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Tuesday, April 30, 2013


Overwhelming sleepiness prompted me to indulge in a rare after-dinner cup of tea to get me through the evening. 

Meal-time had been wild and stressful - normal. Michael took too large a bite of pizza and had a rather spectacular choking fit, gagging, gasping, vomiting, coughing, contorting, convulsing, face turning impressive shades of blue, snot, tears and saliva pouring down his face. Once the drama had passed, he attacked his food. I admonished him repeatedly and impatiently to take small bites, chew thoroughly, sit up properly, concentrate on the task at hand - all wasted words. Halfway through, he suddenly needed to visit the bathroom, a normal break in every meal. I followed him in a minute or two too late: Accident all over his clothes and the floor. Then, on returning to the table, he finished his meal and stood up again, this time abruptly, knocking a half glass of apple juice over the table, the newspaper, the floor, but not quite onto the computer parked just beyond the flood. I flung the cloth napkins into the spreading pool to stem the flow then shuffled him off to the living room, ordering him to sit still while I mopped up the mess. He jabbed uselessly at the remote control. I felt frustration boiling beneath the surface, my voice edged with annoyance.

The tea erased my fatigue but left me wide-awake, now near midnight. I was consumed by an unfocused restlessness that made reading impossible but cupboard cleaning a must. I found a notebook stuffed into the bedside table I had emptied onto the floor. I sat down to flip through it. There were lists of Christmas presents purchased over the years. There were pages devoted to crunching money numbers in case of this or that eventuality. There were a few dreams recorded, now long forgotten. There were rough drafts of sad letters to my sister (did I ever send them?) and there was this, strangely and messily scribbled backwards in my notebook, not long after my sister died on April 19, 2011:

Resentment has no place in the human heart, least of all in the heart of the caregiver. Holding on to past grievances can fester like a poisoned sore, incapable of healing. One must empty that store of accumulated, perceived injustices to remain sane and stable through this job.

I rarely allow myself to pay a visit to that collection of complaints. I thought I had dealt with it all, had sealed the lid securely and pemanently. But, alas, now and again my ugly resentment rears its head and I must wrestle it back into the box.

It catches me by surprise, when I least expect it. Tonight, for instance, was an ordinary night, filled with the usual dumb television, lots of knitting and, happily, lots of phone calls from  kids and friends. So I was pretty content by Michael's bedtime. It wasn't until I started the nightly calming prayers that I was suddenly grabbed. I tried to focus on the words but I could only think of our aborted train trip (blogpost "Journeys", March 1, 2011) and how it was to have been the last opportunity to see my sister and her husband before they died. We had put life on hold and had spent two years waiting for a surgical procedure (blogpost "The Long Dead-End Road to Surgery", June 4, 2011) that was then abruptly cancelled just months before I finally booked the trip. But it was too late. Michael's dementia and psychosis were too advanced to endure such a journey. That too had to be cancelled.

I had been angry, frustrated, sad, all at once, but I don't think I cried much at the time. There had been far too much to deal with at home trying to stabilize Michael's mental health that was careening out of control and just survive the ordeal. 

But tonight it erupted. Hot tears stung my eyes as I imagined completing that journey and seeing my sister after all, holding her frail body, probably both of us crying. I'm crying as I write this.

Michael was oblivious to what I have had to give up for him, indeed what had had to be given up for years before. In a flash, just for a moment, I hated him, but just as quickly the anger abated and I imagined Ann herself. She calmed me; I told myself he wasn't responsible.

* F.S. Church,"Opened up a Pandora's Box", 19th century

Wednesday, April 17, 2013

A Sticky Interlude

It hasn't exactly been a harsh winter. It's just that we've been spoiled the past couple of years which have been exceptionally mild and snowless. Last year I was gardening at the end of April, the ground was so dry and warm. A normal winter can see snow well up to the end of April in this northern climate, with gardening happening in May if we're lucky. This is to be such a year, apparently, with a nasty snow and ice storm as recently as last Friday. Happily the thermometer shot up immediately afterwards ridding us of that minor accumulation along with most of the residual piles. Today the warm sunshine was a joy and if I squinted I could blot out the few remaining dirty white heaps in the yard. The birds were rejoicing and I felt restless.

