Nocturnal Wanderings: Kinesia Paradoxa

While I dream about my baby abandoned in the closet of a hotel that also happens to have a serious infestation of bedbugs, my husband clangs for my attention. It is 4 a.m. and he is anxious about a screaming baby he can hear. The next night I think that the cause of my interrupted sleep is simply another menopausal meltdown since I hear only faint rustlings from Michael through the monitor. Then a light goes on downstairs. I am instantly alert as I realize there is nobody else in the house. Just Michael, me and two sleeping dogs. 

My heart races.

Life, during the past several weeks since my illness and return from hospital, has been relatively calm considering how turbulent it could have been in the wake of that emergency. But the deep waters of my husband's subconscious are not still; they are obviously roiling despite his lethargy and withdrawal into sleep most days. Recently he is often beset with that strange paradox of Parkinson's disease: when anxiety overwhelms, he becomes extremely mobile and competent even at this advanced stage of the disease. 

There has been nearly daily anxiety over a trip he is convinced we must make or a meeting he must attend. Most days he collects all his toiletries in the bathroom and carries them to his room to pack. Twice I found his closet emptied out onto the floor while he sat overwhelmed by the task of preparing to travel somewhere. Vestiges of all those global business trips he used to make as a high level engineer for National Defence? Or is he fretting about my return to hospital on January 3 for the long-awaited gallbladder surgery, determined to go with me this time?

There have been increased visits to the basement to "fix" something, usually during his sometimes manic evening hours. I must follow him on these excursions because of the danger he can put himself into as he tinkers with sharp objects, not to mention the electrical panel that seems to draw his attention and concern. For some mysterious reason he must always approach all things electrical wielding a sharp metal object.

The temperature has dropped outside but that hasn't killed his drive to leave the house occasionally, all without warning and often without proper attire. He is still remarkably quick, adept and quiet when he is single-minded and determined.  I have been lulled into complacency the past year or so since these episodes had nearly stopped; I am having to sharpen my wits again.

I am truly awed by this man's continued physical prowess despite the ravages of this disease. He moves far less now and most days that movement is interrupted by louder, more violent falls. I, so inured to the thousands of falls he has taken over the years, find myself cringing now at their severity. Many people give me a questioning look when I report these falls, wondering why I don't try to prevent them and keep him immobile, protected. That would require forcible confinement, I'm afraid, and I would become his jailer. Initiating movement is still one of the few freedoms left to this man, and he remains miraculously uninjured apart from the growth of a few strange fibrous bulbs on his knees. I will reassess matters if and when he truly hurts himself. In the meantime I think I have done all I can to make his movement through the house as easy and unconstrained as possible with strategically placed grab bars, wide open spaces and familiarity.

But this morning's feat was stupendous. I was lying in bed, just awake, awash in hormonal sweat and not yet paying full attention to the rustling I could hear in Michael's room. At 6 am he is normally suffering from bradykinesia - the extreme slowness of movement associated with the "off" medication times - if not near-paralysis, his last dose of Parkinson's medication eleven hours earlier. The noises I was hearing surely were nothing more than the waking movements of a stiff body.

When the lights went on downstairs I was out of bed at lightning speed calling his name. I was stunned to find a robust and alert husband preparing to climb the stairs in search of me. Not only had he made it successfully out of his imprisoning hospital bed, he had climbed over the baby gate I use to keep the dogs confined at night in the hallway outside his bedroom. On top of that he was fully dressed!  Pants, socks, one slipper and a warm fleece jacket over his shirt. Even his sodden diaper had been carefully removed and neatly stuffed into the garbage pail by his bed. I was dumbfounded, awed, and mostly grateful that his instinct was to find me and not flee outside on this cold night.

My first comment was to express my admiration at his overwhelming accomplishment. Then I asked him if anything was wrong. "Anna's sick," he said, clearly troubled. 

"No, I don't think so," my calm reply. Our eldest child, recently married and now pregnant (yes, we are to be grandparents in 2013!) has been very healthy so far, but I promised myself to contact her at a more reasonable hour since Michael had just managed to plant a seed of anxiety in my own brain. I asked him what he wanted to do. I couldn't deny him the pleasure of staying up if he wanted to after that remarkable accomplishment.  But he indicated he wanted to go back to bed. I had to steer him in that direction since he had forgotten where his room was. He was starting to crumple now that I had been roused and he had handed over the problem to me.

I too returned to the warmth of my bed but was unable to relax, listening intently for the reassuring sound of the heavy breathing of sleep to transmit through the monitor. 

I write this now seated opposite him at the breakfast table. He is unable to concentrate on his oatmeal, spooning it over himself or into his tea more frequently than reaching his mouth. He is hallucinating, making strange noises and pulling contorted facial expressions, far worse than usual. The newspaper lies mangled around him, his glasses have fallen to the floor. He is glassy-eyed and clearly disconnected. He will most probably sleep through the rest of the morning, his countenance a dramatic shift from the agile, intelligent man I met on the stairs in the early hours.

I am bracing myself for the next chapter of my own minor illness and treatment. So inextricably linked are we that I know this next stage will be very difficult for him despite all the careful planning I am able to do in advance this time. It fills me with an anguish that I must hide from him but he will no doubt absorb in his uncanny way.

* Ernst Ludwig Kirchner, "Self-portrait as a Sick Man", 1918.

A Conversation

"We need to talk about what we're going to do with all our stuff when we leave." His voice was anxious. He had lurched into the kitchen to make this unusually coherent statement.

"Okay. Where are we going?" she asked, nonchalantly flipping through a new cookbook.

Pause. A slight flicker of panic. "I don't know."

"Well, when you know, then we'll talk about it."

"Okay...do you want to stay with me?"

"Yup." Eye contact. "I'm not going anywhere. Are you?"

"No."

"So, do you want to stay with me?"

Twinkle in the eye and the hint of a smile. "Yes."

"Good, then it's settled."

"Good." He leaned in for a hug then shuffled and stumbled back to the couch.

