Episode 212: It's Not Just You Part 3: Behind the Scenes of a Caregiver's Heart

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Show Transcript

If you have ever shared an update about the person you’re caring for you most likely didn’t add anything about your own needs or difficulties.

When my husband was first diagnosed with cancer I was overwhelmed with having to update people and stumbled on CaringBridge (which is an amazing resource if you don’t already use it). However, there were days when I had the strong urge to tell everyone how the experience was for me and I realized maybe I’m not the only one.

This month’s theme is all about things you’d like to say but never felt you could. Expressing your needs as a caregiver is difficult to say the least. Let me tell you, your emotions are valid. I’m here to tell you that you aren’t the only one that feels the way you do. The only reason you think you’re alone is because we don’t have the energy to be vulnerable and share our difficulties, thoughts and emotions.

So this month I’m re sharing reminders that it’s not just you!

Let’s talk about what we’d all love to post on CaringBridge at least once.

I have to say that I really love CaringBridge. It was an extremely important tool for me to use when my husband was first diagnosed with cancer. I found it out of desperation because the more people I told about his diagnosis the more phone calls and text I would get until I realized I couldn’t handle that part of his care anymore. 

If you haven’t used CaringBridge I suggest you look it up and see what they have to offer. Maybe there is something they have that you could use. They have a few more features than when I first started using them that might be helpful. In a nutshell, CaringBridge is a place where you can write updates about the person you are caring for that everyone can read on their own time. More importantly you only have to write it once.  

As the person responsible for getting out the information, it’s perfect. However, there is a part of me that wants to write a completely different post when I’ve had a hard day. When the story is, he had a good visit with the doctor. 

However, the back story is: He fought with me over how to get to the doctors office because he likes to drive but can’t drive and I didn’t get a chance to eat lunch before leaving so I was starving and wanted to cry because I’m just so tired but I didn’t and it created this ball in my throat that I just wanted to release but I just swallowed my emotions and got him to the office on time!

They all come to read the posts because they want to know about how the sick person, the injured or disabled person is doing. They don’t realize that all of the things that happen for that person is because YOU the caregiver are the one supporting them. Stories about your exhaustion or how you can’t stand stripping drains is not entertaining, because it is a form of entertainment isn’t it? A voyeuristic interest that is just the human experience. We live in a world of instantaneous information so to have to wait for CaringBridge updates is difficult for some people… I know. 

And if you, the caregiver, are writing the post you don’t even feel like you can complain about how shitty things are because you worry about what people will think. In fact, just recording this episode, even though it is meant for caregivers, makes me a little nervous because I worry I’ll hurt someone’s feelings. 

Whatever… 

Here’s my imaginary CaringBridge post - Caregiver style

Today I woke up and realized nothing had changed over night. My husband still has fucking cancer and there is nothing I can do about it.

There’s nothing you can do about it either but I know you’ll tell me that you wish there were and that you are praying for us. I appreciate you wanting to do something but life sucks at the moment and I don’t think anything will change that unless somehow you can make my husband heal faster. Like now. Like RIGHT now!  

I can’t remember how many weeks it has been since his surgery but it feels like it’s been for forever. I’m trying to hold things down but I am pretty sure I rewashed the same load of clothes three times and I might have used a glass from the dishwasher before it was run. Somehow I think those two things cancel each other out. 

I decided to take a shower today. My family thanked me for that one. Seems like you can’t cover the sent of exhaustion with incense but I tried it anyway. 

This morning I went outside and took a picture of the tree in my front yard because it had started loosing its leaves and I hadn’t even realized the leaves had changed. But I’m pretty sure I’ve seen that tree in the past month so I took a picture for when it loses all it’s leaves and I wonder if I ever noticed when they changed colors. My brain is running on need to know and remember and I don’t think this will fall into either of those categories.

I am really fucking tired of cooking! Not only cooking but just figuring out what we are going to eat for dinner. So ordering out isn’t any easier because that requires me to think and then coordinate the tastes of everyone in the house. Usually this decision comes when I’m already starving so hangry decisions are made and I try to remind myself that planning might be something to consider in the future.

Right now the present is what I am trying to handle and sometimes it feels like I’m trying to contain a gallon of slime in one hand and a hot pan in the other. What do I hold on to and what do I need to let go of in a hot second? 

I’m not even sure what the point of this update was supposed to be about and almost sure you are still reading because - lets face it - when someone is making you feel better about yourself because their life is a train wreck you’ll stay for the ride.

Oh…. You want to know how my husband is doing? I get it. CaringBridge isn’t necessarily for the caregiver now, is it. Or at least that is why you all are here. You want to know more about the cancer patient don’t you?

Well he is taking a nap. All cozy in bed and resting so he can heal. He was able to get up and out of bed this morning and get himself showered and dressed on his own.

Did I already mention that I was able to take a shower? It really felt good to have a few moments to myself. I really should get soap that smells better.

Oh - yes… he was able to get up and move around today. I took him to the doctor and she said that he should start moving around more but that as he heals he will still have trouble breathing. So make sure not to take long straight walks or hikes so as not to get half way out and have to be transported back. Do them in small circles. Also, hot tubs and pools will make it harder for him to breathe. 

So… I’m not sure what alternative universe this surgeon thinks we live in. Did I mention I just noticed my tree? 

Ok back to him - the surgeon told him to take his time to recover from surgery. Do just what he can and make sure to rest. 

You know that load of clothes I washed three times? It’s been sitting in my room for three weeks. I just haven’t had a chance to get to it and I figure I’ve pulled out almost all the clean underwear so maybe I just wait until all the clothes are dirty again and just take them down to the wash. Why bother putting them away?  I say I have better things to do like refill water bottles and deliver breakfast in bed. 

I know some of you have called, emailed or texted. If you haven’t heard from me yet you probably won’t. There are only so many people I can retell this story to and to be quite frank you get all the news right here on this site. I won’t have much more to add if we speak. I get you want me to know how much you care and I love that you are there. Having a support system is important to us. 

However, as you can see from this post, shit has become real and I am running around this house apparently like a mad woman. 

So when things die down a little I promise I’ll get back to you.

Thanks for all your prayers and well wishes

I’ll update again when there’s more news.

What would your CaringBridge post be if you could write anything? It really felt good to write this one. Send me yours I’d love to read it!