Take Heart

Practical Tips for Thriving in Prolonged Caregiving

• Amy J Brown, Carrie Holt and Sara Clime • Season 5 • Episode 171

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Long-term caregiving requires a mindset shift for our emotional life and our relationship with God and others. Carrie, Amy, and Sara discuss practical tips for surviving and thriving long term.  They discuss spiritual practices, practical habits to avoid burnout, and mindfulness to address the stressors and difficulties that come with caregiving. You’ll walk away with valuable tips you can begin incorporating into your life right now!

Ep. 171, October 1, 2024

Key Moments:
[6:39 ]  Our permanent situation and loss of dreams
[13:25] Where was Jesus in that moment?
[21:22] Caregiving is worship
[28:35] My roles and my boundaries
[36:51] Accepting help

Resources:
Interview with Laura Hernandez
Episode 157
The Place We Find Ourselves Podcast: Free Therapy!
The Allender Center Podcast

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Hi there. It's Carrie. I'm here with Amy and Sara, and we are all together today, recording this episode. You’re listening to episode 171. If the sound quality is a little different than normal, that's why. We're going to have a lot of fun today recording this episode. We're so excited to be together and share what we have for you today. 

This month, we're digging into the topic of practical rhythms for thriving in prolonged caregiving. A few months ago, my husband and I were having dinner with some friends of ours who have been going through some rough health issues for the last three or four years. The husband asked me an interesting question that made me think about how this applies to us as parents and caregivers of children with disabilities. His question was this, “What advice would you give to someone when dealing with the permanency of a diagnosis or situation?” 


I know for a lot of us at the beginning of a diagnosis or behavioral event or trauma, we're really in adrenaline mode. We're putting out fires, kicking butt, and taking names, so to speak. Sometimes, there's this hope that our kids will get better and that maybe something will be healed, or we won't have to deal with a certain long-term effect; maybe it's a long-term behavior, a long-term medication. One day we realize that this isn't going to change. This is our forever. What worked during survival mode, the high stress, the high trauma, isn't necessarily good for the prolonged type of caregiving that we're going to need to do. We need some practical rhythm so we aren't sacrificing our health, our relationships with God or our spouse if we have one, or our other children if those are also in our family. We need practical rhythms to thrive in the permanency of our situation. My first question for the three of us today, ladies, is when you realized that there was a specific diagnosis, maybe a new health thing came up, a behavioral pattern that wouldn't go away, how did you react emotionally? 

Sara: Honestly, for me, I think it's a little different because we have to take into consideration TJ's shortened life expectancy. I remember at the beginning of the diagnosis saying so many times that I'll just take them however you'll give them to me. Just however you want him. I'll just take him for as long as you can give him to me. But I realized that that wasn't necessarily a healthy way to look at it because I wasn't allowing myself the chance to look long-term. With his diagnosis, he's constantly changing. He's continually deteriorating, so we don't have a lot of time to get used to one thing before something else changes. We have to navigate it in a way where it's a healthy balance between we will take him how you can give him to us, and then not looking too far ahead. We can't look too far ahead because that's that’s the nature of his diagnosis. If I constantly think  will he be walking next year? Will his heart rate go down in six months? Most likely it will. How am I going to handle that? I take away the other five months and 30 days of enjoying him how he is, if I'm constantly worrying about what's coming next. 


If you're in a similar situation, I think it goes for anybody. Stay present in right now and think this is the situation for now. At least that's what we have to do is not to look too far ahead. 


Carrie: Yeah, that's good. 


