Episode 200: My Caregiving Role Reversed: Letting go of Control

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Show Transcript

A couple of months ago I had to face a big caregiving fear… needing someone to care for me!

How many times have we thought or heard another caregiver say… if I need someone to care for me there will be no one. Or… who will care for me if my loved one needs to care for themselves?

I needed to have ACL surgery and my husband and I both knew that I would need a certain level of care at least for the first week or so. As we both prepared for the shift in responsibilities I realized a few things…

He pays attention to the things I do for him. 

To let someone care for you, you have to let go of some control and life expectations.

You give up some autonomy. 

I have to be honest. When we got closer to my surgery date I was really happy to see that there are some things my husband has learned from me as a caregiver. He definitely paid attention to how I get everything and everyone prepared for surgery. He had conversations with me about what I would like to eat and made plans for meals and then researched and found a pre-made meal delivery service that focused on healthy meal options. He was very clear on what he was capable of and he knew that even though he is a great cook he didn’t want to be stressed out about having to decide on what to make each day.

He worked to understand what I thought I would want, and what was important for us to focus on when I got home. He helped me make hibiscus Iced tea and bottle it up so it would be easier for him to just grab it from the refrigerator when I needed something to drink. 

Then a couple of days before surgery, he started to clean up the house. Made sure there was nothing I could trip on when he brought me back home from the hospital. He made sure he knew where he was supposed to park on surgery day. And asked me what I thought I would need when he brought me home that night.  

The night before, he put together his bag, packed himself snacks and sandwiches since he knew we’d be at the hospital for about 10 hours, and had things to do to pass the time. 

It was as if he read my caregiving playbook to get ready for surgery. 

At first, it made me a little sad that I could see his preparation was fueled by some anxiety as prep for all surgery is. But then I realized he was able to do all of these things because he’s seen me do it… multiple times for himself and that made me happy. It showed that he’s been paying attention and he understands a part of what I do as a caregiver. It was very validating for me.

Letting him do it was harder. 

The more he prepared and set up the house for me to come home to heal from surgery the more uncomfortable I became. 

First I felt bad that he was doing all of these things especially since I wasn’t able to help as much as I would have liked. I felt bad that he needed to rearrange his work schedule to be able to be home with me for a week. 

There was a certain amount of guilt that I had to navigate through. Here was the person that I have been focussed on caring for over a decade, setting himself up to take care of me in a caregiving capacity.  I felt guilty that he was stressed about this additional challenge in his life. I felt guilty that I couldn’t just do it all on my own.  

At the same time, I felt comforted to know that I didn’t have to worry about anything but myself. We were able to talk about worries and concerns. My need to have this surgery and for him to care for me reversed our roles for a short period of time and allowed each of us to see things from the other's perspective. 

I learned that I had to let go of control.

When we got to the hospital and they took me back to surgery I had to let go of control. When I got home and was hooked up to an ice machine I had to let go of control. 

I’d find myself irritated anytime I needed to get out of bed because  I had to have my husband help me. The ice machine was great but he had to help me get disconnected from it. It was difficult to walk with crutches to get anywhere and I was exhausted and in pain all the time. So as I fought to try to do things as I normally did I was confronted with not having the ability to do things for myself. And it was frustrating. 

I lost some of my autonomy. I wasn’t making my own decisions for a while. He brought me what he thought I’d want to eat or drink. Sometimes he left me alone in the bedroom because he wanted me to get some rest and didn’t want to disturb me. 

He did all the things he thought he should. That he felt he should. 

I found that what you think should be done or what might make sense isn’t always what the person wants or needs. Most of the time what he did was perfect. But there were some moments when I wanted something and it felt like I waited a long time for him to bring it. Days I didn’t really want what he brought me to eat. Or want him to sit in bed with me even though I did need the bed to myself so I could rest.

I realized these are all things that would piss me off if I were the caregiver hearing it. I didn’t complain about anything he did for me or didn’t do for me. If there was something specific that I wanted when he checked in with me I’d let him know. It became clear that things didn’t have to be done my way to be perfect it would just be different. 

There were some things I wanted to do that he fought me on. Like taking the ace bandage off before I was told to because I wanted to see what the incisions looked like. Walking to the bathroom without his help because I’m stubborn. Or maybe taking off my leg brace more than I should have.

I just wanted to be able to do normal things on my own. 

Sometimes I just felt sorry for myself. Recovery from ACL surgery is a long process and the days I decided to try to plan out when I’d be able to walk normally again or at least not have to wear leggings anymore would come close to breaking me. Realizing each time that I wouldn’t be able to move freely and be released to do things like dance and just be silly without the risk of injuring myself again until the Fall was a lot to take in. In those days I know I was a difficult person to care for. 

 Sometimes I saw in his eyes the frustration that I have felt as a caregiver. That combination of wanting to do what is right for the person you care for but not wanting to push too much and being too tired to really know where that fine line is. I saw it at moments when I didn’t want to take pain medication or couldn’t really sleep but needed to. Or when I erred on doing too much while he pushed me to do much less than I could.

I noticed hurt feelings when maybe I didn’t eat everything he brought me or was crabby with him. Being cared for was difficult. It was a reminder that on top of losing control or being able to make decisions about your day when you need care, you are also dealing with what is happening to you medically. Having to process your emotions, dealing with pain, and at the same time losing some decision-making or your ability to do things on your own.  

What I loved to see while going through all of this is my husband took breaks throughout the day. He’d play a video game, watch a movie or go out to “get something” which meant he was just getting out of the house for a while. 

He was able to take some time for himself and would have been setting himself up with a great self-care practice if he was to be a caregiver long term. 

After a few weeks, things started to go back to normal and as I was able to look back at being the patient there was something that really hit me.  

I am more aware of how losing your power can feel. The frustration that comes from not being able to do regular activities of daily living. The annoyance that comes from not having the choice on things that used to bring you comfort like food or even what you’re wearing. The fear that comes from losing some of your autonomy. 

And I asked myself… do I take that into consideration when I care for my husband?

I’m always so focused on what he needs. Trying to keep him positive when things feel really heavy. Making sure he takes the steps his doctors tell him to. 

Have I taken some of his power away in the times when he needs my caregiving to be more present and do I give it back to him when he is able to do things on his own?

Should I have more conversations with him about what he wants than make sure he gets what he needs?

I could see from the patient's side that sometimes it just seems like things are being done for you and to you and you have at least a little less of a say on what that is. 

It definitely can be comforting on some days. Not needing to figure out meals or basically make any household decisions was great a lot of the time but my need to be cared for wasn’t long-term. If it were I think there would be a point in time when I’d consider giving up trying to be part of those decisions. To just eat what was given to me and just let things happen because quite honestly the more time you spend in bed and the less you are able to make your own decisions the harder it is to find the energy to try to make your way back to doing things on your own. 

So that presents a bigger question. In our caregiving are we giving our loved ones the opportunity to do things for themselves and are we able to do that based on the fact that what they can do might have to look different than in the past? Or do we continue to do everything because even transitioning them back to being more active participants in their own lives would cause everyone involved to have to find the energy to work on it together?

Are we open to setting them up to need us less?

I don’t know what the answer to that is right now for me. 

If you have some insight on this you’d like to share or want to talk it through to figure out what this means for you… I’d love to hear from you. Feel free to DM me on Instagram at loveyourcaregivinglife, simply reply back to one of my newsletters if you get them, or say hello through my website at https://www.loveyourcaregivinglife.com

Thanks for listening.