I Don’t Know What to do with My Hands: Tales of a Former Caregiver

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We’ve all heard that saying right? Usually in context of a funny GIF or meme or something along those lines, and they are hilarious. That phrase, however, took on a different meaning for me in the last couple years.

When my mom was diagnosed with pancreatic cancer in February 2015, I broke the lease on my house, moved back home, and took a 6 week leave of absence from work to be there for her in the initial months of countless appointments, surgeries, procedures, treatments, etc. (And then I found out I was 7 months pregnant but that’s a story for another day.)

I spent the majority of my time during my mom’s almost 4 year journey with PC doing 3 things: being a mom, working and taking care of my mom. So if I wasn’t at work, my son and I were at my parents’ house. My free time was spent at doctor appointments, lab checks, chemo, surgeries, procedures, pharmacies, etc. I could recite from memory every detail of her case because I never missed a single step. I slept in a hospital chair for 3 weeks straight, I changed feeding tubes, replaced bandages, cleaned up sickness, and everything else that comes with the glories of being a terminally ill patient’s caretaker.

And I would NEVER change that. Ever.

I don’t regret spending a single moment of my spare time doing those things because I was spending that quality WITH my mom and they are some of my most favorite memories.

However, when my mom passed and the dust began to settle from everything that has to be taken care of immediately after, I could feel myself sinking into being a recluse. Succumbing to the pain and the absence of her not being physically here.

I had all this time on my hands, and I absolutely didn’t know what to do with it. I know that sounds crazy, right? A single, working mom to a rambunctious little boy saying she had all this time she didn’t know how to spend? When in most cases people can spill out a laundry list of activities or things they need “time” for during the day. But it was true. I had gone from every single moment of every day being accounted for and knowing exactly where I needed to be after work, or on my lunch hour, or the weekends, to nothing.

And the silence of that was deafening.

They say it is harder on the caretakers than the patients. And I believe that to be true in so many ways. Until the day came where I was no longer the caretaker.

The question for me became, what do I do with my hands? What do I do with all this time that is no longer filled with doctor appointments, picking up prescriptions, hospital stays, chemo, etc.? Where do I go from here? What does the caretaker do when they are no longer the caretaker?

Most people like to place the standard “now you have time to do more for you” opinion on people who are no longer caring for a loved one. Truth? Not a single one of us wants to hear that. I can guarantee you that if you talked to 100,000 caretakers, 100,000 of them would say they would do it all again and wish they still were. Why? Because their person would still be here. It’s a catch 22: you’re given this huge chunk of time back that you haven’t had in years BUT there is this even bigger void in the shape of the person who is no longer here.

So what is the answer? What DO you do with your hands when they’re no longer filled with caring for someone else.

You have to sit in it and wade through it. You find new ways to fill your hands, your time, your emotions. You take what you experienced and the memories you hold so dear from those precious moments of caring for someone you love and you use them to grow through the next phase of life.

Your story isn’t over when the care-taking ends, it’s just a new chapter.

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