Saturday, August 13, 2011

How Could a Caregiver Miss Dialysis?

My husband Steve will have been gone, i.e. dead, for four months as of today. I have slept, almost uninterrupted, for that entire time - not waking up to reposition him through the night.

He wasn't a "typical" dialysis patient, if such exists. He had "Critical Illness Myopathy," and therefore, had limited movement. He was wheelchair-bound. He couldn't move himself to a sitting position or turn over by himself. All activities of daily living required assistance.

Home hemodialysis gave way to home peritoneal dialysis when blood access points became unavailabe. Finally, after a leg amputation, Steve's body just gave out.

My life has been full of changes - the greatest, of course, is that I miss Steve. I'm very busy: with my medical practice, with rowing, with writing. And most of the time, I get by with just managing the busy-ness. It isn't avoidant; I feel more normal when I'm occupied.

I remember when a friend's husband was very ill and transitioned to in-Center dialysis, she commented that she missed doing home dialysis. 

I "got it" then, of course. She probably missed the closeness of the required attention, and sensed the foreboding of the change.

I miss the ritualistic closeness - the time Steve and I spent together in this chosen path. We knew it beat the alternatives hands down: the alternatives being death or in-Center dialysis.

I miss the movies we watched during dialysis, the ever-present cooking shows (even when Steve's sense of taste was altered and his appetite was so limited), the political prorams, and our favorites "Dexter" and "The Deadliest Catch."

I miss the fact that I could do something for him - and with him - that made the nightmare of renal failure more tolerable. Mostly, of course, I just miss him.

Steve's birthday comes up on August 16, just days away. Each anniversary, each special day, brings new rememberences. I'm not sure what I'll do on that day - but I'm sure I won't let it just sneak up on me and blindside me the way the Fourth of July did.

Joni Mitchell's song lamented, "Don't it always seem to go, that you don't know what you've got til it's gone?" Well, I knew what I had - then and now - a good man, a soulmate, a partner.

Take care,
Linda Gromko, MD

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