Riding the Waves of Caregiving: Conquering Chaos and Guilt

Ever found yourself juggling the chaos of life, work, and caregiving - all while struggling with guilt and stress? This week on Caregiver Cup, we unravel my personal journey during a tumultuous week in 2017, navigating Thanksgiving, work, my husband and father's chemotherapy treatments, and my own birthday. We delve into how accepting the present moment, despite the chaos, can offer a pathway to letting go of the guilt and pressure that so often accompanies caregiving.

Navigating a cancer diagnosis can be a whirlpool of emotions, and self-care often falls by the wayside. We'll discuss how crucial it is to grant oneself grace in such trying times. Leveraging my own experiences, we'll explore how therapy and community support can become pillars of strength when everything else feels overwhelming. Caring for oneself is imperative, and it's important to understand how to prioritize our mental health. 

Guilt is a common companion for many caregivers, often arising from unrealistically high expectations we set for ourselves. This week, we delve into the societal pressures and lack of control that can amplify these feelings of guilt. We'll share practical tips for self-reflection, setting attainable expectations, practicing self-compassion, and seeking support. Together, let's learn how to manage and overcome caregiver guilt, while also prioritizing self-care. Come, join us for this enriching conversation, and let's explore how to refill our cups in the midst of caregiving chaos.

Transcript

Speaker 1: 0:00

Well, hello, my friend, and welcome to another episode of the Caregiver Cup podcast. It's Kathy here. I think this one's going to be one that you're going to go ahead and resonate with, because I've had conversations with clients and friends this week about this topic and I have three questions for you, or for me as well, and if we could solve this, we could solve world hunger as well. Why do we feel guilty for not being enough? Why do we feel guilty for not doing enough, and why do we feel guilty for slowing down when life is chaotic? Well, let me start out with a story here.

Speaker 1: 0:42

Once it was Monday of Thanksgiving week, 2017. And it was also the week of my birthday, and I had so much on my plate. Here I was at the Vince Lombardi Cancer Clinic, watching my husband in one chair and my dad in another chair getting their chemotherapy treatments and fighting their battle, and at that time I was having, I felt like I was having a panic attack. I tried to put on a good front, smiling at the nurses, chatting with my mom and trying to stay as positive as I could. I little did everyone know that I was living this life of lies this week or during that week. Inside it was a complete mess and on top of it I committed to hosting Thanksgiving, and I think that just bubbled and boiled me over and which meant that I had to do all the cooking, the baking, cleaning of the house, running to the grocery store to get the last minute fresh vegetables and fruits, finishing my work at work as I had a major project that was due at the end of the week and hoping that my dad and my spouse would be healthy enough to enjoy the day, because deep in my head, I knew that this was my dad's last Thanksgiving and it could have been my spouses. I also had all of these lingering things that I had to do yet, like this big stack of all of the calls that I had to make, like insurance calls. My dad had supplemental health plans that I had to file claims with. I also had to take my dog to the vet that week.

Speaker 1: 2:32

Why in the world would I have scheduled that on Thanksgiving week? I have no idea, but all I wanted to do at that point on that Monday was go back to bed. I wanted to just go into a fetal position and cry, because the last few months had been nonstop. I was doing everything for everybody else and I was not taking care of myself. I could barely keep up with my work. Like I said, I had a work project that was due and when I was in these chemotherapy treatments, which felt like every other week I was working half days and my stack of work and my project was getting further and further behind. And then, on top of it, everybody was wishing me a happy birthday and I was thinking happy birthday, no, they should be saying hell birthday or sad birthday, because I did not feel like celebrating at all. It wasn't a happy birthday for me.

Speaker 1: 3:36

So today, in today's episode, I want to talk about how to live the right way when you're in the most challenging, chaotic, stressful time of caregiving. It requires you and I to take a step back and look at the situation realistically and figure out the best way to survive and thrive and yes, survive and thrive, because when things are chaotic and challenging and stressful, all we can do is survive it and thrive in it. And one of the biggest mistakes I made as a caregiver in 2017, and in this story I shared is being okay and allowing myself, and what I didn't do was it was be okay and allow myself to be okay in the present. I didn't. I was really trying to fight it and trying to go ahead and live a life like I was before all this happened, and I know you can relate to this. You can expect to hold yourself to these highest standards and expectations and the way. It wasn't a season when you weren't stressed out and stretched and your plate is full because now it's stressful, you're overwhelmed, you have too much to do.

