioning, sexual health. I mean, there's all kinds of long-term impact that can potentially come into play post-transplant as well.

(11:03) Caregivers often don’t have time to process and deal with their own feelings and concerns, while caring for a transplant recipient. Some of the common questions that caregivers have posed to me are things like when do I stop being a caregiver? I don't know how to pull back, there is so much responsibility placed on me. How do I get back to my own normalcy? I've had caregivers say things along the lines of, nobody really understands what this is like, or I don't think I've had a chance to really process all the things that I've been through and sort of my responses to all of this being diagnosed with a leukemia or lymphoma or multiple myeloma or whatever the case may be, the caregivers have their own responses. And I feel like a lot of times they pause their own processing and their own experiences because they're busy doing this 24/7 all-encompassing caregiving which makes it hard for caregivers to take a lot of time to care for themselves and the urgency with which caregivers get involved with many, many expectations thrown out.

(12:15) Caregivers have elevated risks for depression, anxiety, stress and insomnia. We don't always do a great job of saying, okay we throw you in the deep end, but then how do we back you out? And I feel like that can be a difficult thing to navigate sometimes like, "Okay, when do I pull back? When can I kind of let go, how do I start to find by my normalcy again?" When it comes to caregiver, specifically caregiver mental health and some of the things that we see specifically for our BMT patients and caregivers is that with depression, there's a three and a half times more risk for depression several years after transplant, amongst spouses of stem cell transplant recipients. We see a risk for depression even after the fact, several years down the line for spouses specifically for sleep prior to stem cell transplant caregivers report significantly higher levels of anxiety, stress, and insomnia.

(13:20) As things are really kicking up into high gear, I feel like this kind of makes sense as you're getting ready and going through what I think sometimes feel like did we organize chaos prior to the stem cell transplant. We see more anxiety, more stress and more insomnia in the caregivers. Anxiety, less social support, greater marital dissatisfaction loneliness, less spiritual wellness than their peers are all things that are not only reported just kind of objectively or subjectively I should say, but things that we see objectively when we look at their research as well.

(14:05) Caregivers often put themselves last and neglect self-care. Our BMT caregiver needs are significant. I'm not sure that there's any other way to say that we have to make sure that we are paying attention to our caregivers needs as well, physical and emotional needs. I feel like there can be a lot of isolation struggling to know how much to push either yourself or even push the person you're taking care of. Closer relationships may come to play when you're doing this intimate caregiving. But that can also put a huge strain on the relationship as well. There's a significant need and learning to cope and help the patient cope as well. Not only as a caregiver are you coping yourself, but this huge cancer diagnosis and stem cell transplant and treatment is all something that you are probably also helping your loved one cope with as well.

(15:11) And then that formal and informal self-care is often neglected. Caregivers are so busy, it's really, really hard. And I think they often put themselves last just because sometimes there is no choice, there's no choice but to focus on all of the responsibility that there isn't a lot of time for "self-care." I think the impact of COVID-19 has been kind of interesting. I've heard lots of different things from patients and caregivers. On one hand, I think it's very interesting that, not a couple, many of my patients and caregivers that I see on a regular basis have said, "I feel like the rest of the world has just joined us." COVID-19 happened and now the rest of the world is either doing what we already have been doing to get through stem cell transplant, masking being really aware of infections, being away from people, staying in the house. In some ways it's like, "Oh, look, everyone in the world is doing what we do day in and day out or what we already know how to do."

(16:28) COVID-19 has created added stresses for caregivers. And so there's a bit of resiliency and experience prior to COVID, but also I think the impact has also been high for our caregivers with increased need for sort of being the gatekeeper. I feel like our caregivers have gone in and out of limitations and attending visits or being with patients when they're in the hospital. Of course just increasing anxiety and fear when we know our significantly immunocompromised patients being at super high risk for COVID creates a lot of fear and worry for caregivers. And then also caregivers that have had to navigate possible exposures or even COVID-19 positive status and how that impacts being able to care give. Unless people being able to assist with caregiving due to COVID, the additional stressors of work or finances or childcare or everything else that COVID has touched. But especially those support networks being drastically impacted. I don't think the impact of the coronavirus has been light. It has been a significant one.

