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Tuesday, September 28, 2010

A Stern Talking-to

It's time for me to sit down with myself and have an encouraging but stern chat. September arrived damply and as we approach the end of the month the ground is now thoroughly soaked and my spirits are correspondingly heavy. Inertia has soaked into my body.

The last two months of Michael's battle with advanced Parkinson's disease have been more challenging than usual. Two hospital visits for a bowel obstruction (aka serious constipation) and severe breathing issues, a severe kidney/urinary tract infection and now a cold have been Michael's burden. We just seem to get back on our feet from one crisis when another follows quickly on its heels, leaving Michael even weaker each time. I have often said that with each crisis he seems to take two steps backwards, then one step forward, never quite returning to the pre-crisis state of health. What we have seen over the past year is a steady drop in his weight (30 lb. loss), a corresponding loss of appetite, less energy, more serious and frequent falls, more limited mobility and an overall decline in his general health. Hallucinations are becoming commonplace where before they were isolated to health crises, and confusion is increasing. Michael doesn't really become at all functional now until about two in the afternoon and is ready for bed by eight at night with many naps in between.

Michael's level of care has increased to the point that I must be that much more vigilant when he is mobile those few hours a day. Until recently I could leave the room comfortably and engage in a small project such as housework, cooking, gardening, writing, talking on the phone, but I must now be even more alert to potential problems. There is this new breathing issue that requires nearly constant awareness. There are bathroom issues. There is help with food and mobility. There is the nearly constant assistance he needs with the television which has become a huge mystery for him but as it is his only source of entertainment, I need to be alert to any trouble he gets into with channel changing or I will find him "fixing" the problem in an entirely inappropriate and usually destructive way.

As it has always been, it is my responsibility to change with the disease and adjust my approach to situations as they change day to day. I am usually very quick to adapt and like to think of myself as easily going with the flow. But lately I am finding the constant changes difficult to keep up with. Repeated sleeplessness makes me cranky and the mounting demands leave me frustrated sometimes.

This past weekend I awoke to yet another grey and damp Saturday morning and to the prospect of no respite all weekend. The desperation overwhelmed me and I found myself talking to my poor sick husband about my fatigue. I rarely discuss my own problems with him but suffering from a mild cold myself and feeling resentful that I could not take a moment to pamper myself, I felt I had reached the end of my rope. I told Michael that I might have to think more seriously about longterm care for him. He was mute through my tirade. I'm not sure he took any of it on board. Though the release of tears did me a lot of good, I desperately hope he has forgotten the entire conversation.

I find myself doing very little beyond the basics of keeping the house in order, cooking the meals and taking care of Michael. Anything I enjoy has been abandoned. I am watching a lot of television because it seems to be the only thing we can do together now. I just cannot seem to get interested in much else.

But when people miraculously showed up on the weekend after all when I was expecting no one, I realized that the support continues to be out there and I need to make the effort to get some projects going throughout what will probably be another harsh winter (we live in Canada, after all): abandon the boring knitting project that has lasted an entire year and gotten nowhere and find another more interesting pattern; get back on track with exercising as soon as I get some sleep banked; dust off my sewing machine and get something, anything going on that; overcome my reluctance to use my newish digital camera; scan older photos to share with people; maybe pursue more writing projects; find interesting books to read; anything that can fill my time within the confines of this house.

My parents came to this country from England 53 years ago when I was an infant and settled in remote small towns in Alberta and British Columbia where sometimes modern conveniences were non-existent (including plumbing in one community) and domestic labour for my mother was all-consuming. And yet, I never heard her complain about her isolation. She was always hard at work and found great satisfaction in her sewing, knitting, reading and community involvement when harsh weather conditions allowed. I believe she even found great satisfaction in her various and many domestic chores. She never drove and spent many, many days on end confined to small, cold houses with sometimes even limited telephone contact with the outside world. She was a very intelligent person and truly a pioneer woman, making the most of what was often a very difficult life.

It is her spirit I summon when I feel most alone and overwhelmed. I hear her firmly but patiently telling me to just get on with it and not complain.

Wednesday, September 15, 2010

Saturday Night Fever

"You look grey," I said to my husband while bending to kiss him goodnight last night.

"I'm getting old."

"You're still the most handsome man on the planet," and I climbed onto the narrow hospital bed next to Michael.

I could hear his heart beating through his thin ribcage. Still strong. He stroked my back. I wanted to say that I'm afraid he's leaving me but I didn't because the tears started to flow. Not a flood, just a small, gentle rain shower. The raging deluge would probably come sometime later when I'm all alone in my room with no one else in the house but a sleeping husband and unconcerned dogs. As soon as Michael's breathing settled into slumber I climbed out and went to bed.

Michael's latest calamity befell him Saturday, or at least that was when I finally figured out something else was terribly wrong. It seems we cannot go more than a couple of weeks now without a new layer being added to his terrible affliction. That worries me.

For a day or two before, I was aware that Michael's mental health was declining again. There were more confused nighttime wakings than usual, a spike in his restlessness and an even more severe lack of focus during the day. It is an odd anomaly that when Michael's physical condition worsens, a kind of frenzied, feverish energy takes hold of him.

