tag:blogger.com,1999:blog-70177473054416374252024-03-13T08:59:26.662-07:00Day to day with Parkinson's DiseaseOne woman's journey caring for her husband diagnosed in 1994 with early onset Parkinson's Disease.Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.comBlogger149125tag:blogger.com,1999:blog-7017747305441637425.post-85482759075188492062017-07-06T05:46:00.000-07:002017-07-06T05:46:07.417-07:00RussiaEven though I am no longer adding to this blog, I do check in periodically to monitor the traffic. The site helpfully breaks it down to the countries where people are searching from. I am always intrigued and delighted by the universality of interest but one country in particular piques my interest. Several times through the year, there are bursts of activity from Russia, usually hundreds of hits over a week and then nothing for months until the next surge. I would be very interested to know why this is happening. I invite my Russian readers to enlighten me.Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com9tag:blogger.com,1999:blog-7017747305441637425.post-17224603132665325142016-08-09T18:20:00.000-07:002016-08-09T18:20:24.498-07:00<div class="separator" style="clear: both; text-align: center;">
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It's nearly Parkinson Superwalk time. Communities across Canada will be holding events in September to raise money for Parkinson Canada. I am working with them by offering proceeds from the sale of my book to this campaign. Visit the publisher's website to purchase: <a href="http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song" style="color: #7d181e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; font-weight: bold; line-height: 18px; text-decoration: none;">http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song</a>. From now till the end of September, for every hardcover I sell, I will give $5.00; for every softcover, $3.00; for every ebook, $1.00.Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com16tag:blogger.com,1999:blog-7017747305441637425.post-73378669949613928572015-05-26T11:45:00.000-07:002015-05-26T11:45:22.442-07:00New Ventures<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-RHkHPMPNDXE/VWS5MlA26II/AAAAAAAAAP0/gq5OYlbuiXw/s1600/NotesOfALoveSong%2Bsoft%2Bcover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" src="http://3.bp.blogspot.com/-RHkHPMPNDXE/VWS5MlA26II/AAAAAAAAAP0/gq5OYlbuiXw/s320/NotesOfALoveSong%2Bsoft%2Bcover.jpg" width="320" /></a></div>
<a href="http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song">http://www.friesenpress.com/bookstore/title/119734000016083359/Claire-Verney-Notes-of-a-Love-Song</a><br />
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The significance of the day is not lost on me as I make this announcement. It would have been my father's 96th birthday today. Jack Verney was a published writer of history, producing two books in the years after his long teaching career.<b> The Good Regiment: The Carignan-Salières Regiment in Canada, 1663-1668</b> was published in 1991 when he was 72, and <b>O'Callaghan: the Making and Unmaking of a Rebel</b> was published in 1994. The family tradition seems to be the pursuit of writing in retirement with my brother Peter Verney also following this path with the publication of his family history entitled <b>Making a Difference: the Lives of Jack and Joan Verney</b>, published in 2010. Now it is my turn. <b>Notes of a Love Song: Day-to-Day with Parkinson's Disease</b> has just been released. It is an edited version of this blog and, I hope, a much more accessible format for readers. It is available at the above link to Friesen Press in hardcover, softcover and as an ebook. In the coming weeks it will be more widely available from other booksellers such as Amazon.<br />
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It is my hope that this work will find its way into the hands of health professionals, caregivers and family members who are working with loved ones afflicted with Parkinson's Disease with Dementia, especially those who choose to care for them at home. Dr.Wendy Yeomans, Medical Director of the Palliative Care Programme at Vancouver General Hospital and Clinical Instructor in the Department of Palliative Medicine at the University of British Columbia has written a cogent forward discussing the choices available to us in the field of palliative care.<br />
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Thank you to those who have followed this blog so faithfully and to those who are newly arrived. It is your overwhelmingly positive response that inspired me to pursue this project. <br />
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com8tag:blogger.com,1999:blog-7017747305441637425.post-37038850426896085952013-11-15T14:20:00.002-08:002013-11-15T14:24:26.520-08:00Feet on the Ground<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-size: large;">She roared a bit too fast into the parking lot, music blaring. Perhaps not the best way to introduce herself to a new social group, she thought, turning the music off too late to have prevented the turning of heads. Today marked a beginning and an end.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Mid-November but the the thermometer read January. Layered clothing, warm hats, gloves, wind-breaker pants. She was stepping out on an expedition with a group of folks who were mostly new acquaintances. Her love of hiking could now be fully indulged, and since Michael's death she had been logging at least thirty kilometres a week with friends who would call spontaneously and pull her out. Nothing worked better than a hike to dispel the lingering wisps of sadness. At the very least she drags her sometimes reluctant dogs every morning for a brisk two to three kilometre spree but their aging, tired bodies allow little more. Weather is never an impediment for her.</span><br />
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<span class="Apple-style-span" style="font-size: large;">The group of about thirty folks gathers weekly for an eight to ten kilometre hike on the region's vast network of trails through the Gatineau Park, her house merely minutes away from such stunning beauty. Three subgroups formed according to fitness levels. She confidently placed herself in the top group and found she had little trouble with the pace, impressed, in fact, with the overall fitness level of the sixty-plus age group. She was possibly the youngest but by no means the fittest.</span><br />
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<span class="Apple-style-span" style="font-size: large;">She had had a plan: Three trips in two months - more travel than she has done in decades - allowed her to put life on hold for that time, to be distracted from her grief. Between journeys she concentrated mostly on estate matters but little else, except to have a policy of never turning down a social invitation. Once she got her feet on the ground after her last journey in early November, though, she had vowed to make some life decisions. Nothing huge, of course. The conventional wisdom is to do nothing rash for a year. She finds herself rattling around in her now over-large house that holds too many ghosts and sweet memories. When her children descend upon her, the house easily accommodates them, but those occasions are now rare. She will assess her needs in the spring and consider divesting herself of what now seems like a mansion. Where she might go is an unanswered question. This house needs life and love to fill it, not the empty silence that now prevails.</span><br />
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<span class="Apple-style-span" style="font-size: large;">In the meantime there is a winter looming. Already the invitations have slowed as everyone hunkers down into their fall routines and prepares for a Canadian winter. For the first time ever she finds herself dreading it, understanding in small measure why people might consider heading south for several months. But she is alone and not likely to pursue that option. Her home is here - for now.</span><br />
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<span class="Apple-style-span" style="font-size: large;">On losing Michael she also lost her job. Golden handshake. Instant retirement. Sense of purpose dangling in the breeze. Focus required after so many years of her life charted out so intricately on the map of Parkinson's disease caregiving. She wonders how she will manage as a single woman with no responsibilities in the world except to herself. So much of her self-definition has been wrapped up in her thirty-four years of happy marriage, childrearing, caregiving, homeschooling, community service...loving. She knows little else so her heart immediately thinks of other ways to be of service to her world.</span><br />
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<span class="Apple-style-span" style="font-size: large;">After years of caring for Michael through life and death, as well as logging many hours at the bedside of other terminally ill family members, she has developed a high comfort level with illness and the mystical process of dying. Her round-the-clock care of her husband allowed her to see the process in all its horror, mystery and beauty. Very little fazes her now. She has been urged to pursue some aspect of palliative care and she knows she is well-suited to the work. One night, immediately after returning home from the last adventure, she sat down at the computer and mused about the next step. Within seconds she found herself on a website for a local homeless shelter that, remarkably, is also home of the only hospice for the homeless in North America. Her fingers were filling out the online application form before she knew what she was doing. Before even completing and officially submitting it, somehow the channels were opened and an email dropped into her inbox thanking her for her application. Huh? How was that possible? Taking it as a sign, she continued to fill out the lengthy form and redundantly pressed the submit button. Within a few more seconds another email arrived giving her the dates of information sessions at the shelter, the first one being held the following night. The path seemed to be clear.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Everything happened quickly. Her interview was arranged for the afternoon following her first hike with her new group. A game-changing day. A police check is all that stands in her way to what might become her life work.</span><br />
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Photo by Claire Verney, November, 2013.<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com6tag:blogger.com,1999:blog-7017747305441637425.post-15627740265741420242013-09-29T04:20:00.000-07:002013-09-29T04:20:39.506-07:00Flying Solo<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-size: large;">The suitcase sat in an empty corner of her bedroom, labels dangling from its handle, its brand-newness glittering. Deep red, her favourite colour, and the recommended hard shell. The manufacturer promised it to be lightweight. Lightness of being was what she was aiming for. That and a tough exterior. Could the two be achieved together in anything other than luggage?</span><br />
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<span class="Apple-style-span" style="font-size: large;">The days after Michael's death were filled with post-mortem duties: funeral, estate matters, and the necessary grieving. She had felt raw, emotions spilling over without regard for others, in the time after her children had left to return to their lives. The feral screams that had come out of her in those early days filled the forlorn house with a heavy sadness. Her throat burned from the sometimes uncontrollable spasms of despair that wracked her when she was totally alone. The dogs couldn't stay inside when she collapsed. They'd rush outside then slink back in, quietly observing her to be sure it was safe.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Her sleepless brain was muddled with all it had to do. The paperwork was staggering. She waited until she was alone to tackle any of it. Normally able to manage several tasks at once, she found she could only focus on a single job at a time, concentrating on the most important first. Much of it, after perusing a detailed list she had composed long before his death of all that would need attention, she left to collect dust on a dining room chair - her office - for weeks. How do people who lose loved ones suddenly and tragically cope with the heavy load of administrative red tape? Michael's death had been expected and she still felt confused and overwhelmed some days. Friends kept her well distracted and away from home.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Family urged her to get busy and start traveling. Everyone, in fact, had a plan for Claire but Claire, who, during the years of caring for such infirmity, had not been able to see beyond the hour in front of her. She had rarely even allowed herself to imagine a future beyond Michael's onerous care. Invitations and suggestions flew in from far and wide. Her head spun with the possibilities of a vast world suddenly laid at her feet. Publish your blog; concentrate on your writing; visit the kids; do more volunteer work; travel to England and Israel. A possible but unlikely writing contract was presented. Even men, old and new, entered the scene to offer solace, some flattering, others disturbing. The ink on the death certificate was barely dry when she was asked out on her first date, a mildly awkward event over coffee that she accepted only because she didn't know how to say no without causing offence.</span><br />
