Playing House

I am in love with Michael's doctor. No, not that kind of love. I barely know this guy, Michael's home-visit doctor, whom we see at most twice a year with occasional phone consultations between visits.

I rarely make direct contact with this fine fellow when I call. Usually a message must be left, then I wait anxiously by the phone, sometimes days, while some new, often mysterious development in Michael's condition unfurls. I only ever call when it is something serious. Otherwise I'd be on the phone daily which wouldn't be right, as much as I would love to have someone to bounce off my theories and concerns all the time.

The anticipation I feel over that awaited call is akin to the nervousness one might feel listening for some adored boy or girl to finally call. I get nervous. I want to choose my words well and get my message across clearly.

Lately, Michael has stumped us again.  After early weekend bouts of heightened anxiety and lunacy that saw him parading around the house naked, brandishing a magnifying glass with which to shave his face, he then developed an odd pain. On Saturday morning he started grimacing wildly and grabbing his left arm, very obviously in extreme pain.

Of course, my first thought was heart attack so I battered him with questions, most of which got no more than a garbled, uncertain response: Is there chest pain? Are you anxious? Do you feel any discomfort in your neck or jaw? As always I had to rely on the visual clues alone and they were minimal. From what I could observe there was no increased anxiety; blood pressure was usually normal throughout the frequent attacks; no sweating; no chest pain; no shortness of breath. It seemed to be simply a violent muscle cramp that occurred randomly throughout the day, even waking him on occasion from a nap. In general, I dismissed a cardiac event and favoured a sore muscle from an unwitnessed injury, perhaps a fall.

But as the days wore on and the pain increased, starting to interfere severely with what little mobility and balance he has, I began to formulate more theories.

Could this be something like spinal stenosis, a condition I watched my poor mother suffer through that caused her much pain in the left arm, then finally the total paralysis of the once useful limb?

Perhaps this was a side effect of the new drug Motillium. Dystonia, the term for severe muscle spasms, is a rare but not unheard of complication with this drug. The pharmacist I consulted yesterday even suggested that the combination of this drug and the neuroleptic drug Clozapine might be the culprit. I gave one extra dose of Clonazepam, the anti-anxiety/muscle relaxant drug Michael takes nightly and when needed. This was a strategy recommended for dystonia on one website I consulted. I also gave a dose of Tylenol on another occasion, hoping to alleviate his pain.

But when things were worsening yesterday, now the fourth day, and nothing seemed to be working, I placed two calls, one to the neurologist who had prescribed this drug, the other to Michael's home-visit doctor.

The second doctor so far is the only one to have checked in. My relief when we finally made a connection today was huge. We chatted like colleagues for about fifteen minutes, throwing theories around. I appreciate being able to discuss Michael's case with someone who knows what I am talking about but who is, at the same time, quite willing to admit to head-scratching puzzlement while listening respectfully to my input. Together we worked out an initial strategy to gradually reduce, but not yet eliminate, the Motillium to see if that helps. If not, then part two of the plan is to embark on a very low-dose, slow-release nitrate patch just in case this is a bizarre manifestation of angina that is not following the text book description. Rapid plummets in blood pressure, as you know, are already a dangerous complication of this disease for Michael so we must be careful not to exacerbate that problem.  The doctor asked if a trip to Emergency might be in order, but when I reminded him of the serious consequences of the inevitable long wait for treatment only to be dismissed after perhaps days of tests, all with Michael rapidly and wildly spinning out of control, he agreed to keep him home for the time being.

The phone call buoyed my spirits. It felt like we were playing House. Not the domestic variety but more that insanely implausible television show "House" with Hugh Laurie (whose zaniness as the aristocratic British twit Bertie Wooster still looms large in my head) as the crusty, irascible Dr. House. Every week this character faces a complicated medical mystery, then spends much of the episode consulting with a team of about six doctors, even sending out sleuthing hospital residents to a patient's home to uncover medical clues, finally revealing a miraculous solution within sixty minutes. AS IF. Our version of collaboration is almost as implausible to some, I suppose, though, unlike the fiction, we have no guarantee of ever gaining any insight

I am feeling very supported and only realize how lonely this job is when I do finally have someone to talk to frankly about my husband's mysterious and complicated condition. This doctor/caregiver/patient relationship feels more like a comfortable partnership, a rarity in our otherwise top-down medical approach to patient care. I love this doctor.

