Football Fever has descended upon our household; it is Grey Cup day, the final game of the Canadian football league and a much anticipated time of the year for many football fans. I am immune to this particular illness but must tip-toe around the afflicted one so he can watch with undivided attention.
It is a good sign that Michael has listened well enough to the endless television pre-game coverage to know that today was THE day. It was unavoidable, I guess, given how many hours a day the television is tuned to a sports channel. But I had hoped that he might not notice, that I could slyly divert his attention to something else like a movie or a crappy television show. No such luck.
Normally I can tune it out and immerse myself in my knitting. I have created quite a mountain of knitted works this fall - that's how much time I have on my hands - but tonight neither my brain nor my hands seem to want to work. A piece I was working on had to be ripped out repeatedly to the point that I snarled up the yarn badly enough and had to break it off, essentially ruining the piece. I threw it down in disgust and impatience, abandoning it completely. To top it off, one of my slender bamboo double-pointed needles snapped, crippling my progress. All the while, the players' atavistic chest-thumping and the crowd's rowdy cheers blaring from the television sharpened my edgy nerves. My eyes burned from the concentration on my fine stitches; I've given up.
It is rare for me to abandon a project. I hate to do it. The last time I did it was the shawl I started on our ill-fated train trip out west to see my sister and her husband, both very sick at the time - the trip that had to be abandoned suddenly for a hasty return home. It was just a few weeks ago that I picked up that piece again and reworked it into something else, closing the door on that dreadful escapade once and for all.
I am hoping that all I need to do is walk away for a while, divert my brain elsewhere. I know I'll probably be able to pick up my knitting again tomorrow, start fresh on a brand new project. But my restlessness tonight is disturbing, preventing focus. I can feel mild anxiety creeping in as the weather worsens and winter hearkens. If I fail to get this gnawing feeling under control, it will be a very long winter.
Blog Farm
Sunday, November 27, 2011
Sunday, November 20, 2011
Room with a View (or at least a crystal ball) - apologies to E.M. Forster
I stepped outside this morning to retrieve the daily newspaper from the box at the end of our driveway. Sometimes, on days without respite and therefore no opportunity for a walk with the dogs, this is my only foray outdoors, especially if the weather is lousy and Michael is particularly immobile, unable to even poke his head outside. On those days I hunker down and watch movies, knit, and nap between the various household tasks that must be done everyday, boring things like meals, dishes, laundry and, of course, whatever Michael's many needs might be beyond those basic domestic tasks. On those days sometimes the only utterance from Michael is to mimic the yawns, whines and other chirps emanating from the two dogs.
This Sunday morning feels like it could morph into one of those sluggish days. The sky has an ominous hue of dark grey to the west, the wind is murmuring, hinting at pent up rage, and the air feels oddly heavy and summery despite the cooler temperature, almost as if a thunderstorm looms. It is an appropriate measure of my mood, that I could have a meltdown but I'm just too tired to do so, preferring the prospect of wrapping myself up and retreating from the world, if only I could step away from the essential tasks at hand.
Michael's 87-year-old mom went home yesterday. I bowed out of that task, insisting to her that other family members accompany her home, fill her fridge and make sure she was comfortably settled. She phoned as usual this morning to report her immense relief. She sounded happy. Fingers crossed. But I could feel my energy suddenly draining out of me, perhaps from my own relief of being able to stand down for a while. It has been an intensive three months, culminating in sleeplessness and high emotions this week as we all faced this next step of her life - her desire to resume "normal" activities. All have agreed to step back and let things unfold, however that may be. More fervent crossing of fingers.
That aside, though murmuring like the wind in the background, I can take stock of my reserves. If only I could see into the future and know how much more energy I need for this job. Not that I want it to be over - though I have to confess there are days when I wish it were so - but it would be nice to have a crystal ball to plan and prepare for what I can only imagine will be a difficult time ahead. Will I be able to see this through to the ideal end of Michael spending his final days or years comfortably at home? Will I have to muster up the strength and courage to hand him over to others to care for him? That is a prospect I dread, especially as I have had the opportunity to watch a cousin attend to her frail, anxious husband in the same retirement home where Norma convalesced. This woman, who makes daily visits and stays overnight on weekends, looks worn out, stressed out. The placement of loved ones into institutional care doesn't necessarily lessen the load, I've learned. And it can most certainly add to the guilt that all caregivers seem to carry.
Obviously, I cannot map out the future. Can anyone? I have a few big hints how this story will end but I can't cheat and flip to the last page, something I admit to doing when I read a book where it becomes too difficult to go forward without assurances of the end results. I just have to continue to plod through what is becoming a story of epic length and hope that the stormy plot twists aren't too dark and ominous.
This Sunday morning feels like it could morph into one of those sluggish days. The sky has an ominous hue of dark grey to the west, the wind is murmuring, hinting at pent up rage, and the air feels oddly heavy and summery despite the cooler temperature, almost as if a thunderstorm looms. It is an appropriate measure of my mood, that I could have a meltdown but I'm just too tired to do so, preferring the prospect of wrapping myself up and retreating from the world, if only I could step away from the essential tasks at hand.
Michael's 87-year-old mom went home yesterday. I bowed out of that task, insisting to her that other family members accompany her home, fill her fridge and make sure she was comfortably settled. She phoned as usual this morning to report her immense relief. She sounded happy. Fingers crossed. But I could feel my energy suddenly draining out of me, perhaps from my own relief of being able to stand down for a while. It has been an intensive three months, culminating in sleeplessness and high emotions this week as we all faced this next step of her life - her desire to resume "normal" activities. All have agreed to step back and let things unfold, however that may be. More fervent crossing of fingers.
That aside, though murmuring like the wind in the background, I can take stock of my reserves. If only I could see into the future and know how much more energy I need for this job. Not that I want it to be over - though I have to confess there are days when I wish it were so - but it would be nice to have a crystal ball to plan and prepare for what I can only imagine will be a difficult time ahead. Will I be able to see this through to the ideal end of Michael spending his final days or years comfortably at home? Will I have to muster up the strength and courage to hand him over to others to care for him? That is a prospect I dread, especially as I have had the opportunity to watch a cousin attend to her frail, anxious husband in the same retirement home where Norma convalesced. This woman, who makes daily visits and stays overnight on weekends, looks worn out, stressed out. The placement of loved ones into institutional care doesn't necessarily lessen the load, I've learned. And it can most certainly add to the guilt that all caregivers seem to carry.
Obviously, I cannot map out the future. Can anyone? I have a few big hints how this story will end but I can't cheat and flip to the last page, something I admit to doing when I read a book where it becomes too difficult to go forward without assurances of the end results. I just have to continue to plod through what is becoming a story of epic length and hope that the stormy plot twists aren't too dark and ominous.
