January 2010


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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 – 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.

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Dad’s been at the rehab center for five days, and I’m feeling like both a middle-aged empty-nester and a teenager turned loose on the house when the parental units have gone out of town. I find myself at loose ends, without either the constant TV chatter or regular meal-and-toe-wound schedule to force me into concentration and organize my day. And, oddly, the trouble I had sleeping the last couple weeks before Dad’s hospitalization has continued – I figured that once he was on someone else’s watch, I’d be able to relax. Annoyingly, though, I’m still waking up at 4 or 4:30 a.m., now to only the simple humming of the dehumidifier, and then tossing and turning until 7.

The one regular anchor to my schedule now is my daily visit to Dad. It’s easy to see, during those trips, the contrast between his current state and attitude and that of his previous rehab stay five months ago. Back in August, he was raring to go – talking about release dates the day after his transfer from the hospital. Yesterday, exactly a week before his 88th birthday, he already was resigned to the notion that his celebratory dinner would be eaten off a foodservice tray. During today’s noontime visit, he was finishing up lunch while still lying in bed. The enthusiasm his voice carried in his previous stay has been replaced by something more like resignation or, possibly, depression – I can’t say that for certain, though, because I’ve never, in my life, heard him depressed, so I have no point of comparison to make a definitive judgment.

Back at home, I’m sussing out my own unfamiliar emotions. That constant TV chatter was driving me nuts just a week ago. How I loved it when Dad would switch from the hyper-kinetic ESPN and CNN hosts to the calmly spoken observations of the golf or tennis channel (I’ve decided that golf and tennis color commentary is like the light-jazz of sports talk). Now, though, it seems my internal conversations have taken the place of all those droning talking heads, making it almost as hard to concentrate as it was before his hospitalization.

There’s no telling right now how long Dad will remain in rehab. August’s stay lasted a little more than two weeks. This was followed by six weeks or so of visiting nurse services, before he rejoined the herd of octogenarians plying Cape Cod roads in their late-model Mercuries – and, so, became ineligible for the home-based care. Now I’m beginning to wonder if home care will become a more permanent part of my life with father – or whether we might even have to begin exploring other living arrangements. If he doesn’t get up and moving soon, the use-it-or-lose-it factor so important to elder mobility could well kick in, and I don’t see how I make a bed-bound Dad work in the little house that’s home to both my business and my life.

In the meantime, I’m moving some things back to where they were before he arrived, and attempting to re-acclimate my body to a less-than-subtropical thermostat setting. My dinner hour is shifting later, and, if I make it to the gym, I’m not so worried about rushing home in time to get a meal on the table by 7:15 p.m. In short, I’m trying shape my life into something that might resemble what it would look like if the kid who is my father has left the nest for good. This may well only be a trial run, but I’m feeling like the practice may help make it easier once my nest really is empty once again.

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It was either late 1978 or early 1979 that I first discovered the genius of Joni Mitchell’s “Hejira.” I can still feel the hard linoleum under the dorm-room throw rug I was lying on. My roommate, Mike, was out, and I had control of his amazing stereo. With his big, puffy headphones covering my ears and an illegal, cigarette-paper-wrapped burning taper by my side (gimme a break, it was 1979), I laid back on an oversized Marimekko-covered floor pillow and let those amazing metaphors wrap around me, laid down with lush, bluesy guitar riffs, courtesy of Jaco Pastorious. I had found a muse and a touchpoint that I’ve turned back to time and time again for more than 30 years.

I had just realized a soulmate in Joni the previous year, through the extremely accessible “Court and Spark.” I expanded from there to “Blue” and “The Hissing of Summer Lawns.” But “Hejira” touched something deep in me. The title draws on an Arabic word meaning “journey,” and the entire album is about travel and movement, both physical and emotional. I can pretty much sing through the entire album by heart, now – “no regrets, coyote, you just picked up a hitcher, a prisoner, of the fine white lines of the highway”… “each so deep and superficial between the forceps and the stone”… “a thunderhead of judgment was gathering in my gaze”… “white flags of winter chimneys wave truce against the moon, in the mirror of a modern bank, from the window of a hotel room.” She was 30 years old when she wrote those lines. 30 years old.

