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Thursday, August 26, 2010

At War

Michael is at war. Against whom or what I am not quite sure but it is a familiar war at least, albeit imaginary. It is filled with adversaries who shoot him, throw hand grenades, threaten to take him hostage. They are very real to him. Whenever he is in hospital he is like a jungle warrior trying to evade capture, constantly on the alert for danger, with the unsuspecting hospital staff becoming the manifestations of these evil-doers.

Michael's real war is being waged against him by his own body and mind. The apocalyptic scenarios he imagines are merely symbols for the physical hell he lives through every day with such grace and courage and without complaint. Perhaps this imaginary war he is engaged in is a necessary battle ground for him to work out his fear and hatred of this terrible, dare I say evil, disease. There was a chilling but effective ad on television recently, depicting a man with Parkinson's Disease attempting to cross his own living room. There in the room was his alter ego who, with every move the man tried to make, would shove him to the ground or violently push him against the wall, making the journey across the room a battle against himself and a near impossibility.

The latest battle in this war of his began suddenly last Sunday evening. I was finishing up preparations for my brother's birthday dinner, awaiting his and his wife's arrival at about six. Michael had had a fairly normal day though he was possibly more confused and weaker than usual. But these are variations in any day and not necessarily noteworthy. I had noticed though, and had brought it to his family doctor's attention, that over the past month he has been generally more confused, weaker, greyer looking, and, more disturbingly, often suffering from moments of what appeared to be light-headedness on rising with many more falls. The episodes of light-headedness, if that's what they were, were characterized by about a minute of freezing in place, glassy-eyed and absent, unable to communicate. They were naturally alarming but I put it down to orthostatic hypotension, that all too familiar feeling we all get from time to time when we stand up too quickly. At times of the day his blood pressure is at an unnaturally drug-induced low, explaining perhaps those odd moments. None of the above symptoms in themselves too alarming but the whole picture was causing me some concern.

Then nearly three weeks ago on a Saturday night he had the first of two attacks, the second more serious one occurring last Sunday. At about 9 pm that first night I noticed he was breathing rapidly, far more rapidly than he should. Shortness of breath is not an unusual symptom among advanced Parkinson's patients but it is usually after or during exertion and is short-lived. This episode was while he was at rest, bent over and engrossed in one of his many odd little projects, this time carefully wrapping and taping copper wire around a pencil. I was aware that the breathing hadn't slowed down for many minutes so encouraged him to give up his project and get ready for bed, thinking that it was just the intense concentration that was the cause. I got him into bed and started on our bedtime ritual of my reading aloud followed by prayers that I recite and he follows along as best he can. Things were different though. He continued to breathe rapidly through my reading and when we got to prayers he was unable to follow along because of the worsening shortness of breath. He was now into about 45 minutes of this and I was getting alarmed. I called a special number I have been given to contact a nurse who stayed on the line with me for nearly thirty minutes calmly asking pertinent questions like: "Is there chest pain?" No; "Is there nausea?" No; "What are his blood pressure and temperature?" Normal.

This nurse rang off promising to call back after she had consulted with the on-call nurse for the night and between them they had decided it was an anxiety attack. I had already thought of that and had long before administered more anti-anxiety medication but I wasn't convinced. I have seen Michael have more anxiety attacks than I care to count and this was different. Certainly one and a half hours into the crisis he was displaying anxiety but it only manifested later, long after the onset. And who wouldn't in such circumstances? I don't believe it was the cause of the breathing issue. Anyway, by the time the nurse called back, his breathing was starting to normalize. It was now very late at night and I gratefully left him to go to sleep on his own while I climbed into bed with the monitor next to my ear in case he had a recurrence. He had a peaceful night. I did not.

A few days later there was a different reason for another sleepless night. He went to bed normally and problem free but I became aware that as soon as he entered a deep sleep his breathing sounded like he was gargling all night. I was naturally on alert, vowing the next night to prop him up even more. Ragweed season had struck so maybe it was just his allergies.

It is at this point that my Loyal Reader is probably shocked at my lack of action. Let me say that a day doesn't go by when we don't have something that would warrant a trip to the hospital or at least a visit or call to a doctor. I realize that I have become somewhat blase and often wonder if I will ever recognize a real emergency again but as this story unfolds you will see that I am not completely desensitized to emergencies. You must remember that hospitals are bad places for Michael mentally. He immediately sinks into a hellish abyss of paranoia and delusions so it is with great caution that I take that route. I must be convinced that the problem is serious and cannot be handled at home. That is why I called the nurse so late at night instead of calling an ambulance that first night and as it happened, all was well. At least so I thought.

So now it is Sunday and at around five pm I noticed that his breathing is slightly more rapid. I got him seated in the living room, tried to distract him with television and kept an eye on him. By six when our guests arrived things had worsened. Despite my reluctance to believe the anxiety attack pronouncement by the telephone nurse, I gave Michael a dose of his Clonazepam that I have on hand for such attacks. We all sat in the living room and tried to converse naturally and comfortably but all the while Michael was labouring for breath. I served supper trying hard to keep things calm and peaceful but still no improvement. In fact things were now escalating terribly. He was gripping the sides of the table and shaking so hard that he was pulling the table apart, no easy task for one person. I gently asked him if he thought he needed to see a doctor and I think he said no, but minutes later I realized that things were getting out of control. I called 911. I described the problem, was asked a lot of the same questions the earlier nurse had posed and was assured that an ambulance was dispatched. It was now close to seven pm.