Friday, November 18, 2011
The Walk
It is a route I have taken hundreds, no thousands, of times. In the early days of puppy ownership, I made the trek twice a day to wear out an exuberant collie-shepherd mix hound whose boundless energy wreaked havoc on our home if I didn't. Then, in 2004, my sister fell very ill with the cancer that eventually took her last spring. Michael was not yet completely disabled with his disease, but, in the event of my presence being required by my sister's side in British Columbia, I knew he would not be capable of the required twice-daily dog walks. It was then that I invested in the underground fencing system that allowed the dogs complete freedom within our acre property, charging around after the many squirrels in our yard and barking joyously at passers-by, eliminating the need for those walks.
But I came to love them. I no longer needed to go for the dogs' sakes, but every morning, before Michael arose from bed, I would slip out for up to an hour and immerse myself in the calm and solitude of the nearby forest, Woof and Calvin at my side. It became my very necessary escape from the mounting caregiving duties - Michael was already on permanent leave from work, no longer able to meet his own workplace duties.
Most mornings I briskly covered the two or more kilometres. During the summer I indulged in a dawn swim in the river, a true escape, all completely alone. It was the time for the introspection and meditation necessary for me to remain stable throughout the day.
The past two years, with Michael needing constant care, I can only embark on my walk when my caregiver is present or, if it's the weekend, a generous friend who has volunteered to drop in and watch sports in silence with Michael if no offspring are home for a visit. That means, most weeks, I average about four walks, maybe five. It is a priority. Every Monday morning, if there are no other duties for me to attend to, my best friend joins me and we solve the world's and our families' problems together, accompanied by the calm of the natural setting she too loves. It provides the backdrop to my connection to God and peace.
So this week, with my heart heavy, it was the one time of the day when I could escape my extreme anxiety and distress. I am not good at expressing my emotions orally; I always resort to the written word. On writing my last entry, I was venting overwhelming frustration, knowing full well that the involved parties would read my diatribe. It ate me up; it caused terrible unrest in the family, perhaps permanent damage, and I have since deleted the post. I apologize to my readers, as I have done to the offended parties, for any discomfort I caused. It is not usually my way.
But thank God for the few moments of peace my walk afforded me.
But I came to love them. I no longer needed to go for the dogs' sakes, but every morning, before Michael arose from bed, I would slip out for up to an hour and immerse myself in the calm and solitude of the nearby forest, Woof and Calvin at my side. It became my very necessary escape from the mounting caregiving duties - Michael was already on permanent leave from work, no longer able to meet his own workplace duties.
Most mornings I briskly covered the two or more kilometres. During the summer I indulged in a dawn swim in the river, a true escape, all completely alone. It was the time for the introspection and meditation necessary for me to remain stable throughout the day.
The past two years, with Michael needing constant care, I can only embark on my walk when my caregiver is present or, if it's the weekend, a generous friend who has volunteered to drop in and watch sports in silence with Michael if no offspring are home for a visit. That means, most weeks, I average about four walks, maybe five. It is a priority. Every Monday morning, if there are no other duties for me to attend to, my best friend joins me and we solve the world's and our families' problems together, accompanied by the calm of the natural setting she too loves. It provides the backdrop to my connection to God and peace.
So this week, with my heart heavy, it was the one time of the day when I could escape my extreme anxiety and distress. I am not good at expressing my emotions orally; I always resort to the written word. On writing my last entry, I was venting overwhelming frustration, knowing full well that the involved parties would read my diatribe. It ate me up; it caused terrible unrest in the family, perhaps permanent damage, and I have since deleted the post. I apologize to my readers, as I have done to the offended parties, for any discomfort I caused. It is not usually my way.
But thank God for the few moments of peace my walk afforded me.
Wednesday, November 2, 2011
Wealth and Poverty
I spent last weekend at my favourite place. Thanks to a few volunteers and my usual caregiver, who held down Fort Michael for me, I was able to help out at the monthly sale of the Chelsea Nearly New Shop, housed in the basement of the local United Church, an old, slightly rundown but well-loved, well-used little church.
It so happens that this church, and therefore the shop itself, is right across the road from my house. It couldn't be closer, a mere minute from my doorstep. If it were otherwise, I most likely wouldn't be as involved as I have been. Our house is well-situated in our little village with a full grocery store and hardware store only a few steps farther than the church, or even closer if you dare cross the ditch over the now-rickety bridge that my son built many years ago. The proximity of these amenities means that I can complete the week's grocery shopping in less than half an hour with no travel time and, better yet, on foot with no gas consumption required. The hardware store is my preferred location to pick up furnace filters, plumbing materials and gardening supplies. I find myself increasingly overwhelmed in the big box stores like Canadian Tire, which I reluctantly have to visit on rare occasions if my little stores next door cannot help me. The closeness of these places gives me comfort and a sense of security, requiring little reliance on the car despite our distance from the city.
I have been thinking a lot about poverty and consumption lately with all the "Occupy Wall Street (or insert your city's name)" demonstrations. I haven't learned much about them, I must confess, but something about them makes me squirm for reasons I couldn't really identify at first. As I thought about it I realized that my personal style is not that of an "activist" who protests, sits in, camps out and speaks loudly. My preferred statement is made through direct action where words are not really necessary. I realized I don't want to focus on the perceived "evil" rich, most of them honourable citizens who contribute greatly to the economy and the advancement of our civilization through their accomplishments or their support of programmes outside their expertise. I personally have no issues with the rich. But I do have an issue with poverty. Whether the rich can be blamed for the existence of poverty is not for me to answer; I tend to think not. What does seem to be happening is a widening in the gap between rich and poor and that is where I would like to put my energies, trying to narrow that gap somehow. For the record, I do include myself and my husband in the category of the rich even though our annual income falls in the modest mid-range, not the soaring six-plus figures.
To that end of narrowing the gap, which I have no illusions that I can accomplish on my own, I belong to a faith that promotes the equality of all people, all races, all religions. It promotes the narrowing of that gap between rich and poor and embraces all humanity. Also I have recently thought a lot about broadening my charitable donations to include an organization that has international reach, another with a more national reach and finally my hands-on work at the Nearly New which is a decidedly local, grass-roots organization directly assisting those in need in our community both with financial aid and clothing. We too have a broad reach, giving to projects near and far, but our focus is mostly our community and the poor in our midst.
Our sales are wonderful monthly events spanning a Friday evening and four hours midday on Saturday. Our nearly-new merchandise is modestly priced, most things selling for under $4.00 with no tax. On a good weekend, like last weekend, we will make well over $1000.00 but we usually manage to raise at least a grand each sale. That's a lot of stuff when the average price for things is about $2.00. What strikes me at these sales is the diversity of our clientele. Being a small town, we all know each other pretty well and have a good idea of each person's relative wealth or poverty. But this store is not just for the impoverished. It has become "The" place to hang out and find incredible bargains. It is also the place to see all your friends, almost like a local pub except you can walk away with an armload of great "new" clothes rather than just a hangover.
