Our Daily Bread

One day last week was bread-making day. No, more accurately, it was bread-making month or even year; it had been a very long time indeed since my bread-making machine had seen the light of day. I was not driven by any virtuous motives or new year's resolutions to eat more wisely or more frugally. I was simply cleaning out a cupboard from which a suspicious smell was emanating, worried that the mice had moved in again for the winter and were perhaps living and dying in my kitchen.

Everything came out of the cupboard, prompting that purging instinct I have when faced with a cluttered mess. I discovered, among all kinds of now useless odds and ends - old thermoses and lunch boxes, as well as a multitude of plastic containers - not one but two bread machines. Apparently one such appliance is not enough, even when the cook never makes bread. Then I remembered why I had two. I had found the second machine at our local second-hand store; it was an exact replica of my own which happened to be missing a very essential part, the small mixing "paddle". I had kept my own incomplete model just in case the piece decided to reappear one day, because it seemed such a shame to toss out an otherwise perfectly good appliance. It hadn't occurred to me yet that I could simply order a new part, especially since a much cleaner and newer model had fallen into my possession for a very low price.

So the mice (who had, in fact, taken up residence in the cupboard, but who really couldn't be blamed for the smell, which in the end came down simply to bad housekeeping) can be credited for my renewed enthusiasm for this most ancient and revered of domestic tasks, made so simple by wondrous technology. I bought yeast and set to work planning a meal of soup and warm bread for supper. I started early in the day to be sure the bread would be nicely cooled and crusty by mealtime.

The entire process takes only about two and a half hours. The machine mostly sits quietly on the counter, resting and raising the dough, then baking it. On occasion it emits a nice purring sound while it stirs things up or an intermittent beep to alert the cook of certain stages. Nothing could be simpler. That is, unless the power is cut.

The machine was doing its thing when Michael needed lunch. I was preoccupied with something nearby, but since he only wanted a toasted bagel, I let him do most of it himself. Toasting is still a manageable task most days. I was not paying close attention, but something in my brain registered the drop of an electrical plug onto the counter. My reaction time was certainly not lightening speed; it was probably several seconds before I realized what he had done. For no apparent reason he had simply unplugged my machine, even though the toaster was already connected to the same wall outlet.

At first I didn't realize that this amounted to a bread-making catastrophe. I naively thought I could just plug the thing back in again and carry on. What I learned from the handy little manual is that when this happens, the current bread-making mission must be aborted. No salvaging possible. Red alert. ARGH!!!

I was so frustrated that I couldn't think straight. My immediate reaction, when I thought the whole loaf would have to be discarded, was to jump up and down, waving the instruction manual threateningly at no one in particular and uttering expletives. Michael, who by now was happily munching away on his bagel, looked bewildered. He'd already forgotten he'd unplugged my machine, if it had even registered in the first place. He must have thought I had lost my marbles. I thought I had too.

You might be thinking, quite justifiably, that my reaction was a tad extreme. I am normally so calm and composed that I rarely have such a tantrum. In fact, rare would be an exaggeration. I NEVER have tantrums, especially over such silliness as a spoiled loaf of bread. I ran up to my room, locked my door, threw myself onto my bed and sobbed. After about three minutes of these histrionics, I came to and realized I could quite possibly salvage the loaf after all, since it was very close to completion; I could simply throw the metal canister into the oven to finish off the baking process. When that was done, just in case it hadn't worked, and since there was still plenty of time before supper, I set to work making another batch in the clean canister from the second machine (Ah-ha, the real purpose of the second machine was now crystal clear). I had retrieved the only paddle from the first, possibly failed loaf and inserted it into the fresh canister. In the end both loaves turned out beautifully, and I felt very sheepish indeed. Fortunately, Michael remained completely unperturbed by the little tempest that had swirled around him so I suppose I can at least congratulate myself that on the Tantrum Richter Scale, mine was probably only about a 3.0 and barely felt.

Later in the day, with the sun set and the kitchen cleaned up after the successful evening meal, I reflected on my dramatic reaction. I think it was more symbolic than anything because the bread really didn't matter to me. It wasn't as if I had never had kitchen failures before. No, it was more about that plug being pulled and what that represented to me.

"Pulled plugs" have been my recurring theme this year. I have learned over the past year not to make any real plans because usually they must be cancelled or aborted. I have come to see a pattern in Michael's mental and physical health. Whenever something out of the ordinary is looming, like a planned trip out west to see my sister or a carefully planned day-trip to Montreal for our daughter's graduation, Michael starts to slide into a serious mental health crisis often accompanied by alarming physical symptoms. All must be abandoned. When this same daughter made plans to travel to Indonesia in August for a four-month teaching contract, he went into sharp decline again and had to go to hospital twice that month with very serious consequences, as you might remember. When she asked if I thought he might be upset and worried about her leaving, I had to admit she was probably right. But when she offered to cancel her trip, I told her she must go. I had long ago resolved that the children's lives must carry on as normally as possible. It is not their place to put their lives on hold.

