Coping with the Stress of Caregiving
July 14, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020
Presenter: Jamie Jacobs PhD, Director, Caregiver Research, Cancer Outcomes Research Program, Massachusetts General Hospital
Presentation is 40 minutes with 19 minutes of Q&A.
Summary: The physical and emotional needs of caregivers for stem cell transplant recipients are often unaddressed, as the medical team focuses on the needs of the patient. Caregivers need to identify strategies that will help them manage chronic stress for the long-haul.
- Research has shown that caregivers for stem cell transplant patients can experience as much or more stress than the patient during various points of recovery.
- Taking time for self-care is important for both the mental and physical health of the caregiver.
- Relaxation exercises, separating those things you can control from those you cannot, and scheduling time to take care of personal needs can help manage the stress of caregiving.
07:40 The stress of caregiving affects mental and emotional well-being, as well as physical well-being.
09:18 Stress resulting from long-term caregiving can increase the likelihood of getting sick, produce more inflammation in the body and interfere with sleep.
11:23 Relaxation exercises can help combat the stress brought on by caregiving responsibilities.
12:36 One effective form or relaxation is progressive muscle relaxation (PMR).
25:01 There are two types of coping strategies: active coping and emotional coping.
27:33 Active coping involves identifying things that are within your power to change and taking steps to do so.
30:30 Emotional coping consists of strategies, such as relaxation, to help you cope with things you cannot change.
32:09 Although difficult to plan for, self-care is very important for caregivers of stem cell transplant patients.
41:13 Caregivers provide three types of support to stem cell transplant patients: emotional support, help with activities of daily living, and sharing information between the patient and healthcare providers during recovery.
45:12 Caregiving can mean switching usual roles between the patient and caregiver in the family, which can generate stress.
Transcript of Presentation
00:01 [Moderator] Welcome to the workshop Coping with the Stress of Caregiving. My name is Michala O'Brien and I will be your moderator today. It's my pleasure to introduce you to our speaker, Dr. Jamie Jacobs.
Dr. Jacobs is an assistant professor in the Department of Psychiatry at Harvard Medical School and a clinical psychologist at the Massachusetts General Hospital Cancer Center. She is also Director of Caregiver Research in the Outcomes Research and Education Program at Mass General. Dr. Jacob's work focuses on improving the emotional and physical well-being of patients with cancer and the individuals who care for them. She is currently developing a mobile app to enhance coping and stress management for caregivers throughout the transplant process. Please join me in welcoming Dr. Jacobs.
00:51 [Dr. Jacobs] Thank you, Michala, for that introduction. Hello to everyone. Good afternoon. I'm really excited to be presenting to you all, at least virtually. As was said already, I'm a clinical psychologist at the Massachusetts General Hospital and a lot of my work, both clinically and in my research, has focused on improving the lives of caregivers, as we call them. But you all might refer to yourselves differently. I've had people who have said to me, "I'm not a caregiver, I'm her husband."
01:26 I just want to acknowledge that even though we use this term "caregiver" and it's not perfect, it's an imperfect world we live in terms of the terms that we use to describe things. So, please do, whenever I say "caregiver," replace that with whatever, however you describe yourself. I'm sure that on this call, too, there might be people who are being cared for. I think that in all different times in our lives we all step into this role, into this caregiving role where we are taking care of someone else be it a parent, or a child, or a friend.
This is focused on caregiving as we call it in informal caregiving. Meaning that we're not getting paid to do this, we are stepping in to take care of someone that we love or someone close to us, maybe even someone that we have a difficult relationship with but we are stepping in to help them in a time of need, and in this case either during transplant or after a transplant. I know this is a survivorship symposium, but we never know what point we'll find ourselves in, and so I'm going to be cognizant that caregiving extends throughout several different phases of life.
Overview of Presentation on Caregiving
02:47 I'm going to be talking today about how we cope with the stress that's associated with being in this caregiving role. This can often amount to a great deal of burden and stress. And I don't love the word "burden" and it sort of has a negative connotation. But I think we can all acknowledge that stress can be good and bad. Even though we might really find a lot of meaning in being able to take care of someone in a time of need, that doesn't mean that it is not stressful at points and it is not overwhelming.
We're going to talk a little bit about the negative effects of stress on the body and how we want to combat that with three different coping strategies that I'll talk about today. Starting with relaxation as a skill that we can use when anxiety is mounting, moving into something we call "active coping," which is taking more control and having more agency on how you respond to stressors, and then ending finally with self-care and setting an intention for self-care so that you can incorporate self-care practices back into your day and back into your life to buffer the effects of stress on your emotional and physical well-being.
As I mentioned in the beginning, probably several of us on the line have been taking care of a loved one, or have been taken care of by a loved one, and has at some point provided care for anyone else in their lives, and so this can apply to the transplant experience and the ongoing stress post-transplant, but it can also be applied to general stress in life.
I do want to say congratulations for those of you who've logged on because you're taking the first step in buffering those effects of stress on the body by taking the next hour to focus on you and to focus on how can I better myself despite the fact that I'm in a very stressful situation of being a caregiver for someone who has who relies on me. And maybe even a caregiver for multiple people, right? It's not uncommon that we're both taking care of someone during or after transplant and then we also have children or parents who need our support as well.
