March 2010


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I haven’t written much lately because, these days, it’s just seeming like so much more of the same. Dad’s been back for three weeks now – about the same length of time between the last two rehab stays – and his primary care doctor is scrambling a bit to keep his system in balance. In the process, though, I’m beginning to see signs that Dad might be working toward an acceptance that it’s more likely he’ll be getting worse in the near future than getting better.

The primary problem continues to be managing the dance between heart and kidneys. Dad’s blood pressure continues to trend low, with the systolic (“top”) number sometimes dropping into the high 70s, while his heart rate is running high – possibly in a futile effort to build the blood pressure back up. And he’s starting to feel it more – previously not a problem – with periodic waves of lightheadedness when he stands (or, when he bends over – exactly how he fell in the bathroom last week). The doctor has taken him off the water pill he’d been taking to help keep water from accumulating in his lungs and ankles, leaving it to us to observe whether problem conditions develop over the next two weeks before the next appointment. If the ankles swell or breathing problems return, Dad’s supposed to take one of the pills and call the doctor’s office. The reason: his kidney numbers had gotten worse, and having to process less water could help them recover some.

In the meantime, his energy level is declining along with his appetite. And this afternoon he complained of a “belly ache.” He says it feels like he’s constipated. My brain instantly turned to questions of whether it might be some sort of ulcer, or if his new stomach med might be the cause. This led to a 20-minute consultation with Dr. Internet, which indicated that the med can, in fact, cause stomach pain in some users. We’ll see how he does overnight, and start the phone game with the doc’s office tomorrow, if need be.

My sister arrives tomorrow night for a week-long visit that both Dad and I have been looking forward to. I don’t think I’m being over-dramatic, though, when I wonder if this might be a last visit for the two of them – and if he might be wondering the same thing. We went out to lunch yesterday, and twice he mentioned how he really couldn’t complain about his current aging condition, because of all the wonderful memories he had been able to accumulate throughout his 88 years. It was a summing-up kind of statement that made me think he’s been thinking more about his current state than I might have thought, otherwise. But it also made me glad to see how, even in his extremely wobbly, cane-dependent state, he remains the same glass-half-full kind of guy that, for better or worse, he’s always been.

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I got my census in the mail a couple days ago. I always kind of look forward to filling out the form – the whole “getting counted” aspect of it – though it’s generally a bit of a letdown, in terms of how little the questionnaire actually asks. For a while, in Chicago, I lived at one of the addresses designated to receive a longer, more in-depth version, which made the whole process seem a little more meaningful. This year, though, even the abbreviated standard document has taken me slightly aback, in a way that has me putting off answering even the few questions it poses for at least another week or two.

The reason for my procrastination lies mainly in my extremely literal nature. You see, the instructions state plainly that, “The Census must count every person living in the United States on April 1, 2010…. Do not count anyone in a nursing home, jail, prison, detention facility, etc., on April 1, 2010… otherwise they may be counted twice.” Though April 1 is a mere two weeks away, now, I’m not comfortable predicting that Dad, back at home since Monday, won’t be back in care by the official day of reckoning.

Of course, the consequences of such a double counting, should it occur, aren’t all that critical, and maybe one more 88-year-old added to my little town’s population assessment could put it over the top for some hidden mountain of stimulus cash. But, in addition to being very literal, I’m also just a little superstitious when it comes to making assumptions. As a firm believer in the ass-making risks run when one assumes, I often couch both my actions and my speech in what I’m sure are, at times, a tediously complete list of caveats.

This current caution is based on some freshly taught lessons. When Dad got released from his rehab facility back in early February, I assumed the re-jiggered medication list had solved the low-blood-pressure issue, and that he was actually on the mend. The first of those assumptions was proven wrong within five or six days, when his systolic pressure (the “top” number) began toppling into the 80s again. And the second assumption fell a week and a half later, when he took his second fall in three days, resulting in his re-admission into rehab.

The back-and-forth negotiations that led to Dad’s Monday release provided no assurance that any further assumptions regarding his possible progress would be much more than optimism of the potentially cockeyed variety. The nurse practitioner managing Dad’s case for his primary-care practice flat out said that nobody would be surprised to see him back at the facility sometime soon. The last few days’ blood pressure readings, down into the 80s, have provided evidence for her pessimistic prediction. This morning, after a wonderful salt- and Scotch-fueled St. Pat’s dinner with neighbors last night, his blood pressure reached up to 131/55 – just over the 130 systolic parameter attached to his medication. An hour after I gave him the half-tablet he now gets (one-eighth of what had once been his standard daily dose), the pressure had dropped to a scary 77/48, prompting a call to the doctor’s office and orders to hold that medication at least until Monday.

