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I haven’t written since Dad’s hospitalization in late October because, honestly, I haven’t been able to focus on a single issue long enough to write a post. I’ve been living in a bit of a fog for more than 6 weeks now, as Dad made it through 3-1/2 weeks in the hospital and, now, another 3 in rehab. We’ll be coming to a decision point soon, though, regarding Dad’s eventual living situation, and that fog is shifting in nature, from confusion to dread.

As a catch-up, it turned out that Dad did, in fact, have a tumor in his colon. This isn’t a complete surprise – back in February, he had a stool sample test positive for blood, but he refused to have a colonoscopy (read about it here). The tumor was discovered during surgery, a procedure necessitated by the fact that his colon was completely obstructed, causing pain that not even morphine could ease. On the plus side, the surgeon was able to get the entire tumor, and it appears the cancer hadn’t had a chance to spread. On the negative side, though, Dad woke up with a colostomy bag, which is likely to be permanent, since reversing the colostomy would require him to have similar surgery all over again. Because this surgery nearly did him in, it’s doubtful the surgeon would want to repeat the experience.

A number of complications arose post-surgery – he developed thrush in his mouth and throat, which made eating almost impossible for a couple weeks, so he lost more than 20 lbs., and he also developed a case of c. difficile, which is a kind of bacterial diarrhea that can crop up when you’re taking major antibiotics. He was transferred to rehab while still dealing with those issues. His first week or so there were pretty un-productive, but in the last two weeks, he’s gotten on-board with physical and occupational therapy and has actually walked 20 feet or so with a walker.

So, you might ask, with all that progress, why the dread?

At some point in the not-so-distant future – possibly as soon as five days from now, or a week after that – Dad’s going to hit a plateau, at which point his insurance will require him to be discharged… but, to where? I have serious questions about him coming home, but I’m tearing myself up inside knowing that the only alternative is a nursing home – possibly, the nursing wing of his current rehab center.

One big reason for my concern can be boiled down to a simple two-word phrase: the bag. Dad will be 90 next month and has never been what one might consider fastidious. His hands shake picking up a glass of water these days, so, obviously, motor skills are an issue. Even if he’s able to get up out of bed by himself at discharge, his balance will still be compromised. And he’s demonstrated, over and over again, his inability/refusal to stick to health professionals’ instructions for more than a week or so. To me, this all paints a picture of a guy who may be able to pass a nurse’s scrutiny on any given day, but will fall apart after a week or so at home. And I, then, will be the only back-up guy for dealing with leakage issues – or, even, bag explosions (both have happened, even under 24/7 care, in the rehab center), whether they occur in the middle of the night or when I’m in the middle of a conference call.

In addition, beyond the bag, there’s also the simple fact that, despite physical/occupational therapy progress, his health is very fragile. Since his hospitalization, the diabetes that had been merely borderline has become an issue. The nurses check his blood sugar several times a day, and he’s getting insulin shots multiple times a week. Yes, many people are able to deal with blood-sugar testing and insulin shots on their own, but they aren’t learning how to do it all at age 90, with questionable motor skills and even more questionable motivation to stick with the testing routine in the first place. So, again I become the back-up nag/finger-sticker/shot-giver. Of course, his chronic kidney disease, peripheral artery disease and general heart issues also still remain.

Having been through the rehab-center discharge process with Dad multiple times before, I know how the routine works. Once the participants in his weekly case-management meetings come to the conclusion that he’s hit a plateau, we’ll have 48 hours to figure things out. Because of everything I’ve mentioned above, I’ve started the difficult conversation with Dad that home might not be an option when we hit that decision point. And I’ve started the application for the rehab center’s long-term care wing, and started doing all the work to get his finances in order for a possible Medicaid spend-down. Even without all my background anxiety, this would be an almost overwhelming process.

I’ve been keeping Dad aware of what I’m doing, but he seems to think that, if he just works hard enough in his therapy and with the nurse who’s dealing with his colostomy bag, he’ll be just fine at home. While I don’t say anything to discourage him, inside I’m wondering how on earth I’d be able to keep my business – much less a personal life – afloat, with him back in my house. For readers who don’t know this, I work out of my home – the key verb in this sentence being “work.” Running up and down the stairs multiple times a day to deal with blood-sugar testing, toxic-waste clean-ups and general checking-in would destroy whatever concentration I’m able to maintain, given the TV hum that’s become a constant presence in the nearly 4 years he’s been living with me.

