After Caregiving, the Laundry

I wrote this article for CARE Connections, a publication of Boulder County Aging Services, which gives Information and Inspiration for Caregivers. It appeared in the March/April 2011 issue.

For four years, I’ve been caregiver to my husband, Romeo, who suffers from dementia. And I’ve recently realized that my job as caregiver is temporary. One day my caregiving responsibilities will be over. One day Romeo will no longer need a caregiver. And this means that one day I’ll return to a “normal” life.

I have contemplated this new life sans caregiving. What will it be like? Will I spend my days falling into a black hole, right behind my husband? Or will my life be fuller, richer, than it ever was before, more than I ever imagined it could ever be?

Essentially, of course, the only difference between my current caregiving life and my future life without caregiving is that after caregiving, the only person I’ll need to take care of is me. And I’m used to that, right? After all, I’ve done a pretty good job of taking care of me while taking care of Romeo. Or so I am told. But is that really the only difference? Just because someone else takes over the caregiving role, or just because there is no physical body, no emotional body for me to take care of, does that mean anything? Will my caregiving mode suddenly switch off? Or will it be more of a gradual fading out?

When you’re a caregiver, your life is centered on caregiving, and only that. Caregiving becomes everything. You eat, drink, sleep, and breathe caregiving. Your every thought is about the person you’re taking care of, your loved one. Your eyes are on alert, always looking – is your loved one is safe, asleep, does he need something, is he somewhere he shouldn’t be?

When my caregiving days are over, what will I eat, drink, sleep, and breathe if it’s not taking care of my husband? What will I think of when I don’t have to think about my husband? What will my eyes see when I don’t have to watch for the obstacles that can hurt my husband, when I don’t have to see that he is awake or asleep, when I don’t need to know whether he needs something, when it isn’t relevant for me to see his whereabouts because he’s no longer here for me to watch?

Indeed, caregiving consumes one. It becomes your identity. Sometimes it feels that I am thought of as “that poor woman whose husband has dementia.” They recognize the self-imposed tunnel vision I’ve activated in order to take care of Romeo. I’ve given my life to taking care of Romeo.

Throughout each day while taking care of my husband, I become an extension of him. Because I know him so well, and because I care deeply about his happiness and comfort, I anticipate his words, thoughts, feelings, and desires. I play the game of “if I were in Romeo’s shoes, what would I want right now?” Perhaps this habit of mine, a way of being, really, is over the top. Some have told me I indulge my husband. And why not? There is so little he can control, so little he can do. You bet I’m going to do everything in my power to get him what he wants.

What will I do when my days of indulging him are through? Where will my enjoyment be directed then? At this point, there are more questions than answers.

As my husband’s caregiver, I live in his shadow. It seems that the attention of strangers, as well as friends and acquaintances, goes to Romeo first and then to me second, if at all. Their comments and inquiries are directed toward and about my husband. “How is Romeo doing?” they ask, anticipating an answer that’s as debilitating as his disease. Of course, I don’t mind their inquiries. On the contrary, I welcome them. Life right now is about Romeo. Completely. Every day that someone asks about Romeo, I make sure to mention it to him. Much of the time, he has no idea who the person is. He’ll ask, and I’ll tell him where he knows that person from. He’ll nod his head and smile. He enjoys being asked after. He is happy, at least for a short while, and any amount of happiness I can give him helps him tremendously.

What will people ask me when I no longer take care of Romeo? And, of more concern, what will I answer? What will life be like when my caregiving days are over?

The first answer that pops into my mind is that – wow – I’ll be able to go back to my old life. I’ll be able to go back to work. I can also get back to working on my art, my writing, and I can spend more time on my other passions, more time with family and friends. I’ll have the flexibility to go where I want and do what I want...just like before Romeo was diagnosed with dementia.

In short – and this may be no surprise to you – I realize that my life after caregiving will be no different from my life before caregiving. The only thing that will change, really, is my point of view. In “before caregiving,” I focused on me. In “during caregiving,” I focus on Romeo. In “after caregiving,” once again I can focus on me.

Ahhh, and here’s the nugget: my life as a caregiver (thus far) has changed me. It’s made me more understanding, more sensitive, sharper. It’s been a sort of painful yet blissful time that came with deep insights and that revealed my inner depths and affected my outer reality. It moved me beyond my usual perception of myself. Just like in the old Zen proverb, “After enlightenment, the laundry,” my future life will be “After caregiving, the laundry.” One reality does not shatter the other. One reality does not start when the other stops. While caregiving has changed me forever, I still need to do the laundry.