April 2010


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So, a week and a half since the last emergency, and I’m back to waiting for the sound of falling shoes (which often strongly resembles the sound of falling fathers). Dad seems to have a closet-full of shoes just waiting to hit us on the head whenever we start getting just a tad too comfortable in our routine. Sure, things seem fairly quiet – today’s lung doctor appointment seemed to clear Dad of any serious lung-disease concerns, and he has happily (if not terribly successfully) rejoined the ranks of poker-playing old guys at the senior center. But the specter of his shifting blood pressure continues to linger.

In fact, Dad’s primary care doctor thinks the blood pressure condition has become a chronic part of Dad’s physiology. His blood pressure in the morning can be very low, and can shift quickly – typically further downward, but, more recently, upward – when he stands. The doctor has cut anything that could be contributing to the problem – notably the Flomax and the diuretic – but the problem persists. Now he’s added fludrocortisone in an effort, I believe, to help Dad hold onto some fluid, and, so, build up his blood volume a bit. Things are a little better when I can get Dad to concentrate on getting fluid into his body, but when the visiting nurses had me keep track of all the fluid he took in during a day earlier this week, I saw that he was only taking in about a liter – half of the two-liter goal he’s supposed to be shooting for. And that was with me filling glasses and setting them down in front of him. Short of water-boarding him, I just don’t know how to get him to drink more. He even sips his Scotch so slowly now that it takes him almost two hours to finish his cocktail-hour double. I never thought I’d feel sad to see him drink so slowly.

The side effects of this new drug look kinda scary – it’s a synthetic steroid that sounds like it can do nasty things about 18 different ways, though Dad is on a pretty low dosage (I think). It just brings home the fragility of his body, and the delicate balance of risk and benefit he’s living with these days. The new drug may encourage high blood pressure and put added stress on the kidneys, but the low blood pressure he has now can easily lead to more falling incidents, which are significantly more dangerous in the short term.

On the plus side, the lung doctor today did a quick-and-dirty breathing test that showed Dad is actually breathing quite well. Afterward, though, he suggested Dad get a more thorough version of the test to help answer a couple of questions today’s test raised in the doctor’s mind. When I pressed him on the real need for the test – after all, today’s test, along with Dad’s personal impression, indicated that his lungs are working much better than they were a couple months ago. The doctor suggested that a more intensive test would establish a healthy baseline, in case, a year from now, problems emerged. In my head, I was wanting to scream, “ARE YOU NUTS?” A year from now, if Dad’s still alive, his lungs likely will be the least of his problems.

So, we shook the nice pulmonologist’s hand (and he really is a nice guy) and said we’d see him when we see him. Then we made it back to Brewster so I could drop Dad off at his poker game. He hobbled his way up the ramp to the door, waving as he went, with me wondering just how long his current hand of reasonably good health (for him) would last.

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So, I was settling into my Monday routine this morning, looking at the four phone interviews scheduled on my calendar. It would be a busy, draining day, but those four interviews would help me get two articles written this week and help get me back on my deadline track – still underwater, but at least seeing the surface. Then I heard a thudding crash from the downstairs bathroom, and my day’s schedule fell to the floor and broke into a thousand pieces.

I rushed downstairs to find the bathroom door closed.

“Dad? Did something happen?”

Weakly, from the other side, “Yeah. I fell.”

I opened the door to find him sitting on the floor, in boxers and a tee shirt. He had been sitting on the closed toilet for a moment or two, as he’d been feeling lightheaded while brushing his teeth. While reaching for one of the several bathroom grab bars, he missed his target and fell. I could see a big abrasion on the top of his left hand, like he’d dragged it across the bead board wainscotting, or maybe the porcelain, slate-patterned floor. I made one brief attempt at pulling him up by his hands, but realized his extremely weak legs would make the effort futile.

“I can’t get you up, Dad. I’m calling the EMTs”

“Shit.”

So the three amazingly nice EMTs show up (all the EMTs here are amazingly nice – and very calming), get him seated on a chair in the living room and we all noticed he also had a cut on his eye – not his lid, actually on his eye.

“O.k., we’re going to take you to the hospital, sir – you need to get that eye looked at.”

“Why?”

“It’s bleeding.”

“Well, just give me some gauze.”