* Aigen Kirche window, Wolfgang Sauber

Circumscribed

It is difficult to imagine a life any quieter than we were leading before the Great Gallbladder Debacle, but since my return home on November 2 - a joyous occasion for me - I have hardly left my immediate neighbourhood. And I am as happy as can be.

One reason for this greatly circumscribed life is self-imposed. No doctor advised me on an appropriate diet for my now extremely sensitive organ, but given how little was consumed to trigger the first very violent attack, I returned home eyeing every morsel of food with suspicion. I restricted myself to foods with zero fat in the first few days, then slowly and nervously introduced exotic foods like oatmeal and soy and flax seed but only in very small amounts. Homemade gelatine and fruit juice desserts became a staple as did soups made with fat-free broth and oodles of vegetables. These very nutritious but calorie-light meals meant I was having to eat every hour in the first week, my body desperately trying to regain the rapidly lost seven pounds. One cannot go very far afield when one must eat so frequently. Nor can one leave home for long when food preparation becomes so labour-intensive. No quick, processed foods for this digestive system.

I ventured out with my friend last Monday morning, resuming our weekly tradition of breakfast out. I threw caution to the wind and indulged in a cup of decaffeinated coffee with partly skimmed milk and a single waffle with no butter, only artificial syrup. I didn't realize how serious my mistake until an hour later when the pain hit with the same force as the day that had sent me to hospital.  I spent the rest of the day in excruciating pain, calling around to find someone to sit with Michael so I could once again hitch a ride in an ambulance to the hospital. After calling just about everyone on my help-list (most people aren't home on weekdays - surprise, surprise), I finally nabbed a neighbour in the afternoon, the pain now having reduced me once again to a writhing mess on the kitchen floor. As soon as he saw me in this state he asked if his morphine pills, prescribed for recent surgery, might help? YES. PLEASE. As my surgeon had failed to provide me with a prescription for the only medication that seems to touch this awful pain, I gratefully accepted a pill. Within an hour and a half the pain had disappeared and didn't return. Needless to say, I am now highly motivated to adhere to this strict diet until this offensive little organ can be removed and thrown very far away. I might even ask to be able to stomp on it fiercely first and pulverize the offending stones.

Another reason for my hermit life was the extreme fatigue I felt for the first three weeks home. I sent my daughter home on my fourth day, realizing that surgery was not imminent and I didn't want to squander my very precious help, preferring to call upon my children only when things might get bad again. This meant stepping right back into full Michael-care. Though he fared well through my absence and has done quite well since my return, there have been some significant set-backs. Constipation was a severe problem for two weeks, requiring interventions I haven't had to rely upon for two years since I started the flax seed solution. With the constipation always come heightened anxiety and confusion, therefore many nightly attacks requiring a soothing word and heavy medication. One night he was unable to understand how to feed himself his usual bedtime snack of yogurt so I had to spoon-feed the poor man. These are not extraordinary reactions to stress for him but there were many nights when it felt like more than I could handle in my own fragile state. Consequently during much of my precious respite time with my precious caregiver, I simply climbed the stairs to my bedroom for a much needed and lengthy nap.

A relative enthusiastically commented that at least now I know I can leave Michael and he will be okay. Nothing to worry about. True, and certainly when I have to submit to the knife (January, I'm told) I will not hesitate or worry that the many people required to care for him in my absence will not be able to cope. But the fallout remains a huge problem. While witnessing my most recent brutal attack, he seemed unperturbed, but it was afterward that his psychosis and paranoia kicked in, turning a thirty-six hour recovery for me into a much longer ordeal for him as his demons overwhelmed him as soon as I was better.

On some level I think he understands that I am ill; I don't abandon him intentionally. So while I was gone he was able to hold it together for his substitute caregivers. He even wrapped me in a warm and protective hug on my return home.  I choked up and melted into his embrace, momentarily pretending my old husband was back to take care of me. But it didn't last long. The child within returned before nightfall and, like the dogs who took up residence on my bed that evening, Michael didn't want me out of his sight. 

I was back on the job. Hey, I'm not complaining.

*Small Island in Saranac Lake, October 2007, Wikipedia user Mwanner

Life Suspended

A week in hospital; a life suspended. No responsibilities: no meals to make; no medications to administer; no anxiety to mollify; no midnight awakenings to attend to. Nothing.

Two days before my emergency run to the hospital, Michael awoke me at midnight, extremely agitated. He was clutching his upper right abdomen, uttering the words "blood" and "hospital" and "sutures". I had to medicate him, sit with him, and open his bedroom door to show that his room was in our house and not in the dreaded hospital. A premonition?

My journey to the hospital was quick - no sirens. The kind and calming paramedic monitored my vital signs and taped electrodes to my chest. He assured me I was deemed urgent and the wait time shouldn't be long: "You picked a good night."

My first injection of morphine was administered at 9:00 p.m., three hours after my departure from home. Friends arrived quickly and took charge. Questions, painful prods, deep breathing remembered from childbirth, though this extreme pain had lasted longer than any labour I had experienced; my longest, my first, only four hours. 

9:30 p.m.: all of a sudden pain evaporates and I wonder if I'd ever had it. Magical morphine. I don't even feel drowsy or doped, more elated and energized. I'm wheeled from the examination room to a stall in the emergency ward. A handsome nurse faces me from the nurses' station. My friends leave me to the fine view. I resolve to enjoy the rest even if it must be hospital.

Morphine overwhelms for a few days but I am even sent home twenty-four hours after admission, only to return a few hours later in more pain. The vestiges of Superstorm Sandy roar outside but I am unable to see or care from my cave-like existence. 

Copious amounts of blood are withdrawn over seven days; concern over a liver in crisis. Human pincushion. Ultrasound, endoscopic procedure, intravenous hydration and nutrition, more morphine, anti-nausea medication. Still no enlightenment on the liver trouble but my liver enzyme levels are falling, moving in the right direction. Liquid diet when not overwhelmed by nausea. Suddenly four days later the pain is gone, gone, gone. Sweet relief. Sweet unmedicated sleep.