Wednesdays are caregiver-less days. If Michael follows his usual pattern of a long post-prandial morning nap, I can safely expend some of my energy and pass some of the long day with a workout. Afternoons are usually devoted to movies or napping but it seemed too fine a day to waste it indoors. Since a walk beyond the end of the driveway is usually out of the question for Michael now, and the muddy road conditions were not allowing a wheelchair stroll, a ride in the car was the best I could think of beyond sitting on the porch shivering in the spring air. 

After a hasty lunch, I hurried Michael into the car. A good deal of focus is required for this job because he can easily become distracted and diverted by a wallet, a shoe lace, a pattern on the carpet. I didn't quite shove him out the door.

I didn't have big plans. Just up the highway to the next town, stop for a coffee then hurtle back down the road to home. An hour in total is about the limit to Michael's stamina and my patience. A curious idiosyncrasy of his condition is that wherever he is seated, after a few minutes he always starts to list heavily to his left. Many are the times that he's nearly tipped over his wheelchair as he slides sideways, especially if the intricate design of the carpet becomes a fixation. On the couch he often ends up with his head on the seat, glasses askew. But in the car this poses a special problem. This tilt lands him nearly in my lap or at the very least blocking the stick shift in my tiny car. I have developed an odd driving style where I give him a healthy jab and a push with my right elbow to clear him out of the way, a gesture that is only effective for a few minutes and has to be repeated dozens of times during a short drive. It gets old very quickly.

But my usual reluctance to take him out was trumped by my restlessness. Off we sped with Simon and Garfunkel, Eagles of Death Metal, Adele, Foo Fighters and Eric Clapton - to name but a few - as company. We both sang even though Michael has lost his lovely voice and no longer knows the words.  Garbled and monotone best describe his new style.

Our destination was the recently opened Tim Horton's doughnut shop in the neighbouring town. No way could I consider going inside so we pulled into the drive-through for take-out then turned into the parking lot. When I had asked him if he wanted coffee, Michael was unable to make a decision but he was precisely articulate in his request for doughnuts: Two apple fritters, please. I opened the windows and enjoyed the view of the tall pine trees bordering this country coffee shop. I looked over at Michael to see him trying to shove both fritters into his mouth at once since they were stickily glued together. I reached over to separate them for him. They were gone in minutes. Though it could have been the caffeine now surging through my bloodstream, I felt an immense flow of affection for my obviously happy husband.

I cleaned him up then pulled out of the parking lot. We were quite close to the nursing home I had visited just last week, and for a split second I thought about turning right to go farther up the highway to show Michael where I might have to send him one day, just to plant the seed. But he was humming tunelessly at this point, starting his inevitable slump into my lap, sticky but content. Why ruin a great afternoon with the likely panic that detour would cause? Instead I turned left, turned up the volume and drove home. 

Tuesday, April 9, 2013

The Other Side of the Mirror

I pulled into the drive-through for a much needed coffee. I was suddenly feeling very tired on this sunny, spring day. Tired and sad. I got my caffeine boost then pulled back onto the highway, jacked up the music and shifted up to sixth gear once at full speed, several notches above the allowable speed. I didn't care if I encountered a speed trap today.

I can't do it; my high speed conclusion.

I had arranged to meet my social worker at the local public health office about a half hour drive north of our home, a scenic highway drive through the countryside. This office is attached to the nursing home serving our area and I was to have a tour of the place.

The social worker had been almost excited when I contacted her about four weeks ago to discuss my options for respite care. Nearly breathlessly she told me about this local nursing home that offers up to two weeks of respite at a time for the laughable cost of $25 per day. That's socialized medicine for you in this wonderful Canadian province of Quebec. All I needed to do was give her a call when I was ready to arrange a visit. Why I didn't arrange it then and there I don't know. I had to think about it, I suppose, wrap my head around the idea.

