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Wednesday, December 29, 2010


Christmas 2010 has been and gone, accompanied by a host of strong emotions.

As a Baha'i, Christmas is no longer my holiday, but as I have been the sole Baha'i in the household for years until Michael himself declared last year, and since Christmas was a strong tradition in our household and extended family long before I chose to follow this Faith - for which one of the main pillars is an acknowledgement of the equality of all religions - I feel it is entirely appropriate to continue the practise of this tradition which for me has always symbolized unity and love and a celebration of the light that Christ brought into the world, a light shared by all the world's great religions.

The preparation for this glorious life-affirming celebration is long for me. This year I started in the fall with my various knitting projects that kept me sane through a quiet season and will continue to sustain me throughout the long winter months. I furiously knitted my way through five pairs of zany socks and three scarves, completing my last project mere hours before deadline. All that aside, there was also shopping, cooking, cleaning, and bed-making for our now large family of four adult children and their various partners, all of whom descended for a rare family reunion. All these tasks had to be carried out around my caregiving duties.

It was a wonderfully loud, boisterous, laughter-filled, exhausting few days, with our healthy, happy children, reminding me that I am, in fact, getting older and far less tolerant of the late-night chat sessions I indulged in for two nights before I succumbed to fatigue on Christmas Eve and retired before midnight. I love it all, but this year, the evening when the last out-of-town offspring and her fiance left, I collapsed on the couch and languished in front of the television for three hours of what amounted to more napping than viewing.

But it has been a celebration tinged with very mixed emotions, not the least of which was a strong sense of gratitude that we still have Michael with us, something I cannot take for granted given the dramatic events of the past few years, beginning with a mild stroke in September 2006, followed by a heart attack five months later and a host of other calamities since then, most of them documented in these pages. The previous Christmas had been difficult as Michael struggled to adjust to the new powerful neuroleptic drugs administered in a desperate attempt to stabilize his wild psychosis. He was still suffering from extreme anxiety attacks, and Christmas day last year, with a houseful of guests, sent him into a particularly deep and harsh attack requiring extra calming medication and time out in his room away from the crowd. I was so busy with meal preparation that day that I had to recruit kids and guests to take turns sitting with him in his room to keep him calm. Finally after two hours he was able to rejoin the crowd.

So this year I braced myself for a replay of last year's events. But, perhaps because we were a smaller group of family and close friends, only eleven, or perhaps because he has generally been so much better the past two months, mentally and physically, he was happy and stable all day and truly seemed to enjoy having his rambunctious and adoring offspring around him.

I was grateful for the stability because I was battling my own emotional turmoil. It has been a very sad year for me and Christmas Day was especially poignant. It marked exactly a year since my dear brother-in-law had died, leaving behind my very sick sister and their only daughter who has had a heavy load coping with her mother's care. Fred died quickly of cancer but had been my sister's primary caregiver for years, only giving over her care to others when he was too ill to continue himself, a few short weeks before he died. That same December we also lost two members of the same branch of our extended family in England, my cousin and his mother, one leaving the week before Christmas, the other, the week after, with my brother-in-law sandwiched in between. A very sad time indeed.

Christmas morning I opened a gift that my sister Ann had clearly had a hand in choosing. Baha'u'llah, the founder of my adored Faith, had a fondness for roses. One day many years ago I mentioned this in passing to my sister when she was still quite healthy. Since then, every single gift she has given me over the years has had roses as the predominant theme. There have been quilts, paintings, carved wooden boxes filled with rose-petal potpourri, and diaries, all riotously covered in roses. Last year there was nothing from her for Christmas which didn't surprise me given how challenging their lives had become. Her continued survival was gift enough; so imagine my surprise when a small package arrived a few days before Christmas this year. Knowing how very ill she has been lately, in and out of hospital with her cancer, a stroke and related problems, I was sure Ann had sent her daughter out to buy the small gift for me, or even that her daughter had shopped without consulting her mother, but when I opened it I wept, realizing Ann had at least had a small part in its purchase. It was a tiny little porcelain pot with a hinged, clasped lid and a thin vertical slit up the side, a mysterious little gem, but it was the pretty painted roses all over it that made me cry. Ann had obviously been thinking of me at a time when she is clinging to life by a thread.