(17:54) Research on caregiver distress is just beginning. The next slide is just a little capture and it might be a little hard to read on and a little blurry, but it's mostly just a reminder for me to talk a little bit about something that we are piloting here at the University of Kansas Cancer Center and our BMT clinic is actually measuring caregiver distress. I think the most important place to start when we're trying to support our caregivers is to actually ask them how they're doing and not just a, "Hey, how you hanging?" To which most caregivers say fine. But what about actually sitting down and asking the caregiver about their distress? We do this for our patients and I think many cancer centers do screen for distress for the patients, but what about caregivers? We are piloting a specific caregiver distress screening tool that mimics the patient distress screening tool that we use.

(19:02) It's got a couple differences, a couple of different questions that are more applicable for caregivers and patients. And this is something that we're piloting in our BMT clinic and also in our head and neck cancer populations. These are two groups where caregivers have a high amount of stress. This distress screening is given to caregivers to fill out when they're away from the patient. And then there's a follow up phone call just because we know that caregivers probably don't really want to get into all of the stress they're carrying in front of the person that they're caring for. I mean, I think the communication is and can be very open and patients and caregivers are probably very much aware of each other's stress at times, but we wanted to also make sure that we were giving caregivers an opportunity to kind of speak freely also.

(19:56) This is something that is very near and dear to my heart and looking forward to seeing what kind of results we get as we continue piloting this. And I'm assuming that our referrals specifically to psychology for caregivers may increase, but I think that's a good thing that we have the ability to provide some resources and some psychological care to our caregivers in addition to our patients, or at least be able to help them with some resources.

(20:26) It’s important to look for red flags indicating caregiver distress. Some of the major red flags, when I think like, "When am I really, really worried about a caregiver?" I know that the stress day in and day out is there. And that at baseline, our caregivers are probably finding all of their responsibilities to be challenging, but some of the things that really make me stop and think like, "Whoa, okay, what's going on?" That a red flag. A noticeable change in appearance a change in communication styles. Maybe somebody who is usually pretty extroverted is now very, very quiet, obvious changes in behaviors. When the patients tell me, "Hey, Dr. Muenks, I'm really worried about my sister or I'm really worried about my significant other. I'm really worried about my friend who's caregiving for me." When the patients express concern, I think that definitely needs to be listened to.

(21:23) Caregiver burnout is a major challenge. And of course I think something we always need to be paying attention to is when there's a change in the complexity of the need. Something really drastic changes. Like for example, the patient does contract COVID-19, there's a huge change in need here and so that is going to probably put a huge stressor on the caregiver and we definitely need to be paying attention and caregivers sort of paying attention also to themselves with what's going on when the complexity of the needs change. Those are things that I think are important to be attentive to. These are some of the signs of when a caregiver is burnt out. I think some caregivers are like, "Yes, so what? I'm burnt out. I can't quit. I can't stop." And that's 100% absolutely true. And I think sometimes just being aware of the burnout is critical because even though many of our caregivers were like, "Well, what am I supposed to do? Of course I'm burned out, but I have to keep going."

(22:37) Caregiver burnout has many different symptoms. Yes. And along with keeping going, we've got to find a way to help mitigate some of that burnout because sometimes the burnout gets so bad that then the caregiver is unable to provide caregiving and we don't want that to be the case. Some of those signs of caregiver burnout include caregivers ignoring their own health problems or symptoms, eating poorly, overusing tobacco, alcohol or other substances, giving up exercise, if that was something that they were adamantly or doing pretty consistently, losing contact with friends, bottling up feelings of anger and frustration, outbursts, feeling resentful or unreasonably annoyed. I hit that, the nail there, on the unreasonably annoyed because I'm sure there's lots of feelings of resentment and feeling frustration, but this is out.

(23:34) This is this big, not what's kind of the norm or the usual. Feeling anxious, distressed, sad, hopeless. And I put that two week, the two weeks in parentheses, because it's a big indicator to me that in two weeks, if there have been more bad days than good days, so to speak, or more days of feeling anxious and distress and sad or hopeless that doesn't really just have a break. It's reads two weeks or more of feeling that way. That could be a sign of burnout. Blaming the patient, feeling tired all the time, sleeping poorly, trouble concentrating. There may be a different constellation of what burnout looks like for each person. And one or two of these happening, I think is probably to be expected to when I start to see caregivers that are like, "Check, check, check, check," to every single one of these things are a lot of these things, I think, "Oh my goodness. I'm so I'm so worried that this caregiver might be burning out."

