Episode 243 : Getting your head out of your own caregiving A$$

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I remember the day clearly. There was a yoga class being given at a beautiful art museum and I really wanted to go. My husband’s cancer was still very active at this time but I had realized I needed to care for myself more and this yoga class, this one yoga class was important to me because I knew it would be hard to get there. The planning actually made me feel like crap. I felt sick to my stomach when I signed up for it. I cried on the drive to it. I was excited and felt guilty at the same time. 

Let’s talk about caregiver guilt

This yoga class was being held at the Milwaukee Art Museum. You should google what it looks like if you haven’t seen it before. It’s a beautiful white structure that looks like a fin and it’s main hall juts out towards lake Michigan. Designed by the architect Calatrava it has a wing that moves to adjust to the weather and the hall the class would be held in has a glass roof. I had been to the museum before but this yoga class had been on my bucket list for a while and was offered only a few times a year.

So when I found out about this class I wanted to finally get to go and the idea of doing something just for myself was one of the hardest things I did that year and that’s saying a lot because that was the year I learned how to strip drains, clean wounds, and become an aggressive advocate for my husband. 

When I put a yoga class up to all those things it sounds trivial considering everything I had to learn to do. but do you ever place the things you find difficult to do for yourself up against all that you’ve done as a caregiver?

I’m sure you have an idea of how I was feeling. At first when I found out about the class being scheduled I was excited. Then I came back down to earth and remembered I was now a caregiver. So I felt sad. Like a kid being told they can’t have another cookie sad. The sadness took it’s time to lead me through a slow spiral of resentment. I couldn’t help thinking about how before caregiving I could have signed up for that class and gone to it without any complicated emotions involved. I was envious of all the other people who could just get up and go to this class without a care in the world. Then the anger set it. But the kind of anger that shows up when you can’t have something. The anger you felt in High School when you realized your ex boyfriend has a new girlfriend. An anger that comes out of something being taken away from you. Not wanting to come to terms with the fact you can’t have something. 

Then came the sadness again but with a - the world is against me- vibe. I can’t have anything tone. Then I’m sure my husband coughed or maybe it was early in the morning and he moved in bed and that’s when what we all call caregiver guilt jumped in and wrapped itself around me like saran wrap. And I wore it all the way to that yoga class.

Because I knew this was about more than a yoga class.

Have you ever found yourself ready to make a change in how you live your life as a caregiver? Have you ever found yourself in a place where you know you have to make a change and you are ready to make it but acting on it is the most difficult part of it all? Or maybe just thinking about wanting more is as far as you get. All because at some point you find yourself, like me, wearing a suit of guilt. 

You start to imagine what other people will say if they find out what you want to do or plan on doing. Who will see you at the coffee shop with a friend and maybe even catch you laughing and having a good time? Who will roll up next to you at a red light and notice you singing in your car at the top of your lungs? Who will catch you enjoying your life? As if it were something you should hide.

Maybe that isn’t what stops you. For some of us it’s our own judgement of ourselves when we catch those fleeting thoughts of doing something that can bring us joy. Maybe it happens when the sun finally comes out after it’s been hiding for what seems like years and you feel a strong urge to get out of the house. Instead of just stepping out your door you remember you aren’t the one that’s sick and you say to yourself that you don’t deserve to have that moment. Who are you to think you deserve to enjoy any part of life when you aren’t the one who is suffering? 

I’ll be honest, I felt all of that. For the entire week between buying my ticket for that class to the day that I went, I felt sick to my stomach and every hour I had to stop myself from cancelling my plans. The morning of, I worried what someone would think if there were people there that knew me. I battled the guilt I felt when I hugged my husband and made sure he had everything he needed for the time I would be gone. 

It was a lot of work to get to the day. And I was emotionally tired. And even when I got into my car all of me wanted to just go back in the house put on my pajamas and sit on the sofa with my family and watch SpongeBob. 

Instead, what I did is I packed up all my emotions, rolled them up into my yoga mat and took them along with me. 

Guilt was still tightly wrapped around me and in the quiet of the car it made it hard for me to breathe. So I decided to try to distract and turned on my singing playlist and sang as loud as I could. It felt like the longest 45 min drive of my life. 

I got to the museum, parked and actually considered going to the donut shop nearby, picking up a dozen and going right back home. As if I need an offering to repair what I had done to them. Leaving them alone to fend for themselves. 

That’s one of our worries isn’t it? How many times have you asked yourself, If I leave what will happen? If something happens and I’m not there I will never forgive myself. And I completely understand how this can be a very real fear if your loved one has dementia or Alzheimer’s or is a child that can’t be left alone. Those are very real needs that need to be addressed and someone needs to be scheduled to take your place while you are gone. Yet an additional roadblock to finding time for yourself.

Sometimes when trying to do something just for yourself the act of leaving is the hardest. The amount of headspace needed to pull it off makes that 30 min coffee date with a friend, or a 15 min walk down the block feel like it isn’t worth it. Then the guilt sets in and we give up. You feel guilty that you’d put your household through all this upheaval for you to just leave for a little while. Guilty that you’d even consider doing something for yourself when your loved one is in pain. Guilty that you’d ever believe you deserve more. 

And let’s be real, if feeling stuck is what you’re used to it’s comfortable. If you are unhappy with your life at least you know what to expect. If your needs aren’t being met then at least you know what you’ll wake up to every morning. because wanting more and attempting to do something that would be good for you to do require you to be vulnerable, uncomfortable and actually put yourself first. 