As I sat and wept for a while, my children assured me it was appropriate to remember those we have lost and are close to losing. We all quietly took another few moments out of what would be a hectic day to remember another passing. Only weeks before Christmas this year, on December 2, I lost one of my oldest friends to a horribly violent, murderous attack on his sailboat with his adult daughter, stranded in a sheltering cove from a stormy sea. A seasoned and cautious sailor, Milan was travelling from Honduras to Panama when pirates killed him in what was probably an attempt to board the boat and rob him. He had enough presence of mind to slip the only weapon he carried on board, a flare gun, behind his daughter while he tried to help these violent men whose ruse was to ask for assistance with their motor. As Milan bent over to help them, they shot him four times, killing him instantly, but his daughter miraculously was able to scare off her father's attackers by waving the flare gun and shouting, "What have you done?" They fled but left her to survive seventeen hours in stormy seas alone with her dead father before being rescued. The horror of this story still haunts me, and the ache of losing my old friend, whom I met in 1974 when I was still just a kid of seventeen, is sometimes overpowering. Our families were close for years when our kids were little, and he managed to keep in touch with us through the difficult years of his divorce, visiting us for the last time just last summer. It comforts me that he looked so well and so happy after years of sadness, so obviously enjoying his new life as a sailor in the Caribbean.

I sit here writing, feeling somewhat spent and emptied in the wake of these powerful emotions. Christmas is always a wild, busy, happy time for us with a large family but this year there is so much to be grateful for and so much to be saddened by that my heart nearly burst.

Sunday, November 21, 2010

The Thread of Life

I have abandoned writing lately and thought I should explain why. After I wrote the piece "A Stern Talking-to", I did, in fact, have that serious chat with myself and took action. This is a process I have had to repeat every fall for the past few years as winter approaches and I find myself dreading the long quiet dark days ahead. This year is no different.

It was through the process of writing, actually, that I came up with a solution. I recently wrote a short story based on our aborted trip in October 2009 to the west coast to visit my very sick sister and her equally sick husband, who died only two months later. We never made it because Michael's battle with deep psychosis peaked on that long train journey and we had to jump off in Winnipeg to return home immediately. I was deeply saddened and disappointed not to see my sister for what I thought might be the last time. As it turned out we never saw her husband again.

During that voyage I had started a new knitting project to while away the hours of a six day train journey, three days each way. But with Michael so ill I had little opportunity to accomplish much the two days we did spend on the train. All my energy went into keeping him calm which during the night was nearly impossible. During the day when the daylight pushed away the demons, we both succumbed to naps, leaving my knitting project mostly untouched.

On returning home I resolved to finish the project through the winter months but I didn't realize how challenging that time would be. It was a period of adjustment for both of us: for Michael there were months of difficulty adjusting to the new drug regimen with extreme peaks and valleys in his health; and for me there was the challenge of just staying on top of all the new duties thrown at me with a now very disabled husband, both physically and mentally. So the knitting sat ignored. Every time I did have an opportunity to work on it I found myself completely uninterested. The project languished in my knitting bag.

Processing that ordeal through writing, I realized the real reason I was rejecting the project. It represented something of a chronicle of that terrible experience on the train that I had little interest in revisiting . I felt no pain or anguish on picking it up, just an overwhelming fatigue and annoyance. I wanted nothing to do with it anymore. I had at first thought that my reluctance to pursue the shawl was a lack of interest in knitting in general but it was when I made up my mind to give it up completely and start something fresh that I suddenly felt excited about my hobby again.

Recently, whenever I have had a moment of respite, I'd rush off to the wool shops and spend a happy hour or so poring over the pattern books and the vast array of splendid colours each store had to offer. I spent far too much money on complicated patterns, so convinced was I that I could tackle anything. I spent money on wool and triumphantly brought home materials for several projects. I started on one very difficult cardigan pattern for myself but quickly realized that my concentration was impaired by the constant din of the television, Michael's sole source of entertainment throughout the day. And I couldn't abandon him and flee to another room to pursue my hobby; I needed to be close by in case he needed me.

I settled on more modest projects, easily completed in a few days, and I am on fire. I've thrown the old shawl into a closet where I'm sure it will live out it's days until I decide to unravel it and start something new with it. In the meantime my current projects beckon to me throughout my day, urging me to finish them, so eager are they to become whole and functional. I find myself rushing to finish up my various domestic duties, so eager am I to sit with my new friends. And the television, which two months ago I thought might completely derange me, has become a nice backdrop to my simpler projects. Michael and I sit companionably, he watching or snoozing through his various sports shows and I happily knitting away.