Speaker 1: 4:56

It reminds me and this is just a weird analogy, but this is how my brain thinks sometimes it reminds me of, let's say, you go out on a boat and all of a sudden, your boat starts forming a leak and you notice that water's coming in the boat and right away all you want to do is bail your, bail the water out, get the water out of the boat and that's how we feel like when we're in caregiving, versus the best thing that we could do if we were in the boat. Instead of, because eventually we're gonna sink, what we need to do is figure out how can we get to shore or how can we plug that hole Until we get to shore, versus just bailing out the water, because the water is just gonna keep coming in. Same applies to us. What I've learned in all of my years of caregiving and in these types of situation is when, in the midst of chaos, in the midst of challenges and a crazy season, it's best to embrace the suck yes, I said it, embrace it, embrace the crappiness of it all, embrace the feeling of pressure and guilt and really just embrace it, because feeling pressure and guilt only make the season worse, and so you want to embrace the suck, and then, when you're feeling the pressure and the guilt, you have to figure out a way to just let it alone, and that's what I want to talk about. So what I did is I taught myself these five lessons or actions actually in tough seasons, and these are like five steps that I do and five actions that I take when I'm feeling chaotic, stressful or something new is happening that's causing all of this, because I've been through oh my gosh, five plus probably six plus.

Speaker 1: 7:06

Diagnosis is, of course, I've had a lot of cancer, from my mom to my dad, to all of my husbands, so I know how it feels when, all of a sudden, you're faced with another terrible situation. First one that you have to do is you have to take it all in, take it all in and collect it in your head and your body so that you can go ahead and think through it. I find, when I collect it at all, I find a good walk helps, or journaling it out or talking to a friend will help me see the big picture. Because what happens when that terrible news comes or the the chaos comes right away. Your negative thoughts want to come in and they want to go ahead and invade your mind. My second piece is then, once you take it all in and collect it Like my husband had stage four chronic lymphocytic leukemia that's what was first diagnosis was and you have to take it all in and understand what it is and understand the options.

Speaker 1: 8:23

And then, once you collect all of the data and all of the information, the second step is you have to let it settle. You have to let it settle and you have to let your body and your mind go through what it needs to do, because your thoughts and feelings will start tipping to the negative, your emotions will take over and maybe even dictate your actions without even you knowing it. So you have to let it settle in and I focus on the facts, I focus on the real things that I know because right away, when I heard the stage four CLL is what they call it Right away I was thinking of the worst. What am I going to do when he's gone? Am I going to be a widow? And that was even far from the truth. But why did I go there versus? Okay, he's got that. So what are the? What is the plan of attack? What, what is the information that we've collected? What are the next steps? That sort of thing.

Speaker 1: 9:26

Number three, then, is now you need to logically and the word logically sits into my head is prioritize what's important. You might think you can do it all, but you can't. When, when Dennis had my husband Dennis had his diagnosis, we knew he had to have scans done, biopsies done and then, eventually, we had to come up with a treatment plan and chemotherapy. Well, that was priority, but also I had to go ahead and stay working. But how could I do that? And I had to prioritize myself Working with clients. I have them write down everything they are doing, and then what I do is I challenge them on their list of all of the things, because I have them write them all down, and then I have them highlight what's priority right now.

Speaker 1: 10:27

For example, do you need to work right now? Can you take leave from work? Can you take some vacation time that you have? Because this is the time where it's really important for you to stay connected and gather all your nuggets and your facts, and then do you need to be at every appointment? I've talked about this in prior podcast or in 2017, kathy, do you need to host Thanksgiving? Is it really necessary? You need to host Thanksgiving, or is there a better way to host Thanksgiving? What can you? And if you're a computer nerd, what can you control or delete? What can you delete? I had to lean into therapy and community to get me to see that I was being unrealistic with the expectations that I was holding to myself.