Tonight, to tame my spinning mind, I’ve got that CD (yeah, I’m old school) spinning yet again. I’ve got a small house, and the stereo is in the living room, so when Dad’s here it’s hard for me to have music playing. Thirty-one years after that first listen, I’m now sitting on a comfortable sofa with a glowing fire going in the woodstove, and it’s a glass of red wine – not a joint (we call this progress?) – keeping me company, but I still find myself calling out, “I’m like a black crow flying in a blue sky” to that song’s driving rhythm, as though I were, yet again, a stoned 19-year-old just discovering the power of words to draw a picture.

It was an old spirit that created that album, but listening to it now gives me a sense memory – peeling back cellophane, slipping out the paper-covered vinyl and being careful to avoid fingerprints, dropping the disc onto the turntable (maybe with a quick pass of the Discwasher brush – remember those?). Then turning up the volume – and down the lights – to let the music take over. Thank you, Joni, for creating a work that has both helped me through many journeys, and helped me remember the journeys that brought me to where I am now.

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Well, Dad has been suggesting for the last six months or so that I do my best to never get old. My typical response is to joke back that I’m not so sure I’d enjoy the alternative. Lately, watching him seesaw between almost and never recovering, I’m beginning to reconsider that response.

He got transfered from the hospital to the rehab facility two days ago. He was in this same center for a couple weeks back in August, and I was impressed with the place back then. In the last couple days, several of the staff have recognized one or the other of us, and Dad seemed to be settling in just fine yesterday, his first full day. He got dressed for the first time almost a week, and even had his first, short occupational-therapy session, walking with the therapist from his bed to the doorway and back, using a walker, but no hands-on assistance. He also talked a couple times with one of my sisters, goading her on about her losing NFL-playoff picks – and trying to convince her they actually had a $50 bet on the games.

Today, it’s a different story. I paid a noontime visit and found Dad to be pretty much a mess. It’s hard to be much more specific than that. He has a nosebleed that began back in the hospital that seemed to be healing, but opened up again at 4 a.m. He may have to go to the ER to get it cauterized. His blood sugar is see-sawing, and his toe wound is hurting him again. Getting dressed is out of the picture – he was going back to sleep when I left him at 12:30, and it was almost painful watching him pick through his lunch.

On top of it, I’m having to keep up with the nursing he’s getting – it’s a good facility, but some things just didn’t get communicated from the hospital, like that his toe dressing needs to be changed 2x/day (not once), with a prescription-strength ointment, not just Bacitracin. And, I just found out that they’d admitted him under the wrong doctor’s care, so his own doc didn’t even know where he was. The staff was very responsive after I pointed these things out – and both may well have been the result of information getting garbled in the transfer. And, in the end, Dad’s own will is probably more important than the dressing on his toe or who’s reading his chart.

Although Dad bounced back strongly during his August stay, he’s in much weaker shape now. Plus, last time it was an infection causing the problems, and those problems resolved themselves once the infection was knocked out. This time, it’s his own body that’s not working. I’m beginning to have a not-great feeling about how this may turn out. I’ve stopped praying for recovery, and now am just praying for whatever is the best outcome to happen soon. I ran into his doctor at church yesterday (yes, it’s that small a town), and he said that how Dad does this next week could be an important indicator as to how far he recovers overall.

Dad’s 88th birthday is a week from today, and I’m beginning to see it almost as an omen, rather than a cause for celebration. How many times have we all heard stories of older folks passing on, just after an anticipated birthday has been reached. Up until now, I’ve seen this as relaxing after a final goal has been met, but I’m starting to rethink this interpretation as I’m watching Dad get weaker and weaker. Instead of indulging in a well-deserved rest after a significant accomplishment, I’m beginning to wonder if these folks are, instead, realizing the next such milestone is an unimaginable year away. Like a climber who can’t quite make it to Everest’s peak, but, instead, is forced to turn back at the last base camp, they hit their own personal limit, beyond which further progress is impossible.

