I Have Fallen and Need Some Help

How to Identify and Avoid Caregiver Burnout

July 24, 2023 Erin Thompson
I Have Fallen and Need Some Help
How to Identify and Avoid Caregiver Burnout
Show Notes Transcript

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Erin:

Erin here. Thank you for joining me for another episode of the I Have Fallen and Need Some Help podcast. Today we are going over the topic of caregiver burnout. Burnout in general is... A topic that is very big, a big topic to talk about within the senior living industry, within healthcare, within parenting, within caregiving. Um, I believe based on my own experience and my most recent experience that burnout is an internal game. It literally is our minds and how we think about things. Now, don't get me wrong, there's physical burnout. Right? And I have been there. Where I just cannot do this anymore. I need a break. A substantial break. That's real. That's physical. We have to physically rest in those times of physical burnout. Because we physically can't keep going. So, in regards to physical burnout, yes, resting, sleeping, doing nothing, all those things are important. But when we talk about the real burnout definition, when it comes to the emotional, the psychological, the I'm not working out in 115 degree heat, building ditches, laying pipes, kind of physical burnout. I am struggling with the pressures of life, the demands of life, the demands of being a parent, and working, and sports, and being a caregiver of an elderly loved one who needs all my attention, who may have dementia. These are the types of emotional burnout topics that I want to talk about. Because this is what stops us from being, I think, the best versions of ourselves. This topic alone has prevented me from reaching a level of self assurance or professionalism or status in my life that I want of peace. It's prevented peace in my life, which is what I think most of us want. That's what I want to talk about today. And I, I do consider myself an expert in living in overwhelm. I do not believe I am an expert of winning in overwhelm. I consider myself a beginner. Um, and maybe in recovery right now, but not necessarily. Uh, a master of managing it, but I have come a long way and there are many reasons why I suffered burnout. Um, I am a caregiver. I've been a caregiver, um, pretty much my entire adult life. Well, most of you, if you've been listening to this podcast long enough, or you know me personally, you know that I started caring for my grandmother, really, when I was, 20, 19 years old, we actually moved in together when I was 22 years old. So I finished out my college years as her roommate, but she was my person, you know, in my journey of self discovery here this past year, I realized caregiving. Other people was one of the ways that I avoided fixing some of the problems emotionally and mindset problems that I had for myself because I was busy adding value to other people and making sure that they were okay. People pleasing tendencies, right? So when I look back on my life and my caregiving journey, this is what it looks like. I'm currently 42 years old. I cared for my grandmother. For 15 years from the time I was 19 really until the time that she passed away, and I was 35 or 36 at the time when she passed away. She passed away in 2016 so She was a constant Responsibility that I loved right but still a responsibility for Oh, for 15 years, basically. So, every Tuesday, Thursday, and Saturday, she required a bath. Every Saturday was hair day and grocery store shopping day. Now, I shared responsibilities with my mother. You know, she was not my sole responsibility. But, I was her person and she was mine. And, the bulk of the responsibility did land on me. But, My mother was very helpful. I look back and I probably put the bulk of that responsibility on me on purpose, right? Not asking for help, but the bulk of the responsibility was mine. But towards the end, it kind of played, leveled off a little bit. And so during that time, during that 15 year span, of course, I had children. And my first child was born. Early, 28 weeks, and then his second month of life, he needed a trach to survive. And so I then became a caregiver of a special needs child that I was completely overwhelmed with. I did not know how to take care of a child, let alone a child that had a trach to breathe and all of the suctioning and everything else that comes with breathing from your neck. And I still had the responsibility of my grandmother. Now, granted, in the beginning it was less, but as time went on and life kind of evened out a little bit, I... resumed my role with her because she wanted to be a part of the child's life too, right? And through all of those 15 years, because in 2015 I had my second child, but by that time she was in assisted living, I also worked inside the senior living industry where I was a leader, a manager, and a coach to lots of families in the, who were caregiving their elderly loved ones too. So I know what it's like to give everything to someone or everybody. I did it for basically 20 years. And I basically ceased to exist last year. I would say July 2022 was the time that I literally could not do it anymore. Um, and this past year I have really been diving into what led me to that place. And of course there were times that I had worked like 14 days in a row or that, you know, my grandmother was in the