Episode 141: Negative Caregiving Experiences are What Define and Mold Us Into Who We Are

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Show Transcript

We try so hard to remember the good times we have with the people we love and care for and push away all the negative experiences we have. When you think of it though, aren’t the “bad” times and experiences in your life what make you who you are?

Let’s talk bout not running away from the bad things that happen to us.

When I think back on the past decade of my being a caregiver I can’t honestly say the good times are what made me the caregiver I am now. 

The good times are always the breaks in life. My husband not having to have surgery for at least six months was a break from the higher level of caregiving I’d give if he did have to have one. Laughing at something on tv together in the hospital while he recovers was a break from his pain and suffering and my anxiety and stress. 

Taking a vacation after feeling stuck in our home for almost three years because we needed to keep my husband safe from getting sick was a blip in the whole experience.

The good moments are gifts for us when we are mindful enough to notice them or work hard enough to create them. They’re the moments we get to breathe calmly for a moment. They allow us to see the good in life and fill us with joy, happiness, and gratitude so we can continue to care for our loved ones. 

If these moments are long enough they give us the opportunity to take a seat and think about what we would like to change in our lives, allowing us to dream and connect with our loved ones on a different level than we usually do. Once everyone gets back from a vacation or an extended fun outing we are all hit with the realities we live in. Don’t we?

The happy moments are, many times, unexpected gifts and much-needed breaks from the norm.

We all know these moments aren’t what make up our days, especially as caregivers. 

When you think about your caregiving do you know you can make it through difficult things because of the vacation you took three years ago or because you were able to advocate for your loved one last month? Do you know you can stay firm to the boundaries you set because you actually were able to enjoy the last holiday or because you all went out for ice cream last week? 

The difficult moments are what make us who we are and as caregivers, we, unfortunately, come across a multitude of opportunities to grow this way. 

The moments you can’t stand to remember, the ones that changed your life, and the small constant hits are what helped mold you into the person you are now. 

Hearing from my husband that he has cancer changed my life. Seeing the fear in his eyes going into his first surgery and watching him fight to recover changed me. Having to face my fear of losing him, stripping his drains, and advocating for him sometimes relentlessly until he got the care he deserved all had their part in making me not only the caregiver I am now but the person I am today. 

I’ve had a lot of happy moments throughout my years of caregiving but I can honestly say those were what helped me release after the troubled times and fueled me to be able to continue to move forward into life. Getting through difficult times of my life with my husband has strengthened our relationship. 

So why do we only document the good and try to quickly forget the things that change us? 

Why is my camera roll full of Chicago sunsets and smiling faces? 

We instinctually document all the good that happens to us. We hold on to those memories and tell the stories because they are precious. They are surprising moments of happiness that we want to remember. 

The problem is, for many of us, these moments are hard to find. 

The first six months of being a caregiver are forever lost for me because I have nothing to reference except what is now sometimes blurry memories of my life back then. I have no pictures or journal entries to remind me of what has to be the most courageous I’ve been in my entire life. 

No selfies to catch the fear in my eyes. Nothing documenting all the appointments I went to with my husband before his first surgery. Nothing to remind me how scary it was to know someone was sticking a large needle into his neck to biopsy a small lymph node. 

I only have pictures of the happy moments and for all of the first year, there weren’t that many it seems. 

I have nothing to look at that can remind me of a defining year of our lives. 

I didn’t document my almost passing out when I watched them pull 3 arm spans of drain tubing from my husband's neck. 

No video of me stripping his drains at home for the first time without a nurse's help. 

Nothing to capture the moment I thought I was so smart to think of using tiny hair claw clips to keep his drain tubing from getting caught when he moved. 

Pictures are like story prompts for our memories. There are so many things I know I would be able to remember easier if I had taken pictures of that year the same as I do the years that seem to have been easier to live through. So many things I know I have forgotten forever because they are overshadowed by the extremely difficult ones. 

Let me ask you… what do you have on your camera roll right now? 

I know we don’t take pictures of the moments that are trying, sad, scary and difficult because we don’t want to be reminded of them. However, if that means we are forgetting whole years shouldn’t we reconsider? 

I mean I know we should all have boundaries and be intentional when we do document our lives good and bad. 

For example… I never take pictures of my husband in the hospital, especially after surgery, unless he asks me too. I’ll take selfies of us together before but never after. I don’t take pictures of him when he’s having procedures done and once I walk into the offices of any doctor my phone never leaves my bag. I won’t take pictures of people I don’t know in any medical setting either. I will take pictures of myself. During my husband’s last surgery I had to have a visitors take stuck to my shirt that had the day of the week printed on it and I found that was a fun way to document our time there.  I do have a lot of pictures of hospital bed legs, hospital floors, and a whole collection of hospital chairs. Because when I look at these pictures I can remember that moment and how it felt and that brings back all the other memories about why we were there in the first place. 

Yet, I don’t have a lot of pictures of me sleeping the opposite way on our bed so he could have more room to sleep when I brought him home. Or of his sternotomy before it was healed which is a shame because getting through that recovery was an accomplishment. 

I won’t think of taking a picture of me wearing the same pajamas for 96 hours but I’ll rush to catch a sunset that I’ve now photographed for 4 months straight. 

We want to catch the beautiful happy moments in our lives but that isn’t what makes us who we are. 

When I look at vacation pictures or pictures of my family having fun together it makes me happy. I love looking at these pictures and remembering the day, how it felt, and what we did. 

I think we all do that. Or maybe sometimes we look at these pictures and feel sad because we haven’t had a day like that in a long while. Or maybe it was the last happy day you remember having with them before their health took a turn and everything changed. 

When we don’t document the difficult times we lose the ability to look at pictures and remember how we got through them. We don’t have something to look at to remember how strong we became or had to be to get through it.  We deprive ourselves of the ability to remember how much we’ve grown and how strong we’ve become. 

If your loved one is in a steady decline you might not feel that any moment will be a good one because each second brings you closer to losing them. As hard as it might be to do… wouldn’t you want something to remind you of your last year with them? 

Our time together on this earth is never guaranteed. I’ve had several reminders of that recently. I personally would like to have memories to look back on, good or bad. Because looking at a picture is like turning on a light inside you. It holds so much more than colors and shapes. Pictures unlock memories and emotions that sometimes we aren’t able to access without the reminder they give us. 

Yes, it takes more effort to take pictures when things don’t feel perfect and fun. But those are the moments that define who we are and having a reminder of how we got through them helps us know we can get through most hard things. 

Consider taking pictures of the hard times as much as the good. 

You’ll appreciate having them in the future.

Thanks for listening.