The Caregiver Cup Podcast

Overcoming Waiting Room Fatigue: Self-Care and Coping Strategies for Caregivers

• Cathy VandenHeuvel • Episode 238

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Waiting room fatigue is a struggle many caregivers face but rarely discuss. Imagine sitting in a hospital waiting room for hours, filled with anxiety and anticipation, as your loved one undergoes medical procedures. This episode unpacks how these long waits can lead to emotional and physical exhaustion for caregivers, like me, waiting for Denis during his needle biopsy and chemotherapy port installation. We dive into the emotional tension and lack of control that exacerbate this fatigue and explore how recognizing these feelings is crucial for maintaining our well-being.

Discover practical strategies to alleviate this caregiver fatigue with our engaging discussion on self-care routines and stress management. From deep breathing exercises to mini meditation sessions, I share personal tips that have helped conserve energy and stay present for Denis. Learn how to transform waiting room time into moments of personal growth and creativity, with activities like journaling, knitting, or even listening to enriching audiobooks and podcasts. Combatting fatigue isn't just about self-care—it’s about staying productive and connected, and I provide actionable advice for doing just that.

Don’t miss our roundup of strategies for surviving waiting rooms, including planning relaxation rituals for after appointments and proactive communication with medical staff to manage wait time expectations. You’ll hear about my personal experiments with games and creative outlets, like using dry-erase markers for artistic expression on hospital windows. Plus, look forward to our upcoming interview with Cathie, a fellow caregiver and listener, who will share her experiences and insights on maintaining resilience. Remember, our weekly caregiver newsletter is here to support you with tips, stories, and inspiration to help navigate these challenging times.

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Speaker 1:

Well, hello, my friend, and welcome to another episode of the Caregiver Cup podcast. It's Kathy here. Hey, I am so glad you're joining me today on this topic because I want to ask you this question Do you feel drained or ever wonder why you feel drained when you're sitting in a waiting room, you're taking your loved ones to appointments, and you just feel sluggish, you're drained, you don't feel like doing anything after you're done and you just sit there. Well, last week was the week that I remembered all of those appointments and the draining and I almost feel like I'm almost ashamed because I feel lazy, because you just sit there and, with all of the anxiety and the stress and the boredom, it just builds on you and you just feel like you need a kick in the butt. Well, let me explain a little bit about last week.

Speaker 1:

Last week, monday, dennis had his needle biopsy and his chemotherapy port installed and it's under the skin on his chest, and so, instead of poking him in the vein every time, they insert a port in your chest and it's a lot easier on the person and the veins don't, you know, rupture or get weak or anything like that. I was in this 10 by 10 room and they keep them there for this before the surgery and then they bring them back after the surgery. It's no windows, it's 10 by 10. You get this little TV on an arm up in the corner of the room and there's a sink. We had the luxury of having a restroom in there, so that was really nice. But there is no interaction. And so I came prepared with my laptop and my journal, thinking I could keep myself busy. But I had a tough time focusing on anything and it's funny, you kind of forget about it and then it comes back again and it's all that stress and anxiety while you're waiting for your loved one to get through surgery because he was running late and I thought something was wrong, but no, it was just. You know the time it took for the thing.

Speaker 1:

Then on Wednesday we had to drive from Green Bay to Milwaukee. I live in the southern part of Green Bay, so Green Bay to Milwaukee, which takes about two hours. So we drive down to Milwaukee Freighter Hospital for his stem cell oncology, consult the doctor that did his own stem cell transplant the last time we went and consulted with him. So we're in the car for two hours. Then we get into the cancer clinic and we have to sit and wait for the blood to be drawn. Then the blood is drawn, then we get up and move down the hall and wait for the doctor's appointment and you just sit and wait and you wait and you wait. At least the waiting room that we were in had rocking chairs with a big window. Dennis wanted to go ahead and sit interior and I'm like, no, we're going to go and sit and look at the windows. We waited there. And then we get called in and then you wait in this little I think this room was smaller, maybe eight by eight room and we just sit in there and wait and wait and wait and you go stir crazy.