(24:47) Several organizations provide caregiver support resources. So what? What do we do about it, what can you do about it? What can patient encourage their caregivers to do? What can caregivers do to help mitigate some of this? And this is just a slide with some of the visuals of some of the resources that I often utilize or point caregivers to. Our own BMTInfoNet has great resources for caregivers including a caring connections program. Be the Match also has great resources. They have a one to one telephone support that I think could be really useful. I've had caregivers report back to me that that's useful. They also have the caregivers companion book, which has some great ideas and resources in it as well.

(25:43) Leukemia & Lymphoma Society has caregiver support resources. Lotsa Helping Hands is one that I was not familiar with until recently and actually a caregiver told me about it. And I looked into it. It's very organizational. So it's kind of a practical resource with calendar then knew organization and ways to sort of coordinate others helping out, which is great or just a way to kind of help to organize. And then there are some online therapy options like Talkspace that can be helpful if you just need some additional support, but kind of on your own terms, whether you need to do that by texting or online or telephone or whatever the case may be, although with COVID-19, I feel like a lot of counseling support has transitioned to having a telehealth piece.

(26:44): And so that helps where patients are kind of able to do and get that support wherever they are without having to break in their schedule to go to a physical appointment for themselves which I know is always something that's been really hard when caregivers are like, "I would really love to talk to a counselor or a psychologist or somebody but when am I going to do that?" I do feel like in some ways COVID has helped us be able to get services to people a little bit easier with the telehealth option. Caring for the caregiver. Sometimes my patients will ask me what can I do to help the person who's dedicating themselves to being my caregiver. And I often tell them if you can encourage your caregiver to take some time off, finding even the smallest contribution that you can give to really feeling a burden.

(27:44) Patients often feel like a burden on their caregivers. Many, many patients say, "I'm a burden, I'm a burden, I'm a burden." And the caregivers are usually saying, "No, you're not, no, you're not, no, you're not." And I can never bring myself to tell a patient, "No, you're not a burden," because how they feel is how they feel. And I think patients are very aware of the complexities and the challenges that their caregiver is having to manage as well. And it's hard for them not to feel like a burden. I often say fine, if you can find one small thing that you can do, even if that's maybe you can't go down the steps to get the laundry and bring the basket up, but maybe you can fold then put it on the bag or maybe you can't get up and cook a full meal, but you can make the grocery list or finding just small contributions or little ways to say thank you.

(28:38) Caregivers need reminders to do self-care in language that doesn’t alienate them. Whether that's just a little note and I love you, whatever the case may be, ways to show gratitude, which I think everybody appreciates from time to time. Encouraging caregiver to utilize your own outlet, being open and honest with the caregiver and being a listening ear also supporting their hobbies or activities that bring them meaning or joy and then being mindful of language. I'm going to talk about both sides of my mouth here for a second. I try to be mindful also of telling caregivers, "You need to do better self-care. You need to self-care." Self-care, self-care, self-care. One time, I think I said that to a caregiver and I swear she looked like she was about to just read her mind because I think everyone had been telling her that she needed to do self-care.

(29:42) And I think that sometimes that language can be very frustrating because caregivers are like, "Yeah. I know. I'm aware of the fact that I need to take care of myself, but I am so busy taking care of somebody else that that self-care thing is almost like a joke." And I get that and I validate that and I have not been in the position of being a caregiver for ... I'm a caregiver for stem cell transplant patients and that I'm blessed to be in a position where I can help take care of the emotional and psychological parts for our caregivers and our patients. But I myself have never been a caregiver. But when I'm stressed out and somebody tells me, "Hey, Liz, you really need to do a better job of self-care," I kind of want to throw a punch and be like, "You don't think I already know that."

(30:42) We all could find ways to avoid using that self-care terminology because sometimes I think it can be a little triggering or a little frustrating. And so that brings me to talking out of both sides of my mouth because here I'd have self-care on this slide. I'm still trying to find ways to talk about self-care in language that feels a little bit more understanding and maybe that's not so much self-care but like, "What one thing can you do that might help relieve a little bit of that anxiety or relieve a little bit of that stress?" And these are just some ideas obviously sleeping, eating, and exercise are so important. I think it's asking a lot for our caregivers to prioritize all of those things.