Speaker 1: 11:22

In 2017, I was in by the end of the year. I was in such major burnout. My body was affected by it, my mind was affected by it. I was helping no one in the state that I was in. I was just in this bad state, and so, when I had learned this, being able to take it all in and let it settle and then prioritizing what's important was huge. Now, one thing that you should be prioritizing for step number four, or action number four, is your self care. Your stress and overwhelm will tax your body and it'll mess with your mind. So finding small bits of self care is important, but you have to remember that maybe what you did in the past for self care you don't have time for, or it's too much right now. So you're going to have to find out what's going to work for you. Is it short, quick naps? Is it a quick walk in the middle of the day? Is it meditation and calming, because your body is in such panic and anxiety right now. What I did that I think contributed to the added stress and pressure, was I kept doing my hit workouts. I thought, by pushing my body and and stressing my body to another level and pushing myself was helping me release the stress. Well, it was actually just keeping my body stressed and I didn't have it's almost like I didn't have time to comment, and so if I could go back and do it over again, I would have said Kathy, now is the time for you to maybe look at a yoga class or meditation or looking at like routines where I could take a hot bath or, you know, just take a nap, because those were things that I needed more than pushing myself in a workout and beating myself up because I didn't have the strength to go ahead, and endurance, like I used to because I was so exhausted.

Speaker 1: 13:48

Number five is toss everything else aside. It's okay to pause things. It's okay to say no to things. It's okay to grant yourself grace and just something as simple as who cares if your host doesn't get vacuumed today? Can you do it just once a week? Or it's okay that you didn't have time to go ahead and cook a big meal. Instead, you ordered in takeout. That's okay. So these are the five actions. Let me repeat them again. Take it all in. Let it settle logically. Prioritize what's important, prioritize your self-care, and then just pause the things that aren't going to help or you can't get done right now and be okay with it. Grant yourself grace Now. It's easier said than done, I know that, but it takes discipline, it takes setting healthy boundaries and, most importantly, you need to be aware of your own self-love.

Speaker 1: 14:57

It's almost like you have to go ahead and take care of your loved one but at the same time, you have to take care of yourself. You have to do it when we're I'm in the fifth week of the Empowerful Caregiver School, and one of the goals of the Empowerful Caregiver Schools is to think like an Empowerful Season Three caregiver, and this is what we're talking about. You are thinking about the best possible scenario for you as a caregiver. You have to go ahead and really focus on yourself. It reminds me of a woman that's pregnant, and when you're pregnant, you have to take care of the baby inside of you, which means that you have to take care of your body too. Well, the same applies for you. You wanna be your best person that you can be as a caregiver, so in order to do that, you have to take care of yourself.

Speaker 1: 15:59

Well, as I moved into 2018, and as I learned from my mistakes, I did a better job. By the middle to the end of 2018, I found a morning routine that worked for me. I no longer ran, which I do love, but I learned that I couldn't run because of the fact that my body was too stressed and I knew I was gonna injure myself. So I opted for a morning routine where I could walk, I could go ahead and make myself a healthy shake, I could go out into my garden a little bit, but I was outside taking in some things. When it rained, I did meditation and yoga. Another thing that I did is I asked for help. I asked for help because I couldn't do the things, those things that I tossed aside. I asked for help on those things. I wasn't going to be able to keep up with the lawn or the shoveling, I wasn't going to be able to go ahead and keep up with the groceries, and so I ordered a lot of things online, whatever it would be. You have to go ahead and do that.

Speaker 1: 17:11

I also talked to my boss, because what was stressing me out is being constantly behind in work and constantly not performing at my best, and I was just bluntly honest with him and told him that I can't give it my all. My priorities are myself and my spouse right now and my existing family, and those are my priorities. Work no longer was a priority, not that financially, it wasn't a priority, but I was going to be able to perform. I told him I would be able to perform at a B minus. I no longer could come to work with my A game on. I just couldn't. And, yeah, I got passed up on a promotion, but I was able to go ahead and feel comfortable with my voice and what I did and being able to do that.