The next twenty minutes awaiting the arrival of the ambulance (we live in the country about a fifteen minute drive from the nearest hospital) were a nightmare. Michael was now sweating so I wheeled him out onto the front deck to cool down, close to the ramp that the paramedics would have to use. By now he was nearly convulsing, stretched rigid in his wheelchair, head thrown back, eyes rolling back, mouth wide open and tongue lolling, his face in a terrible grimace and his body shaking so violently that the chair was rocking back and forth despite the brakes being firmly secured. I go into an ultra-calm state in these episodes, my voice getting quieter and slower as the crisis mounts. My brother paced around but remained calm. My sister-in-law stayed inside with the five dogs present (two of ours, three of theirs). After a few minutes, Michael said he was going to vomit. I grabbed and emptied the dogs' outside water dish and gave it to him. He didn't vomit but I did call back to the emergency services to report the change as I had been instructed to do. The nice calm man assured me it wouldn't be long.

Five or more minutes elapsed. They should be here. Where are they? By now Michael was looking worse, if that was possible.

I called again. "Where the hell are they?"

"They are just getting off the highway now, ma'am. They'll be there in a couple of minutes." There it is, lights flashing, sirens blaring. Hurray! Wait a minute. There it goes zooming past the turn-off.

Back on the phone I get, "Patch me through to your drivers. They missed the exit. Oh no, here they come. Oh God NO, now they've missed our street."

My brother rushed to the end of our short road to flag them down as soon as they figured out their mistake and within a few seconds they were backing into our driveway. I yelled to them that Michael needed oxygen and in seconds they had him on the stretcher and hooked up to the oxygen tank, vital signs read, bronchodilator administered (they suspected asthma) and generally calmly taking control. Have I ever said how much I love paramedics? I don't think I have met a single one who hasn't impressed me with their kindness, professionalism and their ability to bring calm to a situation. And I've met a lot of them.

My brother and his wife offered to stay behind to clean up the kitchen and probably finish their meal which was so brutally interrupted. I drove off following the ambulance.

What followed was a flurry of activity at the hospital. More oxygen, more reading of vital signs and now the injection of a drug called Ativan (generic name Lorazepam), an anti-anxiety medication, because everyone was still operating under the assumption this was an anxiety attack, which, I suppose, it was in part by now. The drug had no effect and Michael's breathing didn't slow down and his oxygen levels were still very low. Next they injected another medication called Versed (aka Midazolam), an anticonvulsant/anti-anxiety drug and this one worked, thank God. His breathing slowed; his oxygen levels reached 100%; he relaxed and almost fell asleep. This peace lasted about half an hour and while he was still hooked up to the oxygen he suddenly had another attack. Once again the levels on the monitor plunged and he began to look wild. More Versed followed by more calm. But now he was obviously hallucinating, gently picking up invisible objects from the wall, from the nurse's shoulder, from my hair, but at least he wasn't displaying any anxiety. He looked rather like someone on a very peaceful happy high. But the medical staff decided to give him a pill (by now I was too exhausted to ask or even care what it was) to combat the visions, making this drug number four in less than an hour and a half. How this man continues to function at all with the ever increasing mixture of drugs in his system is beyond me.

The on-duty neurologist declared Michael needed his meds sorting out; that must be the problem. When have I heard that before?. That is always the pronouncement and it is never the answer. It may be part of the problem but there is a basic fact at play here: Michael MUST have most of these medications to survive and he has already been pared down to the basic minimum in Parkinson's drugs now leaving really no other recourse. If drugs are the problem we'll just have to live with it.

Finally Michael seemed calm and I decided to go home. It was now about ten thirty, I was tired and after the nightmare stay at the hospital a mere three weeks ago still seared in my brain, I realized I could not stay overnight again and remain sane. Besides, knowing that he needed constant replenishing of the calming drug and oxygen, I was oddly detached and comfortable about leaving him there. I returned home and slept very little despite being in my own bed, expecting a call in the night for any number of reasons. But all was mercifully quiet. I had already learned that Michael's own neurologist would be on duty in the morning so I resolved to be back at the hospital very early to catch at least one elusive doctor.

I was up very early the next morning to make sure the dogs were walked before what might be a long day on their own. I was back at the hospital by eight am hoping not to miss the neurologist. Barely half an hour after my arrival a tall lanky young man arrived in a security guard uniform, pulled up a chair (no such luxury for patients' visitors unfortunately) and in a rather embarrassed hushed voice announced he was there to "watch over" Michael. Clearly it had been a more eventful night than anyone was letting on so the hospital staff had taken the prudent step of hiring outside muscle in case my normally very gentle and peaceful husband turned violent again. Remember, Michael was at war. But at this point in the morning Michael was snoring happily, though a little too heavily for my liking. No matter. I'd enjoy the cease-fire as long as it lasted. Nobody had any words of wisdom to share with me on Michael's condition so everything still remained a mystery.

