Claire's Hair Salon

Many years ago I undertook the task of being the family barber. Our two oldest daughters were still small at the time and we were on a tight budget. Besides, taking small children to a hairdresser can be an expensive adventure, not always successful, though the girls were generally very well-behaved.

I got books from the library and practised on my poor test subjects. Michael, whose job with the federal government required that he look fairly well put together, was very brave allowing me to hack away at his hair, even after one wag at the office asked him if his head had come in contact with a chainsaw. After a few miserable haircuts he quietly resumed his trips to the barber and I didn't argue.

Before I decided to go for a very short coif myself recently, I had been known to slash away at my own hair on occasion, much to the dismay and disdain of any hairdresser who tackled it later; but I have forgivingly wavy hair that hides a lot of sins. And I don't really care. Lately, when I have had very limited time off and my lengthening hair is getting in my way, I have been very tempted to take the clippers and shave my own head. I still might do it one day.

The girls endured years of crooked bangs and nicked ears until they had the funds to take themselves to the professionals. Except for the occasional simple trim here and there, I have never been asked to cut their hair again. No hard feelings. One of them gave another a birthday card one year that said something like, "Don't worry, things could be worse. Mom could still be cutting our bangs". The picture on the front of the card was a cartoon drawing of a little girl with a crooked haircut who resembled the many photos of my three poor daughters taken over their early years.

Then along came our son, who is now a very fine and civilized young man of nineteen, but there was a time when he could have been mistaken for a demon-child, especially if anyone tried to do anything to him. Haircuts, vaccinations and doctors' check-ups were all nightmarish experiences that I came to avoid. The only time I attempted to take that boy to have his hair cut professionally, he had to be physically restrained on my lap and all the while I plied him with lollipops, which ended up coated with a thick layer of cut hair. Exhausted and frustrated, I gave up and requested electric shears for my birthday which then meant years of very short military- style bean shaves (Note: His father was never brave enough to step up and offer to take the boy with him for that quintessential, male-bonding, haircut experience). But it was always an athletic event, requiring tight swaddling of the child in a towel to reduce harm to both victim and torturer (not sure which I was). With his fine blond hair he looked like a young cancer victim but the shorter the better, giving me a long respite before the next ordeal. As his temperament improved and I no longer had to fight as much with him about it, I started to refine my techniques. He grew to enjoy the experience and it was always a fairly quick procedure, having honed my skills of shearing a writhing, screaming creature over the years. To this day, he usually prefers Mom's haircut in the kitchen if he has little time or money to spare for a visit to the professionals. And I rather enjoy the opportunity to have my very busy son sit still for a few minutes and chat amiably while I snip away.

Over the past few years, since Michael left work in 2003, I have resumed cutting his hair but, after years of training from our son, I had gotten pretty good at it. He would sit in the kitchen on a bench and we'd jack up the radio. It was always fun but I'd joke that my haircuts took a few days to perfect so he'd have to endure a day or two after the fact of me carefully scrutinizing my work and grabbing the scissors to snip away a missed hair or two.

After his spell in hospital back in November of last year, he came back a weakened man and no longer able to sit upright long enough for a regular haircut. His lovely abundant grey hair had grown very long making him look like the hippy he used to be but had had to put aside for years of work at National Defence and playing the part. Regular showering and hair-washing were becoming difficult and most days, grooming consisted of my giving him a sponge bath in the morning on rising and before getting him dressed. The long hair would have to go. Out came the electric clippers again for the brush cut which could be done quickly and safely but made him look even more ill and thin. Like with my demonic young son, the cut would last a long time and I could let it go until he achieved that poet/hippy look again before shearing.

But today I was feeling brave and gave him the choice between the quick shave or the slower cut. He chose the latter but I warned him that if the going got rough I reserved the right to abort the mission and use the clippers.

On went the music and out came the scissors. Deep breath. Here we go. He sat well for the first few seconds but his medication had kicked in, activating the dyskinesia, the involuntary bobbing and weaving that Parkinson's patients suffer when their medications are "on" and working well. When the medication is "off" the patient is usually rigid and immobile but the drug Levadopa (Sinemet), which releases the patient from that prison, has the unfortunate side effect of sometimes uncontrollable dyskinesia. Fortunately, Michael has been spared the really extreme reaction that many have (Michael J. Fox is a good example of someone who suffers badly with this problem if you've ever seen him), but he does certainly move around quite a bit more when the drugs are working. Imagine cutting the hair of a moving object and you'll get an idea of the challenge. Fortunately our son prepared me well for this task and at least I don't have to deal with wild screaming on top of the gyrations.

