I've heard from a variety of caregivers that hypervigilence -- that constant monitoring of every move, every breath of your loved one -- is a common source of caregiver exhaustion.
I know people who care for their adult parents, listening in on the sounds of the parents' room with a Fisher Price baby intercom.
I, too, watch for every subtle change, every nuance in Steve's body language as I try to insulate him from the infirmities of End Stage Renal Disease and diabetic neuropathy. It's the diabetic neuropathy that renders his gait unpredictable, along with his widely labile blood pressure and the occasional profound hypoglycemia that can dull his response time or make him a bit "loopy." Yesterday, as we did a little food shopping and enjoyed the luxury of an evening musical event (Uncle Bonsai on Bainbridge Island!), I physically caught Steve four times. Four falls averted!
For Steve, a fall could be disastrous. A fracture would delay any hope of a kidney transplant. But even a non-healing stubbed toe could lead to an amputation!
The transplant window is narrow: you have to be healthy enough to be considered. And something that's seemingly inconsequential could ace him off the list for good. People die waiting for kidneys, and time is not our friend.
How do other caregivers cope with this worry, this unrelenting responsibility? You certainly can't just "hope for the best." A fall prevented is a crisis averted, so the vigilence does make a difference. How do you "glide above it all" or not let it get to you? Do you relax your standards, or have you found some mental coping tool?
I'd love to know the secret. Please let me -- and other caregivers -- in on this one.
Take care. Linda Gromko, MD
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