Dear Emmett,
I can't stop staring into your perfect little face. The photos your thoughtful daddy has sent show you mostly with your eyes clamped shut, resting after your turbulent entry into this world. Be prepared for your exhausted and battered mommy to bring that up occasionally throughout your life to remind you both what it takes to bring a child into the light, long after memory of that pain and suffering have dulled.
When Daddy manages to capture you with your eyes open, I search for you behind the dark blue irises that many babies share. Your face even resembles what I remember of all of my little ones, your essential you-ness still not fully stamped upon your features. I have prayed for you to be healthy and happy, of course, but mostly I have prayed for you to be strong in the face of the harshness of this world and to be of service to humanity, to find that special niche where Emmett's gifts can shine. You are already blessed with strong, competent and loving parents as well as a host of extended family members who are besotted even though most of us have only met you through the images on our computer screens.
The day you were born I was surprised how little I felt beyond the extreme relief that Mommy had weathered the ordeal. I had been nervous just before and during her labour, an anxiety I never felt facing my own four labours and deliveries. But she is my baby and those protective maternal instincts never go away it seems. I was joyous, of course, that you had arrived but it wasn't until the next day, when your little face appeared before me through the wonders of technology, that I fell hopelessly and absolutely in love, a deep ache overwhelming me and a sadness that I cannot be right there to hold you in my arms. A friend, a fellow-grandmother, told me one day that being a grandparent is the best. I think I am getting a glimmer of what that feeling is and an understanding of my own parents' deep love of my children, a love that confirmed their love for us, their own offspring. It is a connection that is forged between the generations when a grandchild arrives, an unspoken bond of love and trust, even appreciation as the new parent suddenly sees the world through her own parents' eyes.
I will meet you in the flesh one day, God willing. In the meantime I have a very important job taking care of your grandfather whose name you now bear within your own. He needs as much care as you do, my love; he has entered his second childhood and needs constant love and attention. You have just arrived in this world; he is preparing to depart. Leaving him to the care of others is as difficult for me as was leaving your mommy and her siblings when they were little.
I hope you can know him one day but I fear he may be gone before you can love him yourself. I will be looking for him in you, looking for his kindness, his loyalty, his humour, his passion. The old Michael would have been misty-eyed on hearing of your arrival and would have scooped you up in his strong arms and held you to his chest, pacing and singing Daddy-lullabies from his treasure trove of music: Stan Rogers, Bruce Springsteen, Peter, Paul and Mary, Pete Seger. Many of the songs your parents might have had to ban, their subject matter questionable.
He would have loved you fiercely and mightily, little Emmett. I like to think his soul is connected to yours and will watch over you for eternity.
*Janis Rozentals, "Mother and Child" 1904
Day to day with Parkinson's Disease
One woman's journey caring for her husband diagnosed in 1994 with early onset Parkinson's Disease.
Monday, May 20, 2013
Monday, May 13, 2013
Sweet Relief
Her irritability was so high, it had to be channeled. Bedtime, when she's tired or bored, can seem like an eternity. Snack, medication, bathroom, teeth: all simple processes under normal circumstances but sometimes, with an advanced case of caregiver irritation, can take forever.
Earlier he had shown some impatience with her usual style of administering medications. Now tired of constantly having to cue him (Put the pills in your hand; put them in your mouth - no, not in the water; now have a drink) she simply tips the egg cup of pills into his mouth then shoves in the straws of his cup, whereupon he automatically takes a sip. In a rare display of independence he had petulantly insisted on taking the seven p.m. dose of medication himself, spilling pills and water in the process. Right, she thought sharply at bedtime, tonight I will let you do all of it yourself.
She plunked his bedtime snack, two yogurt cups, onto the table in front of him, careful to push the day's last dose of meds out of his reach to avoid confusion. She left him to peel off the foil wrappers and feed himself, then, standing close by in case of calamity, she let him try to figure out the medications on his own. Removing the wrappers was complicated, medications even more so. He sat and stared at them blankly, then looked up at her imploringly for a cue. But she was feeling uncharitable and turned away, leaving him to sort it out. After a few moments, he lost concentration and started scribbling busily on the newspaper. When several minutes had elapsed and the pills were obviously not going to move without intervention, she finally took his hand and coached him. Annoyance had to be swallowed.
Then came the visit to the bathroom for nightly ablutions. After helping him onto the toilet, a very necessary step if she wants to avoid a mess, she left him alone. By now her impatience to have the day end was reaching a fever pitch. On poking her head into the bathroom she saw that he was inspecting his teeth. She gave a gentle prod (in her own head a scream) of encouragement to speed things up but he seemed determined to slow things down. She knows he is probably not capable of deliberate behaviour anymore, but tonight felt like an exception. She knew, however, that her impatience was simply out of control.
She started to pace, nervous energy now nearly boiling over. She found herself humming a tune, then realized with a laugh that it was a children's song she used to sing with the kids when she wanted to joke with them about feeling crazy: "I am slowly going crazy. One, two, three, four, five, six, switch. Crazy going slowly am I. Six, five, four, three, two, one, switch." Repeat, repeat, repeat, repeat.
Faster and faster she paced around the large dining room carpet, then expanding the route around the stairs, speeding up the song until she was nearly running and shouting. If anyone were to see her now...
Finally he emerged from the bathroom. Whether he had actually accomplished anything she didn't care. Hasty prayers and goodnights once he was settled into bed, then she nearly flew upstairs to her room.
Aaaaaah, sweet relief.
*John Tenniel's illustration from Lewis Carroll's "Alice's Adventures in Wonderland", 1865.