The haircut was a success, if I say so myself, but what I missed was the intimacy of this little ritual. Yes, the music was blasting and I was trying to dance around but my concentration was fierce as I worked around his ears, trying not to nick him while he moved. And he couldn't sit upright, so every few seconds I'd have to shove him back into a more upright position. What I missed was his slightly saucy demeanour that always spiced up the experience. Every guy wishes he could grope the hairdresser, right? Well, Michael could and did, with impunity, but that was all in the past. Now he just sat there, enjoying the experience, I hope, but not with his usual lustiness. What really made my heart ache was looking into his eyes as I made sure the sides were even. He stared back at me with those blue eyes that made my knees melt 31 years ago and he was all there, just for a moment, the old Michael, a glint and a window into the man I used to know, locked away inside.

I made the haircut relatively short to last awhile. But I was saddened. I had given my Dad one of his last haircuts one January night in 2003 just months before he died. He sat in my kitchen allowing me for the first time ever to cut his thin silver hair, just like a small boy. I saved a little lock of that hair as I did my mother's the last time I trimmed her hair nearly two years later at her nursing home when the whole place was under quarantine with a flu virus and she was confined to her room for days on end. I would always brush her hair when I visited but she was fed up with her mop of still-rich, thick, never-dyed reddish hair so Claire's salon became mobile. I gave Michael's dad his last haircut just weeks before he died last year; he had always had a brush cut, having been a military man, and his hair, after months bedridden, had become unruly. That had been a challenge, propping the frail old man up on the edge of his bed, his wife holding him steady while I gave him a hasty buzz cut, precariously kneeling behind him on the bed. I didn't save any of his locks which had scattered messily all over the bed.

I didn't think to keep a lock of Michael's hair this time. I swept it all up and tossed it in the garbage, I suppose confident there would be many more haircuts in Michael's future. But he has been so much quieter lately, slipping away from me more with each passing day. I don't know how long he has left, weeks maybe or even years; God only knows. Maybe subconsciously I believe that if I don't keep that lock of hair, he won't go away.

Good News, Bad News

Michael returned home from hospital last Monday afternoon. No fanfare, nothing dramatic, no tunnelling out, just a quiet uneventful departure from his prison cell to the relative freedom of home.

I was able to spring Michael out a few hours earlier than the usual morning discharge time. I had been keeping a pretty constant daytime vigil at his bedside during his eight day stay but especially the last three days when his mental state was spiralling out of control and only my presence seemed to calm him. I did, however, need an occasional break so a few good friends spelled me off over mealtimes. On Monday afternoon I was awaiting one such friend to sit the dinnertime shift when I caught sight of the elusive doctor. I resolved to stay put until I had pinned this guy down, my first direct contact with a doctor in seven days. All medical information during that time had had to be filtered through the nursing staff, some of whose English was not good enough to impart the necessary details with any clarity. Added to that was my lack of essential medical vocabulary in French but I think we all did pretty well considering our various linguistic shortcomings. However, I still had a lot of unanswered questions and was impatient to get my husband home and away from enemy lines.

The doctor arrived just before my friend did. He told me that the results from an angiogram done a couple of days before revealed some very good news: There had been NO pulmonary embolism after all. The week of heavy doses of blood thinners had been a precaution only and in the end, redundant. That treatment had been stopped abruptly that morning. I convinced him to let me take Michael home right away, there being no reason that I could see to keep him any longer.

Pulmonary embolisms are difficult to detect, many being detected only during autopsy as the cause of sudden death. The symptoms Michael experienced - extreme shortness of breath, light-headedness, weakness, increased confusion over a period of about a month - all pointed in that direction. It was a logical conclusion to draw and wise to treat promptly even before a definite diagnosis because to do otherwise could have been deadly if there had been one lurking dangerously. This insidious condition can kill instantly if not detected and is more likely to affect those who are immobile. There is even evidence that Parkinson's sufferers are more prone to pulmonary embolisms than the general population perhaps because of decreased mobility as the disease progresses or even because of drug therapy as one website suggests: "Pulmonary embolism is reported as a possible adverse reaction to levodopa therapy and a frequent, but under-recognized cause of death in patients with parkinsonism. Clinicians should think of pulmonary embolism, a common yet difficult diagnosis when a parkinsonian patient presents with chest pain and dyspnea (shortness of breath)" (www.ncbi.nim.nih.gov/pubmed/10925540).