“Dad, you’re going to the hospital.”

“Shit.”

So the routine from two weeks ago, and a month ago, and the month before that played out all over again. Dad gets driven off in his big, red limousine, and I walk purposely throughout the house, gathering clothes, in case he’s released, packing laptop into backpack, because the hospital’s WiFi connection is much better than it’s cellphone service, letting the dog out one more time and heading to Cape Cod Hospital, where I set up my satellite office in a stackable plastic chair at the foot of Dad’s bed. Unfortunately, this time around, we didn’t get one of the little room-ettes; instead, his gurney is pushed against the nursing-station counter in a busy hallway.

The plus side of this location is that Dad can stay engaged just watching all the activity around him. And it gave me a chance to reflect on the oddness of the ER universe. It’s Monday morning, around 10:30 or so, and the place is jammed. The center of the room is a big, open-office style arrangement of desks, outlined by an oval-shaped arrangement of counters, broken by 3- to 4-ft. wide passages for nurses and doctors to pass to and fro. Patients in gurneys are pushed up against the counters’ outside walls in the four surrounding hallways, which are, themselves, lined with the room-ettes.

Within the nursing-station oval, nurses, doctors and aides circle around each other like the swirling pieces of rock in an asteroid belt. They are each individual, but they’re also interacting with each other as though it were any other office space – a newsroom, say, or an open-plan consulting firm floor. They roll their chairs over to an adjacent desk to ask a colleague a quick question, poke their heads up to check the day’s staffing schedule on a whiteboard, yell out a question or a sarcastic remark, all as though not surrounded by patients wrapped in sheets and distress. When they cross through the counter and walk through the patient spaces, there is no eye contact with those bodies on gurneys, except with any particular patient to whom they might be tending. The same lack of eye contact also is the case between patients and their family members and any other patient group, though they may be mere inches apart from one another. Each seems surrounded by its own gravitational field, holding itself intact by not recognizing the existence of the surrounding chaos.

Eventually, after x-rays and a CAT scan, we find out that Dad’s badly dehydrated, and his blood pressure is even more orthostatic than usual – that is, it drops precipitously when he goes from lying to sitting to standing. At standing, it was 68/32. Yes, I said 68/32. And he didn’t feel dizzy. Talking Dad through the event of falling, it turns out he doesn’t remember the fall itself, so it’s quite possible he simply passed out in the process of standing up. The eye is a bit concerning, but it’s in the white, not the retina, and his sight seems to be obstructed only by the small dab of antibiotic ointment placed on the wound.

The dehydration/blood pressure issue gets Dad checked in, yet again. It’s a maddening situation, because I don’t know how to get more fluid into him, short of setting up his own in-home drip line, or sitting by his side all day to hand him a glass of water to sip every 15 minutes. We’ve been dealing with low morning blood pressures since January, at least, but it seems, now, to be affecting him more. Sitting in his hospital room, waiting for the hospital doc to show up, I’m starting to wonder if we need to get someone in every morning – not just his twice-a-week shower days – to help him through the getting-up process. I do the math – $25-$30/visit, times 7 days a week, and we’re looking at $800/month. Sure, it’s cheaper than a nursing home, but an extra 10 grand a year does have a financial impact. We could go the drain-the-assets Medicaid nursing home approach, but I’m pretty sure he’d misery himself to death in that environment in pretty short order.

My mind feels both resigned and spinning at the same time. Two weeks between this admission and the last. Three weeks between that admission and his week-and-a-half stint in the rehab center. Three weeks between that rehab-center stay and his previous hospital/rehab-center round. Maybe another med shift could help – the hospital doc suggests moving to only one Flomax a day could help the blood pressure, but then he may not pee as easily, or have to get up and down more often, which both pose their own risks. This isn’t a maintainable pattern, but I don’t know how to break it without breaking his health, my heart, or both at the same time.

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So, it turns out the superstitions preventing me from completing my census form before April 1 were well-founded – Dad had to get EMT’d to the hospital on the current decade’s designated day of reckoning. Of course, since he was in the house for at least part of the day, I counted him as a resident – but I also checked the box indicating he sometimes lives in a hospital or nursing home. We journalist types can be very literal.