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<span class="Apple-style-span" style="font-size: large;">She sat and thought about her priorities. Her first port of call would be her daughter's home where a new grandson blossomed. That would be the September visit. Then she could nip off to Vancouver to a family wedding she had thought there would be no hope of attending. Attached to that would be a multitude of reunions as she visited a city she had once lived in forty years ago. That would be the October distraction. Then November might be a more decadent diversion to reconnect with an old friend who had suddenly and boldly materialized, at least on the internet, from the distant ether of her past. That one was crashing into her sleep and flushing her face. She scolded herself: What was she doing thinking such thoughts, so recently a widow? Indecent, and yet she felt a strange recklessness and no guilt.</span><br />
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<span class="Apple-style-span" style="font-size: large;">But to accomplish all this she must face a major hurdle. Flying had been a nightmare, for decades invading sleep with horrific scenarios. In fact, for thirty-four years she had avoided it except for the emergency trip back from Winnipeg in 2009; Michael's Parkinson's psychosis had ramped up and out of control on what was to have been a restful and peaceful train journey across the country. She had been forced onto an airplane with him and hadn't even felt very nervous- had had no time to consider it in the urgency of his condition. In retrospect that had been the blessing that might have broken the torturous spell. Michael had beamed at her in the next seat, so obviously happy. She had gripped the seat tensely but hadn't felt the customary panic.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Could she do it again? Her strategy before her September flights was to not think about it. The nightmares were kept at bay. Even up to the moment of stepping onto the plane she was calm. Over the years of his care she had mastered the art of avoidance and staying only in the moment. She was hopeful.</span><br />
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<span class="Apple-style-span" style="font-size: large;">There were two short flights required to get to Thunder Bay. She opted for the airline with the biggest vehicles, reasoning that they would be more stable. Her first flight, just after dawn and a sleepless night of November imaginings, was uncomfortable and angst-ridden but not paralyzing. She prayed and summoned Michael's assistance, wondering if the sudden flickering and malfunctioning of the television screen in front of her was his doing. Hardly comforting. The second flight the same. On arrival in Thunder Bay that morning she felt weakened, tired but relieved. The solid ground felt sacred but she resisted the urge to genuflect publicly. It might have been a combination of her overall fatigue with the anxiety that left her feeling ill the rest of the day. She chose not to think about the return flights and immersed herself in the loving glow of family.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Finally, at week's end she considered her options for the return journey. Should she just succumb to the anxiety? Could she somehow pharmaceutically alleviate the angst? With all her experience with Michael's anti-anxiety medications and their side effects, she was unwilling to try anything that might cause more disturbance in her brain as they sometimes had for him. Though alcohol was no longer a part of her life, she had had experience with its calming properties during anxious flights of her youth. She felt justified in its use as a medicine.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Another daughter who had come to Thunder Bay for a visit happened to be returning to her home at the same time of day. The two of them sidled into the tiny bar at this small airport and downed a quick glass of sour wine. Immediately a rosy heat permeated her body, a welcome calm. The last person to board, she nearly skipped onto the plane minutes before take-off and took her assigned middle seat next to an attractive older man. He struck up immediate conversation and when she confessed to her nervousness and the wine, he admitted he had detected both. He kept her engaged in vibrant chitchat the entire journey, only stopping when it came time to say good-bye. She hadn't had a single moment of fear; she thanked him and the wine.</span><br />
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<span class="Apple-style-span" style="font-size: large;">The second flight home was more challenging with nobody willing to talk, an empty seat and a silent man - fellow sufferer? - next to her. She allowed herself no more wine knowing she had to drive as soon as she hit the ground in Ottawa. How ironic would that be to die in an alcohol-soaked car crash after surviving the flight?</span><br />
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<span class="Apple-style-span" style="font-size: large;">And of course she did survive. Her rational brain, while she scrutinized the smiling faces of the flight attendants for subtle signs of panic, ran through all the comforting statistics as her knuckles turned white with landings and take-offs. At least she has now achieved a level of ease where, though she still thinks of every alternative mode of transportation to flying, she accepts there is nothing for it if she is going to spread her wings finally and participate in the world.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Instead of the usual nightmare the night before her first flight she dreamt she was a co-pilot in a small airplane with a faceless partner as pilot. Exhilaration and joy. A good omen.</span><br />
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Photograph of Claire Verney, taken by Anna Torontow in Thunder Bay, Ontario, September, 2013.<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com8tag:blogger.com,1999:blog-7017747305441637425.post-86275945242945164702013-08-25T20:16:00.000-07:002013-08-25T20:16:23.026-07:00Eulogy<!--[if gte mso 9]><xml>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-kbRi-FMh5_U/UhrC85HMZ5I/AAAAAAAAAOg/9oZQz8iQgYg/s1600/999585_521303347924663_169352658_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://1.bp.blogspot.com/-kbRi-FMh5_U/UhrC85HMZ5I/AAAAAAAAAOg/9oZQz8iQgYg/s400/999585_521303347924663_169352658_n.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">She stepped up to the podium. On contemplating this moment six months ago, she had told herself she couldn't possibly face a room full of people. She had decided there would only be a graveside service with immediate family and closest friends. The thought of anything more nearly sank her. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
But the children had vetoed that idea. "People will want to pay tribute, Mom. We'll get through it together."</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
She hadn't been convinced. Perhaps her fatigue from the constancy of the job bestowed upon her warped her sense of sharing. Perhaps she just needed to not think about it.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
Then things started to change in the six weeks that preceded his death. As she came to terms with the inevitability of his passing and with hosting a tribute, she thought about those she wanted to participate. Her spiritual community had already shown such willingness to help over the years, she knew she could count on them for help. She turned to her good friend who readily accepted the task of helping her organize the event. It was premature, yes, but she really didn't know how she would feel after his passing, knowing instinctively that he wasn't going to go easily. Better to be somewhat prepared because it would be a long and exhausting final chapter.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
When she thought about eulogists, she had a few names of good men who had known Michael through various stages of his life. She would approach them. She had never done any confident public speaking in her life but in her heart she knew she must be the one to deliver the main eulogy. Oddly, she felt no fear.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
When the day finally arrived, she stood with her grieving children and their partners to welcome the arriving guests. As she fingered his rings on a chain around her neck, she still felt none of the panic that was so familiar to her from the past. She had been the girl in school who would shake and redden violently when she considered merely asking a question in class. At times she felt as though nothing had changed in all the intervening years.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
Over the past few years of his overwhelming care needs, she had developed a strategy of never looking beyond the moment they were in. Sure she'd have to plan a few things ahead of time, but, after so many calamities that had brought about so many cancellations, she had learned never to bank on anything...ever. She easily fell into the same strategy for facing the funeral. Stay in the moment. Don't worry about the future. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
So as she stepped up to the podium, she realized a small miracle had occurred. She still felt no fear. None. How could that be possible? She took a breath, looked at the large crowd before her, then launched into what felt like the most natural thing in the world. She smiled to herself. Thanks, Michael:</span><br />
<span class="Apple-style-span" style="font-size: large;"><i><br /></i>
<i>This has been a long road,
folks, and here we are today to say goodbye to Michael. Thank you for joining
us. <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Many of you before me today
have stood with us offering your loving support over the years and there are
many more who could not be with us. I made a list of all those who gave so much
physical and moral support but the list was so long I’d be here all day reading
those names. Suffice it to say we have been well loved and well looked after. <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>I therefore send out my
humble gratitude to my community, my dear friends, the amazing Quebec health
care team that made caring for Michael at home a possibility and, of course, my
wonderful family. You have enriched our lives.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>But there is one person I
must single out without whom I could not have done my job. Francine C. has
been Michael’s caregiver for over three years, stepping in for me so ably and
lovingly when I needed her, caring for Michael primarily but also for me with
her calm good cheer. Thank<span style="mso-spacerun: yes;"> </span>you, my dear.
May we now continue a friendship born out of this partnership.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;">Michael was a most loving
husband, father, son, uncle, brother and friend. He was a hard working and
loyal civil servant with the Federal government for 34 years, earning him the
2002 Queen’s 50<sup>th</sup> Jubilee medal for dedicated service to his
country.</span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Most of his career was spent
with National Defence as a mechanical engineer. In his early years as a
university student he spent several summers in the wilderness of Western
Canada, working as a geologist. <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Leaving nervous parents behind
in Ottawa one summer, he hitchhiked across the country and landed in Jasper
where he spent the season in the kitchen of the Jasper Park Lodge. He was
long-haired and wild looking, judging from the photos I’ve seen of him from
that time. <span style="mso-spacerun: yes;"> </span><o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>As an enthusiastic and
capable participant in many sports, Michael excelled as a hockey goalie and a
soccer player. I am told he still holds the record for the most goals scored in
a season of Chelsea Old-timers’ soccer. In fact<b style="mso-bidi-font-weight: normal;"> </b>the Michael Torontow award
was established for “spirit, perseverance and dedication to Chelsea Soccer” of
which Michael was the recipient twice during his many years of playing the
game.<span style="mso-spacerun: yes;"> </span>He won many other sports awards
during his life as an athlete, including the Best Goalie award in a local
Old-timers’ hockey league. His wry comment on receiving that award was: “What
does that say about the league when an Old Fart with Parkinson’s Disease wins
best goalie?” <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Michael coached soccer to
many children, including most of our own. He was well known for his skill and
gentleness as a coach. Sports were his passion. In fact, I believe he thought
about sports more than almost anything else. On his deathbed one morning he had
a moment of lucidity. He looked at me earnestly and said, “It’s almost over.”
Thinking this was finally the moment to talk to him about what he was facing, I
gripped his hand, looked him in the eyes and said, "You’re right. How are you
feeling about that?" His response: “Just as soon as Emily scores that goal.” <span style="mso-spacerun: yes;"> </span>Oh.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>His punning skill knew no
bounds and was affectionately dubbed “Dad humour” by his children: When asked
by an offspring one day “Did so-and-so turn up?” his witty response was, “Yup,
she radished too.” <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>He was always quick to break
into an appropriate (or inappropriate) song from his vast repertoire of popular
music. The innocuous word “pickle” could never be uttered in our house
without<span style="mso-spacerun: yes;"> </span>Dad breaking into Arlo Guthrie’s
“I don’t wanna pickle, I just wanna ride in my motorsickle.”<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>We met in the summer of 1979
while I was holidaying in Ottawa from my home in Kingston. I had met my brother
Peter after work one Friday afternoon along with a number of his work colleagues.