On some level, I had been relieved to receive the initial, cautious diagnosis of pulmonary embolism because I had thought the dreadful episodes of shortness of breath through which Michael had recently suffered were just another strange development in this nasty disease and were probably untreatable. But embolisms, if caught in time, are treatable with blood thinners, namely Coumadin, a course of which Michael had begun at the hospital. Better the devil you know than the devil you don't, I think is how the saying goes.

So the good news morphed into bad news: Michael did NOT have a pulmonary embolism and the doctors were unsure of the exact cause of his frightening breathing issues. On visiting the neurologist a few days after Michael's discharge from hospital, the doctor simply said that this is not an uncommon development in advanced Parkinson's patients, especially those who were diagnosed at an early age, and the way they try to treat it is through more anti-anxiety medication.

At home that night I did a further google search on Parkinson's disease plus shortness of breath but found very little except an acknowledgement that breathing issues exist, which I already knew, but no insight into the kind of dramatic event Michael had experienced. It was only when I googled Alzheimer's disease and shortness of breath together that I seemed to find entries that described what we had been through. Michael is not officially an Alzheimer's patient but he does suffer from fairly advanced dementia that often mimics classic Alzheimer's disease.

I remember a few years ago when his father, who suffered from Alzheimer's before his death in February 2009, had an unexplained fall one day. I was summoned to assist and make the 911 call for my mother-in-law. When the paramedics came, picked him up and did an assessment to determine that he was physically fine, they said that advanced Alzheimer's patients can actually forget how to do some automatic motor functions like walking, causing them to collapse and fall for no apparent reason. It seems that breathing could be one of those forgettable functions.

The day of our visit to the doctor I witnessed something interesting that might confirm this theory. In the morning, Michael started to breathe rapidly, for no reason that I could ascertain, and his face started to contort in the same way it had that night a bad episode sent him to hospital. As soon as I noticed, I said very firmly to him, "Stop it. Breathe normally." And he did, just like that. Whether this little episode would have escalated into anything more severe is anybody's guess but it did show me that, at least in the early stages of a mild attack, he can be jolted into breathing normally. I told the doctor about it and explained that Michael's bad attacks were like a switch being turned on in his brain, the switch to start the rapid breathing, and then getting stuck in the "on" position. The doctor, who is not particularly forthcoming with explanations or information, simply nodded in apparent agreement of my simplistic analysis and prescribed Ativan, an anti-anxiety medication, to be administered in the event of another attack.

Clonazepam is another drug used to treat breathing abnormalities in Alzheimer's patients, a drug that Michael already takes regularly. In fact, it is the drug I have used with both serious breathing attacks he has had so far and I suppose it worked with the first attack but not with the second. I think one thing I have learned is to act much more quickly and administer the drug (I'll start with Clonazepam and switch to Ativan if the first doesn't work) within the first few minutes if my reminder to breathe normally doesn't derail the dyspnea train successfully.

I will most certainly use the medication Ativan if all else fails - anything to avoid a trip to the hospital if we can - but, on reading the warnings about the drug, I can't help but think it could exacerbate this and other existing problems he has: "Before taking Ativan, tell your doctor if you have any breathing problems, glaucoma, kidney or liver disease, or a history of depression, suicidal thoughts, or addiction to drugs or alcohol " (www.drugs.com/ativan). I just need to take a deep breath and not think about that.

Michael has "forgotten" how to do a lot of things over the past couple of years. I need to remind him daily how to carry out simple tasks such as how to put on a shirt, how the toilet works, how to make a simple sandwich, how to turn on the TV and yet on rare occasions he is bewilderingly competent, throwing me off my guard. But breathing is an autonomic bodily function, impossible to forget I would think. This will mean even more vigilance now; I have become his breathing buddy.

If we weren't already inextricably joined before this, there is no doubting it now.

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.

Ennui

I'm bored. I'm impatient. I am struggling not to be consumed by this disease. My brain has decided not to function well some days. I find myself making silly mistakes about medication and incapable of even picking up a book for more than a few seconds. It has occurred to me that I may be in the early stages of Alzheimer's disease, having difficulty focusing and sustaining coherent thoughts.

Or it could be that I have spent a week without significant respite. This is our first summer with Michael needing fulltime care and our first summer juggling the inconsistency of caregivers who have lives of their own and cannot commit in the same way they can through the winter months. I spend almost every waking hour, and many wakeful hours throughout the night, alone with a man who is no longer the husband I knew. He is a 62-year-old man with dementia severe enough that he can rarely express his needs and when he does express himself with any clarity of speech I feel as though I have entered the twilight zone; the clarity of words does not extend to his thoughts. But then every once in a while, quite by surprise, the old Michael will emerge to say something so very unexpectedly quick witted that I find myself collapsing with laughter. After I have recovered from my laughter I am left saddened at the reminder of who he used to be. It's like a very small window is opened ever so briefly to look into what used to be and then it is firmly shut again to be reopened I know not when.