Fortunately, the stay was only for a couple of days. This visit was the result of yet another medication adjustment. New research from the manufacturer of Plavix – a must-have med if you’ve recently had a stent installed – indicates that taking Prilosec (aka, omeprozole) at the same time can cut Plavix’s anti-clotting capabilities by up to 50%. Now, since Plavix has the unfortunate side-effect of ripping your stomach lining to shreds, Prilosec is a frequent presence on a Plavix taker’s prescription list. The doc, on learning of the problem, switched Dad over to a different stomach-treater, called Protonix. A day later, Dad began complaining of abdominal pain. Two days later (Monday) he began becoming constipated. The next day, we visited the walk-in clinic where the physician’s assistant switched Dad temporarily back to Prilosec, suggested he take one dose of Milk of Magnesia that night, and also let us know that the nasty urinary tract infection was still around, meaning another round of Bactrim was in order. The next day (Wednesday) the visiting nurse came by and, with Dad still constipated, suggested one more dose of Milk of Magnesia that morning. About 8 hours later, both doses kicked in at once, beginning 12 hours of debilitating diarrhea – not always within range of the toilet. It’s a good thing I’ve had plenty of experience cleaning up after sick pets, because it helped me put my mind into that “let’s just not think about it” place when I had to pull out the mop and pail.

One blessing during the whole affair was the fact that my sister was here visiting when the worst of it all came down – or, rather, out. She arrived late Tuesday night. We spent the day Wednesday tending to Dad, who at that point was bedridden with the continuing abdominal pain and constipation. And Thursday morning, into the afternoon, it was wonderful to have her company in the ER, while waiting to see if Dad would be admitted, and then getting him settled into place and answering the nurse’s questions up in the ward. Then we took Dad’s credit card out for a very nice dinner. Terry and I had a great meal, and the credit card got some exercise, so we all came out ahead.

As I said, Dad was out by Saturday, in time to go to the Easter brunch  he’d been looking forward with great anticipation. But during his two days in the hospital, Terry and I talked a lot about the situation and my ability to cope with it – she expressing concern that it was getting to be too much for me, and me expressing my thought that putting Dad in a nursing home (there’s not really money for assisted living, and he may need too much a la carte care to make it feasible, anyway) would be the end of him in very short order. We even met with a representative of one of the local hospice groups to investigate that option.

Monday evening, with Terry set to leave the next morning, she and I brought the idea of hospice up to Dad. The hospice group medical director said he probably didn’t qualify yet medically, but I wanted to introduce the concept, with Terry around, and maybe de-scare-ify it a little bit. It doesn’t mean we all think you’re going to die tomorrow, and you won’t get bumped if you don’t die soon enough – that kind of thing. Mostly, we just wanted to help Dad understand that he had some control over any future medical interventions.

After dropping Terry off at the airport bus stop, Dad and I continued this talk with his primary care physician. The doctor agreed that Dad probably wasn’t a candidate for hospice because he was still responding well to hospitalization/rehab center treatment. But, he added, there might come a time when Dad might decide he just didn’t want to go to the hospital anymore, and it was valid at that point for him to make that decision. That’s when hospice could become invaluable.

Then,  when Dad said he just wouldn’t want to be a burden to me by not going to the hospital, the doctor said a really nice thing.

I stepped in first. “You’re not going to be able to make that decision in the middle of an event,” I said. “You need to make it when you’re well and we have backup in place – but hospice can help with that, and we can make it work.”

At which point the doctor added, “Chuck has been with you all through this, and he hasn’t stepped back from anything up to now, so I don’t think you have to worry about him handling anything down the road.”

So, we’ve started a conversation, and I think I see a little better how the situation might end up playing out. Already, just a little more than a week since he left the hospital feeling great, his blood pressure’s starting to fall again and his energy’s beginning to lag a little. I don’t like doing too much of my own prognosticating, for fear that my internal predictions might actually lead to a poorer outcome, but I’m guessing he’s 4-5 weeks from another event of some sort. He makes it clear every time I end up calling the EMTs that he doesn’t want to go to the hospital. Once it really starts sinking in that he can control that, our conversation about future treatment options may continue – and he may decide he no longer wants to be a periodic resident of a nursing home or hospital.

I wonder if the Census accepts do-overs.

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