Phil Dwyer's Blog: Things That Fascinate Me, page 4
January 27, 2016
Grieving in Colour — Part III
January 26, 2016
Grieving In Colour — Part II
January 25, 2016
Grieving In Colour — Part I
Grieving In Colour
January 19, 2016
Just Breathe
January 13, 2016
Letting Go
December 11, 2015
Misty’s Journey: A Therapy Dog’s Journey To The Heart of Palliative Care
We take a break short diversion in our series on “How We Die” this week to consider another aspect of palliative care: the work done by Therapy Dogs. Guest author Fran Carnerie writes from the heart about a handful of patients whose lives were touched, and their dying eased, by her dog Misty. Please note to protect patient privacy, the names of the patients have all been changed.
by Fran Carnerie
On October 6, 2003, an Angel was born in a little village on the west coast of Prince Edward Island. She had a beautiful face, an intelligent look … and four paws. Nine months later, when a family from Whitby visited the seaside, the Angel insisted on joining them. Forever. The family called the Angel “Misty” to remind them of the ocean where she was born.
***
From her first day with our family, anyone who came near Misty was met with a wagging tail, Happy Girl face and plenty of kisses — her way of saying she was here to love. Just love. In the next few years, my little Golden Retriever and I partnered through three levels of obedience training and four levels of agility classes — but then came the day she was ready to begin her true life’s work: Misty was evaluated for her fitness as a Therapy Dog with Therapeutic Paws of Canada (TPOC). She easily passed the tests, then the supervised hospital visits and was rewarded with a monogramed red vest to identify her as a certified Therapy Dog when she was on duty. Since I’d had previous work experience with cancer patients, I asked that Misty and I be assigned to palliative care. We were posted to the Supportive Care Unit in Lakeridge Health Oshawa where Misty visited all people: patients who were alert, or those making ready to leave this life. Nurses. Family members. Cleaning staff. Physicians. People who passed in the hall. Anyone needing a listen and a hug. What follows are some life incidents Misty and I shared with fellow travellers on the unit.
***
Albert
“Don’t leave yet.” Albert’s voice came in wisps. His oxygen cannula had fallen slightly more out of one nostril than the other, its dehydrating flow causing his voice to drain away. The inflated neck support had tipped and was at risk of sliding out from under his head. Glasses sat crookedly across his face. All in all, Albert seemed “off kilter”. Still, he managed to stroke his Pet Therapist determinedly — perhaps she was a mooring for him. “Please … don’t leave yet.”
Misty quickly developed a wonderful Therapy Dog skill — on my cue (patting the bed beside the person lying there), she alley-ooped her front end up, so she could tuck in and snuggle the patient while her rear paws remained on the floor. As he patted Misty, I asked Albert if he had a dog at home. He shifted around the styrofoam glasses and can of Ensure on his bedside table, then shook his head.
“My wife never liked animals.” His wife occupied the other bed in that semi-private room. She, too, was perishing from cancer. “When I go home, I’m going to get a dog … but please, don’t leave yet.” Misty and I remained with Albert for some time after which I reluctantly said, “I’m sorry, we have to see other people now, but I’ll bring Misty back same time next week.” Of course, many times people we saw one week were no longer there when we returned, but I said the same thing to everyone. Always.
“I understand,” he said. We left.
Albert was there the next week when Misty and I returned, but the bed beside him was empty. He stared vacantly at the ceiling, with breathing that was rapid and laboured. Lips thin and purplish. I asked if he wanted a visit with the Therapy Dog, but he shook his head, “no”. Gaze remained on the ceiling.
“Really? No? You don’t want to visit with Misty?”
Instantly, Albert lowered his gaze and searched for Misty. His eyes focused. He became alert. “Oh! Yes. Yes! Come here, come here!” He reached out and Misty licked his arm through the bedrails. “She’s staying with me for the night. You’re just going to leave her here.”
I gave Albert dog treats, which he fed Misty awkwardly, through the bedrails. With enormous strain, he pulled himself onto his side so he could lay as close as possible to Misty, while she nuzzled under his arm. That’s when I heard it: not so much a moan; not loud enough to be wailing; more like weeping but without tears. A sound far distant. Remote. Ancient. Was it fear? A quest? Or the shared beating of hearts that has passed between species from the time early human and wolfish ancestors huddled together in darkness. At The Precipice. It was here. Now. I backed away, giving man and dog their space and privacy. Leaving Misty to care for this soul. After a time, Misty backed away from the bed — she’d done all she could for the day.
“See you next week, Albert.”
One week later, Misty and I entered Albert’s room. The oxygen cannula was off his face, lying loosely on his chest. The man who was so anguished during our visit in the previous week now had hooded, unfocussed eyes. He was short of breath, clearly needing the oxygen. A nurse came into the cubicle, attracted initially by Misty. She restored the oxygen delivery then left so she wouldn’t deter Misty from her primary focus: the man struggling for breath. I leaned over to Albert and said, “Misty is back to see you. Do you remember Misty the Therapy Dog?”
Misty pushed her nose into his bluish hand. For a moment, his eyes opened slightly wider and he whispered, “Oh, Misty… Misty… Misty… Misty… Misty…” He slowly moved his head back and forth and for a few moments attempted to pull himself onto his side as he had done in the previous week. Then Albert resigned, letting his body go slack. His eyes closed. Too much exertion now. Too much.
Curiously, Misty backed away. Why was she doing that? What was she sensing? What was she understanding that I did not understand? And so it was in this tender yet profound place. Albert was retreating to somewhere more internal. I cupped my hands around his cool fingers and paused for a few moments to wish him a peaceful journey.
The next week Misty and I were passing by Albert’s room — not steering into it, when Misty paused in the doorway and looked in. I wondered whether anything of the person, any clue, scent, affected cell, any fragment that witnessed the person’s struggle — or passing — remained within those walls. The furniture. The blankets that rose and fell with each laboured respiration. How absent is absence really?
***
Misty and I went to the bedside of a woman who had requested a visit from the Therapy Dog. “Hi. Did you want to see the Therapy Dog?”
“WHAT?”
I raised my voice a little, trying to aim the loudness into her ear. “DID YOU WANT TO SEE THE THERAPY DOG?”
“OH! YES! IS THAT THE DOG?”
“YES. HER NAME IS MISTY.”
