The dishes are done, now what?

Dirty dishes on the counterBy PAUL HILE

My wife has been feeling good lately—healthy.

I write that with a smile on my face—then quickly knock on wood.

If you read the first article I ever wrote for WeAreCaregivers, you know that there haven’t been many times my wife has felt like this. Mainly, since her diagnosis with a rare autoimmune disorder in 2009, she’s wrestled with fatigue, exhaustion, pain and frustration.

Of course, there have been times when she’s felt better, when she hasn’t been as tired or sore, when her rash hasn’t been as predominant—but those periods haven’t lasted long, and they weren’t like this.

How is she feeling this summer?

She has been doing research in a university city in another part of our state, while I hold down the fort at our home. She’s on her own, taking care of everything. And that has me thinking about the roller-coaster that is caregiving. I am well aware that for some people caregiving isn’t a roller-coaster. There are no “up” periods. There isn’t any chance that the person they care for is going to start feeling better. But for many caregivers—if patients enjoy remission, their roles change and they’re no longer needed as they once were.

Maybe that doesn’t sound like a big deal, but when your identity has become so wrapped up in providing love and care in one way, it can be difficult to accept that you’re no longer needed in that way anymore.

For me, it began with the dishes.

Dishes have just been one of my things. I started doing the dishes when each plate felt like a 10-pound brick in my wife’s hands. Since then, I’ve become one of the fastest, most thorough dishwashers east of the Mississippi. But when my wife started feeling better, she’d kindly do the dishes and for whatever reason it bothered me. It bothered me so much I’d make a point to get to the sink first after a meal.

Why? Because without the dishes—without providing care in this way, and other ways—the dynamic of our relationship changes however slightly.

Don’t misunderstand. I love my wife; I’m thrilled she is feeling well; I share her pride in the work she’s doing, now.

She’s conducting important research this summer with a scientist she profoundly respects. She’s living on her own. She doesn’t need me to do the dishes. And, the dynamic of our relationship has changed. Like a lot of caregivers whose intense routines suddenly evaporate—I’m disoriented. As happy and relieved as I am that she’s feeling better, I still feel awkward when she does something I would normally do; when I talk with her on the phone and she’s just finished cleaning her apartment, prepared dinner, handled some bills and caught up with our friends over the phone.

So here’s my question as a young, inexperienced caregiver: How do you ride this roller-coaster?

I’m looking for your guidance here, so don’t let me down! How do you transition after those intense periods of providing care, from doing everything (or practically everything)? How do you let go of those things? How do you still feel needed?

Please, leave a comment, share this column on Facebook or email me at WeAreCaregivers@gmail.com

I could certainly use the help.

Meanwhile … I think I’ll go wash the dishes.

PAUL HILE is a writer, editor and social-media expert with ReadTheSpirit online magazine. His columns—written from the perspective of millions of younger caregivers—occasionally appear in this WeAreCaregivers section of our magazine. CLICK HERE to read all of Paul Hile’s columns on caregiving.

(Originally published at www.ReadTheSpirit.com, an on line magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

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Comments

  1. Suzy farbman. says:

    Sweet column. Your wife is lucky to have you. So glad she’s feeling better.

  2. Heather Jose says:

    I understand the roller coaster. Not from your perspective so much, as I have been the one to be cared for. It does change things. But you are needed, just not in the same way right now. Your words of praise, your expressions of how well she is doing, your confidence in her… they mean more than you could ever imagine. I would tell you to enjoy a little time of what you likely consider indulgence. Read books without guilt, take time to make things you never have time to make, enjoy extra long workouts. Things cycle, as you know, so just enjoy it for now and take the time to refresh yourself in case your dishwashing services are needed again in the future. In the meantime, go tell your wife how awesome she is.

  3. Benjamin Pratt says:

    Paul, Thank you for these good thoughts and the wonderful news that your wife is having a good summer of relief from her symptoms. I think you have described the shifting identity mirrors that move you along the roller coaster of life as a caregiver. I just visited the Universal Theme Park and learned about how all the rides are designed to create a reality for the rider which gives the feel of being in another world. The rider often feels fifty feet off the floor when in reality it is only 12 inches. Reality keeps shifting and our head and hearts and bodies often feel ahead or behind. I think that is often the case in the lives of caregivers. Our task is to stay present and focused with our ‘heart eye’ on the reality of the one we love. I think you are doing that loving very well.

  4. My husband, Larry, has Parkinson’s Disease. He was diagnosed in Feb. 2007 and we moved to Racine in June 2007. Initially, except for tremors, it was nothing much. He drove a car, walked easily, participated in a great number of activities and eventually got on two Boards of Directors here. We didn’t know what Parkinson’s was and so we purchased a lovely house with an upstairs and a basement, a huge yard and a detatched two car garage. Larry no longer drives and hasn’t for three years. Sometimes he is barely able to walk. He needs a walker. We have installed an expensive stair glide chair and we have occasional help from an equally expensive home care agency. Parkinson’s has not only affected Larry in a number of physical ways, but he has had cognitive loss, and his moods and temper tantrums have gotten even more intense. His children have never come to visit him and rarely contact him. Still he bravely goes on, singing, sketching, still serving on those two boards (I drive him there and pick him up or he arranges for rides) and he goes to church and Bible Study. He has had to drop out of his Parkinson’s Exercise group but I currently take him to Physical Therapy sessions. I am his full time caregiver and sometimes I can barely manage – especially when he yells at me. He is so frustrated and the medication he takes results in severe constipation. I have tried to find ways to make sure that Larry has ample socialization and that I have ways to relieve my own stress.