I have no proof, of course, that this is what caused August's melt-down, but it does seem to fit this pattern I've now seen repeated many times. He has no control over it, of course. Having made this connection, I now know how to try and avert disaster, partly by never planning anything that might upset him, which means most things I might want to do. But some things are unavoidable. As I wrote in a recent entry about Christmas, I was uneasy about how he might handle a houseful of boisterous family over the holidays. I was very vigilant for several weeks before their arrival and did notice a significant slowing down of his bowels, always the first sign that he is struggling quietly inside. I administered the occasional laxative and was conscientious that there should never be more than two days without action. Despite my interventions, everything did come to a grinding halt for him in that department over the three days everyone's visits overlapped. But I was able to get him back on track soon after, probably because the house started emptying out and he began to relax.

We have a big event this summer that has me worried he might pull the plug on this too. One of our daughters is getting married and our plan is to host the event in our own backyard. An event anywhere away from home would mean limited participation by her parents since Michael cannot endure any lengthy event away from home or away from me. This way he can, I hope, retreat to his room if he needs to but can at least see his daughter married and maybe even partake in the wedding supper. It will be a very simple affair, but it will mean a fairly large gathering, the likes of which he hasn't experienced in a long time. I will try to plan for every possible eventuality and not be shy about administering calming medication if necessary, but given his fragility, a melt-down may be unavoidable. He remains the wild card and could scuttle the entire event.

Many have suggested I consider placing Michael in a nursing home now that his care needs are so extreme at times. I have investigated the possibility but have come to a decision, at least for now while I still enjoy good health and strength myself. To take Michael out of his home, which is the only place he can be calm and happy, would mean the end of him, I am certain. I would be effectively pulling the plug on him, and for now, at least, I cannot live with that. As long as I can cope and remain healthy, he will stay at home but will have to endure the occasional shake-up of his otherwise quiet, calm existence. Things like family visits, dinners with occasional guests and even a wedding have to happen if I am to remain sane. We may experience some serious turbulence at those times, but, with careful planning, perhaps we can avert disaster. I have resolved that as long as he is happy at home and I continue to be his solace, all this I can endure. The moment I permanently become unknown to him and maybe also become the enemy, that will be the time to reassess, and plans are already in place for that eventuality. If home becomes alien to him then it won't matter where he is or with whom.

In the meantime, I will have to allow myself the occasional tantrum over pulled plugs.

"Skating away on the thin ice of a new day" *

Canadian winters are particularly difficult for the disabled unless you live on the balmy southern west coast of this country, but even they have had their fair share of cold and snow this year, effectively paralyzing unprepared cities like Vancouver. Ours here in eastern Canada has been mercifully mild and dry so far, but then it is only early January and in a country where winter weather can occasionally strike as late as May, it is too much to hope that this might actually be the trend this year. If there is anything I've learned about Canadian winters it's that there are very few trends beyond cold and bloody cold with usually buckets, but sometimes truckloads, of snow thrown in.

But we in this household, at least those not responsible for the removal of snow and winterizing the family shelter (which is everyone but me), used to eagerly anticipate the season's harsh blasts. Winter means skiing on local hills, skating on Ottawa's lengthy canal, and, above all, hockey and a backyard rink.

Our first backyard rink was lovingly crafted by Michael back in 1984 when our eldest child was only three. We had bought her those little skates that one attaches to the boots of small children. They have two "blades" but really are just pretend skates to fool children into venturing out onto that slippery stuff they can't stand up on. One can never learn to skate in those things, just stand up, if you're lucky. But our little Anna tottered out onto her very own rink, a mere 4'x6' little space on which she'd have been hard pressed , even if she could skate, to gain any speed and momentum before tumbling headlong into the surrounding snow. I can accurately report she did NOT learn to skate that year.

For the next few years, while we lived in the heart of the city, Michael gave up on future rinks in our too-small backyard and instead we made many forays to the famous Rideau Canal in Ottawa, an eight kilometre long skating rink cutting right through the centre of the city. I remember many a romantic late-night skate with my new husband back before children, and even after the offspring began to arrive, we still made time to go with the kids, or even without on the occasional lucky night out (It's one activity we both felt our children should learn given how much pleasure it gave both of us). Often there was a baby bundled into a stroller but our first child seemed born to skate, just like her dad. No stroller for her. By age four she could skate the entire length of that canal like a pro and even conned her uncle into sponsoring her in a fundraising skate-a-thon one year. He foolishly pledged an enormous amount per lap thinking there was no possible way this child could skate THAT far, and he ended up forking out a rather large sum of money to a very smug little girl.