Earlier he had shown some impatience with her usual style of administering medications. Now tired of constantly having to cue him (Put the pills in your hand; put them in your mouth - no, not in the water; now have a drink) she simply tips the egg cup of pills into his mouth then shoves in the straws of his cup, whereupon he automatically takes a sip. In a rare display of independence he had petulantly insisted on taking the seven p.m. dose of medication himself, spilling pills and water in the process. Right, she thought sharply at bedtime, tonight I will let you do all of it yourself.
She plunked his bedtime snack, two yogurt cups, onto the table in front of him, careful to push the day's last dose of meds out of his reach to avoid confusion. She left him to peel off the foil wrappers and feed himself, then, standing close by in case of calamity, she let him try to figure out the medications on his own. Removing the wrappers was complicated, medications even more so. He sat and stared at them blankly, then looked up at her imploringly for a cue. But she was feeling uncharitable and turned away, leaving him to sort it out. After a few moments, he lost concentration and started scribbling busily on the newspaper. When several minutes had elapsed and the pills were obviously not going to move without intervention, she finally took his hand and coached him. Annoyance had to be swallowed.
Then came the visit to the bathroom for nightly ablutions. After helping him onto the toilet, a very necessary step if she wants to avoid a mess, she left him alone. By now her impatience to have the day end was reaching a fever pitch. On poking her head into the bathroom she saw that he was inspecting his teeth. She gave a gentle prod (in her own head a scream) of encouragement to speed things up but he seemed determined to slow things down. She knows he is probably not capable of deliberate behaviour anymore, but tonight felt like an exception. She knew, however, that her impatience was simply out of control.
She started to pace, nervous energy now nearly boiling over. She found herself humming a tune, then realized with a laugh that it was a children's song she used to sing with the kids when she wanted to joke with them about feeling crazy: "I am slowly going crazy. One, two, three, four, five, six, switch. Crazy going slowly am I. Six, five, four, three, two, one, switch." Repeat, repeat, repeat, repeat.
Faster and faster she paced around the large dining room carpet, then expanding the route around the stairs, speeding up the song until she was nearly running and shouting. If anyone were to see her now...
Finally he emerged from the bathroom. Whether he had actually accomplished anything she didn't care. Hasty prayers and goodnights once he was settled into bed, then she nearly flew upstairs to her room.
Aaaaaah, sweet relief.
*John Tenniel's illustration from Lewis Carroll's "Alice's Adventures in Wonderland", 1865.
Tuesday, April 30, 2013
Resentment
Overwhelming sleepiness prompted me to indulge in a rare after-dinner cup of tea to get me through the evening.
Meal-time had been wild and stressful - normal. Michael took too large a bite of pizza and had a rather spectacular choking fit, gagging, gasping, vomiting, coughing, contorting, convulsing, face turning impressive shades of blue, snot, tears and saliva pouring down his face. Once the drama had passed, he attacked his food. I admonished him repeatedly and impatiently to take small bites, chew thoroughly, sit up properly, concentrate on the task at hand - all wasted words. Halfway through, he suddenly needed to visit the bathroom, a normal break in every meal. I followed him in a minute or two too late: Accident all over his clothes and the floor. Then, on returning to the table, he finished his meal and stood up again, this time abruptly, knocking a half glass of apple juice over the table, the newspaper, the floor, but not quite onto the computer parked just beyond the flood. I flung the cloth napkins into the spreading pool to stem the flow then shuffled him off to the living room, ordering him to sit still while I mopped up the mess. He jabbed uselessly at the remote control. I felt frustration boiling beneath the surface, my voice edged with annoyance.
The tea erased my fatigue but left me wide-awake, now near midnight. I was consumed by an unfocused restlessness that made reading impossible but cupboard cleaning a must. I found a notebook stuffed into the bedside table I had emptied onto the floor. I sat down to flip through it. There were lists of Christmas presents purchased over the years. There were pages devoted to crunching money numbers in case of this or that eventuality. There were a few dreams recorded, now long forgotten. There were rough drafts of sad letters to my sister (did I ever send them?) and there was this, strangely and messily scribbled backwards in my notebook, not long after my sister died on April 19, 2011:
Resentment has no place in the human heart, least of all in the heart of the caregiver. Holding on to past grievances can fester like a poisoned sore, incapable of healing. One must empty that store of accumulated, perceived injustices to remain sane and stable through this job.
I rarely allow myself to pay a visit to that collection of complaints. I thought I had dealt with it all, had sealed the lid securely and pemanently. But, alas, now and again my ugly resentment rears its head and I must wrestle it back into the box.
It catches me by surprise, when I least expect it. Tonight, for instance, was an ordinary night, filled with the usual dumb television, lots of knitting and, happily, lots of phone calls from kids and friends. So I was pretty content by Michael's bedtime. It wasn't until I started the nightly calming prayers that I was suddenly grabbed. I tried to focus on the words but I could only think of our aborted train trip (blogpost "Journeys", March 1, 2011) and how it was to have been the last opportunity to see my sister and her husband before they died. We had put life on hold and had spent two years waiting for a surgical procedure (blogpost "The Long Dead-End Road to Surgery", June 4, 2011) that was then abruptly cancelled just months before I finally booked the trip. But it was too late. Michael's dementia and psychosis were too advanced to endure such a journey. That too had to be cancelled.
I had been angry, frustrated, sad, all at once, but I don't think I cried much at the time. There had been far too much to deal with at home trying to stabilize Michael's mental health that was careening out of control and just survive the ordeal.
But tonight it erupted. Hot tears stung my eyes as I imagined completing that journey and seeing my sister after all, holding her frail body, probably both of us crying. I'm crying as I write this.
