The hard talk

If any of you have a loved one with PSP, or any other degenerative disease, do have a look at Dr. Atul Gawande's "Letting Go" in the latest New Yorker.  It's a discussion of the value of knowing what folks want as they face almost certain death, and the value of palliative care during their last days, even if they elect to continue medical intervention.

Sadly, I had to have just such a talk last night. Not with my Mom, who isn't able at this point, and who in any case had thankfully made a living will long ago, when she was of sound mind. No, this time it was with my father, who has advanced cirrhosis thanks to iron overload in his organs. We don't really know the cause of it; he probably doesn't have hemochromatosis, a genetic disorder that causes the body to retain, rather than excrete, excess iron.  In any case, his liver is badly and irreparably damaged, with horrible side effects.  I'll spare you the gory -- and I literally mean gory -- details, except to throw in that a botched liver biopsy, in which one of his lungs was punctured and collapsed, greatly deteriorated his overall condition. Every time I hear a thump somewhere in the house, I listen or go check to make sure it's not him, on the floor again, vomiting blood.

Florida or bust.

He's living with me now until he regains some strength, and also to see a top hepatologist in New York, to see if he is a candidate for a liver transplant. What spurred our talk was me trying to ascertain, gently, how he wants to live the next few years. I can't uproot my family to Florida, where he lives, but I want him to live in his home if he can, as he plotted and saved and sweated for decades to buy his dream home there. Clearly, though, he can't live completely independently. So that means hiring a housekeeper/nurse to check in on him.  Keep in mind he's only 65 years old.  We still can't believe this is happening to him, to all of us.

How strange that only six months ago we were placing ads to find a nurse for Mom. She's doing well in assisted living -- not that I'm able to check on her regularly, as she's far, far away in Florida, too. What a mess. I know I'm not the only one in this situation.  It's the flip side of having our modern, peripatetic lives.  We get move to sunny climes or exotic cities at will, but I can also see the value of having an extended family all under one roof.