By Penny Pearlman

I spent months lying on the sofa in our family room, gazing out at the trees, dozing in the afternoon sunlight, gathering my strength. In the 54^th year of a rich, full life, I was run over by a locomotive. Oh, not literally of course, but everything turned upside down so fast. I lost a year of my life to lymphoma. 

Even now, five years later, it feels like a surreal dream, something that happened to someone else. But the six weeks in the hospital, the stem cell transplant, the ugly 13” scar, and the multitude of little ones on my body, from tubes and biopsies, attest to the fact that it did indeed happen to me. 

After six weeks flat on my back in the hospital, I had to learn to walk again.  And I needed someone to help me out.  

Admitting I Need Help

Now, you must understand that I have always prided myself on my independence, my ability to take care of myself—married or not! Yet to have to admit that I wasn’t physically able to run around at my usual speedy pace was, in a surprising and strange way, a relief.  So I gave myself permission to take time to heal and to let my darling husband care for me.

Bob is the nurturing type.  He gets lots of his jollies by being helpful to others, a great trait in the broader scheme of things.  I decided to let him care for me, coddle me and generally spoil me.  Frankly, how often do any of us have this:  times when it’s simply okay to be weak, and evenings when someone will go out and bring home ice cream and a jar of hazelnuts at the merest hint?

Without Bob’s advocacy, support, and care while I was in the hospital, I doubt that I would be here today. I was really sick—the kind of sick when they tell you to call people who are close to the person in the bed and tell them to get down there pronto. 

Too Pooped for Charm

While I was in the hospital, Bob pursued the doctors relentlessly to make sure that I got the proper care.  When I got home, he took care of everything.  He shopped, cooked and cleaned, took me out for excursions when my strength started to return, drove me to doctor’s appointments and made my journey back to wellness part of his daily routine.  My gratitude to him is boundless.  I know I would not be writing this article without him dogging my steps, making sure I took my medications, that the shower stall had a grab bar installed, that I ate.  He even kept friends and family at bay when I was too pooped to be charming. 

Needing Space

But there came a time, as my strength returned, that for my own sense of well-being, I needed to start doing things on my own. And the stronger I became, the more I wanted to and needed to.  I had to let him know, that though I would always need him, I didn’t need for him to take care of me so intensely. I gently suggested that maybe he had other things to do than to hover over me. When that didn’t work, I carefully picked the moment when my take-charge husband might be more receptive. Humor helps.

So I put my arms around him, kissed him and told him he was—fired!

At first he was taken aback by my blunt message, even though it was delivered with hugs and a kiss. Guys like to fix things and don’t always know how to respond when the thing needing repair doesn’t need fixing anymore. But his gentle heart heard me—and ultimately he found his way back fully into his own life. 

Unaided Steps

When I was ill and weak it was lovely to give myself permission to be cared for, when for so many years caring for others had been an important part of my identity. But as I gained my strength, I found all the attention began to chafe. So for those of you returning to independence, recognize that part of the journey to wellness means taking those steps unaided and that there may come a time when you need to gradually disengage from your caregiver who won’t know just how much better you are the way you know this. Your beloved caregiver has invested a lot in caring for you and needs to get clear messages from you when you need to be more independent.

Pick Up on the Clues

For those of you caring for someone, I’d say don’t let caregiving become your reason for being.  Be alert for the signs that the object of your attention may not need so much so intently at some point and recognize that there may be conflicting emotions as a loved one returns to wellness. You have felt useful, productive, and important in your role as caregiver, even as you sometimes rail against the constraints of always being on guard and perhaps feel angry and overwhelmed by the responsibility. 

Communication is the key. Listen to those subtle cues that so much attention is no longer needed. You’ve given up part of your identity, maybe even made care giving your vocation and put the rest of your life on hold. Claim it back. Your loved one is giving you permission to do so. 

I know that Bob struggled with the tunnel vision that comes to many caregivers as they concentrate on the needs of their loved one. But he learned that just saying, “Oh, poor baby” was enough when I was cranky, and eventually adjusted to the fact that I could go out by myself and return safely and that I needed him to be independent of me. 

A Job Well Done

The dynamic tension between caring and overbearing can challenge any relationship.  When you provide care for someone, you may feel that your way is the right way and that you know what is best for that person. Issues of power and control may surface. When the person doesn’t follow your advice you may feel resentment and anger. And yet, sometimes you need to step back and let your loved one take those shaky, tentative steps towards independence. It isn’t a criticism of your caretaking skills. In fact it is a testament to a job well done.  It often helps to ask yourself how you would respond if the tables were turned.  Why, what a surprise!  You might be just as cantankerous and ornery if your excellent advice were disregarded. 

Life Aafter the Firing

Caregiving can be an emotional roller coaster –and it can go on for a few weeks or a lifetime. In those instances when someone who is ill or disabled gradually becomes more independent, giving care includes letting go. I’m happy to report that Bob and I got our lives back on track. I’m well; we’re both working and playing.  Now we nurture each other in equal measure.  

Penny Pearlman is a motivational speaker and strategic consultant in the for-profit and nonprofit sectors. She helps clients find solutions for success. An avocational artist, she lives with her husband (whom she fired as a caregiver), in Westport, Connecticut.

This article was originally published in the Summer 2005 issue of Caring Today magazine, page 26. Reprinted with permission from Caring Today magazine: www.CaringToday.com

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Caring Today magazine offers practical advice for the family caregiver. To subscribe to Caring Today, click here.

This article was originally published in the Summer, 2005 issue of Caring Today magazine, page 26. Reprinted with permission from Caring Today magazine.

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