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Thursday, February 28, 2013


"Too long a sacrifice
Can make a stone of the heart."
William Butler Yeats, "Easter, 1916"

God preserve me from such a fate, though I fear I am irrevocably on that path: The inappropriate laughter that wells up when I should feel pity, compassion and respect. The dry eyes when I should be wailing. The normal heart rate when adrenaline should be coursing through my veins. The stolid efficiency that everyone relies upon. The iciness that is beginning to creep into my psyche. The dogged perseverance and unwillingness to let go of the reins. But worst of all, the impatience and contempt that are leaking into my rebel heart; the fallout of a deeply entrenched war.

To surrender, to be defeated, might bring an abrupt end to the war. To stand firm, the challenges will worsen, the psychic casualties will mount. But I refuse to succumb. Falling to my knees is not an option. Coldness must be embraced as a means of survival.

"And what if excess of love

Bewildered them till they died?"

*Fritz Baumann, "Kriegsverletzter (War Veteran)" 1916

Friday, February 22, 2013

Just Another Friday (Parkinson's Crisis, Part 2)

She leaned her forehead against his, "Michael, Michael, I have to call an ambulance. I don't know what else to do."

She had found him on the floor between the couch and the coffee table, stretched out on his belly. She wasn't alarmed. He spends a lot of time down there these days. He usually seemed to be absorbed in the intricate patterns on some of the carpets. Sometimes he just fell asleep. When she wrapped up her telephone conversation with her friend she went into the living room to check on him before preparing supper. She hadn't seen him go to the floor but only minutes before she could see his head doing its characteristic dyskinesic bobbing and swaying while he watched TV, and, clearly, from his position on the floor he hadn't fallen, merely slid down for a nap. Or so it seemed.

She called his name; his eyes were open but not moving. He didn't respond. Repeatedly she called to him. No response, not even an attempt to make eye contact. When she tried to help him up into a sitting position, he was a dead weight. He couldn't move and yet he was breathing normally.

What the hell??

She continued to call his name, ask him questions, urge him to move. Nothing. She shoved the couch and coffee table back so she could manoeuvre him somehow. Rolling him onto his back worked; then she was able to get his knees up and haul him into a semi-sitting position, allowing her to pivot him on his bottom so that his back was to the couch but too far away to be propped against it. With careful wedging of pillows to prevent him falling back to the floor, she rushed around behind the couch to shove it back into position where she could lean him safely.

Now that he was up, she had to assess his cognitive functioning. "Michael, what's my name? Are you in any pain? Can you look at me? Can you squeeze my hand?" His eyes were blank, unmoving. His mouth was flapping in an odd fish-like manner, open and shut, open and shut. No sound could he utter. No eye contact. No hand squeezing. She ran into his room to grab the blood pressure monitor. Normal.

Was this a Parkinson's crisis? She'd seen near catatonia before but rarely this severe. Usually it was provoked by a trauma like a hospital visit or a dental procedure, never just out of the blue like this.

She grabbed the portable phone to call her neighbour, a nurse. No answer. She tried the doctor's office knowing it was late and probably closed. No luck. Then her son called, just checking in as he often does on his way home from work in a distant city. Relief flooded through her as she told him of the predicament but she hung up nearly immediately to call the after-hours number for home-care patients. He calmly promised to call back in a few minutes.

The patient, unruffled nurse at the other end of the phone, hearing her tale, stated very clearly that she had to call an ambulance. "There's nothing anyone can do for your husband at home. He must go. Will you call 911 as soon as you hang up?"

Yes, she promised, dread gripping her heart. Here we go. She took a deep breath preparing herself for the catastrophe that was about to unfold. In his fragile state this could well be the end. A terrified final few hours in that hated hospital. Heavy narcotics to quell the mania. Uniformed guards to protect the staff from her crazed husband. Straitjackets. Agony.

One last effort to bring him round before she made that call from which there was no return, her head resting against his, "Michael, Michael, I have to call an ambulance. I don't know what else to do. I love you. Please come back now. Don't let it end this way. Please."

His leg moved. His eyes flickered.

"Michael, look at me." His eyes moved tentatively to focus on her face.

"Michael, what's my name?" He whispered her name.