Speaker 1:

Well then on Thursday he had his oncology follow up where he had more labs drawn. So you wait for the labs to be drawn. Then you go ahead and move up to the second floor, you check in there and you wait for them to call you for the doctor's appointment. And you wait for them to call you for the doctor's appointment. He gets his vitals taken and then we wait in this small room again, and I actually by the end of the week. This is how my brain works. I tallied up all of the hours that we spent in waiting rooms or those small little exam rooms, and it was nine hours. For me, that wasn't even the two hours drive there and the two hour drive back, so it was nine hours of waiting. And in my watch I have an Apple watch and my watch kept telling me after a while don't forget to stand up. You need your stand up goal this week. And so I find myself just kind of marching in place or walking a little bit in the waiting room to get movement on.

Speaker 1:

But let's talk about this Waiting room fatigue. It's real and it's more than just time spent in a chair. It's between the anxiety and the boredom and the constant environmental stressors. Caregivers face a distinct kind of exhaustion in these medical settings and I can't even think about your loved one and how they feel as well. But as caregivers we accompany our loved ones to their appointments, to their therapies, to their checkups, all while balancing our personal lives and our responsibilities. And so we have to go ahead and, you know, rush and get them there, and then we have to stop and wait, and then we kind of move forward. So I want to break down the whys, the symptoms, and try to gain understanding of this waiting room fatigue. Now, I googled it. Some people call it appointment fatigue, but I truly, as caregivers, call it this waiting room.

Speaker 1:

Let's face it, sitting in a waiting room can be exhausting, both mentally and physical, and think about it. You feel drained from the stress, the anxiety and the endless waiting. But what if you could turn that time into small moments of care for yourself? And so that's why I want to understand this. As caregivers, we have this for many reasons, and let me just break down the many reasons. Emotional tension is the first one that comes to my mind.

Speaker 1:

Waiting often means we're anticipating news or the results that can impact our loved one's health, which keeps us in a state of emotional stress. Maybe it's hope that they come up with a diagnosis or a plan, or things will turn out, or the what ifs. This anxiety can be exhausting even when we try to relax. We're just on edge and you find yourself fidgeting or just nervous. Also, another reason you might feel draining or exhaustion is the lack of control, because in a waiting room, we're often helpless, unable to actively do something for our loved one that we're waiting with, which can be frustrating and unsettling. You know, with my mom it was. I was always worried she was going to get upset and walk out, because my mom was a very impatient person Versus Dennis. I can see that he's like what is it when you move your feet up and down and your knees move? He's always kind of fidgeting that way. You think this lack of control over the situation can heighten your stress, especially when you see your loved one's stress or making the waiting feel endless. You're waiting and you're waiting, and especially if you know, for example, you got to go back to work or you have another appointment or you have all these things on your plate.

Speaker 1:

Another one is the physical fatigue, because caregiving is already physically demanding, so the act of sitting in an uncomfortable chair for long periods adds to the physical toll on our bodies. You know, think about it. Poor posture, lack of movement or prolonged sitting can make you feel even more tired. Or even think about it. If you have to go ahead and get your loved one into you know, a wheelchair or help them with their walking, and then all of a sudden you're sore from that and you have to sit down in the not so comfortable chairs, that's even worse. So another one is this mental overload that you would feel when you think about it. Your mind is constantly filled with all those responsibilities and concerns, just like I was talking about. Sitting in a waiting room gives your mind more time to dwell on your worries and your plans, which can lead to mental fatigue. For me, if I sit down and think about it, it's even worse. And then the other one is your absence of movement or self-care.

Speaker 1:

You know, often we don't use the waiting room time for anything refreshing or uplifting. We're scrolling aimlessly through our phones which makes me even tired, just so you know and letting our minds wander can drain us even more. Without intentional breaks or practices to help recharge us, we end up feeling even more depleted, even more. And I mean, I think about it. Even with Dennis, when we went for his freighter consult, the waiting was exhausting and he was late. This doctor is so darn good, he's so darn good and takes so much time with his patients that we're always late, because he was 65 minutes late, and so we waited 30 minutes in the waiting room and then another 35 minutes in this 10 by 10 or 8 by 8 room, and then we meet with him for over an hour and then your head is spinning and you're even more exhausted. But when you can understand why you're feeling the way you feel and these factors, we can start to approach waiting room time differently, turning it into a space for small moments of care, working on our calm and our nervous system and maybe even a well-deserved rest. And so that's what I wanted to get at is, I felt this way and I'm like I can't let this just keep building up, because I'm starting this journey with Dennis now of aggressive chemotherapy and most likely a stem cell transplant, and so he's got his combo cancer back of Hodgkin's lymphoma and non-Hodgkin's lymphoma. This combo is back and they're going to have to start aggressively treating it, and so I'm going to be there more than I was in the last six months now.

