When Patient Becomes Caregiver

I am the patient, the ill partner, the survivor.  Call me what you will.  I am the one with a chronic pain condition.  A lot of the time I feel OK and go out into the world to work, buy food, or just go for a walk.  Sometimes I feel like broken glass is sloshing around my insides, and I become very quiet while all my concentration goes into seeking a position in which I can feel a bit of relief.

Richard, my sweetie, orbits around me and asks me how I'm doing.  He is attuned to my pain state like a sunflower is to the sun's rotation.

In March, Richard had open heart surgery for a congenital valve defect.  We knew this was coming; we just didn't know it was coming so soon.

For ten days, Richard was the bonafide patient, in the hospital, in a greenish hospital gown, with tubes in his chest and in his arms.  Nurses checked his vitals and his heart performance many times a day.  They adjusted his meds as his symptoms changed.  I sat on the couch in his room for 12 hours a day.  I had my pain, but he had become the real patient.  And I hovered around him, alternating between asking him how he felt and attempting to simulate a quiet calmness.  I handed him the phone so he could order his meals.  I celebrated when he took his first shower.  I paced the  hallways by his side as he did his daily corridor walkabouts.  And I worried - just like a caregiver.  We had switched roles.

A few weeks ago we were invited to speak at the Multiple Myeloma conference about my book: In Sickness As In Health: Helping Couples Cope with the Complexities of Illness.  At one point we told this story of how our roles got switched when Richard had his heart surgery.

I found myself saying to the audience of survivors and supporters that I really didn't like the role of caregiver. While this got a lot of smiles and some laughter from the caregivers in the room, it was no laughing matter.  I had grown accustomed to the perks of being the patient -- the attention, the help, the extra doses of love.

But even more importantly, I did not like the helplessness caregivers feel.  I could comfort Richard, but I could not make him better.  I could not take away his pain and worry.  I could bring him food and help him shower and love him with all my might.  But I couldn't make him better.  Time and his own body's strength and his doctors'  guidance got him better.  My love made it more bearable at times, but it didn't heal him.

Richard sometimes says, "If only my love could cure you..."  Now I know what he means.

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This post has been included in this month's PFAM (patients for a moment) collection.  You can see the entire collection at Life With RA Is A Pain