Caregiver's Guilt

February 13, 2014. The day I became a caregiver.

That was the day Jeff came home following nearly seven months spent in three hospitals after his spinal cord injury. Of course I had been preparing for my role of caregiver for months. The nurses, therapists, and staff did an excellent job of teaching me things like turning Jeff in bed, transferring him from the bed to the wheelchair and back, and how to recognize and alleviate the often life-threatening symptoms of autonomic dysreflexia.

But on February 13, after the EMTs and respiratory therapists left our home, I was left all alone as the sole caregiver. No nurses coming in every hour to check on Jeff. No therapists administering treatment. I was looked to as the person in the house who had the answer to every question regarding Jeff's care. I made the schedule, I managed the medication, I monitored blood pressure and oxygen levels. I was in charge. In charge of a situation I had very little control over.

I was consumed by caregiving.

In a little over a month, we'll have reached the one-year mark of Jeff's homecoming. A day to celebrate, indeed. I am happy that we've gotten this far with our sanity still intact (thought just barely so some days) and have established a routine that works for us. But make no mistake, this life is hard. And some days are harder than others.

I admit, I've been in a funk lately. It's the longest one I've been in since Jeff's return home. And I'm pretty sure the culprit is caregiver's guilt. I've done some research on this topic, and the guilt caregivers often feel when caring for a loved one while still trying to maintain other aspects of their lives is a very real, very common, and often very destructive emotion. I've read some informative articles about the dangers of letting this guilt overwhelm your life, and ways to alleviate it.

And all those articles make so much sense when I'm reading them on my computer. But putting all that advice into practice is ... well honestly, it sometimes seems impossible.

Guilt is an emotion I've had to learn to live with since we started this new life. Some days it's completely manageable. Other days it's unruly. Ugly. Unfair.

I've had to spend a few days lately with that latter type of guilt.

There are some days where my caregiving duties trump all other aspects of my life. Since Jeff is paralyzed from the neck down, he needs almost total assistance with everything. We've gotten into a pretty good routine though, so I often know during which activities and at what times of the day I'll be needed most. But some days, I'm needed constantly. When he's not feeling good and we can't quite figure out why. Or when the routine doesn't go as planned. It's those days, when the spinner of life is landing too often on the caregiving wedge and not enough on other aspects like parenting, nurturing, and self-care, that throws everything off balance. The guilt hits hard, and oftentimes causes an avalanche from there. When I spend too much time caregiving and not enough time as a parent or a wife, I feel guilty.

On the weekends I try to spend as much quality time as I can with Evie. But we don't have an outside caregiver come in on the weekends, so inevitably my caregiver duties creep in. And after hour upon hour of catheters, transfers, feeding, eye-wiping, breathing treatments, and medications, when I finally have a few minutes to myself, my daughter will come up to me and ask if I will play with her, or worse yet, if I have time to play with her. I then feel the guilt swell up and crash over me because, in all honesty, the only thing I want to do is spend those few minutes alone doing absolutely nothing!

Ugh. Guilt wins again.

Then there's my work. I work outside the home because ... well, my salary makes up the bulk of my family's income now that my husband no longer works. I also work so that my family can have health care coverage which has become a very high priority for us in the last 18 months.

But here's the jaw-dropping truth about my work. I LIKE it. Not only do I like my job, the company I work for, and my co-workers, but I've recently discovered that I like leaving my caregiving duties behind for a short time each week day. I like getting in my car, by myself, listening to music while I drive, greeting my co-workers, and talking about other things besides a spinal cord injury!

Of course, all of this makes me feel ...wait for it ... GUILTY.

Not only guilty that I like getting away from it all, but guilty because I can get away. My husband cannot.

And lately I feel like I've been swimming in this sea of guilt. Layers and layers of it. And I'm getting tired. And I can't see the shore.

Right here, right now, I would love to tell you that I've found a way to quell this guilt and that I'm well on my way to conquering it. But that's not even close to the truth. Because, really, I don't think guilt is something you conquer as a caregiver. I think it's something you manage.

Successful management of caregiver's guilt can only come about from being in the thick of it. From experiencing it, recognizing it, and learning what works best for keeping it at a tolerable level.

Just writing about it is helping, I can tell. This blog is a chronicle of our journey. And I hope one day to look back on this post and realize how far I've come in managing this guilt that stalks me.

I'm pretty sure I can.

There's already been so much we've learned to manage thus far.

What's a little bit more?