Well, I think the fickle finger of fate that has been guiding my life the last six to eight months may be about to move from the pause button back to “play.” Dad is improving in rehab, as expected. He’s still using a walker – I believe, with assistance – but yesterday he made himself a grilled cheese sandwich during his occupational therapy session. I’m guessing a souffle will be today’s recipe of choice.
There’s a case management meeting this morning, and I’ll probably have a notion of when they’ll be sending him home after that. The center’s social services manager only has to give us 48 hours notice, so it could be as soon as two days from now. I also could end up with another 5-day respite – my memory is that Dad’s Medicare Advantage plan authorizes rehab stays in 5-day periods. But, either way, my rest break will be ending soon.
Following his return, there will be a circus of visiting nurses and physical therapists for a month or so, which can be pretty disruptive for a work-at-home writer struggling to meet deadlines and stay on top of his father’s healthcare issues at the same time. But that’s just a mere nuisance compared to what I really dread: the waiting and watching for signs that the whole downturn-to-hospital-to-rehab roller coaster ride is beginning again.
First, there’s the healthy bit – that’s like the slow, uphill journey the best thrill-ride designers build into their attractions. Like my favorite retro, wooden coasters, this trip is filled with creaks and groans that add to the tension by providing a frisson of fear that the whole structure is about to collapse. Then you reach a high peak, with a crisis. That’s the turning point, where you can see the chasm into which you are about to be pitched. There’s usually a brief pause at that point, where you come almost to a stop and take in the coming view, just before your car goes over the ridge and starts accelerating to breakneck speeds.
I just read an article on the NY Times online health page that presented, heartbreakingly, what this roller coaster ride can do to the psyche. I don’t want to risk the wrath of copyright-sensitive lawyers by pasting the whole thing here, so take a minute and read it – http://www.nytimes.com/2010/01/26/health/26case.html?ref=health – and then come back.
…Did you read it? Well, maybe not. So, in a nutshell, it describes, first person, the umpteenth ER trip the writer had made to meet the ambulance bringing her father from his nursing home bed to the hospital. Unable to speak, he communicates to her – with doctors and nurses surrounding them both – his desire to be intubated, yet again, despite all evidence that such a move would only prolong his misery. His liver and kidneys were both failing, and his lungs were filling with fluid. The writer was now at that peak, that brief pause before rapid acceleration. But this time, there were two possible journeys: she could communicate her father’s wish, which only she knew and which he communicated to her through the slightest nod of a chin; or, as his healthcare proxy, she could request only palliative care, which would help him feel comfortable, but not address the critical conditions that soon would kill him if not dealt with quickly and aggressively.
The writer, Alicia von Stamwitz, takes a deep breath and expresses her father’s true wish for treatment. But she’s honest enough to admit that, at that peak in the ride, for just a moment, she saw the two courses her personal ride could take as equal options. As it turned out, with the choice of aggressive treatment, her coaster ride played out just as she had envisioned – her father never left his hospital bed, and lasted six months, intubated, on dialysis and with a feeding tube, before he died of heart failure.
Dad hasn’t yet reached anything like the level of disability von Stamwitz’s father was at on his last ER admission. But the hospital doctor who saw Dad during his own ER trip two weeks ago pulled me aside after his consult to ask if I knew Dad’s end-of-life wishes. I’m grateful Dad has requested no heroic measures, at least in the hospital and rehab center. But I saw in von Stamwitz’s account one route my own coaster ride could take, with its own peak and decisive declaration. I’ll be carrying her story in my mind as I hand the 17-year-old attendant my E ticket (this is a premium attraction, after all), and step into the deep-seated car. I hope he slams that guard rail in place securely, because it just might be a bumpy ride.