Michael and I barely spoke to each other during that pub visit and subsequent
dinner but I can tell you there was much significant eye contact across the
table. My friend had sat next to him actually and chatted enthusiastically with
him all evening. Later the three of us broke away from the group to go for a
coffee. My friend and I happened to be staying in his downtown neighbourhood so
we all walked home together that night promising to see each other during the
rest of our stay. Afterwards, my friend told me I should check him out,
declaring he was such a great guy. This I already instinctively knew but wasn’t
letting on a thing to my friend. <span style="mso-spacerun: yes;"> </span>I did
some quiet research through my brother then took things into my own hands since
Michael had dropped the ball and never got in touch – something about important
sports commitments no doubt. I contacted him myself when I got back to
Kingston. That weekend he visited me, starting our whirlwind romance that saw
us married less than a year later. I can still see him climbing out of his car
that first time and crossing the street to my house as I watched nervously from
my window. Bearded, sunglasses, loose-fitting Indian cotton shirt, faded blue
jeans, sandals, tanned, long hair. Devastatingly handsome. The rest is
magnificent history. I take full credit, though, for making sure things got
going in the first place.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Michael was always quietly
supportive of every interest and commitment in my life. About twenty years ago
I joined the Baha’i Faith, which ranks with my children and my marriage as one
of the most important aspects of my life. Michael never seemed attracted to the
Faith himself but he stood by me in that decision and attended many community
events throughout the years. He was a staunch defender of the Faith to anyone
who questioned him about it. Four years ago Michael’s battle with Parkinson’s
disease affected his mental health very violently. Suddenly beset with extreme
psychosis and anxiety, he was overcome. It took a long time for the doctors to
help him pharmaceutically with his troubles so the only tool I had at the time to
help him was prayer. Together we chanted prayers hour after hour until he was
calmed. This was a practice we kept up together until the end and it was the
recognition of the calming power of prayer that led him to declare that he too
wanted to become a Baha’i about three years ago.<span style="mso-spacerun: yes;"> </span>It was one of the most joyous moments of our
time together.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>I will sorely miss my husband
and best friend of 34 years.<span style="mso-spacerun: yes;"> </span>He
struggled with Parkinson’s Disease for twenty years, nearly two-thirds of our
lives together and almost one-third of his own life. His care in the final
years was fulltime and onerous but I am grateful we were able to keep him at
home until the end. It was a privilege. <o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>He was afflicted with a
disease that sapped nearly everything out of him, everything, that is, but his
courage, grace and courtesy, which remained untouched to the end. He was truly
a gentle man…a true gentleman.<o:p></o:p></i></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-size: large;"><i>Please join us as we sing the
prayer that meant so much to him and helped him through some very dark times</i>.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
Two of her friends led the congregation in a chant of ninety-five Allah-u-Abha's. With her eyes firmly shut she sang as best she could, breaking into frequent wracking sobs. A few reported to her afterwards the lights had mysteriously dimmed during the prayer. </span><br />
<br />
*Photo of Michael Torontow taken by Claire Verney, circa 1981</div>
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<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com44tag:blogger.com,1999:blog-7017747305441637425.post-53426241194788964542013-08-19T18:38:00.000-07:002013-08-20T14:33:05.168-07:00The Other Shore<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-RF8bsWCY_BY/UhLEuPtXPsI/AAAAAAAAAOQ/gau6mUcpL-M/s1600/Great_Blue_Heron_(8555134987).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://2.bp.blogspot.com/-RF8bsWCY_BY/UhLEuPtXPsI/AAAAAAAAAOQ/gau6mUcpL-M/s640/Great_Blue_Heron_(8555134987).jpg" width="426" /></a></div>
<span class="Apple-style-span" style="font-size: large;">She slowly dipped her body into the frigid waters of the Gatineau River. Her hardier friend beat her to it and paddled lazily nearby. The two women chatted comfortably about the momentous events of the past week. A husband buried. A family bereft.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">As her legs and body cooled, then chilled, she announced she would swim across the bay before she became numb. A hundred meters or slightly more, not far. It is a familiar swim that she has been repeating for years over to the other shore. She used to set out very early each morning before sickness made it impossible for her to leave him alone. She had had to adjust her swim time to suit the caregiver's timetable. No more six a.m. dips.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">But that early hour had held a mystical quality. The eastern bank was always still in deep shadow. The dogs would prowl the shoreline and complain to her as she swam, urging her to come back, afraid she might abandon them. As she pushed away from the shore, there might be a curling mist rising in the new day or the water might be very choppy on a windy morning, making her more focused and careful to regulate her breathing as she battled the waves. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">There was always something magical to her about the other shore where her feet would grope for the shallow rocks. She would stop and turn, face east, and offer praise and gratitude, in the dawn light, for strength of body and the grace she'd been granted.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The return swim was always to the symphony of barking dogs but she willed herself to chant her prayer through her breathing, ignoring them while she could, eyes firmly shut, sunlight leaking through her lids. Tails wagged; sticks were retrieved as she pulled herself out of the water onto the rocky shore. She always felt restored and able to face whatever the day might bring.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Today, there were no such worries. A husband was gone. The dogs had been left behind at home, their walk earlier in the day. Her friend had summoned her outside now that she was unfettered and able to leave her house any time she pleases. An alien luxury. The swim across the bay was through calm waters, the air still and silent in the summer heat. As she approached the shore she caught sight of a shape ahead. Tall, statuesque, a picture of grace. The magnificent blue heron made eye contact, barely two meters away from her. She wanted to shout to her friend left behind but didn't want to break the spell. It felt as though he was waiting for her alone. She was entranced and awed and waited for him to make a move. After several minutes of complete stillness, he moved away slowly from her into the trees and disappeared.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Later, after her return to the other side and her excited account of her experience, they watched him take flight, his vast wingspan carrying him away from them to a distant bank.</span>Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com7tag:blogger.com,1999:blog-7017747305441637425.post-18751010505543393202013-08-13T15:42:00.000-07:002013-08-15T05:16:45.048-07:00Michael David Torontow<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-TJS1Gf9tPeY/Ugq0X6eaqDI/AAAAAAAAAOA/zc7NPVgak-0/s1600/1091115_10153155277935515_1422065144_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://4.bp.blogspot.com/-TJS1Gf9tPeY/Ugq0X6eaqDI/AAAAAAAAAOA/zc7NPVgak-0/s640/1091115_10153155277935515_1422065144_o.jpg" width="482" /></a></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-size: 20.0pt;">It is with great sadness that we announce the peaceful
passing of Michael David Torontow at home on Tuesday, August 13, 2013 after a
long and gracious struggle with Parkinson’s Disease. He was 65 years old,
having spent over 20 years afflicted with a disease that sapped nearly
everything out of him; everything, that is, but his courage, grace and courtesy
which remained untouched to the end. <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-size: 20.0pt;">He is survived by his best friend and wife Claire
Verney and his adoring children Anna (Darren Seed), Emily, Laura (Mike
Cicchillitti) and William (Rhian); his precious grandson Emmett Albert Michael
Seed; his mother Norma and his brother Laurence (Silvia). He will be remembered
by brother-in-law Peter Verney (Linda Barber), nieces Kristine Kakuno and <span style="mso-spacerun: yes;"> </span>Andrea Torontow, and nephew Michael Torontow.