hospital and I had to be there or, you know, all those things. Like the physical burnout is not the most important piece that I'm going to talk about here today. It is literally the emotional component of burnout and overwhelm. Because the truth is, it was my way of thinking and my subconscious desire to please people because I gained value from that, that made me so tired. I lost the sense of who I was. Because who I was was a caregiver and that's just what I did. I could not even tell you what I did to have fun. I didn't really have fun. I didn't know how to have fun. That was my fault. Because I carried a load that I had to make everybody happy. That I carried a load that I was the one who... I knew how to handle all the aspects to make everything run smoothly, to make them feel successful, to make people feel seen, valued, heard. I needed to be there to ensure success. Now, around COVID, I kind of lost some of that and was... I kind of woke up to what reality was and how I'm really not that important. My job, if I'm doing it correctly, is other people can be successful. I'm just the leader. I don't have to be the leader and the doer, right? I mean, it took me a while to get there, but I got there. But the loss of identity can be a real crisis to people who find themselves in a sudden onset of caregiving. I never really created my identity because my grandmother and my care and love for her kind of were ingrained in my identity. And then when I started working into senior living, that became my identity. I was an executive director inside of the senior living community. That was my identity. So if you are not, have not been prepared to become a caregiver, all of a sudden when you are... put into that situation, the loss of identity can certainly affect you in a negative way. And the mindset that we have around that loss can bring a lot of resentments. And if there's one thing that I've learned through my journey is that when we carry resentments, that is where burnout comes. The heavy load of fighting a silent battle that is full of Negative energy towards somebody and they don't even know it, that is unhealthy. So awareness to me is number one, be aware that you feel lost, that you feel uncomfortable, and that may, you may be fighting this change internally when you really just need to learn to accept it. One of the hardest things in life is to, excuse my French, suck at something. And when you are not used to being a caregiver, you're going to really suck at it at the beginning. You're, you're going to be okay, like the first couple of days, and then you're going to get tired of it because you're expecting somebody to be something that they can't be anymore. Especially if we're talking about dementia, but even from the physical component, when their care is more physical. It's going to be difficult because you're going to want them to get better so bad that you're gonna get angry that they can't if you're not careful. So I think you have to create this new thought process around identity and care caregiving, because caregiving is not forever, unless you have a special needs child. My role as a caregiver to my son who is a special needs child. will be forever. I have just come to the conclusion that that is what it will be. And if it's not, I will be so happy. But I don't want to fight this notion anymore that this is only for x amount of years because then that sets expectations up that are not realistic. So, If it's just your loved ones, your elderly loved ones, your caregiving journey is not forever. And if you choose to keep them at home, it may be for a while, it may be for a long time, but it's not forever. And if you choose to move them into a senior living community, your caregiving role changes, but it doesn't go away. So your identity needs to become, you're less of what you're used to. Because there's a short term pause in that because now this person needs my help. And you are the one that determines how long that is. So when we fight and resist the needs at hand, that can be the struggle that can spark the negative energy that we just get tired of dealing with. Because it's usually not the person that we get tired of dealing with. It's usually the story that we tell ourselves about the situation and the fights that we have internally. So yes, the loss of identity is hard. It's not forever, for most of us. It's not forever. And how you frame that and what solutions you look for to keep your old identity back in your life, right? So my parents, my mom used to like to dance and when my grandmother needed more help, we just really sat down and talked about what she had going on and when I needed to step up and then when she needed to step up. And so the identities... could remain the same within the context of a caregiving role. Sometimes we have to quit our job. You know, when my son was home from the hospital, I didn't work for two years. I lost the only identity that I had that mattered to me at that point, which was being an executive director of an assisted living community. And I lost it to become a mother of a special needs child. And let me tell you, that identity was a difficult one to wear. I fought that one for a minute, but it's who I am, you know, it is who I am and who you are as a caregiver is a new identity that you can put on. And when that role is over, you'll be proud of it as long as you don't resent it. And