Amy: I guess I would say that it's different for us too. It's different for everybody. When you have a kid with behavioral issues, invisible disabilities, you don't get a straight diagnosis a lot of times. There's also a moral value placed on their behavior, so there's a lot of shame and fear around how they present to the world and the unknown of what's going on with them. What am I doing wrong? I think when we first went down this road, I had a lot of fear because I kept thinking 10 years down the road, 20 years down the road, are they gonna be in prison? Some of the behavior, if they kept it up, very possibly they could be; are they gonna commit a crime? What am I gonna do? There was a ton of fear in those first several years. It's hard when they are in the midst of a two-hour rage every single night at bed, even thinking about how I'm going to handle this for the rest of my life. One of the things that I tell moms I work with is the brain isn't mature. Even though their behavior is really extreme, the brain's not matured yet. You don't know what next year, 10 years down the road is going to look like. I wish I could have gone back and told myself, okay, take it one day at a time. I know this is challenging, but you don't know how it's going to play out because like I said, the brain's not mature. There's trauma. There's some things that you can't fix obviously with brain trauma. For example, fetal alcohol syndrome, you can't reverse that. There are a lot of other things that change with maturity and intervention. But in the moment of a two hour rage, when you think I can't do this every night, you don't think that way. 


My encouragement, I guess, would be instead of saying, how am going to make it, say, like Sara said, be present, one day at a time and try not to forecast what's in the future because none of us really know. That's easier said than done.


Carrie: What I hear you both saying is just don't project what's happening right now into the future because you live in fear. A lot of the negative emotions can steal the joy of your current situation, your current day. I think for me, I have struggled emotionally with the long-term permanency of the situation when it's been giving up dreams. For instance, giving up the dream. There's hope always in the middle of a situation. Well, maybe he won't need a trach or maybe he'll be able to walk or maybe he'll be able to keep walking. Maybe if we try this therapy, the child's behavior will get better. When that doesn't happen, you're having to deal with the disappointment of God didn't answer my prayers in the way that I thought he was going to. I have switched to a little bit of cynicism. I was reading a book recently and the author had the question of, “What have I stopped asking God for:  It's almost like after a while, when you're in the permanency of a situation, you start to resign yourself to the fact that, this is the way it is, I'm just not going to pray about this anymore. We kind of build up these walls of protection, but then we can get really cynical in trying to protect our hearts from the future. We forget to hope or we lose hope sometimes, I think. Emotionally for me, that's the struggle because I don't want to not be hopeful, but I also don't want to be disappointed when things aren't going to be healed. Do you guys have any thoughts about that?


Sara: I think for Christians, specifically, it's difficult. There's a fine line between God's got it under control. He already knows the days that are numbered. He knows TJ's life, and cynicism of: God's going to do whatever he's going to do anyway. 


Carrie: Why pray about it? 


Sara: I have to remind myself, he's still listening to me.It's not a laundry list or a grocery list of God, need you to do this, this, this and this, please pick up an extra two years. It’s more of God, this is the conversation I need to have with you and this is what I'm struggling with. 


Carrie: I think there's a tension too, between what is in my control and what, how can I affect the situation and how much of this is in God's control? This is a continual struggle in our lives, in general as, as moms. I'm sure Amy, you experienced that too. 


Amy: I would say when you were saying the cynicism, it was making me think of, I noticed this in myself when my kids were younger and in some of the moms I mentor that they're getting ready to go to a new school year or summer camp. We are just thinking of every way it could go sideways because a lot of times it does. 
I was saying to somebody, what if we asked, “What if it goes well?” Because I was noticing when it went well, it didn't even register. I was just thinking, OK, it went well, but the next time It's not gonna go well. As Sara said it’s that fine line of, is the reality of our life. I don't want to be cynical. How do I dwell in hope? Maybe not hope that it's all gonna get better, but maybe the hope needs to be it might be okay today. If it is, I want to have the eyes to see that because I don't always see it. Because I'm in such damage control mode constantly. Does that make sense?