The week before this sale our little community was shaken by tragedy. A couple of local teenagers died in a horrific car accident and then a few days later a little girl lost her life, her mother charged with her murder. We all know each other, at least peripherally. We were all stunned and saddened, especially those of us at the Nearly New who knew the mother and daughter. We are a poorer community for the loss of these young souls.
I was worried that our sale might be a sombre event, all of us grieving deeply for the senseless losses added to our own individual troubles. But I was amazed. It was, of course, bittersweet, people quietly, tearfully and respectfully reminiscing, but it was also a nearly joyous event, our hearts so heavy but reaching out in appreciation of each other.
It is a place where we can put aside our sadness and our troubles and be a community, laughing and crying together. It is a place to feel wealthy in our relationships while we directly contribute to assisting those less fortunate; with our overhead costs at nearly zero, every dollar spent is a dollar to someone in need. It is a place where I can step away from my role and isolation as caregiver for a while and feel connected to the world.
It so happens that this church, and therefore the shop itself, is right across the road from my house. It couldn't be closer, a mere minute from my doorstep. If it were otherwise, I most likely wouldn't be as involved as I have been. Our house is well-situated in our little village with a full grocery store and hardware store only a few steps farther than the church, or even closer if you dare cross the ditch over the now-rickety bridge that my son built many years ago. The proximity of these amenities means that I can complete the week's grocery shopping in less than half an hour with no travel time and, better yet, on foot with no gas consumption required. The hardware store is my preferred location to pick up furnace filters, plumbing materials and gardening supplies. I find myself increasingly overwhelmed in the big box stores like Canadian Tire, which I reluctantly have to visit on rare occasions if my little stores next door cannot help me. The closeness of these places gives me comfort and a sense of security, requiring little reliance on the car despite our distance from the city.
I have been thinking a lot about poverty and consumption lately with all the "Occupy Wall Street (or insert your city's name)" demonstrations. I haven't learned much about them, I must confess, but something about them makes me squirm for reasons I couldn't really identify at first. As I thought about it I realized that my personal style is not that of an "activist" who protests, sits in, camps out and speaks loudly. My preferred statement is made through direct action where words are not really necessary. I realized I don't want to focus on the perceived "evil" rich, most of them honourable citizens who contribute greatly to the economy and the advancement of our civilization through their accomplishments or their support of programmes outside their expertise. I personally have no issues with the rich. But I do have an issue with poverty. Whether the rich can be blamed for the existence of poverty is not for me to answer; I tend to think not. What does seem to be happening is a widening in the gap between rich and poor and that is where I would like to put my energies, trying to narrow that gap somehow. For the record, I do include myself and my husband in the category of the rich even though our annual income falls in the modest mid-range, not the soaring six-plus figures.
To that end of narrowing the gap, which I have no illusions that I can accomplish on my own, I belong to a faith that promotes the equality of all people, all races, all religions. It promotes the narrowing of that gap between rich and poor and embraces all humanity. Also I have recently thought a lot about broadening my charitable donations to include an organization that has international reach, another with a more national reach and finally my hands-on work at the Nearly New which is a decidedly local, grass-roots organization directly assisting those in need in our community both with financial aid and clothing. We too have a broad reach, giving to projects near and far, but our focus is mostly our community and the poor in our midst.
Our sales are wonderful monthly events spanning a Friday evening and four hours midday on Saturday. Our nearly-new merchandise is modestly priced, most things selling for under $4.00 with no tax. On a good weekend, like last weekend, we will make well over $1000.00 but we usually manage to raise at least a grand each sale. That's a lot of stuff when the average price for things is about $2.00. What strikes me at these sales is the diversity of our clientele. Being a small town, we all know each other pretty well and have a good idea of each person's relative wealth or poverty. But this store is not just for the impoverished. It has become "The" place to hang out and find incredible bargains. It is also the place to see all your friends, almost like a local pub except you can walk away with an armload of great "new" clothes rather than just a hangover.
The week before this sale our little community was shaken by tragedy. A couple of local teenagers died in a horrific car accident and then a few days later a little girl lost her life, her mother charged with her murder. We all know each other, at least peripherally. We were all stunned and saddened, especially those of us at the Nearly New who knew the mother and daughter. We are a poorer community for the loss of these young souls.
I was worried that our sale might be a sombre event, all of us grieving deeply for the senseless losses added to our own individual troubles. But I was amazed. It was, of course, bittersweet, people quietly, tearfully and respectfully reminiscing, but it was also a nearly joyous event, our hearts so heavy but reaching out in appreciation of each other.
It is a place where we can put aside our sadness and our troubles and be a community, laughing and crying together. It is a place to feel wealthy in our relationships while we directly contribute to assisting those less fortunate; with our overhead costs at nearly zero, every dollar spent is a dollar to someone in need. It is a place where I can step away from my role and isolation as caregiver for a while and feel connected to the world.
Saturday, October 22, 2011
Puzzled
I am addicted to puzzles. They are probably the only reason I continue to subscribe to the local city newspaper because I prefer to do them pen in hand, unlike my writing process where the computer screen suits me better. I'm not sure I'll ever make the jump to doing most of my reading online either since something strange starts to happen to my eyes and the screen not long after I start reading.
My morning ritual is to hop out of bed early, feed the dogs, fetch the paper from the end of the long driveway (no doorstep delivery in the country), check in on Michael (this is usually long before he needs his 8:00 am dose of medication), check my email and facebook, put the kettle on for tea, then scan the paper. I read an op-ed article or two but most of the news stories are old by the time my hands touch newsprint, news I've already heard on the CBC morning radio show. What I really want are the puzzles - all the puzzles. I attack them like a junkie on speed. My focus is complete and if I'm lucky enough, I have time to do them all before I have to clean, dress and feed Michael for the morning. There is nothing quite so delicious as a steaming mug of tea, a quiet house and the paper spread out all over the dining room table.
I start with the Ken Ken puzzle, mysteriously hidden away all by itself in the sports section. It's a variation of Sudoku, but usually a quick study, with wild claims to "make you smarter". I ignore the basic puzzle on offer and go straight for the advanced. I can usually, on a good morning, polish that one off in about three minutes. Then it's on to the full puzzle page where I start with the word jumble, generally pretty easy unless it's the Sunday paper. Following that I hit the cyberquote which is a coded quotation of a few lines by a noted Canadian. I've been doing those since I was ten when I used to dream about being a code cracker in some covert spy mission. I had a wild imagination, what can I say? Then there's the Sudoku which starts out really easy on Monday, hardly worth the effort unless I'm really bored, but works up to the killer by Sunday, the day most people have a bit of time to waste on such indulgences. I could use the challenge every day, I'm afraid, since I have nothing but time. Finally I do the crossword, which during the week is ridiculously easy but fun nonetheless. It's the weekend papers that really dish out the posers with the New York Times crossword as well as a brand new challenger called Kakuro - Ken Ken on crack. I have managed to complete that one only twice because it takes me a long time and I usually get drawn away to do something more important, unfortunately. One day maybe I'll master it and finish it before breakfast like all the others with the exception of the New York Times crossword which, if I have the time and the brain, takes an entire day to complete, often with a bit of healthy cheating.