if you feel like you're resenting it, there are things that you can do to change the mindset. Ask for help. Plan ahead. There are many people out there that can help you, um, that could be family for free, that you could pay for sitters, you could find senior living, if they're on hospice, you can find, respite relief. There's lots of organizations out there that can help caregiver burnout. But just don't fight it from an emotional identity place. Thank you. Because this too shall pass. And you can actually reframe it for, I have X amount of time with this person, so I'm going to enjoy it while I can. It's going to be difficult. I'm going to have to say no to a lot of different parts of my life, but it is not forever. That will help you release the resentments, the loss of identity, and help you regain a positive form of identity. Another element to burnout and overcoming it and being proactive about it, to me, is the emotional and physical demands of the job. it's one thing if you just bring dinner to your loved one or come and get... Get them in or out of the shower a couple times a week, or you're just checking in and saying, Hey, and it's another process altogether, another experience altogether when you have to be responsible for their care. Caregiving. At that stage of caregiving is mirrors parenting. And so whereas you may be anywhere between 20 and somewhere in your 40s with kids less than 10 years old in age, you could be anywhere between in your 50s all the way up to your 70s, to where you have an elderly parent, aunt, cousin, whatever, who needs your help. In the same way, but different, of course, than a child would. When we age backwards, Which, if we're lucky enough, that's what we get to do. You can find yourself in some very interesting predicaments. And the physical demands can become too much for somebody. And the emotional demands can be too much for somebody. I mean, we can talk about this topic so deep. But, when someone has to lift somebody to transfer to the bathroom, to... The bathtub, to the shower, to the toilet, to get dressed. You physically have to be able to meet that need. When your loved one has dementia and the body of that loved one is fine, but the mind is requiring a lot of emotional patience from you, that's a lot to deal with. Ask me how I know. Having a child with autism. And having a parent with dementia is the same experience, just in mirror images of each other. I have to hear the same things over and over again, the same way. Get frustrated the same way. You get frustrated why they don't know how to do what they should know how to do or what they've known how to do their entire life. And it requires a level of compassion. And patience, that to me is super human and I don't always have it. And you won't always have it either. And this is where my favorite phrase comes in and I have to remind myself, this is how you give yourself grace as a caregiver and as a parent. All that I can do is my best. And if my best isn't good enough, then my next step is to find. Someone else's best, that's good enough. And if I am about to lose it, I'm going to allow somebody else to step in and handle the care. And that is where a good partner, like a sibling, or a cousin, or a spouse of an elderly person that you're caring for, y'all can take turns and tag team. For me, clearly, it's my spouse. And my mother, honestly, those are the people that I have that I can depend on, and a few people that if they came over, that could allow me the time just to walk out of the house and be okay. Because my son requires a lot of patience that a lot of people don't have. So. Being aware of the emotional and physical demands and then being aware of how you're thinking about them and how you're beating yourself up about answering the wrong way or being frustrated at them. All those are important because if we constantly beat ourselves up about things that are outside of our control, we exhaust ourselves emotionally and then we are no good to that other person. Listen to me. It hurts. It breaks my heart that my son is different than the majority of the people his age. If I dwell on that, And I get angry every time he proves that point to me, I am no good to him and I am no good to myself and I am no good to my daughter and I am no good to my spouse because I am in a vicious thought loop that prevents me from seeing the joy that he brings to my life and everything that he has taught me about what's important in life. Because really a caregiving experience simplifies life. In a way that is appreciating ordinary moments. That if we don't allow that to be in our life, we forget how happy and how joyful life can be. The emotional and the physical demands are high enough to where I would say you as a caregiver, me as a parent, you as a parent focus on your health first. I cannot tell you how many times I have seen elderly spouses, elderly children of an elderly caregiver who are so worn out. That they are worse off than the person that they're caring for. Now, I just want to say, what happens to the person that needs the care when the caregiver can't do it, or has a heart attack, or falls? Real bad things can happen. I've seen it. So, take the time to care for yourself. That's both a physical and an emotional self care. Which, everybody says a lot, but it's really important. Take walks, workout videos on YouTube for free. Go to the YMCA. Find