Research shows family caregivers for a stem cell transplant recipient have many unmet needs.
05:10 What the research shows is that there are many unmet needs of caregivers. Caregivers often, believe it or not, have more of these unmet needs than patients. This isn't surprising because, obviously, as a patient, when we go into the hospital we meet with our doctors, our doctors, rightly so, are very focused on our health and we are the patient and we are the ones that need medical attention and need symptom monitoring. But that often means that the caregiver is sometimes like the invisible patient in the room where their needs are overlooked or considered secondary. Because we've acknowledged this more and more, we now have understood, as a field, that we need to move towards better understanding the needs of caregivers during transplant and after transplant.
It's difficult for caregivers of stem cell transplant recipients to find time to take care of themselves.
A day in the life of a caregiver, just generally. As I mentioned, I do some research in this area. We had interviewed several caregivers and asked them, what do you spend your days doing, how do your days look, and [what's] challenging about that for you? I'm sure several of you can relate to all of these different tasks that take up your day. The question is at the end here: where do I find time for self-care? Where do I find time to make sure I'm sleeping, I'm eating, I'm being physically active? This is a difficult thing to find time for. I hope that the last exercise we do today will give you a sense of how you might be able to do this, both meaningfully and also considering the little amount of time that you might hav
06:57 In addition, someone said, "I don't go out with my friends." This is the quote in blue box on the right. "I don't go out with my friends as much by myself because I don't want to leave." She didn't want to leave her husband by himself. This is a common theme amongst caregivers, is even if they want to do something or find the time to do it, they often don't feel comfortable leaving the person that they're caregiving for. So, we want to think creatively about how we can build back in your social supports while not feeling like you're being neglectful or that you would be out and just constantly worry that something was going to happen to the person that you're caring for.
Stress associated with caring for a recovering stem cell transplant patient affects both the mind and body.
When we're stressed, and if we were in person I'd poll the audience on this and I think several of you would raise a hand, if you've noticed that you're more susceptible to the common cold when you're stressed, that you feel more irritable, that you're having more difficulty sleeping when you're stressed, there's a biological reason for this. I'm going to explain it in a moment, but it makes it even more important that we tackle this idea of stress and that we learn how to cope because stress does not just affect our mental and emotional well-being, but it also can take a physical toll.
Similar to this idea of putting on your own oxygen mask before you put on someone else's, we have to take care of ourselves if we're going to take care of someone else. If you are not in a good physical state because you have a cold, or you have the flu, or you're more irritable, or you haven't slept the night before, how are you going to reasonably take care of someone else? We need to make sure that we're in a good spot both for ourselves and for the person we're caring for.
08:48 Let's move in now to these three coping strategies. I hope by the end of today you'll walk away feeling like you have some tangible things you can do when you're feeling stressed. Relaxation. Relaxation goes beyond... I think often when I say relaxation people think, "Oh, yeah, I take deep breaths and I count to 10." I'm going to take a few moments today to teach you a more evidence-based and effective relaxation tool.
Stress produced by long-term caregiving demands can increase the likelihood of getting sick, having more inflammation in the body and not getting enough sleep.
09:18 Relaxation exercises are based in the idea that we have this stress response that's very automatic and it's very biologically adaptive. What does that mean? That means that our stress response has evolved with us as species over time in order to keep us alive. That means when we're faced with something that's life-threatening, it might have been a saber-toothed tiger back in the day, we have a response in the body that allows us to either fight for our lives or flee for our lives. You might know this as the fight or flight response. Sometimes you can also add freeze. Sometimes we freeze up, right? Fight, flight, or freeze. Each of these is adaptive in their own way.
But what that means is that when we get stressed today, in modern times, that might mean when we're sitting in traffic or we're getting in a fight with a friend or a spouse, we have this surge of hormones in the body: adrenaline, cortisol. This is important because the adrenaline, the cortisol, all these other chemicals in the body that are surging allow us to run really fast or to fight for our lives.
The problem is that when we're in a chronic stress stressful situation, which caregiving is considered chronically stressful, the transplant process is a long period of time and emotional and physical sequelae can last for years beyond the transplant itself, and so we have to take into account that these chemicals in the body sometimes don't go back down the way they're supposed to. Usually, they rise up and they allow us to fight or flight and then they come back down. But when we're chronically stressed, they just stay elevated. This is important to understand because that constant elevation can lead to other issues. Like, being more likely to get sick, having more inflammation in the body, having issues with sleeping. So, there's this physical wear and tear.
Relaxation exercise combat the normal stress brought on by long-term caregiving responsibilities.
11:23 What the relaxation response does is it aims to combat the stress response. As I mentioned, usually, the adrenaline would come down and the cortisol would come down after you're out of this life-threatening situation, but with chronic stressors these remain elevated. So, we sort of need to help them along to come down. We need to say, "Okay, body, you're okay. Yes, you're stressed, but you're not in a life-threatening situation." So, let's dampen this stress response. Let's bring down the cortisol, the adrenaline. All of that will lead to less issues with sleep, with inflammation, less likelihood of getting sick.