*Hugh Laurie as Bertie Wooster and Stephen Fry as Jeeves in P.G. Wodehouse's "Jeeves and Wooster".

Springtime, Submission, Serenity

An emergency car purchase. Wedding plans. Our first offspring to be purchasing a house. Mild family tensions. A normal week.

I've forgotten Michael's regular doses of medication twice recently. He nearly escaped on me once WITH the keys to the new car in hand.

He has responded well to the new medication. Blood pressure seems to have normalized and the bowels are working well. In fact, all round he is physically better, thanks to Motillium, with more energy and more mobility. A great success so far except in the cognitive department. If anything, that has worsened which makes the increased mobility a bigger concern; with the nicer spring weather, get-away is that much easier and that much more enticing. And I'm out of practise after his winter of nearly complete immobility and lethargy. My Michael-sensors are dulled.

But on quiet reflection, I am happy, despite slightly diminished attentiveness. I think, after two-and-a-half years of this intensive care, I have finally reached a level of contentment with this job. No longer am I bristling for a sign - any sign - to indicate the future path of Michael's disease.  I have learned to be content with and submissive to whatever might reveal itself, however long it takes to play out. I have accepted that this is my job for the foreseeable future; I am no longer wishing otherwise.

I am very lucky: I am healthy. No financial worries. A beautiful home and community. A loving and concerned family and group of friends. Tremendous support from the social and medical services that allow fourteen hours of respite per week and medical care for Michael at home when I need it, all at no cost to me. Friends drop by regularly for cups of tea. The telephone rings and laughter often fills my day. I have even summoned the courage to take Michael out to visit my brother one afternoon recently, an activity I could not have attempted a mere month ago. I am entertaining thoughts of taking him farther.

I am my husband's keeper but when his time comes to leave us, whenever that might be, my sister appeared in a dream two nights ago as if to reassure me that the burden will be taken from me and Michael will be in good hands.  She stood before me, arms outstretched for an embrace, my husband standing behind her, protected, awaiting her. Every time before now that I have worried about a dying family member, my dad vividly appears with that person in a dream to assuage my concern. Though I awaken saddened, I am always comforted just as I was this time, my sister taking his place.

We approach the anniversary of my sister's passing coinciding with my mother's birthday, then the next day a Nearly New Sale weekend along with the most holy time in the Baha'i community. It will soon be Ridvan, a time for joy, reflection and celebration.

Facebook Follies

Facebook has become my friend, virtually linking me, often in real time, to my true flesh-and-blood friends. I check it frequently for updates on people's lives. I enjoy their news and the many links they provide; some educate, most simply entertain. I often laugh at silly videos or I am moved to tears, over a beautiful musical contribution, or contemplation over a thought-provoking news clip. It is sometimes this shut-in's only connection to the outside world.

Recently a friend shared a short video that tickled my fancy. Entitled "How to Piss off a Frog", it showed the hand of a young woman holding an iphone in front of a large frog. On the screen of this device were many virtual flies moving about. The frog could obviously see these creatures because he tried repeatedly to zap them with his tongue, unsuccessfully, of course. What made the video so funny was at the very end when the cruel human in this story reached out her finger, only to have it nastily attacked by the annoyed frog. Poetic justice.

Facebook allows me to "share" these little tidbits on my own page, which really amounts to a virtual bulletin board for all of my friends to see. Whenever there is an interaction with someone, I am helpfully notified on my email account, just in case I hadn't bothered to check in on Facebook that day. A foolproof system so you never miss a message.