“SHE’S PRETTY.”
I nodded.
“OKAY. I’VE SEEN HER. THANKS VERY MUCH.”
***
Laura
An attractive woman sat up on the side of the next bed — Laura was happily excited. Her daughter was getting married the next day at the park beside the hospital — the wedding had been moved up significantly so Laura could attend. She was running through her Mother-of-the-Bride anxieties: will my hair, my dress be okay?
“You could show up in a bathrobe and nobody would care because it’s you they want to see.”
Laura considered this and smiled. “This is my first one to get married.”
The next day, when the weather was gloriously sunny, I thought often of Laura, picturing her natural beauty amid the blooms and fragrances of the community garden. A day for giving thanks.
A week later, Misty and I were back on the unit and looking for Laura. As we approached her room, I saw a sign taped beside the door. It read, “This is Laura’s Room”. Apparently, Laura now needed some help finding “home”. Since the door was pulled almost closed I was concerned that Laura’s condition had plummeted from last week. Well. Concern was not required. Not at all. After knocking on the door, Misty and I entered to find Laura dressed in funky street clothes, certainly not PJs. She sat on the side of the bed, chatting animatedly with her visitors … until she saw Misty. “Oh! Look who’s here!” Misty pranced in and set about licking and wagging and generally adding her own brand of medicine to the medicine of Laura’s visitors. Laura was vibrant and beautiful. Then she announced to her guests, “I’ve known this dog since she was a puppy.” Nobody skipped a beat. The chattering and laughter continued. The talk turned to dogs and Laura never had her hands off Misty. Misty never ceased her happy whimpering and wagging — especially since she was being stuffed with dog treats.
A week later, no sooner had we stepped onto the unit when Misty saw Laura and pulled me in her direction. Laura was in an unfamiliar new pose — sitting in a wheelchair. Clearly, a lot had happened since we’d last visited. Still, Laura needed no prompting about what to do with Misty. “Well hello, Beautiful!” Laura started sitting up straighter but couldn’t seem to respond with her arms. One hand had curled into itself, the other trembled. Misty knew what the circumstances required: she wagged her tail and licked up Laura’s arms. Both seemed delighted.
Before we returned in the week following, Laura, who’d needed a sign on her door to locate her room, did indeed find her way home.
***
As we emerged from the rotating doors at the hospital entrance, one after another, people about to leave the building changed course, veering over to Misty, drawn as though by some irresistible force, arms outstretched to trail fingers through her fur as they walked past . “What a beautiful dog!” “Can I pat your dog?” “Is this a Therapy Dog?” The unwavering bond of dog and human in this most profound place of birthing, healing, failing, dying, of misery and mystery, was unmistakable. Remarkable. A gift of our shared evolution. Misty gently wagged her tail and offered licks to all who paused to touch her, stroke her, run their hands over her coat, those who looked into her smiling face.
***
Marie and Marietta
“No dog! No! No!”
Wife looked at me apologetically as Misty and I backed out into the hall. She followed us out and said, “I don’t understand it. He loves dogs. When he got home after having his surgery, he saw our dog and burst into tears. He was so glad to see her — but, that’s just the way it is with brain involvement, I guess.” She bent over to pat Misty’s head. “You’re so beautiful.”
I asked Wife how she was doing while Misty picked up her cue and cuddled into the woman’s legs.
“You know, it’s strange.” She pointed into the room beside us, Misty’s tail wagging slightly. “Our lives are so similar. We live a few blocks from each other. My name is Marie. Her name is Marietta. We have three boys from six to nine years. They have three boys, the same ages. I’m forty. Marietta’s forty. And our husbands are here. How can that be? How can our lives be so similar… really similar, but we don’t meet until our husbands come to this floor at the same time?” She shook her head, ruffled Misty’s neck and walked back to her husband.
A woman came out of the next room and spoke softly into her cell phone. “Look, all I’m saying is if you want to see him you’d better get down here now.”
***
Larry and the new guy
Misty and I looked into the next room. It was very dark inside, with the curtain drawn between the beds. A newly admitted man was in the first cubicle, head in hands while his wife rubbed his back. I knocked quietly on the door and Misty stepped in. They both looked so preoccupied that I offered, “We’re just here to see Larry in the next bed.”
The woman spoke up. “He’s just … he’s deceased … just now …” Her husband shook his head, running his hand through his hair. And so it happens here. As Misty and I were coming up to the floor, a human being was breathing for the final time. His heart was slowing to a stop while two people down the hall reminisced about maritime geography. A woman in another room was turning down an offer of milk because her accelerating exhaustion made sitting up to drink from a glass too difficult. As Larry’s brainstem began to shut down, a man in the next room was celebrating his victory for the day: the blood clot that had kept him bedridden the past week was resolving and once again he could sit up in a chair. Opposite him, an empty bed that was occupied in the week previous. A woman across the hall was turning down an injection — her pain was manageable for the time being, thank you. And in the next bed, a man new to the floor, watched.
***
The woman in bed looked up at me. She had a feeding tube inserted into her nostril.
“They’re poisoning me! It’s rat poison!”
I wondered whether there was this much mental confusion among the patients during the daylight hours … or did the fog swirl about more brazenly in the evening, when shadows crept in from the corners?
***
Bette
Bette was in bed. Uh-oh. Usually she was in a wheelchair “walking” the wheelchair up and down the hall. I never saw her without a smile on her face, including that night. Ever the gentle clown, Bette would pat her bald head as though brushing back luxurious curls, and tell Misty and I how she had to beat back the paparazzi who never gave her peace.
“Misty, where have you been?” Bette took great care to stroke Misty’s face and ears. “I’ve been waiting and waiting for you to show up! Ooooo and I smell your chicken toothpaste! Mmmmmmmm.”
The adoration was mutual. Misty was generous in her smooches planted up and down Bette’s arms and face.
“Wait, Misty…” Bette turned her face to make it easier for Misty to cover the other side of her face with kisses. “You forgot this side.”
Smooch. Smooch. Lick. Lick. Yep. The adoration was quite, quite mutual.
On this evening, Bette was in bed with oxygen flowing through a cannula into her nostrils. She was very pale. Scary pale. But still up for shtick, as we were to discover.
“Bette, do you feel like having a visit with Misty?”
“Oh yes…” she puffed. “Always … I’ve been waiting.”