Sara: I think we often forget that our children are not the only ones with trauma. As the caregivers, we have trauma. And so like you said, what if it went well? Well, that's not our bodies and our minds natural response. Our mind and our body are like, yes, but how many times have you been brought to your knees, literally and figuratively by the behavior or by the newest diagnosis or outcome or whatever consequence of this medication or this clinical trial? There's so many things there. When you were talking, it reminded me, this whole thing reminds me of the Alcoholics Anonymous Serenity Prayer. It is:

“God grant me the serenity to accept the things I cannot change; courage to change the things I can, and wisdom to know the difference.” I love that serenity prayer because it works in every aspect of life because in this certain situation, it's like, okay, just help me accept the way it is, and maybe today I can just relax when it’s good. If the bad comes to trust ourselves enough to know that we have handled it time and time and time again. I think for me, the memory of realizing TJ's diagnosis that was so traumatic, and I think I'm just trying to prevent myself, even though I know his heart will decline. I don't want to be caught unaware. I think that's the hardest part. You don't want to be caught unaware in a rage. Let’s be honest, you're not going to be caught unaware. You know it's coming at some point. I know TJ's decline is coming at some point. Again, I think it goes back to staying present. Trying to stay present as much as possible. You can't, because you have to plan ahead sometimes.


Amy: But also that hope, I think, is that small hope. It would be ridiculous for me to think she's going to camp, she's going to be great all week, and she'll be camper of the week, or she's going to burn the camp down. What about the middle? Like we made it to day three or I wasn't stressed when I dropped her off. I think it's paying attention and that's part of being present to the small, I don't wan tto say wins, bu the small… goodness, the goodness along the way. I think because probably has something with our brain chemistry and everything: that fight or flight is always on that we miss those small moments a long way. 


Carrie: I was thinking about just all those years of Toby going into the hospital over and over and over again with back surgery and issues with his rods. It's so hard in the moment to not mentally prepare yourself. I would notice something at home was going to happen. Then shoot, I've got to call the doctor. 
This is going to mean another surgery. And then all the self -protective things come in, which is good. But at the same time then you lose sight of the goodness and presence of God. One of the things I've realized lately is that when we're trying to control everything, we're actually providing so much for ourself that we're not allowing God to provide for us. I feel like that's missing His goodness, His presence with us in those situations. 


Amy: I think reflection is the key here because if you’re in the middle of a hospital stay you're probably not going to do that unless you have a break. In a rage, I'm not thinking, oh that's so good. 


Carrie: Let’s be practical here.

Sara: Tonight wasn’t as bad as last night, everything is just peachy.


Amy: I'm just wondering if reflection might help. You and I have talked about this with us before: where was Jesus in that moment? I'll let you speak more to that because you were the one that were talking to us about that. In this week of, I'm just using camp as my analogy. Yesterday, where was Jesus or where where was he? Even if in the morning bright and early or at the end of the day, we just think about it for a minute. I think that helps retrain our brain to look in our souls and spirits to look for that goodness. 


Sara: I don't want to put words in your mouth, but using the camp analogy, you could spend, say, camp is five days and let's say your child only makes it three before they burn the place down. I mean, I'm kidding, but not kidding. Let's just say, if you were like, well, I knew it. I knew it. I knew they weren't going to last all five days. I knew something like this was going to happen. You missed out on the three days that you could have been resting. Then it could have been like, okay, I knew this was going to happen, but we made it three out of five. I don't like to say glass half full because I think your cup is refillable. God refills your cup every day. New mercies are new. But I don't know. Is that kind of what you're saying? 


Amy: Yean, and I would say that I have been in that mode. Well, I knew this was going to be a miserable failure because of all the judgment and shame on me for her behavior and for my son's behavior. It's really hard to get out of that scarcity mindset. I don't even wonder if I know this is I hate to say this because we already had a million things to do. But could we have some kind of practice before an event that we know, okay, this is the event, we're going to camp, we're going to the hospital, but here are some practices that are gonna help me stay not cynical or more present. I wonder if something like that would be helpful because I think sometimes the path of least resistance as well I’ll be cynical, because, I don't mean that to sound harsh, but I think that's just kind of.


It's her life. She's never made it through camp the whole time. 


Sara: There's an element of protection in that thought. Protecting our own disappointment or... 


Carrie: Protecting ourselves from grief too and sadness. 