Wednesday was a day like any other; my email account announced several interactions.  One stood out and startled me.  I hadn't heard anything from this friend in well over a year. According to the announcement, he had apparently shared my frog video. This struck me as very strange so I decided to do some sleuthing. There was no record of this video on his own Facebook page as there should have been if he had actually shared it. There was also no record of the encounter on my own page, as there always is.  I double-checked the email address to be certain because my heart was racing now with a mystery. Yes, it was the Facebook notification address, the same that always appears with every announcement. Even though I know my friend would have enjoyed this silly little joke, it could only be some kind of cruel joke or some technological glitch in the system. That must be it, I reasoned with myself, even though I wanted to think that somehow this friend had seen my humorous little contribution and had had a good laugh.

But, you see, that can't be possible.  Milan has been dead for over a year. Facebook in heaven? Icloud?I'd like to think so even though I know the more mundane, prosaic explanation is probably the correct one. My shock worn off, I've been smiling ever since and refuse to erase the evidence of his "activity" from my email. A whole new dimension to my circumscribed life. I should connect with Mark Zuckerberg, Mr. Facebook himself; I wonder if he knows.



*"Have a Good Lunch" by Domenico Salvagnin

The Motillium Cotillion

Another drug, another dance.  This one conjures up images of grand Southern balls, its generic name, domperidone, the fancy wine one might serve at such an event.  They are the names for a drug newly prescribed to Michael. Its general use is for stomach disorders, to increase motility of the gut - hence the cute name Motillium - and to reduce acid reflux.  It has also been effective increasing breast milk supply in nursing mothers, a use I frankly find rather frightening.

So you might be wondering why on earth this drug might be at all appropriate given Michael's definite maleness and lack of acid reflux as far as I am aware. It has ostensibly been prescribed to level out the extreme low blood pressure moments Michael has been suffering. This drug has been found to be effective treating this problem in late stage Parkinson's patients who are suffering the effects of dysautonomia, the degeneration of the autonomic system, characterized by erratic blood pressure, urinary and bowel disorders, breathing problems, sexual dysfunction, all of which have afflicted Michael. How this drug will work on the blood pressure is a mystery to me, but perhaps by increasing the motility of the gut, somehow the entire autonomic system is improved. I am once again reminded of the connection of all things and in this case, another clear example of the stomach being connected to the heart being connected to the brain.

But that is exactly the case. The human body is a miraculous array of systems all closely linked to one another with the brain acting as the control room.  It turns out that this drug is a dopamine agonist, something which promotes the body's effective use of dopamine, a neurotransmitter or a chemical released by nerve cells to send signals to other nerve cells. In Michael's case, he takes a synthetic version of it, Sinemet, to replace his own diminishing supply. Increasing the availability of dopamine to the body should improve all the impaired systems that Parkinson's so ruthlessly destroys. At least, that is how my untutored, unscientific mind is managing to understand it.

However, with every new drug, no matter how effective it might eventually be, there comes a period of adjustment as Michael's own individual response to the drug manifests.  From the list of the possible side effects for this drug, nothing seems too alarming. It has been used fairly safely for many. But I have learned that Michael is now in a very fragile state and even a minor change, internally or externally, can unhinge him mentally. So the addition of anything new can launch us into a wild dance as we figure out the new steps together, his body definitely leading us.

It took me an entire week to fill the prescription, my doubt was so great. Then last Friday I stood up from my position with my back to the wall and engaged in the dance. But I started slowly. The prescribed amount is a 10 mg tablet three times daily. I cut the small white pills in half and gave only two of those the first day. There seemed to be an almost immediate reaction. He clutched his gut a few hours later and that haunted, maniacal look returned. Later in the day he complained of pains running up the outside of his thighs. Neither of these complaints might have been caused by the drug, but to be careful I gave no more that day.

The next day I gave three half doses and didn't tell him I was doing so after his adamant refusal the day before to continue its use. There was nothing untoward the rest of the day. Ditto for Sunday.

Then last night he awoke anxious and perturbed, summoning me with our low-tech system, that raucous clang of metal-on-metal I have come to dread.  Middle-of-the-night summonses are jarring and unpredictable. When I enter his room, I never know what might be before me. Last night he was wide-eyed and panicky. Not yet 5 a.m. it was too early to declare the day open and I didn't want to give him a sedative unless absolutely necessary; I needed him awake at the usual time so I could meet my friend for our usual Monday morning walk and breakfast. I put his radio on for company and tried to grab a few more winks of sleep.