He is predeceased by his father Cyril Torontow, sister-in-law Ann Kakuno and
her husband Fred Kakuno. We will miss him terribly.<o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-size: 20.0pt;">Funeral service will be in the Sacred Space at
Beechwood Cemetery, 280 Beechwood Ave, Ottawa, at 10 a.m., Friday, August 16,
2013 followed by a burial ceremony and a reception.<o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-size: 20.0pt;">A memorial donation would be appreciated to Right to
Play whose mission it is to promote “the use of sport and play to educate and
empower children and youth to overcome the effects of poverty, conflict and
disease” at righttoplay.ca .<o:p></o:p></span></i></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com4tag:blogger.com,1999:blog-7017747305441637425.post-64994757572574630772013-08-11T04:43:00.000-07:002013-08-11T04:43:11.348-07:00Bedside Musings Part 2<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-tvWe6xAbJkU/UgWQy7xdVgI/AAAAAAAAANw/fI-JWVLrXFE/s1600/MusikschuleDornbirn5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://3.bp.blogspot.com/-tvWe6xAbJkU/UgWQy7xdVgI/AAAAAAAAANw/fI-JWVLrXFE/s640/MusikschuleDornbirn5.jpg" width="442" /></a></div>
<span class="Apple-style-span" style="font-size: large;">Early morning sunshine fills the room. Rainbow prismatic fireflies dance about on the walls and sheets, sometimes forming a halo around the still figure in the bed. A crow complains beyond. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His world has become very small but sometimes is filled with dogs and people communing around him. The ceiling fan purrs and the curtains murmur; the room has a chill despite the season. The air must be kept circulating to rid it of the sickly sweet smell of ketosis. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His breathing has a new pattern, more off than on. Funny what we can get used to. Those long pauses alarmed us at first but are now commonplace. Conversation will stop as breathing stops. We wait, all of us instinctively taking in large breaths for him.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His eyes might flutter open but are mostly either closed or half open. He doesn't see us any longer. Without any medication for several days, his body is nearly frozen. Without water for three, his mouth has a terrible dryness that we try to ease for him with moistened sponges. He seems oblivious to that discomfort. Except for the erratic, sometimes noisy flow of air in and out of his lungs, he is silent.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The only anguish he might display is a grimace or two when we try to bathe him, now most definitely a two-person task. His rigid body wants to refuse our manipulations. Developing bedsores are covered with special rubbery bandages. We are reluctant to subject him to what now seems to be an uncomfortable procedure. I find myself whispering apologies in his ear, wishing I could somehow make this better.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His life hangs by a sigh.</span>Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com5tag:blogger.com,1999:blog-7017747305441637425.post-50570013258496411552013-08-05T11:53:00.001-07:002013-11-24T04:48:58.055-08:00Sacred Rituals<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-Mz5MVVRYw0g/Uf_wjeLP40I/AAAAAAAAANg/-OkxlsONhQU/s1600/Sainte-Chapelle-Rose-window.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://2.bp.blogspot.com/-Mz5MVVRYw0g/Uf_wjeLP40I/AAAAAAAAANg/-OkxlsONhQU/s640/Sainte-Chapelle-Rose-window.jpg" width="464" /></a></div>
<span class="Apple-style-span" style="font-size: large;">The minutes tick by. The house remains silent. Even the tired old dogs barely wake up for visitors or passersby. Occasionally there is an unexplained burst of wild, crazy energy from the little Scottie. They have been Michael's nearly constant companions but today they stay away more from his room. Could the strong odour that now emanates from that space be the reason? Are they more attuned to what is happening in that room?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The daily task of bathing Michael is a welcome one. It is an opportunity to renew the rosewater scent that I have been using for the past week but which no longer masks what might be the smell of imminent death. Every day, with or without assistance, I engage in a ritual which has nearly taken on a spiritual significance for me.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I start with a clean cloth and gently wipe the eyes, remembering techniques used when my children were babies. Then the cloth is dipped in warm soapy water and I ever so slowly wash Michael's face and hair. I take special care not to rub too hard but sometimes have to with his now fairly long beard. The last time I shaved him was nearly two weeks ago, if not longer. It just seems like too much trouble now but I know he doesn't mind. He was pretty shaggy when I met him so it is a nice reminder of that handsome man I fell in love with. But now that the beard has greyed it most certainly ages him more than the clean face does.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Next each arm and hand is caressed with the cloth, paying special attention to the palms of his hands which have developed a slight cheesy smell. Careful drying is important. Then, with his shirt still on, I reach underneath to rub his chest, and his legs and his feet. I stop at his knobby knee, the one that took the brunt of thousands of falls, and rub it with affection. To me it symbolizes Michael's resilience and strength with the calcified bumps and a few remaining scabs that dot the knee.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Now comes the challenging part if I am alone. I must be certain that I am well prepared and have all that I need ready at hand because once I have him pulled up into a seated position, supporting his back, I only have one hand free to do the rest, unless he is able to grab the bars of the bed and hold himself up. That is becoming less likely with every passing day. I whisper what I am about to do, then pull him up to a sitting position. The t-shirt must be pulled off with my free hand, careful not to hurt him. Then I am able to wash his back, his neck and the back of his head. Underarms too, then a generous application of deodorant. Now the clean t-shirt goes on, again with great care. My tendency to be quick and efficient has been replaced with a deliberate slowness and calmness. We have all the time in the world for such things.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I lay him back down onto the clean pillowcase that has had a fresh spritz of rosewater applied to it. He sinks into the pillow with what seems like relief. Next comes the diaper area, left always to the end. A clean waterproof mat is ready to replace the old when Michael is rolled over, as is a clean diaper. First I roll him to one side, careful to use my whole body, not just my back, a technique I learned years ago while caring for him at home after his heart attack. The squeezed-out cloth lies ready over the rail. Once all the washing is done on that side and the diaper has been removed, it is time to partially unroll the waterproof mat to the halfway point and the old one rolled up ahead of it. When Michael is pulled over to the other side of the bed, it is simply a quick action then to remove the old mat and pull the clean one fully into position, as well as to finish the positioning of the clean diaper. Once returned to his back, more adjustment might be necessary to the diaper before it is closed.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">This process always moves Michael down the bed so that his feet touch the base. Making sure the bed is now as low as it will go, I hook my arm under one armpit and haul him up higher to provide the clearance he needs at the end of the bed. This is when I am grateful I have a strong back. It is, of course, much easier with two people, but that is not always an option. The sheet and blanket are now pulled up to his chest and he usually sinks into an exhausted snooze immediately if he even woke up in the first place. The final step is a gentle swabbing of his mouth with the minty little mouth sponges the nurse provided and a quick application of balm for his dry lips.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The Baha'i ritual of cleansing the body before burial now makes perfect sense to me. It is an acknowledgement of the sanctity of the vessel that has contained the soul on this earth.</span><br />
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*<span class="Apple-style-span" style="font-family: sans-serif; font-size: 13px; line-height: 19px;">Sainte-Chapelle in Paris: Rose window</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com3tag:blogger.com,1999:blog-7017747305441637425.post-67593199387923552962013-07-31T19:23:00.000-07:002013-07-31T19:23:12.435-07:00Bedside Musings<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-dOMGnVtt-kY/UfnE8fanqdI/AAAAAAAAANQ/_V4_d5G27WI/s1600/Leonard_French_La_Trobe_03-2_cropped.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="398" src="http://2.bp.blogspot.com/-dOMGnVtt-kY/UfnE8fanqdI/AAAAAAAAANQ/_V4_d5G27WI/s400/Leonard_French_La_Trobe_03-2_cropped.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">She sits by his window and listens. The house is still. She has tried to concentrate on the images on the screen before her. An intelligent thriller plays on her laptop but she must make frequent stops to slow down the racing heart. Her nerve for such things has evaporated the last few days. Panic mounts far too quickly so she must guard against it. She picks up the mild romance novel, the only thing she can grasp these days, but it is about a woman who embarks on a new life and love after the recent death of her husband. Oddly appropriate under the circumstances but it irritates her. The description of the woman's relationship with her lost husband is veiled in a pink glow of perfection. But she cannot deal with anything more real in her fiction right now and she avoids all but the most bland of the world's news. She abandons the book. Instead she writes.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The room is airy and bright, his bed positioned to take in the view. When he is awake he can see only green trees, blue sky and the flowers nodding in the distant garden. And her if she is seated at his feet. If the window is open, birdsong fills the air. It is peaceful and calm, near perfection. The two old dogs snore comfortably at her feet. They rarely leave his room, the three of them breathe heavily together. When he is - was - well and up throughout the day, they take ownership of his bed. While he is so ill, they are his constant companions. She likes to think they are purely loyal but she suspects they are merely opportunistic, ghoulishly awaiting vacancy of the bed.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">She is not used to such idleness and is grateful to have him at home so she can distract herself with occasional household tasks that keep her in the house and within earshot. She is not well-suited to hospital bedside vigils, her restlessness a serious impediment. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His meals are erratic, infrequent and sometimes sparse but, miraculously, he still eats. Today he picked away at bacon and an egg, eating only some of it but with obvious enjoyment. He washed it down with sweet tea before he lapsed again into his frightening withdrawal. He seems to be so utterly lost to the world and deeply asleep but she has noticed that if she talks to him his eyes will sometimes flutter open and he might try to speak. Or if she holds his hand he might give hers a slight squeeze. Then there are the nearly comical times when he tries to make a pass at her, his eyes glazed with oblivion, his hands reaching and groping with heartbreaking familiarity. She pulls away, her sickened response clouded with guilt.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His condition mimics what she has witnessed in those who are dying but, she reminds herself, this is Parkinson's disease which confuses and confounds even the best doctors. No one will dare to make any pronouncements or predictions. She expects him to awaken one morning full of grit and vigour and climb out of bed in a psychotic burst of energy, but as the days of near-death pile up, she begins to lose hope. The spaces between the bones of his hands deepen daily. His legs barely support him now.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">A friend calls to distract and suggest a board game to while away the evening. She gratefully accepts. She doesn't mind the long, solitary vigil - she needs the quiet, calm order of the house to feed her sanity - but company is welcome. It will still the racing heart and pull her away from the window.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