Michael was oblivious to what I have had to give up for him, indeed what had had to be given up for years before. In a flash, just for a moment, I hated him, but just as quickly the anger abated and I imagined Ann herself. She calmed me; I told myself he wasn't responsible.
* F.S. Church,"Opened up a Pandora's Box", 19th century
Meal-time had been wild and stressful - normal. Michael took too large a bite of pizza and had a rather spectacular choking fit, gagging, gasping, vomiting, coughing, contorting, convulsing, face turning impressive shades of blue, snot, tears and saliva pouring down his face. Once the drama had passed, he attacked his food. I admonished him repeatedly and impatiently to take small bites, chew thoroughly, sit up properly, concentrate on the task at hand - all wasted words. Halfway through, he suddenly needed to visit the bathroom, a normal break in every meal. I followed him in a minute or two too late: Accident all over his clothes and the floor. Then, on returning to the table, he finished his meal and stood up again, this time abruptly, knocking a half glass of apple juice over the table, the newspaper, the floor, but not quite onto the computer parked just beyond the flood. I flung the cloth napkins into the spreading pool to stem the flow then shuffled him off to the living room, ordering him to sit still while I mopped up the mess. He jabbed uselessly at the remote control. I felt frustration boiling beneath the surface, my voice edged with annoyance.
The tea erased my fatigue but left me wide-awake, now near midnight. I was consumed by an unfocused restlessness that made reading impossible but cupboard cleaning a must. I found a notebook stuffed into the bedside table I had emptied onto the floor. I sat down to flip through it. There were lists of Christmas presents purchased over the years. There were pages devoted to crunching money numbers in case of this or that eventuality. There were a few dreams recorded, now long forgotten. There were rough drafts of sad letters to my sister (did I ever send them?) and there was this, strangely and messily scribbled backwards in my notebook, not long after my sister died on April 19, 2011:
Resentment has no place in the human heart, least of all in the heart of the caregiver. Holding on to past grievances can fester like a poisoned sore, incapable of healing. One must empty that store of accumulated, perceived injustices to remain sane and stable through this job.
I rarely allow myself to pay a visit to that collection of complaints. I thought I had dealt with it all, had sealed the lid securely and pemanently. But, alas, now and again my ugly resentment rears its head and I must wrestle it back into the box.
It catches me by surprise, when I least expect it. Tonight, for instance, was an ordinary night, filled with the usual dumb television, lots of knitting and, happily, lots of phone calls from kids and friends. So I was pretty content by Michael's bedtime. It wasn't until I started the nightly calming prayers that I was suddenly grabbed. I tried to focus on the words but I could only think of our aborted train trip (blogpost "Journeys", March 1, 2011) and how it was to have been the last opportunity to see my sister and her husband before they died. We had put life on hold and had spent two years waiting for a surgical procedure (blogpost "The Long Dead-End Road to Surgery", June 4, 2011) that was then abruptly cancelled just months before I finally booked the trip. But it was too late. Michael's dementia and psychosis were too advanced to endure such a journey. That too had to be cancelled.
I had been angry, frustrated, sad, all at once, but I don't think I cried much at the time. There had been far too much to deal with at home trying to stabilize Michael's mental health that was careening out of control and just survive the ordeal.
But tonight it erupted. Hot tears stung my eyes as I imagined completing that journey and seeing my sister after all, holding her frail body, probably both of us crying. I'm crying as I write this.
Michael was oblivious to what I have had to give up for him, indeed what had had to be given up for years before. In a flash, just for a moment, I hated him, but just as quickly the anger abated and I imagined Ann herself. She calmed me; I told myself he wasn't responsible.
* F.S. Church,"Opened up a Pandora's Box", 19th century
Wednesday, April 17, 2013
A Sticky Interlude
It hasn't exactly been a harsh winter. It's just that we've been spoiled the past couple of years which have been exceptionally mild and snowless. Last year I was gardening at the end of April, the ground was so dry and warm. A normal winter can see snow well up to the end of April in this northern climate, with gardening happening in May if we're lucky. This is to be such a year, apparently, with a nasty snow and ice storm as recently as last Friday. Happily the thermometer shot up immediately afterwards ridding us of that minor accumulation along with most of the residual piles. Today the warm sunshine was a joy and if I squinted I could blot out the few remaining dirty white heaps in the yard. The birds were rejoicing and I felt restless.
Wednesdays are caregiver-less days. If Michael follows his usual pattern of a long post-prandial morning nap, I can safely expend some of my energy and pass some of the long day with a workout. Afternoons are usually devoted to movies or napping but it seemed too fine a day to waste it indoors. Since a walk beyond the end of the driveway is usually out of the question for Michael now, and the muddy road conditions were not allowing a wheelchair stroll, a ride in the car was the best I could think of beyond sitting on the porch shivering in the spring air.
After a hasty lunch, I hurried Michael into the car. A good deal of focus is required for this job because he can easily become distracted and diverted by a wallet, a shoe lace, a pattern on the carpet. I didn't quite shove him out the door.
I didn't have big plans. Just up the highway to the next town, stop for a coffee then hurtle back down the road to home. An hour in total is about the limit to Michael's stamina and my patience. A curious idiosyncrasy of his condition is that wherever he is seated, after a few minutes he always starts to list heavily to his left. Many are the times that he's nearly tipped over his wheelchair as he slides sideways, especially if the intricate design of the carpet becomes a fixation. On the couch he often ends up with his head on the seat, glasses askew. But in the car this poses a special problem. This tilt lands him nearly in my lap or at the very least blocking the stick shift in my tiny car. I have developed an odd driving style where I give him a healthy jab and a push with my right elbow to clear him out of the way, a gesture that is only effective for a few minutes and has to be repeated dozens of times during a short drive. It gets old very quickly.