Two weeks ago I did just that. Today was the day. I walked in; my social worker was waiting for me and greeted me warmly. She ushered me into her office to have a brief chat before going upstairs to see the facility. We talked about my concerns; she filled me in on medication requirements. We discussed strategies for managing the inevitable panic and psychosis and maybe even aggression that would overwhelm my fragile husband if I were to hand over his care for a short- or long-term visit. I put forward my extreme reluctance to do this.

The day before, having been alerted by the social worker, Michael's doctor called to update his medical file in preparation for an immediate visit if I need it. With that completed very little stands in my way of a wild vacation if I so choose. Everyone is working hard to make this happen for me and for that I am very grateful. The fact that I am digging in my heels is not because I am getting no support. I couldn't ask for more.

Our initial chat over, we climbed the stairs to the second floor where a 32 bed facility exists for the region's aged and infirm. I have visited many such places in the years of caring for my parents and Michael's so I have no illusions and very low expectations. I was prepared. A big red button had to be pressed to open the locked security door at the top of the stairs before we could enter.  I walked through to another world, the other side of the Looking Glass.

The first thing that hit me was the familiar smell of every such institution I've entered: feces and urine. The second thing was the inescapable fact that this was nothing more than a hospital with its institutional concrete walls, dull paint, fluorescent lighting, hand rails, nursing station, uniformed staff and, hiding just beneath the fecal smell, the industrial cleansers that might mask but never eliminate that ubiquitous odour. The common area in front of the central nursing station was filled with wheel chairs, white heads nodding sleepily, slippered feet, haphazard clothing and bathrobes, drool. Life was at a standstill. The only sound in this full-to-capacity institution was the quiet, low-volume drone of multiple televisions with a glassy- or droopy-eyed viewer before each set. Only one resident was ambulatory but his face sported a crazy, leering mouth, a blank stare. The newly added gazebo off the cafeteria that offered a calm pastoral view and fresh air was desolate and empty on this sunny, warm spring afternoon.

L. showed me the individual, private rooms whose main attractions are large sunny windows, one side of the building overlooking an elementary school yard and the parking lot, the other a not less attractive back view but with no action. Everyone wants the school view apparently but from what I witnessed, nobody was looking out any windows to the world outside. These rooms were well appointed with built-in drawers and cupboards and were identical in every way except for the brightly coloured blankets and bedspreads on each hospital bed. Some rooms had a picture or two tacked to the walls and every room had the resident's full name typed on a large poster and taped to the door, a memory cue for each resident I assumed.

I was fighting tears while struggling to remain cheerful and positive as I asked all my questions. L. answered them all well or consulted with the nearly unilingually French-speaking head nurse if she didn't have the answer. My biggest concern was ratio of caregiver to patient: approximately 1:5 on a good day. My social worker admitted it wasn't a question often asked which surprised me since most of these people looked like my husband whose needs are great and often keep me very busy. And that's when he's calm and relatively happy. Representing this publicly run facility, she at least didn't try a hard-sell job on me, unlike the for-profit retirement facilities whose slick websites and zealous sales-reps paint a very rosy picture of extreme old age that can lull you into a false sense of calm and well-being. I've detected the body-function smells in most of those places too but they are much prettier and offer fantastic outings even though their caregiver/patient ratios are often worse than their government-run sisters. Bottom line is obviously their main concern.

We shook hands as I departed. I told L. I might be able to manage a night only, at least at first. She agreed that was a good approach and she assured me I could call to talk if I needed to. No pressure, thank God.

But as I pulled onto the highway, my fatigue hit like a boulder. Coffee was definitely in order. When I finally entered my warm home, Michael was seated at the table with tea, cookies and the newspaper spread messily before him. He was gazing out the window calmly and dreamily while my wonderful caregiver buzzed cheerfully around my kitchen, laughter and warmth in her voice. Relief and happiness wrapped around me. 

No, I'm not ready.

*John Tenniel's illustration from Lewis Carroll's Through the Looking-Glass, and What Alice Found There (1871).