Glass panel: The Four Seasons (1978), Leonard French, La Trobe University Sculpture Park, Melbourne, Australia.<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-91807759623132339772013-07-29T10:29:00.000-07:002013-07-29T16:16:51.808-07:00I'm Sorry<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-4PHE-rZ_djY/UfZYk8eMWvI/AAAAAAAAAM4/AvOfODoEnrA/s1600/Saints_Kings_Church,_3000_Ri%CC%81o_Consulado_Avenue,_Venustiano_Carranza,_Federal_District,_Mexico07_-_Sun,_Alpha_Omega.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="296" src="http://2.bp.blogspot.com/-4PHE-rZ_djY/UfZYk8eMWvI/AAAAAAAAAM4/AvOfODoEnrA/s400/Saints_Kings_Church,_3000_Ri%CC%81o_Consulado_Avenue,_Venustiano_Carranza,_Federal_District,_Mexico07_-_Sun,_Alpha_Omega.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">I am sorry if I have failed you in any way.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry I might not be able to keep this up. I had thought that when you reached this point of sleeping and being bedridden all day, it would be easier. In many ways it is, of course. You are too weak so I'm no longer having to chase you as you escape down the road. But it is quiet and lonely in the house with you tucked away needing so little. Some of your physical care is more onerous; transferring you to and from the wheelchair the few times you want to get up is more difficult with your extreme weakness and unsteadiness. But I do look forward to the new daily rituals of sponge baths and meals-on-a-tray, sometimes our only real interaction now. I spend much of each evening in the rocking chair at the bottom of your bed while you drift off to sleep. You need me there to calm you but I need to be nearby too, listening for steady breathing, not wanting to be completely alone.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry that decisions made about your medications might be better for me than for you. Your psychosis and anxiety were overwhelming both of us, rendering you paradoxically more mobile and alert in exaggerated fight-or-flight response. That is a bad combination with the weakness and instability you now suffer - your falls have become dangerous - so I have essentially strait-jacketed you with a reduction in the Parkinson's medications. That has been a relief on two counts: you are more clear-headed on fewer drugs and you are less mobile and unpredictable in your behaviour. The occasional need for anti-anxiety medication has made you sleepier. During the two weeks when you were so terribly ill and unable to take many of your pills even in crushed form, I felt the burden of this job most acutely. Every day I was having to make hasty decisions about your medications, usually alone and without support: If you can only swallow one pill, which one do I choose? I felt as though we were crossing a ravine on a tightrope and I had more than a few panic attacks. These are powerful drugs, not to be treated in a cavalier manner. But we do seem to have achieved a modicum of mental stability; the adjustments are working well, for now.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry for the times I might have been irritable and harsh, frustrated and even angry as I have traveled through a minefield of emotions. You always look back at me benignly and calmly. Your tone, when you can articulate anything at all, is courteous and gentle. It is only if you are in the midst of a psychotic melt-down that you might rise up with any strong emotion but I am never hurt by those infrequent outbursts. I know they are only you stuck in a waking nightmare where you have no control. I, on the other hand, have no such excuse.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry that I cannot always read your signals or understand your words which are usually inaudible or completely nonsensical. You have difficulty expressing anything now so I limit my questions to those that can be answered with a simple yes-no response. Even those are sometimes beyond your capability so I am left to guess, often incorrectly, when even your body language is shutting down. I am trying so very hard to tempt you with foods you might enjoy to help you regain the weight you lost on your two week near-starvation diet; you refuse most things except a few favourites. When I list the foods I think you might like, you often stare back at me blankly. When I repeat the list you then might blurt out a yes to a food on offer. I must remember you often take a while to process the information I am giving you. I must be quiet and slow and patient.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry that I am so well and you are so ill. Is this what is known as survivor's guilt? I have worked hard to remain fit and strong just so I can have the energy to manage your care with all the associated heavy lifting. Alas I feel badly that I only seem to get stronger through all of this as you become weaker. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry if decisions to keep you at home have been wrong. In my heart it feels right but I would like to have been able to consult with you on all of this before it was too late. All you ever said on the subject when you could still form such thoughts was that you never wanted to be like this, so utterly dependent. You have been gone a long time now so I've been left to make all decisions on my own for many years. That has been both empowering and lonely.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I am sorry that when the end finally comes I will probably feel a crazy mix of grief and relief. I know I will feel lost without your constant presence. I have been caring for you intensively for nearly four years, but you have been home full-time and very ill for ten. It is hard to imagine being able to make decisions freely without consideration of anyone but myself. I am sorry that I even find myself thinking of a life beyond all of this and especially for the small thrill beneath the terror that I feel at the prospect.</span><br />
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<span class="Apple-style-span" style="font-family: sans-serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-size: 12px;">*</span></span>Saints Kings Church, Venustiano Carranza, Mexico: Stained glass windows Sun, Alpha Omega<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com8tag:blogger.com,1999:blog-7017747305441637425.post-3282101859486163922013-07-22T19:53:00.000-07:002013-07-28T16:19:26.690-07:00The Phoenix<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-QTSFhqknDp0/Ue3sqio5_tI/AAAAAAAAAMo/WUXFOhg2CnE/s1600/Phoenix_tombstone,_Fyvie_Kirkyard_-_geograph.org.uk_-_294698.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://4.bp.blogspot.com/-QTSFhqknDp0/Ue3sqio5_tI/AAAAAAAAAMo/WUXFOhg2CnE/s640/Phoenix_tombstone,_Fyvie_Kirkyard_-_geograph.org.uk_-_294698.jpg" width="466" /></a></div>
<span class="Apple-style-span" style="font-size: large;">He placed invisible glasses onto his face as she spooned mushy cereal into his mouth. He chewed an inordinately long time for nearly pureed food. She had to cue him to swallow. It had been fourteen days of near starvation, one tiny meal a day if that, but today seemed to be a turning point.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">She had always hesitated to summon the family when calamity struck; it strikes so often. He was like the phoenix rising from the ashes, his memory wiped clean of the catastrophe from which he emerged each time and the emotional havoc it created. But this episode had seemed different. It looked like the final chapter to the story. How could he possibly pull out of the death throes that gripped him? Now, though, it seems there will be another season after all.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The family arrived, one very doubtful of the severity and mildly annoyed, the others staying longer and committing to the vigil. After a week, she finally sent everyone home to their lives, promising herself not to subject them to that again. They had all said their tearful good-byes at his bedside. She held her breath in the now empty house to see how the change in atmosphere would affect his fragile psyche. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He awoke finally late in the afternoon, following the new pattern of sleeping up to nineteen hours at a stretch. She pulled him up out of bed and into his wheelchair, an increasingly difficult task as his weakness deepens. His muscle wasting and thinness are alarming. She transferred him to the couch for a few hours of snoozing in front of the television and suggested food to him every hour. To her surprise he agreed to her offerings and for the first time in a fortnight he had three tiny meals during his few slightly wakeful hours, three more than many other days during this latest crisis.</span><br />
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<span class="Apple-style-span" style="font-size: large;">If she looked away distracted from the task of feeding him, he fed himself invisible food but he was unable to grasp a real spoon to guide it to his mouth. This new condition requires her constant attention. At least, she tells herself, it is only a few hours of the day...for now.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">She has long been used to shifting gears and quickly changing direction in his care if necessary. She is a master, in fact. The mystery and complexity of Parkinson's disease demand it. But this time was the closest he had ever come to the grand finale and she felt limp and exhausted when finally left alone with this man who seems so fragile and needy on the outside and yet must be built of steel on the inside. She wonders how many more times he will be consumed by the flames and emerge intact. Could she herself weather the conflagration again?</span><br />
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<span class="Apple-style-span" style="font-size: large;"><br /></span>
Phoenix tombstone, Fyvie Kirkyard Scottish gravestone, 18th or 19th century.<br />
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<span class="Apple-style-span" style="font-family: sans-serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-size: 12px;"><br /></span></span>Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-41592735250898703512013-07-19T16:55:00.003-07:002013-07-19T16:55:31.640-07:00Silver Linings<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-JDnpatq9BQ4/UemHWj2hFqI/AAAAAAAAAMY/nRqQ0YrnHm4/s1600/silver+linings.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-JDnpatq9BQ4/UemHWj2hFqI/AAAAAAAAAMY/nRqQ0YrnHm4/s400/silver+linings.jpg" width="298" /></a></div>
<span class="Apple-style-span" style="font-size: large;">I have sat down to write this many times without success. Words failed me. My emotions have run the gamut of abject grief to anger to joy to relief to acceptance. There have been fatigue, laughter and tears so it has been difficult to settle on a tone for any piece I started to write.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br />
After nearly a week of extreme illness, last Friday we hit rock bottom. All week since the onset of the urinary tract infection, Michael had only been consuming teaspoonfuls of yogurt or applesauce mixed with his medications. His consumption of liquids had dropped drastically to the point that I worried about his kidneys. He was producing very scant, dark urine and he ran a fever for five days. Intravenous fluids are impossible for Michael who rips out anything he doesn't understand. On Friday, he refused everything: water, food, medications. He fell into an unresponsive coma-like state. His breathing was an alarming mix of loud rattling and apnea. The visiting nurse declared that the end might be near so I made my calls to the family to urge immediate visits.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Perhaps he heard my telephone conversations. Perhaps it was just the darkness before the dawn. Perhaps we will never know the mysteries of life, especially end of life with Parkinson's disease. Tears were shed. Offspring made hasty arrangements to get home quickly. I wept my good-byes at my inert husband's side. At times he seemed to be communing with invisible beings who kept him amused and separated from this world. But then he awoke late in the afternoon fairly clear-eyed. He could not speak, probably from the starvation diet he had been on, but he was back temporarily. In fact he had had no medication for twenty-four hours and no food for longer but somehow was able to walk a few steps without stumbling. I was astounded.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Our four children arrived home with all of them under our roof by early Saturday afternoon. Michael by then had relapsed but once again rallied for a time in the evening, a pattern that has continued all week with varying levels of activity and anxiety. I was grateful for the opportunity to consult with the kids face-to-face about end of life issues for their father.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The most wonderful gift has been meeting our grandson for the first time. Michael instinctively reached out for this precious child one afternoon and held him to his chest, prompting stifled tears from those of us witnessing the event. On another occasion, Baby Emmett treated us to a noisy emptying of his bowels while we dined. Michael had joined us at the table in his wheelchair just in time to hear the eruption. His face broke out into a broad grin that I haven't seen in years. Scatological silliness obviously never fails to entertain. Incontinent himself now, Michael must have felt a kinship with his small grandson.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Michael has gone thirteen days with no more than about two hundred calories a day, if that, though he is drinking enough to sustain life. He sleeps most of the day but manages to be up and out of bed part of each day too, communing naturally but silently with us. The dogs keep him company in his room. Those of us still here tending to his needs spend our days laughing and playing with the baby. We make meals, watch television, chat and drink tea. On consultation with Michael's doctor we have all agreed to keep him at home and comfortable and avoid all hospital intervention if possible. To do otherwise would hurl Michael into a panicked state of anxiety which would require staff to strait-jacket him either physically or chemically in a foreign environment. We prefer to keep him happy and calm at home, interacting as well as he can with family, dogs and visitors.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I do not know if this is the end for Michael or, if it is, how long he might have left. But we are all in acceptance of whatever might come now and grateful for the brief moments of clarity we have been able to enjoy this week with him.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
* Photograph by Claire Verney of (L-R) Anna Torontow, Michael Torontow, Emmett Seed and Laura Torontow.<br />