On Saturday things reached a head. He was clearly in a paranoid delirium and losing a grip on his closest human relationships: he didn't know his own son and he was very vague about his relationship to me.  He did, at least, know my name but not our son's. I could tell he must be hallucinating as he yelled out to some invisible visitor. When I touched him he was burning up with fever and he was becoming argumentative, accusing me of being his jailer. I was becoming the enemy.

I called my neighbour and good friend who happens to be a nurse. She trotted over immediately with stethoscope in hand and listened to his lungs. He had momentarily fallen into a coma-like sleep making her job easier and regulating his breathing which had been my primary concern earlier in the day. Lungs were clear. She suggested he might have a respiratory infection or perhaps a urinary tract infection (UTI). Michael is almost never felled by viral respiratory infections, one of the small mercies of this battle with PD, so I doubted that was the problem. It could be the latter.

When Michael came to a few minutes later, I asked if he had been suffering any pain on urination. Having had a couple of UTI's myself in the past, I know they are impossible to ignore and be discreet about so I doubted it. Since I have to monitor his bowel activity so closely, surely I would have noticed that. But no, apparently he had been suffering with pain for a few days, though his grasp of time is so muddled it's difficult to assess how accurate his response was. However he was remarkably lucid when responding about the pain. How could I possibly have missed that? I suppose with my complete preoccupation with all things associated with his bowel and breathing activities lately, I had failed to interpret the grimaces he made as anything but bowel problems. I have to rely on his body to give me messages since he is now well beyond being able to articulate any problems he is having, unless, of course, it has to do with his paranoid concern over covert military operations.

I jumped into action and called the hotline number I have for home-care patients. A kind switchboard nurse asked pertinent questions related to my layman's diagnosis of a UTI. Keeping in mind this is Saturday evening by now, imagine my surprise when Michael's doctor called less than half an hour later from his home. He agreed that my diagnosis was probably correct and asked for pharmacy information so he could call in a prescription for an antibiotic. In the meantime, he said, he would send down the on-call nurse to take a urine sample for analysis so they could fine-tune the medication later if necessary. He asked if Michael was suffering any back pain. Apparently not, but his pelvic area was very distended, I reported. The doctor suspected a kidney infection.

By 8 pm, not three hours after the call to my neighbour, Michael had been seen by the nurse and I had an antibiotic in hand, thanks to a good friend who made the trip to the pharmacy for me. I started the course of treatment immediately. He was so restless by now that I was having difficulty managing him. He was bouncing around the house, rushing upstairs to look for our machine gun stash, checking under beds for intruders, generally winding himself up into a serious frenzy. I announced it was bedtime, earlier than usual, but I needed a break. I gave him his nighttime sedatives, manhandled him into bed whereupon he promptly fell into a deep, but temporary sleep. Despite a restless first few hours, he did have a fairly calm night.

His fever came down in the night perhaps because of fast acting medication. The next few days were an enormous challenge because of the delirium and hyperactivity during the afternoon and early evening. On Monday afternoon it was bad enough to prompt me to suggest a drive; the car always seems to soothe him. It reminded me of when our kids were little and absolutely refusing to settle down for a nap. Michael would load the child into the car and drive for ages, if necessary, to give everyone a break from the screaming, over-tired bundle of energy. And it always worked.

I grabbed my ipod with hours of music loaded onto it and off we went, music blaring. I donned my sunglasses and tried to pretend I was driving a very expensive sports car instead of my powerless little Hyundai Accent, a game I used to play when the kids were little and I needed to escape reality for a while. Cars and music are a magic combination for soothing wildness. We drove through the countryside for 90 minutes.

Things have settled down somewhat, I am happy to report. Michael is sleeping nearly all day today; I think the medication is working. The doctor called yesterday to report that the lab results were back, confirming what we all suspected, an infection, but it will be a few more days until the culture reveals the exact bacteria. In the meantime I am to stay the course with the current medication and report any changes. The doctor rattled on in medical jargon that I had trouble keeping up with. He seems to think I know a lot more than I really do but I hastily scribbled down words like pyelonephritis, misspelled, of course, and hit the computer immediately on hanging up.

Pyelonephritis is urinary tract infection which has migrated to the kidneys. I have learned that UTI's are very common in advanced Parkinson's patients. Because all the muscles of the body are implicated in this nasty disease, it is very difficult for sufferers to completely empty their bladders, always leaving behind some urine. This creates a perfect breeding ground for bacteria. In Michael's case the infection seems to have migrated up to his kidneys. The doctor said under normal circumstances he would admit Michael into hospital but being acutely aware of how disastrous that would be, he is leaving him in my care, at least for now. I will try very hard not to miss the next infection when it hits because it is very likely that poor Michael will be plagued with this problem for the rest of his life.

So our feverish dance of the last few days seems to have settled down, thanks, once again, to drug therapy. Watching my husband so weakened and ill from this latest calamity, my fear is that this might become our last waltz.

Wednesday, September 8, 2010

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.

Monday, September 6, 2010

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)" (

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 " ( 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.