So that's how I waste my time. They are like a drug I have to submit to every day. I don't exactly go into withdrawal if I miss them but I do enjoy the challenge. It's where I put my nervous energy.
It is very satisfying to see the end of something so quickly. It's a limited task requiring a set amount of concentration with a pretty strong guarantee that I'll see completion. No loose ends. If I get stuck, I simply walk away for a while, do another puzzle or something else entirely. Usually when I get back to it, suddenly the puzzle unlocks itself.
Conventional wisdom says these puzzles are good for guarding against dementia and general brain rot. I'm not so sure of that but I'll tell myself that's why I'm doing them. That sounds better than the pure addiction it really is. Michael used to kill those puzzles at one time but that didn't make the least bit of difference to what has happened to his brain. I don't believe for a second that if he had done a few more of them he'd be better today, just as I don't believe it when well-meaning souls used to tell me that maybe he just didn't eat the right foods when he was growing up. That's just too neat and tidy and simplistic, not to mention incorrect. If there is one thing I've learned, it's that the human body, especially the brain, is so complex that some days I think we haven't got a tiny clue what causes what; we are groping around primitively in the dark most of the time, with no neat, easy solution to most of our physical puzzles. So let's not make people feel bad that they didn't eat right, do enough puzzles or weren't adequately loved by their mothers.
It is interesting, and of course indescribably sad, to watch the rapid deterioration of Michael's cognitive skills. For a short while I was trying hard to stimulate his brain by attempting card games, board games, jigsaw puzzles, but quickly realized he just cannot fathom them most days. I got overwhelmingly frustrated, having to explain every single step he needed to play something simple like Yahtzee, a game I used to play with very young children with more success. The grid of a crossword puzzle confuses him and he ends up filling the squares with random letters. If the clue is read out to him he can sometimes come up with an answer, just as he can knock me down with surprise with an answer to a tough Jeopardy question. But he cannot work out a crossword grid. Even the simplest Sudoku baffles him just as very easy arithmetic sums do now. And this is a man who studied engineering and advanced mathematics, could blow anyone out the water playing games like Trivial Pursuit, and maddeningly blurt out the solution to the mystery three minutes into a complex crime show.
Things have declined hugely since the neurologist performed this very simple test on Michael nearly three years ago when he finally recognized that Michael's cognition was declining: Among other tasks, he asked Michael to draw the face of an analog clock, apparently a basic test for cognitive decline. Michael wasn't even that bad yet, but I was shocked when he could not do it. As I sat there next to him I wanted to whisper, "Just look at your watch," but it didn't even occur to him to do so. I knew I couldn't help him out of this jam. After the appointment he came home and spent hours with a pen and paper trying to figure out the puzzle, as though he were studying for an upcoming exam. He drew clock after clock with my help, showing him the correct way. He'd duplicate accurately a few times then forget again. He continues to wear an analog watch but he is usually not able to tell whether he even has it on the right way up, let alone tell the time.
Today, Michael has trouble with the simplest things. Some days the plumbing of the toilet confuses and troubles him. Anxiety can overwhelm him as he struggles to understand what is happening to his waste, so convinced is he that he is voiding onto the floor. If I'm not being watchful, because it doesn't happen that often, he will start to take things apart in his attempt to comprehend, falling back on his innate curiosity of how things work and a desire to fix them. He is no longer allowed to touch any appliances, heavy equipment, power tools or any other electrical devices which he finds particularly confusing for some reason. In short, he's not allowed to touch anything more than the television remote control which at least he cannot damage too severely even if he can't figure it out. I spend a good deal of my day rescuing him from remote control purgatory. Most of the time he can no longer remember how to take his pills, which just started as an end of day deterioration but is now something I have to cue him for most of the time: put the pills in your hand, now put the pills in your mouth, now water. If I don't walk him through those steps, he has been known to drop the pills into the water or I'll see him just staring at them in confusion until I cue him. I don't like to jump in right away in case he can remember for himself. Some days he still can.
Michael's cognitive decline will continue and puzzling new developments will no doubt occur. How far down he will fall before he leaves us is a big unknown but one thing is certain: there will be no easy conclusion, no neat and tidy wrapping up of this puzzle.
My morning ritual is to hop out of bed early, feed the dogs, fetch the paper from the end of the long driveway (no doorstep delivery in the country), check in on Michael (this is usually long before he needs his 8:00 am dose of medication), check my email and facebook, put the kettle on for tea, then scan the paper. I read an op-ed article or two but most of the news stories are old by the time my hands touch newsprint, news I've already heard on the CBC morning radio show. What I really want are the puzzles - all the puzzles. I attack them like a junkie on speed. My focus is complete and if I'm lucky enough, I have time to do them all before I have to clean, dress and feed Michael for the morning. There is nothing quite so delicious as a steaming mug of tea, a quiet house and the paper spread out all over the dining room table.
I start with the Ken Ken puzzle, mysteriously hidden away all by itself in the sports section. It's a variation of Sudoku, but usually a quick study, with wild claims to "make you smarter". I ignore the basic puzzle on offer and go straight for the advanced. I can usually, on a good morning, polish that one off in about three minutes. Then it's on to the full puzzle page where I start with the word jumble, generally pretty easy unless it's the Sunday paper. Following that I hit the cyberquote which is a coded quotation of a few lines by a noted Canadian. I've been doing those since I was ten when I used to dream about being a code cracker in some covert spy mission. I had a wild imagination, what can I say? Then there's the Sudoku which starts out really easy on Monday, hardly worth the effort unless I'm really bored, but works up to the killer by Sunday, the day most people have a bit of time to waste on such indulgences. I could use the challenge every day, I'm afraid, since I have nothing but time. Finally I do the crossword, which during the week is ridiculously easy but fun nonetheless. It's the weekend papers that really dish out the posers with the New York Times crossword as well as a brand new challenger called Kakuro - Ken Ken on crack. I have managed to complete that one only twice because it takes me a long time and I usually get drawn away to do something more important, unfortunately. One day maybe I'll master it and finish it before breakfast like all the others with the exception of the New York Times crossword which, if I have the time and the brain, takes an entire day to complete, often with a bit of healthy cheating.
So that's how I waste my time. They are like a drug I have to submit to every day. I don't exactly go into withdrawal if I miss them but I do enjoy the challenge. It's where I put my nervous energy.
It is very satisfying to see the end of something so quickly. It's a limited task requiring a set amount of concentration with a pretty strong guarantee that I'll see completion. No loose ends. If I get stuck, I simply walk away for a while, do another puzzle or something else entirely. Usually when I get back to it, suddenly the puzzle unlocks itself.