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Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com5tag:blogger.com,1999:blog-7017747305441637425.post-51653028606880515372013-07-10T06:20:00.000-07:002013-07-10T07:54:13.398-07:00Fever Pitch<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-w2scycS6oio/Ud1btPO3yFI/AAAAAAAAAMI/ID1gQzKh_1s/s1600/Eva_Bonnier_-_Reflection_in_Blue_-_Google_Art_Project.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-w2scycS6oio/Ud1btPO3yFI/AAAAAAAAAMI/ID1gQzKh_1s/s400/Eva_Bonnier_-_Reflection_in_Blue_-_Google_Art_Project.jpg" width="317" /></a></div>
<span class="Apple-style-span" style="font-size: large;">The nurse pumped up the band around Michael's arm. "This usually makes him wince," she commented with a furrow in her brow. But Michael lay inert on the bed, eyes closed, his breathing a disturbing rattle. It was 1:30 in the afternoon and he hadn't budged since bedtime the night before.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I had made my first call to the emergency care number on Sunday. It had been a crazy week of heightened mania, leaving me to wonder what changes were happening in my husband's brain and ready to bolt myself. I had consulted with the neurologist on Friday, desperately trying to find some solution to the psychosis. We agreed to reduce the amount of Comtan at the end of the day when the mania was taking full flight (It is common, in advanced cases, to reduce Parkinson's medications to control psychosis, these medications being the primary cause of this disorder). In fact, on Friday evening, the first day of the reduction, Michael was clearer-headed than he has been in a very long time. He gave me the gift of a very brief but real conversation on our wedding anniversary. It might be his last.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He had awoken at three Sunday morning but I had managed to keep him in bed until six even though he was obviously running on psychotic energy and trying to escape his bed. I finally admitted defeat and coldly ushered him into the shower and seated him at the table to eat, all well before his first dose of medication for the day. But he slumped before completing his meal and had to retreat to the couch for his morning nap. I noticed that his mobility had suddenly worsened and his confusion increased but, in themselves, not extraordinary occurrences. Were the positive effects of the Comtan reduction already over?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">It wasn't until I followed him into the bathroom after lunch to help him use the facilities that I noticed the small, violent streak of blood in his diaper, the defining clue to the previous week's mania: a urinary tract infection. I now knew how to focus my questions: Does it hurt to pee? Do you have any pain in your pelvis or back? How long have you been suffering? His responses were surprisingly clear. He had had pain on urination for about two days (could be more or less given his lack of perspective concerning time) and discomfort in his pelvis.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I made my call. The nurse I spoke to passed along my message to the roaming duty nurse that day. She contacted me no more than ten minutes later and then consulted a doctor, who, based on her knowledge of my own vast experience with Michael's care, automatically issued a prescription to our pharmacy for the same drug we've used before for this problem. With the assistance of my visiting son and daughter-in-law, I had a prescription for Ciprofloxacin in my hands within the hour, an astonishing achievement in any medical system, if you ask me. With great difficulty I collected a urine sample from Michael and rushed it up to the hospital for analysis. In the meantime, the hope is that the Ciprofloxacin will get to work until the analysis is complete, allowing a fine-tuning of the medications later if necessary.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">At this point Michael's condition plummeted rapidly. He went to bed and has essentially stayed there since Sunday, in and out of consciousness with a fever that spikes alarmingly in the evening. Except for the small amounts of yogurt or apple sauce needed to administer his pulverized pills, he is eating nothing and drinking very little, his cheeks hollowing rapidly. Yesterday was the most disturbing with the laboured breathing, prompting the visiting nurse to contact the doctor again. Michael has now had three full days of the antibiotic so I am hoping today, Wednesday, will be the turning point for him. He was certainly more alert yesterday, awake and up for an hour in the afternoon. I am insisting he stay in the wheelchair when he is up now because he is so weak from fever and lack of food he can barely walk. He seems content to stay in bed and is mercifully very calm. Last week's mania has vanished.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">On Monday, realizing that this was different than what we have experienced in the past, I felt a panic grip my heart. This is it, I thought, and picked up the phone to weep with one of my children. I have tried to prepare myself for that final separation but we never can fully. The thought of losing him felt tragic to my broken heart.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">We are all poised but, as we keep reminding ourselves, this is Michael. He has astounded us before with his resilience. One of my children brashly announced she refuses to accept it until it happens. She is not being cold; she is simply protecting herself from another round of anguish. And yet when I told her that, for the first time through her daddy's long, bumpy journey with this disease, I had whispered to him tenderly that he can go if he is ready, she was tearfully silent at the other end of the phone.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">We wait.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
*Eva Bonnier, Reflection in Blue, 1887Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com4tag:blogger.com,1999:blog-7017747305441637425.post-19435263427286184082013-07-06T05:39:00.000-07:002013-07-06T05:39:18.165-07:00No More Mr. Nice Guy<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-TmYzCeRnoeg/UdgOGupdTII/AAAAAAAAAL0/fDl8Sv2J3s8/s1600/Ichabods_chase_crop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="292" src="http://1.bp.blogspot.com/-TmYzCeRnoeg/UdgOGupdTII/AAAAAAAAAL0/fDl8Sv2J3s8/s400/Ichabods_chase_crop.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">The chair was pulled up to the bedside and I held his hand. I was anticipating a long night after such an eventful evening. This was already the third time within ten minutes of going to bed that Michael had summoned me.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He had been almost completely mute all evening but a frenzy had overwhelmed him. Like a determined toddler, he was single-minded and focused but his goal not apparent. I had tried to ignore the creeping wildness by watching a new and favourite series on Netflix but eventually gave up after frequent interruptions.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He was up and down the basement stairs repeatedly, on one occasion, when asked, to find the electrical panel. Those were nearly the only words he uttered all evening. I quickly diverted him back up the stairs after a firm refusal to show him what he wanted. Still sharply etched on my brain was the time I had found him about to insert needle-nosed pliers into an electrical outlet to fix a burned out lightbulb.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He had spent a half hour or more on the floor trying to fix the unbroken wheelchair. This task, in fact, was what seemed to have impelled him downstairs in search of the electricity. Why do so many of his projects involve electricity in his addled brain?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">His resolute silence and the seeming randomness of his actions belied the brain activity that must have been happening. When I found him about to leave the house again in his slippers, I urged him to put on proper footwear for the wet conditions outside, hoping he would simply lose interest in the plan. I refused to offer any assistance dressing him. It was getting late, it was dark and his medications would soon run out which meant it would be a calamitous walk in the rain.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Of course I was wrong. From the other side of the wall but nearly right next to him, I listened to about fifteen minutes of what sounded like a Herculean struggle to get into his jacket. As I heard the door open I rushed out to see him stepping into the rain. He was dressed in rubber boots, shorts, my sun hat and a rain jacket. I had to stifle a laugh. Most of this was perfectly normal garb for the weather but somehow he had managed to get into his jacket backwards with the zipper pulled all the way up to the back of his neck - How did you do that? Crazy but impressive - The flimsy hood was flapping in his face and he was drenched in sweat from the effort. I let him go but got my shoes on ready for another dash.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He wandered down the driveway without a single fall, then onto the road. By now I was casually sweeping the small, aborted apples from the path, keeping a sharp eye on him as he strode competently down the road. As he approached the corner I lost sight of him in the dark and behind the trees. I ran inside to grab my car keys knowing he was now far enough that he might not manage the journey home if - when - his medications suddenly ran out. By the time I had pulled up to that intersection in the car he had disappeared. Too dark to see down the safer route to my left, I went that way, certain he must have just wanted to stroll down to the train tracks, our usual route for a walk. When there was no sign of him, I knew he had instead gone toward the highway. Horror.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">By the time I got to him he was stumbling along on the shoulder close to my friend's house. He had managed to cover a couple of hundred meters in his escape. Cars sped by. I pulled into a driveway, rolled down the passenger's window and ordered angrily, "Get in the car." He stopped and stared at me defiantly. For a split second, he looked as though he might run. I prepared to jump out of the car to wrestle him inside if I had to but his shoulders slumped in defeat and he came towards the car.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">This is the point at which I felt a coldness overcome me. In a state of anger I can become cruelly articulate. It was his biggest complaint when he could still voice such thoughts many years ago. He would always back down when my anger reared, which I think - I hope - only happened on rare occasions. I began to realize slowly as the disease progressed, taking his voice with it, that he was not simply being stubborn and refusing to speak to me.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Do you know what you look like? Look at yourself.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Anybody who doesn't know you and encountering you right now would take you straight to the hospital. You are an alarming sight.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">You don't have any identification or a medical card on you should you collapse and need help (Note to self: I guess I should replace that broken Medicalert bracelet if this is our new reality).</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">You cannot leave the house without someone to accompany you. PERIOD.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">WHAT WERE YOU THINKING???</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I HAVE HALF A MIND TO DROP YOU AT THE HOSPITAL MYSELF.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">And to myself: Why on earth did you let him get this far?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He was, of course, mute and blank through my tirade. After fighting to get him belted into his seat, I drove him up to the soccer field; that must have been where he was heading. None of his buddies were there so we headed for home in the usual silence. He struggled into the house now that his drugs had worn off. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Bedtime rituals filled the last few minutes of the day. I apologized for my outburst, attempting to assure him and myself that my anger was with the disease not him. His only other words of the evening were "I love you." Then, after the initial period of bedtime anxiety, he slept a peaceful fourteen hours.</span><br />