I pressed the button to elevate the head of the bed. “How are you tonight?”
“Oh, I’ve just got a cold, dear. Don’t worry about me.”
This was more than a cold, of that, I was certain. I wondered if Bette realized that, as well…
“Misty, Misty, Misty…” Bette stroked Misty’s face and spoke with a reedy, breathy voice. “Didn’t your Mummy bring any treats tonight?”
“Of course!” On cue, I passed four or five little carroty dog bits into those white-blue hands.
“Here, Girl. One for you…” she placed a treat in Misty’s eager mouth. “And… one for me.” With surprising swiftness, shocking even, Bette flicked a dog treat into her cracked, dry mouth and laughed.
I think my mouth dropped.
A nurse appeared beside me. “Did… did she… ”
I nodded mutely. Bette did her best to crunch the desiccated treat, but she and Misty were smiling.
We spent a long time with Bette that evening … the longest time we had ever spent visiting her. Bette just kept stroking and patting and loving Misty and Misty stayed half on the bed, the two of them sharing carrot breath and The Joke. When finally Bette was fatigued, she bid Misty and I goodnight.
As we left the room, I turned and waved to Bette, wondering if Misty and I would see her again. The next week I learned we would not see Bette again in this life.
***
Carey
It was an unusual note. I was asked to be very quiet, to move slowly and explain everything Misty and I would be doing with a new patient in the private room. Oh yes, and be prepared to leave quickly.
Misty and I stood outside a closed door. The woman who was the subject of the mysterious note was in this room. I used the pads of my fingers on the door to signal our arrival, more patting the door than knocking, like Dylan Thomas’ line in Under Milk Wood, “a mouse with gloves”.
Ever so slowly, I eased the door open and saw a beautiful young woman in the bed. Her husband walked around the bed to greet us, so I whispered, “You wanted a visit with Misty?”
As Therapy Dog Handlers, we are given only enough information about patients to help us understand how to approach the person, for example: “hears better from left ear”, “pain in both legs”, “confused”, “daughter afraid of dogs so knock before entering”. With Carey, the information provided was “startles easily.” She breathed through a tracheostomy tube, evident at the base of her neck. Her pupils were of unequal size and so large they swallowed her irises. Carey’s eyes were opened so widely she had the appearance of alarm. Both her arms were in splints to prevent contractures and she appeared to be paralyzed from the neck down. Carey’s husband, David, smiled, even if sadly, as he stroked long blonde hair back from her forehead.
As David waved us in, Misty walked carefully beside me, clearly taking cues from us that “Hush” was the operative word. Carey was on her side facing us, making small jerky movements. By contrast, I was moving like a tortoise when I bent down and whispered, “My dog is here to see you.”
Carey’s mouth opened. She swallowed repeatedly, lips moving over perfect teeth. I looked to David who explained that Carey was trying to talk. He continued stroking her hair as he spoke.
I asked quietly, “Do you think it would it be okay to uncover her arm so she can touch Misty’s fur?”
“Yeah, let’s try it.”
Speaking softly, I explained, “I’m going to uncover your arm so you can feel my dog.”
Lip smacking and swallowing continued, then Carey’s whole body jerked for an instant. I looked up to David.
“It’s okay, she does that occasionally.” He nodded for me to continue.
Very slowly, I uncovered her arm and Misty put her nose on Carey’s skin and, I guess I should’ve expected it, Misty gave Carey’s arm one lick.
I sucked in my breath, concerned there would be more jerkiness from the woman. The only reaction: “Ahhhh. That was so sweet.” David approved. Carey continued swallowing and lip smacking. I slowly rewrapped her arm and whispered, “See you later.”
A few weeks and few visits with Carey later, Misty and I had come to the hospital on Christmas Day to spread some cheer. As we walked by the food court I heard, “Hey look, it’s Misty!”
David came over, arm around one of their daughters, who appeared to be eleven(ish). “This is the dog who visits Mom upstairs.” He looked at us and said, “Carey’s over here.” David gestured broadly to the eating area where several family members had gathered around the young woman propped in a large chair with a tray across the front. Her tracheostomy was emphasized by the angle at which her head was thrown back. David tenderly stroked his wife’s hair back from her forehead as I’d witnessed on each visit.
I asked Misty to stand up on her rear legs while I positioned her front paws across the tray. As I uncurled Carey’s hand from its grip around a rolled towel, I tried to draw the hand across Misty’s outstretched forepaw — very difficult given the clench of Carey’s spasms.
“Carey, Misty’s here to see you.” David turned to me and said, “It would be good if she could feel the different texture.” I nodded and continued my efforts but the involuntary strength of Carey’s muscles to clamp her arm back to her body meant it didn’t go all that well. Carey responded as she always did: by smacking her lips, opening her mouth slightly as though she was trying to speak. I looked up to David who, unseen to his wife, shrugged. He didn’t know either. Was Carey able to understand our efforts to communicate with her?
“Carey,” I said, “I’m returning Misty’s paws to the ground.” Carey seemed unable to follow visual cues because she continued staring ahead with widely opened eyes. Irrespective of what Carey’s sensory perceptions may have been, she was surrounded by love, concern, warmth, caring … a compassionate energy that cocooned her entirely. As Misty and I moved away, the family gathered to thank us, stroke Misty and liberally shower us with Christmas Spirit.
The week after Christmas Misty and I walked into Carey’s room and I broke into goosebumps. Carey was gone. The nurses reassured me that she had been transferred temporarily to another institution for some rehab. Then, a few months later, just as abruptly, Carey returned.
“Hey! It’s Misty!” David strode up to us smiling hugely. “Look! We’ve got a new way to communicate — flash cards!” Above Carey’s head was a metal rack with plasticized, highly colourful cards, each about two inches square and bearing images. “Honey, Misty’s here. Remember Misty the Therapy Dog?” He walked to the top of Carey’s bed so he stood behind her head, then reached up to the cards and selected two. “This one with the big red ‘X’ on it means ‘No’ and this one with the green flower on it means ‘Yes’. I hold both of them up to her and she moves her right eye to the answer.” He positioned the cards about six inches away from Carey’s face. “Honey, do you want Misty to visit with you tonight?”
Carey’s right eye rotated over to the green flower.