(31:38) Small steps may be the key to effective self-care. Sometimes I just say like, "Can you pick one?" Or like, "What's the one you're going to try to focus on this month?" Maybe this month you just focus on trying to get some adequate rest or next week you focus on getting that exercise routine back in place. One thing at a time. Mindfulness and relaxation practices can be helpful asking for help and utilizing supports, which nobody wants to ask for help. I know. I often tell as many people as I can, if you know somebody who caregiving, don't ask, what can I do? Don't say, call me if you need something, find something to do and just do it because asking for help is something most people do not want to do. But if you are pressed and it is also okay to ask for help and oftentimes many people are kind of standing in the background as wanting to be helpful, but not knowing how to and giving them something to do can sometimes actually help them more than it helps you.

(32:39) “Radical acceptance” is a healthier mindset for caregivers. Focusing the things that you can control, celebrating small victories or finding a silver lining, expressing feelings, scheduling a self check-in with journaling or some asking a friend to hold you accountable, to just check in on how you're feeling from an emotional standpoint and then practicing radical acceptance, which is this idea that you sort of have to accept life on life's terms. That's kind of how I think about radical acceptance. Because sometimes problems can't be solved and it can be really exhausting to fight against the reality. And I hear a lot of people say, and I've been guilty of saying, "I can't stand this, this isn't fair. It shouldn't be this way." It's as though that refusing reality somehow will keep it from being true, but that doesn't really work. And so finding a way to accept which doesn't necessarily mean that you agree or that it's okay. It's just sort of accepting things as they are because in life there are very painful things. And if you pair that with nonacceptance, you end up with suffering.

(33:55) And so if you can at least pair the painful challenges, the things that you wish were different with a bit of acceptance, it doesn't quite feel like it's so much suffering. That idea of radical acceptance is leading me into a couple of just skilled or tangible ... I like to leave people with, "Here's something that you can try, that you can do in addition to exercise, eating healthy, sleep, relaxation techniques, talking to your friends, utilizing your social supports." I think people know a lot about those ways to care for themselves. But this skill right here is called using your wise mind which I think some of us sometimes can be in more of an emotional mindset or you might know somebody who operates from this kind of hot spot where reason and logic is just out the window and everything is driven by emotions, very reactive.

(35:00) Using a wise mind and rational thinking can help with debilitating emotions. And then you might also know people that are more rational minded where they can kind of remove the emotion completely from the picture and just see the facts, very logic, logic research focus. I often encourage people to think about either where they tend to land, if they tend to operate more from an emotional mindset or a rational mindset, or think of a movie character or a book character or somebody that kind of encapsulates that rational mind and somebody that kind of encapsulates that emotional mind and sometimes finding a balance of those two can help with just general coping. In your wise mind and tapping into your wise mind, which in my head is sort of this wise Yoda or if you've seen the Lion King, my wise mind character is Rafiki, the very wise monkey which is a balance of two of these things.

(36:00) You need both to keep yourself feeling like you're in a stable place. And so sometimes I think when things get really hectic or really distressing, we have to pause and be like, "Okay, let me look at the rational side of things. Let me acknowledge the emotional side of things and let me find this happy medium of my wise mind where I can kind of just sit and be intuitive and be in the moment and find a balance between these two so I don't feel so out of luck or off balance." I think that this wise mind accept skills. So a couple of these skills are each letter of the skill name stand for something. This is a little skill set that I think is helpful for in the moment, trying to get through a really tough week, trying to engage in some kind of activity that helps you feel a little bit better.

(37:05) There are several techniques for dealing with emotional challenges. Contributing, I know our caregivers are already doing a lot of contributing, but sometimes dropping a little note in the mail for someone else or handing a bottle of water to the other caregiver in the waiting room or whatever you to do from a contributing standpoint. And sometimes it can help to do something for someone else. Comparisons, this one is good for some not good for all. It could be worse. The juxtaposition or maybe a previous time in your own life when things are really hard. I think the comparison piece is tough. Some people really do find it helpful to think, "Oh my gosh, this could be worse." And sometimes I think that comparisons is not a good fit for people and it's not a very helpful approach. I just throw that out there as a potential, I know that works for some and not for others.