Speaker 1:

So let's talk about when we're in a waiting room with a sick or an impatient loved one. The stress can multiply, and here's why this experience can be even more or particularly exhausting. And so you want to think about your loved one and how they're reacting. Think about what they're doing or what they may not want to be there. They may be anxious, they may be sick. Whatever it would be, you're carrying this emotional weight of their suffering. Seeing your loved one uncomfortable, in pain or anxious can be deeply distressing for you. While they're feeling ill and struggling, we feel this pain with them, and so, as a caregiver, we often internalize their discomfort, which can quickly drain our emotional stress and our emotional reserves even more. So, being aware of that, you're also thinking about oh my gosh, we know that they may be sick, and I'm focusing on the sick or the disease that's going on.

Speaker 1:

Now in your mind, you're probably thinking increased responsibilities, because a loved one, or the impatient loved one, often requires hands-on attention. While it's calming them and whether it's calming them, managing symptoms or helping them get uncomfortable you're working even more. This added responsibility means that you're constantly on, even in a setting meant for waiting, which can physically and mentally exhaust them. You know, I think about my mom. My mom did not want to be in waiting rooms. My mom did not want to go to the doctor very often, and so, sitting in a waiting room, I was trying to distract her, I was trying to entertain her, which is even more exhausting.

Speaker 1:

Also, think about your heightened anxiety when a loved one is unwell. We may worry more intensely about the outcome of the visit, the fear of bad news or the uncertainty of what are the next steps can really add to that emotional stress. This worry, compounded worry, makes it hard to stay grounded or calm, further depleting your energy. That was me not with my husband so much, but with my mom. And then constant reassurance is what we're trying to do.

Speaker 1:

And if your loved one is impatient, restless, frustrated, you often feel you need to reassure and keep them calm, and this can involve answering questions, distracting them, soothing their anxieties, but it puts an extra strain on your wellness, their anxieties, but it puts an extra strain on your wellness. And so you're trying to figure out what can I do for them before, during and after the visit. Or you can think about the physical demands that you need to do that, maybe get them there, or you need to take care of during that, because your loved one might need assistance moving. I observed many people at Frederick Hospital helping their loved ones. I know it's necessary, but I observed every single person being called into the doctor's office and pushing their loved one in a wheelchair or helping them with their walker, and then they have to take their shoes off and their jacket off and get on the scale. And sure, the nurse is there to help, but who does most of the work with their loved one, that caregiver, and that's exhausting. That's just one of many examples.

Speaker 1:

This physical responsibility can feel overwhelming, especially when combined with a long wait, that sort of thing or the other the one that we talked about before, just when we talked about you and now we're talking about your loved one is you're neglecting your self-care. When all attention goes to your loved one, there's often little time for you in your personal needs. You might skip taking a break for yourself. You forget to hydrate or ignore your stress signals. Maybe you're feeling hot or nervous Over time. This constant focus on others leaves you feeling both emotionally and physically drained. How many times have you gone home from taking your loved one and you've got them all situated now, after the appointment, and you are just toast? You are just spent. Yeah, with all these factors at play, waiting room fatigue becomes a complex mix of worry and responsibility and emotional drain, and when you recognize these layers and how powerful they are, it can be a reminder to create small moments of care, even in these challenging settings, so that we can recharge ourselves and we can recharge our own energy and show up fully for our loved one.

Speaker 1:

Yeah, let me just take a. I'm drinking a nice warm cup of coffee this morning. I'm recording this the Monday before the Tuesday, so I'm recording this on the 4th of November. So what I want to do is talk about some practical tips for reducing waiting room fatigue. Now I'm going to bring up some, but I want you to keep your head spinning and thinking about what other things maybe spark you during this. These aren't the one and all. You're going to figure out that you're going to find little things that are going to work for you. So these are strategies or things that can help you. So the ultimate goal is so that you can stress less and you can conserve your energy as well.

