Self Reflections: Six Years as a Caregiver

Today is the day that looms large on our life calendar every year.

July 27th - the anniversary of Jeff's injury.

I've been tossing ideas around in my brain on what to write this year. I haven't been blogging as much the last 18 months or so, and I think it's mainly because we aren't experiencing as many firsts as we had in the initial years after Jeff's spinal cord injury.

We're kind of chugging along at this point.

I don't mean to insinuate that things are smooth sailing. In our experience that's pretty much never the case with an injury like this - or at least not the case for a long period of time. There's an enormous amount of work required to keep our family train on the tracks.

And as a caregiver, that's kind of my job description.

In looking back over the last six years, I started to reflect on how the experiences - the challenges as well as the triumphs - have shaped, strengthened, and changed me.

I found some old photos recently - some just prior to Jeff's injury - and when I look at them, I feel I hardly recognize myself.

This photo in particular caught my attention. It was taken about six months prior to Jeff's injury. We were visiting his parents in Las Vegas and were in the greenbelt area of their housing community - the same community we would relocate to just a couple years later. Our daughter Evie - a cute little three-year-old back then - snapped the photos of us. It was one of the first she took that wasn't blurry and didn't cut off our heads.

I look at our smiles and all I can think is, "My god, we had no idea what was coming."

If I had been told then that before I turned 40, I would become the sole caregiver to my paralyzed husband - that I would be responsible for all of his care: bathing and dressing, feeding and personal care, assisting with all bodily functions and maintaining all of the artificial means to keep him alive, I would have said I couldn't do it. There's no way I could handle all that.

But I would have been wrong.

Because it turns out that I can handle all that. And more.

In my self-reflections of the last six years, I think the main thing I've learned about myself is what my true limits are. And while I've certainly discovered a number of things I cannot handle - or perhaps a better way to say it is what I will no longer tolerate given the stresses and demands of this new life - I've learned that the limits of what I CAN handle - what I CAN accomplish - are far greater that I had imagined.

Caregiving requires an exceptional amount of self-sacrifice. And I'm not just talking about things like sacrificing a few hours to spend time doing something you HAVE to do instead of something you WANT to do. I'm talking sacrifice on a whole different level. I gave up my career for caregiving - my immediate income, benefits, and 401k contributions came to a screeching halt. My future retirement income has been stunted. My family's economic stability has been tipped on its side in exchange for me morphing into the role of a caregiver. Jeff and I made this heavy decision together because we felt it was the best way for him to get the proper care he needs to live day to day - and the best way to keep our family moving forward.

It's been a necessary sacrifice, and it's worked for us.

Caregiving has been an incredible teacher for me. And not just the kind that's built me up. Yes, it's taught me confidence - I've learned I can speak up to medical professionals and advocate for my husband's needs, and that I know A LOT about what those needs are. Caregiving has also enhanced my level of responsibility - both to my family and to myself. It's taught me to balance the care I provide for my husband and my daughter with the self-care that is so important for caregivers - and to do it responsibly and practically. (As much as I'd love a week long vacation of doing absolutely nothing, that kind of self-care isn't possible in my world, so I've learned to create me-time within the parameters of this life.)

But caregiving has also given me a heck of a beating. It's piled the duties so high that they've smothered me. And truthfully, there have been moments - days even - when I have hated this new life. I've said it to myself between sobs while hiding away in the bathroom. I've muttered it under my breath in frustration while trudging from one task to the next. And I've even said it out loud - to my husband - when the heaviness of our world is crashing down around us: "I hate this life! I. Can't. DoThis!"

But once again, I am wrong.

Because perhaps the most important thing caregiving has taught me is the importance of persistence. I CAN do this. I DO do this. And I'm going to KEEP doing this for as long as it takes.

Even when it's hard.

Even when I hate it.

Even when I think I can't do it anymore.

I can.
...

So we're six years in, and I think we've finally found a comfortable spot in our new life. And right now, we're okay with comfortable. Self-help articles will tell you that getting comfortable in life will stunt your personal growth, but I disagree. It's taken an incredible amount of change - a metamorphosis of sorts - to get us to where we are today.

And right now - today - is a good day.

Because any July 27th that doesn't involve a broken neck is a good July 27th in my book.