But, as the calendar pages turn slowly toward April 1, I realize there is a larger, more important lesson that can be learned by all this uncertainty. Maybe this is just my assumption aversion raising its head again, but I’m drawn to the observation that even those in the best health today might be being overly optimistic in filling out their forms before that April 1 date. It’s maybe a cliche to pull out that old canard regarding the possibility of a run in with a bus while crossing the street – but, really, in all of our lives there are examples of life being very different a week later than it was the week before.

So, I’m holding onto that census because life, though complicated now, is good. Spring is beginning to arrive, I had my first (somewhat frigid) barefoot-in-the-bay experience for the year this afternoon and Dad still has enough of a sense of humor to make jokes about his meds. Thirteen days from now, life might be very different. But, for now, I want to hold onto that picture until it becomes time to take the virtual snapshot of my household represented in my census response.

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So, do you remember that game called, maybe, “I spy,” that we used to play as kids, where the trick was to remember an ever-growing list of random items? “I spy a car.” “I spy a car and a tree.” “I spy a car and a tree and a log.” “I spy a car and a tree and a log and a pair of scissors.” Etcetera, etcetera, etcetera…

Well, every time Dad comes home from rehab, I feel like I’ve moved onto the next round of “I spy.” Last time, it was the need to check his blood pressure before his regular morning and nighttime meds, to make sure it was high enough to warrant his Metroprolol. During his discharge today, I learned that, while he may no longer need oxygen, he does now require a nebulizer treatment three times a day (suggested at 8:30 a.m., 12:30 p.m. and 4:30 p.m., but Dad’s life outside of rehab generally doesn’t proceed according to nursing shift changes). So, we now have a new piece of electrical equipment – the little air-compressor doohickey that we pour the nebulizer medicine into – taking up residence in the living room. Also, because there’s a good chance the Plavix he has to take to keep his new stent from clotting up could also be ripping up his stomach (he’s showing signs of anemia and there was blood in his stool at the rehab center), he has to take a new stomach med 30 minutes before eating.

So, this means we have to start paying even more attention to his morning medications (already, we have to do his blood pressure before the meds, to see if the BP is high enough to warrant his Metoprolol, and then do another BP an hour later for the visiting nurses’ telemedicine department, to see what effect the Metoprolol has had). And we have to remember to give him the stomach med, again, a half hour before he eats lunch, and, yet again, a half hour before he has his evening cocktail and chips. Oh, and we’re supposed to cut out anything, like alcohol and coffee and fats, that might aggravate the stomach further. The latter is not so likely to happen.

And a new blood pressure check has been thrown into the schedule at 2:30 p.m., on top of the two checks in the morning and the last one before bedtime. Again, I doubt I’ll be driving over to the senior center during the middle of his twice-weekly poker games with the blood pressure cuff.

With all these new steps added to what seems like a childhood memory game, it’s hard not to throw myself down onto the floor to engage in a childish tantrum in reaction to these mind-numbing complications. If he’s not ready to leave care, then the powers that be shouldn’t assume that I’m ready and able to pick up all these loose ends. However, the reaction I get from nurses when I state that I work at home seems to indicate a thought that none of this should be any problem. Because, really, how much of an imposition can it be to run down from my upstairs office five times a day to ensure all meds and procedures are taken (or undertaken) on schedule, on top of the two or three visiting nurse/visiting occupational therapist/visiting home health aide appointments. Which, themselves, are on top of the two or three doctors appointments or tests I have to get Dad to every week.

At any given month of the year, week of the month, day of the week, I have between three and five outstanding work deadlines, which, up until the last few months, were enough to keep me on my toes. Now, I’m still trying to make sure each of those clients feels they are my one true love, while also keeping up with the memory game that is helping my father stay alive. Which suggests another age-telling metaphor: do any of you remember that guy spinning all the plates on the Ed Sullivan show? He’d start spinning one plate on a stick that he’d then position into a plate-spinning stick holder, then another and another, until he’d have 15 or 20 of those plates whirling at once. And then the trick became, not so simply, keeping all that centrifugal motion in motion – running madly between the poles to ensure none of the plates came crashing down.