Speaker 1: 18:04

Now I could get into a whole nother piece about how caregivers deserve a better legislation or a better protection plan when they are in the midst of this, but I'm not going to get into that. But I could get into a whole nother stance on that. Now I still struggled with my people pleasing tendencies, which means I still felt guilty. I still felt like, oh my gosh, I'm not enough and I have to continue to work on this. I continue to work on my guilt each day and every day, for making healthy, boundary choices for myself, even outside of caregiving. If you feel guilt, you want to recognize why you feel guilt, and so I want to talk about this in the second half of this podcast today. So, if you still feel guilty, you want to ask yourself why, and if you have any of these, then you can start working on these.

Speaker 1: 19:14

Are you setting unrealistic expectations for yourself? 99% of the time, most caregivers do. Caregivers may be setting exceedingly high standards for themselves, expecting to be able to fulfill every need and every meet up, every demand with their loved one, when, inevitably, they fall short because of these expectations or unrealistic expectations and then they start blaming themselves and feeling guilty. So you know, I could say stop it, but it's hard to be able to do that. But when you look at those, are you setting unrealistic expectations? Or maybe it's a societal pressure? Society norms and expectations often emphasize the importance of selflessness and sacrifices, particularly in context to caregiving. Caregivers may feel compelled to meet these standards, leading to feelings of guilt and why others perceive them as falling short. Yeah, there are a lot of times that I will be out and about and people will ask me how's Dennis, how's your dad, how's your mom, whatever it would be? And I'm like, what about? How's, how about me? But they expect a lot of times.

Speaker 1: 20:35

Our society expects that we give up everything for our loved one and we give up enough. But it doesn't have to be this way. We need to strip the societal culture of caregivers have to go ahead and give up their lives and be martyrs. Another one that you may feel guilty. Why is emotional attachment?

Speaker 1: 20:58

Caregivers often have deep emotional bonds with their loved ones and their attachment can lead to a strong sense of responsibility and what of for their well being. And they are unable to alleviate the suffering or provide the desired level of care. If their love one is chronically ill, there's nothing they can do. They may experience guilt for not meeting their, their, their expectations, or they may feel guilty for being emotional about their loved ones. Another reason why is lack of control. Caregivers may encounter situations that are beyond their control, such as their loved ones' illness progression or the unpredictability of their certain health conditions, and then, when faced with these circumstances, they blame themselves for their perceived inability to control or improve the situation. We can control a lot of things, and so we need to lose that guilt. And then we might feel guilty for our self-care neglect. And if we don't, many caregivers prioritize the needs of their loved ones over their own well-being, and the self-care neglect can lead to feelings of guilt, especially when caregivers believe they are not devoting enough time or attention to their own needs. I felt guilt and shame for gaining 30 pounds and looking the way I did and I couldn't figure out how to balance it, and I didn't even want to leave the house at some points because of that.

Speaker 1: 22:38

It's important for caregivers to recognize that they are doing their best under challenging circumstances and it's important for you to recognize that your own well-being alongside the care of your loved one is important. Seeking support from others or practicing self-compassion and setting realistic expectations can help you manage the feelings of guilt and promote your own emotional well-being. So that's easy to go ahead and understand, but overcoming guilt takes a little bit of time and it's a gradual progression. Like I said, for me, it took me months, probably until the end of the summer of 2018, so well over six months to figure out how to be okay with my guilt, but then how to go ahead and overcome it and manage it. And one of the big things that you have to work on, and I'm going to give you seven tips to go ahead and manage and overcome your guilt. One of them is self-reflection you need to take time and reflect on your feelings and experiences, without judging yourself. Recognize that experience guilt is a common human emotion, a normal reaction for caregiving situations, and then you need to set realistic expectations for yourself in these challenging circumstances.

Speaker 1: 24:13

You need to acknowledge that you're doing your best, understand that it's not always possible to meet every need or expectation perfectly, and it is okay and really vital to prioritize your well-being alongside of your caregiving responsibilities. I'm envisioning a swimming lane and you're swimming alongside of somebody and you want to be swimming right with them. You're caregiving for your loved one, but you have to find that equal balance, so that may require you to play with your caregiving as well. What things can I do or what things can I ask for help with or change in my caregiving? You need to practice self-compassion and grant yourself grace. Treat yourself to kindness and, with kindness and understanding, offer the same level of compassion and support that you do to a friend or a loved one in a challenging situation.