Two cramped, battered rooms; three roommates, two of them men. Dirty windows. Loud snoring, belching, coughing, moaning; occasional conversation in a language smattered with French and English; blinding florescent lights; electronic beeps throughout the night; malfunctioning machinery that I learn to fix myself to ensure sleep. Modesty must be discarded. Sponge baths. Midnight transfers; motion sickness. 

I am humbled by my illness, surrounded by others who suffer. Pain and suffering are the great levelers. Death too.

Frustration over doctors who might have a master plan but communicate little to a person used to being in control. My grasp is slipping. Fear is non-existent. Submission creeps over me. Sleep.

News from home: two daughters take turns caring for Dad with the other two offspring waiting in the wings to be called to duty; caregiver sleeps over and keeps life as normal and calm at home as possible. Reports are surprisingly positive about Michael's condition. A few cracks but I don't care.  

Visitors shuffle through. Concern on their faces doesn't faze me. I'm content to stay here as long as I must. Resignation.

My last day my vitality returns with surprising force despite starvation. The weight has slipped off my thin body while I wasn't caring. My intravenous has been removed. A blessed shower is offered. I consider the possibility that I might have to stay here much longer so I set out to pace the hallway with vigour; I must keep up my strength. Patients and nurses watch me quizzically as I stride with as much power as I can muster. Then sudden release by the surgeon with an appointment for an MRI after the weekend. My friend magically appears to whisk me home in his very fast car. 

I must await the surgeon's verdict and avoid further trouble by adherence to the strictest diet I've ever had. 

It's over...for now.

Vincent Van Gogh, "Dormitory in the Hospital in Arles," 1889.

Autumn Storms

The leaves were finally liberating themselves from their fettered summer life and their blazoning autumnal death throes. A strong wind was all that was needed to complete the job. Superstorm Sandy promised to take care of that even though I doubted the dire meteorological warnings for our area. Weren't these the same people who predicted mere showers the weekend we had the rain storm of the century in June 2011?

An odd, blustery frenzy had held me captive for many weeks. It was akin to that mysterious hyperactive nesting instinct that overcame me just days prior to the birth of each of our children. We had moved into our first house together just nine days before our eldest child was born (two weeks early), and instead of the quiet, settled accouchement that I had imagined, I was attacked by a feverish energy to scrub every surface of the nursery, indeed the entire house. Or just before the birth of our youngest, when I was homeschooling his three older sisters, I was up till all hours of the night preparing lessons for our children to pursue independently or at least with less of my involvement until I was back up to normal speed.

I interpreted this year's energy as my usual change-of-season restlessness when many household tasks must be completed before the temperature plummets and the snow piles up: Gardens needed to be put to bed; perennials had to be split; the large, heavy rubber mats to prevent slipping on the ramp had to be laid; windows washed; outdoor furniture sheltered or stored; hoses rolled up and put away; furnace serviced; shed cleaned out.

But this year there was a heightened restlessness: I furiously rearranged bedroom furniture to better accommodate our growing family; I bought beautiful Persian rugs online to decorate my house; I released many of my beloved books from their isolation on dusty shelves to other homes where they could be enjoyed; I planned a possible basement renovation project, heaving and sorting the accumulated junk. Then there was that wild two weeks where I was even planning a possible future without Michael and a complete change in my living environment, followed by a hastily arranged visit to a cemetery to purchase our final piece of real estate.

For many months, with two weddings and various other major events in our children's lives, I had nervously watched Michael's condition, hoping that no crisis would befall us to sabotage any of these important occasions. The energy I expended to keep things under control sometimes felt Herculean. But rather than exhausting me, it seemed to fuel the fire of manic activity. We just had to make it to Saturday, October 27, the date our son and his new bride would be returning from their honeymoon. chased ashore on their cruise out of New York City by the spectre of Superstorm Sandy. After that I knew our children's lives would probably settle down to a comfortable hum.

Our children have developed a wonderful resilience throughout the years of their dear dad's illness. Poised to jump without fanfare or drama at the call of any crisis, they have learned to conduct their lives with a calm and strength that I love and admire. For that very reason I have not called upon them more than absolutely necessary, knowing they would abandon everything to lend a hand of support. They have all apprised their various employers of the sometimes dire situation at home; they've all been supported whole-heartedly and granted permission to leave whenever they need to. But my children live a minimum of 200 kilometres away, one in the very middle of our vast country. I cannot impose on their busy lives more than I have to; I cannot take advantage of them. They have careers and families to manage as well. They have achieved the glorious independence for which Michael and I trained them.

Saturday, October 27th was to be the second day of a sale at the Nearly New Shop across the road.  I had my four volunteers in place to care for Michael over the weekend, each doing a two-hour shift. Friday had been a busy and lucrative night for our little charity shop. Saturday was likely to be quieter but we were short-staffed. Some of our trusty volunteers had funerals and family responsibilities to attend to. There would only be two of us to hold down the fort,  no difficult task on a quiet Saturday.

My first Michael-volunteer arrived early. I chatted and filled him in on Michael's minimal needs for the morning. That was when I felt the first twinge in my gallbladder, an organ that has been an occasional but painful nuisance for the past five months. I grabbed the cash box for the sale and dashed out the door. I was barely down the driveway when the pain hit, not violently but assertively. A few seconds later I was at the church where another volunteer was pulling in, one I hadn't expected. I greeted her and expressed my relief at her presence because I knew I had to go home. The pain was already nearly unbearable.

My previous gallbladder attacks have been predictable and short-lived. If I ate a few too many potato chips or turkey and stuffing I would brace myself for the inevitable middle-of-the-night wake-up with biliary colic. Or I would take a prophylactic pain medication which usually worked to suppress the pain before it reached fever pitch. It was a system that worked well. I could live with the pain, sometimes worth enduring for the joy of a rare, delectable treat.