"Can you grip my hand?" A slight squeeze.

"Are you in any pain?" An almost imperceptible shake of the head.

She sat back on her heels and heaved a heavy sigh. She knew the spell might not have passed fully and she had to be very vigilant. She helped him up onto the couch, got him settled comfortably, then curled up next to him, head on his shoulder. With every passing second he became more alert, his eyes darting around the room, his quirky Parkinson's facial contortions returning, his tongue doing that weird shooting out of his mouth like a lizard, all of it a joyously welcome sight. 

When he was fully recovered a few minutes later, she asked him if he could explain what those frightening fifteen minutes (or was it longer?) had been about. He could offer no explanation, of course, but in his strange, garbled way, he said he could hear her through it all, that he had decided not to respond to her entreaties, and then he went on some ramble that made no sense at all. 

It was music to her ears.

"A Prayer for those at Sea," Frederick Daniel Hardy, 1879

Wednesday, February 13, 2013

Further Down the Rabbit Hole

"No, I didn't," was the hot denial from a man who cannot remember five minutes ago. I had to assume then that the television remote control had made its way into a sink-full of water at the hands of an intruder or the dogs. As it was a quiet day with no visitors, I highly doubted the former; as my dogs are intelligent canines but do lack the skills to plan such mischief, I ruled them out too. No, it was another of Michael's odd little escapades that I'm sure made perfect sense to him in the moment.

I've learned there is no point trying to find reason in his bouts of madness, nor is there anything gained in reprimanding him or suggesting he not do that again. He will simply forget. Unlike a small child who will eventually remember and learn appropriate behaviour, Michael's mind no longer has the capacity to learn, though he sometimes seems to possess that childlike curiosity that simply cannot resist finding out what might happen if you plunk the remote control into a basin of water.

Lately Michael's dementia has escalated to the point that he can no longer hide it in front of others most of the time. Until recently he could, as do many who are stricken with senility, rise to the challenge of putting on a fairly normal face in front of visitors, reserving the real Michael for me alone. I used to feel that some folks doubted my reports of his extreme behaviour simply because they never saw it, especially those who only saw him occasionally. As recently as last summer I would feel an odd mixture of extreme frustration and delight when I would take him up to the soccer field to socialize with his old buddies. He would be the old Michael, back-slapping and running to retrieve the soccer ball, then slump the moment I got him back into the car; overcome with exhaustion, he would shut down completely. Some of these same men have recently helped me out by spending a couple of hours with Michael to allow me some time off. The look of alarm on their faces upon my return as they reported his bizarre behaviour was strangely satisfying. Ah, at last you are seeing what I see every day.

But his behaviour around me has worsened too, leaving me nervous to take my eyes off him for more than a short while. A few days ago, as he rolled up the living room carpet, he explained incoherently something about the Civil War, soldiers and how he had been killed. Another time, again down on the floor with a carpet, he was apparently looking for a flashlight. Then there was the moment, with wallet in hand, he announced he needed to find his way home. He knew neither me nor who his children are. Indeed, like poor Alice confronting the Caterpillar, he couldn't even identify himself.

A recent conversation with the doctor about what course to take if no infection is found in a urine sample, taken after I discovered clumps of blood, brought us to a new understanding, at least for the doctor. When he asked me if the normal protocol of scans, cystoscopies, and whatever else might be needed to get to the bottom of a possible urinary problem could be followed, I told him I could never see Michael tolerating anything beyond mild procedures that could be performed at home where even collecting a urine sample is now very difficult. I asserted that my concern is to ensure not only his physical wellbeing but also, more importantly, his equanimity. We've had this conversation before even though I have a document stating minimal intervention in the event of a catastrophic episode. The doctor needs to confirm and reconfirm that we are on a purely palliative course now.

It is February, and cold and snowy outside. It is an isolating time, trapped indoors with insanity, but at least he is sleeping through many more hours of the day now, calm and quiet in bed or on the couch to balance out the more manic, delusional times. Television viewing, however, is now slightly more challenging as I wait to see if a dry remote control will still work.

*John Tenniel's illustration from Lewis Carroll's "Alice's Adventures in Wonderland", 1865.