Speaker 1: 25:09

I find it so easy to give advice on this. As a matter of fact, I gave advice to one of my friends this past week and said to her you know you're in this tough situation. It's okay to put everything aside and it's okay to go ahead and just take care of yourself right now and maintain what you have right now. Don't push yourself. It's easier to give it to somebody else, but then when you look at yourself, you need to go ahead and be realistic.

Speaker 1: 25:40

Another one is you may need to seek support If you cannot figure this out. There's no shame in talking with other caregivers talking to me as a caregiver coach, finding a support group, finding a licensed professional because sharing your experiences with others who can relate may help alleviate feelings of isolation and guilt, and you don't want that to build up. And then you need to set those boundaries, establish clear boundaries that ensure that you make time for yourself, care and personal well-being. You learn to say no when necessary and recognize that prioritizing your needs is essential for your overall well-being and, most importantly, your ability to provide the most effective care for your loved one. And so you can use your loved one as your platform to say I would love to go ahead and attend your grandson's birthday party or this event, but right now I can't. I have my priority is my loved one and taking care of myself and just maintaining what I have, and I just don't have the time. And you know what? If they're a good friend, they'll understand, and if they don't, oh well, you know, eventually they'll figure it out.

Speaker 1: 27:01

Number six is focus on positive actions. Shift your focus to positivity and efforts you are making in your caregiving role. Celebrate your wins. Recognize your meaningful contributions, focusing on positive things and training your brain. I've always talked about taking a walk and getting rid of that negativity in your brain or journaling gratitude, but also celebrate the little victories. Celebrate the wins. Focus on positivity. If you have a friend that's extremely positive, then meet with that positive friend. Even if you have to do a FaceTime call, do something like that.

Speaker 1: 27:47

And then the last one is practice mindfulness. Engage in mindfulness activities like meditation, deep breathing, yoga, whatever it would be to go ahead and really get you to help reduce your stress and increase your self-awareness. Mindfulness practices can promote emotional resilience and a greater sense of inner peace, and this was the hardest piece for me, but this was the game changer for me when I went ahead and said, okay, I got to practice calmness and meditation. I mean, there are so many tools online that you can find Just Google meditation or Google mindfulness practices. Put on a video with yoga, talk to a friend about it. You're going to be able to find mindfulness practices that are going to help you.

Speaker 1: 28:45

So, to end, today, by integrating these practices into your daily life, you can gradually work towards managing and overcoming those feelings of not enough, those feelings of guilt, those thoughts and emotions that are holding you back and keeping you in that panic state or that chaotic state. Yeah, the world may be, the season that you're in is horrible and challenging, but what you can control are some of these mindfulness practices overcoming feelings of guilt and not allowing them to consume your mind and allowing that to go ahead and saying you know what, call that something, call it Mimi or whatever you want to call it and saying, you know, susie Cube, mind, you're not going to win today. I am going to go ahead and overcome this because I have these wins today and I'm doing the best that I can. And guess what? We're going on a walk today and I'm going to go ahead and look at all of the beautiful fall colors that I'm seeing outside today. So, susie Cube, you're probably going to run away, whatever it would be. I mean, those are chaotic things.

Speaker 1: 30:06

Journal it out, because allowing yourself to prioritize your own well-being while practicing your or, I'm sorry, not practicing by while providing care for your loved one, gets you to be powerful, gets you to be saying, yeah, I may be in season one of my life which is chaotic and challenging and it's all new and I am just a mess right now, but I am going to use mindfulness practices and I am going to go ahead and focus on being powerful. I know I'm powerful is not a word, but I created that word, but I am going to be in a powerful caregiver right now. Let me give you a virtual hug if you're going through the season. Right now, let me tell you that you need to grant yourself grace and you need to go ahead and stop the thoughts of guilt and stop the thoughts of being enough, because you are doing the best you can do and you have to tell yourself I am doing the best possible amazing work that I can do. I love my loved one, but I also love myself and I have to take care of myself because I know this journey is long and I have to sustain it for the long run.

Speaker 1: 31:24

Take care of my friend and, as always, look at where your cup is at today. Do you have? Do you? Are you continually filling it up? Are you keeping that cup at a level where you can go ahead and be at your best? Take care and we'll see you next week. Bye for now.