February 2012

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I’m a gay man of a certain age and, as such, it wouldn’t be out of place for an outside observer to assume me to be a disco fan. However, while I love me some Weather Girls, I’ve always been much more of a New Wave kinda guy. Elvis Costello, Joe Jackson, The Cars, The Police, the B52s (in addition, of course, to Joni in all her early-80s jazz phases) were the musicians who got me onto the floor. The Talking Heads rank at the top of this list, with all their arty ambiguity and surrealistic, mystical imagery. “You may ask yourself, how did I get here?” they asked in “Once in a Lifetime.” “You may ask yourself, how do I work this?” In my early 20s, these lines seemed so deep, yet irrelevant. Today, they seem absolutely prescient.

Today, I had what was, at the time, a natural, in-the-flow-of-things conversation with the nursing supervisor on the floor of the nursing center where Dad’s staying – just how aggressive do we want to be in his care? You see, he’s up 5-7 pounds in the last week and back on oxygen. He’s getting weighed daily, which is more aggressive than typical for this facility and can mean daily or every-other-day medication adjustments. And pushing higher doses of diuretics can mean a great chance for kidney problems. In the end, Dad’s heart may just be about ready to call it quits. So, the nurse’s questions were both justified and humane – treatment or comfort? What’s the priority. I’ll talk with Dad about it during tomorrow’s visit, I said – just one more of those end-of-life kind of conversations that seem to be occurring with the frequency of observations about the day’s weather between Dad and me.

Two days ago Dad & I met with that same nurse, along with the physical rehab supervisor and the nursing wing social worker to talk about what’s next. Well, what’s next, post-rehab, we all agreed was a long-term care room. Dad’s blood sugar is all over the map, ranging from 120 to 210 or higher in any given 4-5 hour period. He can’t walk unassisted, period, and even assisted he can’t go more than 30 feet or so without sitting down. And then there’s the oxygen. And chest fluid. And kidney disease.

So, there I was, the 52-year-old son helping manage medical intervention levels for a guy who, for 75% to 80% of my life has steamrolled over the word “no” like an 8-cylinder pick-up over an unfortunately located baby squirrel. And, at that moment, it seemed completely normal. You see, he’s back to shaking badly enough to make getting a glass of water from the table to his mouth a challenge. Nurses now give him his pills two at a time in a spoon. He can still beat me at gin (o.k., maybe not the best measure of mental competence), but only if I do all the shuffling and dealing and don’t complain if he sometimes ends up with six cards in his hand instead of seven because he’s forgotten to pick up as well as discard.

It all seemed almost kind of normal until I got out to the car. That’s when I flashed back to David Byrne’s 1981 “Once in a Lifetime” lyrics. Byrne was 29 when he wrote those words describing that kind of existential crisis that can wash over you when you find yourself living in the middle of a situation you never would have predicted for yourself.

We’re just about a week shy of four years from the Friday I looked down at my ringing phone to see “St. Joseph’s Hospital, St. Louis,” show up on my phone’s caller ID. I picked up the phone to hear an extremely efficient ER nurse let me know that Dad had been admitted with multiple issues, and that he really shouldn’t be living on his own any more. For the better part of the last four years, he’s had a great life. That state seemed so normal that, I think, both he and I are running David Byrne’s lyrics through our head – to paraphrase, “how did we get here… my God, what have we done?”

What we did was live. We lived lives together that were combative and difficult, with humor and anger, raised voices and apologies. There was never quiet in this house and, as I’ve said before, I’m a guy who thrives on quiet. All I hear now is the Spanish guitar playing through a Pandora radio station. If the last four years hadn’t happened, this might seem perfectly normal. But those four years did happen, and I’m left wondering, “how did I get here?”


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This is a really brief post to recommend one of the best articles I’ve read recently on the issues caregivers face when making health-care decisions for parents. The pressure is extraordinary; no one is giving the other-side argument and all are emphasizing the miracle possibilities. I really think most doctors are simply committed to the oath they take to keep life living, but, as this article shows, there are societal costs that we simply have to face head-on.

The cost of dying: It’s hard to reject care even as costs soar