Our next rink didn't materialize until after we had moved into our current home that sits upon an enormous acre lot on the outskirts of the city. But given the constraints of Michael's work and domestic duties (and, now I realize, the quiet but inexorable progress of his disease), there was little time to really devote to this all-consuming task. There were one or two over the first years in this home but generally the learning-to-skate duties fell to me who homeschooled these four children and spent the most time with them. I discovered local arenas that offered free skating twice a week throughout the year so that became the biggest part of our phys-ed programme. Often we were the only visitors and had the entire arena to ourselves. We happily did laps to lousy pop music, and races were held up and down the ice. Anna practised figure skating moves she'd taught herself. We almost always hit the doughnut shop for treats afterwards.

None of our kids ever had a single skating lesson, my approach being more from the sink-or-swim (skate?) methodology books. But they all learned to skate, some better than others. I skated for so many years pushing one child then another in a stroller on the ice, I was worried that when the last one grew wings on his feet I would be incapable of standing up without the comforting support of a child in a stroller. I was never as confident as my husband on skates.

It was once our youngest child, our only son, began hockey and became an addict like his dad that the real devotion to the backyard rink began. With a vigour and enthusiasm heretofore unseen for this task, Michael would start to plan the rink as soon as the snow started falling, spending hours packing it down, perfecting strategies over the years for flooding and creating the ideal rink which, of course, was always subject to the vagaries of the weather. Every year it expanded as the youngest grew into a more confident hockey player. They would spend hours out there passing the puck and taking shots on goal (we have a full-sized hockey net, of course). One year our son laboriously painted wobbly lines on the ice with his little paint box. Only a few years ago we spent far too much money on a "Zamboni" made from sewer pipes, towels and an attachment for the hose; it actually works. Dedication was complete, nearly a religious experience.

Over the years the disease wore my husband down and the task became too onerous. He would try but couldn't really carry through because physically and mentally it was becoming too difficult. Confusion had taken hold of his brain, making the planning and execution impossible.

But a wondrous thing had happened in the years that father and son had worked side-by-side on this shared passion: our son had learned the family business and started to take over. There were a couple of difficult years as the baton was being passed, while Father came to terms with his interfering disease, demoting him to support staff, and Son took over as the Boss, making all the decisions about the construction. Finally, Michael seems to have accepted his subordinate role and is simply happy to contribute.

This year the rink construction began just before Christmas, but with our son's busy work and social life, it wasn't looking terribly hopeful that this project would take off. I questioned why he had even started, given his limited available time to devote to it, but his response hit a chord with me. He assured me that really it didn't matter if it was ever completed. What mattered to him was the process and how much he loved it. This I realized was true of his father who seemed so much at peace engaged in this rather Zen-like activity. A perfectly finished rink was just a bonus, not necessarily the goal.

I realized another thing too. Our son's initiative this year has been a gift, something for his dad to enjoy. With all the drama surrounding Michael's health last winter combined with unfavourable weather conditions, the rink never got started. With winter now upon us, Michael has become almost completely house-bound and unwilling to go anywhere. The effort seems just too Herculean. He spends most of his day dozing on the couch in front of the television, and when I ask if he'd like to go outside with me, he nearly always declines. But as soon as our rink got to the point where it actually looked like more than just packed down snow, there seemed to be a renewed interest in the outdoors. Every morning I prop him up in his hospital bed, fling open the curtains and let him see through his window to the backyard. He quietly assesses the progress our son has made overnight, most of the work being done very late after all have gone to bed as his dad used to do in the good years. In the afternoon when Michael is at his best physically, I find him pulling on his boots and coat preparing to go out and have a look. He inspects the rink for the weak spots that need extra attention and then, with my help hauling out the hose for him, he sets about flooding. He falls all the time, every few seconds in fact, but he is undeterred. He pulls himself up on the ice, no easy feat for someone with advanced Parkinson's disease, and carries on, usually in a rather haphazard, confused fashion but who cares? I am vigilant at the living room window, seated at a table and pretending to type on my computer; I don't want him to think I am really just keeping an eye on him. When it looks like he can no longer carry on I suggest he come inside before he seizes up completely. His pants are drenched from the many falls into the unfrozen water and his back is obviously hurting but his cheeks are flushed with fresh air and pleasure.

I miss skating with my husband. After he left work disabled in 2003, we would seek out those same arenas I visited years ago with our kids, this time for seniors' free skate. On a good day he might last about fifteen minutes before collapsing with exhaustion. For the first time in our lives together I had become the better skater, a distinction I'd rather not have. Now he in his advanced condition and I still fearful after breaking my wrist skating on the canal two years ago, we will probably never skate together again.

But I can help him in small ways to get out and happily lose himself in a few minutes of rink-building. And perhaps he'll even strap on those skates again this year.

(* from Jethro Tull's "Skating Away")

Bittersweet

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.

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.

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.

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.

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.