(38:04) Doing something to change your emotion or generate a different emotion than the one that you're currently feeling. And this could be, "Okay, I've got to turn the news off and turn on my favorite sit-com or I've got to watch kitten videos, or I've got to do something that changes my emotions." I had a caregiver one time tell me that when she was in a funk, she would go and read the funniest greeting cards at the Hallmark Store, which I thought was really interesting. She just always said that she would find the funniest cards and they would make her laugh and that would help at least change her emotional state for the temporary. Sometimes they got to just push away the bad stuff. And like I said, these are things to just get you through these. These different skills aren't necessarily going to change everything but they can help in the moment.

(39:04) “Improve the moment” is another skill for dealing with stress. Kind of putting feelings and tough stuff on the shelf and saying, "I can put this away for now. It's not going anywhere. I don't have to give it all my energy right now." Doing something to change your sensations, like taking a hot bath or drinking warm tea or using something that grounds you to your senses. The last skill that I will just really quickly run through because I know we're running low on time here is, a skill that's called improve the moment, which is designed for helping when the stress hits and it's high and you've got to do something in the moment just to get through, not going to solve the problem, but it's going to get you through a distressing moment. And again, here we have each letter of the skill named stands for something.

(39:49) Imagery can be useful for relaxation and mindfulness. I stands for imagery. Bringing to mind a really beautiful image that you can think of, or thinking about a place that you visited that was really beautiful there's research that shows that the theme parts of the brain are stimulated. So if I go to the Rocky Mountains and I see this beautiful mountain top with a lake at the bottom, I get all of these really positive brain chemistry things going on. 10 years down the line if I can pull that image to my head, the same parts of the brain light up so they can help change the mood or make you feel a little bit better. Doing something you're engaging in something meaningful, engaging in prayer. If that's something that's helpful to you, if spirituality or religion is not something that's high on the priority list, this can be a mindful meditation or tapping into spiritual or higher power of some sort.

(40:39) Doing something for relaxation. I think most people know themselves best for how they relax best. Doing something mindful or something that grounds you to just doing one thing in the moment. A vacation, which sounds great, every caregiver wishes they could take a month off and go to Hawaii, I'm sure. But I think vacation can be as simple as jump in bed, pull the covers over your head for five minutes and just take a break or the vacation could be a weekend getaway or whatever you can make work, even if it's just a five minute vacation, sometimes that can help and then remembering to be your own cheerleader and encouraging to acknowledge all that you've been through, all that you contributed and somehow you're still standing. Both our patients and especially our caregivers have an incredible amount of resiliency.

(41:36) Caregivers need to remind themselves of their own resilience. And so I think sometimes reminding yourself just how resilient you are and that you are still standing is really, really important as well. I will wrap up there and make sure we've got some time for some questions or comments and I will do my best to answer the questions that I can. Thank you so much for joining me this morning and tuning in.

Question & Answer Session

(42:07) [Cindy Kessler]  Thank you, Dr. Muenks for this excellent presentation. We will now take questions. As a reminder, if you have a question, please type it into the chat box in the lower left-hand corner of your screen.

First question is, as a caregiver, I handle drugs from a cardiologist, neurologist, transplant doctor. So I deal with 20 to 30 drugs a day for my husband. The neurologist refuses to talk to me, even though I have a power of attorney and a health power of attorney. Any suggestions for better communications without involving a lawyer.

(42:48) [Dr. Elizabeth Muenks]      I think that's a really great question. I have a couple thoughts. If there is a way to directly have a discussion with the medical team member who's not being so great on the communication end to say, "Hey it's my job to manage all these things and I really need your input and your support. I have permission to discuss medical care. What can we do? What can I do to improve this communication? Or how can we set up a communication pattern network so that I can stay in the loop?" If it's possible to have that discussion with the provider, that's one route. Sometimes that's just isn't possible. And so then I say, ask for help, find that person on your medical team that you do trust, that you do have a good relationship with and say, "Hey, I'm having trouble with this neurologist. Could you help me navigate this communication? Or could you reach out to this provider and let them know how important the communication is so that we can get on board?"

(43:59) I think utilizing the pharmacist can be helpful, too. I think sometimes I forget that the pharmacists are a wealth of information themselves. And so sometimes I'm utilizing them for extra help. Whether that's at the pharmacy. I don't know how a lot of other BMT programs work, but we have a pharmacist that works specifically in our clinic who is available to review medications and just kind of sit down with patients and caregivers and go through things and be helpful in the communication standpoint. Trying to reach out to that provider and ask what can we do to get this communication on track or asking for some help to make that happen would be my suggestion.

