084: My Experience with Caregiver Burnout

In this episode, Lauren shares her experience with Caregiver Burnout and how she is currently recovering from it. This episode is not about how to prevent burnout or a guide on recovering from it. Rather, the purpose of this episode is to encourage you and give you hope that you are not alone in managing the stress, anxiety, and exhaustion of caregiving. Lauren shares what God did that she could not throughout her journey and gives hope for your heart to hold onto. 

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Quick Links:

Abiding Caregiver Facebook Group

If you liked this episode, you may also like:

082: What I Talk about with My Therapist

045: How Our Suffering Points to Our Savior with Meg Apperson (author of Sky Full of Stars)

038: Managing Your Mental Health with Gillian Marchenko

025: When You Feel Like a Failure at the End of the Day

Quotes from this Episode:

Two weeks into continuing Barrett’s caregiving regimen and homeschooling my children (due to covid), my body finally collapsed. I was on the floor in my children’s bathroom with heart attack symptoms as my husband rushed home from work.

Lauren D Crow

We have done what was necessary for our children and we have reached out to God continually for his help. There is nothing wrong with either of those things. I look back and I do not regret how invested I was in my son’s flourishing. The fruit from “sowing in tears” is now here and with it brings time to recover.

Lauren D Crow

I learned through the experience I shared with you here that God has a trustworthy track record. In the good times, in the hard times, He does not change. We have the opportunity as caregivers to experience the nearness and power of God in a way that other people do not.

Lauren D Crow

Through my journey of Caregiving Burnout, I have experienced more than ever before the promise of 2 Corinthians 12:9: God’s power being made perfect through my utter weakness.

Lauren D Crow

Transcript:

Hey friends! Welcome to Self Care and Soul Care for the Caregiver! I am Lauren Crow, one of your co-hosts, and I am so grateful to be spending a few minutes with you today! This community of caregivers is so life-giving to me and I adore being able to connect with you in this way! So, wherever you are listening today I pray this episode is encouraging to you and meets you right where you are in your caregiving journey.

This is episode 84 and in this episode, I am going to share something that I did not originally plan on sharing. In fact, I did not know if I would ever really discuss this in-depth publically, but definitely not this soon. However, I have felt this gnawing at my heart that I am not alone in this and I desire for you if you are walking through this or may in the future, to know that you are not alone. And perhaps for some, this will put language around something you have not been able to exactly pinpoint yet and be a helpful companion in processing it.

Today, I am sharing my experience with Caregiver Burnout and how I am recovering from it. Now, I don’t use the term, Caregiver Burnout, lightly just like I would not use a term like Autism lightly. There is a huge difference between stressed out and anxious, which is difficult enough, and Caregiver Burnout. In order to prevent this episode from being very long, I am only giving a snapshot, or an overview of what led up to my Caregiver Burnout, what that looked like for me, and what the recovery process has looked like so far.

It is important to note, I am not giving medical advice, nor is my information coming from scholarly sources. What I share today is purely my life experience. I desire to share this more vulnerable episode with you, friends, to provide a safe space for you process emotions, and to feel seen and know that you are not alone in how hard caregiving can be since this topic of Caregiver Burnout is not discussed nearly enough.

Ok, let’s dive in!

From the fall of 2010 through the beginning of 2021 marks a decade of the hardest years of my life. Each year within this decade was filled to the brim with loss, grief, and trauma. Not one year went by without tremendous difficulty. In the midst of this decade is when my husband and I became parents, lost a child, waded through the NICU, each lost a parent, both went through career transitions, navigated 8 diagnoses between our 2 oldest children who were born a year a part from one another, our youngest born with a heart defect, and multiple moves – which one was interstate – that’s just to name a few of the highlights. In fact, last year for our 15th anniversary we watched our wedding video and realized that 15 people that were present at our wedding we’re deceased by our 15th anniversary. That was some sort of bizarre perspective.

I give that small snapshot because when the hardest years of caregiving for my middle son, Barrett, who is diagnosed with level 3 autism and an intellectual disability happened in 2018 – 2020, that was coming off all of those things I just shared without a season, or moment, of respite to recover. And that is important to note because my body was obviously running off of adrenaline fumes only. I knew I was stressed, but I did not realize I was running off of only adrenaline for years and I did not understand that I was dealing with anxiety since postpartum with my first son. And this season from 2018-2020 is when my anxiety peaked.

It was during these couple of years that my son, Barrett, was in pain, but I did not know it. I knew something was wrong. So, I became like my favorite childhood detective, Nancy Drew, and desperately tried to solve this mystery for years. Doctor after doctor, therapist after therapist, researching and reading everything I could, trying so many different medicines, and resources I could find to see if it would help him, and nothing worked. He just kept getting worse. During these 3 years Barrett never slept more than 2 hours at night, so my husband and I experienced an exhaustion that is not even comparable to the newborn stage. Barrett had gone from my sweet, snuggly, and silly little boy who had a ton of energy to an aggressive, aggravated, screaming, insomniac boy. I was grieved. The emotional distressed this caused me is hard to find the right words to describe. Doctor’s would tell me this is just what autism looks like, but I knew that was not the case for my son. I knew something was very wrong.