              __________________________________________________________


It was Monday morning when I was writing the above words. I had silently prayed for some reprieve, some change, anything at all to be different. Our world has closed in recently with another bout of constipation that all came to an alarming climax Monday evening. So my prayer was answered but, of course, one should be careful what one asks for.

After two weeks of Michael becoming weaker, less hungry and less active with the chronic constipation that I struggled to relieve through diet, fluids, increased medications and enemas, nothing seemed to be working well. But Sunday things started happening and I nearly crowed with joy (funny what makes one happy in the throes of chronic disease). At last. Michael seemed to feel a bit better.

Monday morning he complained of right shoulder pain and lower back pain spreading into the pelvis but nothing too severe. He always has minor aches and pains in the morning and usually an hour after administering his Parkinsons medications, all is well and loosened up. Such was the case that morning so I thought nothing more of it. Out of sheer desperation and boredom I suggested a quick trip into town to grab some lunch since my ennui had now morphed into complete inertia and unwillingness to carry on with my usual domestic duties, especially cooking. Besides I have discovered in the past that a good meal of a greasy hamburger can often have the desired effect on the bowels that I was looking for. At least it does for me. So off we went for medicinal junk food. By this time though there had been further happy activity in the bathroom so it seemed that life was looking up. I was a bit puzzled by the fact that the bowel activity was now uncharacteristically loose after no further change in strategy from before. Maybe it was a supremely delayed reaction to the mega-doses of laxatives he has been on. No matter, action was action.

The rest of the afternoon was uneventful. After a late lunch I had given myself the night off cooking supper and announced to our daughter when she came in the door that she was on her own in that department. She was going out for dinner so all was good.

Suddenly Michael was doubled over in pain. I got him onto his bed and gave him a Tums, thinking maybe fast food hadn't been a good idea after all. His agitation increased and sweat collected on his brow. He started talking about going to the hospital. Now hold on, I thought, let's be damned sure this is serious before we go down that rocky road again. But after many minutes had elapsed with no improvement I told Laura that she should cancel her plans because I'd need the car. Michael was unusually lucid; he always is when in pain, yet another curious paradox, and announced he wanted to go in an ambulance. I wasn't convinced this was anything terribly serious yet, thinking it could well be a bowel cramp given the day's heightened activity or perhaps, more seriously, a gall bladder attack, so I suggested we hop in the car and head to the hospital with Laura accompanying us just in case things got out of control during the fifteen minute drive into town. I have made many such drives over the past few years with him in much worse condition and have found I am the epitome of calm in such circumstances, just in case, dear Reader, you are questioning the wisdom of such action.

On arrival at the hospital, things were clearly backed up. It was over an hour before we made it to Triage and by now the pain had subsided which meant Michael was at the bottom of the list with an eight hour wait. Unless, the nurse said, things suddenly worsened. It was then I did a morally questionable thing. I asked Laura to get Dad a snack, thinking that food might just set things off again. I was right. After about two bites of a rather disgusting granola bar (far too healthy, far too tasteless) the pain obligingly set in again. Off to Triage I trotted with Michael who was once again doubled up in pain. We were ushered into the emergency room immediately.

By now the pain was extreme and Michael was hyperventilating and looking wild. People rushed about, vital signs read, and finally morphine was injected. While waiting for the drug to work its magic I was trying hard to calm him down and slow his breathing which was getting more and more shallow the more he panicked. I bent down to his ear and slowly breathed in, and just as slowly breathed out, uttering his favourite bedtime chant "Allah'u'Abha" (God the all Glorious). He picked up on my cue and started nearly yelling out the word, which, at the best of times he has difficulty pronouncing correctly, and now was no exception. So instead of the correct words he was yelling "Allah'u'booby". I was trying hard not to laugh at this most serious moment but all I could think about was how the neighbouring patients probably thought we belonged to some breast-worshipping cult. Never mind. Allah'u'booby got him through to the narcotic-calming of the pain and I'm sure God doesn't care anyway.