an adult daycare that gives you some breaks locally in your town. Do what's required to maintain your health, both emotionally and physically. If you don't, you will run into a wall. And give yourself grace. You are not going to be perfect all the time, but when the bad things happen that you're ashamed of more than the patience and the good things, you need to understand that that's a sign that you need to re evaluate what you're thinking in your mind, how much time you're devoting, and how much time you may need away. Be aware of the patterns. We've talked about the emotional demands, right? You have, or what they require from you. But let's talk about the emotional impact this has on you. The demands are different from the impact because the demands are somebody is like literally demanding you to have patience, to have long suffering, to be kind. That's a demand when you're in a parenting and a caregiving role. But what about the impact on you? It is heartbreaking to watch somebody you love diminish in capacity, whether it's physical or mental. It's heartbreaking when they can no longer do things for themselves in a way that brings elements of shame and disappointment. That is sad. And there are times where we have to hide those feelings to keep dignity intact. And then there are times where we need to walk away and cry and scream it out. And you've got to let the emotions out. Because if you keep those in... One day you're going to let it all out and it's going to be brutally honest and harsh to everybody around. And I think that that's a lot where the resentments come in, where you resent yourself for not feeling it, where you resent other people because they're not around. You know, the emotional impacts are hard. And one of the things that I have learned, if anything through this journey is allowing ourselves to feel the feelings that we feel. And be vulnerable in those moments is one of the most courageous things that we can do. There's no room for shame in caregiving. When you have so much shame surrounding your relationship with the person you're caring for or your children, you lose the ability to connect. And connection is what caregiving is all about. So these thoughts of I am not enough, I should have done this, and I should have done that. Those are shame statements, and they need to go away. You lose the ability to connect with people. Instead of, I am not enough, I am doing my best, and I am continually improving every day. Instead, I should have, well, now I know that feeding him eggs is not the right thing to do because of this. Instead of, I should have known not to feed him eggs. Stay away from the word should. That is shame inducing and losing connection, lack of vulnerability attitude that we cannot have in caregiving. You are not going to be in control in every circumstance inside of our caregiving relationships. You will have to lose the desire to control everything. There are times where what you can control needs to be controlled. And there are times that you can never plan for what just happened. The idea of control and perfectionism is again a sign that you are avoiding vulnerability. And burnout and overwhelm and anxiety is just us trying to fight vulnerability. The caregiving and the parenting role is... One of the most vulnerable roles that you could ever be in. You cannot control every aspect of the situation. You cannot be rigid in it. You cannot be certain about anything. You just have to be able to identify what you can control and to let go of what you can't. You can communicate very well with people. You can take down notes, you can write down, identify patterns and communicate all of those notes to the people that matter, that can help you with caregiving plans, with medications, doctors, nurses, all of those, those are things you can control, but you cannot control moods. You cannot control advancement and diseases. And you cannot control how you feel about any of that. You can just control how you think about it. And that is something that most people ignore. That's where the power is. That's where the success is in caregiving and fighting the overwhelming burnout battle. One of the things in leadership that I've realized, and even in parenting, because obviously parenting and caregiving has the same elements of leadership, and that's that we have to make ourselves more valuable so we can give value to other people. I think pretty much every personal development and leadership development coach says that, but John Maxwell is who I first realized the concept from. And it's true. You know, it's a, it's a good professional take on the whole oxygen mask and the airplane, which really is used so much that we forget how powerful that statement is. And I made reference to it earlier, but if you expect to care and be the best parent or the best caregiver that you can be, you have to make yourself more valuable. You cannot continually give to other people. And not give yourself more. So how do you make yourself more valuable? Well, one thing is you have to identify for you what success is. And I think this is something that most caregivers and parents, and really people, all people do wrong. What does success look like to you? Not to me. Not to the person down the street. What is success for you? For your loved one? For my son, throwing a big birthday party, where people are, a lot of people are around, is