Ringing in the New Year

Three a.m. I am awoken from a deep untroubled sleep, a sleep that until recently was a rarity.  I was about to make a world-changing speech, on what I cannot remember, but the dream was probably inspired by Johnny Depp in the movie "The Libertine", a 17th century period piece where he plays John Wilmot, Earl of Rochester, who both saves (with a brilliant political speech) and threatens to ruin Charles II.

The watching of the movie to bring in the new year was an executive decision on my part. NO MORE HOCKEY. A friend had loaned it to me and it was a good choice. What movie with Johnny Depp isn't a good choice even if, towards the end of this film, his face and body are ravaged with advanced syphilis? He was a libertine after all.

We did not ring in the new year the conventional way by propping open our eyelids until midnight and toasting the occasion. No, a normal boring night for us, but I had a new eReader to look forward to in my room.  So with Michael safely tucked away, I indulged in a new book, drifting off to sleep well before midnight.

Then the clanging began. Not the pealing of bells but the din of metal on metal, Michael's whistle hitting the metal bed frame, an overly efficient means of summoning my help.

I dragged myself downstairs to see to his needs which at first seemed unclear. He was rubbing his abdomen and then was able finally to tell me he needed to use the toilet.  There was no way I was going to be able to get him into the washroom safely in his by now frozen state so I hoisted him up in bed and readied him for the commode, situated conveniently right next to his bed.

A bit of history: For ten days, Michael suffered a particularly stubborn bout of constipation, spanning the entire week before and well into the week after Christmas. It is often his way when anticipating any change in his routine but this was worse than usual.  It was becoming very alarming especially since I had resorted to powerful laxatives and even, in desperation, an enema on Christmas Eve (yes, we have unique ways of celebrating the holidays in our house), all to no avail. I was putting off calling the nurse to come and administer the garden hose of enemas. No exaggeration. Well, maybe a little. I'd wait till after all the kids had left, as much for his own privacy as respect for their sensibilities. Besides, despite the slow down, he continued to eat. In fact he packed away a pretty impressive amount of food on Christmas day, all without any discernible discomfort. I was marvelling that all the measures I had taken were so ineffective.

Or so I thought.  Apparently his body was just waiting for an opportune moment of quiet, which is a very rare commodity in our house over the holidays.  One afternoon, when only the two of us and the two sympathetic dogs were at home - Wednesday, I think - the action began. I can tell you over the days between Wednesday and last night, he more than made up for ten days of inactivity.

But apparently not completely. Three a.m New Year's day was the Mother Load. Once I woke up enough to take in the whole situation, I couldn't stop laughing. Nor could he, despite his discomfort and Parkinson's rigidity. What else can you do at three in the morning when faced with a very large offering of human waste?

I'm taking this as an auspicious sign for 2012, an emptying out of the bad of 2011. A bit like rain on your wedding day, is how I'm looking at it, but a tradition I'm not wanting to become established.

Happy New Year. May you all begin 2012 as cleanly as Michael. Out with the old; make room for the new. Clean slate. Tabula rasa. Empty vessel.

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.

Ennui

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

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

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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.