Sara: Or even uncomfortable feelings towards God. Because how many times I'm like, God, seriously? We couldn't have made it this one holiday season without a hospital visit. Those kind of thoughts are uncomfortable. Even though we have then, God knows that we have them, But if I am expecting trauma during the Christmas season, then I don't necessarily have to lean into, why did you do this? I'm like, well, no, I did. And I was prepared for it. I think there's an element of safety in it. False safety. 


Amy: I think it's Brene Brown. And if I'm wrong, sorry, Brene. I think she said, Joy's the hardest emotion and hope is the hardest emotion to have because it's really vulnerable. I thought about that a lot. I want to speak to what you said is: I've heard a lot of adoptive moms, you have to choose to adopt and it ain't easy. A lot of us felt called to do this. Like God called us to do this. Then it looks like this. That is a really hard thing to reconcile with your faith. I think there's some faulty theology around. If I just do all things God tells me it's going to be good. I think it goes back once again and I'll preach this forever that we're his beloved. He walks beside us and back to what Carrie says, “Where's Jesus now?” When the camp calls, when we're at the hospital. Also He's here now when things are going well. One of the things I did when my kids were younger is I would always pray, Lord, I'm not with them all the time. Please make me aware of the windows of their soul when they're going to be vulnerable, so I can tune in. Let's not forget about the Holy Spirit's power, people. That’s the prayer. Show me. Make me aware in my spirit. The roof isn't falling in right now. This is a small moment of joy, and I want to have the awareness of that. We can try to make a schedule, I'm going to try to find joy, but no, I think it's, we forget about the Holy Spirit and how the Holy Spirit works in our souls. Ask God, please show me, make me aware of these moments. Yeah. That's an important...


Carrie: It's funny because we've transitioned into kind of my next question about a rhythm of in our spiritual life. And I'm hearing a couple of things here. I'm hearing that we need to ask, where's Jesus in this? We need to have the spiritual rhythm of reflection and asking the Holy Spirit to show us in this situation - to be able to pause and rest in these things. Are there any other spiritual rhythms that you feel like for the long term are going to help us have energy and be able to not burn out? 

Sara: One of the things that I have really started to lean into during the good, bad, hopeful, hopeless situations is imaginative prayer. For me to sit down for five or 10 minutes, or let's just be honest, a minute. I will be praying. I'm gonna do this, I can do this, I love God, He loves me, I want to talk to him. Then a minute into it, I'm thinking the milk's sour last night, and I need to prepare dinner tonight. All of a sudden, I'm up getting that.I can so easily lose track. One of the things for me is realizing that I don't have to be on that one chair at five o’clock in the morning when it's dark and quiet, and I have the pretty blanket and I have my Bible open, and it's this lovely time. Now there's nothing wrong with that, and I strive for that. I would love that, but that's just not my life. Mine looks more like I'm in the kitchen preparing vegetables or preparing food, doing all of the things. I picture Jesus standing with me.  like it goes back to what you said, where's Jesus in this moment? Not only just picturing him there, but understanding He is with me even when I'm preparing all the food, right? Or I'm getting all the medications together. That's when I will have a conversation with him. I picture him with a cutting board with me. What would he be saying to me in this moment? He would not be floating above me with this light. Jesus would be cutting the carrots because I need some help to cut the carrots. That's what I'm gonna be like, okay, well God today, this morning, this is what happened. How can I handle that better? How can I lean into you next time? I picture what he would say to me. We are driving to physical therapy for the 850th day of that month. Which our moms can relate to.  I have to deal. I think it's this physical therapist. I know that they don't listen. Instead of being frustrated, God's riding shotgun with me, and he is just like, OK, so here's what we're going to do. Yeah. It's that conversation of, OK, what do you want from me in that moment? And I picture what he would say to me. Sometimes he's very, very quiet in that shot-gun moment. He is very, very quiet. And then I'm like, okay, I can't do this on my own. You got to give me something because my mouth is going to get ahead of me, which is usually what happens. That has been a really big lifesaver for me, and I can't quiet my brain ever.  It's constantly moving. Imaginative prayer helps.