But this was different.  I had had my usual breakfast of granola, normally a safe food. By ten o'clock I was in agony with what I knew was gallbladder-induced pain but far worse. On the scale of one to ten that I was later asked to rate my pain at the hospital, my morning suffering was a definite ten, right up there with childbirth pain.

I arrived home minutes after my departure and prepared to cope with the agony, believing it would abate in a few hours like all the other attacks. My friend who was here to look after Michael kept me well distracted with his lively and friendly conversation.  We covered a whole range of topics with me all the while down on the floor on all fours and my rear end up in the air, my go-to position for any abdominal pain. I took my usual two Ibuprophen and prepared to wait.

Two and a half hours later the pain had subsided somewhat but wasn't gone.  When my second volunteer arrived I decided to head back to the Nearly New Sale to help out and distract myself, still believing the pain would eventually disappear. I worked slowly and cautiously, preserving my strength.

Upon my return home two hours later, the pain was still rumbling ominously but I decided to try a bite to eat, two arrowroot cookies and a pear. Immediately the pain returned, this time more like an eight on the scale. I knew I was going to have to act so a bulk text message went out to my four kids warning them that I might have to go to the hospital. I called my caregiver to see if she could stay the night if necessary. She could and put herself on standby.

I spent the next two hours gauging the pain which wasn't mounting but also not subsiding.  I had a hot bath and put on my pyjamas, slightly relieved from the heat. I packed a small hospital bag and prepared Michael's drugs for the week. It was while I was doing this small task that I nearly passed out from the pain. Grabbing the kitchen counter and spilling a few pills, I took a few deep breaths and finished the task. I called the closest offspring, who jumped into planning an immediate trip home, and then my caregiver. I called my friend and neighbour to come right away.

By now I was sick with pain, barely able to stand up. My friend offered her husband as chauffeur but I declined; I wanted an ambulance, knowing from past experience with Michael that I would get attention more promptly and I could travel on a stretcher, my pain by now supreme.

I don't think it was more than ten minutes before the ambulance came but my memories are muddled. My wonderful caregiver arrived sometime before that, my relief at the sight of her overwhelming. I do remember climbing onto the stretcher with the paramedics' calm voices and competent hands assisting me. I sank into the thin mattress, utterly relieved to be leaving, completely detached from the outcome for me or for Michael. As I was being wheeled out I was aware that my son had just called in to say he had arrived home safely. I sighed, relieved.

It was time to go. I felt swept away, no longer having to hold on.

*Antonio Parreiras, The Gale, 1888

Be Prepared

I held my breath for weeks before our son's wedding. Would anything go wrong to mar the day? Michael's condition seemed to worsen in the weeks before, leaving me in a state of controlled panic, all the while planning my strategies to manage his mounting anxiety and weakness. Or was he merely reflecting my own turmoil? 

For two days just before the big day Michael's lips were fairly constantly blue as were his feet. His bowel activity, always the litmus test of wellness, ground to a near halt throughout the month leading up to the wedding. Pink dots on a calendar, specifically put aside for recording these momentous events, were occurring only weekly rather than the preferred daily frequency. Laxatives were once again added to his arsenal of medications, mostly ineffectual. I tried to prepare myself for catastrophe, praying that he not choose to leave this world in the days around our son's wedding. That's how certain I was that his time was imminent.

But, once again, I was very wrong. Apart from my having to repair a toilet mere hours before the event, there were no other calamities. I was able to get Michael dressed and ready for the event, all with the aid of Ativan once again ... for him, not me. I even managed to get his shirt and pants done up properly for this wedding, allowing for the tie that was missing at our daughter's wedding in May. He looked dashing and well put together.  I, on the other hand, had forgotten most of the jewelry I had intended to wear and had a hasty job done on my hair at the last minute by willing daughters.

Sunday night, after the house had emptied out, I collapsed. We both did. Michael's anxiety ebbed over the next few days, allowing me to withdraw the Ativan by mid-week. The pink dots started to reappear daily on the calendar.

For some reason, while all this nervousness prevailed, I arranged to look at a small house, imagining a life on my own. I also made an appointment with a local cemetery and funeral home to start planning and paying for our final ceremonies, and I met with my religious community for a chat.  I was doing what I always do: I was being a good Girl Guide, assuming I could be prepared for anything and everything that might come our way. If nothing else, the frenzied activity surrounding all this planning kept me busy and distracted from the worsening situation at home.

But life settled down and resumed the normal quiet drone of chronic illness. I felt I had at least faced the next hurdle by starting the funeral plans. I was feeling calmer.

Then I had a dream. I was visiting an old friend and former neighbour who recently lost her own husband. I entered her house through the back door into her kitchen, as I had always done when our children were small and we nearly lived at each other's homes . We visited then I left the same way I had come in. This time the back pathway turned into a narrow bridge over a violent torrent of floodwater. Suddenly my sister was by my side and we were both leaning over the railing to marvel at the surge beneath us. I momentarily wondered why she was there, dead now well over a year, but I was happy to see her. She laughed at something then backed up on this narrow walkway only to step right off the unguarded edge, falling straight down into the maelstrom. She and I screamed. In my horror I watched her carried downstream, knowing with a certainty she was dead - again - but I still frantically yelled out to her to swim to the riverbank, to save herself, my voice swallowed up by the noise of the rushing water. I was bereft  -  and then I woke up.

I cried, curling myself up into a ball, grieving all over again for her loss. I haven't had a watershed like that for a very long time so I let it go, soaking my pillow, carried uncontrollably down that stream by my own grief.

I don't think I'm as prepared for what is to come as I am fooling myself into believing.