That guy is me, right now, dodging the spinning poles in an attempt to keep the plates holding Dad’s health – and my mortgage – spinning and not crashing. Sadly, Topo Gigio, won’t be along to make everyone laugh if my plate trick fails.

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Q: So, how are doctors like Zen masters?
A: You go to them seeking answers and all you get are more questions.

Ba-dum-dum.

Questions seem to be all I have lately, and no one seems to be stepping up with any answers. The questions began on Monday, when Dad’s lung doctor – who was supposed to be telling us whether Dad had COPD or pulmonary fibrosis – pointed his finger back toward the cardiologist, with an assessment that the problem really was congestive heart failure. The cardiologist flat out told us two months ago, that, no, congestive heart failure wasn’t a part of Dad’s problems at all. Instead, he said his tests showed lung issues, so we needed to see a pulmonologist. We left with the understanding that lung guy and heart guy would talk amongst themselves and see if they could get past this impasse.

Then came the question of when Dad might be coming home from rehab. Initially, the insurance company wanted him discharged by Friday. But then came word that he also is dealing with a methicillin-resistant staph infection in his urinary tract. He’s now on antibiotics for that condition, and the insurer says he can stay until Monday, so he can get a bit more rehab, but then he’s out. I went back and forth a few rounds with the insurer’s case manager, but I’m doubtful I gained him any more time. I’ve also got the nurse practitioner who covers patients from Dad’s primary-care practice checking him out to see if she can see a real need for him to stay longer, but there’s a strong likelihood he won’t meet the criteria for more time.

The issue is that a rehab/skilled-nursing facility is intended for patients who have a medical condition that needs skilled attention or a physical issue that can benefit from physical/occupational therapy. Just having to take another pill twice a day doesn’t meet the standard for requiring skilled nursing, and the therapists believe they’ll have Dad as far along as he can get with them by Monday.

I have a big fear right now regarding Dad’s Monday release. He won’t be finishing up his antibiotics until two days after he gets home. Then, we’ll just have to see if symptoms return. When these antibiotic-resistant infections first started becoming a broader problem, the guidance was to test, again, two or three days after the antibiotics were finished to see if the bacteria was re-emerging. Now, though, since many of us are colonized by these bacteria, such testing may simply be pointing out evidence of non-problematic bacteria, and resulting antibiotic treatment could actually help the bacteria become more resistant.

And, a second concern is that he just isn’t physically ready to be back here, that he could benefit from more physical and occupational therapy. I put this concern to the insurer’s case manager, who put the ball back in my court, with a question of her own: given that there’s only so much such therapy can accomplish, do we have a long-term plan in place if more therapy doesn’t make things better?

The only real plan we have in place is to hope that’s a bridge we don’t have to cross.

But on Friday the nurse practitioner made me realize that we actually may be on a direct course for said bridge. I was talking through my fears regarding the infection with her – especially that Dad could end up back in care very quickly if the infection hadn’t cleared his system. She responded that, with or without the infection, she wouldn’t be surprised if Dad were to need to be re-admitted within as little as a few weeks, given all that was going on with his kidneys, blood pressure and assorted other problems.

Now, one could argue that such a likelihood should be an argument, in itself, for Dad’s continued care. But that kind of custodial care just isn’t what a rehab facility is intended to provide; instead, it’s more the province of a nursing home – the threshold of which being the bridge we just don’t want to have to cross.

So, while I’ve gathered some answers about the immediate situation – the infection is likely not as scary as I initially thought, but Dad’s currently limited mobility actually may be the best he’s capable of doing – larger questions remain. Whether (he’ll eventually need nursing home care, or die before that happens) and when (either of those eventualities will come to pass) are the biggest of these unanswered queries, and I don’t think doctors will be much use in my search for the answers. Instead, I’m attempting to take what I’m calling a Zen-sational approach, and keeping an open mind to allow the answers find me, instead.

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Dad is back in rehab. He fell twice last week, his blood pressure started getting wiggy all over again, he picked up my nasty chest cold, which didn’t help matters any, and by Thursday, after the second fall, I began feeling overwhelmed by the responsibility – how was I going to get him from the bed to the bathroom in an emergency? Shouldn’t he be moving more if he’s got chest congestion? When do I move from concern to serious freak out? Most fortunately, that was also the visiting nurse’s day to stop by and check in on us for the week. She heard my story, took a look at my face, at Dad, flat out in bed, and said she’d do what she could to get him back into care.

