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Friday, November 15, 2013

Feet on the Ground

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.

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.

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.

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.

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.

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.

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.

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.

Photo by Claire Verney, November, 2013.

Sunday, September 29, 2013

Flying Solo

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

Photograph of Claire Verney, taken by Anna Torontow in Thunder Bay, Ontario, September, 2013.

Sunday, August 25, 2013


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. 

But the children had vetoed that idea. "People will want to pay tribute, Mom. We'll get through it together."

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.

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.

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.

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.

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. 

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:

This has been a long road, folks, and here we are today to say goodbye to Michael. Thank you for joining us.

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.

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.

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  you, my dear. May we now continue a friendship born out of this partnership.

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 50th Jubilee medal for dedicated service to his country.

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.

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.  

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 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.  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?”

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.”  Oh.

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.”

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  Dad breaking into Arlo Guthrie’s “I don’t wanna pickle, I just wanna ride in my motorsickle.”

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.  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.

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.  It was one of the most joyous moments of our time together.

I will sorely miss my husband and best friend of 34 years.  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.

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.

Please join us as we sing the prayer that meant so much to him and helped him through some very dark times.

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. 

*Photo of Michael Torontow taken by Claire Verney, circa 1981

Monday, August 19, 2013

The Other Shore

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.

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.

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. 

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.

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.

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.

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.

Tuesday, August 13, 2013

Michael David Torontow

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.

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  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.

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.

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 .

Sunday, August 11, 2013

Bedside Musings Part 2

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. 

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. 

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.

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.

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.

His life hangs by a sigh.

Monday, August 5, 2013

Sacred Rituals

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?

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.

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.

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.

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.

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.

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.

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.

*Sainte-Chapelle in Paris: Rose window

Wednesday, July 31, 2013

Bedside Musings

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.

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.

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. 

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.

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.

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.

Glass panel: The Four Seasons (1978), Leonard French, La Trobe University Sculpture Park, Melbourne, Australia.

Monday, July 29, 2013

I'm Sorry

I am sorry if I have failed you in any way.

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.

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.

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.

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.

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. 

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.

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.

*Saints Kings Church, Venustiano Carranza, Mexico: Stained glass windows Sun, Alpha Omega

Monday, July 22, 2013

The Phoenix

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.

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.

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. 

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.

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.

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?

Phoenix tombstone, Fyvie Kirkyard Scottish gravestone, 18th or 19th century.

Friday, July 19, 2013

Silver Linings

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.

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.

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.

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.

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.

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.

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.

* Photograph by Claire Verney of (L-R) Anna Torontow, Michael Torontow, Emmett Seed and Laura Torontow.