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The Caregiver Cup Podcast
Empowering caregivers with knowledge, resources and tools so they can be the best they can be. This podcast focuses on ways for the caregiver to reduce stress, burnout, can embrace moments of joy in their new normal. Listen weekly to Cathy's personal experiences, coaching, tips, inspiration, and interviews.
The Caregiver Cup Podcast
Navigating Fear and Uncertainty: How to Embrace Your Emotions as a Caregiver
Fear, worry, and uncertainty often feel like unwelcome yet permanent companions on the caregiving journey. After receiving a heartfelt message from a listener worried about her husband's upcoming bone marrow transplant, I knew this topic needed addressing – not just for her, but for all of us navigating these turbulent emotional waters.
These powerful emotions aren't signs of weakness or failure. They're natural human responses that actually demonstrate how deeply you care for your loved one. The fear of medical unknowns, the worry about what recovery might look like, and the overwhelming sense that no one truly understands what you're going through – these universal caregiver experiences deserve acknowledgment and compassionate attention.
Drawing from my own experiences with my husband Denis's ongoing stem cell transplant journey, I share how quickly the mind can spiral from a minor medical hiccup to worst-case scenarios. This mental pattern isn't unusual; it's your brain's misguided attempt to protect you. The key isn't eliminating these emotions (impossible!) but learning to work with them through practical techniques like mindfulness exercises, creating small pockets of routine, focusing on what you can control, journaling to externalize racing thoughts, and practicing radical self-compassion.
Perhaps most critically, no caregiver should shoulder this emotional burden alone. Whether it's family members taking shifts with your loved one, friends handling practical matters at home, or connecting with fellow caregivers who truly understand your experience, building your support network isn't optional – it's essential. I've learned to be specific about what support looks like for me: not problem-solving but simply listening and asking thoughtful questions.
Remember this: you're making a profound difference every single day, even when you don't feel particularly strong or capable. Your presence matters immensely to your loved one. Take each day one step at a time, fill your own cup when possible, and know that your fear doesn't diminish your strength – it simply reveals the depth of your love.
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Well, hello my friend and welcome to the Caregiver Cup podcast. It's Kathy here. I am so glad you're listening today. This episode today is inspired by a text message I received that I know you can empathize with, relate to and maybe even be experiencing right now. You know what it is. It's all about fear or worry, or uncertainty, or all of the above. It's all about fear or worry, or uncertainty, or all of the above. I personally want to thank this person for sending in this message and if you have a text message you want to send, just go to the show notes and you're going to see text, kathy, and you can click on that and send me a message.
Speaker 1:Here's the message. It says Hi, kathy, my husband is also about to go to get a bone marrow transplant. He is 35 years old and I am 30. I am really struggling with this and feel alone and really like I'm losing hope. Sometimes I am scared of how hard the transplant will be. You that my heart goes out to you, but also I want to commend you for your self-awareness.
Speaker 1:Not many of us caregivers recognize and admit our current situation, our thoughts and our feelings. Also, it is very common for caregivers to feel overwhelmed when their loved one is about to go through something as intense as a bone marrow transplant. It is a huge process. There are many unknowns and your family and friends really don't understand your thoughts and feelings totally and the role of the caregiver. So today I want to share my journey and experiences and how I managed fear, worry and uncertainty during challenging caregiver moments and really how I'm experiencing them again right now, and hopefully by me sharing some of this, it will help the person that sent in this text and all of us listening today. So let's dive in a bit deeper now to why these emotions of fear, worry and uncertainty come up in the first place. I think we can all agree that they're a natural part of caregiving experiences, but it helps to understand why they arise and then, once we can understand the whys, we can get into it a little bit deeper.
Speaker 1:First, at the core of it. A lot of these feelings are rooted in the unknowns. When you're facing something like a bone marrow transplant, something so big and life-altering, it's only human to fear what's ahead. You might be worried about your loved one's safety or their health, about how their body will react, or even about what life will be like on the other side of the procedure, and even me, I experienced that when we drove down. I'm thinking okay, what is it going to be like to drive home when this is all done?