Conventional wisdom says these puzzles are good for guarding against dementia and general brain rot. I'm not so sure of that but I'll tell myself that's why I'm doing them. That sounds better than the pure addiction it really is. Michael used to kill those puzzles at one time but that didn't make the least bit of difference to what has happened to his brain. I don't believe for a second that if he had done a few more of them he'd be better today, just as I don't believe it when well-meaning souls used to tell me that maybe he just didn't eat the right foods when he was growing up. That's just too neat and tidy and simplistic, not to mention incorrect. If there is one thing I've learned, it's that the human body, especially the brain, is so complex that some days I think we haven't got a tiny clue what causes what; we are groping around primitively in the dark most of the time, with no neat, easy solution to most of our physical puzzles. So let's not make people feel bad that they didn't eat right, do enough puzzles or weren't adequately loved by their mothers.
It is interesting, and of course indescribably sad, to watch the rapid deterioration of Michael's cognitive skills. For a short while I was trying hard to stimulate his brain by attempting card games, board games, jigsaw puzzles, but quickly realized he just cannot fathom them most days. I got overwhelmingly frustrated, having to explain every single step he needed to play something simple like Yahtzee, a game I used to play with very young children with more success. The grid of a crossword puzzle confuses him and he ends up filling the squares with random letters. If the clue is read out to him he can sometimes come up with an answer, just as he can knock me down with surprise with an answer to a tough Jeopardy question. But he cannot work out a crossword grid. Even the simplest Sudoku baffles him just as very easy arithmetic sums do now. And this is a man who studied engineering and advanced mathematics, could blow anyone out the water playing games like Trivial Pursuit, and maddeningly blurt out the solution to the mystery three minutes into a complex crime show.
Things have declined hugely since the neurologist performed this very simple test on Michael nearly three years ago when he finally recognized that Michael's cognition was declining: Among other tasks, he asked Michael to draw the face of an analog clock, apparently a basic test for cognitive decline. Michael wasn't even that bad yet, but I was shocked when he could not do it. As I sat there next to him I wanted to whisper, "Just look at your watch," but it didn't even occur to him to do so. I knew I couldn't help him out of this jam. After the appointment he came home and spent hours with a pen and paper trying to figure out the puzzle, as though he were studying for an upcoming exam. He drew clock after clock with my help, showing him the correct way. He'd duplicate accurately a few times then forget again. He continues to wear an analog watch but he is usually not able to tell whether he even has it on the right way up, let alone tell the time.
Today, Michael has trouble with the simplest things. Some days the plumbing of the toilet confuses and troubles him. Anxiety can overwhelm him as he struggles to understand what is happening to his waste, so convinced is he that he is voiding onto the floor. If I'm not being watchful, because it doesn't happen that often, he will start to take things apart in his attempt to comprehend, falling back on his innate curiosity of how things work and a desire to fix them. He is no longer allowed to touch any appliances, heavy equipment, power tools or any other electrical devices which he finds particularly confusing for some reason. In short, he's not allowed to touch anything more than the television remote control which at least he cannot damage too severely even if he can't figure it out. I spend a good deal of my day rescuing him from remote control purgatory. Most of the time he can no longer remember how to take his pills, which just started as an end of day deterioration but is now something I have to cue him for most of the time: put the pills in your hand, now put the pills in your mouth, now water. If I don't walk him through those steps, he has been known to drop the pills into the water or I'll see him just staring at them in confusion until I cue him. I don't like to jump in right away in case he can remember for himself. Some days he still can.
Michael's cognitive decline will continue and puzzling new developments will no doubt occur. How far down he will fall before he leaves us is a big unknown but one thing is certain: there will be no easy conclusion, no neat and tidy wrapping up of this puzzle.
Thursday, October 20, 2011
My Teachers
"..the education of women is of greater importance than the education of men, for they are the mothers of the race, and mothers rear the children. The first teachers of children are the mothers."
'Abdu'l-Baha.
'Abdu'l-Baha.
But fathers are a close second, at least mine was. My mother nurtured me gently but firmly the first six years of my life, years that were spent almost entirely alone in her company for we lived in very remote Alberta communities after our arrival in Canada in 1957. Schools in those rural farming and ranching communities were not wealthy enough to afford kindergarten, a term I never even knew until I was much older. Children stayed at home with their mothers. There were no play groups, no nursery schools, no daycare. Mothers toiled away at home in those somewhat deprived communities, their lives dictated by domestic labour. My mother, even as the school principal's wife and therefore sharing a rather higher social status in the community with the church minister's wives, was nonetheless subject to all the same harsh realities of life in a remote community.
But not all her time was spent immersed in domestic drudgery. My mother read a lot. And she read to me. I remember that we belonged to a mail order library of some sort, perhaps from the University of Alberta, and books were a constant in the various "teacherages" (housing, often quite rough and basic, provided by the school board) we inhabited over the nine years we spent in Alberta. My mother was a voracious reader and, happily, she loved to read to me. I think I was a late bloomer, like many of my own children, when it came to reading independently, but my mother made sure I was well-exposed to good books. Dad, on his many trips out of town to meetings or summer courses in "The City", as Edmonton was known, often brought back wonderful books. Among them were "Wind in the Willows", "Winnie-the Pooh", "Anne of Green Gables" and a fat volume of "Grimms Fairy Tales", all of which I still possess. At about age eight for Christmas I was given a copy of the Oxford English Dictionary, also still in my possession. I have very fond memories of bedtime as a child.
I loved being at home with my mom, who really just left me to my own devices as a child. I'd listen to Gilbert and Sullivan on the record player, taking special delight in the devilish laughter of the Mikado on a D'Oyly Carte recording of that operetta. I was probably a pretty odd little girl, never bored by a solitary life, good training for my life now, I realize. There was almost no television, a few toys and books but apart from that I would just hang out with my mom, helping her as much as a little preschooler could, or play all by myself, lost in an imaginary world. Mom didn't drive or have access to a car even if she could, so we spent most of our time alone at home together.
But eventually the apron strings had to be cut. I really looked forward to entering grade one though I must have been rather terrified to share a classroom with over thirty other children. I missed my mom hugely and remember being terribly embarrassed when I called my sweet young grade one teacher "Mom" one day.
I hated school even though, paradoxically, I excelled at it. I was skipped ahead in my early years, thanks, I'm sure, to my mother's early tutelage, though she never attempted to teach me anything formally at home. She just talked and read to me a great deal and played a lot of games, experience that strongly influenced my approach to teaching my own four children at home. It was a wonderfully free childhood, despite the isolation. In comparison, I was shy, bored, stressed out and somewhat lonely at school despite the large class sizes. But there was one thing that gave me comfort in those early years. Dad, as principal, was at school too, as were my siblings for the first couple of years.