“Well, that looks pretty definite!” He was elated. Months earlier I’d had the feeling that Carey was a prisoner captured by her own body because she seemed alert and aware of what was happening to her. The nurses told me that when her children left, she cried. But now, with two by two cards, the world, external Life, could ask her questions and she could make her will known. A triumph!
I carefully placed Misty’s front paws beside her, noticing that Carey was less twitchy than previously. “Carey, we’re going to move your arm so you can feel Misty’s fur.”
David nodded then gently rotated one of Carey’s splinted arms so the skin exposed between the Velcro straps could be touched by Misty’s fur… And then Misty licked the arm. Carey shivered. David smiled. The visit was over.
***
Misty and I were at the nurses’ station, where she was engulfed in hugs. “No, I saw her first!”
“She obviously likes me better.” Misty licked the nurse’s face. “See, I told you.”
“Hey, Misty, I know where the dog cookies are kept.” A finger placed conspiratorially over lips, long past their glossiness. “Is it okay if I give her a cookie?”
“I think she would insist.”
Misty was happily crunching on the biscuit when a man approached. We had stopped in to see the man’s family a short time earlier but his wife was much too uncomfortable for a visit with the Pet Therapist. He crouched down to stroke Misty’s sweet face while he told us of the cancer’s determined march through his wife’s body. Misty licked his hands. Then he stood up and said, “This is great work that you’re doing.”
I looked at him. “It’s not work.”
***
Epilogue
In March of 2014 Misty was diagnosed with osteosarcoma — the same kind of bone cancer that struck Terry Fox. Like Terry Fox, Misty’s leg (the right rear leg) was amputated, she underwent several courses of chemotherapy, was outfitted with a custom-built wheelchair, called a “dog cart”, and we returned to visiting palliative care patients.
As with Terry Fox, however, the cancer recurred in her lung. On May 29, 2015, the day Misty went into the next life, she was in terrible pain but still greeted her veterinary specialists with happy whimperings, kisses and a wagging tail. Our Angel was a Therapy Dog to the end of her days.
About the author
A life-long owner and respecter of dogs, Fran Carnerie, has marvelled at the gifts and compassion animals bring to help humans. In her previous career as a nurse practitioner, Fran worked with cancer patients, so a palliative care unit was the obvious place to visit with Misty, her certified Therapy Dog. Fran also has a thoroughbred mare who provides equine therapy to children and adults at a local Therapeutic Riding Facility. If you are interested in reading more about Misty’s work with people on a palliative care unit, and the work of therapy dogs generally, see their blog: www.mistysjourney.org.
November 25, 2015
A daughter’s story
In this, the third article in our series by guest authors on “How We Die”, Barbara Nutley Hunter recounts the death of her mother. She raises a question which Larry Librach and I discussed at length during his final illness, an issue that’s going to loom large in Canada in the next few months: physician assisted death. Whether you are for or against it (or on the fence) you should read Barbara’s story. It is stories like these that will illuminate the debate and shed a poignant human light upon the topic.
by Barbara Nutley Hunter
I went to see my mother two days before she died. The nurse on duty took a break while I sat beside Mom. I wiped her brow with a cool cloth. I told her I loved her. When the nurse returned I sat across the room for about an hour. The young nurse asked me a question.
“Everyone here loves your mother so much. They say she’s so special. Why do they feel that way?”
I told her that Mom was, indeed, a very special woman. A people person. She had made friends with her caregivers the way she made friends all her life. She asked them about their lives, showed an interest in every detail of one woman’s wedding plan and gave them her special “waggle wave” when they went off shift – her signal to drive carefully and take care of themselves. In return they brushed and braided her hair, brought her favorite treats and made sure new staff knew she was to be treated with gentle kindness. She was raised in a small town by parents who believed community service and caring for your neighbour were important. She was a volunteer and a neighbour and a caregiver extraordinaire.
In June of 2013, I got a call at work from one of Mom’s home helpers. She was still living in the house my parents purchased in 1962 and living mostly independently. She had help with shopping and other errands and had given up her car in favour of taxis but she did most of her own cooking and dressed and bathed without assistance. For an 88-year-old who had lost her husband of 61 years 14 months earlier she was doing well.
“Your mother has been vomiting all morning and she’d like you to come. I can stay with her until you get here.”
Mom hated vomiting more than any other type of illness and did it rarely so I knew something serious was going on. An hour-and-a-half later I had made the trip from Cobourg to Toronto. It was about three in the afternoon.
One of my first questions was about pain. Yes, she was in pain. How much on a scale of 1 to 10? Eleven!
One of my first questions was about pain. Yes, she was in pain. How much on a scale of 1 to 10? Eleven! We called 911. The paramedics were great, as always, and the hospital staff worked quickly to alleviate Mom’s pain and order appropriate tests. Later that evening in the E.R. Mom suffered some kind of “event” that caused her blood pressure to drop rapidly. Her speaking became gibberish and when I summoned the medical staff they were very concerned. When she recovered and regained her ability to speak they sent her for a CT scan. She was transferred to a ward. I called my sister home from a visit to her in-laws.
That day was the beginning of a year-long decline. Morphine was prescribed for the pain. The urine draining into the bag under her bed was brown. She had a bowel obstruction. Or not. The colonoscopy and gastroscopy didn’t support that conclusion. Diverticulitis? Perhaps. She was frustrated and so were we. Doctors came and went and nobody seemed to be talking to anyone. Doctors on the ward had no knowledge of the “event” in the E.R.
After almost six weeks in the hospital including 12 days of morphine, Mom couldn’t get out of bed without two helpers and couldn’t walk. Her 88-year-old muscles had been lying in bed for far too long. She was transferred to a seniors’ rehab facility.
Rehabilitation was not something my mother enjoyed. Getting ready for physiotherapy sessions meant getting dressed and into a wheelchair when the support workers were available to help her. That meant hours of sitting in a wheelchair until she had finished physio for the day and the workers were again available to help her back to bed. Sitting in a wheelchair was excruciating. Her back and neck ached after only a few minutes. She started refusing to get up and ate most meals in bed. Often too nauseated to eat (a symptom that started while she was in the hospital) she lost weight and more muscle tone. A meeting was called. In attendance: Mom, my sister and I, the staff doctor, a social worker, the government eldercare representative, a physiotherapist and the lead nurse.
