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Tuesday, January 24, 2012

Be It Resolved.

It's January and there has been a lot of snow over the past few weeks, some of it encrusted with a layer of ice requiring extra effort to remove it. Bitter winds. Playful dog getting in the way. Arthritic fingers throbbing from the repeated abuse of shoveling. Wondering if I can, if I want to, keep up the work on this house, my home, with a full time caregiving job. Winter is always a challenging time, isolation sometimes overwhelming especially with fewer days of respite; most weekends, some three long days, are the hardest with often no human contact other than the telephone/computer variety. Michael is weaker, quieter, crazier these days, occasionally breaking free in dangerously cold weather to flee down the driveway, inadequately dressed, escape all too easy out a basement door to the outside when I am distracted. I am amazed how he can go from a near-comatose state sprawled out on the couch to full mobility, full speed escape even now. Going out together on outings is more difficult than ever or maybe just in my head, so we don't. Car rarely leaves the driveway. Only 80 km logged since Christmas time. Great for the environment, not so great for state of mind.

My internal debate has resumed, if it ever stopped, always more fervent at this time of year: Be it resolved that Michael's care is better at home than in a care facility. Arguing volubly "For" is Claire the Ardent Caregiver. Arguing "Against", with far less conviction to make a cogent argument on her own behalf, is Claire the Tired Wife. Here are the questions being lobbed with some force from the Pro Side:

Who would do nightly prayers with him, an essential part of a calm night for him?

Who would patiently (but only after a deep breath) get up to the clanging of his whistle-alarm in the night to reassure him that all is well?

Who would tailor his medications to his needs rather than adhering to the strict schedules of an institution?

Who would allow him to walk as freely as he can in the house despite many falls, not worrying about litigious action?

Who would be there to rescue him from the obstacles of the television remote control, an act repeated many, many times each day?

Who would be there to monitor the subtle cues and clues he gives each day, often silently, a language that has taken me this long to decipher? Clues that tell me he is in distress when he cannot speak. Cues to his need for medication or assistance right now. He would never be able to figure out a simple call button to summon help, a man who can no longer use the telephone, remote control or any other electronic device.

Who would make him his favourite foods when he will eat nothing else, prepare a cup of tea or a snack at odd times of the day? Who would monitor his digestive functions as closely as I do?

Where would the loving, loyal dogs be who frequently demand that he pet them and give them attention, often unlocking a trance he has fallen into?

Where would all his familiar touchstones be that keep him as grounded as he can be these days? Things like the familiar trees in the front of our house that he gazes at for long periods, watching all the life therein. Or just watching the passersby on our road, seeing people come and go.

The answers to all of these questions very strongly support the case for Michael to stay put at home. Add to that the fact that I have seen life up close in an institution. I know how it goes. They are not bad places, and they provide a valuable service for those who have nobody else to care for them or whose care needs are impossible to manage at home. But they are less than perfect. They are chronically understaffed. Residents, especially those with mobility problems, spend long periods of time alone in their sterile rooms often in soiled diapers. If dementia is an issue, a resident like Michael might not even be able to understand how to summon help if needed. There are often residents who are coping with personality changes from the ravages of Alzheimer's, making them aggressive, sometimes violent and a very real threat to others. It can be a terrifying experience for many. I would guess that a lot of calming medication is used for the residents and maybe even the staff.

The guilt I feel at even contemplating such a decision is overwhelming and I know in my heart that life won't necessarily be any easier for me either.  I know myself too well. If the staff in a care facility call upon me to help out - and they would if past experience is anything to go on - when Michael inevitably steps over the cliff into full insanity, I will step up to ease his pain and theirs because he can be completely unmanageable, even violent. I could find myself at his side all the time because I know I am the only one to calm his panic unless staff keep him permanently and heavily sedated and restrained. In the past, restraint has meant tying him up in bed, flat on his back unable to move for hours on end, or tied up in a chair from which he attempts to escape, always harming himself. Yes, I might have the freedom to do a few things by myself without requiring someone on board here at home, but I will be on the road all the time traveling the considerable distance up the highway to help out with his care. Many have argued that surely Michael would adjust.  All past experience when Michael has been hospitalized has shown that his mental condition worsens the longer he is incarcerated. I could only expect the same in a nursing home.