Speaker 1:The fear of the unknown is a huge source of stress for caregiver. And, first of all, it's completely valid. The uncertainty that surrounds us only intensifies the fear. As caregivers, we often have very little control over the medical outcomes. Sure, we can manage appointments and offer support and stay as present as possible, but when it comes to the actual recovery or how a procedure will unfold, we have no way of knowing what will happen next, and the lack of control can leave us feeling helpless and increase the worry even more. And just as a side note to the person listening to, when you see your loved one looking different or feeling different, it sends a flag in your head and you start to worry and fear even more. And so I'm just giving you that heads up that sometimes the outlook of something just triggers it. So now let's talk about common triggers for these feelings.
Speaker 1:First, there's the obvious anticipating medical procedures, no matter what the procedure is, when your loved one is about to undergo a major medical treatment, like a bone marrow transplant, a surgery, whatever chemotherapy, whatever it is, the fear of the unknown grows exponentially. You may be constantly wondering how the procedure will affect them, how their body will handle it, what recovery will look like. It's normal to have that uncertainty. It's the part of the process, but it doesn't make it easier to navigate. Then there's the emotional and physical toll. Caregiving takes on you, the caregiver. Sometimes we forget that we are also deeply impacted by the process between managing the logistics of appointments, taking on emotional weight of supporting your loved one and juggling your own life. It's exhausting. It can take a huge toll on your mental health, your emotional health, your physical health, really your overall well-being. This all adds to the fear and worry, because now not only are you concerned about your loved one, but you're also feeling the strain of doing everything yourself. And I laugh today because life is just kind of it kind of crumbled today and I'm worrying about my home life and the silly air conditioning and all these kind of things.
Speaker 1:And I think this next trigger is something that's hard for people to talk about and that's a feeling of isolation. It's easy to feel alone in this journey, even when you're surrounded by tons of people, especially when no one around you fully understands what you're going through. They can say things like take care of yourself, and you're like, okay, yeah, how do you do that Really when I'm trying to take care of myself physically? But these mental things are getting in my way and it's normal.
Speaker 1:Sometimes it feels like no one can truly grasp the weight of what caregiving really involves. You might feel like you're holding it all together, but in the quiet moments it can be so overwhelming. You may want to reach out to someone, but you don't know who to turn to, or maybe they just don't get it in the way you need them to. For me, especially during Dennis's transplant, I really felt the weight of fear and uncertainty. It's good to be informed and an advocate it really is. But knowledge can also amplify the worry and I'm going to just kind of explain that.
Speaker 1:Most caregivers now have access at an instant to apps and information online, like their lab results, the doctor's notes, and for me, I love that because I can go in and see what his platelet counts are, his white blood cell counts are his weight, is his blood pressure, is what the doctor's prescribing. But when you get into it so much, and what happens then is. You start obsessing over it, thinking, oh my gosh, his count went down again, or this one's too high. And then you start, for me, down again, or this one's too high. And then you start, for me, I start obsessing over it, and the uncertainty and the worry become paralyzing and you start thinking, oh my God, what if this happens? What if it's affecting their liver now and their liver's impacted by it? And so, for me, I've had to learn to say, okay, I understand what the facts are. Now I need to ask questions versus asking AI or Google and seeing what the worst are.
Speaker 1:But all of these triggers that we have, whether they're the good or the bad or the ugly, all of these triggers fear of the unknown, the emotional toll and the isolation are incredibly common. And I want to tell you you're not alone in feeling them as caregivers. We all feel them. It's important to acknowledge them so we can start to move forward and manage them, and I'm going to get into some examples today, and I've had to do this myself and I'll get into it in just a bit a little deeper. But I've had to ask myself what is the truth? Is it, you know, like if I was Googling? You know, his uric acid was out of control and I'm concerned that it's going to affect his kidneys Well. And so I start obsessing about that versus. Is it truly true? Is it just a fluke that azuric acid is off, or can they adjust some other medication and it gets back on normal? I have to pull myself out of that frightful worrying.