Well before 7 a.m. he was clanging again. He is never so fully awake that early. He looked tired but wide-eyed with near panic. With me up and moving around I thought he might relax and fall asleep but when it was obvious he wouldn't, I gave him his morning dose half an hour earlier and got him up shortly after.

The most amazing thing then presented itself. Michael, though looking haunted, was able to speak in full sentences. He got up, stretching and moving around in the most normal way. And he was pretty frisky and amorous, catching me off guard. He was delightfully back. I was tempted to cancel my plans just to enjoy a cup of tea and a possible conversation with him but I also know that these little miracles are usually short-lived so I left him in our caregiver's capable hands and skipped out the door.

On my return, he met me at the door, pointing to his heart and gut. "We have to go to the hospital," he declared. He thought he was having another heart attack. I knew otherwise and calmly told him so, reminding him of the horror that hospitals represent to him. I shuffled him off to the couch, took his vital signs (blood pressure was very high), gave him an anti-anxiety pill, then curled up on the couch with him for a nap to catch up on my own lost sleep. Within an hour he was back to normal - old normal, not the lusty, verbal, morning guy who quite likely could have swept me onto the dance floor if I'd stuck around.

So our dance will continue as I gradually increase the drug up to the full prescription. This morning's brightness was a good sign but it also hinted at an increase in the wild mania we've encountered before as more dopamine is made available to his body. Then the decision will be to chemically straight-jacket him again by removing the drug or to endure the mania with the increased mobility and awareness, a dance I am all too familiar with and hate. I know the doctor's response to the latter problem would be to increase his anti-psychotic medication, piling up more drugs and returning him to a dopey state, probably cancelling out the benefits of the Motillium.

At some point someone has to call an end to the party.

*Ramon Casas, Bal de Tarda, 1896.

D-Days

Dementia. Dyskinesia. Dysautonomia. These are the words of Parkinson's Disease looming large for us these days.

A visit to the neurologist to discuss recent events left me with disquieting, disturbing, divided feelings. The odd spell Michael experienced at breakfast one morning two weeks ago, when described to two different doctors this week, elicited two disparate theories: one suggested seizure, the other a low blood pressure attack. Neither was present at the time of the attack, of course, to offer a proper assessment, nor is Michael well enough to undergo any diagnostic testing beyond the basics. Medication for the latter theory was prescribed, though yet to be administered as I struggle with doubt and fear that this drug might exacerbate Michael's tendency toward very high spikes in his blood pressure at times, the erratic highs and lows apparently characteristic of the dysautonomia in advanced PD patients but could also be explained by his longstanding, underlying heart condition. I am also not convinced this event was just a low blood pressure moment, especially since the reading, taken nearly immediately, was extremely high. I have witnessed many of his orthostatic hypotension events and this was nothing like them. More research is required before I can comfortably make that decision to start him on the drug and if I do, Michael will need careful monitoring.

Added to that concern this week a distressed friend confided dysfunctional family issues, revealing to me information I should not know. Further disturbance in my equanimity.

The troubled week was bookended by Death: a good friend on the first Sunday, my dear old aunt on the second. We had just visited the grieving family of the first death the day before and shed a lot of tears when Auntie Joyce's sad news reached us. Her death was not unexpected after she had suffered a massive stroke a month earlier, but sad nonetheless, especially for me since I was unable to visit her in England before she died and cannot attend her funeral. A kindly aunt to us, she was my last living blood relative of that generation. She will be sorely missed as will my friend who left this world far too soon at the age of 62.

So this week I am trying to take charge and dispel all the sad and negative energy generated and dominated by the D-words.  I am changing my vocabulary, refusing to acknowledge the hold they can have on us and keep us down. I am choosing instead to embrace the light that increases daily, to participate, if only in prayer, in the Baha'i fast that precedes the New Year on March 21st, a time of revitalization and joy. These are all issues of a transient life, after all, and how I let them affect me is up to me alone.

Break For Freedom

I am on high alert these days, nervous to walk out of earshot, my engine revving ready to bolt into action. Michael treated me to his most dramatic event yet, albeit very short-lived.