Now that he was calm, the testing began. Blood tests and x-rays came first. Nothing. The doctor said it was probably a gall stone but Michael would have to stay overnight as the ultrasound lab was closed till morning. Great. A night of hell awaited. Michael was already in a bit of a delirium from the morphine and succumbing to hallucinations. Nothing new and at least so far they weren't the usual terrifying variety he normally suffers through. I decided I'd better stay with him all night. Besides, with all that morphine and his usual anti-anxiety (clonazepam) and anti-psychotic (Clozaril) medications, surely he'd conk out soon and snore peacefully all night. I couldn't have been more wrong. I find it quite amazing how, when in the throes of extreme anxiety and delusional paranoia, Michael's fight or flight response must be at full throttle and gives him remarkable strength, physical wellness (even if his PD meds have long worn off) and alertness. It turned out to be a very long night with me curled up on the narrow gurney with him, my arm over his chest to calm him and keep him restrained because he was intent on bolting. Even if he had slept and given me a moment's peace the woman in the next cot a mere two feet away seemed to have every ailment under the sun afflicting her lungs and digestive system, resulting in a very noisy night. On top of that Michael's constant wriggling seemed to deactivate his intravenous drip, which then activated the alarm on the machine every few minutes. After summoning the nursing staff the first ten times, I finally got them to show me how to reset the wretched machine. In desperation half-way through this sleepless night I gave him another dose of his anti-anxiety medication hoping it would put him to sleep (Did I mention that the nursing staff let me manage all his medications while I was there?) By six in the morning I was less than congenial and was barking at my delirious husband to shut up as he ranted and raved about who knows what.

Daylight began to creep through the few small windows and Michael's only really coherent utterance all night was "Oh look, it's snowing".  He then promptly fell into a deep and peaceful sleep. It was now 6:30 am and I nearly hit him in frustration but then realized I might have a few minutes to myself while he snored happily. I pulled my stiffened body off the bed and set off to find the canteen and a cup of coffee. Only a few more hours to get through. Surely this is a gall stone and as soon as the ultrasound is done, diagnosis rendered, I could leave him in the capable hands of the surgical staff even though I had very strong concerns about his physical stamina for a serious operation. It all pointed to gall stones: acute, extreme pain in the upper right abdominal quadrant with referred pain in the right shoulder, triggered by a greasy (hamburger) meal and preceded by weeks of belching and bloating. The doctors were almost confirming what I and the Merck Manual had figured out.

I ate my Spartan breakfast in the hospital lobby relishing physical freedom from the imprisonment of the night. I bought a paper and went back. By 7:45 am we were sitting outside the ultrasound clinic. Things were looking very promising for an early diagnosis. But I forgot that the clinics at that hospital book all their in- and outpatients for 8 am so there we sat, or should I say I stood and Michael slept peacefully on his gurney. We waited and waited and even after the procedure, we waited and waited again for an orderly to transport Michael back to the Emergency ward. Apparently three orderlies had called in sick that morning, explaining the frustrating delay.

It was now 10:45, we were back where we started and there we sat some more. Michael was starting to come round and with a second dose of PD meds now in his system I could see that his mania was kicking in. A short time later a nurse came to offer me a small cup for Michael to urinate into, but by now I was feeling uncooperative and refused to perform the task for them. They could deal with my increasingly agitated husband, hooked up to his IV, in the small confined space of the washroom. I had taken him the night before and wasn't about to again. Besides he was in a diaper and hadn't needed to make the trip again. Off they went, two of them to manage him, and apparently were successful.

We sat again, or at least I tried to while Michael in full-blown mania was out of bed insisting he was leaving, attempting to dress himself, trying to "fix" his IV machine, tangling himself up in the tubing, walking away forgetting he was attached and becoming generally very argumentative. I was trying in vain to convince him to sit down and be calm but I could tell by the glassy look in his eyes that he was no longer hearing me. I threatened to leave but it had no impact.

Finally, at 1 pm with still no sign of a single doctor, I approached the nursing station to ask what was happening. "Oh" was the calm reply,  "his urine sample exploded so we have to repeat it". My stack blew. What I read from this announcement was that they still had no clue what was wrong. Why hadn't they performed a second urine sample after the explosive one two hours ago?  And how does urine explode anyway? I returned to Michael who was by now completely uncontrollable. I uttered my final threat that I was going to leave if he didn't settle down and when he was obviously not the least bit perturbed, I knew it was time to follow through. I stormed over to the nurses station again, stated my intention and warned them that they might want to grab that nice young security guard over there because they were going to need him as soon as I walked out that door.

It took all my resolve to leave. I fled to the car and wept. Guilt hammered at me that my parting words to my very sick husband were spoken in anger and frustration. I drove home in a sad and exhausted fog. On returning home I called the kids all of whom were supportive of my decision to leave. Our visiting nurse called about something quite unrelated and she said I did the right thing, assuring me he would be fine. I knew he might not be but he had long since passed the point where I could calm and control him. I had to let things unfold without me.