*Adi Holzer, The Flood, 1975

Regeneration

It started with a minor malfunction of the newly installed water treatment system.  Craving a late night snack, I had gone into the basement one night to retrieve a new carton of almond milk stored in my pantry. This machine was making a noise I had never heard from it in the three months since installation. I felt fatigue as I anticipated a new household crisis to be managed but assured myself it was probably quite normal and the best thing was to climb the stairs to bed, eat my cereal and try to forget all about it until morning.  I would act then if the noise hadn't stopped. As I approached the system to inspect it I noticed the time piece on the front was flashing and displaying the wrong hour, three hours later than it should be.  We had had a minor power outage that afternoon but it had never done this before. My alarm was mounting but it was late.  What on earth could I do at 11:30? 

So I did climb the stairs to bed and managed to sleep. I have mastered the art of shutting out what I cannot change, whether that is a human tragedy far away or a minor malfunction of machinery in my house in the middle of the night. 

The next morning the noise had stopped but the time was still flashing accusingly. I hauled out the manual to reset the time myself but it refused to cooperate. Finally a very kind man at the service department patiently walked me through the steps over the phone. Apparently I just wasn't pressing the button hard enough and the noise was entirely normal, indicating that the machine was "regenerating" itself, a process that normally occurs at 2 a.m. when I never hear it. It was doing exactly what it was supposed to do except that it didn't know that the real time was only 11:30. Regeneration was happening prematurely. 

After dealing with that minor problem I slumped over my breakfast tea. I'm tired. Tired of taking care of everything. Tired of holding it together all the time while Hell breaks loose. Tired of the endless repetition of the mundane tasks that keep Michael alive and well. Tired of the past three weeks of intensified care; of getting up in the night to reassure and medicate Michael during an anxiety attack; of staying cheerful and calm all the while dreading how he will react to our son's wedding next weekend so soon after this most recent dip in his condition.

I opened up my computer and for some reason I flipped to a real estate website. What possessed me to do that Heaven only knows, but listed there was a cute little house just around the corner from me, not more than a few hundred yards away. 

I scoured the ad, always enjoying the vicarious pleasure of snooping through a neighbour's home and pretending I might live there. But this time I got insanely excited.  Here was a quirky little place, 900 square feet of living space with wildly coloured walls, low ceilings and a tiny yard and driveway, features that are nearly unheard of in this town of acre-sized, maintenance-heavy properties. 

What a relief that would be to have a small city-sized yard and garden to manage. I could take care of it myself instead of paying someone else to cut my field of weeds and grass. And the driveway. It would mean no more shoveling than I am already having to do around my house while my paid helper clears our field-length driveway. 

Suddenly I wanted that house and all it represented: my own manageable space, a hideaway, a new life - regeneration. I began to walk through my house and imagine all the things I might need to fill this little house and was surprised to discover that I was remarkably detached from most of the furniture that fills it.  I am detached, that is, in the purely hypothetical. Heck, I could get rid of most of it and start all over again with the exception of a few precious pieces that my dad or Michael made. 

I booked an appointment to visit this place, explaining to the agent that I would have no interest in moving into it until I am alone but having no idea when that might be.  I reasoned that this house, so much less valuable than our own beautiful home, would free up equity for me when I am widowed and needing more liquid assets at my disposal. Besides, I realized through this entire exercise that I don't want to rattle around in this home all by myself.  It is already filled with the ghosts of bygone days of happy children and a happy marriage. And then, with my beloved partner gone, it will feel even more like a mausoleum.

For several days before my appointment I was consumed with excitement. I couldn't sleep. I made lists of things this odd little house might need to have changed - a ghastly blue carpet in the living room that clashes with an even wilder shade of orange on the walls. I made other lists of all the things I would get rid of, that there'd be no room for: the now unused piano, the huge sectional couch, beds, the too-large television.  Everything would have to be scaled down to fit my little cave. 

The agent/friend I contacted had to pass me on to a colleague; he was in hospital and not very well. But Mr. B will take good care of you, he reassured me. In the meantime, smelling a sale, he made calls to a financial advisor to help me out. We can get this going, he gushed.

The morning of the appointment I worked hard at quelling my elation. I know how impulsive I can be about real estate. Michael was always the one quietly cautioning me in the past when I got a harebrained idea to rush out and change our lives. Over the years I learned this was my way of expressing that I needed a change in my life from the tyranny of childrearing, homeschooling, caring for sick parents and now Michael's infirmity. This was probably no different but this time I don't have my Michael's quiet voice letting me just get it out of my system, never squelching my enthusiasm, just being the voice of reason. The two wonderful homes we have owned together were purchased when we were both completely agreed upon the inevitability of them being our own. 

My caregiver arrived and I had an hour to walk my dogs before my appointment.  I prayed to know whether this was a good idea to plan my life after Michael's departure, to think that far ahead. I want to stay right here in my community but this big house of ours just seems too much some days.  I wanted some kind of sign. 

I dashed across the road to meet the agent, a man I do not know. We had emailed each other back and forth to set up this time. I climbed the stairs to see if he was already inside even though there was no car in the driveway. Nobody. I walked around the property while I waited checking out the roof, the foundation, the backyard, the windows, the garden, the garage (we've never had a garage before), the front porch. I sat upon the lovely front porch and watched the cars go by on the major road in front wondering if it might be too busy, too noisy. I started to get impatient. Finally, half an hour later, I grabbed my little cart and wandered across the road to do some shopping but not until I had left a note on the door with my cell phone number (why hadn't I given it to him before?), assuring him I was just a few seconds away when he arrived. He didn't.

On returning home I immediately checked my email. There it was: an apology and an excuse. I guess I got my sign.  

I was dejected. I had wandered home with a heavy heart but felt uplifted when I saw my own beautiful castle. Not yet time to be thinking about such things. But I am convinced that I will probably move on one day. Maybe I will book another appointment. Maybe not. 

In the meantime, I have reset my regeneration button.

*Boris Kustodiev, Blue House, 1920

A Broken Heart

Dear Dr. Neurologist

Though I would prefer to engage in an actual conversation with you about Michael’s condition, I thought presenting my concerns on paper might be a more efficient use of our fifteen minute visit. It also shields him from having to hear difficult information about his condition that would only cause anxiety. 