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*F.O.C. Darley, Ichabod's Chase, 1849<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com3tag:blogger.com,1999:blog-7017747305441637425.post-20026784156679173872013-07-01T21:58:00.000-07:002013-11-24T06:03:09.861-08:00How to Paint a Chair<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-W2A6rzmOVoA/UdJXO9uh4lI/AAAAAAAAALk/0fs9gxYqvlc/s1600/Carulmare_Have_a_Seat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="333" src="http://3.bp.blogspot.com/-W2A6rzmOVoA/UdJXO9uh4lI/AAAAAAAAALk/0fs9gxYqvlc/s400/Carulmare_Have_a_Seat.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">She rummaged around her paint shelf for the stain she'd used so inexpertly eight years ago on the garden furniture. Was it still there? She'd recently purged the basement of truckloads of detritus accumulated over the years. Much of it, including many old cans of paint, was recycled at various points around the city. Could she, in a moment of zeal, have tossed that stain too?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span><span class="Apple-style-span" style="font-size: large;">She'd obviously had a moment of clarity when assessing that particular can because there it was, nearly full but badly separated after years of stagnation. She wondered if stain could go bad like mayonnaise but since the furniture was old anyway there was little risk. All it probably needed was a good shake and a stir.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">It was a nice day with little chance of rain, perfect for the task if she could manage to concentrate long enough to accomplish anything. He had been particularly restless lately so there were no guarantees but since it was a long holiday weekend with no respite in sight, she had to find something to do to stay sane. She ushered him outside and settled him into his reclining deck chair, hoping he'd nod off in the sunshine.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The chairs were rough old things acquired for free from neighbours. They had been badly weathered but she had smoothed out the wood and applied a stain to hide the age spots. It was time for a face lift again, a good focus for a quiet, lonely Sunday afternoon.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He remained still for the duration of the sanding but started to stir as she pried open the paint can. She tried to ignore the restless rustling of medication taking effect. Bent over the chair, her back to him, she could envision the facial contortions that were beginning and the glimmer of madness that always accompanies the medications reaching full effect - a most dangerous combination of renewed physical agility and heightened dementia. That surge of energy must be a heady feeling for him after the nearly paralytic bradykinesia of the off times. A sense of superhuman strength, almost. She could see it in his eyes: I can do anything, they said, and she was always there to thwart him or "badger" him. That was the word he'd used the other day as she ran after him when he'd escaped to the road. She had tried to help him walk back when he could only manage half a step at a time before falling on the hard pavement. On that occasion, after the rebuke, she had left him alone and run back to fetch the car but, with her gone, he had miraculously picked himself up and jogged the very short distance home. It was getting difficult to know when to intervene with a man who could swing wildly from belligerent independence to panicky neediness in a matter of seconds.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">He got up from the chair and she brandished her paint brush somewhat wildly, knowing this was now going to be an interrupted job. She considered abandoning the project to follow him but she was still stinging slightly from the accusation of over-attentiveness. He shuffled down the ramp in his slippers. Glancing up, she saw him move down the driveway. She wanted to let him just go, so, with her back still turned, she held her breath, only releasing it when his movement shuddered then pitched him to his knees onto the gravel. Ouch, she winced, but he picked himself up and turned back.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Still painting, now frantically, she listened for his steps back up the ramp but he detoured to the back of the house. Well, at least the grass is a little easier on those poor knees, she thought, but still didn't leave her task. A few more stabs with the paint brush, then she dashed around the back to check on him. Oh %$#&;! Where the hell is he? He couldn't have disappeared that fast. She bolted into the house, yelling his name but there was silence. Back outside she now noticed the upper door to the basement was slightly ajar and there he was trying to pick the locked door at the bottom of the stairs with a small stone.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Determined to complete at least one chair now that she'd started, she left him to his break-in project and raced back around to the front to continue her task for a few more seconds before the next check-in. This time he had made his way back up the six stairs and was now sprawled out on the paving stones picking at the sand between the bricks. She opened her mouth to protest the little piles of sand he was beginning to create but caught her tongue. Another dash back to the painting project. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Next she heard the shed door open. Obviously the brick-picking project had been abandoned but she made a mental note to sweep up any scattered sand later. She once again put down the paint brush to join him in the shed where he had parked himself on the lawn tractor and was fiddling with the knobs and levers. She congratulated herself for hiding the key two summers ago after he had tried to flee on the machine one day, scattering small stones like gunshot towards the house and fragile windows. She believed there was little harm he could cause just fiddling so she bolted back to her paint.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">On second check to the shed, he had now fixated on her bicycle. His was hung up from the rafters but hers had been jammed next to the tractor. She implored him to not take it outside but she knew it was a waste of breath because there was that look in the eyes. Oh well, maybe she could get a few more licks of paint on that chair before he managed to wrestle the wedged-in bike outside. Surely that would prove too difficult for him now. He'd probably fall and really hurt himself this time, she thought guiltily but not enough to intervene.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The next noise she heard was the crunch of gravel underneath the wheels of her bike. As she turned her head to look she saw him straddling the bicycle. GREAT, she muttered bitterly, then decided something very irresponsible: If he wants to ride her bike then she'd jolly well make it easier for him. What kind of lunacy had overtaken her, she didn't know, but she was now feeling about as rebellious as he seemed to be. Knowing her tires were flattened from a winter's inactivity and not wanting them to be damaged, she cheerfully offered to fill them with air for him. She knew that to thwart him would now create a real dust-up, a scene that hadn't been acted out in such a long time, she never imagined he'd rise to it ever again. With a moment of scientific curiosity overcoming her protective instinct, she thought she'd just see how far this might go. She helpfully suggested he stick to cycling around on the grass, but the look he gave her suggested he had already made up his mind.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Another dash up to her paint can, another few licks of paint, then a glance over her shoulder again. He was gone. Of course he was. Why did she even think there was a chance he wouldn't go?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">More vulgar expletives under her breath. She ran inside to grab the car keys, thinking he might have gone towards the highway, God forbid, but then she heard the distant bark of a small dog down the end of her road. She'd drive down there first because the thought of him wobbling out onto the highway was too unbearable. Besides he could have gone in one of three different directions by now. She knew how fast he could travel if he really put his mind to it. And - relief washing away her petulance - there he was, nearly at the end of their small road, stopped as normally and casually as anyone out for an afternoon bike ride who had run into a neighbour. Well, not literally run into her, though that was a distinct possibility for him. No, he was chatting to a young friend out walking her yappy dog and looking as though she wanted to flee as far away as she could get from this crazy man on a bicycle. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">It took a great deal of effort to not shout at him to go home but instead she rolled down her window and chatted amiably to the young friend, congratulating her on her recent university graduation. Then as the young woman made her excuses and nearly ran back to her house, he mounted his bicycle, ignored his wife and cycled off back toward their home. She rode on ahead and turned back into the driveway, not even certain he would follow her but she didn't look back to check on him. She simply returned to her project, like a moth to the flame. He rolled up the driveway a few seconds later, parked the bicycle half in the shed, then shuffled back up the stairs to join her on the deck. He nearly fell into his chair, collapsing from the exertion and the waning of the medications. She barely spoke or acknowledged him, pretending it was the most normal thing in the world for him to set off on a little ride all by himself. She calmly painted the last few strokes, then sighed mightily to see the job completed. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span><span class="Apple-style-span" style="font-size: large;">Her eyes scanned the deck, taking in the rest of the shabby furniture. Only six more pieces to paint.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
*Carulmare, Have a Seat, 2010.<br />
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Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-76485580137899648822013-06-23T17:31:00.000-07:002013-06-24T07:55:38.256-07:00Thank you, Herr Beethoven<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-HV-eG2nlS2o/Uccgzcl8vlI/AAAAAAAAALU/6oCPypc_nS8/s1600/Beethoven.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-HV-eG2nlS2o/Uccgzcl8vlI/AAAAAAAAALU/6oCPypc_nS8/s400/Beethoven.jpg" width="332" /></a></div>
<span class="Apple-style-span" style="font-size: large;">The effects of music on a Parkinson's patient have long been known but hardly understood. Many are the stories of severely disabled people suddenly dancing fluidly when they can barely walk. Music has been known to unlock the minds of stroke victims, indeed the sufferers of all kinds of ailments. Music reaches inside us, lifts us up, evokes strong emotions and reactions we might not have been feeling before that moment of hearing a certain tune. Memory too is closely linked to music. How many times have we heard a song that hurls us right back to the time we first heard it or experienced something significant?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">When I am frustrated and in need of escape but cannot leave the house, I simply pull out my ipod, plug myself into my earbuds and jack up the music. Usually it is loud, testosterone-driven music that I favour when I am in this mood. I sing and dance all by myself. If truth be known, it is the only time I dance with abandon. I am otherwise shy and would never do so in public except, in my distant past, when I was under the influence of intoxicants, long since abandoned. Lately I have latched on to a newly discovered (for me) group called the Headstones, appropriate given the topic of my last post ("Good Grief"). Their music thrills me with the high I need.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Dinner time has been very frustrating these days. It is the one meal everyday when we sit down together. The other meals I eat well ahead of Michael as my day usually starts much earlier than his but I do try to make of point of breaking bread together at least once a day. It is a meal I do not really enjoy: it is deathly quiet unless there is choking or other drama to deal with which only leaves me wishing I'd eaten alone and uninterrupted. To ease the loneliness - always more pronounced than when I eat on my own - I usually immerse myself in a puzzle, a newspaper article or the computer. It is a frantic activity, not calming, as I try to concentrate in an impossible environment for such endeavours, my body poised to jump for any new calamity. The problem with this strategy too is that Michael likes to mimic this behaviour so he spreads out a page of the paper in front of him then stares at it. I know he isn't reading anything - his eyes never move - but he can become so fixated he will not eat. Or he tries to shuffle the pages which end up on the floor or in his food and generally a big mess. Then the preoccupation becomes the retrieval of all the paper and an inevitable slump to the floor. Of course, all of this could just be a clever ploy to avoid eating whatever distasteful food I've served for his dinner.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span><span class="Apple-style-span" style="font-size: large;">With all that in mind, I have decided that a change is required - for both of us. The past two nights I have laid the table as usual with the cloth napkins, even flowers from the garden. Last night I rustled up a what's-left-in-the-fridge quiche which was a reasonable success for Michael. We clinked our glasses -water and apple juice - and made an event of it, reminiscent of the many fine meals we ate together in the past.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">But the major change was ridding the table of the distracting newspaper and keeping the computer firmly shut. To ease the quiet and the loneliness I put on a classical cd from our collection. I've tried more modern music at mealtime but it only unsettles me and feeds my restlessness. Last night it was a Beethoven compilation I haven't listened to in years. The night before, Vivaldi. The effect for me was an instant relaxation of my usual mealtime jitters. I found myself eating more slowly and listening intently to the piano trills or the violin crescendos, anticipating the notes that used to be so familiar to me. It was Michael's reaction, however, that captivated me. He has never really been a fan of classical music so it was fascinating to observe that, not only did he eat with more focus and fluidity, but at one point I looked up and saw him conducting with his fork, obviously enjoying the music.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I've dug out all our classical cds and will play a new one each night that we eat without company. Tomorrow night Mr. Smetana will pay us a visit. Why didn't I think of this sooner?</span><br />
<br />
.<br />
<span class="Apple-style-span" style="font-size: 32px; font-weight: bold;">“We, verily, have made music as a ladder for your souls…” –Abdu’l-Baha</span><br />
<span class="Apple-style-span" style="font-size: 32px; font-weight: bold;"><br /></span>
*Portrait of Ludvig van Beethoven, Joseph Karl Stieler, 1819 or 1820<br />