Carrie:  It's having that ongoing conversation with God throughout your day that he is here and acknowledging his presence. He's living inside of us, so he's always with us. But it's being cognizant of I can just talk to him like we talk to a friend. Another thing I thought of when you were talking, Sara, and sorry if I cut you off, was just, I had a situation this summer. We were at our family camp. Every night at the end of family camp, most nights, they have something called En Gedi, where it's a half hour in the tabernacle. It's completely dark, and they're playing soft praise worship for people to sing, quiet their hearts. There's a lot of college students, and they're serving all day long and it's really for them for their time to quiet their hearts and gather their strength from the Lord to serve the campers all day long. As campers as attendees we can go to but, and sometimes people are kneeling. 

It's just a beautiful time of rest and quieting your heart for the Lord. This particular night I really wanted to go to En Gedi, and my husband and I were in different places He texted me and said, I'm already at En Gedi. Well, Toby comes back to the house we're staying in, and he had a medical thing I had to take care of. I was mad because I wanted to be at En Gedi. In my mind, I said,” Lord, I just want to be at En Gedi because I want to worship you.” The Lord said to me, you are worshiping me. You are worshiping me. Everything we do for our kids. There's a verse in the New Testament that said everything you do, to the glory of God where you eat, sleep, you're cutting carrots, you're driving your kid to therapy. I think we have to change our mindset in this prolonged caegiving, we want to get this done so we can go do something else for God. We want it, but what we're doing, everything we do is an act of worship to God. Hooking up the meds, hooking up our kids' g-tube to give them meds, intervening in a behavioral situation, driving our kid to physical therapy. I think the spiritual rhythm of this problem caregiving is seeing our situation as let's just not get through it so we can do something better. This is what God has called us to do. 

Maybe that would help moms in your situation who felt called to adopt, and it didn't turn out the way they thought. But this is still part of the calling and my act of worship is showing Jesus to this child who cannot, their brain cannot absorb it, but I'm just still going to give it to the Lord.


Amy: We interviewed Laura Hernandez a long time ago. I don't know what episode it was. We'll find it and link it. I remember I was in my closet and we were talking. We both have kids who are adopted. She said, people ask me, “Would you adopt again?” She got teared up and she said, “I am called to be faithful to God.” That's not the question to ask me, right? How did we miss this? I'm called to serve God faithfully as a good servant. I just remember the tears because I teared up on the other end because that question has been asked of me. I'm telling you, there are days; I love my kids, but there were days of, oh my Lord, I signed up for this. We have this idea that worshiping God is hands raised in service or on our knees, and those are the ways that it's the rhythm of everyday life where we serve God. It's all the things we do, and I think that's important. I would also say for me, one of the most important spiritual practices is silence. I talk a lot about finding peace before problem solving. Like you said, Carrie, if we just get this done, we solve this problem, then we can go find the peace. Finding peace first, whatever that is, whether that's silence, whether that's… music, praise music, whatever, I think gives us more insight on how to solve the problem because we've quieted ourselves. I practice silence every morning because I do not have a nothing box. My husband does. What are you thinking about? Nothing. What? What is that? My brain never shuts off. I have found that sitting in silence, which I know is not easy, even if it's five minutes and quieting my soul and doing breath prayer, kind of puts me in the space where I can enter the day's problems in peace. Now I may lose my peace 15 minutes down the road, but I start with peace and that has been very transformative for me. 

Carrie: Maybe for our listeners who don't know what breath prayer is, can you explain it? Because they may not have listened to our episodes about breath prayer. 


Amy: Well, breath prayer is where you take a phrase, you quiet yourself, calm your nervous system. Because we're embodied people because of the incarnation, we're not just souls, we're body, soul, spirit. We calm down our bodies and we breathe in a phrase like, God's love, and then you breathe out, is here. Because I have adult kids, they're yours, not mine. That's a good one. You do it for a couple minutes and whatever the phrase is. Sara, you were talking about the scripture thing. Sometimes, I'll see a portion of scripture and I'll pray: His mercies are new. You do it continually do it and it calms our nervous system and calms our soul and it focuses our mind on God. Before we started to record this, Carrie and I were talking about sleep. I'm a terrible sleeper because my brain doesn't shut off. I even do that at night. When my little brain goes, what about this? I'm like, okay, back to breath prayer. You know, and for that is you…help me sleep in peace, that kind of situation. I think that's helpful. 