Michael’s condition has changed and I have some serious concerns. Dr. G.P. examined him last Friday and discovered that Michael’s oxygen levels are low when seated, lower when lying down. This suggests heart failure, which might explain the purple lips I’ve noticed occasionally over the past couple of months and the lower heart rate (at times as low as 45 beats per minute).

This past week Michael has had many moments of delirium and confusion, more than usual. Last Tuesday he passed out during a coughing fit in the middle of dinner. Since then his mental state has been much worse, though today he seems back to what is normal for him. All of this is also in the wake of my first night off in several years, leaving him at home in the care of our caregiver two weeks ago.  He did not respond well to my absence and needed to be medicated with Ativan for several days before and after.

Dr. G.P. would like to pursue the possible cardiac problem.  I have said that any invasive technique like an angiogram is out of the question given Michael’s extreme sensitivity to hospitals. I think it could even be dangerous. A simple x-ray or ultrasound might be tolerable for him but only if the procedures can be carried out quickly and without a prolonged wait time beforehand. Going out to any appointments is very difficult now.

I am guessing this apparent heart condition might be a complication of the Parkinson’s disease. Though Michael’s blood pressure on the Domperidone has improved, there are still huge daily fluctuations: his 10 a.m. reading might be 100/50 and his evening reading 183/95. There is, however, no consistency to the readings, no apparent trigger for the highs or lows. He has extreme shortness of breath with exertion, accompanied by the blueness of the lips and low pulse rate. He is sleeping much more.

My goal in caring for Michael has been to keep him as comfortable and happy as possible, and avoid hospitalization to which he has an extreme, psychotic reaction. I feed him healthy, low fat, low salt, mostly plant-based foods; in short a heart-healthy diet though he often refuses certain foods now. His bowels are a constant concern but in general I am, through diet, managing to keep him fairly regular, resorting to medications only occasionally. 

We are now at the stage of focusing on the quality of his life, not the quantity. His dementia keeps him blissfully ignorant of the severity of his condition. I prefer to keep it that way, if possible, by not adding anything to his life that will send him into a psychotic meltdown. I want him to die at home whenever God sees fit to call for him.  I want all future treatment to be only with an eye to improving or maintaining that quality. I know it is what the old Michael, now long gone, would have wanted.

Sincerely
Claire Verney
Sad Caregiver

* The Wounded Man, Gersdorff, 1528.

Food May be Hazardous to Your Health

Her head was down, lost in a puzzle, her usual way of passing a silent meal. She had decided on an easy meal of beans on toast (an old favourite from her childhood) but had jazzed it up with a fancy salad dressed with fruit and nuts to assuage her guilt over the otherwise canned meal.

He ate in complete silence as always. Sometimes, if he doesn't like the meal and is too polite or just rendered mute by the disease, he will be as quiet as death, not moving, not speaking, not eating. It is what dining with a ghost must be like.

Tonight he was happy with the meal, if not the salad. She had been sure to make the toast fairly soft, knowing he can have difficulty with very chewy food now. The beans were easy for him.

He started to cough. Parkinson's patients can have a great deal of difficulty swallowing as the disease progresses but he has had little trouble, eating ravenously at times and putting on weight in recent months. He has never had trouble swallowing his pills either, often gulping down a handful all at once.

But there is that cough. Nearly every meal makes him cough at least a little. She is so used to it that she barely acknowledges it anymore. She tries not to be annoyed by it because, to her jangled nerves, it sounds like he is forcing it sometimes like a small child vying for attention. But she knows he is not capable of such manipulation.

She lifted her head as the cough seemed to worsen, this time sounding loose and rattly. He rose from his chair to head to the washroom to spit out his mouthful but the cough rendered him too unsteady to go more than two steps. He was going to vomit on the floor, she was sure. Now on high alert, she ran to the kitchen to grab a basin, ordering him harshly to stay where he was. The coughing was now uncontrollable. Mucous was running from his mouth.

She ordered him to get down on his knees because he was buckling and in danger of collapsing. She had to assist him down as he seemed deaf to her instructions.

He was now retching loudly but was still breathing and making sound, both good signs that there was nothing stuck in his airway. He just needed to cough up whatever was stuck in there which she thought must be a small piece of pecan from the salad.

A second later he keeled forward landing with his face in the bowl. To her horror she could see he was unconscious; his eyes were open, tongue lolling out. Assuming the particle of food must now be blocking his airway she grabbed him around his waist - no easy task with an inert body - and summoned her learning from a first aid course taken decades ago. The abdominal thrust, as it is now called, was what she attempted, thrusting up into his diaphragm as well as she could in this very awkward position. Nothing. Again. He spluttered, coughed and spat into the basin which was now bloody from a gash on the bridge of his nose from falling flat on his face. All that appeared in the bowl besides lots of saliva was a very small, soft morsel of toast, hardly enough to cause such a fuss.

She assumed the punch in the stomach had dislodged the food but as she thought about the episode throughout the evening she knew that he hadn't really been choking beyond all the loud spluttering and coughing. Remembering a horrifying film shown during her first aid course, she understood that someone choking cannot speak or breathe. In this traumatizing film, the mother of the family simply collapsed and died in front of her useless family members after several minutes of silent but wild gesticulating. Michael was not at all silent throughout the attack. Could there have been a cardiac event causing him to lose consciousness? It was during a conversation with one of her concerned children later in the evening when she concluded that he had probably lost consciousness from a plummet in blood pressure. He had gone rapidly from sitting to standing to kneeling on the floor with his head down, all within a few seconds. His damaged autonomic system, that has caused a similar though less dramatic episode in the past, was probably not capable of making the quick adjustments required to stabilize his blood pressure. But at least the relaxing of the muscles while unconscious stopped the coughing and retching. 

He had little memory of the event later in the evening but seemed visibly shaken. So was she. His face maintained a pallor all evening and he was more withdrawn than usual.  His blood pressure was very high but by morning had dipped wildly again. All that morning he was more confused and lethargic, still overcoming the shock she assumed.