“Mary needs to put more effort into her recovery.”
True. It was true that the pain and nausea made physio difficult but she could do it. When she wanted to. We were frustrated with her lack of motivation. Every visit we found her in bed. We tried to understand, tried to look at it from her point of view. She was 88, she’d lost her husband, she hadn’t been able to return to her home after being hospitalized, she had lost everything she loved and was comfortable with and she was constantly nauseated and in pain. Who could blame her?
Didn’t she want to see her only grandchild become a successful musician?
On the other hand, didn’t she want to see her only grandchild become a successful musician? Didn’t she want to play bridge with her friends or keep up her e-mail correspondence with a multitude of far-flung friends and relatives? We were angry. Why wasn’t she fighting harder?
In November Mom moved into a beautiful new seniors’ retirement and nursing complex. The first couple of months were better. Still in a wheelchair, she made the effort to be up and dressed so she could be wheeled down to eat in the main floor dining room. She participated in some activities and got to know a few of her new neighbours. Everyone on her floor needed some kind of nursing care but their mobility levels varied greatly and she often stayed on the floor for meals and companionship.
My sister and I arranged to celebrate Christmas in one of the common rooms and made it as close to a “home” Christmas as possible. We brought our own brunch, stockings were hung on the cupboard handles and gifts were opened with laughter and gratitude. We joined her for Christmas dinner in the main dining room. The decorations were stunning and Mom took us on a tour of the main floor common areas pointing out the beautiful trees and arrangements of greenery. It was the year of the ice storm and we pushed her out to the front entry to see the stunning scenery. Every branch glowed in the lamplight and the trees crackled in the wind.
On January 6, 2014, my sister arranged for a wheelchair taxi to take Mom to see her younger brother. Diagnosed with Parkinson’s disease he had recently moved to a public nursing home. Bedridden and too weak to even hold a book or magazine, his life was, in his own words, “somewhere between hell and hell frozen over.” Mom was in tears on the way home. Why didn’t he spend some money and go to a nicer place? Why hadn’t they at least brought some of his furniture and “treasures” from home to make the room nicer?
My sister believes her visit with him was the beginning of the end. She’s probably right. The nausea became much worse and there were fewer and fewer days out of bed. A world-class worrier, Mom fretted that she would run out of money, wondered what we would do with the house and worried about her dear baby brother.
Weeks passed. The house went on the market and was sold quickly. We started the process of packing up a lifetime of memories.
Weeks passed. The house went on the market and was sold quickly. We started the process of packing up a lifetime of memories. Mom would ask us what room we were working on. She knew where everything was and made as many decisions as she could from a distance. She was pleased that the new owners were expecting a baby. A baby in the home where she raised her own babies. The circle of life. The nausea got worse.
By the end of May she was eating very little and her doctor convinced her to go to the local hospital for tests. The non-invasive tests (X-rays, CT scan, MRI) showed nothing. They suggested a repeat of the colonoscopy and gastroscopy. She refused.
“You did all that a year ago and you didn’t find anything. I’m not going through that again.”
My sister called me in tears. They were going to release her having found nothing and if nothing changed she was going to die.
The day after she was released my sister and I arrived on her floor and were greeted by one of her favorite nurses.
“Did you know your mother has agreed to a feeding tube? Dr. T. was here last night and she says they’re going to put the tube in on Monday.”
No. We did not know. Furthermore, based on prior conversations, a feeding tube was the last thing our mother would want. We were confused. An emotional half-hour conversation with Mom took place.
“Mom. Do you remember Dr. T. visiting last night? You talked about a feeding tube?”
“I don’t want a feeding tube.”
“We know that, Mom. Dr. T. seems to think you agreed to have one.”
“No. I would never agree to that.”
And then, several times over the course of the conversation: “You know that if you don’t get a feeding tube and don’t start eating more on your own that you’re going to die.”
“I know. I understand. I don’t want a feeding tube.”
She was lucid, completely in control of her mind and her future. At my mother’s insistence, we brought in one of the nurses and went over it once more with her as witness. The next day Dr. T. went over the whole thing with her one last time and the decision was made. No feeding tube.
While in the hospital Mom had developed a terror of being left alone.
While in the hospital Mom had developed a terror of being left alone. We had hired 24-hour nursing staff and that continued. She had lost all track of time and someone who left the room for five minutes was accused of abandoning her for hours. She was alternately calm – mostly asleep – and panic stricken. The nurses were incredibly gentle as they washed her and changed her diaper but it was an excruciating process. She ate nothing but was terribly thirsty, her mouth constantly dry. Morphine treatment started after about a week. After two weeks she stopped swallowing the water we gave her, spitting it into a bowl held under her head.
Six days before she died my son visited her for the last time. Twenty-three years old, the cherished only grandchild, he adored his grandmother. He sat by her head, gave her sips of water when she woke up and clawed at the air trying to reach a glass. He held the bowl while the water dribbled out of her mouth. He wiped her mouth gently and used a clean, damp cloth to wipe her forehead. I like to think she knew it was him.
Dr. T. eventually told us that the doctors’ best guess as to the source of my mother’s nausea (in the absence of the results of the invasive testing she refused) was “a physical manifestation of depression.” In an 18-month period my mother lost her husband, her home, her ability to walk, her ability to take care of her own toileting and was in constant pain. Of course she was depressed. I have no doubt that her sub-conscious was capable of inflicting nausea upon her under the circumstances.
Mom passed away on June 21, 2014, three weeks after she refused the feeding tube. The last thing Dr. T. said to us was:
“Now I have to figure out what to put down for her cause of death.”
The Supreme Court’s recent decision limits physician-assisted suicides to:
“…a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition, including an illness, disease or disability, that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”
One would hope that the new laws being developed by our government will apply to someone in a situation similar to my mother’s. When my mother made the decision to refuse the feeding tube she made the decision to die. She was completely lucid and in charge of her faculties. She was 89 years old. Nobody should have to starve themself to death. And nobody who loves them should have to watch that process unfold.
About the author
Barbara Nutley Hunter lives and writes in Cobourg, Ontario. She has published short fiction in Lichen, Storyteller and Signatures. She was raised in Toronto by parents who believed in community service and lending neighbours a helping hand. In her spare time she owns and operates a bead store and makes jewellery that she never remembers to wear.
