Wednesday, August 16, 2023

A New Act

It's been a week and a half since we started Dad on hospice.  With his heart failing, his kidneys failing, and the bloodflow to his feet failing, and with no viable long term treatment path for any of those conditions, it was time.  He'd made it to his grandson's wedding, made it to the beach for a week of ocean breezes and family, and that meant both of the long term "goals" for survival had been met.

Adapting to that shift has been challenging.  The laundry list of medications, now whittled down to only those necessary for his "terminal diagnosis."  The complex care doctors and the network of specialists on whom I'd been relying for guidance, now set aside and replaced by a helpline.  A helpful helpline, to be sure, but different.

The relentless focus on diet, loosening.  We are no longer doing everything possible to keep him alive.

And that's been a difficult transition.  My learned instinct, from the last several years of helping with his care, is to be hypervigilant, to be constantly in a state of threat-assessment.  If his weight went up, what did that mean?  If his BP was too low, was that a concern?  If his affect changed, how did we need to respond to that?

Because if we didn't, it might mean death.  Mortality was on the line.  There was a bright, simple clarity to the purpose of each step along that tightrope.

Now, though?  Now things are hazier.  We've not given up, or chosen to expedite death.  The twofold goal is that he not feel pain, and that he be present for as long as he is present as a person, that there be some pleasure in life.

The challenge is that those two goals are often in tension.  Personhood and an absence of suffering often are at odds with one another.  He has struggled to sleep at night, and asked for sleep aids to help get him through the night.  But those sleep aids have left him drowsier during the day, folded over and drooling onto his shirt, difficult to rouse.  

Is he comfortable?  Yes.  Is he getting pleasure from life, savoring his last chapter?  No, not really, not if he's twitching and mumbling incoherently in his wheelchair.

So the balancing act has changed.  The threat has changed.