An hour or so later a social worker called me from the hospital to see if I was okay and did I need help at home, as she was seeing him now in full blown psychosis. We discussed more help but I assured her that what she was seeing was behaviour he usually only reserved for the hospital and that at home he was mostly manageable.

I had a long nap and resisted the urge to call the hospital until late in the evening when they told me he had been sent for a CT scan. Clearly they were still groping for an explanation. I went to bed with cell and home phone by my side but slept without moving for a solid eight hours, the best sleep I'd had in months. On waking, I again resisted the urge to call, having been informed there would be no information about the patients until later in the morning. I went out for breakfast with my friend trying to be normal and to forget about things for a couple of hours; it was a lovely, therapeutic, fun time. I have learned to shift gears well.

Just as I was climbing into my friend's car to return home, my cell phone rang. It was the doctor informing me that Michael could come home. The problem was a bowel obstruction, in other words extreme constipation. They had administered the super enema and to quote the doctor, "I've never seen anything like it". Welcome to my world.

Michael came home with absolutely no recollection of any of the past forty hours, collapsed into bed immediately and slept most of the rest of the day, happy and grateful to be home.

Me too. And I'm embracing boredom.

Give me a load of rocks to carry.

Today I embarked on a project that one offspring called crazy. I have been waging war on my dogs lately and I am having to change my tactics.

Over the past couple of months, since the warmer weather has been upon us, I have had lots of time to devote to gardening. In the past I have been a reluctant gardener at best, fitting the chore into a busy schedule of raising kids and running a household. I always felt it was something I had to get out of the way every year and consequently my gardens, if you could call them that, suffered from extreme neglect after the first flurry of springtime cleanup activity. Rushing is the word that always comes to mind when I think of my past gardening attempts. And impatience.

This year, though, life has slowed down to nearly a crawl. Rather than having too much to fill my day, I now have to pace myself so I don't run out of things to do. I am a born worker; I like to do hard physical work and lots of it so after that first frenzied haphazard cleanup this year, I realized I didn't need to rush. I may never need to rush again in this job of caregiving. The challenge is to fight my natural predilection to work fast and efficiently and instead, learn how to slow down and smell the roses, as they say. I discovered I could take my time and think about my garden, plan things for once, think long term. We have recently had a new front porch and ramp installed which took over the preexisting front gardens, leaving behind something of a wasteland. Feeling under-confident, I pondered consulting a professional gardener but financial restraints put a quick end to that idea. I had to do it myself.

I started by digging small front gardens along the new ramp. Easy enough. Throw in some nice shade plants, step back and watch them grow. Wrong. What I didn't count on was my dogs' inability to change an old habit of stomping through what used to be patchy lawn and was now garden. No amount of yelling and hurling of projectiles would deter them. My tender plants could not thrive and that entire bed was looking simply pathetic. Now, in the past I wouldn't have cared a whit but having so little to fill my long days of caregiving, which mostly consist of watching over a sleeping husband, I was painfully aware of the mess my dogs were making. Then it occurred to me that if plants won't grow then perhaps rocks would! I'd import rocks and try to build a rock garden.

Our yard was littered with some small rocks which I did plant in my garden along with a nice big pinkish one but I needed more. From where can one poach rocks? Suddenly rocks were all I looked for, spotting nice ones along the highway during our rare outings but discounting them because retrieving them would imperil my life. Finally I found some good specimens on my morning walks with the dogs. But how to get them home? I don't have the luxury of taking a second walk without the dogs since consistent substitute caregiving has been a rarity of late, often allowing me only enough time for one quick walk a day, if that . And what about physically removing the rocks? Getting a wheelbarrow past the gate that protects our paths would be impossible. I'd just have to carry them out myself somehow with the dogs in tow.

This morning I set out with my empty backpack squarely on my back. I picked out my rocks on the way into the forest, about a kilometre in I'd say, planning to pick them up on my way out. No point shouldering the load any longer than I needed to and, besides, I might find better candidates along the way. But I didn't, so on the return journey, I loaded my pack with two fine rocks. Really, one was heavy enough but knowing I might not get another walk for a few days with the rather patchy caregiving, and impatient to get on with my rock planting, I decided I could probably manage to carry both. Well the load was very heavy. On returning home, out of curiosity, I weighed my treasures - twenty kilos. You can imagine that I did not dawdle on that homeward journey. The dogs got rushed home and even bending down to hook them back onto their leashes when we left the trail was a challenge. But we made it and I dumped my rocks near their new home as soon as we returned.