She has resolved to keep meal times more tightly controlled. That dinner had been delayed by a late telephone call but otherwise she always tries to have the meal on the table by 6 p.m. at the latest. Any later than that and he loses interest in food as his medication wears off.  5:30 at the latest in future. And she will never leave him to eat unaccompanied. She must always be within earshot from now on.

There was a moment when she thought this was the ugly end. There hadn't even been enough time to call an ambulance; it was all over in seconds. She probably should have alerted someone other than her children but we all know how a hospital stay would have worked out. It seemed more prudent to keep him calm and quiet, sitting right next to her all evening. There is a visit to the neurologist very soon so she will broach the subject.  She is doubtful anything can be done. Just more vigilance. Maybe more medication.

*Frans Snyder, The Pantry, circa 1620.

29 Hours

Twenty-nine hours. Tuesday morning to Wednesday afternoon. A blazing trip down the highway to Toronto to visit two of my kids. Eight, nearly nine hours of driving. Two hours back and forth on a train from my son's home in the extreme suburbs to my daughter's home in the heart of the city. Seven hours spent in bed, most of them asleep. A lot of walking. A lot of talking. A lot of fun crammed into a small space of time, all of which now seems like an improbable dream.

But I did it. I finally screwed up my courage and hit the road. I will do it again even though the fallout has been somewhat severe, but not nearly as bad as I expected. Ativan to the rescue once again. I had hoped to wean Michael off his three days on this strong medication but his anxiety was quite severe after I returned so I am taking it slowly. A debrief from our caregiver was positive - no calamities - but it was obvious from the complete withdrawal upon my return that my absence had been felt. Slowly in the evening his body softened and his glassy-eyed silence was broken. By this morning Michael slumped again, another brief - thank goodness - but disquieting rigid withdrawal.  He is better now, more than twenty-four hours after my return. All in all, not too bad.

I have turned the corner and will most likely try another such journey in the near future, though I won't stretch the time to more than one night just yet. Maybe a daring thirty-six hours next time.

My joy was loud. The visit with my kids was, of course, wonderful, but the drive was nearly as much fun. I whizzed my way down the highway with my music blaring, stopping only for bathroom breaks and strong coffee. I discovered I have cruise control in this new car, a novel phenomenon for me. Let me say that I love to drive. I love a stick shift. I love being in control. But I thought I'd give the technology a try since I have it.  I set it for about two km/hour slower than the lowest posted penalty speed, 120 km/hr - a mere $95 fine if caught compared to the $10,000, instant vehicle confiscation and license suspension for 150 km/hr.  Having learned my lesson a few months ago after receiving my first ever speeding ticket I was trying to behave despite my lead foot. I set the speed then tentatively removed my foot from the gas. What an odd sensation. The car seemed to have it's own mind and my job was simply to sit back with my hands on the wheel. The tachometer sat rigidly in one position and my speed never wavered no matter what the terrain. It took me a while to adjust to not being in full control even though I knew I could override the system at any moment to pass or slow down. Joyful Joyce seemed to take charge and wanted to make her own way forward with me as passenger.

I drove past places where I have friends. I briefly entertained thoughts of dropping in on a few. How nice it would be to have that freedom but, even if I'd had their contact information on me, my time was severely restricted and Joyful Joyce needed to get me home.

So instead I spent my time singing, breaking into hormonal menopausal sweats to sexy music, and observing cars. I can add a new fact to my overly generalized list of purchasing tendencies in our society.  Where middle-aged men like expensive convertibles and young men like souped up cars, women of a certain age seem to go for wildly coloured subcompacts, present company included. My hot green little gem was matched by shimmering blue and bright red vehicles of a similar ilk, mostly all driven by women probably wearing Birkenstocks or at the very least therapeutic orthotics in their shoes. These cars are a bit like those sensible shoes but with a big sparkly bow, or like wholesome brown bread with a sticky, sugary icing. We're trying to be wild and free of our responsibilities but cannot shake our deeply rooted sense of duty. I wondered if my sensible sisters in subcompacts were also breaking free for a much needed vacation, listening to loud music on their solitary adventures.

Vincent and Me

I communed with a great man today. A friend and I paid a visit to the National Gallery to take in the exhibit entitled "Van Gogh Up Close." It focuses on his years in France, the last four years of his life as it happens and, it seems, his most productive. But it was also the time when mental illness most overwhelmed him, killing him in 1890 through what appeared to have been a messy suicide. He was only 37. He spent much time in hospitals and then an asylum after a breakdown in 1888 when he famously chopped off an earlobe, all this in the wake of a nasty argument with Paul Gauguin. These final years of his life were spent fighting despair, depression, paranoia and hallucinations.

And yet, as I wandered through the exhibit humming Don McLean's "Starry, Starry Night," I was uplifted. Such light amid the torment. There is a sense of peace and serenity emanating from these masterpieces; obviously Vincent's art was a soothing balm to a tortured soul. As I inspected the details in some paintings, I was struck by a seemingly random splash of colour that had no discernible shape or meaning or, in another, a very unusual choice of colour. They almost seemed like mistakes but it was more likely that my strong sense of order and sanity wouldn't let me see their meaning.

I eschewed the headphone tutorial. I didn't want to be distracted from my own response to the paintings. I may go back and use the aid, but for my first visit I wanted no one else's perspective or interpretation to influence me. I knew enough of his life to just drift through the exhibit unaided.

Halfway through my wanderings I was hit by an intense sadness, especially after reading some quotations from his letters where he admits to his madness and his efforts to hang on to sanity through his art and his connection to nature. Clearly he failed, ending his life so violently. The demons overtook him.

But what a testimony to the breathtaking brilliance of his mind he left behind. What wonderful proof of the sanity deep within him even though his life was spinning out of control. What a soothing balm for me to recognize that no matter how wild and crazy a person might seem on the surface, deep inside there is a soul that is anchored and safe and untouched by the maelstrom.