To comply with my new resolution to get away more, even if for just a day, I made quiet plans for a day-trip to Kingston last week to visit old friends; a four hour round trip with about four hours of lunchtime visiting. My caregiver had agreed to sit all day and conspired with me to keep it secret, not wanting to alarm Michael. There is always a struggle to know how much to inform him of my plans. If I say too much, he will instantly fall into an anxiety attack which usually sabotages my plans. If I say too little, he still becomes anxious when I do not return home within the usual three hours. That's what happened last week. When I wasn't home by early evening, his anxiety mounted, despite reassurances from our more-than-competent caregiver and a phone call to me on my way home. He required several hours of soothing hand holding, calming words and medication upon my return. His anxiety returned over the next two days whenever I left the house for my usual short errand-running spurts. By the weekend, he seemed back to normal.

Lately blood pressure has been an issue. In an effort to relieve him of the extreme lows he was experiencing, I very slowly, over several months last year, cut back on his cardiac medications except for the daily aspirin and Crestor, a drug to lower LDL cholesterol. Things improved. No longer was he having frightening near-blackouts on standing, causing him sometimes to fall more severely and with less control. He still had the occasional dangerous end-of-day spike in blood pressure, but no more than before the medications were reduced. On the whole he seemed more stable in that department.

Sunday morning, I had gotten Michael to the table with breakfast before him after helping him in the shower and dressing him, a twice weekly ritual. I had just walked over to the counter to attend to something when I heard sudden loud snoring. Now, Michael will often nod off onto his plate but never until well after he has eaten. I instantly knew this was not right.  I dashed to his side and was alarmed to find him with his head thrown back and slack jawed, unseeing, unresponsive eyes wide open, and this terrible noise coming from him, a noise I associate with the several dying people I have attended in their final hours. This is it, I thought, my adrenaline now in overdrive, my heart racing.

I held him close and called his name. No more than sixty long seconds later he "awoke" and seemed completely fine, as normal as Michael can be; his heart rate was stable; he could speak; he knew my name and his own: there was no chest pain, no weakness, no sweating or headache; in other words, nothing alarming.  When I asked him if he remembered what had just happened, he had some incoherent story about a fall, but there had been nothing of the sort that morning. He simply had no awareness of what had just befallen him, thank goodness. He happily ate his breakfast and life carried on as if nothing had happened.

The question I should not have been debating: Should I take Michael to the hospital? Of course, under normal circumstances that would be the right thing to do but, as you well know, Michael is far from the usual.  With all seemingly and quickly back to "normal" after this event, there was nothing really to report. No longer an emergency, a visit to the hospital with no discernible symptoms, beyond the many associated with his Parkinson's disease, would have meant hours of waiting to see a doctor who might run a battery of complicated tests, then come back two days later with a shrug of the shoulders and a dismissal. In the meantime, Michael would have spun out of control, probably attacking nursing staff and generally behaving like a vicious, frightened bear lashing out to defend himself from imagined assaults. Large doses of powerful sedatives would have been administered, security guards summoned, restraints put in place to calm the wild beast my husband becomes in hospital. At least that is how it has ALWAYS played out so far, with the situation worsening with every subsequent visit.

Instead, thinking he might have had a mild heart attack or a stroke, I gave him a handful (five) of baby aspirin to chew, a technique I have seen paramedics employ the many times they have been summoned to our house for a suspected heart attack. I also monitored his blood pressure.

We have a small digital device for that purpose. I'm never sure how accurate it is but if Michael has a weird reading, I measure my own right after as a kind of control.  I always get my usual reading in the low-normal range. This time the device emitted a code I had to look up: UU EE. Apparently that means the systolic reading exceeds 300, too high for the device to measure. I was so alarmed by this, I continued to measure his blood pressure throughout the morning. Soon after, well within the hour, it was down to 150/ 100. Within two hours it was completely back to normal, 120/80; by the next day down to low-normal, 90/60. Was the first reading a weird electronic error since his blood pressure seemed to reset to normal so quickly?