Speaker 1:So let's talk about now, about identifying these emotions of fear, worry and uncertainty, and let's dive into the fact that we want to embrace them, and why and I want to start by validating something really important it's absolutely okay to feel scared, worried and uncertain, especially when you're a caregiver. These emotions are normal human responses and they are a sign that you care deeply about your loved one, and so I want you to go ahead and not obsess that oh my God, I'm just a worry or all that. I want you to embrace it first. In fact, as I read through the message from one of our listeners that I just read remember the one I just read I couldn't help but feel a sense of gratitude for her courage in being self-aware, and I'm assuming it's a she, so if it's a he, I apologize, but remember she said I'm struggling with this and feel alone and I'm losing hope. Sometimes I'm scared of how hard the transplant will be, that you are self-aware and I want to say thank you for sending this. First of all, I truly commend you for being so open, aware of the emotions.
Speaker 1:Like I said, so many caregivers suppress these feelings or feel guilty about them, but by acknowledging them, you're taking the first important step towards managing them. You are doing exactly what you need to do right now, recognizing the fear and uncertainty that they're part of this journey, not something to hide from. You definitely have a right to be nervous and fearful and worried, and Dennis and I my husband Dennis and I we've had a lot of discussions about this and saying, yeah, we're both worried about it, and then we talk through those. Now here's the thing when you try to push those feelings aside or suppress them, they don't just disappear. In fact, they often grow stronger.
Speaker 1:For me, during Dennis's transplant, I found myself going into this busy mode and staying so busy, keeping myself constantly occupied, whether it was keeping up with medical details, running errands or simply being on the go. It was my way of suppressing my fear sometimes. But guess what? All that does is make the fear. All that does is just keeping that. And that fear didn't go away. In fact, it just made me feel more disconnected from my feelings and eventually it came rushing back in more intense ways. And so I learned the hard way that I can't ignore these emotions and the flip side. It's kind of like a teeter-totter. You know how the teeter-totter goes up and down on each side. You can't ignore them, but you can't obsess over them. Either you have to find that balance or else, if you do, they amplify. So here's my advice I want to share Opening up about your emotions, even when they seem overwhelming, can help you just stay grounded.
Speaker 1:It's not easy, and in those early days of caregiving I didn't always know how to express my fear. But when I did take a moment to sit with myself and acknowledge them and how scared I was, it gave me a sense of clarity and I looked at the positive side of okay, I'm nervous and I'm scared for myself, but also for my loved one, and I had to embrace that in supporting Dennis but also taking care of myself as well, because I couldn't let that let me hit rock bottom. I couldn't let that be my only emotions and thoughts. So I just needed a little water here.
Speaker 1:I want to encourage you to stop feeling guilty about your fear. First of all, you're not weak. You're definitely not failing your loved one. Feeling scared doesn't mean you're not strong. It's part of the process. Embracing those feelings instead of running from them helps you process them. A good way to process for me is journaling them out, and journaling out my fears and why I feel this way, and then sometimes I will even go as far as is it truth or is it not true? You know, because sometimes I would obsess so much over the worry I'm worried that he's not going to ever go home. Well, I don't know that it's probably a lie. He's going to get to go home. Obviously, some things may delay it, but there's going to be some things we're going to be able to celebrate.
Speaker 1:So to anyone listening today, especially that person that sent in the text who might feel like the weight of the emotion is impacting them, remember it's okay to feel the way you do. It doesn't take away from your strength. It simply makes you human. And if you talk to somebody and you tell them you're so worried and they said stop worrying, then that's not the right person to talk to. That person should let you acknowledge the worry and then talk about it, and talk about what's a good thing to worry about and what's something. Maybe you should put the worry dial on low. You're doing your best and that's okay, so I wanted you to do that. So let's talk about understanding fear and worry a little bit more. Let's take a moment to really understand the impact that fear and worry can have on you as a caregiver Really one of the biggest challenges I see and we face in this fear, or this cloud of fear and judgment.
Speaker 1:When we're overwhelmed, it can become hard to see through clearly. Think of it as a cloudy fear and most of the best decisions for our loved one and for ourselves. So our minds can start to spiral ourselves. So our minds can start to spiral and instead of being present in the moment, we end up consumed with the what ifs and the worst case scenarios. Oh my gosh.