Maybe I need to consider a move to ease the frustration of balancing onerous caregiving duties and home maintenance. But the effort required to even think the thought is exhausting. And there is no accommodation in our community that would suit his needs; no condominiums, no apartments, no accessible housing with small, low maintenance yards. This house suits him perfectly, if only I can manage. I would have to leave the community altogether to find anything better and that I am not ready to do yet.  My friends are here, my support network. We are well located next to amenities making shopping for the essentials quick and easy, my volunteer work just steps away. These considerations do not even include how such a huge change - any change - would inevitably push Michael over the edge.

Besides, I don't want to escape my home, just, some days, my situation. To not hear the incessant crashes to the floor with almost every step he makes, a sound that most of the time doesn't even elicit a wince from me but on occasion I cringe and brace myself for what must be severe injury.  It never is. At home he has fallen thousands of times throughout this disease. Thousands. But he is still independent enough to make that one small decision in his life, to get up and move if he wants to even if it means hurting himself. If he were in an institution, he'd never be allowed to fall so much. Liability issues would override.

Another consideration is the cost of institutional care. I can afford it, I think, but it will mean more fiscal restraint to manage the high cost of care.  My round-the-clock services are free. We have two weddings this year and have committed a small, but not insignificant, amount to each offspring to help with their costs. We live on a reasonable pension but I would have to consider re-entering the workforce which, after being out of it for 30-plus years, is daunting to say the least. A degree in English Literature has never been a ticket to a lucrative job, even less so added to so many years of unpaid domestic work. I am severely out-of-touch with new technological advances in the modern libraries, a revolution that was just beginning when I left the profession.  Besides, in those days, a degree in English was considered enough education for the job.  I'd have to go back to school to qualify now. UGH. I don't think I'd enjoy that any more than when I did it the first time, not to mention the stress it would add.

Whether I ever take the plunge and make that phone call to place Michael remains to be seen. For now the debate continues as a loud chattering in my brain where it must stay. I know where many friends and family members stand on the issue, so sharing the conversation at this point would serve no purpose. I trust I will know on my own when it's time, when the noise is finally silenced, the guilt assuaged. For now Michael's needs supersede my own.

For now I will simply change the topic: Be it resolved that we are both better off maintaining the status quo.

* Lovis Corinth, Vater Franz Heinrich Corinth auf dem Krankenlager

Wednesday, January 18, 2012

Of Navies and Armies

"Navy," he said, then a long pause. It was one of his only really coherent words of the day, few of them ever strung together into a meaningful sentence.

"Navy," again.

"Army," then a long thoughtful gaze out the window. The newspaper was spread before him so I peered over to see if there were any clues in the headlines. Maybe the recent cruise ship disaster in the Mediterranean. No. Nothing.

Michael worked as an engineer for Canada's Department of National Defence for most of his career, so topics about the armed forces often came up in our conversations. He has a strong reverence for our men and women in uniform and, until recently, never missed a November 11th Remembrance Day service in all our years together. He had never had any desire to be a military man himself, perhaps after the years of wandering from post to post with his dad in the Canadian airforce. He said once that he had craved stability as a child so, when the family finally settled in the Ottawa area more than four decades ago, Michael had no desire to go elsewhere. Deep roots were made.

I listened quietly, not making any attempt to prompt him or question what he was trying to say. I remained uncharacteristically silent.

"More seamen," he added minutes later, continuing his pensive and somewhat sad stare out into the snowy front yard. He seemed far away but his eyes looked intelligent, not dazed and glazed as they often are. Clearly he had something important on his mind.

If only he could express what is locked away inside. I haven't had a real conversation with my husband in a very long time, years, in fact. I miss him.

* Landing of Spanish troops in the Bay of Mos, the island of Terceira, Azores (26 and 27 July 1583). Mural Site at El Real de San Lorenzo de El Escorial, Madrid, Spain.

Friday, January 13, 2012

From Out of the Blue

Michael already in bed, I was relaxing with my kids on Boxing Day after a hectic Christmas. Your email came out of the blue even though a few weeks earlier I had remembered that you might be in Ottawa over the holidays. But with all the craziness of the season, I'd forgotten, put it out of my mind.

As I read it I couldn't help but smile; my daughters picked up on it.  I gave a mild response about an old friend in town with his wife. That night both you and she inhabited the blue, ethereal screen of my subconscious, a mildly anxious, crazy romp with a library as the backdrop - maybe one of the few I worked in during my short life as a librarian - and Kenny Wayne Shepherd or the Black Keys, or maybe both, as the improbable musical overlay.