But my usual reluctance to take him out was trumped by my restlessness. Off we sped with Simon and Garfunkel, Eagles of Death Metal, Adele, Foo Fighters and Eric Clapton - to name but a few - as company. We both sang even though Michael has lost his lovely voice and no longer knows the words. Garbled and monotone best describe his new style.
Our destination was the recently opened Tim Horton's doughnut shop in the neighbouring town. No way could I consider going inside so we pulled into the drive-through for take-out then turned into the parking lot. When I had asked him if he wanted coffee, Michael was unable to make a decision but he was precisely articulate in his request for doughnuts: Two apple fritters, please. I opened the windows and enjoyed the view of the tall pine trees bordering this country coffee shop. I looked over at Michael to see him trying to shove both fritters into his mouth at once since they were stickily glued together. I reached over to separate them for him. They were gone in minutes. Though it could have been the caffeine now surging through my bloodstream, I felt an immense flow of affection for my obviously happy husband.
I cleaned him up then pulled out of the parking lot. We were quite close to the nursing home I had visited just last week, and for a split second I thought about turning right to go farther up the highway to show Michael where I might have to send him one day, just to plant the seed. But he was humming tunelessly at this point, starting his inevitable slump into my lap, sticky but content. Why ruin a great afternoon with the likely panic that detour would cause? Instead I turned left, turned up the volume and drove home.
Wednesdays are caregiver-less days. If Michael follows his usual pattern of a long post-prandial morning nap, I can safely expend some of my energy and pass some of the long day with a workout. Afternoons are usually devoted to movies or napping but it seemed too fine a day to waste it indoors. Since a walk beyond the end of the driveway is usually out of the question for Michael now, and the muddy road conditions were not allowing a wheelchair stroll, a ride in the car was the best I could think of beyond sitting on the porch shivering in the spring air.
After a hasty lunch, I hurried Michael into the car. A good deal of focus is required for this job because he can easily become distracted and diverted by a wallet, a shoe lace, a pattern on the carpet. I didn't quite shove him out the door.
I didn't have big plans. Just up the highway to the next town, stop for a coffee then hurtle back down the road to home. An hour in total is about the limit to Michael's stamina and my patience. A curious idiosyncrasy of his condition is that wherever he is seated, after a few minutes he always starts to list heavily to his left. Many are the times that he's nearly tipped over his wheelchair as he slides sideways, especially if the intricate design of the carpet becomes a fixation. On the couch he often ends up with his head on the seat, glasses askew. But in the car this poses a special problem. This tilt lands him nearly in my lap or at the very least blocking the stick shift in my tiny car. I have developed an odd driving style where I give him a healthy jab and a push with my right elbow to clear him out of the way, a gesture that is only effective for a few minutes and has to be repeated dozens of times during a short drive. It gets old very quickly.
But my usual reluctance to take him out was trumped by my restlessness. Off we sped with Simon and Garfunkel, Eagles of Death Metal, Adele, Foo Fighters and Eric Clapton - to name but a few - as company. We both sang even though Michael has lost his lovely voice and no longer knows the words. Garbled and monotone best describe his new style.
Our destination was the recently opened Tim Horton's doughnut shop in the neighbouring town. No way could I consider going inside so we pulled into the drive-through for take-out then turned into the parking lot. When I had asked him if he wanted coffee, Michael was unable to make a decision but he was precisely articulate in his request for doughnuts: Two apple fritters, please. I opened the windows and enjoyed the view of the tall pine trees bordering this country coffee shop. I looked over at Michael to see him trying to shove both fritters into his mouth at once since they were stickily glued together. I reached over to separate them for him. They were gone in minutes. Though it could have been the caffeine now surging through my bloodstream, I felt an immense flow of affection for my obviously happy husband.
I cleaned him up then pulled out of the parking lot. We were quite close to the nursing home I had visited just last week, and for a split second I thought about turning right to go farther up the highway to show Michael where I might have to send him one day, just to plant the seed. But he was humming tunelessly at this point, starting his inevitable slump into my lap, sticky but content. Why ruin a great afternoon with the likely panic that detour would cause? Instead I turned left, turned up the volume and drove home.
Tuesday, April 9, 2013
The Other Side of the Mirror
I pulled into the drive-through for a much needed coffee. I was suddenly feeling very tired on this sunny, spring day. Tired and sad. I got my caffeine boost then pulled back onto the highway, jacked up the music and shifted up to sixth gear once at full speed, several notches above the allowable speed. I didn't care if I encountered a speed trap today.
I can't do it; my high speed conclusion.
I had arranged to meet my social worker at the local public health office about a half hour drive north of our home, a scenic highway drive through the countryside. This office is attached to the nursing home serving our area and I was to have a tour of the place.
The social worker had been almost excited when I contacted her about four weeks ago to discuss my options for respite care. Nearly breathlessly she told me about this local nursing home that offers up to two weeks of respite at a time for the laughable cost of $25 per day. That's socialized medicine for you in this wonderful Canadian province of Quebec. All I needed to do was give her a call when I was ready to arrange a visit. Why I didn't arrange it then and there I don't know. I had to think about it, I suppose, wrap my head around the idea.
Two weeks ago I did just that. Today was the day. I walked in; my social worker was waiting for me and greeted me warmly. She ushered me into her office to have a brief chat before going upstairs to see the facility. We talked about my concerns; she filled me in on medication requirements. We discussed strategies for managing the inevitable panic and psychosis and maybe even aggression that would overwhelm my fragile husband if I were to hand over his care for a short- or long-term visit. I put forward my extreme reluctance to do this.