Then I experienced a most amazing thing. As soon as that load was off my back I felt the most wonderful lightness of being. It felt like I might take flight and drift heavenward and that feeling stayed with me for some time. It got me thinking about carrying the other kinds of loads we all have to bear. It now seems logical to me that the heavier one's load in this life, the faster and more joyous that homeward journey when we all finally reach it, like being tethered to the ground by a big elastic and finally being let go. It's simple physics: To every action there is an equal and opposite reaction (and I believe that physical laws are equally applicable to things metaphysical, though I doubt that this analogy will bear close scientific scrutiny). I felt comforted for the rest of the day and those rocks will be my daily reminder that shouldering those heavy burdens ultimately leads to wondrous release. We should be welcoming them, not avoiding them. It brought to mind words I have been trying to live by lately but it took this concrete experience to make me feel and not just think the words : "Unless one accepts dire vicissitudes, not with dull resignation, but with radiant acquiescence , one cannot attain...freedom." 'Abdu'l-Baha

Montreal, Part 2

The trip to our daughter's graduation has been canceled and I am working on that detachment I knew I was going to need. Easier said than done.

Last week after the arrangements were made to make the trip to Montreal by train early on June 3, I sat down and told Michael the plans. Perhaps I was wrong to tell him. In the past I have taken one of two approaches : informing him ahead of time and not informing him. Certainly for small daytime outings the best approach is to leave any announcements until the last minute when I know he is going to be able to handle the event physically and mentally and give him what details he needs then. That usually works. But for more important events that are not so easily canceled and for which there can be no flexibility at the last minute, like a doctor's appointment, I find it best to warn him early in the day rather than spring it on him at the last minute. This trip to Montreal I felt fell into that category.

On hearing the news he immediately had a panic attack. I assured him we could cancel right up to the last moment if necessary and he need not worry about anything. I would take care of everything. It was obvious, though, that as the week wore on, it was preying on his mind. He had several nights where he was convinced at bedtime or during a wake-up in the night that the trip would happen the next morning. On a couple of occasions the anxiety at bedtime was severe enough that I had to medicate him.

One evening, after a daytime visit to his mother's where there was some discussion about the Queen's visit to Canada in July, he came home, had a calm evening but then brought out his pens and sketch book and started doodling. The page was full of scribbles and marks that made no sense at all. I asked him to tell me about his picture. He, with all seriousness, explained that the Queen was in a box on his page and he was devising a plan to protect her from the inevitable explosive attack she was going to suffer. He had been entrusted, it seemed, to work on this problem. He continued to work on this plan a few minutes longer and suddenly ripped up the page and threw it away. I felt mild alarm because this was the first time in months that his paranoid delusions had surfaced and it was a bad sign.

To add another complication, he is suffering from severe constipation, the worst since his break-down in the late fall. Whether this is a side effect of the increased anxiety he is suffering or whether it is the actual cause of the anxiety, is unknown. Today is day 8 without any action so the nurse arrived this morning armed with an enema. I have administered enemas in the past but I have handed over the task to the professionals now. One less thing for me to do. Incredibly still no action. This was another factor in my decision to cancel. As the days wore on with no bowel activity I was dreading the journey to Montreal where I might miss the entire event because I would be spending the day scouting out washrooms and assisting him myself or flagging down men to do so for me if male only washrooms were available. You see, when he is uncomfortable with constipation he understandably spends most of the day on or near the facilities. Then there would be the challenges of this problem on the moving train. To make it to this event but then have to miss it for all of that was going to be far more frustrating than not going at all.

So all in all, the Parkinson's gods were conspiring against me. As soon as I announced last night that the trip was cancelled he did have a calmer night. Maybe he will get some relief in that other department soon. If not we may be facing hospitalization again and all the nastiness that entails.

In the meantime I am still working on my detachment.

Montreal

Our daughter is graduating from university next week. The convocation ceremony is in Montreal and though we live only a two hour drive away from the city, it feels like the other side of the planet with Michael's disease. Two weeks ago I made my first foray away from home in months to pick up this daughter to come home for the summer. That took a lot of organization from arranging the logistics of the move itself -not a big problem since I've done it a few times before for her and her older sisters - to the arrangements surrounding Michael's care for the day. Given some recent problems I've had with consistent care for Michael, I was concerned that something might scuttle the carefully made plans at the last minute. In the end the move went off without a hitch and Michael was well taken care of for the 5 1/2 hours I was gone.