So, this is what is keeping me up at night and wrapped up in knots during the day: At some point in the next couple of weeks, in a basement conference room, I’m going to have to sit facing a panel of rehab-center professionals and tell them that – despite whatever conclusions they may have come to, and assured Dad of – that I just can’t bring the elderly father sitting beside me back home again.


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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 – – 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.

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Up until a year or so ago, I always thought the word “disease” meant an illness with a name attached, like chicken pox or Lyme disease or HIV, not some chronic state of a bodily organ or system. Since Dad’s health has started to decline, however, I’ve discovered I’ve lived with a mistaken definition for this term that now plays such a major role in my daily conversations. As Dad’s begun collecting specialists like a 12-year-old boy collects baseball cards, we’ve learned that Dad is, basically, a basket of diseases on two legs (which are, themselves, diseased). Moving from the top, down, he’s got lung disease, heart disease, kidney disease, diabetes and peripheral artery disease.

To better understand these varying conditions, I turned to the same resource from which I get most of my medical information – the Internet – this time calling up the website The clearest of the six definitions that learned site presents reads as follows:

A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.

So, a disease is really a condition, which can be brought about by any number of causes. This definition makes perfect sense when I think about all Dad’s diseases – we don’t necessarily know how he got them, we only know they’re there.

Even more illuminating, in a metaphysical sense, is the word’s derivation. It comes, via Middle English, from Old French, combining “des” – or, “without” (o.k., I always thought “sans” was French for “without,” but I guess it was different in the old days), and “aise,” meaning “ease.” So, to live with a disease is to live without ease.

Truer words hath ne’er been spoken.

The last few days have certainly been lived without ease. Dad started back on a circulation medicine intended to help his peripheral artery disease Sunday night. He’d been off it for almost a year, because the doc had thought he had congestive heart failure and that particular medication can cause clots when congestive heart failure is present. Recent tests have shown that those crackly lung noises are actually the result of pulmonary fibrosis, so the circulation medicine is o.k. again. Well, a day or so after he started taking the medication he began complaining of a headache. Then the telemedicine nurse called to say his blood-pressure readings were coming back low – I checked and saw that morning’s reading was down to 78/38. Yikes! So, off to the doctor’s we went and off came that medicine from Dad’s prescription list. That afternoon I checked the circulation medicine online and found its effects were intensified if the patient also happened to be taking opremazole – aka Prilosec. Perhaps that evaded the attention of both the doctor and the pharmacist because it’s an over-the-counter medicine, but it was a scary oversight. Two days later, he’s still getting over the headaches.

These dis-eased days seem to be happening more frequently, filled as so many of them are with talk of – or treatment for – disease. And they’re beginning to take their toll on my normally optimistic Pop. Few in this world have lived their life as easily as my father, not because we were well off, but because he simply ignored unpleasantness. But this unpleasantness can’t be ignored,  and it’s just tough sometimes being the one standing by as he learns how to live without ease in the days that should be his easiest.

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The phrase, “death by a thousand cuts” has been running through my mind lately, as I’ve been with Dad to multiple doctors’ appointments over the last couple weeks. Except, I’ve amended it for his situation to “death by a thousand specialists,” as each doctor we’ve seen seems to be delivering their own specific bad news.

Yesterday was a double-header, with a visit to the podiatrist and Dad’s new cardiologist. The podiatrist discovered a rather nasty ulcer on the tip of Dad’s big toe – if that’s not taken care of, infection could get down to the toe bone, which would require a rather large cut, I’m assuming, to remove said toe (see “It’s Ba-a-a-a-aack“). Now, as a result, I’m back to the hated toe-dressing routine on a twice-daily basis.

Then, with a break for lunch, it was onto the new cardiologist, to get his take on the echocardiogram taken a couple of weeks ago, along with a chest x-ray taken last week. On the positive side, congestive heart failure doesn’t seem to be a current concern. On the negative side, though, there’s sign of scarring in his lungs, called pulmonary fibrosis, which is a likely cause of his shortness of breath. Additionally, he has what’s called pulmonary hypertension, which means the side of his heart that pumps blood to the lungs has to work harder because of that scarring, and so has become enlarged. At least, I think that’s what I’ve been able to put together from what the cardiologist told us and what I found on Dr. Internet. So now, Dad’s scheduled for a procedure with the ominous name of “nuclear stress test” or, more commonly, a chemical stress test. I guess this will give the doctors more information about just how crappy Dad’s heart really is.