The school I first attended in Grassland, Alberta, had about three hundred students, grades one to twelve. Though the town itself was very tiny, a mere widening in the highway that passed through it, the school and local businesses served the farming community surrounding it. I would guess, from the many school buses I remember lined up outside the school each day, that nearly all the children were transported into town from their farms. Every year during the sowing and reaping seasons when all hands were needed at home, the school emptied out leaving only the littlest who were too young to help and those of us whose families lived in town and simply benefited from the bounty of the annual crops.
Dad taught the upper grades which meant my two siblings were lucky enough to have him as their teacher for some courses. I had to wait a few years and another town for that privilege. Dad was well loved and respected by all, at least that was my impression. He knew every single kid by name and treated all equally with his wry good humour. He always said that a school was too big if the principal could not identify a retreating student from behind, which loosely translated into anything over about three hundred students. How many schools are there like that anymore, I wonder, in this world of bigger-must-be-better? Dad was also rather formidable if you ever found yourself in trouble, a situation I wisely avoided all my school-life. He was fair but tough and everyone knew it.
So, though I didn't enjoy Dad as my teacher until I was ten, he was a soothing presence for me. For the three years that he was my teacher in the small town of Kemano B.C, where class sizes were small, intimate and multi-graded, I can safely say he was the best teacher I ever had. Those were the only years that I didn't wake up with dread and anxious stomach cramps from my terror, a feeling that came back with a vengeance when I was sent to Vancouver to attend boarding school. The little school in Kemano stopped at grade eight and all the children had to be sent away to high school at a tender age or your family moved away to another community. I had learned to love school, and my dad's relaxed approach and emphasis on self-directed learning, a revolutionary approach back in the sixties, also influenced me greatly when I came to teach my own children. Dad was an inspired teacher, a Renaissance man; he could do anything and knew everything, it seemed to me, and what he didn't know, he freely admitted and set about finding out.
Not only did I learn the most about my own learning-style from my dad but he taught me something else, something he probably didn't even consider especially significant. Many of you probably remember the long-lost custom of gathering the school community together every morning for prayers and announcements. Today, school size and religious anxiety prohibit that practice in most schools, but in those days, in those communities, everyone was considered to be Christian, even if you weren't, though I think the population in those towns was pretty homogeneous. We'd shuffle into the auditorium with the youngest at the front, the oldest at the back, and listen to Dad give the daily announcements, then recite the Lord's Prayer, or maybe it was the other way around.
I was never sure of Dad's spiritual leanings. Like sex, it was a taboo topic in our home. We were never sent to Sunday School, unless we wanted to; we never attended church, unless we wanted to. We were never taught the Bible beyond what was part of the school curriculum which Dad wholeheartedly supported, probably believing it was an essential part of a well-rounded education, if nothing else. Mom was often called upon to play the organ or piano at some of the local churches but we were never forced to accompany her. One summer I tagged along on a week-long Christian summer camp probably conducted by young, zealous traveling missionaries. Mom and Dad were both happily supportive of the venture, though I quickly became bored and wished I had stayed home instead.
So it was really by accident that Dad became my first spiritual teacher. That recitation of the Lord's Prayer every morning became the only connection I really had to any faith back then, but even that was tenuous. I had no real interest but I dutifully memorized and recited it every day as did we all. I have vivid memories of standing at the front of the auditorium as a little six-year-old with my classmates and feeling the need to recite this prayer as loudly as I possibly could, probably shouting it. I felt God needed to hear my voice alone amidst the throng. Dad and my teacher must have known all too well who the offender was but all that was said by my teacher was a quiet reprimand to the entire class that such behaviour was unseemly. If she didn't already know it was me, my reddened face would have revealed my culpability. I quieted down after that. In later years I would stand next to my best friend, now well at the back of the small Kemano School common room where we gathered every morning, with my eyes tightly shut to see how long before I started to sway and risk falling over. I'm not sure I ever had a single spiritual or reverent thought all those mornings.
That prayer is still one I recite daily, having come back to it after abandoning all things spiritual for years. It now stands with several others I have memorized from my new faith, but it is the one that, as I recite it, I summon up my dad's presence along with all the other family members and friends who have left us. I imagine us all together again, standing close just as I did with my schoolmates, while I recite the Lord's Prayer on my solitary morning walk, my meditative time.
It surprised me a few nights ago when Michael asked that we start saying that prayer at bedtime along with the two others I always recite. We dedicate it, as I do when I'm on my own, to all those who have gone. It is the only prayer Michael has embedded in his memory, now incapable of memorizing new ones, but it is one thing we can still do together, in unison.
Thanks Dad.
But eventually the apron strings had to be cut. I really looked forward to entering grade one though I must have been rather terrified to share a classroom with over thirty other children. I missed my mom hugely and remember being terribly embarrassed when I called my sweet young grade one teacher "Mom" one day.
I hated school even though, paradoxically, I excelled at it. I was skipped ahead in my early years, thanks, I'm sure, to my mother's early tutelage, though she never attempted to teach me anything formally at home. She just talked and read to me a great deal and played a lot of games, experience that strongly influenced my approach to teaching my own four children at home. It was a wonderfully free childhood, despite the isolation. In comparison, I was shy, bored, stressed out and somewhat lonely at school despite the large class sizes. But there was one thing that gave me comfort in those early years. Dad, as principal, was at school too, as were my siblings for the first couple of years.
The school I first attended in Grassland, Alberta, had about three hundred students, grades one to twelve. Though the town itself was very tiny, a mere widening in the highway that passed through it, the school and local businesses served the farming community surrounding it. I would guess, from the many school buses I remember lined up outside the school each day, that nearly all the children were transported into town from their farms. Every year during the sowing and reaping seasons when all hands were needed at home, the school emptied out leaving only the littlest who were too young to help and those of us whose families lived in town and simply benefited from the bounty of the annual crops.
Dad taught the upper grades which meant my two siblings were lucky enough to have him as their teacher for some courses. I had to wait a few years and another town for that privilege. Dad was well loved and respected by all, at least that was my impression. He knew every single kid by name and treated all equally with his wry good humour. He always said that a school was too big if the principal could not identify a retreating student from behind, which loosely translated into anything over about three hundred students. How many schools are there like that anymore, I wonder, in this world of bigger-must-be-better? Dad was also rather formidable if you ever found yourself in trouble, a situation I wisely avoided all my school-life. He was fair but tough and everyone knew it.
So, though I didn't enjoy Dad as my teacher until I was ten, he was a soothing presence for me. For the three years that he was my teacher in the small town of Kemano B.C, where class sizes were small, intimate and multi-graded, I can safely say he was the best teacher I ever had. Those were the only years that I didn't wake up with dread and anxious stomach cramps from my terror, a feeling that came back with a vengeance when I was sent to Vancouver to attend boarding school. The little school in Kemano stopped at grade eight and all the children had to be sent away to high school at a tender age or your family moved away to another community. I had learned to love school, and my dad's relaxed approach and emphasis on self-directed learning, a revolutionary approach back in the sixties, also influenced me greatly when I came to teach my own children. Dad was an inspired teacher, a Renaissance man; he could do anything and knew everything, it seemed to me, and what he didn't know, he freely admitted and set about finding out.