(44:50) [Cindy Kessler]      Wonderful. Thank you. Next question is, explain living mindfully.

(44:57) [Dr. Elizabeth Muenks]     Sure. I think living mindfully is not conducive to the type of life that we live that are very high quick pace, high pace. Mindfulness in a nutshell means in the present, not caught up in what's to come, not caught up in what's already happened because we can't change it. But being right here right now. And mindfulness is not new. It seems like it's kind of the hot word, hot topic. We're teaching it in schools to kids so that they can be better at managing their emotions. We're using it in the corporate world because when people are mindful, they're more productive, we're using it in mental health because depression tends to be sort of past should have, could have, would have, anxiety tends to be very, what if this, what if that, future oriented and so practicing being mindful and being right here right now sometimes helps pull us out of the future and out of past.

(46:03) To live mindfully means to live present, to be in the present. And this is not a new idea. It's very Eastern religion, Buddhist-based. And so if you can imagine a Buddhist living in the Himalayan Mountain, living this very mindful life day in and day out, where you're here, you're here now. Everything is as it should be. I'm focusing on my breathing. Great. I'm not saying that I have the hardest time sometimes in teaching mindfulness to folks, is that I find it hard to practice myself. Sometimes I think if I'm just trying to practice what I preach, I have an app on my phone, actually, that triggers me. It just says, be mindful. And it gives me a 60 second countdown. And I try to stop whatever I'm doing if I can in that moment and just let my brain just be and just do one thing, whether that's drink my water mindfully or actually sit down and eat a meal mindful, even if it's only five minutes of it or walk from the parking lot into the store, mindfully, count my steps, count my breath.

(47:17) That's a long answer to saying living mindfully just means trying to live in the present. And it's a practice which can be formal or informal. And it's also a philosophy. Mindfulness philosophy would also say every moment is as it is. There's no good. There's no bad. It just is. Mindfulness is also trying to trust your inner gut and not judging it as good or bad either. Short answer, mindful living, living in the present.

(47:54) [Cindy Kessler]      Thank you. The next question is, how do I offer encouragement without seeming to minimize my patient's fears? I want to tell her everything is going to be okay and that she needs to be okay, but she has so much fear sometimes.

(48:12) [Dr. Elizabeth Muenks]      That's a great question. I think validation goes a long way. And sometimes I think it's okay to say like, "I really do believe that things will be okay in the way that they need to be okay. And I recognize that right now things are not." I think sometimes an and helps instead of a but. I know that you're struggling, but it's going to be fine. Simply changing that. I know you're struggling and it's going to be okay, give a little bit of acknowledgement to both sides. It's really tough and you're getting through, you're really scared and somehow you're making it day to day. Things seem really hard right now and that doesn't mean they're going to be that way forever. A little bit of both I think goes a long way, a little bit of validation along with the encouragement.

(49:14) [Cindy Kessler]      Thank you. Next question is, regarding caregivers’ support groups, do you recommend caregivers go to the same therapist as patients?

(49:25) [Dr. Elizabeth Muenks]      Yes and no. I think sometimes I do often recommend that caregivers see a different therapist, especially because I think it's really important for caregivers to have their own space. And there are things that I think both patients and caregivers will not say in front of one another. I think it's really, really important to have separate space. Although that being said, when there are joint sort of dynamic concern, there are times where I will see the caregiver and patient together. If that's helpful to get some things discussed in that format. But otherwise, generally I would say it's probably helpful to have different therapists.

(50:16) [Cindy Kessler]      Thank you. Next question is, are there any resources you would recommend for keeping track of all the details of caregiving? Are there apps, notebooks or anything like that?

(50:31) [Dr. Elizabeth Muenks]      Yeah. I think the Lotsa Helping Hands website can be helpful. I believe the Cancer Support Community, I think has some good resources for ideas for specific apps that can be helpful. I'm blanking on the name of it. If I can Google it while I'm looking. There are apps out there, I'm sorry I'm kind of fumbling in knowing which ones off the top of my head are most helpful, but that Lotsa Helping Hands one that I mentioned before I know is more of an organizational one that is helpful. And there are other cancer caregiving apps that have options for note taking for appointments, a calendar, a schedule. I think if you search it out, it does exist.

