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

Dusty Brain

I have a cold. Nothing serious, just a mild inconvenience, but it has added to another problem we have faced the past few days.

You see, I sneeze. I sneeze a lot. Fortunately for those close to me, my colds are very rare, but this virus seems to be characterized by a lot of sneezing, even for me.  It began on Sunday with absolutely no warning.  In fact, I had been feeling rather cocky about my constitution of steel and was congratulating myself in the morning while I wielded my vacuum cleaner and danced around to loud music blasting through my ipod earbuds. Michael dozed on the couch, as always.

At first I thought it was the large accumulation of dust that was responsible, stirred from its slumber after a few weeks of a January slump, a slump I was kicking out of the house with a vigorous round of housekeeping and an energetic dance session. A new Jack White song was on a fairly continuous loop all morning. Why is it that testosterone driven music fits the housekeeping bill so well?

The sneezing began in the afternoon. Now, my sneezing is not one of my most attractive features. If I can ever be described as lady-like, my sneezes quickly dispel that odd notion. They are roof-lifters. And they are never expelled singly.  There is usually an entire volley of them, startling dogs, sleeping husbands, hidden spiders and any other creatures lurking in our house at this frigid time of year. They are almost as effective as the vacuum for ridding the house of unwanted life forms.

These sneezes are the most violent I have ever experienced, both for force and volume. They are terrifically satisfying too, bordering on orgasmic (hey, I take my fun wherever I can, folks). They are loud enough to wake the dead.

The dead, maybe, but not Michael. He seemed unusually unresponsive to my explosions. For weeks now he has been preoccupied with a right ear that seems to be plugged. Despite warnings to the contrary, he has been digging away at this ear in an attempt to clear it. Nasty, soiled Q-tips have been found in the oddest places. Each time I saw him performing his surgery, I would think about putting oil in his ear then forget about it until the next vigorous attempt. The action was always accompanied by wild facial contortions, forcing me to suppress a giggle.

Over the past few weeks he has been generally more withdrawn, confused and silent, usually not responding to anything I say, which I just put down to the progression of the disease and thirty-plus years of marriage.  But yesterday, when I realized that he was now digging away at both ears, I asked him if he was having trouble hearing. Silence. This time louder, "Can you hear me?" Apparently he cannot unless I shout.

So maybe this has been the reason for his further withdrawal. Earwax. I dragged out some oils and potions designed to soften the wax but since the oil was to remain in the ear for a time with the small cotton plugs in place to be effective, it was immediately apparent that, since he repeatedly pulled out the plugs and dumped them onto the floor seconds after I inserted them, this was not going to work.

I called the nurse this morning for an ear exam and have yet to hear back from her. In the meantime, there is a lot of very loud shouting going on in my desperate efforts to be heard and understood. And I must compete with the television which needs to be jacked up to nearly full volume for him to hear anything. Add to that my occasional rhinal outbursts of the past two days and you will get an idea of the loud cacophony that no doubt must be heard throughout the community if not the country. And that's not even considering two rowdy dogs who need to yell at everything that moves.

Sheesh, for two otherwise pretty quiet, retiring folks, we make quite a racket.

A Night Out With Meryl

And Shirley and Carol and Angela, all equally strong, fine women. There would have been more of us but the region was hit by a small snow storm that threatened to escalate to a road-blocking extravaganza, making a few of our company worried enough about the driving conditions to cancel. But it was my rare night out and nothing short of a serious tempest was going to stop me. I offered to do the driving in to town to see "The Iron Lady"; I am so glad we were not deterred by the weather.

Meryl Streep, as most of you already know, wrapped herself up in the role of Margaret Thatcher so completely that I forgot she was Meryl and not Maggie. Told from the perspective of the here and now with an elderly Mrs Thatcher in the advanced stages of dementia and flashing back through her incredible history, we get a glimpse of the strength of this woman's formidable character, for which she was roundly hated by many, and of the unbearable sadness of a brilliant life reduced to isolation and the hallucinations that can accompany dementia. That artistic device is employed to bring back her husband Dennis (Jim Broadbent) who, you believe at first, is still alive and well and enjoying a boiled egg with his wife. Through the movie she struggles with his persistent presence, realizing occasionally that he is just a figment of her addled brain, and then she tries to banish him by turning on every electrical noisemaker in her home, desperately believing that if she cannot hear him, she will not be able to see him.

Whatever anyone might feel about the real Maggie Thatcher, nobody, I wager, will walk out of the movie house untouched by the character's sadness and grief, especially if you have any experience at all with advanced dementia.  Her husband's presence, albeit ghostly, gives her enormous comfort in her now circumscribed life. I was reminded of my mother who, in her last days on this earth, would be nodding off in her wheelchair, oblivious to her present company, then would chuckle happily and say, "Oh Jack!" in an admonishing tone, as if scolding my dad for some little joke he had told her, just as she used to when he was alive. It gave me great comfort to imagine Dad was there with her, teasing and cajoling her through her difficult last days.

Living in the past is not only a clever story-telling device but also a ruse played by the mind of a healthy soul to cope with a difficult present. I know Michael sometimes is thrown back into the past and can get locked into it, scrambling his perception of the present, but I too employ the device to get me through a troubled day.  To remind myself of the man that once was allows all the love and admiration I felt for him to flood back as I change the diaper on the man with a now wasted mind. More and more often I find myself  reliving past happy occasions. It is an odd feature of our memory how we can delete much of the not-so-perfect events of our lives together while idealizing the good. Even if it is not an altogether accurate history, I'd rather remember only the good.

We heard yesterday that my aunt had what is believed to be a massive stroke, though that has yet to be confirmed by the staff at the hospital in England where she is being treated. She is my last remaining blood relative of that generation, a fiercely independent woman who has had to live alone nearly thirty years after losing her husband far too early to a heart attack. I just spoke to her last week and listened to entertaining stories of her recent travels. Still bright and articulate at 87, she lived in her own home until yesterday morning when she was found unconscious by her cleaning lady. We have yet to learn what her prognosis is; childless, she has no other close family besides my brother and me so I worry about her loneliness. She was on my mind throughout the film last night, wishing I could share it with her and hear her perspective on the fierce and unforgettable Maggie Thatcher. But I was also fervently hoping that her own dear Alan is at her side right now, teasing and making light of her current condition, just as her brother, my father, seemed to do for my mother.