One thing I was able to figure out and work on was the sensory texture issues with food he had. So, every day I worked with him at every meal and snack to increase the foods he would eat through the 32 step SOS protocol. That was a BEAST that would end up producing fruit in his life years later. But, we spent so much money on food during this time (like as much as a rent payment) and most of it was unintentionally wasted because he would throw it on the floor, in the trash, or throw it up. The progress was so slow, but I knew I had to keep at it.

In the fall and winter of 2019 the stress was weighing so heavy on me I broke out from head to toe in psoriasis for the first time (you can see a picture on my social media account). I did not take the time, nor did I want to spend the resources, on seeing a doctor so I self-treated. It took 3 months for it to go away and boy was I uncomfortably itchy. I hid it well, so only a few family members knew about it.

By the time March 2020 hit and Barrett had to come home from school due to Covid-19 he only wanted to eat ice and chips. Anything else induced a major meltdown that would last days, sometimes weeks, at a time. It is important to note that him attending school was extremely stressful. I had to stay close to his school because without a doubt I had to pick him up early for behavioral issues almost every single day. This caused me major anxiety because I did not want my son going through this and my days were extremely unpredictable.

In May 2020 my brother, who had spinal bifida myelomeningocele, passed away. This is something that deserves its own episode, so I won’t go into details in this episode, accept to say I was living through another nightmare and it was excruciating. The day after my brother’s funeral it was obvious there was something extremely wrong with our son who looked like his body was withering away.

In my utter desperation and grief, the Holy Spirit gave me discernment that morning to call a gastroenterologist that we had briefly worked with a year before. I called and explained what was going on and through the next three months we worked through strict medicinal protocol while waiting for his endoscopy procedure that would give us the insight we needed. Then after the endoscopy we decided to keep Barrett out of school because the healing that needed to happen in his body would take at least a year of full time caregiving to make it happen. His condition was so severe that a g-tube was discussed. It was a very stressful time.

Then at the very beginning of November, two months into Barrett’s healing journey, I get covid. I have asthma and on top of the dire state of stress in my body it almost took me out. I had to fight for my life. I have never been that sick before. I had double pneumonia, pleurisy, and went to the hospital 3 times for low oxygen and possible pulmonary embolism. Around Christmas, about two months after I got covid, I started to feel much better. So, in January 2021 after the holidays were over, my husband was able to return to work at his office.

Two weeks into continuing Barrett’s caregiving regimen and homeschooling my children (due to covid), my body finally collapsed. I was on the floor in my children’s bathroom with heart attack symptoms as my husband rushed home from work. My heart rate was 200 and my chest and arm were in pain, and I went to the emergency room once again.

I was bedridden for the next two months, saw many specialists and doctors, underwent tests, procedures, and tried different medications. At first, specialists were saying that covid was the primary cause of this heart issue. It would not be until the fall of 2021 that a doctor would tell me that “Covid was the final straw that took out your heart, but it was not the primary reason.” 

Caregiver Burnout was the primary reason.

Through all that I have shared so far, I have not even touched on the emotional and mental state of my soul throughout this time. I lost myself. I did not feel like myself. I felt detached from myself in order to just survive. The anxiety I dealt with felt like such a normal companion that I did not know that’s what it actually was or that you could live without feeling that way. 

The medications that I got on last year for my heart, plus the bed rest, and the continued physical recovery made me gain the same amount of weight I did with my pregnancies. And that was hard at first because not only was not able to do the cycling and running I enjoyed that was the only stress reliever I had, now my body did not resemble myself. I had to work through that.

For the first time in my life, I went on medication to treat anxiety. About 3 months into that treatment I felt hope again. It’s hard to explain, but it felt like the sun began to break through the dark, stormy cloud that had followed me for so long. I started to feel like my old self again. This medicine gave me the capacity I needed to make other appointments for myself that would lead me to discover Caregiver Burnout also caused deeper medical issues that I have just begun treating. I also have started to wean off the anxiety medication. 

Here are the things I could control that I did to invest in myself that have helped me throughout the recovery process: 

• Prioritized my health in a new way. Made the appointments. Actually went to the appointments. Took the medications.
• Returning to school – Something I have wanted to do for years.
• Started teaching in any capacity I was given. I am a teacher at heart and exercising this gifting is life-giving, not life-draining, to my soul. 
• Took anxiety medication for a short period to give my soul a deeper level of respite it needed. It had to have a break or I could have lost my life.
• Prioritized a family vacation. The first one we have ever been on.
• And, instead of trying to knock off another thing on my to-do list when I was given any moment of time alone, I laid down. Physically laid down and rested, even if it was only for 45 seconds. I prioritized a Sabbath within my days in small ways versus thinking I could have an entire Sabbath day like a typical family.