Not only did I learn the most about my own learning-style from my dad but he taught me something else, something he probably didn't even consider especially significant. Many of you probably remember the long-lost custom of gathering the school community together every morning for prayers and announcements. Today, school size and religious anxiety prohibit that practice in most schools, but in those days, in those communities, everyone was considered to be Christian, even if you weren't, though I think the population in those towns was pretty homogeneous. We'd shuffle into the auditorium with the youngest at the front, the oldest at the back, and listen to Dad give the daily announcements, then recite the Lord's Prayer, or maybe it was the other way around.
I was never sure of Dad's spiritual leanings. Like sex, it was a taboo topic in our home. We were never sent to Sunday School, unless we wanted to; we never attended church, unless we wanted to. We were never taught the Bible beyond what was part of the school curriculum which Dad wholeheartedly supported, probably believing it was an essential part of a well-rounded education, if nothing else. Mom was often called upon to play the organ or piano at some of the local churches but we were never forced to accompany her. One summer I tagged along on a week-long Christian summer camp probably conducted by young, zealous traveling missionaries. Mom and Dad were both happily supportive of the venture, though I quickly became bored and wished I had stayed home instead.
So it was really by accident that Dad became my first spiritual teacher. That recitation of the Lord's Prayer every morning became the only connection I really had to any faith back then, but even that was tenuous. I had no real interest but I dutifully memorized and recited it every day as did we all. I have vivid memories of standing at the front of the auditorium as a little six-year-old with my classmates and feeling the need to recite this prayer as loudly as I possibly could, probably shouting it. I felt God needed to hear my voice alone amidst the throng. Dad and my teacher must have known all too well who the offender was but all that was said by my teacher was a quiet reprimand to the entire class that such behaviour was unseemly. If she didn't already know it was me, my reddened face would have revealed my culpability. I quieted down after that. In later years I would stand next to my best friend, now well at the back of the small Kemano School common room where we gathered every morning, with my eyes tightly shut to see how long before I started to sway and risk falling over. I'm not sure I ever had a single spiritual or reverent thought all those mornings.
That prayer is still one I recite daily, having come back to it after abandoning all things spiritual for years. It now stands with several others I have memorized from my new faith, but it is the one that, as I recite it, I summon up my dad's presence along with all the other family members and friends who have left us. I imagine us all together again, standing close just as I did with my schoolmates, while I recite the Lord's Prayer on my solitary morning walk, my meditative time.
It surprised me a few nights ago when Michael asked that we start saying that prayer at bedtime along with the two others I always recite. We dedicate it, as I do when I'm on my own, to all those who have gone. It is the only prayer Michael has embedded in his memory, now incapable of memorizing new ones, but it is one thing we can still do together, in unison.
Thanks Dad.
Saturday, October 8, 2011
The Educator
"The mind and spirit of man advance when he is tried by suffering...suffering and tribulation free man from the petty affairs of this worldly life until he arrives at a state of complete detachment."
Those are the words of Abdu'l-Baha, son of Baha'u'llah, founder of the Baha'i Faith , put to paper in Paris during his 1911 visit.
In no way would I compare our affluent, comfortable lives with those of the aforementioned family who suffered terribly through years of exile and imprisonment, but with each passing day of Michael's illness, I begin to understand those words. I have come to see Parkinson's Disease as my educator. I would not want to guess at or comment on Michael's spiritual experience with this ordeal, except to say that he seems to have achieved a detachment from the world and, most days, a serenity and acceptance of his condition that I have never seen in anyone else. It is I who must be taught.
I am learning to smooth the rough edges of my speech, to speak without judgment, without anger, sarcasm and frustration, to speak cheerfully when I'd rather scream.
I am learning to wait calmly and without hurry for my husband to search for and utter the words he needs to tell me something important or not so important, and to give each equal weight. I am learning to take the simplicity of those words and thoughts and dig below the surface to the intelligent mind buried within, to find meaning in the spaces.
I am learning to listen to wordless communication, to understand a facial expression, or simply a look in the eye when Parkinson's leaves his face a stricken mask, unable to communicate in even that most basic way.
I am learning to love my husband unconditionally beyond the physical reality of our relationship, a reality that means little communication, little intimate contact, no equality of minds or exchange of ideas, to love the man within the returned, needy child.
I have learned many skills through these challenges.
I was a shy, quiet girl when we first met; Michael was my strength, always socially adept and affable, qualities that attracted me. He talked and listened and loved all at once. I leaned on him. Over the years we have switched roles; my confidence has improved, his has waned. Now he is the one who looks to me for reassurance socially. He leans on me. His eyes dart to me immediately to fill in the words for him if he cannot find them himself. I have found my voice when he has lost his.
I have learned to take care of business, all business whether it is household accounting, small repairs, catastrophes, car shopping, home renovation decisions, yard work, parenting as though a single parent, pet care, problem solving, all domestic work. I am learning how things work like sump pumps and furnaces and tractors and generators. I can light fires to keep us warm and haul the wood we still have from when we heated that primitive way but might have to again with frequent power outages. I can haul water, cut grass, clear driveways. In short, all skills required in the running of a household and busy family I have had to learn or at least know to whom I can affordably delegate.
I have acquired an assertiveness I never had before. Years of advocating for this voiceless man have given me courage to speak out on his behalf, to complain about inaccessible buildings, to insist on medication changes. I am not sure I can yet do it for myself but it has become easier to do so for him and for others whose care has been bestowed upon me. I have learned that my natural courtesy accompanying a decisive and informed approach are a powerful combination and almost always meet with success.
I am learning to have an awareness, an empathy and an understanding for those who suffer with illness in our world, especially those with mental health afflictions. Michael's behaviour has sometimes bordered on what I imagine schizophrenia to be like: paranoia, delusions and hallucinations with accompanying fear and aggression. When I witness similar wild behaviour in the streets, I understand and wish the world would too. Many are self-medicating to escape the horrors in their brains. It is sobering to know that if Michael's condition weren't properly managed he too might be living and raving in the streets, if he could survive long enough.
I have learned a lot about what well-wishers need to know. They need to know to offer specific assistance such as, "I can give you an hour of respite on Sunday," not, "Just call if you need anything." A caregiver WILL call when she really needs something, but the day-to-day needs are so great that a community of people would soon be exhausted by constant requests for help; they must understand that a caregiver does not want to burden folks to the point of burnout and avoidance. It is better for those who can to step forward themselves to offer specifics and not burden the caregiver with their guilt if they cannot. This knowledge I will carry forward to all future involvement with the frail and their caregivers.