All this is comforting as I contemplate a road trip I am planning to take next week. It will be my first overnight journey away from Michael in many years.  I informed him - perhaps unwisely - of my plan a few days ago but will not mention it again until the day I leave. Already the madness is quietly manifesting, though, of course, he cannot articulate his worries. Telling him or not telling him, I've learned, makes no difference to his reaction when the day comes. He might go over the edge, inflicting his own internal damage upon his person, his own symbolic disfigurement. But deep within I must trust there is still a little place where the real Michael hides untouched, creating his own spiritual masterpieces.

I have realized finally that this disease will probably hold Michael in its clutches for many years to come and I must take a night off if I can. Up until now I have kept going believing that this could not possibly continue much longer, that I could hold on until the end, sparing him the further agony of even brief abandonment. But recently a switch has gone off in my brain with the understanding that I must go if I am to survive this long-term sentence bestowed upon both of us. I am blessed with a gifted and competent caregiver in whose hands Michael will be lovingly looked after. She may have a big job; the worst may happen. But come what may, I must hang on to the notion that despite all the madness and confusion, Michael's soul will remain unscathed.

I took Michael up to the local soccer field tonight where his old buddies were playing a game. He arrived with a spring in his step and walked without falling once. He tossed down his cane, announcing he was going to warm up to play. I quietly told him he could not participate in the game. He glared at me, refusing at first to believe me, but he gave in and watched from the sidelines instead, running competently for the ball when it was kicked out of bounds. A masterpiece of movement. The air was crisp and clean, nearly autumnal. But it was the sky that amazed me. It was truly a starry night with a paintbox of deep blues. I felt as though Vincent himself were reassuring me that all would be well.

Vincent Van Gogh, "Starry Night," 1889.

Surfacing

If the landscape will not change, then one must change the landscape oneself.

"Do you think you could manage a trip to Montreal to visit Laura?" I asked desperately on Sunday morning when it was clear that the expected weekend caregiver wasn't going to show. I had plans to skip down to the river with the dogs for a long, refreshing swim on yet another hot, dry day, an activity that has saved me the past few weeks from certain despair, the controlled breathing of a hard swim a welcome, calming exercise. But in this caregiving business, I cannot count on anything and must be ready to scrap my plans at a moment's notice.

Michael was still seated at the table, his breakfast dishes emptied and scattered around him. His response to my question was to fall instantly asleep. Over the years I have learned to decipher the oddest responses from him. This one was deciphered thus: "I am too overwhelmed by your question and cannot answer you so I'm going to avoid you completely by falling asleep."

It has been almost a year exactly since we last ventured off on a day trip to Montreal ("Midsummer Madness") and Michael's condition has worsened - or my energy has weakened - making me wonder if we would ever manage another such journey together. It is only a two hour drive away, easy on a quiet day, but that can seem overwhelming for both of us if he is anxious. And you never know with Michael. He could be absolutely fine or the whole event could quickly devolve into a nightmare. Because I have dealt with more nightmares than I care to count, I usually err on the side of caution and stay home.

But by Sunday my restless summer madness had reached nearly a peak. I had even been fighting shortness of breath, probably more anxiety than a physical problem. A rare visit to my osteopath last week - who poked painfully and forcefully around my torso all the while emitting intimate noises I hadn't heard from a man in a very long time - seemed to release tension around my diaphragm. I spent the rest of that day yawning and breathing deeply as though I was taking my very first satisfying breath. I had come up for air and the feeling was so very satisfying. But it was short-lived. By Sunday the old feeling of suffocation had returned.

I propped Michael onto the couch for his usual morning snooze after rousing him from the table. I'll call Laura, see if she is home and receiving refugees, then reassess Michael's condition in half an hour, I thought.  In the meantime, I loaded up the car with everything I could think of for a day away with a severely disabled man, then took the dogs outside for a playtime before they might be shut in for the rest of the day.

When he awoke, I posed the question again. This time he didn't immediately slump into unconsciousness. He merely looked at me blankly.

Hey, that was an affirmative response if ever I heard one. "Right, we're going," I announced.

It took only the time to direct him to the bathroom for a final emptying, then I tied his shoes and we were off. From the formation of the idea to actual execution of the plan? Forty-five minutes, forty of which was his nap time.

We arrived home eight hours later. It was a wonderfully successful, simple day, thanks to careful reorganization of the medication schedule and allowing no time for anxiety to mount. "Why don't I do this more often?" I wondered, vowing without much conviction to make another attempt soon. We sang loudly and lustily together to old songs. I sang alone to the new ones. Michael's lovely deep voice is long gone and his singing is rather atonal now but I was happy to see he still pitched in occasionally. At one point I looked over to see his air guitar skills being exercised. What is it with guys and the air guitar? Also, since we are analyzing male psyches, what is it with guys - the middle-aged variety, that is - and very expensive top-down sports cars? I would say that ninety percent of such cars that we saw on the road were being driven by older men sporting baseball caps. The young ones, on the other hand, were all driving Batmobiles -  or reasonable facsimiles. I took great pleasure in blasting past a bald head in a Mercedes, I in my newly-acquired bright green Accent, dubbed Joyful Joyce after my recently deceased aunt who would have enjoyed a car named after her, I believe. Not that I'm shallow or anything...

On the caffeine-fueled trip home, an old Joan Armatrading song came up on my ipod, a song I first heard the year I met Michael and associate with him, especially the sexy basso profundo who backs Joan up in this recording, a voice that never fails to reach deep down inside and cause shivers of delight. I told him so as we raced down the road (I had kept my speed under control on the way there but couldn't resist zipping home). Unable to speak, he simply put his hand on my thigh, an old gesture that used to speak volumes.

"He loved it," our regular caregiver reported to me upon my return home this morning. The open road had beckoned and I didn't resist the urge despite the risks. And I didn't have a single moment of breathlessness all day.

The landscape has changed.

*Swimmer, personification of the Orontes River, Bronze, 2nd century CE