Speaker 1:I was there again this morning. Dennis went to his weekly checkup and he had his labs and he had his physician's assistant appointment and his diarrhea and GI problems are not going away and she had said that she needs to talk to our doctor, who is traveling today but we'll be back tomorrow. But she said, if I can get him on the phone today, we're going to go ahead and talk more. But theyaring or their thinking that it's either the medication one of his meds is causing the allergic reaction of all the diarrhea or he has GVHD and in order to do that they're going to have to do a colonoscopy. And in order to expedite the colonoscopy he has to go back inpatient. Well, first of all, let's get through the first step, kathy of let's get off the meds and see if the multiple bouts of diarrhea go away right, and then, if that doesn't go away, then he has to go inpatient for colonoscopy.
Speaker 1:Versus me, I was already at inpatient GVHD and the stem cell transplants of failure and I was in that spiral within five minutes. Within five minutes. So I think it's normal human response. Our brain's trying to protect us, but it's a normal human response At that moment. Think about it. What if the transplant didn't work? What if I lose him? That might be another one? What will I do without him? We get those fears and we get those worries right away.
Speaker 1:I started researching hospitals right away when I heard this. I started researching drugs. I started researching other treatments, anything to try and prepare myself for the worst. And it's like why am I doing this? Why does my brain automatically go that way? But it is, it's normal. And let me tell you, my mind was completely out of control. I wasn't being rational. I was being consumed by fear of an outcome that wasn't even reality. It may be something, but I don't think we're ready to go there yet.
Speaker 1:What I had to do in my situation was what we need to do when we find ourselves overthinking is pull it back. Pull it back. And it reminds me of a smoker wanting to have a cigarette and that hit of that nicotine that they want is there. And I had to stop myself and ask is leaning all the way to the worst case scenario. The truth, and is this helpful for me right now? And the answer was no. It wasn't true. We don't even know the cause yet and it definitely wasn't healthy for me. I have to be patient and follow the steps.
Speaker 1:I had to bring myself back to the present and saying, okay, we're going to get off the meds for a couple of days and track the diarrhea and if it's improving, then it's the medicine, because he's taking like four pills. I don't even know what the milligrams are, but he's taking four pills in the morning and four pills in the evening, and so it's not like it's just a one pill thing. It's a massive dose in the morning and a massive dose in the afternoon, and if there's an allergic reaction, well yeah, it's going to get into your body system and be constant all the time. So, instead of doing that this is something I have had to learn over time but my mind continues to go there. I have to just accept my mind will go there, but I have to go ahead and tell myself.
Speaker 1:Fear often wants to protect you. It tries to prepare you for the worst, but it is not actually helping you cope with the present situation. It can distract you from what's truly happening. Anybody that I talk to, I tell them this. I tell them my brain will automatically do this. So this is what I need you to do to say Kathy, is this truly true? What are the steps before that? Before you let your mind go there and it can cloud my judgment, it can make it harder to take rational steps forward and it whacks out I don't know how else to say it, it whacks out my nervous system. It just whacks it out the key to recognizing fear, like I said, is a natural response. It's a response to your love, to caring so deeply about someone that the thought of losing them or not being able to protect them feels like an unbearable weight. In my case, I love Dennis so much that my mind wanted to anticipate every possible negative outcome in an effort to protect him and myself. But the truth is, the kind of overthinking wasn't helping me and it wasn't helping Dennis either. We'll take this one step at a time. Let's not jump to the worst possible scenario. Instead, know the worst possible scenario Instead.
Speaker 1:Fear can be a reminder of the strength of your bond with your loved one. It shows just how deeply you care. But it also is important to acknowledge when the fear starts to take over in an unhealthy way. When we get caught up in it, we lose sight of what's happening right in front of us and we start making decisions based on what we fear rather than what actually are true. Think about it as a new mom, and a new mom is worried their toddler might run into the street, and so they get this fear so early and they're sitting in their driveway and the child's doing chalk on the driveway, or they may be playing with a toy and the mom is so paralyzed that they don't even want their child in the front yard because they're afraid of what that outcome could be when their child hasn't even gotten close to the street. It's almost like that they don't even want their child outside because they're fearful of it and it's robbing her of the joy of the moments. So I want you to take a moment to reflect. When you start feeling overwhelmed by fear, ask yourself this is this fear based on the reality of my situation or am I getting caught up in a worst case scenario that hasn't even happened yet? You know, dennis's doctor in Green Bay, dr Godham, said to me when I was worried about this next step and we weren't even driving down for his stem cell transplant. He said when fear hits, I want you to hold your heart and trust in God. Don't let your mind race. You just have to trust the process one step at a time. You just have to trust the process one step at a time, and that hit home for me and maybe it'll hit home for you. Okay, let's talk about now managing fear, worry and uncertainty.