The goal of relaxation is to activate the relaxation response in order to dampen the stress response. Now that doesn't mean that once you learn how to do these relaxation exercises that you're going to all of a sudden be in a stressful situation and your fight-or-flight response isn't going to turn on for you. That's not what we're aiming to do here. Your fight-or-flight response is built-in, it's biological, it's not going away. We are just learning how to turn it off when it doesn't need to be engaged or doesn't need to be continuously engaged.
Progressive muscle can help control stress.
12:36 We're going to do that today with something called Progressive Muscle Relaxation. Progressive Muscle Relaxation has been around since the early 1900s. It has a very strong evidence based behind it and it's something I like to call an "active relaxation," meaning you're not just saying, "Okay, take deep breaths, take deep breaths," and expecting your body to calm down. You're actually activating different groups of muscles and you're tightening them and then you're releasing them. By doing this, you're focusing your attention on what it feels like to be very tensed and then to be very relaxed.
This sort of works like a pendulum. If you were sitting, and you'll all have to humor me, I'm going to trust that you're all doing this if you're tuned in, but if you were sitting, wherever you're sitting right now, at a desk or a table, and if you were sitting and I said just now, "Go ahead and relax," you would be going from sort of a neutral state to a relaxed state. And it would be hard probably for most of you, including myself, to notice the difference between a neutral state and a relaxed state.
Contrastingly, if I told you to tense your muscles, so maybe just take your fist and punch your fingers into your thumb, into the palm of your hand and make a fist, and then I said, "Relax," that's a difference that you can very easily notice, being tense and then being relaxed. Similar to the pendulum, we have to swing one way in order to swing the same amount the other way, so Progressive Muscle Relaxation works by tensing a muscle group and then relaxing the muscle group. In doing so, we're noticing the difference between tension and relaxation more easily.
Then, the second idea behind PMR is that by doing this, noticing the difference between tension and relaxation, we can pick up on it during the day. How many of us have gone through our days and we're holding tension in our jaw, or in our neck, or in our back and we get to the end of the day and we're like, "Oh my gosh." Just opening up your jaw and realizing that you've been clenching it or you have a headache at the end of the day because you've been holding so much tension in your neck and you have a tension headache.
So, if we start to notice the difference between tension and relaxation, then we can identify it during the day and say, "Oh gosh, I'm tensing and I'm going to release that tension now," instead of not noticing and not being aware all day of our tension and getting to the end of the day and being in pain. Those are the ideas behind Progressive Muscle Relaxation.
Unfortunately, you can't... I didn't realize you wouldn't be able to see me today, so I'm going to describe to you each muscle group and then we're going to do this together. It just takes a few minutes. For the first muscle group, your hands and arms, you're going to hold your arms at a 45-degree angle and make a fist. Just like if you were going to say, "I'm so strong," and you're showing your muscles off in your biceps. This is not supposed to be painful. This is not supposed to cause any aches or pains in your body. You're just creating enough tension that you can then release it. The hands and arms, both arms are up and in a 45-degree angle and with fist.
Then we're going to move onto the face and neck and I will walk you through all of these. The face and neck, I like to say that the stranger you look the better you're doing it. You're going to: raise your eyebrows up and squint your eyes, wrinkle your nose, bite down just ever so slightly, pull back the corners of the mouth, and pull your head slightly down to your chin. You don't have to do all of these things, but just try to create some tension in your face and neck.
We'll move onto the chest, shoulders, and back. You're going to take a deep breath and hold it in, and sort of arch your back. This one please do be careful if you have any back issues, but you're sort of puffing out your chest. Then, finally, we're going to do the thighs, calves, and feet. For this one, you can slightly lift your feet off the floor and flex your feet. When you flex your feet, you're pulling your toes back towards you and you can sort of turn them inward.
I really like doing PMR lying flat on your back on the ground, but I recognize you might not all be able to
ground or on a bed, somewhere comfortable. I think that we are just able to relax most deeply in a laying position rather than in the sitting position. When we're sitting, we're still somewhat engaged. We have our core engaged, we can't relax completely.
Let's move into a few minutes of Progressive Muscle Relaxation. I'm going to guide you through it and I'll tell you when it's time to tense and release each muscle group. Again, you're going to start with the arms and hands. I'll actually leave the slides on this screen so that you can be reminded of the positioning. But I'll tell you tense the muscles now and hold it and then I'll say relax. When you relax, you're just going to let those arms drop right down by your sides, or let the face and neck completely go back to the way it used to be when you weren't squinting. So, you'll just follow my cues on that.
Guided Progressive Muscle Relaxation
18:14 Okay, let's begin. Close your eyes and start to bring your awareness to your breath as you inhale and exhale. Begin to bring your awareness to the muscles in your hands, forearms, and biceps. Hold your arms out in front of you with your elbow bent to make an L-shape. Make a fist and tense the muscles now. Squeeze the muscles in your arm. Continue to breathe as you notice the tension building in these muscles. Hold. Tighten. Three, two, one, and relax. Letting all the tension go. Focusing on these muscles as they just relax completely. Noticing the difference between tension and relaxation. Noticing what it feels like as you let all the tension go and relaxation flows into these muscles and just enjoy that feeling of relaxation for a moment.