not successful. It doesn't go well. I've tried that. Success for him at a birthday party. is going to a place that he wants to. Lots of rides, um, quiet, that he gets his favorite things, that he gets what he wants, when he wants it. Lots of love and attention from a small group of people that love him. That's success to him. That's not success to me for a birthday. I feel successful when I give that to him, but I can't do that same birthday idea with my daughter because she has a different definition of success. So, how you make yourself more valuable is to know what you want, what you need. A break? A day off? Two days off? How do you plan that? To go to an event, and so you make sure that you make plans to where you have a babysitter, if you're a parent, or you have somebody who comes in and sits for your loved one, if you're a caregiver. To where you read books, you listen to podcasts, you listen to YouTube videos on ways to make behaviors settle down, uh, identify the patterns that you see, write down notes, um, have open conversations with people, talk to people to see if they are giving you the same idea that you're on the right track, or there are different things that you can look for. Look at and listen out for that, that may help the situation. All of that makes you more valuable. So you then can give more value to others. Sometimes we feel like we don't have support. Now, there, you could be one of six kids and still feel like you don't have support and you could be an only child and feel like you have no support. So just so you know, everybody feels like they have no support at some point. And that may be true. That may be a very true statement. But what I'm going to ask you is when you say that about yourself, how does it make you feel? And can you reframe that thought to Something different. I have no support can be a very limiting belief and so therefore you're already defeated when you say that. But you can also reframe it to, I was not blessed with siblings to help me through this journey but what I can do is learn as much as I can and try to figure out how I can bring some added support here. I don't have the support yet that I need but I'm currently working on it. That's giving you the credit that you deserve. It's giving you the grace that you deserve. When we repeat a negative statement to us over and over again, we believe it. Because again, there's a difference between the story of the circumstance that we're in, and how we narrate that story to ourselves. We are all resilient people. We have resilience built into us. One of the things that we have to determine is, is it time to be gritty and put our head down and just do it? Or is it time for us to intellectually persevere and really assess the situation and say, do we need to look at another avenue to find success here? To pivot, to say, I have reached the point that I have done all that I can do, and now we need to look at senior living, or in home sitters, or what other adult daycare, what other options that are out there. That's not failure. That's being honest. Failure, to me, is isolation, it's ignoring warning signs, and Trying to stick something out that isn't healthy for anyone. Grit alone is not resilience. Grit comes when nothing is going to change. Where I'm just going to get this done real quick, or I'm going to, if we're in a basketball game, right, I'm just going to put my head down and I'm going to keep on going because there's really nothing else that we can do beside play basketball. Right? But when you actually intellectually think about the circumstance that you're in and realize that putting my head down and working towards this outcome is not healthy anymore and we need to make some decisions about how to get healthy again, that is resilience in a very intellectual and positive way. So that's how you determine whether or not. So that's a great way of explaining how to identify when to keep going and when to give up, when to keep going, and when it's time to make and consider other choices. How healthy is the situation physically, how healthy is the situation mentally, emotionally, and what financial. considerations do we need to take into account to make this a healthy situation. I have seen so many people endure such hardships when they didn't have to. Because yes, people want to tell you, I don't want to move into a nursing home or I don't want to move into assisted living, but I want you to know that there have been more times than not, I, the sentence, I wish I would have done this sooner. Because you don't know what you're gaining until you actually know what you're gaining. It's sad at the beginning, yes, but oh, if you find the right community, it can be life changing. Yours and theirs. So, the moral of my story in this podcast is Overwhelm and burnout can be prevented can be stopped and is worth your time in evaluating. It is the games that we play inside of our mind. Those silent battles that you're fighting with people and they don't even know it. How we are treating ourselves and knowing when we need to stop and find other ways to do it is better. Before it gets too late. Thank you for your time. I'm always available if you ever wanted to talk and have guidance. Um, I have so much experience through good and bad, to draw upon. And I am certainly available if you need any help. I appreciate your time today. I hope you have a great one.