And the feeling that very sentence just gave you is why many caregivers don’t care for themselves. Prioritizing your own needs is complicated and in the end the caregiver guilt is the deal breaker. 

I fought through that while walking into that art museum. I checked myself in, unrolled my mat and sat in all the emotions I brought with me. I closed my eyes - which in all honesty is the same as putting on your headphones as soon as you sit down in a plane - a universal don’t talk to me in the yoga world. I thought if I didn’t make any eye contact I could delay any emotional reactions I knew I would undoubtedly have while I was there. LIke a toddler playing hide and seek but standing in the middle of the room with their hands over their eyes. If I couldn’t see anyone they couldn’t see me either. 

I had one last moment of wanting to flee. I strategized if I could actually roll my mat up and go or if I would just have to leave my mat there, a casualty of this caregiving war I was fighting. Knowing I was now surrounded by at least a hundred other mats I stayed and when I heard the guitarist start to play… I cried. 

I thought… how could I possibly have allowed myself to be in this beautiful moment? I don’t deserve to feel good. How could I have left my husband home alone on a beautiful Sunday morning? 

We all stood up on our mats and just like needing to go to the bathroom during a church service I thought this is my only chance to leave… but I stayed. 

I moved, and I breathed, and I cried. I bent and I breathed and I cried. I sat and I wept. I kneeled and I whimpered and halfway through the class I was all tapped out. I realized I had a choice to make. Make this worth it or waste the opportunity. 

I mean, have you ever found yourself in the middle of dinner with a friend you haven’t seen in a year and finally realize that you are bringing down the mood and just want to flip a switch and enjoy your time? It’s hard to do. People who haven’t experienced caregiving can’t understand the amount of emotional and physical energy it takes to get out of the house sometimes. Or to allow ourselves to do something fun. It’s like the difference between getting out of the house without a child versus trying to do it with a toddler. It takes more planning, more energy, more tears. 

In the middle of that class I realized if I did put my family through any hardship it would have been wasteful to not fully enjoy the yoga class. So I stepped out of my feelings and as I moved on my mat I slowly started to brush them away. By the time I got to the end and laid myself down, I was covering myself with a blanket and not with the guilt I wore into that room. 

I still cried but this time it was a release. In those tears I let go of stress, I released overwhelm, I got rid of fear and worry I didn’t need to hold onto anymore. And when I finished, rolled up my mat and walked away, I felt lighter. The emotions I had brought with me had disappeared and I walked out of that beautiful museum with a smile. 

On the way back I sat in a quiet car. No longer needing music to distract myself from my feelings. I sat in the calm I brought out of that class and enjoyed the sun and all the scenery I didn’t realize I drove through earlier that morning. 

I parked in my garage and took a few seconds to breath. Worry began to peek in. Wondering what happened while I was gone. Worried of how they would react to me leaving them. Putting some armor back on in case this became a failed attempt at doing something for myself. 

As I walked into my house it was quiet. The TV was on in the living room and as I turned the corner I saw my husband and daughter snuggled up to each other watching TV. They were exactly where I had left them. And they casually looked up and simply said “hey, how was it?” 

I answered “it was great, how did it go for the two of you” And without looking away from the TV they both shrugged their shoulders and said “fine”

That’s when I realized this was a non-event for them and all the problems I had were in me. 

They didn’t need me ALL the time which, if I’m being honest, stung a little.

Many of us identify with being a caregiver so strongly that the thought of not being needed is unsettling. Becoming a caregiver is usually such a shock to who we believe we are that we completely shift to just our caregiver identity. When that happens we assume we are always needed because without being needed as a caregiver who are we? I had built this need up in my head so much that I couldn’t see past it to realize my husband was ok without me for a while. A yoga class won’t break him. A walk or a coffee with a friend won’t break him. He can handle doing things for himself. I was making my caregiving role the utmost important thing in my life and couldn’t process the fact that I wasn’t needed as much as I thought I was. 

The fear of being judged, the guilt I felt came from me. No one told me that I was selfish for going to that class. 

What hurt was the realization that I was the one holding myself back. I had caused myself all that turmoil the week before. I’m the one that stressed myself out. It was never my husband or my daughter, or my family and friends. It was me. It was me having my head so far up my caregiving ass that I couldn’t see that as important as I was to my husband it didn’t need to keep me away from doing things for myself. 

It was not knowing who I was anymore.  Somehow forgetting to prioritize my own needs was what got me there. Thankfully I realized that I didn’t need to stay there.

As I looked back to that day over the following week and saw how much drama I created inside my head about that one class I was surprised at how hard I could make it for myself to care for myself. It also showed me how bravery is intrinsically intertwined in everything we do as caregivers and how important it is to use that when doing things for ourselves. We have to be brave to be able to advocate for ourselves, make our needs a priority and create the boundaries to make them happen regularly. We have to be brave to show our vulnerability and ask for what we need. I had to be brave to fight all the emotions, worries, doubts, and caregiver guilt just to get to a yoga class. 

We know how to be brave for our loved ones. We see the results of it when we ask for that additional test the Dr doesn’t think is important, consistently call every morning to see if there is a cancellation for that MRI they need, and demand better care in a hospital. 

You are brave and strong for the person you care for. Be that brave and strong person for yourself. Ask yourself who told you that you should feel guilty for wanting to feel joy in your life? 

Because you deserve to enjoy your life in spite of caregiving. 

Thanks for listening.