Which brings me back to Dad’s never-get-old advice. The problem I have with with the old codger’s directive lies in the fact that we don’t know when we’ll get old until we get there, and discover what old really means in our own way of life. None of us can predict where our own limit lies until we turn a corner one day and find it staring us in the face. Today I saw in Dad’s eyes the reflection of a signpost that seemed to say his destination is drawing close, and I just have to wait and see which exit he decides to take.

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For about four hours today, I felt like I had my brain back again. I woke early – around 4:30 a.m. – and couldn’t get more than 45 minutes or an hour of sleep at a time after that, without waking up again for 15 minutes or half an hour. I gave up around 8, took the dogs for a walk and then headed to the hospital. All the time, I felt like I was functioning on some sort of auto-pilot that featured a 1970s-era feedback mechanism – my brain just felt like it was buzzing back into my eardrums, like Peter Frampton on his vo-coder.

Then I got to Dad’s room in the hospital, and the buzzing cleared. Dad was sitting up in his chair – sure, he was in a hospital gown with ties up the side, but he was sitting up straight, much more with it than he’d been at 3 p.m. the day before, and he was bitching about the coffee. This was Dad, again.

I pulled my laptop out of my backpack and plugged myself in. As Fox News aired its images of Haiti’s earthquake devastation in the background, I actually was able to get work done for the first time in four days. The hospital has great WiFi, and I didn’t feel like I needed to be watching Dad’s every cheek twitch. I could breathe again. In… Out… In… Out… In… Out… I told him a joke I had grazed off of Facebook (So, did you hear they picked up the Ever-ready Bunny? … They charged him with battery ). He absolutely roared.

But, still, he had a chronic nosebleed the entire time. The nurses were convinced it was the oxygen tubes, and they added a little humidifier cartridge to the oxygen output. He started nodding a bit during lunch – but, you know, they had woken him up at 3:45 a.m., and he said he really didn’t get much sleep after that, until he got up around 8 a.m. They wheeled him off for an E.E.G. around 2, to ensure that yesterday’s incident hadn’t been a seizure, and I headed home.

I found I actually was able to do work at home, at least for an hour, until my lack of sleep over the last few days forced me to close the laptop, close my eyes and just give up cares for awhile. “He’s going to rehab tomorrow,” I thought. “I know how this works – he’ll be home in a week or two, as big a pain in the ass as ever.” In the meantime, I could enjoy the house as though it were mine, alone, again, but knowing that he was in good hands.

I called the nursing station at 6 p.m., before the afternoon nurse clocked out, and she said all was fine. But when I called Dad’s room, I began to grow concerned. That slurry speech was back, along with a certain delay in response.

“How are you feeling?” I asked. “You’re sounding a little off.”

“Well, I guess I’m feeling a little confused.”

“Confused? What does that mean to you?”

A pause.

“I guess I’m feeling depressed about Hait-eye.”

My father has not been depressed more than an hour and twenty-three minutes at a time in his entire life, even after three failed marriages, countless unpaid bills and the previous decade’s-worth of health problems.

I suggested he change the channel. After all, since he had control of the remote, why not indulge in an hour of Two and a Half Men – I always insisted on the news in that time slot. He chuckled – “yeah, that’s what I did last night.”

We signed off, and I sipped my gimlet with a certain echoing buzz at the back of my neck. “Deep breaths,” I said to myself. “Deep breaths.”

Two hours later the phone rings. It’s Dad. It seems like he doesn’t remember he’d only just talked to me at 6. After a minute or so, I told him I was calling the nurse. When I checked in with her – she’d just taken over from the afternoon on-duty and didn’t know Dad – she said she’d just been in and he’d been fine. He’d just said he was feeling a bit discouraged.