And, once this test is done, he’s likely to be referred to a lung specialist, which will, in all probability, lead to more tests.

I’ve written about this before (see “Decisions, Decisions“), but I’m just beginning to question the “why” behind all these specialists and tests. He’s 87. He has a hard time breathing. One of the treatments Dr. Internet suggests for pulmonary fibrosis – the scarred lungs – is a lung transplant. Do we really need tests to determine if an 87-year-old man, with compromised kidneys and heart disease, needs a lung transplant? Can’t we just get him one of those little oxygen tanks in a snazzy, nylon carrier and be done with it?

Instead, this system is geared to provide care at a level that seems to suggest an 87-year-old man with scarred lungs, an aging heart and failing kidneys could stay alive forever. Now, yes, we could simply say “no” to the tests and specialists – and, frankly, if the cardiologist suggests a consult with a lung specialist, I’m going to want some more information on the “why” behind that referral before we make the call for an appointment. But, still, there’s an urge to know and treat that is very difficult to resist, and the decision trees that sprout from each new test result often have at least one or two branches that leaf out with hopeful – or, at least, palliative – treatments at their very tips. And it’s only human nature to reach out to those hopeful, if not terribly weight-bearing, branchlets.

But I’m also beginning to see, not the end of the beginning, but, more probably, the beginning of the end. And, more sadly, I’m beginning to feel like Dad is having a similar vision. And it’s very difficult seeing that these tests, which, in a hopeful mind, lead to new opportunities, also, in a more realistic/less-hopeful mind also seem to place Dad in their cross-hairs. This is another reason why I question the need for yet another specialist – 999 cuts may have no less an effect than 1,000 to the outside observer, but, to the victim in question, there still may be a blessing in that one less violation of his mortal flesh.

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I thought I’d been able to put Dad’s big toe behind me, but it appears to be wiggling its ugly, infected self back in my face again. This morning’s doctor’s visit was to the podiatrist, to check on the progress of the wound that accompanied him home from the hospital and the overall fit of the diabetic shoes he got a couple weeks ago. The good news is that the old wound is completely healed. The bad news is he now has a new one, on the very tip of the same toe, and it’s significantly nastier looking than anything I had to deal with before.

I have done my very best to avoid Dad’s feet for the last 3-4 weeks, since the podiatrist said I no longer had to dress the original location – what had been a 3-times-a-day task. Truly, the feet of an 87-year-old could make even the most ardent slasher-movie fan squeamish, so I took my reprieve from toe duty as a blessing and left Dad to manage his 10 little piggies on his own.

This, it appears, has been a mistake. The wound – an ulcer, in medical terms – has become somewhat deep. Maybe it was caused by the toe rubbing against the new shoes, or maybe it’s just one of those things that show up in a weak spot in the skin of a diabetic. But since Dad doesn’t necessarily change his socks every day (in a life filled with caregiving battles, you pick and choose, and sock changing hasn’t been at the top of my list lately) it’s bled a little and deepened. If the situation isn’t reversed, it could get down to the toe bone, which could lead to major problems.

So the dressing-change routine has returned as a part of my life – twice a day, this time.  Pull off the sock, peel off the old dressing, a spritz of wound cleanser, a dab of antibiotic cream and a covering wrap of gauze and tape – then, a deep breath while I wait for the next shoe to drop.

It’s very interesting being in this caregiving position as the health care debate rages on. One of the big issues in these conversations has been the concept of “rationing” – opponents of reform fear some sort of “death panel” will be making decisions about who does or does not receive treatment, based on some arbitrary criteria of worth to society. Proponents, on the other hand, talk about the irrationality of current treatment protocols, which can end up providing mammograms to 86-year-old female Alzheimer’s patients. Neither side seems to look at the other, instead preferring to stare directly into whatever television camera may be looking their way.
Like most folks I come at the issue with a bias. I’m a self-employed, liberal-leaning Democrat who sees the current health care system as ready for the scrap heap. Anyone who doesn’t think rationing already occurs certainly hasn’t been responsible for their own health care coverage – the current system simply rations care to those who can afford to purchase it. As a healthy 50-year-old, I’m paying more than $400 per month for insurance right now (and I have to have insurance because, like the plans likely to come up for final votes, Massachusetts mandates individual coverage). That gets me a policy with a $2,000 deductible – translation: the first two grand in expenses come out of my pocket, aside from an annual physical – and, once that deductible is met, I still have to pay 20 percent of every bill until my total out-of-pocket expenses hit $4,000. So, add my $4,800-plus annual premium bill to the $2,000 deductible, and I’m out almost $7,000 before the insurance begins to kick in, and almost $11,000 before it’s paying all the bills.
Of course, there are some benefits before I reach the deductible max. A big one is that the doctors and drug stores can only charge me at the rates the insurance company has negotiated with them. Last fall, I came down with Lyme disease (kind of a rite of passage on Cape Cod), and the nearly $700 in tests cost me only $139. But anyone who thinks a freelance writer with an extremely variable income isn’t going to think two or three times before making a doctor’s appointment – even a necessary one – isn’t doing a very good job of looking at life through another’s window. Reform opponents call mine an example of the power of patient choice to limit health care spending. Call it what you want, but I call it rationing.
[/end personal rant]