The day before, having been alerted by the social worker, Michael's doctor called to update his medical file in preparation for an immediate visit if I need it. With that completed very little stands in my way of a wild vacation if I so choose. Everyone is working hard to make this happen for me and for that I am very grateful. The fact that I am digging in my heels is not because I am getting no support. I couldn't ask for more.
Our initial chat over, we climbed the stairs to the second floor where a 32 bed facility exists for the region's aged and infirm. I have visited many such places in the years of caring for my parents and Michael's so I have no illusions and very low expectations. I was prepared. A big red button had to be pressed to open the locked security door at the top of the stairs before we could enter. I walked through to another world, the other side of the Looking Glass.
The first thing that hit me was the familiar smell of every such institution I've entered: feces and urine. The second thing was the inescapable fact that this was nothing more than a hospital with its institutional concrete walls, dull paint, fluorescent lighting, hand rails, nursing station, uniformed staff and, hiding just beneath the fecal smell, the industrial cleansers that might mask but never eliminate that ubiquitous odour. The common area in front of the central nursing station was filled with wheel chairs, white heads nodding sleepily, slippered feet, haphazard clothing and bathrobes, drool. Life was at a standstill. The only sound in this full-to-capacity institution was the quiet, low-volume drone of multiple televisions with a glassy- or droopy-eyed viewer before each set. Only one resident was ambulatory but his face sported a crazy, leering mouth, a blank stare. The newly added gazebo off the cafeteria that offered a calm pastoral view and fresh air was desolate and empty on this sunny, warm spring afternoon.
L. showed me the individual, private rooms whose main attractions are large sunny windows, one side of the building overlooking an elementary school yard and the parking lot, the other a not less attractive back view but with no action. Everyone wants the school view apparently but from what I witnessed, nobody was looking out any windows to the world outside. These rooms were well appointed with built-in drawers and cupboards and were identical in every way except for the brightly coloured blankets and bedspreads on each hospital bed. Some rooms had a picture or two tacked to the walls and every room had the resident's full name typed on a large poster and taped to the door, a memory cue for each resident I assumed.
I was fighting tears while struggling to remain cheerful and positive as I asked all my questions. L. answered them all well or consulted with the nearly unilingually French-speaking head nurse if she didn't have the answer. My biggest concern was ratio of caregiver to patient: approximately 1:5 on a good day. My social worker admitted it wasn't a question often asked which surprised me since most of these people looked like my husband whose needs are great and often keep me very busy. And that's when he's calm and relatively happy. Representing this publicly run facility, she at least didn't try a hard-sell job on me, unlike the for-profit retirement facilities whose slick websites and zealous sales-reps paint a very rosy picture of extreme old age that can lull you into a false sense of calm and well-being. I've detected the body-function smells in most of those places too but they are much prettier and offer fantastic outings even though their caregiver/patient ratios are often worse than their government-run sisters. Bottom line is obviously their main concern.
We shook hands as I departed. I told L. I might be able to manage a night only, at least at first. She agreed that was a good approach and she assured me I could call to talk if I needed to. No pressure, thank God.
But as I pulled onto the highway, my fatigue hit like a boulder. Coffee was definitely in order. When I finally entered my warm home, Michael was seated at the table with tea, cookies and the newspaper spread messily before him. He was gazing out the window calmly and dreamily while my wonderful caregiver buzzed cheerfully around my kitchen, laughter and warmth in her voice. Relief and happiness wrapped around me.
No, I'm not ready.
*John Tenniel's illustration from Lewis Carroll's Through the Looking-Glass, and What Alice Found There (1871).
I can't do it; my high speed conclusion.
I had arranged to meet my social worker at the local public health office about a half hour drive north of our home, a scenic highway drive through the countryside. This office is attached to the nursing home serving our area and I was to have a tour of the place.
The social worker had been almost excited when I contacted her about four weeks ago to discuss my options for respite care. Nearly breathlessly she told me about this local nursing home that offers up to two weeks of respite at a time for the laughable cost of $25 per day. That's socialized medicine for you in this wonderful Canadian province of Quebec. All I needed to do was give her a call when I was ready to arrange a visit. Why I didn't arrange it then and there I don't know. I had to think about it, I suppose, wrap my head around the idea.
Two weeks ago I did just that. Today was the day. I walked in; my social worker was waiting for me and greeted me warmly. She ushered me into her office to have a brief chat before going upstairs to see the facility. We talked about my concerns; she filled me in on medication requirements. We discussed strategies for managing the inevitable panic and psychosis and maybe even aggression that would overwhelm my fragile husband if I were to hand over his care for a short- or long-term visit. I put forward my extreme reluctance to do this.
The day before, having been alerted by the social worker, Michael's doctor called to update his medical file in preparation for an immediate visit if I need it. With that completed very little stands in my way of a wild vacation if I so choose. Everyone is working hard to make this happen for me and for that I am very grateful. The fact that I am digging in my heels is not because I am getting no support. I couldn't ask for more.
Our initial chat over, we climbed the stairs to the second floor where a 32 bed facility exists for the region's aged and infirm. I have visited many such places in the years of caring for my parents and Michael's so I have no illusions and very low expectations. I was prepared. A big red button had to be pressed to open the locked security door at the top of the stairs before we could enter. I walked through to another world, the other side of the Looking Glass.