November 23, 2015
How Depressing
One of the issues that dominated my thinking as I was writing the book proposal* for Conversations On Dying was how to prevent it sounding completely depressing. Would it even be possible?
I was keenly aware of publishers’ aversion to depressing topics. Lisa Genova had to self publish her debut novel, Still Alice, because publishers told her nobody wants to read about a depressing topic like Alzheimer’s.
She proved them spectacularly wrong, but still. My book is about dying. If Alzheimer’s disease is too depressing, what chance would a book on dying stand?
There wasn’t much I could do about the subject matter. I decided I had to trust my subject, Larry Librach, to reel people in. Larry was a passionate, funny man, and he preserved his sense of humour to the last. It would not be true to say that he continued positive to the last, because he had his down days, and his setbacks. But his character was not eclipsed by them. It shone through.
In the event (and rather surprisingly, at least to me) nobody raised the issue of the subject matter when Trena White, my agent, began the process of pitching the book to publishers. But it was no surprise to me that the person who eventually decided to acquire the book for Dundurn Press, Margaret Bryant, had recent personal experience of deaths in the family. It’s how I snagged Trena too – her grandmother had died without palliative care, and after that she’d become passionate about the subject of end of life care.
So the book was sold, and I didn’t have to think about it any more. Until now.
The book is written. Now we’re turning our thoughts to marketing it, pre-release, and that “how depressing is that” question is popping up again.
So I was delighted when very first of my beta-readers for Conversations On Dying, my friend Sue Reynolds, said the found the book “uplifting”. It’s what I wanted to achieve. I knew parts of the book were visceral and direct. I didn’t want to gloss over the more grisly aspects of dying. But I was hoping too, to show that it is possible to die calmly, to preserve our integrity, to stay true to ourselves, even as we die. Here’s what Sue wrote to me after she finished the book: “It was a wonderful, satisfying read. Even though the sad ending was a foregone conclusion right from the title, and even though I cried when lovely Larry finally left us, I found the book quite uplifting.”
I’d asked another friend, Kristen den Hartog (author of And Me Among Them and The Occupied Garden) if she’d provide a blurb for the back cover, and she too found something positive to say: “It seems strange to call this book rejuvenating, since it peers so intently at mortality. But Conversations on Dying is just that.”
Not that I’m so very surprised by this. When, several years ago, I worked with Larry to produce some patient materials for the Temmy Latner Centre’s website, I’d spoken with most of the centre’s physicians about their job, and I’d asked a lot of them if they found it challenging or depressing.
I was surprised by their answers. All of them acknowledged that the job is immensely challenging. They want to give their patients more time than they have, and there are a lot of barriers in the way of them doing the best job they can (funding barriers, resource barriers, sometimes even physical barriers as they drive from home to home). But not a single one of them said the job was depressing. On the contrary, they all said it’s the most satisfying job they’ve ever had in their careers (and some of the older physicians had long careers behind them).
Many of them talked about the privilege of being welcomed into patients home and helping them and their families navigate this most critical journey. Some talked of the intensity and intimacy of the relationships they are able to build with their patients and their families. One, who had come to palliative care from family medicine, said she felt her work now made a real difference in her patients’ lives. In family medicine, she said, the work is often routine: wiping runny noses, writing prescriptions, referrals to specialists. In palliative care every patient is special.
Sue, in her recent blog post, mentioned her friend Janet’s husband’s reaction to Janet’s dying. “For Sufis,” he said, “this is the greatest privilege. To be with someone as they are dying. To serve them.”
It requires some intense mental gymnastics for those of us who were raised in a culture that tends to ignore dying and to deny death to come to see participation in dying as a privilege. But if I learnt anything from the palliative care doctors I interviewed half a decade ago it was that the culture needs a reset.
Death is challenging. It’s difficult. It can be agonizing and it will inevitably break our hearts when someone we love dies. But we can also be uplifted and rejuvenated by it. If that seems strange to you, don’t worry. I’m still trying to cope with it myself.
Before non-fiction writers start writing their books they produce a proposal, which is supposed to demonstrate to publishers that there’s a market for the book, to give them some idea of how big that market might be, and how to address it. The proposal is a business plan for the book.
November 12, 2015
When Cancer Came
This is the second in our series of essays by guest authors, who have been generous enough to offer their own stories of dying and death. Phyllis’s palpable difficulty in coping with the increasing physical and mental demands of her husband’s decline is poignant and instructive. I’m sure many caregivers will recognize echoes of their own experiences in what she writes here.
by Phyllis Diller Stewart
When cancer comes to call, it is entirely unexpected. We have spent no anxious days wondering about a suspicious lump, and no sleepless nights waiting for test results. Except in hindsight, there isn’t a single suggestion of cancer’s imminent visit. No, on this raw January day, cancer broadsides our family when it causes my husband to have a seizure in the middle of a Lone Star Cafe where we’re eating lunch. In six hours flat we speed from fajitas and salsa in the suburbs, through two local hospitals, and on to a big downtown ER. There, we’re warehoused until we can see a neurosurgeon about the scary grey mass that shows up on a CT of Paul’s brain.
My thirty-nine year old husband is tall and athletic, exuding togetherness and in-chargeness. He’s always the voice of reason, and very self-sufficient, so out-of-control seizures on the floor of a restaurant aren’t really his thing. I think this loss of control, shakes our children, fifteen-year-old Scott and Beth, thirteen, as much as the actual event.
When I finally get home that night, where my parents have taken the kids, I’m in shock and beyond exhausted. Huddled alone in our bed, cold, and so tired I can’t get to sleep, I picture Paul and I being forced to load our family into a boat, and then, with no warning, we’re launched onto storm-tossed seas. What I don’t realize is that the vessel we’re aboard is a canoe, and for the next twenty-one months it will be my job to keep us afloat.
Surgery is planned to remove as much of the now-confirmed brain tumour as possible, and for three days Paul must lie in his hospital bed and wait. It makes him crazy. Although the doctor, and a multitude of white-coated residents who populate this teaching hospital, frown and shake their heads when discussing our case, no one has out-and-out said what I already know. I work as a secretary on the palliative care unit of a hospital. At this moment two patients with his kind of tumour are spending their final days just a few feet from my desk.
The morning before surgery I’m able to speak to our neurosurgeon on the phone, so I ask for a “get out of jail free” card.