Outtake: Hospital personnel determine a patient’s cogency with the same four questions: What’s your name? Do you know where you are? Do you know what day it is? Can you tell me the year? If you nail those four questions, it’s like getting straight A’s. Those four questions, however, show no sensitivity to individual characteristics. My father sold custom manufacturing equipment for 40 years, through at least 3 recessions. At age 78 or so, he got a job selling suits at the local mall’s JC Penney. If all is right with the world, this inveterate flirt would never tell a woman he’s just met that he’s feeling discouraged. He could have his right foot caught in a lawn mower and his hair on fire, and he’d turn the question right around: “So how are you feeling, you pretty thing?” he’d say. If he’s telling a complete stranger – a female stranger, no less – that he was feeling discouraged, something had to be up. And I told the nurse so.

To her credit, the nurse responded. She promised to get the blood pressure and sugar checked, and to pass my concerns on to the nurse who’d be relieving her in the morning. And I’m sure he’ll be well cared-for in the hospital. My big fear relates to tomorrow: the plan is for him to be transported to a non-medical, physical-rehab facility. I just dread him getting there, and then have to be transported back to the hospital 5 hours later, because his blood pressure’s dropped without the aid of bolstering fluids.

All the sudden, the decent night’s sleep I’d been looking forward to this afternoon – after five or six night’s of restless, half-awake dozing – seemed to vanish in the mist. I’ve got a major assignment I’ll already have to work through the weekend to finish, even without trips to the hospital and/or rehab facility. To say I’m working on my last nerve is to over-state that final surviving synapsis’s resilience. It’s only been since Wednesday – two days ago – that he’s been in the hospital, but the downward spiral began almost two weeks ago, and the brain I’d just begun to feel comfortable with, again, is beginning to both shut down and send off fireworks, at the same time.

It ain’t over, ’til it’s over, a famous Yankees player once said. And, for better or worse, it ain’t over yet.

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One lesson I’ve learned in going through this caregiving experience is the importance of trusting one’s gut. I’m guessing new parents must also go through this learning process. It comes from getting to know someone so well that you can intuit when something’s just a little off, combined with the knowledge that you are the one who will have to take action should anything go amiss.

My gut was proved right just this morning. For the last few days, Dad has been acting steadily less like himself. Yesterday we went to his primary care doc’s walk-in clinic when I noticed his speech going slightly off. I kind of thought they’d be sending us right to the hospital – I didn’t want to be the one to force Dad down that route, yet again, on my own. Instead, though, after a once-over for stroke symptoms, they sent us to the blood lab for blood tests and set an appointment for today to get an ultrasound of his carotid artery. Dad and I both were relieved they didn’t think the situation warranted an ER visit, and we went on our way.

Last night, though, my gut was sending out warning signals once again. His appetite was way down and he announced he was headed to bed as soon as he pushed back from the dinner table. I’ll admit that it was kind of nice to have the living room tv to myself for the evening, but I knew it wasn’t for a good reason. “We’ll find out more tomorrow,” I said to my churning gut. “Keep calm, give the doctors time to figure it out.”

I woke up at about 4:30, and couldn’t get back to sleep. I felt I could almost hear the little neuronal circuits going off in my head, like little tindersparks in a brush fire, and every time I quashed one with my attempts at deep breathing and relaxation, another would pop up a few brain folds over. I was about ready to give up and get up at 5:45, when I heard what I thought was a call for help from downstairs.

As I got to the bottom of the stairs, there was a second call. I got to his room and asked what he needed – “I gotta go to the bathroom.”

“O.k,” I said. “You need help with that?”

“Where’s the nurse? She just walked down the hall.”

“Dad, you’re at home. Do you know where you are?”

“Yeah, I’m at home. Wait, I’m still hooked up to the machines, I need to get unhooked.”

“Dad you’re in your bed. You’re not in the hospital.”

Crap.

Into the bathroom he went. To the sofa with my head in my hands I went. On his way back to his bedroom – literally a 120-degree turn and two steps from the bathroom door – he asked where all his stuff was.

Double crap. Damn that darned gut anyway.

Now we’re back in my least-favorite place – ER purgatory waiting for a bed. And my gut is telling me this time is worse than last time. His kidney numbers are through the basement and the ER doc didn’t give me anything on which to hang higher hopes.

This gut check is giving me a kick to the gut

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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 dictionary.com. 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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