Now, shift the focus of the muscles to your face and neck. When I say you'll raise your eyebrows, scrunch your nose, pull back the corners of your mouth, gently biting down, and slightly move your chin towards your throat, go ahead and tense these muscles now, squeeze the muscles in your face, neck, and throat. Continue to breathe as you notice the tension building in these muscles. Hold and tighten. Three, two, one, and relax. Letting all the tension go. Focusing on these muscles as they just relax completely. Noticing the difference between tension and relaxation. Noticing what it feels like as you just let all of it go and enjoy this feeling of relaxation as we shift now into the muscles of your chest, back, and shoulders.
When I say you'll squeeze the muscles in your chest, back, and shoulders taking a deep breath and pulling back the shoulders and puffing out the chest now, feel the muscles pull, notice the tension building and rising in these muscles as you continue to breathe. Hold and tighten. Squeeze. Three, two, one, and relax. Letting all the tension go. Focusing on these muscles as they just relax completely. Noticing the difference between tension and relaxation. Let the relaxation flow into these muscles and enjoy this feeling right now as we move into the last muscle group, the thighs, calves, and feet.
Begin to bring your awareness to the muscles in your thighs, calves, and feet. When I say you'll lift your feet slightly off the floor or rest your heels on the floor flexing your toes back and turning your toes inward. Now squeeze the muscles in your thighs, calves, and feet. Continue to breathe as you notice the tension building in these muscles. Hold. Tighten. Three, two, one, and relax. Letting all the tension go. Focusing on these muscles as they just relax completely. Noticing the difference between tension and relaxation. And notice what it feels like as you let all that tension go and relaxation flows into these muscles.
Just enjoy this feeling of relaxation right here right now. You don't have to do anything or be anywhere or change anything. Just be with your body in its relaxed state and know that you can come back here to this feeling whenever you like, wherever you want by just closing your eyes and tensing and releasing your muscles. When you're ready, you can go ahead and start to move your head side to side or back and forth. You can start to shrug your shoulders, wiggle your fingers and toes, and take a deep breath. Opening your eyes feeling relaxed, refreshed, and alert.
Thank you for taking the time to do that with me. I hope that for some of you perhaps it was relaxing. If you have questions about how that went for you, feel free to put it in the chat.
Relaxation exercises, there are several of them. I sort of say it's like a box of chocolates, everyone's going to like different ones. Progressive Muscle Relaxation is a great one, but if it wasn't for you, that's okay, there are several others available. If you liked Progressive Muscle Relaxation, you can find them on the internet, you can find them on YouTube. There are longer ones that walk through seven muscle groups. There are ones that take 30 minutes or an hour to do.
Also, remember that if you noticed while you were doing this that your mind was wandering onto other things, it's hard to focus, that is so common and that does not mean that you were not doing this right. I'd like to say that when our mind wanders you bring it back to what you're focusing on and in doing so you're strengthening that muscle of awareness and mindfulness. Don't berate yourself if you notice that your mind is wandering, just bring it back to the breath, bring it back to the relaxation exercise and then move on. Don't judge yourself or berate yourself. You're only guaranteed to feel worse if you do that.
Action-oriented coping strategies for caregivers.
25:01 Moving on now to coping. This is what I call "active coping." Coping through controllability. We generally think of coping, I don't like to think of coping as, "Oh, I just dealt with it," or, "How did cope with that?" "I just got through it. I figured it out." Actually, coping can be much more of a conscious decision and an engaging process. If we think of it as falling into these two broad categories, action-oriented coping and emotion-oriented coping. Action-oriented coping are strategies that we would like to use when we can identify an action that we can take to resolve a situation or mitigate a situation; whereas emotion-oriented coping, those are skills that are good to use when we can't resolve the situation.
But we have a lot of stress around it and so we say, "what can I do to manage the stress that I feel, the residual effects of this situation that I can't control?" So, let's go through a scenario together. I'm going to use a snowstorm for this because we've all probably experienced this to some degree. Also because, I'm sure we could put lots of things in this box of what the stressor is, but I think this is one that has a little bit less of an emotional balance right now than perhaps the pandemic we're experiencing. I encourage all of you, if you're stressed around COVID-19, this could be another exercise you can do where you substitute COVID-19 for the snowstorm here.
Controllable would be things that you can do to mitigate the effects of the snowstorm, right? You can stock up. You can stay with a friend, closer to work perhaps. You can leave early from work, back in the day when we weren't working from home, to avoid any dangerous conditions on the road. Or you can move your car up the street. There are things you can do to control how you respond to the fact that a snowstorm is coming and that generally weather is out of our control.
But there are still uncontrollable things about the fact that a snowstorm might be coming. The fact that it's coming is uncontrollable, how much snow there will be is uncontrollable? What areas will get hit the hardest? And whether there will be power outages, whether there will be road closures and delays in transportation. These are all things we can't control.