The morning before surgery I’m able to speak to our neurosurgeon on the phone, so I ask for a “get out of jail free” card.
“Sure. Take Paul home for awhile,” he says. “And while you’re there, make sure to get his affairs in order. If he doesn’t already have a will, he should get one.”
And there I have it. His expectation of my husband’s potentially imminent demise can’t be stated more clearly than that. The process of death has begun.
Paul comes home soon after surgery with two black eyes and a vicious-looking half circle of staples running from the middle of his forehead to just behind one ear. After a number of tests, he has been pronounced “cognitively intact” and I take comfort in those words. Radiation follows the surgery and that leaves him profoundly exhausted. Overall, though, he does so well that his driving license, lifted following the seizure, is restored, and he returns to work. Although things look normal, we know what we know, and every day we walk on eggshells while looking over our shoulders.
By mid-December Paul is getting headaches too painful to ignore, and at Christmas time we have to tell our families that CTs show the tumour’s been growing. Canoe-balancing is now a full-time job.
Because he’s young, the doctor says he’ll operate again and hopefully gain us a bit of time, but it’s not like before. The kids start to lose their dad, inch by terrible inch, and I gradually assume the role of caregiver.
Our boat pitches wildly as we recognize the changes we have to make to keep Paul safe. When he double-doses himself on narcotics, the extra dose meticulously recorded on a med schedule I’ve made, I have to hide the pills. He’s still clever enough to look for them, and it’s difficult to retrieve them every few hours and then hide them again.
He develops an unsettling way of looking at people when they talk to him, and his answers are sometimes wildly inappropriate. Twice, when I’m outdoors, he answers the phone. He orders new windows from the first telemarketer, and a reverse osmosis system from the second. We don’t need these products, but he’s lost the ability to discern not only this, but the fact that without him working we certainly can’t afford them.
This longest winter of my life involves three surgeries at the hospital downtown — an hour’s drive from our home in off-times with no traffic. We make multiple local ER visits, and Paul has a brief admission after falling and cracking his head on a concrete curb. His neurosurgeon has dismissed him, asking abruptly, but not unkindly, where he would like to receive palliative care. Paul looks to me for the answer, only partly comprehending this question.
In the midst of this chaos, I try to keep track of the kids: their marks and school attendance, extra-curricular events, and activities with their friends. I feel defeated, and often call my mother, sobbing to her than I can’t carry on. I also discover that unneeded hot showers disguise tears.
By the time spring finally comes, Paul has developed an unsteady gait and a decided lean to the left…
By the time spring finally comes, Paul has developed an unsteady gait and a decided lean to the left. I’ve grown linebacker shoulders helping him up from the bed and his chair, and then holding him upright when he walks. Diapers are now a necessity.
Mealtimes are torturously slow as I encourage each mouthful of food, and then wait while he hoards it in his mouth before swallowing. Unbelievably, the kids still invite their friends over for meals sometimes, apparently unembarrassed by their father’s strange half-vacant stare, and his difficulty with eating. I try to ask them how they’re doing but they seldom want to talk. I think I’ve laid out the facts pretty plainly over the course of their father’s illness, but it’s not until they ask me one evening if their dad is for sure going to die, that I realize my words haven’t sunken in. Or maybe I just didn’t state things as clearly as I thought I did.
By mid-summer cancer has reduced my husband to a physical and intellectual shadow of the intelligent, sports-playing person he once was. Death is nipping at his heels and there’s nothing to do but wait.
Terrible headaches assault Paul around the clock, and I have to wake up at night to medicate him and put cold compresses on his head. When he’s not in pain at night, he hums and pats his chest for hours, creating a hollow, drumming-drone, and I want to hold my pillow over his face until he stops. How can you love someone and want to do this to them at the same time?
Our parents take turns coming to our house to stay with him while I go to work part-time. Without this respite I don’t know how I would carry on. As it is, I get so little sleep that I feel like a physical and mental vegetable. I don’t tell anyone, but when I drive to work I often look at a large tree near the road, or an oncoming dump truck, and I think that if I’d just steer myself into it, I wouldn’t have to cope anymore. My kids are all that keep me from doing it. Some days the decision is almost made for me when I catch myself falling asleep at the wheel.
One bright spot in the midst of Paul’s steady decline is my youngest sister’s wedding…
One bright spot in the midst of Paul’s steady decline, which now includes almost-daily seizures, is my youngest sister’s wedding, and I ache to be more involved with her plans. She still lives at home with my parents and I wish I could go there to drink leisurely cups of tea over wedding talk, and hang out on their back porch, pretending I don’t have a care in the world. If I were there, I wouldn’t have to be at home. I wouldn’t have to be the optimist; the pillar of support that everyone seems to be looking to for confirmation that we’re just going through a rough spot. That eventually everything will be all right. I can’t talk to anyone these days without crying.
My village of family and friends is good and supportive, but living with teens whose father is dying isn’t exactly a walk in the park. Scott has his license now and he’s pretty good about taking his sister places, except when he’s not. I try not to think about the reckless speed at which I’ve heard he drives, but at the same time I realize how unmanageable our life out in the country would be if I were the only driver. I really try keeping my mouth shut about it, with limited success.
In mid-August I finally hit the wall. I’m so physically exhausted I don’t think I can stay alive until the end of the day. I’m so emotionally exhausted that I fear I may do my husband harm if I have to provide one more minute of care. Heaving Paul out of his comfortable chair, I start walking him to the door while explaining that we’re going to the hospital. I bawl when I tell him that he’ll stay there and I’ll go home. Those tears, though, are nothing compared to the ones that come when I explain to the doctor that I’m refusing to take my husband home. Paul sits in a wheelchair in the corner of the small examining room, observing the scene through uncomprehending eyes, and guilt impales my heart. He has no idea that our canoe has nearly capsized.
The brief days I have to rest while he’s admitted to hospital are busy…
The brief days I have to rest while he’s admitted to hospital are busy. Plans for a homecare nurse, a hospital bed, and bedside commode are made, and I must be at home to receive the supplies. We also get a temporary wheelchair ramp to the porch and a reclining wheelchair to go with it. Paul can no longer hold his head up much of the time, and the reclining wheelchair we’re given will make him more comfortable when he’s not in bed. Although I’m so physically and emotionally done that I could easily leave my husband at the hospital with a clear conscience, I feel tremendous expectation from medical staff and family to care for him at home, so that’s what I do.