Speaker 1:

First of all, I want you to think about creating a calming routine, and it may be on your drive to the appointment, it may be during the appointment, whatever it would be. There is so much research on breathing, deep breathing and you might have heard the word box breathing but just breathe in for a few seconds and slowly release the breath. You know you practice slow, deep breathing exercise to reduce stress and anxiety. Breathe in for four, hold it for four, exhale for four. You can do that, and you can do that without even anybody noticing you if you just do it through your nose and just doing that, it tells your mind and your body to go ahead and take a breath and to go ahead and rest and calm. You can always do mini meditation. Now, something really nice is you usually can't go back with your loved one when they're getting lab work. This is the perfect opportunity for you to do something like that Mini meditation. You can use a meditation app or just close your eyes for a few minutes and focus on a calming thought or visualize a peaceful place, just getting your body to calm. Because for me, most of the time you go ahead and you take your loved one to the appointment, get them to the lab first. You sit down, wait for the lab technician to call your loved one. They take them back. For the lab technician to call your loved one, they take them back. You have just that five minutes. Maybe that you can create a calming routine. That's one, okay.

Speaker 1:

The second one is engage in a creative activity. Maybe you journal, for example. Maybe you bring your small notebook or use a digital journeying app on your phone and you jot down gratitude Five things I'm grateful for today. Maybe that's a positive thing. Or you journal out your thoughts and your worries and get them out of your head and saying, okay, I've released them. And then you reflect on the positive pieces. To ease your piece, you journal. Maybe you have a hobby that you can just take with you that keeps your hands and your mind occupied. I've seen so many people knitting and crocheting during the piece because they just have their little bag and they pull out their devices like they're knitting needles and the yarn is already in the bag, so that it's right next to them and they're just knitting away and it passes the time and it creates something meaningful for them.

Speaker 1:

Think of an activity you can do. When we were at Frederick Hospital, every single waiting room in the center had a puzzle set up and chairs around the puzzle. So maybe for you that's an activity that you can enjoy. Maybe your loved one would love to pull up and do that. Maybe that's something.

Speaker 1:

Number three is use the time for personal growth, if you can. Maybe you read or listen to an audio book while you're in the waiting room, whether it's your favorite podcast or it's your favorite book, something inspiring or even a caregiving resource Reading or listening to a book can provide a distraction and an enrichment. Reading or listening to a book can provide a distraction and an enrichment. You know, maybe obviously you don't want to have it up so high that you can't hear a name being called, but maybe you do that and going ahead and doing that. But think about what you can do. I've so many times have taken digital courses and I have taken the journals and I've already listened to it. But I had to do journaling work while I was there and that was really good for me to go back and write in the journal and the assignments that I was giving and it kind of gave me a boost.

Speaker 1:

Now, otherwise, you can prioritize self-care in small ways. I don't know if you remember me talking about it, but I have this grab and go bag. It's a bigger bag where I have all of my essentials in it, but before I leave I put in a bottle of water and some healthy snacks. So that's a way. If you can't control anything else, you can control staying hydrated if you bring a water bottle with you. Most of the clinics have a water fountain or a water refilling station where you can go ahead and refill your water bottle if you bring a water bottle along.

Speaker 1:

Healthy snacks I love the. It's kind of like a trail mix version. I have one that has almonds and cashews and pieces of dark chocolate. That kind of boost my energy. You can find these little healthy snacks, especially nuts. That can make a huge difference in how you feel physically.

Speaker 1:

Another one and I'm stealing this from my friend, katie, who did the podcast episode right before Katie Prentice, she had talked about gentle hand massages finding your favorite lotion. If you're okay and your loved one can tolerate. If you have a smell or you get one that's unscented but you get your favorite lotion, put it on and you can give yourself a hand massage. Or you stretch your neck or your shoulders and you go ahead and help release those tensions. Now I've also done, depending on the waiting room, you can't look like a mad woman walking circles around the waiting room, but if there's a hallway by your waiting room, maybe you take a few walks down the hall. You take a few walks or you stand up and you stretch. That way you can figure out different small little self-care ways to do things. Now, obviously, think about your loved one. You don't want them to feel nervous with you doing all of these activities. You also can pack. If your loved one just had labs and now they can eat, maybe you pack them a healthy snack while they're waiting too.