The blood tests that were run on Dad’s re-admission show he’s more anemic than he was two weeks ago, to a point that has his primary care doctor getting concerned. His lung CAT scan could be indicating he has both pulmonary fibrosis and COPD (essentially, lung scarring combined with emphysema). His pulse rate is running into the 80s. And he’s not showing a lot of enthusiasm about getting up out of his wheelchair and walking, again.

The latter is especially concerning, because my house is not built for wheelchairs. It’s a two-story Cape, maybe 550 square feet on the first floor, which incorporates a decent sized living room and kitchen, with two bedrooms and a bathroom – not what one would consider an open floor plan. The doorways are too skinny and there’s not enough turning radius for a wheelchair to move around. If my father can’t walk, he can’t live here.

Which brings me to that word that rhymes with “mad.” “Sad.”

Sadness is like the mist over the lens through which I view my life these days. There is a not-unthinkable possibility that I could have to tell my father that we have to re-think our living situation in the near future. And I am seriously wondering if he’ll see next Christmas, my September birthday, the Fourth of July, or, even, possibly, the first day of summer.

So, I interview corporate reps about electrical systems and audit corporate websites for out-of-date content, all to keep the mortgage paid. I do the weekly shopping, trying to figure out whether the hothouse-grown tomatoes are a better deal than the ones that are still on the vine. I try to remember how many bananas I already have in the kitchen bowl. I get the dog out on walks twice a day. I work really hard to get myself to the gym, because of how much better I feel afterward.

And I visit Dad at least once a day, and talk to him on the phone. I schedule the doctor’s appointments – with an existentialist’s skepticism regarding the real point for such an exercise. And I ask the doctors questions as though the answers actually could make a difference, at this point, to Dad’s life expectancy.

Through it all, I am watching my father slowing down. I don’t know if he realizes how serious all these medical issues are, because I just don’t have the spirit in me to force that question. It just seems like every time I walk into his rehab center room, he’s a little bit less. Engaged? Motivated? Alive?

It seems so cliche to mention at this point that I know things eventually will be different. Five – or, maybe, even three or two or one – years from now, that fog will have lifted. Now, though, I’m like that old-school Sherlock Holmes, as played by Basil Rathbone (and definitely not Robert Downey, Jr.), looking out across those moors in The Hounds of the Baskervilles. Do you remember those moors? They were like miles-long cranberry bogs, with a steam that looked absolutely fetid rising up and surrounding them. This is what I see all around me right now. And that rising fog is a sadness so thick I feel like I could take a pie knife to it, slice it and put it on a plate.

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This is your brain on a cold…

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung hacking…

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung hacking, which has you thinking it must be the swine flu, because only the swine flu could have you feeling so bad…

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung-hacking, which probably isn’t the swine flu, but still has you terrified because you’ve got an 88-year-old father living under your roof who hasn’t had a pneumonia shot, ever, in his life…

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung-hacking, which probably isn’t the swine flu, but still has you terrified because you’ve got an 88-year-old father living under your roof who hasn’t had a pneumonia shot, ever, in his life – and then he falls getting out of bed at 8:30 a.m., while attempting to a) clear his oxygen cord out from under his bedroom door using his cane as an oxygen-cord sweeper, and b)carry his two urinals – complete with the previous night’s full quota – to the bathroom.

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung-hacking, which probably isn’t the swine flu, as you a) mop up last night’s quota, while b) telling the nice EMTs that, really, he’ll be o.k., if you can just get him back to bed.

This is your brain on the worst cold you’ve had since 1987, including gut-wrenching lung-hacking, which really isn’t the swine flu, as your 88-year-old father begins showing signs of gut-wrenching lung hacks, like you had 2 days ago, and he’s never had a pneumonia shot, ever, in his life, and you’re ordering him out of bed at 12:15 p.m. so you can get him his meds and some breakfast/lunch before you take in your 1 p.m. conference call, and then get him over to the medical lab for chest x-rays to see if that no-pneumonia-shot-ever decision was, perhaps, a mistake.

This is your brain forgetting the worst cold you ever had since 1987, including gut-wrenching lung hacking, and the father who may have pneumonia but never has had a pneumonia shot, ever, in his life, as you begin searching out airfares and descriptions of lovely Bloomsbury hotels, 2 blocks from the British museum, thinking, “I bet London is beautiful in September,” while managing to keep out of your brain what, exactly, might happen in the next eight months that could make it possible for you to get away from the house that is, for the time being, home to said 88-year-old.

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