(51:31) [Cindy Kessler]      Okay. Thank you. Next question is, I'm a stem cell transplants recipient five years out who is now a caregiver for my wife who was going through breast cancer treatment. I'm doing very well so far, but on some days they are very trying. Can you talk a little bit about someone in my situation?

(51:53) [Dr. Elizabeth Muenks]      Yes. I think that's a tough spot to be in, having your own cancer experience and then probably being the receiving of a lot of care and then transitioning into being the caregiver. I think it's probably important to pay attention into the role shifts and the role changes. Maybe that's something that some people are like, "I'm so happy to be a caregiver," but it's also scary. You've got two different cancer experiences. And recognizing that you can probably use some of your experience and notice what it's like to be on the receiving end of being somebody who's cared for. I think that puts you in a unique position of being a really great caregiver because you have experience and knowing what to do and what's helpful, but also it's different people. It's also important to while recognize that you probably have some experience, everybody is a little bit different and I think sometimes other people's cancer experiences can trigger things in your own experience.

(53:04) I would say just sort of being mindful of what's coming up for you as you're being a caregiver and doing what you need to do to process that or catch things that come up as they do, sounds like things are going really well so far, which is fantastic. I would just say, when do you have your own cancer background and then you become a caregiver for somebody else with cancer, it's important to pay attention to what it brings up for yourself.

(53:30) [Cindy Kessler] Thank you. And the next question is, I know it is wrong, but sometimes I feel resentful of my husband. I'm working so hard to get health and get well, and he just doesn't understand how hard it is.

(53:51) [Dr. Elizabeth Muenks]      I hate, that sounds like a really familiar thing that many caregivers I think express. Feeling that resentment and as the patient, I think there probably are a lot of things that our patients don't understand about the challenges of being a caregiver. And I don't think it's wrong to feel resentful. I think it's probably not a feeling most caregivers want to have, but I also think is important to acknowledge if you are feeling that way, you're feeling that way and your emotions and your feelings are valid. I think it's important to have outlets to discuss that resentment because it's probably not something that you want to talk to your husband about like, "Geez, I really resent you, get out of here, you don't get it."

(54:43) I mean, and maybe in some ways it's helpful to express some of that also, but that resentment is something that's common that comes up, that I feel like is really normal and is not wrong. And I think you don't even have to label it that way. It's not good. It's not bad. It's not right. It's not wrong. It just is what you feel in the moment. And you have every right to feel that way. If there are ways to utilize your own outlets and try to get some resolve on that feeling, I'm sure it would probably feel a little bit better because I know that resentment place isn't a place that people want to stay in. But I do think it's important to acknowledge if you are there, that it is what it is and you have every right to feel that way because the caregiving responsibilities are hard to understand. I would say definitely not wrong. It is what it is and whatever you can do to utilize your own outlets to help move through some of that is important.

(55:49) [Cindy Kessler]      Thank you. Well, we're almost out of time. I think we could squeeze in one last question. It is, my spouse has a lot of mood swings from the steroids he is on and it has taken a toll on the family. How do I help my children who are four and eight, understand what is happening?

(56:09) [Dr. Elizabeth Muenks]      That's a really great question. It's hard for even adults to understand what's happening when the steroids are on board. Sometimes for kids, it can be helpful to sort of talk about their daddy with this medication and daddy without this medication. Compare it to something that they understand like, if we give you a ton of sugar, you're probably going to have a whole lot of energy or if you stayed up for two nights after you're up all night after a sleep over and you're really grouchy, there are some things that just have an impact, some things that just make us kind of different versions of ourselves and trying to kind of help kids understand that there's sort of one version of daddy when he's not taking this medication that he needs but then there are some things that are versions of daddy that happened when these medications are onboard and we have to roll with it and know that it's not always going to be forever and encouraging kids to ask questions or talk to the other parent if they are worried or have concerns is important also.

(57:29) [Dr. Elizabeth Muenks]     Closing. Thank you for that answer. That will be our last question. And on behalf of BMT InfoNet and our partners, thank you Dr. Muenks for your very helpful remarks and thank you, the audience, for your excellent questions.

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