Back and forth we wrote the next day, setting up the coffee meeting for that afternoon. I was on my way into town to drop off Anna at the airport. Serendipity. How about then, on my way back? So it was set up, as easily as that, with Emily at home to look after Dad, companionably watching a hockey game.

I was so nervous. Why? I don't know. What does it matter? We had met nearly forty years ago at school, were good buddies, and I hadn't seen you in well over thirty, possibly won't ever again. As I drove to the airport I didn't think about it much; I was involved in conversation with my daughter who was on her way home, to be terribly missed here at our home, as would her siblings. But once she was on her way and I was making my way back into town to our meeting, my stomach was tight with anxiety. Would you be alone or would your partner be there too? Would conversation flow after all these years? We'd only reconnected recently and hardly know each other now.

I parked the car just as you were texting me, warning me about turning restrictions in the area. You forget that I've lived here a long time but I appreciated your concern. At least I already know you are there before me. I'd hate to have been there first, waiting alone, cradling nervousness.

I see you before you see me. You look just the same, easy to identify after decades. And there is your wife. I think I am relieved. You are looking around, not yet seeing me.  I think - I imagine - you look anxious too.

I wave just in case I am unrecognizable after years of childbearing and caregiving. You see me. An affectionate hug. A handshake with your wife.  I make sure to make eye contact with her and keep the conversation light and equally balanced, not wanting to cause discomfort. Some awkwardness but not too bad. For a few seconds at the beginning I feel thrown back to those waning days of adolescence; I want to jump on you with childlike abandon, punch your arm, pinch your cheeks, but then conversation turns to Michael and I am again too much the adult. I can be uncomfortable talking about all that unless it is someone I know very well.  I prefer to write about it, let people read rather than listen. The oral story seems more of an imposition than the written version. I have to see and take responsibility for the horror and sympathy breaking onto people's faces as they grasp the enormity of this saga, "scary stuff" as you described it.

An hour later, it seems time to wrap it up. Both women look at our watches nearly simultaneously. I could spend hours talking to you both without the constant reminder of Michael's needs before me, but we are grownups with commitments and it is time to leave. Home beckons. It is a warm good-bye with both of you; your wife is lovely and I am glad you are happily settled. Is it a forever-farewell?

The drive home, the whole unlikely encounter, is something of a dream, an interlude in my life, soon to be absorbed into the day-to-day grind, perhaps to disappear into the depths of the subconscious where all dreams go. A few details will remain, a vague impression of a happy sojourn.

Yet I sob all the way back. Lost and found friendship, only to be lost again? Vanished youth? Sadness over my return to a house emptying of family, leaving me essentially alone? Maybe, but I think it is more my overwhelming desire for a normal life, whatever that is, to be able to lightly agree to a coffee date without days of planning, to interact with new, interesting people and hear about their lives without an eye and an ear on Michael all the while. That and my usual undercurrent of sorrow and grief that only wells up when triggered by other emotions.

I arrive home, snap back into the here and now, and I'm fine again. Life continues.

(Painting by Pierre-Auguste Renoir, Sunset at Sea)

Monday, January 9, 2012

Technological Breakthrough

The photograph above represents a major technological breakthrough for me. Something of a Luddite, I have focused simply on the written word, too nervous to attempt anything more exciting. When I recently syndicated with a website to promote my blog, the editor urged me to add illustrations to my words. Frankly, despite the fact that I was incapable of doing so, I really didn't see the need for anything more than the printed word. That was enough for my challenged brain.

But this photo is a favourite and I want to share it. My good friend Anne and her two kids, now all grown up, have spent Christmas with us for many years since her husband, their daddy, died suddenly in 1995 when the children were very young. They are family. Every year Anne takes a family photo, this year being no exception. Actually it was her son Jesse (bearded, in grey shirt at the front) who set it up this year by perching the camera on our staircase then bolting back into the photo in time for the shot. He is the reason we are all beaming so broadly since seconds earlier we had all been screaming and laughing loudly, cheering him back into the scene during his mad dash.

Jesse's beautiful sister Lily sits to his right, holding his arm. Anne, dressed in a red cardigan and as close to me as a sister, even sharing her name, sits next to me. I am in the back wearing purple. Darren, soon to marry Anna, sits to the left in the dark sweater with a sisterly arm draped over him. My four children: Emily in the back; Laura in the middle in front of Anne; and right in front of me, William and Anna glued together as they always were when she was ten and he an infant.