Strategies for managing things you can control, as a caregiver, differ from strategies to deal with those things that are out of your control.
27:33 If we move into caregiving, caring for someone else, and usually people can identify at least a few things that are controllable about the situation. It might mean making joint decisions with the person they're caring for about the treatment. It might mean choosing to stay closer to the hospital during the transplant process. It might mean choosing how you prepare for the person coming home from transplant in terms of how you clean the house. Or do you hire someone to do it? Do you accept support from other people? Those are all controllable.
What might be uncontrollable is the fact that someone you know or love, or are caring for needs a transplant, the fact that there might be ongoing symptoms and risk for physical and emotional sequelae after the transplant process that lasts for quite some time. The overall response to transplant might be uncontrollable. You can see, and I encourage you to fill this chart in yourselves or with the person you're caring for, you can see here that we can definitely identify both controllable and uncontrollable facets of different stressors.
Now, why do we care what's controllable or uncontrollable? Well, because we want to choose the coping strategy that makes the most sense. For things that are controllable, meaning we can do something, we can resolve something, we can mitigate it, we want to use action-oriented coping. What action can I take to resolve the situation? I might be able to make a decision. I might be able to resolve a conflict with somebody. I can seek more information or advice. I can set a goal or checklist or to-do list. I can engage in some problem solving, meaning how do I break things up into smaller and manageable steps? Or I can get help that's much needed.
29:36 What is uncontrollable? Those are things I can't mitigate, I can't resolve, and so I have to turn to my emotion-oriented coping. Those are again strategies to manage the stress that you feel. That means that they're not necessarily going to change the situation, but they're going to change your stress level, your emotional and physical stress level in your body. These are things like engaging in enjoyable activities, perhaps relaxation like we just did, finding some acceptance in a situation, and softening around something instead of resisting it, exercising your physical activity, listening to music or playing music, taking a walk or a bike ride or other exercise, talking to a friend or other types of emotional expression like journaling, and generally trying to change how I think about things or how I react to things.
Emotional coping strategies help deal with things that are beyond your control.
30:30 Emotional-oriented coping strategies, as you've noticed, are very personal. For one person, what's relaxing might not be relaxing for another person. Exercise can be very soothing for some people, while it can have the complete opposite response for others. You have to find what works for you, what emotion-oriented coping strategies work for you. The important thing here is to be able to match the strategy with the controllability of the stressor. If you're finding that you're racking your brain trying to fix something that's unfixable, that's uncontrollable, that's when we sort of have to stop ourselves in our tracks and say, "This is something I can't control so I have to shift into my emotional-oriented coping."
Maybe you're waiting for the results of the test to come back for the person you're caring for and it's stressful, but no matter what, that test isn't going to come back any sooner and you have to wait two or three days for the results. That's a good time for emotion-oriented coping because you're self-soothing and you're managing stress.
Now, if you had a question or a concern about a symptom that the person you're caring for is experiencing, that would be a time for emotional-oriented... I'm sorry, for action-oriented coping because you're trying to get more information or advice. You're asking questions, or you're setting some sort of goal, or you're engaging in problem-solving by talking to the healthcare team. You can see how in each of these is important to identify what I can do about a situation and then, am I using the right coping strategy for that situation?
Self-care is important for caregivers of stem cell transplant recipients
32:09 Finally, I'll move into the end of my talk, which is setting the intention for self-care. I mentioned self-care practices. This is a nice one to do with someone else. We can't break up into small groups in this virtual presentation, but I left it here as a reminder because I do think it's a nice one to do with a partner with one or two other people. It's taking these six steps to figure out how can I re-incorporate something that's meaningful or helpful for me to manage the stress of caregiving.
The first step is identifying what is something I used to like to do. Can I incorporate it back into my life? This third point is one of the most important, do I need to do it differently and how can I be creative about doing it differently?
I'll give you some examples of what I mean by this. What might get in the way of me doing it? How will I overcome that obstacle? Then, making a plan and actually following through with that plan. That's where having another person involved in setting this up can be really helpful because they can help hold us accountable for what we said was our goal. We can check in with them and they can check in with us to see if we actually follow through on the intention that we set.
Think about how you can incorporate activities into your life that you used to do before transplant, that bring you joy.
33:24 In this first example, this was someone I worked with who wanted to get back to the gym. Today, I would say it might not be physically going to the gym but getting back into working out, to being active and getting back into shape. We said, "Can you incorporate this back into your life?" They felt like with all the stresses of caring for their wife and the things that they needed to do on a day-to-day basis, that yes, he felt like he could incorporate it back in, but maybe not physically going to the gym. I would say that that holds true in the context of the pandemic, that we need to be creative.
That brings us to number three, how can I do this differently and be creative? How can he use those environment to take a walk or a jog? Was there equipment that he could get online that he could maybe put in one of the corners of his room or in a garage that he could use to lift some weights, exercise bands. There's lots of ways to be creative about how we can build physical activity back into our lives. Then when asked what may get in the way, he said, "Well, the weather certainly, depending on if it's nice and I should be outside." Also, that he felt like he couldn't leave his wife alone right at that moment, that she needed his attention and care and it was too risky at that moment to leave her by herself.
