He fell… again, sustaining a mean forehead gash requiring sutures. The medics were called and they raced to the Kaiser ED in Honolulu at 3 a.m. After suturing, a head CT revealed an intracranial hemorrhage. Guess his daily baby Aspirin will be stopped. The internal medicine doctor admitted him to the hospital and he waited there, on a hard gurney in the ED, twelve hours for a hospital bed.
“That’s not uncommon Mom,” I tried to soothe her with helping her understand. “If the hospital is full, someone must be discharged home before he can have their bed.”
Initially, there were hourly neuro-checks and talk of burr holes to relieve the pressure. Technology is amazing. My sister sent a text message, including a photo of the over-bed monitoring screen, asking for explanation and interpretation. It flew transPac and landed in my iPhone moments after being sent: Dad's heart rate, blood pressure, mean arterial pressure, and respiratory rate.
By nightfall he seemed over the burr-hole hurdle. Then abruptly, his laceration began bleeding again. A nurse stood at the bedside for a long time, applying direct pressure to unsolicited complaints of pain.
“How ya doing Dad?” Someone held a phone to his ear. Sometimes he doesn’t know phone or its use.
“Oh, I’m surviving.” His speech was thick and slow, as if he was drugged. We talked briefly, until he quit.
My sister texted: If his forehead is bleeding, what are the chances he’s still bleeding in his head?
Exactly, but no one wants to perform surgery on a demented old man. And it’s not the dementia, it’s that, in medical vernacular, he’s piss-poor-protoplasm for a surgical procedure. He’s old and he’s bleeding. They cut? He’ll bleed more.
Continued bleeding into his head will cause mental status changes. They will monitor his mental status in an effort to avoid surgery. Barring nocturnal disaster, he’d head for the CT scanner again, next day.
This is his path, I tell myself, get used to it. Did you know that 40% of us will die of diseases related to dementia and frailty? We will fall, break a hip, and die of subsequent, hospital acquired pneumonia. Our interest in food will wane and - wither we will. Our families will command that we eat and force-feed us while our doctors enter a new diagnosis into our electronic medical record: failure to thrive.
“How do we help people live well if they must live sick?” our Palliative Care Chief asked recently.
“He is no longer able to independently create moments of happiness and joy for himself.” During my recent visit, Mom and I discussed giving him the experience of having a life of love. “Those moments must be created with him and for him – by us.”
How does Dad live well while he dies? How do we keep him safe without imprisoning him? How do we prevent falls while preserving dignity in the bathroom? How do we create the best quality for his remaining life and his experience of that? What is it going to take to give him the experience of being loved and cared for and how will we do that?
And how will we take care of self? Where do we renew and rejuvenate? Where is that well of compassion and patience for self and others? Oh, were it a dew pond for daily dipping.
A second head CT scan imaged a stable clot. Dad is now being evaluated for discharge home and safety issues abound.
How do we live well if we must live sick? It’s a powerful question.