Speaker 1:

Another one is stay productive when it feels right, and you can do that. Catch up on small tasks if it feels right for you. I could not work alongside my mom she would get so mad at me or she'd feel guilty. But if you are with a loved one, that doesn't mind. You can handle emails, you can make your grocery list or plan your meals. Now, I did that with my mom sometimes because we would go to appointment and then we would take advantage of an extra trip and go to the doctor. When we went to the doctor, we went to the grocery store after and we said well, let's make our grocery list while we're thinking here, or we can plan what we're going to have for supper tonight or whatever. And we said, well, let's make our grocery list while we're thinking here, or we can plan what we're going to have for supper tonight or whatever, and we would plan that way. Then you feel productive and you feel like you're using the time wisely.

Speaker 1:

But obviously notice your surroundings and focus on how you feel or simply observe what's happening around you without judgment. There's nothing worse than somebody making phone calls in a waiting room and they're making work phone calls. Oh, I just cringe and it doesn't seem appropriate. So practicing presence can help you reduce anxiety when you're doing it the right way. You also can think about connecting with a support system Maybe it's text a friend or a loved one while you're in the waiting room, because a quick text can really just help you and uplift your mood. I'm sitting in the waiting room and I am bored or I'm feeling nervous, and they can go ahead and you can chat back and forth. Tell me something that's happened to you this weekend. That was fun, what did you do, or whatever it would be. You can also go ahead and connect with your community, if you have a community that you wanna connect with. I send out those emails every Friday. If you haven't read that email, you can read that email and send me a message back.

Speaker 1:

But being able to do that, another thing that you want to think about is plan for relaxation when you get home. You want to go ahead and think about what do you have planned afterwards, because if you know that you're the type of person that's going to be totally drained. You want to be respectful of that energy. When you get home, set an intention, especially when you're sitting in the waiting room or planning in advance. Maybe it's a comforting ritual when you get home, maybe it's going for a walk, maybe you have to go back to work, but maybe you say, before I go back to work, I'm going to take a walk around the block. Maybe it's a warm bath or a cup of tea or watching your favorite movie to get your mind off of everything. Think about that and give yourself time to go ahead and release that drainage, for lack of a term, whatever. Okay, I want to tell you some things too that I'm experimenting with right now, because I feel this drain is just something that has been following me for seven plus years.

Speaker 1:

So what I did at Freighter is I played the A to Z game while I was in the waiting room. What can I find that? Or see that starts with the letter A? Well, lady was eating an apple. So I said, okay, apple. Now I'm on to B. What can I find that starts with a B? Oh, I see somebody wearing a blue coat. What can I find with the letter C. Oh, I can see the cancer sign. So I went ahead and went through the whole alphabet and you know what? It gave me? Just a fun little giggle. And Dennis would lead over to me and he said what are you doing? And I said well, I'm playing the A to Z game. You know how you play that when you're driving in a car we all have to find the letters of the alphabet. Well, I found the visual ones and I didn't necessarily look for the letter, I looked for anything that started with the letter and I had so much fun. And then I got cut off. But I started the color game. How many different colors can I find? I had to grab my phone and look for red and blue, and every time I found a color. It was amazing how many different colors you could find. So I did that. So it was just something because I was getting so bored.

Speaker 1:

Another thing that I thought was really cool at Frederick Hospital is they have one wall in the waiting room that's all windows, which is really good because natural light is so essential when it comes to healing. But they had dry erase markers and people would color on the windows Some of these beautiful drawings that people did and they you know artistic drawings and then some people would just write a quote on there, or they would write their name and where they're at in their journey or whatever. It was really fun to go ahead and read those. And when we go back, or if we have to go back, I'm definitely going to go ahead and write something on the boards. And from what I learned is they go ahead and take those off once a month and then we go back and they let us fill them up again. So that was kind of fun to do.

Speaker 1:

And as I'm sitting here, my light in my office just went out. I have one of these lights that is on a timer or a motion, and it just went off. So I'm sitting in the dark. But you don't know that, okay. So, oh, and the logical side of me is thinking, too, that I'm going to get more proactive at when we check into the doctor's office. I'm going to say hello, how are you? And so-and-so is here to check in? How are we doing from a wait time perspective? Is the doctor on time or are we anticipating a longer wait than normal?

