Blog Farm

The Blog Farm

Wednesday, February 16, 2011


It's late.  Boredom exhausts but sleep eludes.

A day without respite. A usual Wednesday with the day's only plan to get in a workout and get through the day. Success at least on that front.

Television tyrannized my attention. Three meals created welcome structure to the day.  Michael loves to eat and only left his couch-bed to do so and heed the call of nature.  All my senses acute; couldn't bear to hear him chew. Focused all my attention on the paper's daily puzzles. I knitted a few desultory rows but the television aggravated my mood. Edgy. Hustled him off to bed promptly at ten to escape to my room.  Felt like confessing that I've had enough but knew my words would wound even if only for a moment and then be forgotten. The response is always silence when I unload my heart.  I pray for conversation but there is no point in wasting words; I don't anymore.  Instead loud wailing to God, the silence, the darkness but no response either.

Yet writing these words, seeing them form, brings lightness. Imagining a world beyond the screen. Yawning,  I think I can sleep.  Tomorrow will be better.

Sunday, February 13, 2011

Playing with Fire

I conducted an experiment this week and it failed. At least I think it did.  Not spectacularly or catastrophically, just quiet failure, but it was worth the try.  I had been giving this decision much thought and felt we had nothing to lose.

Some time ago I wrote about the newest drug in Michael's arsenal, Clozaril.  It is a powerful neuroleptic drug used to treat stubborn cases of schizophrenia and patients with Parkinson's Disease where dementia progresses to the point of deep psychosis.  It is a dangerous drug and only used in difficult cases because of the many serious and not-so-rare side effects, but it is indicated for Parkinson's patients because, unlike many of the other drugs in this family, this one is less likely to cause tremors or exacerbate existing ones.

Michael has tolerated the drug very well, passing his weekly blood tests that monitor his white blood cell count, a test ordered by the drug company in case of the fatal occurrence of agranulocytosis, which, very simplistically, is the destruction of those important infection-killing cells leaving the patient very vulnerable. And he has experienced very few of the other nasty side effects.  On the whole the drug has been successful and Michael has been very well the past few months.

But, since the fifty percent increase in this drug last August when he lost the connection with his world during a hospital stay, he has been more lethargic than ever. He rarely moves off the couch these days, not because he cannot but more because he simply lacks the will.  He sleeps a lot and is more withdrawn than ever except for occasional moments when friends visit.  For those moments he seems able to rally all his resources, physical and mental, surprising his guests who expect to see him in the near-zombie state I often see. (Could thirty-plus years of marriage be the real culprit?)

I am not complaining about the new calm that has settled over our lives, but, as the caregiver and always trying to figure out ways to improve his life, I have become worried about this immobility and the implications for other aspects of his health, such as his cardiovascular system that has already shown itelf to be compromised, and his musculature which is rapidly atrophying.

On thinking this through I jotted down these observations: Michael's psychosis is triggered by internal or external changes in his condition - constipation, urinary tract infection, a planned trip anywhere - and Michael's plunge into psychosis does not seem to be prevented by this drug when he does experience these changes. Ergo, perhaps the drug is not necessary, and the anxiety that bubbles up as a precursor to full-blown psychosis could be controlled by the other anti-anxiety medications I have at hand.

I had been thinking about this for weeks, probably because I miss my husband whose chattiness and sense of humour were always such good company.  I haven't seen much of this man for a long time, I admit, well before the introduction of this drug, but he has gone even further away the past few months. So I decided, without consultation I confess, to pare back to the pre-August dosage which meant keeping the full 25 mg pill at night but not the more recently introduced half pill in the morning.  My logic was that he might have more energy and less lethargy during the day but still have that nice hit at bedtime to see him peacefully through the night.

Wednesday was the morning for the first missed dose.  Coincidentally it was also the morning for another task I'd been avoiding for weeks.  Though I am conscientious about my own health, popping various immune-boosting remedies when the first sign of a cold strikes or just maintaining good nutrition and exercise so that I almost never get sick, I had to admit there was no home remedy for deteriorating eyesight and no substitute for the occasional visit to the dentist. So Wednesday was the day to book all those long-neglected appointments for myself and while I was at it, I thought I might as well book a dental appointment for Michael whose rapidly deteriorating teeth have been neglected since his care needs escalated back in November 2009.

There is a reason for my reluctance to visit his dentist.  Five years ago, Michael underwent a routine root canal and at the time seemed to tolerate the procedure well. That evening he suddenly fell into a delirium we'd never seen the likes of before but with which we have since become all too familiar.  He had his dinner, then started picking up invisible objects from the floor and pointing to and communicating with an invisible crowd in the living room.  Not much later he fell into a frighteningly heavy sleep.  I had no idea what to do so did nothing but wait it out, which, knowing what I now know about this disturbing condition and how it responds to hospitalization, was the best thing I could have done.

Since life has been so stable lately, I thought it was time to address the dental problems. As it happened, his own dentist could see him that afternoon.  It was a free day (it almost always is) so I agreed to the visit which was just to be a cleaning and a check-up.  I did have a moment of doubt that perhaps I should wait a day or two to see how Michael fared with the new drug schedule but then quickly discounted that and threw caution to the wind.