Speaker 1:As caregivers, we know all too well that the stress is a constant companion. It's our pocket buddy, it's our stress on the shoulder, whatever you want to call it. In tough and challenging seasons, especially when it feels like everything is spiraling out of control, it can be really hard to manage that stress. The truth is, you can't get rid of the stress and those overwhelming feelings, especially in a challenging situation or a challenging season. They're going to show up and they're going to keep coming. I'm sorry, that's usually what happens, but here's what I've learned over time. It's not about eliminating your emotions. It's about working with them and working with them and not sweeping them underneath the rug, not letting them bubble up altogether, but just working through them.
Speaker 1:When I was deep in the trenches and I still am with Dennis's transplant journey, I've always tried to push away the stress, the fear and the worry. I can do this, we'll get through this, but that didn't work. In fact, it just makes everything feel bigger and harder, because if you just keep pushing it back, it's eventually going to all come forward. What helped me? Learning to work with my stress and not against it? I had to experiment with different techniques in finding what's worked for me in those high stress moments, and I want to encourage you to do the same. What I'm trying to get at is one size doesn't fit all, so if I tell you, oh yeah, I pray and I journal, that might not work for everybody, but I'm going to give you some examples and some practices that you're going to want to see what works and then which ones work, keep them at top of mind and start trying different things.
Speaker 1:Now, one thing that you want to think about is mindfulness and grounding techniques Things that you can do just in time, or things that you want to think about is mindfulness and grounding techniques things that you can do just in time, or things that you can do after a rough period or before something stressful happens. Mindfulness was one of the tools that really has helped me. It's about being present and paying attention to the moment, even when your mind wants to run away with fear and worry. Let's say, you go into the hospital or you go into his appointment and you see that he's really really sick, and you can see that because Dennis looks a little bit yellow or gray, that because Dennis looks a little bit yellow or gray, and when you see him sleeping and his body tried to heal, it doesn't make you feel really good, but you want to think about. Mindfulness helps you slow down that mental spiral that your brain wants to go through and pulls you back to the now. They are, excuse me, they are simple techniques you can try, like right away.
Speaker 1:One is deep breathing. A few slow, deep breaths can reset your nervous system, especially when you heard bad news or especially when you're waiting on results or it's been a really rough day. You can do it in the car, you can do it sitting down, you can do it while you're taking a shower, you can do it anywhere, and it helps you calm down in stressful moments. So, taking a deep breath in holding it and then take blowing out the breath, it's a quick way to regain your sense of control and that might help you. Another one is to take I call it, a body scan. You lay down I usually lay down on a yoga mat or laying down on a bed and you focus on the parts of your body starting from your toes and going up to your head. When you're laying down, I feel my feet, I feel my shins, I feel my calves, my knees, whatever, and you work your way up the body and this helps you tune into your physical sensations of your body and it releases built up tension.
Speaker 1:Another one is focusing on the senses. Pause and really notice what you see, what you hear, what you smell, and focusing on all of those. This can ground you in your mind from wandering in overwhelming situations. I've done this where I went for a walk, like I had to just get out of the hospital room or get out of our hospital housing and I'd go for a walk. But focus on something. Look for hearts Maybe there's heart-shaped leaves or look at the rocks on the ground. Or look at the clouds and see if it's a cloudy day. Look and see if you can see any pictures in the clouds or formations in the clouds, or maybe you smell the fresh air or listen for the birds, whatever. Focus on a sense that will help you. And then I talked about walking, but mindful walking. It can really help. Taking a short walk and focusing on your steps. With each step, remind yourself you're right here right now. You're doing the best you can and focusing on that. So that's mindfulness.