I have a call in to the home-visit doctor but still have to hear back from him.  I doubt there will be many words of wisdom.  To increase his medications will mean a dangerous lowering of Michael's blood pressure again. To subject him to cardiological tests will be nearly impossible given his present condition and inability to understand and tolerate such interventions.  With each odd episode lately there is further decline in his cognitive state, leading me to believe he may be suffering from frequent small strokes. Given that he suffered his first such event back in September 2006, it is entirely possible there have been many more unwitnessed episodes beyond the few I have seen. Perhaps the dementia he suffers is stroke related, what is called vascular dementia, rather than the dementia associated with Parkinson's disease. Or maybe a combination of the two.

A lot of questions. A lot of unknowns. As usual. In the meantime I nervously go about my business, afraid to leave him for even a moment. I am usually unflappable, stepping into ultra-sangfroid in the face of crisis, but this episode was different; this seemed to be the closest he has ever gotten to actually leaving me. My own heart rate took nearly as long as his blood pressure to stop racing that morning.

A nagging thought is that my happy day away brought all this on with the increased anxiety it caused. My next break for freedom down the highway will require a very calming deep breath before I can convince myself to set out. My foot will be hovering over the brake but wanting to stomp on the gas.

Lost in Winter

Out my kitchen window a lazy brown leaf floated by, left behind by its cohorts, lost in the wrong season. It was a slow motion flight from the tree with occasional happy little flutters when caught on a small updraft. Like a sun-sleepy butterfly, it drifted casually across the entire expanse of the snow-covered back yard until it finally came to rest in a nearby copse, settling with the company it sought.

I heard sad news yesterday that threw me back several decades. A woman who influenced my life greatly had died, belated news of this event finally reaching me. Rosalind W. Addison would have been 88 this year. A long, productive life had come to an end. She had been teacher, vice principal and headmistress at my all-girls' high school in Vancouver for most of her career, retiring long after I left. She was a formidable character, greatly feared, loved and respected; a woman of great fairness whom I came to appreciate the further away I got from that whole mildly traumatic time of my life. An old fashioned feminist who believed that women could achieve anything they wanted, though I'm certain she would have bristled at the label.

A small facebook tribute I paid elicited a response from a classmate. She reminded me that in 2013 we will be celebrating our fortieth class reunion and plans are already being whispered. I have never been able to attend past events - have never really missed them - but suddenly I wanted to go.

Excitement thrilled. I phoned the one friend from that phase of my life with whom I have stayed in touch over the years and who still lives out west. Three hours of conversation ensued, a small part of which was spent planning for this fantasy trip next year.

As I thought about the many people I could visit in Vancouver, I realized they all represent my early formative life, my springtime: childhood, high school, family and family friends, even university, all leading right up to the time I met and married Michael, embarking on my adult life.

My mind has been spinning with strategies for how to manage Michael's care for the week I'd like to be away. Of course I would fly, though I might need some serious pharmaceutical assistance for traveling by air on my own. I could not indulge in a slower means of transportation without robbing myself of valuable visiting time. Michael would have to go into a care facility for the time I'm away; I'm fairly certain not one single person would be willing to take on that task here at home. Would I put him in early, vainly hoping he might adjust while I'm still here to help out? Or would the swift bandaid-removal approach be best with no lead time? I have a full year to agonize about that, ample time to talk myself out of the entire project.

As I furiously researched hypothetical flights and accommodations, I realized that I'm seeing this as an endpoint to my current situation, and the joy I felt shamed me. But then perhaps that is a good strategy to give me the endurance I will need for the coming year; if I pretend that March 2013 is the end of my responsibilities, that I won't let myself think about life beyond that point, then maybe I can inject enough enthusiasm for the job to make it tolerable. I know in my heart I would probably return to a very seriously traumatized husband who would require an even greater effort to reset his equilibrium, but for now, I want this more than anything; I might be willing to risk it. I feel as though I am being given what could be the last opportunity to reconnect with all these people, to reset to my youth for just a few days.

Perhaps there is still some time to play, is what that happy little leaf seemed to sing. Vancouver, March 2013? Just maybe.

*Painting by Willard Metcalf - Winter's Festival, 1913