Carrie: It's the deep breathing too that comes with it. I've been having it, I've been feeling that chest tightness. Things have been so busy in the season and I just try to take the deep breath and do the breath prayer. I'm stressed, you're with me. Be near.


Amy: I think to ourselves a disservice when we divorce our soul from our body, just are entwined because Jesus took on flesh. I think that's so important to remember. All three of us have talked about our nervous systems, and we're not experts on it at all. We can't speak to everything, but we have to start with that. We have to start with that. 


Carrie: Let's switch gears here just a little bit, because we're kind of nearing the end of our time. But I want to talk about maybe some of the practical things that we do to prepare ourselves to not burn out. I guess that's what we're talking about is that burnout that happens when you finally realize  you can't live in the adrenaline mode all the time because as we know, our adrenals are tanked, we get compassion fatigue. What are some of the, just the practical habits or rhythms that you have to last through this long-term, prolonged mode.


Sara: It was episode 154, what we wish we would have known. We talked about the difference between parenting and caregiving. I look at what I do in three roles. I am TJ's mom, I am TJ's caregiver, and my husband, Craig, refers to me as the medical director of Clime Inc. I have things that are Clime Incorporated, I'm the medical director. The rhythms that I set for it is I look at that role as a business. I look at it as medical director doesn't help to be on 24/7. What I do is Monday mornings from 8-10 a.m., I work on taht stuff. That's what works best for me. That’s when I call insurance companies and do medication and what not. 

I would never say that I don't have to do it any other time, but 90 % of it can fall on that Monday morning. Wednesday, when I start to paic, I'm just going to jot that down. I'll do it on Monday. I don't do any of it on Fridays if I can possibly avoid it. No doctor's appointments, nothing. Unless, there's always going to be an unless, but I really try to protect that time. That's some of the things that I can do. I have my own business where I have clients. My clients do not get me outside of business hours, period. If your business is gonna fall apart because I'm not available to you, then I'm not the right person for you. I've let clients go that do not honor that space for me. It was really difficult, especially at beginning, setting up my business, because you're like, whatever I can get. I realized that my evenings and my weekends as a mom are so vital to me that I have to protect it. I think anybody, even moms without children with disabilities or special needs needs to protect it. But I think it's even more so with us because your caregiving will never stop. It's all day, every day. 


Carrie: Your practical habit is setting boundaries. You are good. I've learned so much from you with that. 


Sara: There's a difference between standards and boundaries. So, standards are my non-negotiables, and my non-negotiables are I am not available on a weekend. Period. They can't get me. My notifications are off. I had a client say, “I don't think this is going to work out.” I said, “I think you're right,” and he blew up at me. All you have to do is answer. I said, “But that's just it. I won't do that.” I told you that's my non-negotiable. A standard is something that you will not break—a boundary is just that. It's like a fence that can be moved or pushed aside, or the door opens. That's the way that I have to think about it. People will push back on those boundaries.

Family will push back. One good instance is when my husband asked me, “Did you talk to so-and-so about this?” It had popped into his mind. I said, “Well, I'll deal with that on Monday.” Honestly, it was about a refund we needed from the insurance company, a doctor's office. That's his concern because he wanted to know if we got the money. I said, “I'll look at that on Monday.” He started talking about it. I said, “I'll deal with it on Monday. That's whenever I deal with those issues.” He was very respectful of it. That was a long time ago. Now he will ask if you can look into this next week. His was a legitimate concern. I have to have time when I am not on all the time so my brain can function. That's one of the practical things that I do.


Carrie: I think it's learning to say no, too. 


Sara: No is a full sentence. 