Anxiety almost immediately kicked in on learning of the appointment but did ebb away as the morning progressed.  I assured him nothing much would happen that day.  Even so, the visit was a bit challenging as he choked a lot through the cleaning process, but the hygienist was very patient and propped him up every few minutes to clear his throat.  The only visible sign of anxiety I could see were his clenched fists but he declared he was fine whenever I asked.

The dentist decreed that one badly decayed tooth that had recently lost its capping would have to be extracted and two others filled.  The extraction might be lengthy if the tooth broke in the process so it could mean up to an hour in the chair.  I decided not to book the appointment immediately but wait a week to see if there was any fallout from this simple stage of the process.

I anxiously monitored his behaviour throughout the evening but there was no recurrence of the post-procedure delirium of five years ago, just a bit of agitation, nothing that couldn't be handled with a mild dose of anti-anxiety medication.

All was well the next morning, day two of the reduction campaign.  Michael was noticeably more alert, more mobile, more communicative.  Things were looking good; my experiment might be a success.  But later in the day, some old symptoms reappeared.  The nagging ache in his upper right abdomen returned which might be explained by the slowing down of his digestive system again over the past few weeks (the flax continues to work but less well than at first, forcing me to reintroduce small doses of the drugs) but I think it was a symptom of anxiety.  More medication.

On Friday, day three, he was even more alert,  That afternoon dear old friends dropped by for a most welcome visit and Michael was better than ever, partly because of the reduced drugs but mostly, I think, because of the happy visit.  He joked coherently, making us all laugh.  I was feeling happy and confident that my decision was right.

But Friday evening things began to change.  The haunted, hooded look that crosses his face as the pre-cursor to psychosis had appeared.  I asked him how he was feeling and for once he was able to give me a fairly detailed response.  He said he felt so much more alert and clear-headed and enjoyed being back in the world but he recognized that the Darkness was approaching.  An odd phenomenon I have noticed is that extreme delirium is always accompanied by increased mobility and intellectual activity.  That's what I was seeing on Friday night.  I asked him if he wanted to continue the experiment with the reduced medication and I could see he was torn, enjoying the renewed lucidity but afraid of going down that dark alley again.  I realized I was too and I lost my nerve to continue.  There is always the fear he may not find his way back the next time.

So today, day four, I resumed the full dosage of his Clozaril and he sank back into lethargy and calm.  I also cancelled the appointment for the tooth extraction because he had become quite fixated on that. It can wait. It is difficult to say whether the increased anxiety was a result of the drug reduction or just the anticipation of the dental procedure.  It is unfortunate that I allowed both to occur simultaneously because I will never be sure what was happening, but I am certain that with the significant increase in the anxiety and the wild look returning, it was too risky to continue. Obviously I cannot have both a lucid and calm husband. We are opting for calm.

Sunday, February 6, 2011

"Perfectly balanced variation within sameness"* OR How to Survive the February Blues

It's February and it's a Saturday morning.  On the one hand I want nothing more than to curl up, read a book or lose myself in a long movie or two, my lethargy is so huge.  On the other, it's a sunny, sparkly Saturday and, with the fat weekend paper spread out before me and my cup of tea, there seem to be endless possibilities to the day, if only I had the energy and a different job. Restless, yet enervated. Bad combination.

This is not a new state of being for me.  For years I have battled mildly low spirits at this time of year. Who doesn't?  The darkness is long even with the slight increases in daylight every day. The days are cold, triggering that hibernation instinct that most of us experience, save those who embrace winter sports. I do not anymore; I cannot with the restrictions Michael's care imposes.

But there are strategies I have found that work. These I have employed since the kids were little and often sick through the winter months, and then again through the long years we homeschooled, though then we were always very busy and active with little time for low spirits.

Routine is critical for me, but at the same time that unwavering routine that is so imperative for Michael's health can be oppressive.  Every day his medications, dispensed five times a day, are administered with clockwork precision.  The eighteen pills a day are essential if Michael is to have any hope of mobility or lucidity, but at least he takes fewer now than the thirty-plus a day of recent history.

Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night,  I lift him up in bed, clean and dress him, none of which he can do on his own anymore.  I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there.  When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.

Afternoons are usually not much different.  He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep. 

These routines, in the comfort of his home, keep Michael on an even keel mentally.  Any change can spell catastrophe without extreme vigilance on my part. Sometimes I don't know what the change might be because it is something silently and mysteriously lurking within his own body, my only clues being his mental state and the state of his bowels, accompanied by much guess work on my part.

So I have had to develop my own strategies for remaining sane in the midst of these rigid  routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed.  At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship.  Reading is otherwise difficult during the day with the constant drone of the television.

Every day I try to  have a plan of action that I review in my head each morning.  If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families.  Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.

As long as I have one thing planned I am content.  I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.

I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out.  I take immense pleasure in keeping house, something I am nearly shy to admit.  I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing,  dusting and dancing with my partner the mop.  Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.

Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.

I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street.  I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.

I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him.  Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.

I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.

Sleep, of course, is  essential to good health and good spirits.  These days I am getting plenty, but I am always aware that could change in a heartbeat.  With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders.  I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together.  It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.

After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme.   Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises,  I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life.  Did I say monkish?

I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different:  Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.

This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned.  In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done.  In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.

So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.

* from Lionel Shriver's "The Post-birthday World"