So, what does all this have to do with my father? Well, I’ve been pretty closely involved with his health care since his six-way bypass (yes, even his bypasses had bypasses) in 2004. And, since he moved out here in March 2008, I’ve been with him to pretty much every doctor appointment he’s had. The number of those appointments has snowballed over the last 6 months, as his kidneys have begun going seriously downhill, his congestive heart failure has begun getting worse and his diabetes has turned foot care from vanity into necessity. In the past three months, he’s had x-rays from head to toe – literally. They photographed his head to check for sinus blockages (they also confirmed the existence of a brain – I’ve questioned this from time to time, so the result was reassuring), his chest to check for fluid build-up and pneumonia and his feet to make sure a toe infection hadn’t gotten to the toe bone. He’s also had an ultrasound of his heart (aka, and echocardiogram) and more blood tests than I can count. All of this for less than $200 per month – what Medicare takes out of his Social Security check, along with the $100 he pays for his Advantage HMO program.

I’ve also taken over managing his prescriptions, which have multiplied as his specialist count has grown. I now have a two-page spreadsheet to consult during my weekly exercise of filling his pillbox. Two different blood-pressure medicines, a diuretic, a prostate shrinker, a pee-encourager, a cholesterol-reducer, a sleep enhancer, a blood-sugar reducer and a fistful of vitamin supplements. All this for an 87-year-old man who refuses to cut back on his drinking, orders veal parmigiana and pie a la mode for lunch when he gets the chance, and refuses to recognize the connection between what he puts in his body and how he feels the next day.

Now, believe me, I don’t begrudge my father his pleasures at his age – good Scotch and the Golf Channel, along with a periodic poker success, are among the very few he has left. But one of the biggest contributors to Medicare’s pending financial distress is that something like 80 percent of a person’s lifetime medical bill is often spent in the last couple years of life. I’m seeing this phenomenon play out right in front of my eyes. Tests lead to other tests, which then lead to more prescriptions. Crises lead to hospitalization, and then to weeks of rehab, before the patient returns home, rarely regaining his or her former functionality.

It’s easy to see how this happens, having been in the middle of it all. Yes, the current fee-for-service payment approach can potentially encourage overly aggressive care. But, beyond that, doctors really are human beings – I’ve certainly recognized the humanity in most of the medical pros who’ve treated Dad. They want to see their patients get better, they want their patients’ families to feel hope and, I think maybe just a little bit, they may want to solve a puzzle.

So, an 87-year-old’s cholesterol starts climbing? Throw a statin into the mix. Hearing a little more fluid in his lungs? Send him in for an echocardiogram. Blood sugar’s getting higher, and you know he won’t change his eating or drinking habits – get him diabetes medication. Oh, and if his urine flow is slowing, how about a drug that may help shrink his prostate over several years.

Yes, that’s right, prostate-shrinking medication for an 87-year-old man who shows no signs of prostate cancer.

Now, I’m not arguing for an elders-onto-iceflows approach. If a treatment or medication helps make a person’s current quality of life better, it makes sense to me. Dad’s Flomax means he often gets six straight hours of sleep before he has to hit the bathroom, where he’s lucky to get two hours’ sleep without it – plus, fewer times in and out of bed means fewer opportunities for falling. But medication that may or may not have an impact on a condition that may or may not happen five years from now, in an 87-year-old man with heart disease, kidney disease and diabetes? That raises questions, to me.

So, I have two different views of the current health-care system visible from my own home right now. Neither of these presents a rational picture, with too little care available to some (well, me) and, arguably, too much being given to others (Dad). All of which makes me think, maybe it’s time to take a step back from conversations about the rationing that’s already going on and see if we can talk about rationality, instead.