Thoughts of a caregiver

My wife has been disabled since 2014. The trajectory of her disability has been unpredictable, with no clear beginning or end. The exact nature of what’s wrong is unclear. The exact treatment that might help is unclear. Whether there IS a treatment that might help is unclear.

All that is beside the point of this blog because it’s about me, not about her. And that’s the crux of the Caregiver role with a capital C – it’s never really about us. It’s about disability and our role in facilitating someone else’s life. Such was my life for four years, during which time I gradually sank into a depression, so slowly and subtly I was unaware of the process. My depression might be titled, “Is this all there is?”

I had days off. I had time here and there when I went to visit relatives in other states. And, I was never off duty because I was always in range of text messages, phone calls, and email.

And then I went to China for ten days. My wife told me, “Don’t get a VPN that will give you full internet access while you’re there. This is YOUR time.” I had no access to Facebook. Little access to Words with Friends. And no email – which I didn’t count on. Both Facebook and Google are verboten in China – something about not agreeing to Chinese restrictions on security. Gmail is Google. So, no email for me while I was gone.

Ten days NOT a Caregiver. Ten days off duty. Ten jampacked days, jammed with tourism and concerts and rehearsals – MY tourism, MY concerts, MY rehearsals. For ten days it was all about ME and nothing about my wife. I came back from that trip rejuvenated, re-energized, revitalized. I have new purpose in life. I’m no longer depressed.

Strange and ironic – the self-focus of those ten days has allowed me to focus on my wife again. Our marriage is all the stronger because I am now more self-aware than I was, more focused on my own projects and goals. I am now a caregiver as opposed to a Caregiver. Switching from my front-and-center only role, I am now lower-case caregiver, allowing me to be upper-case Partner-in-Life once again.

These thoughts occurred to me last night. This morning as we were driving to church, my wife said to me, “I’ve been so happy with how you’ve been since you got back from China. You’re focusing on your own things and you’re doing so good.” We’re on the same wavelength. Her own life is a bit harder now because in switching to lower-case caregiver, I’m not focusing as much undivided attention on her, necessitating her doing more things for herself. I’m lucky; far from resentfully resisting this shift, she is embracing it, despite her fears about her own capacity. In the long run, this too will be a good thing, not only giving me my individual life back, but hers as well.

To the Caregivers among you: what would it take for you to become a lower-case caregiver? Highly recommended.

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