I'm about to give a talk to a group of family/friend caregivers and decided to look back into this blog's history to see if there was anything I could include in my talk. I found the piece below. It took me back a year and a half ago when Richard, my sweetie, had open heart surgery and I went from being the designated patient to becoming his caregiver. I realized then that, if I could choose, I'd rather be the ill partner than the well caregiving partner having to watch my beloved suffer and be unable to make it all go away.
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 family and community expect you to sacrifice endlessly for 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.
How profoundly sweet it is to know that you are helping, you are making his life worth living, even though you can't make him well. You are making him better. How very special it is to have found that, through illness, you have been able to rediscover how much you truly love each other.