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.

The Backup

A couple months ago, I took these pictures of Evie providing care for Jeff when she participated in “take your child to work day” for school. She stayed home from class that day, and together we took care of Dad. We made and fed him breakfast. We did breathing treatments, and trach care, and changed the circuits on his ventilator. She even watched me change the dreaded colostomy bag – because the stark reality of caregiving is often having to do a lot of yucky things.

Evie has taken part in Jeff’s care since the beginning – that’s just kind of how it is when you have a family member that requires 24/7 assistance. As she’s gotten older, she’s been able to understand and handle more complicated tasks. And aside from a couple more intimate tasks like changing a catheter or cleaning certain areas of the body, she’s helped or at least watched me do almost everything there is to take care of her dad.

We’ve never hidden what is involved in taking care of Jeff from her – and that’s partly because she’s the closest thing to a backup caregiver that we’ve got.

As a solo caregiver to someone who needs full assistance, one of my biggest caregiving fears – besides something bad happening to Jeff – is something happening to me where I’m not able to care for him.

I haven’t been feeling the best lately. And it’s gotten to the point where I need to seek medical advice. From my symptoms and the research we’ve done, we think there might be something amiss with my gallbladder, but without medical tests we can’t know for sure. Jeff and I have been trying to approach this with a level head – which can be tough sometimes when we get caught up in “what if” scenarios. We’re hopeful that the pain can be alleviated with minimal time away for me. But we have to be prepared for me to be away for more than a few hours should I end up needing surgery.

And thus why the concept of a backup caregiver has been on my mind lately.

But here’s the hard truth about that: In family caregiving situations like ours, there are no understudies. No one waiting in the wings who is shadowing me. No one fully trained to provide the detailed, complex care I perform every day. So the thought of me being out of commission is terrifying.

Yes, we have our amazing 10-year-old daughter who has stepped up to the plate and has proverbially hit it out of the park with her competence in the tasks she’s learned and performed. But full-time caregiving brings with it a weight of responsibility that is not fair for a young child to shoulder.

We’ve reached out to Jeff’s parents for additional help above and beyond what they already provide for us. I’ve trained them in some more in-depth tasks that will help keep Jeff healthy and thriving should they need to step in for me.

I really hope it won’t come to that. Honestly, we’re all hoping it won’t come to that. But being prepared is just another aspect of what being an effective caregiver is all about.

So I will say with honesty that the day Evie stayed home to help take care of Jeff, I had more on my agenda than just “showing” her what I do all day. I made her do tasks herself, even when she was hesitant or a little nervous. Because that’s how I was taught. And the only way we master is by getting in there and doing it.

Ask any caregiver for a wish to be granted, and I can guarantee the majority of them would wish for the same thing: a clone. But since reality hasn’t caught up with science fiction yet, the next best thing is our back up.

And right now, Evie’s okay with being the backup. In fact, she takes pride in it. There’s not a lot of other kids her age who have the knowledge and skill she does when it comes to taking care of another human being.

She’s got a big role to play in our family. We depend on her – sometimes heavily – to handle some pretty complex tasks. And she does an incredible job.

She’s one amazing backup.