Speaker 1:Another one is creating a daily routine. Depending on your season, this routine is going to look different. When everything feels uncertain, having a routine can create some stability. It doesn't have to be a rigid schedule, but small, manageable tasks each day can make a difference. For example, start your day with a morning practice, setting aside a time where you walk, or you take a few minutes to journal or do some self-care. Maybe you get up and you stretch and drink a glass of water before you start this hard day, or you just check in with a support system. Maybe you have a friend that you can. While you're putting on your makeup or brushing your teeth or whatever you're doing in the morning, you talk to somebody in the morning. These things add up when life feels like it's spinning. Routine brings a sense of order. Or maybe it's your nighttime routine, maybe, where you do something so that you can wind down, so that you don't let your mind go. Maybe you journal gratitude before you go to bed, or maybe you listen to some soothing music or do meditation. Just try a small pocket and don't make it something that you don't need another thing on your to-do list but just something you can do.
Speaker 1:Another practice is focusing on what you can control. This is a good one, because you can do this during your walk, you can do this in your journaling, but a big part of managing stress is shifting your focus away from what's out of control. It's so easy to get stuck in the unknowns, especially when you're waiting on your loved one to go through something complex such as a bone marrow transplant. By focusing on what you can control is key. For me, it was staying focused on the daily tasks that were in hand Supporting Dennis in his recovery. Right now he's doing small little walks around the Kathy's House hospital house that we're at, and so I'm making sure that he's taking small little walks or making sure that he's drinking his water. It could be keeping in touch with a support network. It all helped me regain a sense of agency or control too, and when I'm focusing on something out of my control, it's almost like I have to just stop, acknowledge it and say, nope, I'm only going to focus on what I need to control. It almost reminds me of you could even do this. You could draw a circle on your piece of paper and the things within your control are in the inside of the circle. The things on the outside of your control are the things that you can't control, or outside of the circle of things you can control, and what you could do is you could take a scissors and then cut the circle and the outside would be stuff you would toss away Just thinking about that.
Speaker 1:Another one I just talked about is journaling and self-reflecting. Writing down your thoughts and your feelings can really help you release some of the anxiety that builds up, getting them out of your head. Journaling often offers a space to process your emotions, get them out of your head and reflect on what's really happening. Even just taking five minutes of each day to jot down what you're feeling whether it's gratitude, frustration, fear can give you some much needed clarity. Now, when you start saying I'm fearful or I'm worried, I want you to be specific what are you worried about? And if I was coaching you, I would say why? Why are you worried about the white blood cell counts? Or why are you worried about what's going to happen in the future? And I'm not saying it's bad. And then, what are you worried about when it comes to the future? So yeah, it could be financial, it could be work-related, it could be. Will my partner ever be the same again? That kind of thing? Remind yourself. You need this much needed clarity and you need a space to release it, and it might be something that you continually work on. Another one, and a really important one, is self-compassion and grace. I want to remind you to be kind to yourself.
Speaker 1:Caregiving is not easy and it's okay to feel overwhelmed, stressed and unsure, especially when you don't know the process. You don't know what the future will hold. There will be days when you don't feel strong, and that's all right. You might just have to thrive that day or survive that day. It's normal to have those moments and be okay with it. I was that way last week. I wasn't okay. If you didn't listen to last week's podcast, I wasn't okay. What's important is that you show up and you show up to yourself with grace. You're doing the best you can. You've never been in this territory before and that's okay and that's enough. Right now, you're doing the best you can.
Speaker 1:Give yourself permission to not have all the answers, to not be able to do it all, and to take breaks when you need them. You can't keep going like you normally would go through. Before caregiving, I used to beat myself up saying why don't I have the energy? Why can't I do the same things that? I used to beat myself up saying why don't I have the energy? Why can't I do the same things that I used to do and I have this time on my hands. The emotional and physical toll that caregiving takes on your body is enormous. You're not failing. If you don't have it all figured out. You're human. Maybe you write that down. You're a caregiver and you're doing an incredible job, even if you don't Don't always feel the way. If you're showing up, that's what you need to do. If you're asking questions, that's what you need to do. If you feel out of control, allow yourself to feel that way and saying, okay, I can take baby steps to kind of ground myself, and it's a bad day and that's okay. So now what you want to do is build emotional resilience, and this is what you're doing when you're doing some of these practices.