Carrie: You don't have to explain yourself. Amy and I were just talking about how I feel like I always have to give somebody this full explanation about why I have to back out of this or why I have to say no to this. It's because I care about what they think. I don't want them judging me. I'm learning finally and however many years I've been on this earth, like, I don't have to give that person an explanation. I don't have to explain why or how. I can just say, no, this isn't good for us right now. This is a marathon (we've said this multiple times), not a sprint. When you're in prolonged caregiving, prolonged dealing with behavior issues, health issues, all the things that we have to do raising a child with disabilities and special needs we have to have those boundaries and saying no. What do you have for us, Amy? 


Amy: Well, before I say what I have, I want to say to our listeners you have permission to say no, and have boundaries and standards. There's this narrative around caregivers and moms that we must always say yes to everything. 


Sara: Because you're such an inspiration. I don't know how you do that.


Amy: I can hear somebody listening say Sara had that boundary, is she allowed to have that boundary? You are absolutely allowed to have that boundary. 


Sara: It's uncomfortable. I'm not saying it's comfortable. But you have to be comfortable in the uncomfortable of setting boundaries. 


Carrie: You mean you don't need to sign up to help in the area of church? You need to be helping with all the kids who have disabilities. That's kind of been a boundary for me through the years. I've said no because I don't have the margin to do that. Why do I have to provide my own life raft when I'm the one who's drowning? That's been a boundary for me that I've said no to because in the thick of it, you can't do that. Long-term, you're going to burn out. 


Amy: Back to Laura Hernandez. She also said in that interview that she doesn't take her kids to therapies. She goes to the ones she needs to be at, but she has somebody else do it. I think she has an older kid that goes. I was like, what? She made that boundary because there’s always so much of her to go around. I've always remembered that. You said it's a marathon. Yes, it is. We have to take care of ourselves. Our well -being matters. I want to say this because I know not everybody can afford to do all the things, but start small. A couple of years ago, I listened to the podcast The Place We Find Ourselves by Adam Young. That was my therapy for the summer. I cried my eyes out. It was a thing. Try therapy, spiritual direction, calming your nervous system work, even if it's a podcast, an article, or an actual therapist you talk to - you have to take care of yourself. So many women I know that are older, like me, and they've just ruined their bodies. We would all say that we have ruined parts of our bodies. Maybe not by transferring kids, I mean, that happens too, but by being on all the time. 

If getting to a therapist or doing all this work sounds like too much, start small. You have to get the narrative that my well-being matters, and it's not selfish to take care of myself. You wouldn't want your doctor not to sleep before he did your surgery or never ever take care of himself. You wouldn't want that. We need to stop the idea that I'm a mom and I have to lie down in front of a bus for everyone. I think we have to say my well-being matters. That's a hard hurdle. Coming on this side of it, I'm going to tell you, I think you'll save yourself a lot of heartache. Do the things that help you not burn out. 


Carrie: If you are listening, and you can't afford therapy, whether it's money, time, or space to see a counselor, Amy, Sara, and I highly recommend The Place We Find Ourselves podcast by Adam Young. We’ll put the link in the show notes and a little more. Another podcast that, I guess, is kind of heady, and sometimes I have a hard time following his train of thought, but it's the Allender Center podcast. The thing I love about both of those is I believe still all the episodes are there from day one. They haven't archived them; you don't have to go back and pay for them. I understand why some podcasts do that, but it drives me crazy. You can start on day one or two and follow through their process. Another thing…Bruce and I discussed is that you have to be willing to accept help. Ask for help because you cannot do this alone over the long haul. I know some families don't have family to help. They're not even in the same state as their family, and it's hard because you're opening yourself up to be vulnerable. Sometimes, people come in to try to help, then judge you and say negative things to you because they still don't understand your situation. You've got to leave that in God's hands. Pray, ask the Holy Spirit. He wants to give you the margin you need to take care of your body - to have the rhythms. I think about the marathon and the fuel we need during a marathon. Water, those gel things, or, you know, I love the LMNT salt and the hydration-type things. You need to figure out what fuels you and accepting help can fuel us too. 