The first thing that hit me was the familiar smell of every such institution I've entered: feces and urine. The second thing was the inescapable fact that this was nothing more than a hospital with its institutional concrete walls, dull paint, fluorescent lighting, hand rails, nursing station, uniformed staff and, hiding just beneath the fecal smell, the industrial cleansers that might mask but never eliminate that ubiquitous odour. The common area in front of the central nursing station was filled with wheel chairs, white heads nodding sleepily, slippered feet, haphazard clothing and bathrobes, drool. Life was at a standstill. The only sound in this full-to-capacity institution was the quiet, low-volume drone of multiple televisions with a glassy- or droopy-eyed viewer before each set. Only one resident was ambulatory but his face sported a crazy, leering mouth, a blank stare. The newly added gazebo off the cafeteria that offered a calm pastoral view and fresh air was desolate and empty on this sunny, warm spring afternoon.
L. showed me the individual, private rooms whose main attractions are large sunny windows, one side of the building overlooking an elementary school yard and the parking lot, the other a not less attractive back view but with no action. Everyone wants the school view apparently but from what I witnessed, nobody was looking out any windows to the world outside. These rooms were well appointed with built-in drawers and cupboards and were identical in every way except for the brightly coloured blankets and bedspreads on each hospital bed. Some rooms had a picture or two tacked to the walls and every room had the resident's full name typed on a large poster and taped to the door, a memory cue for each resident I assumed.
I was fighting tears while struggling to remain cheerful and positive as I asked all my questions. L. answered them all well or consulted with the nearly unilingually French-speaking head nurse if she didn't have the answer. My biggest concern was ratio of caregiver to patient: approximately 1:5 on a good day. My social worker admitted it wasn't a question often asked which surprised me since most of these people looked like my husband whose needs are great and often keep me very busy. And that's when he's calm and relatively happy. Representing this publicly run facility, she at least didn't try a hard-sell job on me, unlike the for-profit retirement facilities whose slick websites and zealous sales-reps paint a very rosy picture of extreme old age that can lull you into a false sense of calm and well-being. I've detected the body-function smells in most of those places too but they are much prettier and offer fantastic outings even though their caregiver/patient ratios are often worse than their government-run sisters. Bottom line is obviously their main concern.
We shook hands as I departed. I told L. I might be able to manage a night only, at least at first. She agreed that was a good approach and she assured me I could call to talk if I needed to. No pressure, thank God.
But as I pulled onto the highway, my fatigue hit like a boulder. Coffee was definitely in order. When I finally entered my warm home, Michael was seated at the table with tea, cookies and the newspaper spread messily before him. He was gazing out the window calmly and dreamily while my wonderful caregiver buzzed cheerfully around my kitchen, laughter and warmth in her voice. Relief and happiness wrapped around me.
No, I'm not ready.
*John Tenniel's illustration from Lewis Carroll's Through the Looking-Glass, and What Alice Found There (1871).
Tuesday, March 26, 2013
Piercing the Armour
The cell-like room was hot, the white walls close, sparsely decorated, and the lighting somewhat harsh until dimmed for relaxation. The music was the standard, mindless New Age tinklings of drifting flutes, bells and harps, composed to empty your brain. I lay on the table semi-clad for my first acupuncture appointment. Lately the pain in my swollen, stiff middle finger has been extreme, severely limiting my activities some days. I can no longer knit, nor do many fine-motor tasks with my dominant right hand so compromised. I am having little trouble, however, with large-motor tasks which include all the not-so-fun jobs like shoveling snow and housekeeping. That is as long as I don't jar that finger, causing blades of pain to stab at my hand and an expletive or two to escape my mouth.
I had run out of strategies. The anti-inflammatory medication I had been pumping for months, increased significantly during my recent gallbladder challenges, seemed to have eaten a hole in my stomach and was responsible for much of the very dramatic pain I suffered in conjunction with the gallbladder discomfort. I am no longer willing to go down that road so I have had to limit my usage to when the pain is so unpleasant that I can barely use the hand, but I must be sure to swallow only a single pill with a bite to eat. Besides, the relief offered is minimal now. I have an appointment with my GP in a few days to discuss conventional treatment for what I am assuming is no longer just an arthritic digit. I am speculating that this could be related to the broken right wrist I suffered four years ago since this problem arose shortly thereafter and has gradually worsened, whereas the minor arthritis in the rest of my fingers is stable and barely painful at all. It also coincided with the unraveling of our lives in 2009 when Michael's condition changed so drastically and two family deaths occurred, but I am not certain how much impact stress has on such a condition. I am now even prepared to undergo cortisone shots if that is all that will allay this pain. On a bad day I imagine amputation might not be such a bad idea, though I suspect I might have a hard time convincing any doctor to comply with that wish.
In a last ditch effort before anything drastic I decided I had nothing to lose with acupuncture. I had tried many other alternative treatments, including homeopathy and the standard glucosamine/chondroitin/MSM concoction, but all with limited to no success. One friend suggested wryly that perhaps I just hadn't used that expressive finger enough in my life and it was time to change. I can report that no matter how much satisfaction that might afford, it hasn't alleviated the pain.
The therapist is an earnest middle-aged woman who provided me with a thirteen page questionnaire to complete before my first appointment: Family history, menstrual/menopausal, sexual (On a scale of one to ten how would you rate your feelings about sex, ten being excellent? My response: If I had a sex life then my response would be a resounding ten) and pregnancy details, even stress levels and emotional health to which I responded "coping well under duress." She determined through careful observation of my tongue and the ominous beeps from a mysterious gadget to measure electrical circuitry she applied to various points on my body that I did, in fact, have discomfort in my right hand, that I had liver, gallbladder (there isn't one) and pancreas issues as well as lower intestine, and my grief and anxiety measure was high. Whose isn't? I was trying hard to swallow my skepticism.