With this entire commitment to Michael's care, I cannot look further than a few months down the road. I have given myself permission to reevaluate my own strengths every once in a while and not look beyond. It is why I think I am having difficulty committing to a long complicated project; it's easier to see the endpoint with the shorter ones.

So, dear Readers, if I abandon my writing it is because, for now, at least, I have a new love, and like a new love, I cannot quite get enough of it. It is making the prospect of a long quiet winter more than bearable.

Saturday, October 9, 2010

In praise of the humble flax seed

Just when you think things could never get better, after two months of a variety of extreme symptoms, some brand new developments, and serious mental illness, suddenly the sun comes out and you realize that your dear husband is actually much better than he has been in months. Miraculous? Maybe not.

The extreme abdominal pain that sent Michael to hospital in early August, that had been working up to that climactic moment for months with daily anxiety-causing discomfort, has completely disappeared.

The alarming breathing issues that also climaxed in late August, resulting in another more prolonged hospital stay, also gone.

The kidney/urinary tract infection that for two weeks caused all kinds of pain, restlessness and delirium - gone. The bad cold that followed close on the heels of that infection and threatened to descend mercilessly into his lungs, that kept him and me awake for two weeks of horrible coughing - gone. Mind you there has been a temporary recurrence of bladder issues in the past week, but it was milder than the first a month ago. That, I fear, will be an ongoing issue now.

Michael lurched from crisis to crisis for two months and things looked very bad. His mental state had deteriorated to the point that he was even unaware of his own identity many mornings and on several occasions he was unable to identify me or his son. He was eating very little, losing weight rapidly. We were all once again braced for the worst. I was reviewing my finances, generally making sure, as well as I could with a serious sleep deficit, that all our affairs were still in order.

Gradually over the past month, as I emerged from under the heavy cloud of insomnia, I realized that Michael is more lucid and generally healthier than I have seen in quite a while. This does not mean that the severity of his Parkinson's symptoms has improved; in fact, if anything, he is far less mobile, he is still falling and he is sleeping much more during the day. But the summer complications of the disease, that at times made me think Michael was on the brink of death, have all but gone. And a most life-affirming development, his appetite is once again very hearty.

I have given this return to health much thought and I think there are several factors at play here. One may be (and I'll get this one out of the way quickly for those who are uncomfortable with any mention of spiritual matters) that just about everyone I know, and probably even more, has been praying for him. I am a firm believer in the power of prayer and positive thinking even if it is simply an awareness that others are thinking of you. It is empowering. I won't cite here any of the scientific research done on this mysterious force but it does exist.

Another factor is that Michael often takes weeks to recuperate from a hospital stay. If you have been reading my entries you will be aware how devastating a hospital stay is for Michael, and the longer the stay, the longer the recovery time. In August he had two visits within a couple of weeks of each other, the first one lasting two nights, the second, eight nights. We are now more than eight weeks away from that last visit.

An adjustment in medications is also a possible reason for the improvement. The neuroleptic drug Clozaril, that was prescribed last November when Michael was so mentally ill, was increased slightly during the most recent stay in hospital for the breathing issues. It takes at least three weeks for any change in medications of this kind to take full effect. Since the cause of those breathing issues still remains a mystery - lots of conjecture but nothing certain - maybe this adjustment is finally having its full effect in controlling the frightening breathing irregularities. I'm not sure how but I'm willing to keep an open mind. The drug itself is a very dangerous one and makes me very nervous but to return to that frightening pre-drug state I believe is not an option.

A couple of weeks ago, I expressed concern to the visiting doctor that Michael's blood pressure and heart rate had both been alarmingly low. I asked if there was any way we could reduce his diuretic. The doctor agreed that of all the heart drugs Michael is on, this one made the most sense to adjust, so the next morning I reduced his Apo-Hydro by fifty percent as instructed. Since then his blood pressure has still been low but slightly improved. That could explain some of his general improvement; low blood pressure makes him feel extremely tired and lethargic and causes more falls.