So, that was another factor that we entertained as what could he do in the house. We said he could have a backup exercise video or something at home that he could do, and he made a plan for that.
When he was going to do it? How long? This plan is so important because it's one thing to just say, "Okay, yeah, I'll do it this week," it's another thing to say, "I'm going to do it on Tuesday at 6 o'clock for 30 minutes. If it's raining outside or if I feel like I can't leave the person I'm caring for it at that time, then here's another way that I can achieve that." There's so many different ways. If we first identify the obstacle that we're having, then we're just more likely to be able to overcome it and to minimize that barrier to what we want to achieve.
One couple who liked to travel did so virtually after transplant.
35:52 In this other example, I love this example and I can't take credit for it, but I put it here because it is maximally creative. What is something I used to like to do? For this couple, it was traveling to new places. They couldn't incorporate it back into their lives at this time, it was because one of the partners was post-transplant and it was not safe for them to be traveling. You could also say that, "Right now, it's not safe for any of us to be traveling."
How can we do this differently and be creative? They came up with this idea of picking a travel show on a country or city that they had wanted to go to and ordering food, ordering takeout from that country's cuisine and having dinner with each other on one night every other week or something and just picking a date night where they watched the travel show on that country and ate that country's food and spent that time together. For them, that was a really creative way of having the time to be together. But also what they were getting out of traveling to new places was having new experiences together and that was a bonding experience for them. So, they were able to get that by doing this modified travel.
What might get in the way? Feeling like they didn't have enough time, and how will they overcome that? They decided to block out the night to get some help to make it happen and they made a plan for that. I gave these two examples because you can say, "How can I do that differently?" Well, I can do it for 10 minutes instead of an hour. It's still at least you're engaged in that activity. Or you can come up with something really creative like this couple and find a way to get something enjoyable out of an activity that you still like to do that you can no longer do in that same way.
Normally, if we were in person, I'd have you do this with a small group. Again, I encourage you to do this with the person that you're caring for, or with someone else in your life who's going to hold you accountable. You can feel free to print this slide, take a screenshot, so that you can fill in each blank. Then make sure that you are really following through. Set that intention to practice the self-care and check in with the person that you identified.
Start by Identifying Your Needs as a Caregiver
38:16 Again, this could be making sure that you get the sleep that you need. It could be setting a time for bed and setting a wake-up time, and getting more regular in your sleep. It could mean figuring out a way to eat a little bit more healthy throughout the week, considering all the demands of caregiving that you're doing. It could mean finding time to sit down and talk with the person you're caring for to figure out your needs and their needs and how do you balance them. I encourage all of you to set an intention for self-care this week and to try to carry it through in the coming weeks.
In summary, I'll wrap up by saying I hope that you feel like either from all three of these or from just one of these tangible skills that you have to apply to try to manage the stress of daily life, the stress of caregiving. Either by relaxation, again there are several different types, making sure that you're coping with by focusing on what you can control rather than what you cannot control. But knowing that what I can't control I can still find a way to soothe around that to manage my stress around it. It's not just that I have to say, "Oh, I can't do anything about that so I'm just going to let it eat away at me." Then, finally, setting that intention for self-care.
Thank you so much for sticking with it. I wish you all improved coping. Being a caregiver is not something that is easy or necessarily comes naturally to us. There are a lot of things that can change over the course of transplant in our relationship with the people that we're caring for. It is not always someone that we have a good relationship with, and so I want to acknowledge that too. That these are complex and new situations and all of you have already found ways to cope, because you're getting through day by day. I just hope that these skills perhaps enhance the way that you've been coping and make it a little bit more of an active experience for you. I'd love to now take questions. Thank you.
Question and Answer Session
40:33 [Moderator] Thank you, Dr. Jacobs. That was an excellent presentation. As a reminder, if anybody in the audience has a question, please type it into the chat box on the left side of your screen. Dr. Jacobs will take questions. Let's see. Our first question is from Susan. Susan wants to know, "What should I expect from a caregiver? What are some of the responsibilities or chores that they may need to help me with?"
41:13 [Dr. Jacobs] This is tricky. This talk is sort of geared towards caregivers who are not paid or hired as caregivers. The question seems to me like it's a bit more towards, if I'm hiring someone to be a caregiver, what should I expect of them? If you're identifying who is going to be your caregiver during the transplant process, and usually the common thing is to have someone who is your primary caregiver, but that is probably a conversation that you would want to have with them around what sorts of things are you asking for help with. That needs to first come from you as the person who is needing help.
What I'll say about this is that there are generally three types of support that we think about. We think about emotional support, things like providing warmth and encouragement, a hug, or lending an ear. In addition to emotional support, there's practical support. Those are things like having someone drive you to an appointment, pick up your groceries, or help you with laundry, or help clean the house. Then there's instrumental support or informational support, which is seeking advice or guidance, things that you'd usually ask the healthcare team or maybe someone who's been through transplant. So, you have your emotional support, your practical support, and your informational support.