I have learned to shut out loud noise, to tolerate the constancy of the television, to enter my own inner world. I am learning to write and silence the editorial voice that haunted my brain and froze my pen all my life. I have cast aside that pen and taken up the computer instead, an instrument that has freed a flow of unfettered words onto the screen, to be cleaned up later.
I am learning to be patient with the course of this disease, to understand there is no formula, no straight trajectory. Michael could live ten minutes, ten days or ten years, but that is no different for any of us, is it? I have to accept that my impatience to "get on with my life" must be put aside, to realize I am engaged in meaningful work no matter how boring and frustrating it might be at times. I am also learning to be patient with myself, to pare down my expectations of perfection so that when I mess up I forgive myself more quickly.
I am learning to pace myself with that patience. There is time for everything and what there isn't time for turns out to be unnecessary or unimportant; "petty affairs". I have learned that to be an active member of my community I simply need to try to be the best person I know how to be, to treat all who cross my path with reverence and respect, in itself an act of revolution. I do not need recognition from anyone outside the little world of my home and my caregiving. One can have an impact on one's community without going more than a few steps from one's door.
I am a calmer, stronger, more efficient person than I've ever been before.
I am learning how to pray and put my trust in a higher order; to put aside my ego; to understand that what I want is inconsequential; that this is the job I have been given and this is what I must do. Nothing else matters. I am aware there may be divine mercy and justice at play here, allowing me to make amends for what in my mind looms as an egregious long-past offence. Atonement.
It is an impossibly long and arduous road to that "complete state of detachment," a destination I will never reach but must persevere nonetheless, as we all do. My ego frequently rears up with insistence and blocks the path. But I am learning, I think, and must be patient with that process too.
Those are the words of Abdu'l-Baha, son of Baha'u'llah, founder of the Baha'i Faith , put to paper in Paris during his 1911 visit.
In no way would I compare our affluent, comfortable lives with those of the aforementioned family who suffered terribly through years of exile and imprisonment, but with each passing day of Michael's illness, I begin to understand those words. I have come to see Parkinson's Disease as my educator. I would not want to guess at or comment on Michael's spiritual experience with this ordeal, except to say that he seems to have achieved a detachment from the world and, most days, a serenity and acceptance of his condition that I have never seen in anyone else. It is I who must be taught.
I am learning to smooth the rough edges of my speech, to speak without judgment, without anger, sarcasm and frustration, to speak cheerfully when I'd rather scream.
I am learning to wait calmly and without hurry for my husband to search for and utter the words he needs to tell me something important or not so important, and to give each equal weight. I am learning to take the simplicity of those words and thoughts and dig below the surface to the intelligent mind buried within, to find meaning in the spaces.
I am learning to listen to wordless communication, to understand a facial expression, or simply a look in the eye when Parkinson's leaves his face a stricken mask, unable to communicate in even that most basic way.
I am learning to love my husband unconditionally beyond the physical reality of our relationship, a reality that means little communication, little intimate contact, no equality of minds or exchange of ideas, to love the man within the returned, needy child.
I have learned many skills through these challenges.
I was a shy, quiet girl when we first met; Michael was my strength, always socially adept and affable, qualities that attracted me. He talked and listened and loved all at once. I leaned on him. Over the years we have switched roles; my confidence has improved, his has waned. Now he is the one who looks to me for reassurance socially. He leans on me. His eyes dart to me immediately to fill in the words for him if he cannot find them himself. I have found my voice when he has lost his.
I have learned to take care of business, all business whether it is household accounting, small repairs, catastrophes, car shopping, home renovation decisions, yard work, parenting as though a single parent, pet care, problem solving, all domestic work. I am learning how things work like sump pumps and furnaces and tractors and generators. I can light fires to keep us warm and haul the wood we still have from when we heated that primitive way but might have to again with frequent power outages. I can haul water, cut grass, clear driveways. In short, all skills required in the running of a household and busy family I have had to learn or at least know to whom I can affordably delegate.
I have acquired an assertiveness I never had before. Years of advocating for this voiceless man have given me courage to speak out on his behalf, to complain about inaccessible buildings, to insist on medication changes. I am not sure I can yet do it for myself but it has become easier to do so for him and for others whose care has been bestowed upon me. I have learned that my natural courtesy accompanying a decisive and informed approach are a powerful combination and almost always meet with success.
I am learning to have an awareness, an empathy and an understanding for those who suffer with illness in our world, especially those with mental health afflictions. Michael's behaviour has sometimes bordered on what I imagine schizophrenia to be like: paranoia, delusions and hallucinations with accompanying fear and aggression. When I witness similar wild behaviour in the streets, I understand and wish the world would too. Many are self-medicating to escape the horrors in their brains. It is sobering to know that if Michael's condition weren't properly managed he too might be living and raving in the streets, if he could survive long enough.
I have learned a lot about what well-wishers need to know. They need to know to offer specific assistance such as, "I can give you an hour of respite on Sunday," not, "Just call if you need anything." A caregiver WILL call when she really needs something, but the day-to-day needs are so great that a community of people would soon be exhausted by constant requests for help; they must understand that a caregiver does not want to burden folks to the point of burnout and avoidance. It is better for those who can to step forward themselves to offer specifics and not burden the caregiver with their guilt if they cannot. This knowledge I will carry forward to all future involvement with the frail and their caregivers.
I have learned to shut out loud noise, to tolerate the constancy of the television, to enter my own inner world. I am learning to write and silence the editorial voice that haunted my brain and froze my pen all my life. I have cast aside that pen and taken up the computer instead, an instrument that has freed a flow of unfettered words onto the screen, to be cleaned up later.
I am learning to be patient with the course of this disease, to understand there is no formula, no straight trajectory. Michael could live ten minutes, ten days or ten years, but that is no different for any of us, is it? I have to accept that my impatience to "get on with my life" must be put aside, to realize I am engaged in meaningful work no matter how boring and frustrating it might be at times. I am also learning to be patient with myself, to pare down my expectations of perfection so that when I mess up I forgive myself more quickly.
I am learning to pace myself with that patience. There is time for everything and what there isn't time for turns out to be unnecessary or unimportant; "petty affairs". I have learned that to be an active member of my community I simply need to try to be the best person I know how to be, to treat all who cross my path with reverence and respect, in itself an act of revolution. I do not need recognition from anyone outside the little world of my home and my caregiving. One can have an impact on one's community without going more than a few steps from one's door.
I am a calmer, stronger, more efficient person than I've ever been before.
I am learning how to pray and put my trust in a higher order; to put aside my ego; to understand that what I want is inconsequential; that this is the job I have been given and this is what I must do. Nothing else matters. I am aware there may be divine mercy and justice at play here, allowing me to make amends for what in my mind looms as an egregious long-past offence. Atonement.
It is an impossibly long and arduous road to that "complete state of detachment," a destination I will never reach but must persevere nonetheless, as we all do. My ego frequently rears up with insistence and blocks the path. But I am learning, I think, and must be patient with that process too.
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