In consultation with the neurologist, I have reduced his Parkinson's medication by twenty per cent. The reason for this change was survival, my survival. While he was in hospital for the longer stay in August, he was so delusional and anxious that he became aggressive, constantly trying to flee. The staff resorted to hiring guards and restraining him physically whenever I or anyone else he trusted wasn't there to keep him grounded. I suggested to the staff that they reduce his Parkinson's medication, thereby disabling him throughout the day more effectively and safely. On his return home from hospital I resumed his normal levels of the drugs but, when he fell ill with the urinary tract infection in September and became very agitated and manic, I once again reduced the drugs by the same amount. What I have discovered is, that with carefully timed doses, he is actually no more disabled throughout the day; in fact he now enjoys more mobility during his more wakeful times and sleeps better at night. He always sleeps most of the morning so I can stretch the time between doses during those sleepy hours and shorten the time between the more wakeful afternoon hours.

But I believe there is one small change I have made that could be responsible for much of the improvement. Constipation has been an ongoing complication for poor Michael, and the treatment over the past year has been drug therapy. First a nasty overly sweet liquid called Lactulose was prescribed and as the problem worsened, it was increased to the maximum dose. Then a "natural" non-prescription laxative called Sennosides was added and gradually increased to above the maximum daily dose. Finally a stool softener known as docusate sodium (trade name Colace) was prescribed and, again, increased to the maximum dose as all the treatments became less effective over time. When he was up to twelve pills a day (eight Senna, four Colace) and four tablespoons of the sickly orange syrup, I became alarmed when things deteriorated to the point that for several weeks he was only able to evacuate using an enema. Though I desperately wanted to, I was terrified to reduce the drugs because I was afraid that removing them would exacerbate the problem. I should add that all the while I was using the time-honoured home remedies of increased fiber and lots of fluid, though nothing seemed to help.

It was a close relative who told me about the wonders of flax seed for such problems. I dismissed it at first thinking it would be no more effective than all the fruit, whole grains, bran and fluid I was trying to shove down Michael's throat. But after the last hospital stay when things got much worse and his abdominal pain was nearly constant, I realized there was nothing to lose in trying the humble flax seed which can be obtained very inexpensively in almost any grocery or health food store.

I started Michael very gradually with one teaspoon of ground flax, pulverized in my ancient blender and soaked for a few minutes in a tall glass of water. On swallowing this glutenous mass every morning, Michael would grimace but bravely persevered. Two days later we had action, nothing dramatic, but it was independently produced. Do you know how exciting an event like that can be after weeks of having to assist this poor man perform what should be a normal bodily function? I could have danced in the street. Actually I think I let out a joyful shout.

Every day I increased the amount (he is now up to and stable at a heaping tablespoonful daily), not wanting to overdo things too quickly in case it caused further abdominal cramping. But the first miracle, before even regular activity was established, was the almost immediate disappearance of that nagging discomfort. Even if nothing else was achieved, that in itself was a major accomplishment; every evening I had watched Michael doubled over and anxiously rubbing at his upper right abdomen.

Finally after a few weeks of his body taking over on it's own once again, I began very cautiously to reduce the laxatives. Every Saturday night, as I set out his medications for the coming week, I reduced one of the three constipation drugs very slightly. The first victory was to eliminate completely the Lactulose. Now a few weeks later I can happily report that he is down to one Senna pill and one Colace, a mere two pills a day, not twelve. My hope is that we will be able to eliminate the drugs completely and it seems that we might. I will, of course, keep them on hand. Once his body has been free of the drugs for a period of time, I believe they will once again be effective when and if we need to use them. But my first line of defence will be to increase the flax before I do anything else.

I am wondering, too, if the flax might be responsible for the elimination of the breathing problems. I know it's a bit of a stretch but, with the disappearance of the upper abdominal pain as more normal bowel activity resumed, perhaps there is less pressure on the diaphragm. I'd never be able to prove it, of course, but the breathing issues did improve along with the disappearance of the abdominal problems.

Whatever the reason for all of these improvements, I think the general reduction of medications can only benefit his overall health. Obviously Michael will never be drug free - he needs them to survive - but it is encouraging to see such positive results after such bleak expectations. I know there will be further challenges and mysteries that befall him in the coming months and years as this disease advances but for the first time in ages, I feel as though we have regained some control. And that is empowering.

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.

Thursday, August 26, 2010

At War

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, August 5, 2010


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.

Thursday, July 1, 2010

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

Wednesday, June 2, 2010

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.

Thursday, May 27, 2010


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.