First, you have to think about, what do I need? and then, who is best equipped to give me that support? We all have people in our lives who are great to talk to when we need that emotional support. We have other people who might call us up and say, "Oh, do you want to talk?" but really we just need help around the house, or we need help picking up our dry cleaning, or getting the house ready for someone to come home from transplant and being in an immunosuppressed state. It's, first, a matter of figuring out what type of support do you need and then who is the best person to give you that.
Secondly, it's also being able to say to the person who's giving you support, if they're offering a different support than what you need, it's being able to be assertive and say, "I so appreciate you offering to help me make this decision right now. I've actually made the decision with my healthcare team and what I really need is someone to just go for a walk with me or give me a hug because it's a really hard time." I think that goes for caregivers too, that as caregivers people are so often offered many, many different types of support. Family and friends want to help out and sometimes it's overwhelming for the caregivers.
They might have people dropping off meals. I had this, one time, a caregiver I spoke with who said, "Everyone keeps dropping off meals, but I don't eat meat, and so I keep having to throw things away or finding other people who want them. And it's just making my life more difficult." Or, "I don't have room in the freezer and it's just adding another level of stress." So, being able to say to people, "Hey, I so appreciate you doing this, but actually what I could really use is X, Y, Z."
Being able to communicate both as the patient and the caregiver what your needs are and identifying the person who's best equipped to give you that, I think is really important, and being able to have an open and honest conversation around that. I hope that answered the question.
45:12 [Moderator] Great. Okay, the next question, "My husband is a survivor and sometimes appears angry and resentful of my help. What can I do?"
45:25 [Dr. Jacobs] Yeah. I think this happens a lot when relationships evolve during the transplant process or even for any type of caregiving situation. All of a sudden someone becomes the identified patient and the other person becomes the identified caregiver. This is difficult because it puts us in these roles that are very different perhaps than the roles that we functioned in the relationship prior to that diagnosis, prior to that treatment. For spousal relationships, this can be additionally challenging, when someone feels like they're being constantly cared for or they're losing their independence, and that can lead to some irritability and challenges.
One thing that is nice and is a little, I would say for this couple, the most important thing would be communication around what type of help is needed and what type of help is offered, and what is most effective so that the patient doesn't feel like they're being hovered over, that the caregiver also feels like there isn't a concern that if the caregiver isn't there that something will happen to the patient. We need to consider what the needs really are and sort of put ourselves in the other person's shoes.
But one thing I'll say is that I worked with a couple once and we talked about how the woman, who was the caregiver, how she could get some support from her husband, who was the one who had undergone the transplant. It sort of like re-balances, if you will, the dynamic. Support had always flown from her to her husband, as he was a transplant recipient and she was the caregiver. We said, "What thing could you use some help with that he could give to you and that helps re-balance things, so that the support is going both ways?" One person doesn't always feel like they're being taken care of and start to be resentful of that help. So, she was able to think of something that she couldn't do by herself or had trouble doing by herself and he had historically helped her with. It was a way for them to re-balance the relationship, and for her to receive support and for him to feel like he was doing something for her.
I guess to summarize an answer to that person's questions, I think both having a conversation, an open conversation for this couple around, "What feels frustrating when I give you help and what things maybe do you not need help on that I can step back from?" Or, "I hear that you feel like you don't need help, however, I'm concerned about you being able to do this by yourself and here's why." And then I think moving into some strategies for rebalancing how support flows in that relationship could be a nice one as well.
It doesn't have to be something you need help with, right? It can just be, I can do this for myself, but this would be a nice area to say, "Hey, can you do this for me?" and just let it feel good for the other person to give help and support and let yourself feel good about receiving that support. Maybe we can move to the next question.
49:01 [Moderator] Sure. Okay, the next question, "What if you're the only caregiver with very few others to back you up? What could I do to get some extra help?"
49:21 [Dr. Jacobs] This is an area where our resources for caregiving are so specific to the transplant center, to the hospital, to the community we live in. It's sort of hard to say more specifically what resources are available. I do think that one option would be to think about in your community who might have offered you support that you haven't turned to. Sometimes they're neighbors or acquaintances that have sort of said fleetingly, "Oh, let me know if you need help."
People love to help. We all love to help. We just need to know what to do. So, try to first think out of the box that there are people who might have said something that you haven't called on yet. Then also try to think sometimes groups, like community groups, religious groups at churches or temples can often have ways that you can through outreach get like a list going of people who are willing to volunteer and bring over a meal.
There's also a website that helps to organize these things. I think it's called Caring Bridge or something of the sort of thing, if you Google. It's a way for people in your community, friends or family, or neighbors to sign up to do things so you can list on there what help you need. "I need someone to watch my kid for an hour, so I can go pick up medication." Or, "I need someone to help me clean the house." People can sign up for different activities. So, that's another way to reach out to people who might otherwise not be in your circle of close supports.