Speaker 1:One of the most important things I've learned throughout my caregiving journey is the power of support. When you're in the thick of this tough season like this one with I'm going through with Dennis in his stem cell transplant, having a support system isn't just helpful, it's absolutely necessary. It's so easy to think that we have to do everything ourself, but the truth is, trying to carry the emotional burden alone is so much harder to cope with. Yeah, the weight of the stress, the weight of the fear, the weight of the worry can quickly overwhelm you, but when you have people to lean on, even just knowing that someone is there, someone who truly understands, can make a huge difference. Now it could be professional counseling or therapy, or it could be just help with the physical things.
Speaker 1:I want to go into and talk about some of the support systems that have been absolutely essential in this tough season I'm going through Right now, as Dennis is going through his transplant journey. I'm surrounded by a solid support network that brings grateful tears to my eyes that are helping me carry all of the things that I need to carry Emotional loads to physical loads, to everything in between. So here are some of my examples I have, since I cannot be home and Dennis cannot be home. They're saying maybe between day 90 and 100, he can go home and he's on day 33. Right now I need somebody watching my dogs. I have two beautiful. They're my kids, my fur babies, and the home care. One of the things that I'm most grateful for is having all of the help that I have that are watching Lucy and Eddie and being cared for.
Speaker 1:So I had to create a calendar I had to reach out to family and friends and neighbors and everybody, and I had to create, you know, a step, action, little guide on how to take care of my dogs and my home and my crazy air conditioning that still isn't fixed and all of these things that have to be done at home. And so I have people at my house that are doing that. I created this private Facebook group. I just couldn't find anything else that I liked. So I created a private Facebook group that was only open to family and friends, that I give updates to dentists on, but in return, I have emotional support. In return, I have emotional support. I have people that are sending, that are posting quotes for the day, that are reaching out to me, that are sending cards to dentists, that are sending gifts. All of that involved. These people, if I say I need help with this, they band together and figure it out, and it keeps me away from these burdening constant calls or texts that people would send me to say how's Dennis doing, how's this doing? No, if they're a close family and friend, I will go ahead and add them to the group and we post daily or every other day on his updates, which is really nice Now there have been times where I needed help, where I needed to be home to meet the air conditioning repairman, or I had a personal appointment that I needed to go through.
Speaker 1:So I have family and friends that will take Dennis to the appointments or stay at Kathy's house as well, and this has been so nice. When we come home too, we'll open that up too, where, if there's a conflict, people can help with transportations or appointments, or maybe if it was a really tough time at the hospital which I haven't had yet, but I know that I'd have extra support with me if I need extra support. Another one is calls with a personal friend or family member that can help you through some of the struggles, and mine has been. I call my sister twice a week, and my sister has been my rock during this time. We talk nearly two to three times a week, sometimes just to check in, sometimes to vent, sometimes I just want to know what's happening with her, so I don't have to just be wrapped up in this world. These calls are my lifeline. They remind me that I'm not alone in this journey. Whether I'm feeling overwhelmed or just need someone to hear me, my sister supports me and keeps me grounded and she knows what questions to ask me. I have other people as well that I can lean into too. Another thing is look at the support groups while you're at the facility or during the process. There's a transplant support group at Frader that I, other caregivers and you get to hear their stories and they get to hear your stories and it's incredibly validating about being in a space with others who get it and you can talk about it and if you like that aspect, you go through that aspect together and you have a supporting piece there.
Speaker 1:I also have been really thinking about this too the Kathy's house, which is the hospital house we're staying at. Yes, it's Kathy, but this one is Kathy with a K. If you ever want to see what it looks like, it's Kathy's house in Milwaukee, wisconsin, and what they do is they have volunteers that come in and serve free meals a few times a month and I've been taking advantage of the free meals from the volunteers. It's a night that I don't have to cook for myself, or a night I don't have to cook for Dennis, and it's just brings this community of people staying here together. So if you're running on empty from a food perspective or a physical perspective, or you need that emotional support.