Michael slept until ten am when I finally roused him for his morning medication. In the meantime I had struck up a warm and friendly conversation with the very gentle and seemingly kind young security guard. This Rwandan refugee had lost his family in the genocide and was completing his Masters degree in Civil Engineering at a local university, paying his way with what seemed like very unsuitable work for him. He was about 6'2'' and maybe 125 lbs and admitted that his job could be very stressful at times. I learned a lot about him and was grateful for his presence because during the day when I needed to leave, I knew he would be there at Michael's side. Though his job was to be the tough guy, in reality he was a calming influence on Michael who would otherwise have seen this fellow's uniform as something of a threat, part of his elaborate conspiracy fantasy. So perhaps this fellow was well suited to his job after all, using gentleness rather than might to keep the peace. Remarkable when you consider what he must have been through in his youth. He admitted that General Romeo Dallaire was his hero. We exchanged phone numbers and he promised to keep me informed if Michael became agitated but in this young man's care Michael remained very calm. Unfortunately he was only hired for that day.

I met finally with Michael's neurologist to whom I gave a detailed account of the previous evening's horrors. He hemmed and hawed and finally declared he would keep Michael for a week of tests. Still no hints as to the cause of this latest crisis.

I returned to the hospital in the early evening, I think (it's all a bit of a blur), to find Michael now hooked up to an intravenous drip of Heparin, a blood thinner Michael had been given at the time of his heart attack over three years ago. Had Michael had a heart attack? I approached the nurse who in broken English - this is a predominantly French hospital where usually I can get by with my limited French unless I need medical information which is when I insist on English - told me she couldn't give out any information. What? I'm his wife for heaven's sake. Well at least could she tell me who had prescribed the Heparin and perhaps I'd recognize the name of what I assumed must have been a cardiologist. But the name given wasn't one I knew so when I asked the young woman what his/her specialty was, she shrugged and didn't seem to know. Now I rarely think poorly of hospital staff whom I believe all deserve medals for working in such underpaid, understaffed positions but I have to confess to a muttered "Stupid" that night. I came home and researched other uses for the drug but perhaps because of my fatigue, I didn't really come away with anything.

It wasn't until the next morning, now Tuesday, when I returned to the hospital and found Michael finally on a ward, that I got some answers. He was being treated for a pulmonary embolism, a blood clot in the arteries from the heart to the lungs and potentially deadly. The standard treatment for this is Heparin with the introduction of the drug Coumadin (aka Warfarin), another heavy duty clot-buster, and given in tandem with the Heparin until the INR levels (see notes in comments for explanation) reached 2.0, something that would apparently take several days to achieve. So Michael was in for a long battle it seemed.

It is now the following Sunday and Michael has achieved the anticipated 2.0 but must remain stable at that level for a few days before the doctor feels it is safe to send him home. It has been a long week with Michael's mental health deteriorating rapidly, forcing the staff to bring out the restraints to subdue him. These measures, though necessary I know, only serve to feed his paranoid delusions that he is being held captive by enemy forces and must, at all costs, try to escape. As things unraveled during the week I vowed on the weekend to try and not leave him alone at all during the difficult hours, between noon and nine pm. I recruited his caregiver and friends to allow me to keep my hours of vigilance down to a couple of shifts of three to four hours each a day. So far the strategy has worked and he has been calmer the past two days. I made some suggestions concerning his medications and the doctor agreed to implement my ideas which have also helped. I stay and try to replicate our bedtime ritual each night, leaving him only when I see him starting to drift off to sleep. 

Michael is still at war but with a comrade-in-arms at his side he is at least calmer. He is no longer asking for bullet proof jackets from home (because we have so many of them lying around) or talking about getting a supply of hand grenades. Since yesterday he has been detached from his intravenous drip of Heparin now that the Coumadin levels are high enough so he is no longer trying to rip that out.  He was successful at that on Friday afternoon just before I arrived. I walked in on a bloody scene with four staff trying to calm him and clean up the bloodbath from the torn out IV. No war is waged without bloodshed, it seems.

I hope to have Michael home within a couple of days. I know he will leave this battle behind at the hospital and settle back into his quiet and relatively peaceful existence at home. I will be grateful not to have to be his Commanding Officer anymore, though I suppose I never really get to leave that job behind. At least at home he enjoys some freedom of movement, the only restrictions being those imposed by his own body.


  1. INR is the acronym for International Normalized Ratio. "Warfarin belongs to a category of drugs known as "narrow range of effectiveness" drugs. This means that there is a very narrow range where the drug is considered therapeutic. For most indications the INR range is 2.0." (March 2002, Patient and Family Education/ NYU Medical Centre)

  2. Claire;

    I continue to marvel at the strength that God has given you to make this journey with grace, and even a sense of humor. Your writing is a blessing to me, despite its fear-producing nature (as a person with Parkinson's disease who lost a father from the same disease accompanied by Lewy bodies which had similar effect). I am sure it must be painful at times, but keep writing. You will remain in my prayers, as will Michael. Thank you.