My sister’s wedding plans progress. She’s getting married on September 26, just a few weeks away. There are five girls in my family and she’s asked us four older sisters to co-emcee their wedding reception. This gives me something to look forward to, and I love her for it.
In early September I’m at work when my mother calls. She and dad are staying with Paul and she tells me he’s breathing funny. From what she describes, I’m sure it’s Cheyne-Stokes respiration, an end of life occurrence I’m familiar with from my job at the hospital. I come home right away and call Paul’s family. I tell them I have no crystal ball, but I think it would be a good idea to come and say their goodbyes.
It turns out that death will wait awhile longer …
It turns out that death, which had seemed so imminent, will wait awhile longer, lingering nearby while we watch Paul slip closer and closer to it. I no longer go to work. The homecare nurse has taught me how to set up an IV and give medications. I also learn to suction him. I give him a bed bath morning and night, and change the linens often. I like that my mother has given me some masculine dark-striped sheets. It makes the hospital bed look a little less institutional. One of Paul’s eyes won’t close completely, so I put in artificial tears, and do mouth care because he’s mouth breathing a lot.
The hospital bed is in our large family room, quite near a big patio door. Even if he can’t look at the beauty of our country lot, I can enjoy the view and the sunshine while I work. I’ve set up my single bed nearby, on call through his still restless nights.
Scott and Beth try to carry on with their regular routines, but it’s hard for me to tell how they’re feeling and they don’t share much. One afternoon we’re at their dad’s bedside together. Paul’s best sport was baseball and he passed on his love for the game to Scott, teaching him to be quite a good pitcher. Although his eyes are closed and it doesn’t appear that he even knows we’re there, Scott places a baseball into his dad’s hand, closing his fingers around it. To our surprise, Paul raises his hand and using his fingers to move the ball, he places them first in one pitching position and then another: knuckle ball, slider, curve ball, the ball perfectly gripped, just as he once taught Scott to do. It feels like our own little miracle.
Death is now so close we can almost touch it, and a certain peace falls on our house. Our canoe is arriving, at last, in the calm waters of a bay, and there is something right about this. Days take on a kind of rhythm: personal care, nurse’s visit, family and friends dropping in. On one hand, I just want to be alone, savoring this less turbulent time, but I know I must share what is left of Paul with others who love him too.
One thing I’m looking forward to, along with Scott and Beth, is my sister’s wedding. A dear nurse friend from work has kindly said she’ll spend the wedding day with Paul. It’s still early in the cell phone era, but I track one down and I’ll keep it in my purse or beside my plate at the reception in case she needs me if . . . but we never finish that sentence.
Scott and Beth are both in the wedding and I’m pleased and thankful that they have something so grown-up and exciting to look forward to. Scott’s a big guy – over six feet tall now – but he’s still only seventeen. Beth is nearly fifteen and a petite little thing. They are preparing to go to the wedding rehearsal and ask me if Dad’s going to be okay while they’re gone. With tears in my eyes and voice I tell them I can’t predict what will happen, but I assure them that they have my complete blessing to go, and I expect them to have a good time. Afterward they’ll attend the rehearsal dinner and then spend the night away. The bridesmaids are all staying at my parents’ house, and the guys are going to a hotel. I won’t see them again until the next day when they’re at the front of the church, dressed in their wedding finery.
And I have my own party to look forward to. Because one of my sisters lives several hours away in the States, we haven’t been able to finalize plans for our co-emcee jobs at the wedding reception. My sisters are bringing dinner, and I’m so looking forward to being with them.
We eat our meal and do our planning at a table near Paul’s bed. He’s lying peacefully, and I wonder if he enjoys hearing their familiar voices and our laughter nearby. We have a really good time together and it’s very late before the girls decide to leave. They ask what I have to do before I can go to bed, and I tell them that Paul needs some medication, and I always bathe him before tucking him in for the night. I’m quite unprepared when they say they want to help.
I look back on this evening as a time of humble sacrifice on their part. Although the sister getting married is a nurse, none of the rest of us are, and so they have no previous experience doing something as intimate as bathing another adult. I bring a bowl of warm water and fresh washcloths, and we start. The lights are dim and soft music plays as we wash first his face, then upper body, arms and legs. This is the first time they’ve seen him so exposed, and his wasted body and limbs must be a bit of a shock.
My next to youngest sister wonders if he’d like a massage and I can only imagine that in whatever dimension Paul’s mind is in these days, a massage by loving and gentle hands will be a good thing. With scented lotion we massage him all over, and then they slip out with hugs and soft goodbyes.
I tidy the room and get myself ready for bed, and then I hear the unmistakable Cheyne-Stokes breathing again. In only a few minutes the periods of apnea lengthen and I know there’s no time to call anyone.
Sitting at the piano, which is near the foot of Paul’s bed, I begin playing softly while listening over the music for his breath to resume after each period of silence. Before long there is none. Tears slip down my cheeks as I finish playing the song that has become a favourite of mine.
Sunset and evening star
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea.
I go to Paul’s bedside and pick up a stethoscope from the table there. Placing it to his chest I hear nothing but a deep well of silence. Lowering the head of his bed I close his eyes and his mouth, gazing for a long minute at his face, gaunt from illness, but so very peaceful now. My canoe is safely tied to the dock.
So this is what it feels like to have your husband die, I think to myself, acutely aware of the comfortable silence, and a sense of relief that has enveloped me. I stay with him for a while, reluctant to awaken anyone else at this hour. His parents. My parents The kids. But it must be done, and so I go to the phone and start making calls.
About the author
Phyllis is a writer who has completed both basic and advanced writing courses and numerous writing workshops. Her short stories have been accepted for publication in books, newspapers, and the Word Weaver, a publication of the Writers’ Community of Durham Region.
Most recently she was long-listed in the prestigious CBC Canada Writes short story competition.
Her stories and poetry are also included in books, such as Anthology: From a Cottage Porch, Twelve Stories High, a publication of the Canadian Authors Association, and If This House Could Talk: A History of Henry House.
She is a member of the Professional Writers Association of Canada, and the Writers Community of Durham Region. For more information about Phyllis and her work, visit her blog: Phyllis Writes Words
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