Now, most importantly, here are the things God did for me in my desperate condition, that I could not have. This is his power showing up in my weakness. His goodness and grace are everything.

• He turned the covid induced school break of 2020, which should have slowed down my son’s progress, into a season of healing and experiencing more development than he had experienced in four years.
• Brought multiple life-giving friendships into my life last year that I begged God for, for many years. These relationships have given me one of the greatest gifts of all – safe and godly space to share my vulnerable self. 
• Allowed my husband to work from home so that I could have help and more time to physically recover.
• An ABA provider that actually took our insurance AND covers the cost that our insurance does not cover. And a BCBA that is a divine answer to prayer that I could go on and on about – like is coming to my son’s next ARD meeting. ABA has been the biggest gift of respite and help to our family.
• A speech provider that is wonderful, taught my son how to communicate with an AAC device successfully, and is located in the same parking lot as my son’s ABA provider, so they just walk him across to his sessions, taking that off of my plate.
• Brought the perfect part-time job in my life that maybe I’ll discuss in more depth later that is surrounded by wonderful people and most importantly, is life-giving to me.
• Brought this opportunity to podcast with the one and only Sandra Peoples – what a gift Sandra, you, and this space have been to me, friends!
• A new home with everything we prayed for including neighbors that are God-sends.

See, this was not an episode about how to prevent Caregiver Burnout because honestly in my case with the deeper circumstances surrounding my life it was not possible to prevent. And I felt like a prevention episode would bring shame like we have done something wrong when in fact we haven’t. We have done what was necessary for our children and we have reached out to God continually for his help. There is nothing wrong with either of those things. I look back and I do not regret how invested I was in my son’s flourishing because now he is back to his sweet, silly, snuggly self and eating real meals. The fruit from me “sowing in tears” is now here and it is time for me to recover. Also, this episode was not to provide a how-to guide on how to recover from Caregiver Burnout because each person’s plan must be customized for them and God is the ultimate denominator in it all.

My goal was to share my experience so that you don’t feel alone if you have or are currently walking through something similar. Also, I wanted to put language around Caregiver Burnout because it is not talked about enough. It’s not about preventing burnout because the brokenness of this world is going to touch us in some way, but it is about stewarding our suffering with Jesus. It’s about walking through the fire and the deep waters with Jesus, and it’s about walking through the recovery process with Him. Through my journey of Caregiving Burnout, I have experienced more than ever before the promise of 2 Corinthians 12:9: God’s power being made perfect through my utter weakness.

I learned through the experience I shared with you here that God has a trustworthy track record. In the good times, in the hard times, He does not change. We have the opportunity as caregivers to experience the nearness and power of God in a way that other people do not. Did we want to sign ourselves up for this journey? Nope. But, I shocked myself a few months ago when in response to a new acquaintance I said, “Autism is the best thing that has ever happened to me.” I know, after I have shared what I have with you today, you probably think, “what on earth is wrong with her?” Ha! But it is true. Suffering has refined me and made me more like Jesus. Suffering has ushered me closer to the heart of God. Autism has taught me more about the Kingdom of God than anything else. I learned that God truly does sustain. He is trustworthy. 

As we end this episode, friend, I am going to pray a portion of Psalm 107 in the message version over us. May your heart receive these words today.

Psalm 107: 1-9, 43 MSG

“Oh, thank God—he’s so good! His love never runs out. All of you set free by God, tell the world! Tell how he freed you from oppression. Then rounded you up from all over the place, from the four winds, from the seven seas. Some of you wandered for years in the desert, looking but not finding a good place to live, Half-starved and parched with thirst, staggering and stumbling, on the brink of exhaustion. Then, in your desperate condition, you called out to God. He got you out in the nick of time; He put your feet on a wonderful road that took you straight to a good place to live. So thank God for his marvelous love, for his miracle mercy to the children he loves. He poured great drafts of water down parched throats; the starved and hungry got plenty to eat. If you are really wise, you’ll think this over— it’s time you appreciated God’s deep love.”

Amen.

Oh my, friend, this was a more personal, vulnerable episode than I have ever done before, but I felt led to open my heart to you in this way. So, I hope you feel seen, loved, and encouraged today!

Real quick before we go our separate ways, I want to tell you that I am so grateful that you spent this time with me! Next week, both Sandra and I will be back for another genuine conversation together! In the meantime make sure you connect with us through the Abiding Caregiver Facebook group! The link to join is in the show notes.

See you next week, friends!