Speaker 1:

I am going to start proactively asking, because nothing's more frustrating to know that you have to wait longer in your appointment. For example, dennis's appointment was for 2 o'clock. Well, we didn't see the doctor until 3.05. And we played this little bet game with each other and I won because I said it's going to be after 3 o'clock and he's like no, it's not going to be after 3 o'clock. He goes I bet it's going to be before 10 to 3. But I think that's going to be because if they had told us that he was running 30 minutes late, or your doctor's running 30 minutes late, that might allow you to.

Speaker 1:

If there's a cafeteria in the place, you can go ahead and get something to drink, or you can get something to eat while you're waiting, or you go find a better spot to sit down which is more comfortable. So let me close up this session by saying a few things. Even in the waiting room, you have the power to create pockets of peace. That's your time. Caregiving asks a lot of you, and even intentional moments you take for yourself is a step towards building resilience, reducing your stress and all that kind of stuff.

Speaker 1:

Imagine leaving the waiting room not just with answers or updates, but a renewed sense of calm and energy, and you had prepared for it in advance. That's what we want to try to do. It's kind of getting in front of that stress and anxiety that we can especially if you know who you were at Pay attention to how you feel and what you're experiencing during the wait times, and if you're like me, you want to get in front of things. What can I do that's going to help my stress and my energy? Maybe it's a color book, an adult coloring book, and that makes you feel better. Whatever it would be, try different things, seeing if that would be. Maybe it's. I got to eat a good breakfast, because if the doctor runs late and the appointment's at 11 o'clock and they're running late, that means we're not going to eat until one. Maybe that's something you think about If you're finding the waiting room particularly draining.

Speaker 1:

Remind yourself, though, that you're not alone in this. We all feel this way. Each of us has strategies and struggles and little moments of relief, and by sharing them we can lift each other up. So guess what I'm going to ask you to do Share what you do from a waiting room perspective. I would love for you to tell me how you do in a waiting room and what you're doing to combat the stress. Maybe it's prayer for you, whatever it would be. So next time you're waiting, try one of these small acts of care and know that you're part of a community that understands and supports and celebrates each other, and you're doing it for yourself, to make a difference, and we're going to continue to share these as well. Let's keep the conversation going and what your favorite way to go ahead and combat that is and trying these little pieces of self-care is going to make a huge difference.

Speaker 1:

Now, if all goes plans, I want to give you a little update from a dentist's perspective. We are waiting this week now for the doctor and freighter to consult with his colleagues. They're trying to determine the best possible chemotherapy regimen and he's meeting on Tuesday which this is when the podcast episode airs and there's a group of them that get together and they're going to come up with the best potion for Dennis I use potion as just a joke, but it's not a joke and then, once that is approved, they're going to send that to Dennis's Green Bay oncologist. Then the Green Bay oncologist starts the paperwork approval for the insurance company. Once that's done, we have, hopefully, a. We can start aggressive chemotherapy on Thursday and Friday, and so I'm going to try different techniques on Thursday and Friday because I know that I'm going to be sitting along his side sitting in waiting rooms waiting for him to get out of his labs and his doctor's appointments and we're going to move through there.

Speaker 1:

So next week I'll go ahead and share my strategies of what worked and what didn't work, and I want to read yours, and so go ahead and hit that text button and go ahead and follow through with that.

Speaker 1:

And, as always, I have a weekly newsletter that I share with you on Fridays. Now I do one on Tuesdays to remind you of the podcast episode, but the Friday one is really the one that is more of an informational, inspirational spin. All of those gather those up together and going ahead and sharing those with you next week, before the interview that you're going to hear from Kathy on so that's another person by Kathy, one of our caregivers that listens to the podcast episode will be on next week's episode. Okay, that's what I have for you today, so I hope you enjoy the rest of your day today and week. I have for you today, so I hope you enjoy the rest of your day, today and week, but remember, always, always, always, look for your personal plan to go ahead and keep that caregiver stress low and trying to go ahead and fill your cup and be cognizant of the fact that your cup, when your cup is getting low, it's time to go ahead and refill that cup. You have a good rest of the week. Bye for now.