After describing to me the procedure of strategically placing needles into various points all over my body, first in the front, then on my back, she began. I was amazed how painless the insertion of dozens of needles was, even the four she put around the highly sensitive knuckle. I had to lie very still for over an hour, a challenge for me, only moving to roll over to do the back. To move a muscle sent rippling pain; I was pinned to the table. An extraordinary heat rose up to my face, and an overwhelming sense of relaxation made me resolve that no matter what the results, this feeling alone was worth a return visit.
My therapist advised me not to engage in any strenuous activity for the rest of the day which I don't think would have been possible given the lead that seemed to have infused my limbs. I simply curled up on the couch at home and rested my very heavy arm. It wasn't an uncomfortable feeling, more as if my arm was taking control, rebelling and refusing to get up off the couch to work. My body was overriding my usual restlessness.
Over the next few days my finger was still as stiff and swollen as before but the pain had subsided, a feeling akin to the effects of the anti-inflammatory medication when it worked. The difference was the length of time, the acupuncture relief lasting about four days compared to just a few hours on the medication if I was lucky. I have now had three appointments and the results remain the same for my finger, very modestly successful.
But the most surprising results were completely unexpected. The menopausal hot flashes that had been plaguing me every two hours through the night and had forced me to strip down at embarrassing moments during the day, all but disappeared over the first four days after the initial treatment. As well, all the lingering digestive complaints I had after the gallbladder surgery vanished too. These results have been constant and sustained. A huge relief.
Having perfected my emotional survival instincts over the years by pushing everything down beneath a hard shell, I was less prepared for another possible effect of this human pincushion technique. I began to see my hot flashes metaphorically, as suppressed emotions steaming beneath the surface. As they cooled and condensed with the treatments, the tears began to flow and hidden hot anger was pushed out over the weeks. A surging despair and loneliness were washed away with the waters, a necessary purging.
I will return for more treatments for the foreseeable future. I don't know if my finger will improve beyond the moderate pain relief but already my quality of life has improved with increased sleep and general well-being, essential for survival in this job of caregiving. In the meantime my doctor can investigate other strategies if they exist.
*Acupuncture chart from the Ming Dynasty: The Pericardium Meridian of Hand-Jueyin
After describing to me the procedure of strategically placing needles into various points all over my body, first in the front, then on my back, she began. I was amazed how painless the insertion of dozens of needles was, even the four she put around the highly sensitive knuckle. I had to lie very still for over an hour, a challenge for me, only moving to roll over to do the back. To move a muscle sent rippling pain; I was pinned to the table. An extraordinary heat rose up to my face, and an overwhelming sense of relaxation made me resolve that no matter what the results, this feeling alone was worth a return visit.
My therapist advised me not to engage in any strenuous activity for the rest of the day which I don't think would have been possible given the lead that seemed to have infused my limbs. I simply curled up on the couch at home and rested my very heavy arm. It wasn't an uncomfortable feeling, more as if my arm was taking control, rebelling and refusing to get up off the couch to work. My body was overriding my usual restlessness.
Over the next few days my finger was still as stiff and swollen as before but the pain had subsided, a feeling akin to the effects of the anti-inflammatory medication when it worked. The difference was the length of time, the acupuncture relief lasting about four days compared to just a few hours on the medication if I was lucky. I have now had three appointments and the results remain the same for my finger, very modestly successful.
But the most surprising results were completely unexpected. The menopausal hot flashes that had been plaguing me every two hours through the night and had forced me to strip down at embarrassing moments during the day, all but disappeared over the first four days after the initial treatment. As well, all the lingering digestive complaints I had after the gallbladder surgery vanished too. These results have been constant and sustained. A huge relief.
Having perfected my emotional survival instincts over the years by pushing everything down beneath a hard shell, I was less prepared for another possible effect of this human pincushion technique. I began to see my hot flashes metaphorically, as suppressed emotions steaming beneath the surface. As they cooled and condensed with the treatments, the tears began to flow and hidden hot anger was pushed out over the weeks. A surging despair and loneliness were washed away with the waters, a necessary purging.
I will return for more treatments for the foreseeable future. I don't know if my finger will improve beyond the moderate pain relief but already my quality of life has improved with increased sleep and general well-being, essential for survival in this job of caregiving. In the meantime my doctor can investigate other strategies if they exist.
*Acupuncture chart from the Ming Dynasty: The Pericardium Meridian of Hand-Jueyin
Thursday, March 7, 2013
Late Night Chats
The only time she can count on a reprieve from the screaming television and daily duties is late at night, dogs and husband safely tucked in and snoring peacefully. Usually she has a tranquil hour or two before sleep if the Parkinson's gods do not need to be placated.
A recently acquired smartphone makes internet easily accessible from her bed - too easily. Before this acquisition her laptop was also put to bed with the boys, left to sleep on the dining room table, far enough away to resist the temptation of late-night communications with friends and family. She has always been so sensible, reading a few pages then falling asleep to an audiobook or a radio interview.
But it is a lonely time; she is long over the novelty of feeling like a single girl with her own space, a recurring dream through all those years of a full house and intensive childcare, homeschooling and a husband's worsening health; the need for escape sometimes overwhelmed. These days she longs for company, nothing more than someone with whom to rehash the day, companionably propped up on the pillows, sharing the last few moments before sleep. She has hardened herself to the lack of physical contact, the only evidence of yearning surfacing in a pleasant dream now and then, but even those are rare events now...sadly.