<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com1tag:blogger.com,1999:blog-7017747305441637425.post-30332972590898622772013-06-22T07:01:00.002-07:002013-07-03T14:40:26.965-07:00Good Grief<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-IWTxAeUpxz8/UcWqmPXmDZI/AAAAAAAAALE/B-eyYwP7dHk/s1600/Crying_Stone_Luba_Zukowa_Poznan.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="398" src="http://1.bp.blogspot.com/-IWTxAeUpxz8/UcWqmPXmDZI/AAAAAAAAALE/B-eyYwP7dHk/s400/Crying_Stone_Luba_Zukowa_Poznan.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">Every morning she looks down upon his sleeping face and wonders what the day will bring. Will calmness prevail? Will he develop some odd notion that must be relentlessly pursued without really knowing what it is, while she hovers over him trying to decipher the puzzle, trying to keep him from harm, trying to divert him if necessary? Will he exhibit a new and frightening symptom leaving her to guess whether medical assistance is required, whether to rush into action? Will the fact that she cannot waken him from a troubling slumber and erratic breathing mean something more than just another oddity of his disease?</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">These are concerns that sit upon her shoulders every moment of her day. There is little escape except for the few hours a week that she can leave him in the care of another. But even that means being tied to the cell phone just in case, being poised at all times to rush home.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">She has hardened herself to the cruelty of the endless grief. The rare moments of clarity where he displays his old humour or an awareness of his reality can be a delight but always leave her scarred with another deep gash of sadness as she is reminded of the man she has lost. The grief ebbs and flows, now usually without tears, just a dull ache that grips the heart. To be otherwise would be impossible to bear and would render anyone incapable of functioning. The cleansing outpouring that accompanies a true death cannot be allowed to prevail. This death goes on and on and on. She has suffered the loss of her husband but cannot wear the widow's weeds.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The funeral of a friend's father summoned her. Because of her restrictions she could not attend the event but could at least pass by and express her condolences, hug this friend and and her family. She stood for a moment, hand on the casket, and uttered a brief prayer for the man whose life she hardly knew. It was a simple unspecific prayer, one to accompany him on his new journey. She felt dry-eyed.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">As it happened, her own parents were buried nearby so she slipped away before the ceremony to pay them a brief visit before rushing back to her home of the living dead. Their grave was a mere pathway away, through a serene garden of lush plants. Gardeners mowed and trimmed away as she rushed past them. She felt a sudden urgency and nearly ran the few meters to the grave. The tears began and by the time she had reached the spot, the sobs were wracking her frame and forced her to her knees. The outpouring lasted only a few seconds.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">She stood and walked slowly and now calmly back to her car, the ache relieved for the time being.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"><br /></span>
* Crying Stone, Luba Zukowa in Poznan, Park Cytadela.Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com3tag:blogger.com,1999:blog-7017747305441637425.post-48625261597595645072013-06-07T19:14:00.000-07:002014-01-14T05:20:21.534-08:00Home<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-VA-rQ9A0xQU/UbKHcA3h_RI/AAAAAAAAAK0/wBJNWiqhmIk/s1600/The_babe_in_the_womb;_Leonardo_da_Vinci_(1511).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://1.bp.blogspot.com/-VA-rQ9A0xQU/UbKHcA3h_RI/AAAAAAAAAK0/wBJNWiqhmIk/s640/The_babe_in_the_womb;_Leonardo_da_Vinci_(1511).jpg" width="458" /></a></div>
<span class="Apple-style-span" style="font-size: large;">You sat with your head thrown back, wheezing, snoring, mouth and eyes wide open. I had assumed my usual prone position on the couch next to you, my legs thrown over your lap. Your warm hand rested on my belly, twitching occasionally in your half sleep. A Neil Young documentary shrilled in the background on this cold, rainy June afternoon. I wanted to turn him off; the sound was grating to my ears but you had obviously been enjoying the music before you fell into your semi-conscious state. It used to be frightening to witness these episodes of withdrawal of consciousness but I am used to them now.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I covered your hand with my own and ran my fingers up and down yours. It is one part of your body that hasn't changed in all the years I've known you, unlike my own hands which have swelled, bent and stiffened with arthritis. Ugly hands. Yours remain strong despite the weaknesses elsewhere in your body. I can still count on you to open a stubborn jar when my hands just refuse to work.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">My wandering fingers stopped at your ring finger. Mysteriously your wedding band has been replaced with an ancient high school ring, a big heavy thing that looks as though it could do serious damage to someone's face if you wanted to. I sat up to inspect your right hand. There was the gold band along with your iron engineering ring presented to you upon graduation so many years ago. Was there any reason for the switch, I wondered? No point trying to overthink this, my quick conclusion.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">These rings represent significant events in your life: your happy high school experience in the United States, stationed in Norfolk, Virginia where fine friends were made and are still present in your life, albeit remotely; your struggle through university and finally getting that coveted degree, a goal that had been more your parents' than your own; marriage and children - I hope a happy fulfilling experience for you if somewhat stressful and busy with four boisterous children. Of our thirty-four years together you have been sick now for over twenty. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">You have slipped into the distant past, your memories of those times still sharp and clear when you can articulate them. Your present is a return to childlike things, your needs must be guessed and intuited. Your relationship to me is like that of an infant to his mother, your need for me to be near growing day by day.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">This week you were twice troubled and confused by my absence. Could it be the massive changes I have brought about in our basement, converting a grey, dingy space into a miraculous realm of light, order and joy? My heart leaps with happiness whenever I descend the stairs but for you it is all confusion. Your work bench is gone. The clutter has been swept away. Your unused sports gear has been greatly reduced. My way of creating change when static life is our reality.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">You wandered downstairs one day by yourself while I was out, leaving your caregiver upstairs. The workmen, my friends, reported that you mumbled you needed to go home. You needed me. I was out for a couple of hours but you had forgotten. You had also forgotten about your home - our home - a place of safety and calm for you. Your behaviour reminded me of your singular goal of returning home, of finding me whenever you were hospitalized, in a foreign environment. When thwarted you would become violent, prompting staff always to summon me to bring calm.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Another day I came home to an empty house, a rare treat. Two sets of shoes were gone so I assumed you were both out in the yard. Confident you were safe, I busied myself in the basement arranging things in the new spaces. Half an hour later you returned. You had apparently bolted down the road to a neighbour's house then to another in search of me, F. valiantly following you wherever you wanted to go. She reported that you were remarkably focused and stable, hardly falling until you reached home and saw that I had returned. Your occasional sparks of grit and determination are awe-inspiring, a mystery.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I feel as though an umbilical cord now joins us. It seems as though our house no longer fully provides you with the safety and security you so desperately need. I am becoming your only home.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
*The Babe in the Womb, Leonardo da Vinci, 1511Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-8557092452149907972013-05-20T16:15:00.000-07:002013-07-03T14:45:00.155-07:00Dear Emmett<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-DNboChCwGL0/UZqZAdwJPcI/AAAAAAAAAKk/WoiTuwlzJds/s1600/Janis_Rozenta%CC%84ls_-_Mother_and_Child_-_Google_Art_Project.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://2.bp.blogspot.com/-DNboChCwGL0/UZqZAdwJPcI/AAAAAAAAAKk/WoiTuwlzJds/s400/Janis_Rozenta%CC%84ls_-_Mother_and_Child_-_Google_Art_Project.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">Dear Emmett,</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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 has dulled.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<br />
*Janis Rozentals, "Mother and Child" 1904Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-30404424182686385162013-05-13T14:01:00.000-07:002013-05-13T15:34:26.527-07:00Sweet Relief<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-eUiv1gvjxEs/UZFLXmePZrI/AAAAAAAAAKU/RdXkrHSW4QI/s1600/The+Mad+Hatter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="312" src="http://1.bp.blogspot.com/-eUiv1gvjxEs/UZFLXmePZrI/AAAAAAAAAKU/RdXkrHSW4QI/s400/The+Mad+Hatter.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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...</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Aaaaaah, sweet relief.</span><br />
<br />
<br />
*John Tenniel's illustration from Lewis Carroll's "Alice's Adventures in Wonderland", 1865.<br />
<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-57687657087618518522013-04-30T22:14:00.000-07:002013-05-03T04:47:49.940-07:00Resentment<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-GUdRAC-sNh4/UYChvPZbNbI/AAAAAAAAAKE/eiZsaCYZ_N0/s1600/Opened_up_a_Pandora's_box.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://3.bp.blogspot.com/-GUdRAC-sNh4/UYChvPZbNbI/AAAAAAAAAKE/eiZsaCYZ_N0/s640/Opened_up_a_Pandora's_box.jpg" width="378" /></a></div>
<span class="Apple-style-span" style="font-size: large;">Overwhelming sleepiness prompted me to indulge in a rare after-dinner cup of tea to get me through the evening. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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</span><span class="Apple-style-span" style="font-size: large;"> </span><span class="Apple-style-span" style="font-size: large;">backwards in my notebook, not long after my sister died on April 19, 2011:</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<b><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif; font-size: large;"><i>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></span></b><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i>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.</i></span></b></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i>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 (</i>blogpost "Journeys", March 1, 2011<i>) 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 (</i>blogpost "The Long Dead-End Road to Surgery", June 4, 2011<i>) 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></span></b></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i>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. </i></span></b></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i>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.</i></span></b></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i>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.</i></span></b></span><br />
<b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b><span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></b>
<b>*</b><b> F.S. Church,</b><b>"Opened up a Pandora's Box", 19th century</b>Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-57258275807875039842013-04-17T20:13:00.000-07:002013-04-18T04:38:17.361-07:00A Sticky Interlude<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-3S3PcMc8aIc/UW9glpIV0WI/AAAAAAAAAJY/CpOEEwAkczo/s1600/12_beignes_Tim_Hortons.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://4.bp.blogspot.com/-3S3PcMc8aIc/UW9glpIV0WI/AAAAAAAAAJY/CpOEEwAkczo/s400/12_beignes_Tim_Hortons.jpg" width="400" /></a></div>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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. </span>Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com2tag:blogger.com,1999:blog-7017747305441637425.post-68907869853876033692013-04-09T19:09:00.000-07:002013-04-10T13:51:51.779-07:00The Other Side of the Mirror<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-mF4gGjzQhS8/UWTGf1_lnhI/AAAAAAAAAJI/2-Sc6MeSIrw/s1600/Alice_through_the_looking_glass.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://3.bp.blogspot.com/-mF4gGjzQhS8/UWTGf1_lnhI/AAAAAAAAAJI/2-Sc6MeSIrw/s640/Alice_through_the_looking_glass.jpg" width="539" /></a></div>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I can't do it; my high speed conclusion.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">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. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">No, I'm not ready.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
*John Tenniel's illustration from Lewis Carroll's <span class="Apple-style-span" style="font-family: sans-serif; font-size: 13px; line-height: 19px;"><i><b>Through the Looking-Glass, and What Alice Found There</b></i></span><span class="Apple-style-span" style="font-family: sans-serif; font-size: 13px; line-height: 19px;"> (1871).</span><br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/08423524246507469590noreply@blogger.com1