51:15 [Moderator] Okay. "Is it common for a patient to not be very cognizant of what stress and work it is for their partner to be the caregiver? I'm thinking of all the stress being put on the patient with chemotherapy and the stem cell transplant fog."
51:35 [Dr. Jacobs] Yeah, sure. I think that a lot of people themselves don't realize how stressful it is for someone else to care for them, and then a lot of people also outside of the patient themselves don't realize how much stress might be on the caregiver themselves. I think that's very common. Yes. Also, as the patient, we're going to be fixated on ourselves and our symptoms and recovery; and as the caregiver, you're focused on yourself and on the person you're caring for. So, it's double duty. I think it's very common for there to not be a sort of understanding of how much stress it places, and how much burden, and how much worry and concern, and just how much of a full-time job it is to be a caregiver, let alone feeling emotionally overwhelmed.
I think if people are feeling the stress and the burden isn't appreciated or understood by the person they're caring for, it's nice to maybe have conversations that are sort of facilitated by some online reading. There's a lot of literature now about the stress of caregiving and the rates of anxiety and depression in people who are caregivers in the general cancer population, but also specifically through stem cell transplant.
I think you could start with some reading about, "Hey, there's actually a lot of anxiety and mood difficulties that I'm facing as the person who's caring for you. Can we talk about these?" If you start out with removing yourself from it and just talk about the data that exists and the challenges that we know caregivers are having, and then you move that into a more personal conversation, that might be a nice place to start.
53:47 [Moderator] Okay. "What is a good way to handle friends who inquire about the patient all the time, especially when I'm taking a break and would rather focus on something else?"
54:01 [Dr. Jacobs] Yeah. I think we hear this a lot. This goes back to sort of what I was saying before about people wanting to give support and wanting to offer support, but not always knowing how to do it and what we need. We need to be able to communicate that. This is an area where I would tell this person to try their best to communicate to those friends reflectively by saying, "Hey, I so appreciate you checking in. It's so kind of you to be thinking of us. I know you also care about this person and you genuinely want to know how they're doing. And," I always like using the "and," "and at the same time I'm trying to figure out a way to create space for myself and to make sure that I'm getting the rest and doing the self-care that I need to do to be in the best place possible for myself and this person that I'm caring for." One of the ways I'm doing that is by disconnecting a bit now from my phone or disconnecting a bit from social media.
Then you can decide, "I'll send you a text when there's an important update," or "I'll send out an email blast when there's something that I want to communicate to all friends and family." Sort of like a let me reach out to you. I think you can decide how you best want to do that. And for some people it's going to feel really hard to say that to someone, like you're essentially saying, "Hey, don't text me."
I recognize that that's not always possible to say, but I do think it's important to relay that you are trying to disconnect a little bit from the constant updates. And you then as the caregiver need to figure out how do you want to do the updates so that it respects your personal boundaries and your need for time and space, while also giving other people a little bit of something of what they need to feel connected. And then to also be able to say, "I hear you wanting to see how he's doing, or she's doing, and not only I'll let you know, but also if you want to help, here's one way that you could really help." Because often people just want to help, they don't know how.
56:29 [Moderator] Okay. This will have to be the last question. The question is, "When I'm having a bad day as a caregiver, what's the best way just to get through that day and what, if anything, should I tell the patient?"
56:43 [Dr. Jacobs] I think we all have bad days and the first thing is to just tell yourself that it's okay to have a bad day. That it's okay to worry, or to hurt, or feel pain, or to be in a tough spot. I think we get into traps when we think that we have to feel better, or that we have to cheer up, or we have to be stronger. That just puts more pressure on ourselves and more weight and more burden. So, instead being able to say, "Today is not a good day. Today I feel down. Today I feel anxious."
I like to use something from a type of therapy we do that's called "observe, describe, and participate," which is you're observing your emotions and you're describing them, but you don't have to participate in them. You don't have to try to change them or do anything about them. You can say, "I didn't buy a ticket for that dream." So, being able to acknowledge that, yeah, I feel sad today and it's okay for me to feel sad today, and you know what, it's okay for me to feel sad today and tomorrow. I don't necessarily have to cheer myself up or fix it or find a way to feel better. If weeks go on and you don't feel better, then I would encourage you to seek more support and maybe perhaps talk to a mental health provider. But if you're having a few bad days, the worst we can do is berate ourselves and criticize ourselves for not feeling well.
In terms of the communication, that's personal depending on how the communication has been in the relationship. But I think it's okay to communicate that and to say, "I'm having a difficult day today. I want to still be there for what you need, but I'm also want to let you know that I'm going to be taking a little bit of space for myself." Taking a little bit of space for yourself, whether it's 30 minutes or an hour, shorter or longer, is perfectly reasonable and very important to do. You will be a better caregiver for it. You will also be healthier for it, emotionally and physically. So, I would encourage you to communicate that to the person you're caring for and then also not put pressure on yourself that you have to make yourself feel better or cheer yourself up.
59:15 [Moderator] Well, thank you. On behalf of BMT InfoNet and our partners, thank you, Dr. Jacobs, for a very helpful remarks. And thank you, the audience, for your excellence questions.
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