Sara: It comes down to being flexible. I am a huge proponent of therapy. It's something that we have always budgeted time and money. When my son was in school, I could go to therapy while he was in school. Now that he is home, he has to come with me. Well, I won't talk about what I need to talk about in front of him, so I stopped going because there was no other option. I remember having a conversation with my husband, and he said, “Okay, this is vital for you to go. What do we need to do?” He has to take time off work or work from home, and then he'll go into work later. I remember having such guilt about that thinking he's going to use his time off, or he's going to have to work from home and that's inconvenient. Somehow I thought I should have to be able to do this. I thought, no, I've lived without it for a while because and that’s how it had to happen. Then somebody said, I think you need to go back. It was a friend of mine, who's sitting here. it's a good to have your friend say you need therapy. 

Those are the good kind of friends. Have you been to therapy lately? I went back and I told Craig, I guess this is something that we need to figure out. I had to be flexible for a season where it wouldn’t work out. It wasn't going to work out, and it had nothing to do with time or money and had everything to do with accessibility and whether or not I could even make it there. My husband even said (and this is kind of funny), “Well, why don't you have one of the grandmas (my mom or his mom) go to therapy with you?” My first thought was I don't know what you're talking about. (I know they both listen to this, and it has nothing to do with them), but I need time to myself. The ideal therapy for me was that I had some time before I might go get a cup of coffee. I would go to therapy, and then I would have to drive home and then. I could decompress from it. I can't do that anymore. I thought, I'm not leaving therapy to get in the car with my mom or your mom, and I'm a hot mess because sometimes I pray. But then I thought, why can't they sit there with TJ and I can say, listen, and set that boundary ahead of time. I don't talk about anything. I don't even really want to talk. They might not like it. They would be fine with it. Maybe you have a situation where something would push back on that boundary and keep talking to you. I don't know. I just say, be flexible, but your boundaries are your boundaries. It might have to be shifted.


Carrie: One of the things that Amy said to me earlier was the difference between responsibility and integrity. Will you explain that? I think that's very good. It's such a nugget of truth.


Amy: I'll try to make this quick because we're wrapping up. But I am a highly responsible girl. I've been put in that position since my family of origin and because of my life. Responsibility means I always have to show up and do everything. My therapist asked me if responsibility is a core value. I said, “ No,” it's just the role I've been given in life.” We changed the core value of mine to integrity. I will always act with integrity. I know that about myself. That's a really deep core value in me. So when I come to a situation, let's say that I've been asked to do something. In the past, I would think, I have to do it because I'm a responsible girl, and I'm getting lots of brownie points for being responsible. But wait a minute, I have to act with integrity towards my family and towards myself. I'm going to say no. That mind shift has changed me so much. A friend of mine said (this is a bad analogy because I don't know baseball, and I think it's boring, sorry, people, but I do), “You go up to the bat and you hit it out of the park, every time. You never just sit on the bench.” I'm like, yeah, because who else is gonna hit it out of the park? That was a mindset shift. That's me trying to be responsible when I really want to act with integrity. So sometimes acting with integrity is me saying no. 


Carrie: I think we feel that way as caregivers. We feel like we have to do it all. Our spouse can't do it. Grandma can't do it as well as we can. We have to realize what we should be responsible for and what 


Amy: We need the Holy Spirit for that


Carrie: Yes, we do, Amy. Will you close us out on prayer? Thank you for this conversation today. I think it's been rich. I think it'll be helpful for our listeners and just some of these practical rhythms for dealing with the permanency of our situation as caregivers. 


Amy: Lord, thank you so much for your loving kindness and all the ways that you were with us. Please give us eyes to see and ears to hear the hope and the goodness that you bring into our lives. Help us to always remember that you are in the room with us. You're with us wherever we are with our children. I pray for the moms who are listening more that they would feel loved and seen by you, and that they would be able to understand that they get to say no. Give them strength as they live through this lifetime of caregiving, knowing that you are with them in every step. Amen.