Speaker 1:This is one way that I have found, too, and so I want to get back to building your community. I want you to really think about when things are really tough, especially the person that sent in this text. Do you have a family or do you have a community that you're building? Not everyone has family members or close friends nearby. That can make caregiving even more and it can make caregiving even more isolated. But what is your community? Do you have co-workers? Do you have friends? You want to think about that so that you can go ahead and start building your community. Also, look at the ask about this, because when Dennis went through his initial planning, I asked about any type of support system social workers, psychologists that can help you through some of those challenging times as well. Look at online groups online that maybe there's a I know there's a bone marrow support group online that you can kind of look at and read and maybe even ask questions. There might be even local support groups, and obviously this podcast is a nice way, but there's other podcasts that you can go ahead and do, and it might be helpful for you to walk and listen to something too, and it might be helpful for you to walk and listen to something too. So building a community around you doesn't really happen overnight, but it's worth the effort, whether it's leaning into family, seeking support from fellow caregivers or finding professional help.
Speaker 1:You don't have to carry all this emotional weight of caregiving alone. You don't have to carry all this emotional weight of caregiving alone. Mention it to the team of medical professionals to say are there anything available from a caregiving perspective, or where can I go to ask my questions because I'm feeling uncertain about some things going forward. And if you're the type of person that needs to know the process, well then tell them that I can honestly say that having my support system has made all the difference in how I'm coping with the journey. And if you're feeling isolated, please remember you're not alone in this. Reach out, lean into support system. Allow others to help carry some of that emotional load for you. Maybe it's a friend that you're saying I'm going to need you to go ahead and help me through this season and you tell them I don't need you to fix it, because I had to tell my sister, connie, that you can't fix it, but what I need you to do is listen and then ask me good questions, and it's okay if I'm frustrated and I'm just having a crappy mindset by you just listening. It just helps me release some of that. So, in conclusion, today I know this has been a long one, but hopefully this has helped you and we're wrapping up I want to leave you with some key takeaways and kind of put the ribbon around everything.
Speaker 1:First and foremost, fear and worry are normal, especially in the face of caregiving challenges. These emotions don't make you weak or incapable. They make you human, and you're going to look back at this and you're going to see how much you've grown, how much you've learned about yourself. It's okay to feel them, it's okay not to have all the answers right now and it's okay to take a step back when things are overwhelming. The key is learning to embrace those emotions without judgment. Don't beat yourself up, don't self-talk yourself, don't push them away or try to suppress them. Instead, try practices that work for you, like mindfulness or journaling or self-compassion, to help manage yours. Maybe yours is prayer, maybe yours is something different. I just gave you a few tools, but any tools that can help you stay present, grounded and connected to yourself.
Speaker 1:Remember, building emotional resilience isn't just about toughing it out alone. It requires support, and it starts with being kind to yourself. You cannot pour from an empty cup, so taking care of yourself is the first step in being the best caregiver you can be for your loved one. I want to encourage you. If you're feeling afraid, if you're feeling overwhelmed or uncertain, know that you are not alone. These feelings are part of the journey and it's okay to feel vulnerable and seek support. The support might be the nurse in the room that you're saying when you're walking out. Can I quickly talk to you? Is there any suggestions you have for financial support? Or, if there's any suggestions you have for all of my questions, do you have a document that I could look at online? Fear doesn't take away from your strength as a caregiver. It's simply a reminder of how much you care and how deeply you love.
Speaker 1:Before I leave, I'd love to hear from you. I want you to grab that text below. I know that sharing your experiences can be a powerful way to connect. I want to hear how you're managing your fear and worry. Click that link that says text Kathy, and share your story. What fears are you carrying and how are you managing them. Whether it's something big or small, your experience could help somebody else and I could share those in the next episode.
Speaker 1:So, to conclude here, I want to thank you for being here. You are doing an incredible job and remember, you can do this. You can do it one step at a time and if you have to take a step back tomorrow, remember the following day can be a step forward. But even if you don't always feel like you do, you're still making a difference. You're making a difference in every single day. You're helping your loved one through this challenging time. But what you have to remember is you have to keep your cup full. You have to keep filling your cup so that you can show up as the best self that you can be each and every day. So have a good rest of the day, my friend, and we'll see you again next week. Bye for now.