But this event is more problematic. The ceremony starts at 10 am which means leaving at a very early hour to drive down through rush hour traffic to arrive on time. I contemplated leaving the night before and placing Michael in respite care, in fact went so far as to make inquiries, but when I talked about it with him, gently preparing him for the idea, he fell into one of the worst panic attacks I've seen in a few months. If I were to go and place him in care, I could face a very sick man upon my return. Family and friends have offered to stay overnight which is very kind and thoughtful but my fear that he might have an attack in their care for what would be at least a twelve to twenty-four hour day made me very uncomfortable. I know I have entered a dangerous zone of having sole responsibility for his care and seeking very little respite but the consequences of a psychotic melt-down outside my care can be frightening even for medical professionals, as we have seen in the past, and even more so for Michael who then needs weeks of convalescence afterward. If something were to happen I would have trouble forgiving myself. It's that simple.

With all this in mind and a creeping exhaustion every time I considered planning to go, I reconciled myself to missing the occasion but happy in the thought that my brother, his wife and another daughter were all making plans to go. Our family would be well represented even with her parents absent.

Then two days ago something changed. Our normally composed daughter ran out of her room excitedly but managed a calm announcement: Not only is she on the Dean's Honour Roll, no surprise if you know this young woman, but she is to be awarded a prize as the graduate in her field with the highest marks. Something to be celebrated.

Suddenly I wasn't content with the earlier decision. I called relatives to tell them the good news and spent the rest of the afternoon planning. Should I try to get someone after all? With a week to go finding someone willing would be difficult even though a dear friend and my brother nervously offered. Besides, Michael is able to grasp the importance of this occasion and really wants to attend so what about trying to take him?

Driving, out of the question. Too many things could go wrong on a road trip especially if he has a panic attack en route. Then I would have to tackle downtown Montreal traffic and struggle to find parking, not an easy or enjoyable task, one that I have tried before and hated, not to mention the fact that as my anxiety increases, as it inevitably does in downtown Montreal traffic, so does Michael's, increasing the chance of a panic attack. Also we would have to leave at an impossibly early hour, long before he is even awake, let alone mobile, most mornings. And there is the fact that for seven months our only outings have been at midday when he is most well and calm. We never go out in the morning when he is mostly asleep, nor after 4 pm when he can become restless and slightly manic. That is the time of day I have to watch him very closely because it is then that he is at his most delusional, believing he can do anything at all. It is the time when he seems to want to operate or "fix" lawn equipment in his bare feet for some reason. Evening outings never happen. Should I try to go the night before with him? Emphatic NO. Michael sleeps in a hospital bed, suffers incontinence and is very likely to be delusional and confused in a different place. And I would get no sleep at all, a serious consideration if I am driving.

Up until last night I hadn't even considered the most obvious transportation alternative, the train. I suppose after our aborted trip to visit my ailing sister in BC last October I had ruled out ever taking the train with Michael again, or going anywhere for that matter. But after our visit by car to Montreal three years ago for the first of many medical appointments for a surgical procedure he then never had, and nearly going crazy for all the above reasons, we took the train very successfully for all subsequent visits. It's faster than driving; it's comfortable; we arrive right downtown, close to our final destination and as a certified disabled person, Michael is entitled to a companion who travels for no charge, so it ends up being no more expensive than driving. We would have to be up no earlier than if I were to drive and Via Rail in the past has been tremendously helpful assisting us. I am counting on the familiarity and the brevity of this journey to keep him calmer than on the cross-country trip.

With this in mind I resolved to book the trip, cross my fingers and try to be completely detached if everything unravels at the last minute preventing us from going. I informed the sister who will be flying in for the event and she suggested meeting us at the train station when we arrive at 8:30 am to help out with Dad. She also reminded me that she and the graduating sister will be staying in a hotel close by for the occasion (they had long ago made plans to paint the town red together after the ceremony) and if Dad were to have trouble, one of our party could wheel him back to the hotel and park him in front of a sports channel - almost always a soporific - for the duration. Things are falling into place. I will be armed with extra medication for both the Parkinson's mobility problems and the potential anxiety attacks he may suffer and I won't be shy to use them to get through the day.

The graduating daughter has urged me not to worry about it. She will understand if, in the end, we cannot make it. I know she will but we've always tried to be present for these momentous events in our children's lives and I want to go. I may, at the last minute, have to cancel or I may consider those offers to stay with Michael and go myself after all. Last night he awoke repeatedly, confused but certain that this was the day to go to Montreal so it is obviously preying on his mind. As with everything associated with caring for him, we'll just have to see and be ready to make changes at the last minute. And I will have to work on complete detachment whatever happens.