Saturday, September 27, 2008


Over the past ten years, I have talked to many caretakers of ill partners. Many have been angelic; many have been depleted; all, in their own ways, are heroic. Here is a montage of what I have heard. I am interested in what you have to add from your experience

How profound and humbling and degrading to prepare bland, easily digestible foods and spoon feed them to your partner who on that day at that time is too weak or feverish or pained to be able to feed himself. To wipe the sweat from his face after rounds of chemo. To maneuver him into the shower and wash the urine that leaked down his legs from a bladder no longer control in his control. To run to his side when he calls out, fearing that, this time, something really bad happened.

How sacred it feels to read aloud to him from his favorite novel until the strain etched in his face by pain slowly softens, and he slides into sleep. To hear him snore is the sweetest song.

How desperate and hopeful and tedious it feels to discuss endlessly the algorithms of treatment options. Should we (not you) stop this medication, which seems to be losing momentum, and switch to that medicine, which has untested side effects? Should we travel to Johns Hopkins or the Mayo Clinic or the Cleveland Clinic to see the specialist whose monograph on gene therapy or angiogenesis we stumbled across in one of hundreds of web searches? Would it be bad or good to combine acupuncture, Chinese herbs, and chemotherapy? How do we know whom to trust?

How rageful it is to lose the time you were supposed to have, the money that was to build a retirement cottage on the lake, the thousands of moments that were supposed to flow without constraint from one mindless activity to the next.

How tragic when your sacrifices are met with indifference, resentment, or manipulation. When the sick person instead of gratitude, shoves his resentment at his own condition in your face, onto your shoulders, inside your head, and demands of you what will never again be his. And when family and community expect you, without permission, to truncate your world in order to extend his comfort and safety. And when you berate yourself for an instance of selfishness, and eventually have been worn so thin that you can no longer distinguish between selfish and selfless. When automatic pilot takes over your behavior and you shut down all feeling except anxiety.

How relieving and terribly lonely it is when it ends. And what a long way it is back to rebuilding yourself.


therapydoc said...

Yup, it ain't easy. Wishing you, in any case, a happy, healthy new year.

Kerry said...

How absolutely beautiful! Just discovered your blog Barbara and am grateful I did.

As a half of a couple who has been challenged by chronic illness for twenty years, what a find your blog is.

Barbara Kivowitz said...

and a sweet and heallthy new year to you therapydoc.

Barbara Kivowitz said...

Hi Kerry and welcome. Thank you for your kind words. I hope to get to read more of your thoughts here too.

Annie Metal Girl said...

I was my late husband's sole caregiver and experienced all that you wrote about. Thank you for your post.

God bless you!!


Donna B. said...

I was only one of several caregivers to my stepmother, but I will never forget the night she said, "please, just lay down here beside me and warm me to sleep."

The day before she died, I was still laying beside her and holding her even though she could no longer ask me to do so.

I felt this was a kindness she was giving to me. My mother had died suddenly and alone. I am grateful to my stepmother for giving me the opportunity to comfort her.

Barbara Kivowitz said...

Annie - I am sorry for your loss. I hope you are finding your life.

Donna - what a powerful story. Thank you for sharing it.

Annie Metal Girl said...

I was with my husband when he passed. I was holding his hand and talking to him. His passing was peaceful. I have never seen a person die before.

Barbara K. said...

Annie - I am sorry for your loss. I hope you are finding your life.

Donna - what a powerful story. Thank you for sharing it.