There is my brother with his wife who join us for Christmas when they can. They are seated to the right of the photo, Linda in front of Peter. Of my immediate family of birth, Peter is my only surviving family member after our father, mother, sister and her husband all died over the past eight years (though if you look very closely you might see they are with us in photographic presence on the shelf above). He has been my rock as his name suggests.

Missing and missed are Michael's family, celebrating a quieter Christmas together elsewhere; our son's fiancee Rhian, traveling with her family; and Laura's boyfriend, another Mike, yet to be introduced to her siblings. And, of course, two exhausted old dogs who spent their day trying very hard to be well behaved around the mischievous teasing of our son's visiting kitten.

Then there is Michael, seated to my left, my arm hovering protectively around him.  My handsome man who has to work so very hard now to produce that smile, the smile that used to be so warm and quick, now reduced either to a leering contortion while in the throes of dyskinesia,  or a rigid, blank mask when the medication fails which is most of the time.

It was a rough day for him with all the people, all the noise, but he made it through despite a few difficult and frightening episodes before Christmas. I was so busy I don't even remember if he had to retreat for a nap; the kids take on much of the Dad-care on Christmas day.

It was a day of animated conversation and wild, physically interactive video games that saw most of us leaping about in the same space that we occupy in this photo, a very welcome and lively interlude for me, so completely different from our normal day-to-day existence. It was a wonderful day, immortalized in this photo. And I can share it with you because I finally had the courage to figure out how to do so.

Sunday, January 1, 2012

Ringing in the New Year

Three a.m. I am awoken from a deep untroubled sleep, a sleep that until recently was a rarity.  I was about to make a world-changing speech, on what I cannot remember, but the dream was probably inspired by Johnny Depp in the movie "The Libertine", a 17th century period piece where he plays John Wilmot, Earl of Rochester, who both saves (with a brilliant political speech) and threatens to ruin Charles II.

The watching of the movie to bring in the new year was an executive decision on my part. NO MORE HOCKEY. A friend had loaned it to me and it was a good choice. What movie with Johnny Depp isn't a good choice even if, towards the end of this film, his face and body are ravaged with advanced syphilis? He was a libertine after all.

We did not ring in the new year the conventional way by propping open our eyelids until midnight and toasting the occasion. No, a normal boring night for us, but I had a new eReader to look forward to in my room.  So with Michael safely tucked away, I indulged in a new book, drifting off to sleep well before midnight.

Then the clanging began. Not the pealing of bells but the din of metal on metal, Michael's whistle hitting the metal bed frame, an overly efficient means of summoning my help.

I dragged myself downstairs to see to his needs which at first seemed unclear. He was rubbing his abdomen and then was able finally to tell me he needed to use the toilet.  There was no way I was going to be able to get him into the washroom safely in his by now frozen state so I hoisted him up in bed and readied him for the commode, situated conveniently right next to his bed.

A bit of history: For ten days, Michael suffered a particularly stubborn bout of constipation, spanning the entire week before and well into the week after Christmas. It is often his way when anticipating any change in his routine but this was worse than usual.  It was becoming very alarming especially since I had resorted to powerful laxatives and even, in desperation, an enema on Christmas Eve (yes, we have unique ways of celebrating the holidays in our house), all to no avail. I was putting off calling the nurse to come and administer the garden hose of enemas. No exaggeration. Well, maybe a little. I'd wait till after all the kids had left, as much for his own privacy as respect for their sensibilities. Besides, despite the slow down, he continued to eat. In fact he packed away a pretty impressive amount of food on Christmas day, all without any discernible discomfort. I was marvelling that all the measures I had taken were so ineffective.

Or so I thought.  Apparently his body was just waiting for an opportune moment of quiet, which is a very rare commodity in our house over the holidays.  One afternoon, when only the two of us and the two sympathetic dogs were at home - Wednesday, I think - the action began. I can tell you over the days between Wednesday and last night, he more than made up for ten days of inactivity.

But apparently not completely. Three a.m New Year's day was the Mother Load. Once I woke up enough to take in the whole situation, I couldn't stop laughing. Nor could he, despite his discomfort and Parkinson's rigidity. What else can you do at three in the morning when faced with a very large offering of human waste?

I'm taking this as an auspicious sign for 2012, an emptying out of the bad of 2011. A bit like rain on your wedding day, is how I'm looking at it, but a tradition I'm not wanting to become established.

Happy New Year. May you all begin 2012 as cleanly as Michael. Out with the old; make room for the new. Clean slate. Tabula rasa. Empty vessel.