The device that holds her escape-life sits plugged into its dock, rejuicing. It holds her audiobooks, poised to be activated during the many menopausal interruptions to her night. The comforting voices of the narrators soothe her, feel like company. It is a return to her story-telling childhood when her mother - and sometimes brother and sister - would perch on her bed to read aloud. Winnie-the-Pooh, Wind in the Willows, Grimms' Fairy Tales. She was a late bloomer in the reading department or had she just preferred the warmth of those bedtime stories to reading alone?
Last night she picked up a new book discovered at the second-hand store. A Norton Anthology of essays, "expository prose" officially. She flipped through it, a richness of brilliant writing, short nuggets to be quickly absorbed before bed. John Holt (a hero), Thomas Jefferson, C.S. Lewis, Northrop Fry, Jonathan Swift. She decided to take a random stab, opening the book anywhere after her initial browse; Margaret Laurence's "Where the World Began" beckoned to her.
It was a lovely little description of this famous Canadian writer's prairie hometown, a place she longed to escape as a teenager. Escape she did but Ms. Laurence admits that she carried "the land and town all my life within my skull", where she had "learned the sight of my own particular eyes."
The words seemed familiar to her. Lately, through the miracle of internet and Facebook, she has reconnected with old childhood schoolmates. Tomorrow, in fact, is the fortieth reunion of her high school graduating class in Vancouver, an event she had hoped to attend but has been thwarted by Michael's condition. Instead her old friends are planning a remote visit on Saturday night via computer. She is grateful to them for the idea.
These reconnections have stirred up old memories, both happy and uncomfortable. "This was my territory in the time of my youth," Margaret Laurence writes, "and in a sense my life since then has been an attempt to look at it, to come to terms with it." She reached for the too-conveniently close iphone and wrote a brief message to an even older friend who, she knew, would appreciate these words. He and she have recently reconnected through the wonders of fiber optics after being childhood schoolmates only, not really even friends. They share the experience of her father as their teacher and principal in that magical, small and isolated, northern coastal B.C. village. It was an untamed geography that reached into the soul, that tiny community set amidst the majesty and power of those violent mountains and wildlife.
What ensued was a chat about forts in the forest, bears, their love of this small town even though "the oddities of the place were endless." It was a comforting little written exchange just before sleepiness overcame her.
But she awoke this morning with a burning throat, as though scorched by long-silenced conversations and suppressed emotions left smouldering in the throat.
Kemano, British Columbia, photographer unknown.
A recently acquired smartphone makes internet easily accessible from her bed - too easily. Before this acquisition her laptop was also put to bed with the boys, left to sleep on the dining room table, far enough away to resist the temptation of late-night communications with friends and family. She has always been so sensible, reading a few pages then falling asleep to an audiobook or a radio interview.
But it is a lonely time; she is long over the novelty of feeling like a single girl with her own space, a recurring dream through all those years of a full house and intensive childcare, homeschooling and a husband's worsening health; the need for escape sometimes overwhelmed. These days she longs for company, nothing more than someone with whom to rehash the day, companionably propped up on the pillows, sharing the last few moments before sleep. She has hardened herself to the lack of physical contact, the only evidence of yearning surfacing in a pleasant dream now and then, but even those are rare events now...sadly.
The device that holds her escape-life sits plugged into its dock, rejuicing. It holds her audiobooks, poised to be activated during the many menopausal interruptions to her night. The comforting voices of the narrators soothe her, feel like company. It is a return to her story-telling childhood when her mother - and sometimes brother and sister - would perch on her bed to read aloud. Winnie-the-Pooh, Wind in the Willows, Grimms' Fairy Tales. She was a late bloomer in the reading department or had she just preferred the warmth of those bedtime stories to reading alone?
Last night she picked up a new book discovered at the second-hand store. A Norton Anthology of essays, "expository prose" officially. She flipped through it, a richness of brilliant writing, short nuggets to be quickly absorbed before bed. John Holt (a hero), Thomas Jefferson, C.S. Lewis, Northrop Fry, Jonathan Swift. She decided to take a random stab, opening the book anywhere after her initial browse; Margaret Laurence's "Where the World Began" beckoned to her.
It was a lovely little description of this famous Canadian writer's prairie hometown, a place she longed to escape as a teenager. Escape she did but Ms. Laurence admits that she carried "the land and town all my life within my skull", where she had "learned the sight of my own particular eyes."
The words seemed familiar to her. Lately, through the miracle of internet and Facebook, she has reconnected with old childhood schoolmates. Tomorrow, in fact, is the fortieth reunion of her high school graduating class in Vancouver, an event she had hoped to attend but has been thwarted by Michael's condition. Instead her old friends are planning a remote visit on Saturday night via computer. She is grateful to them for the idea.
These reconnections have stirred up old memories, both happy and uncomfortable. "This was my territory in the time of my youth," Margaret Laurence writes, "and in a sense my life since then has been an attempt to look at it, to come to terms with it." She reached for the too-conveniently close iphone and wrote a brief message to an even older friend who, she knew, would appreciate these words. He and she have recently reconnected through the wonders of fiber optics after being childhood schoolmates only, not really even friends. They share the experience of her father as their teacher and principal in that magical, small and isolated, northern coastal B.C. village. It was an untamed geography that reached into the soul, that tiny community set amidst the majesty and power of those violent mountains and wildlife.
What ensued was a chat about forts in the forest, bears, their love of this small town even though "the oddities of the place were endless." It was a comforting little written exchange just before sleepiness overcame her.
But she awoke this morning with a burning throat, as though scorched by long-silenced conversations and suppressed emotions left smouldering in the throat.
Kemano, British Columbia, photographer unknown.
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