breathe

Bye Dad – Part 1

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However while the Smile-Surgery was a success Tara’s fortunes were fading. The good contracts that made 1996 so successful were winding down and the new testing wasn’t making up for it. Reluctantly in March of 1998 I had to let Jeanne go. It was back to Mom, Dad and me again. The work that came in was just enough for us to handle.

By May of 1998, Tara was running at a good pace when Dad found he had trouble closing his left hand. Then his back started to bother him. He went to see a doctor who found that Dad’s cancer had spread to his brain and lower back. There was little the doctors could do. Chemotherapy wouldn’t work this time and radiation therapy was ineffective. This cancer seemed untreatable. Dad’s condition steadily worsened. Eventualy he lost all movement in his left hand. He had more and more trouble walking. Finally Dad had to use a walker. He clunk-stepped his way around the house just as I had.

One Saturday in July at home he fell. He had put out his right arm to block his fall but broke his arm. An ambulance took him to Port Arthur General Hospital where they set his arm. Dad spent a week in hospital and then came home. The movement in his legs got worse and the arm with his good hand was now in a cast. Dad became bed ridden. Now I pushed Dad around in a wheelchair. Within two weeks of Dad returning from the hospital we realized we couldn’t take care of him at home.

Tuesday August 5, 1998, Dad was admitted to St. Joseph’s Hospital hospice unit. An ambulance came to take Dad to the hospital late that morning. He never looked back as the paramedics put him into the ambulance. Dad sensed he would never see home again.

The hospice unit was a row of 14 private wards on the fourth floor. They faced the front of the hospital and lined one side of a wide hallway with a large picture window at the end of it. On the other side of the hall were supply rooms and a nurse’s station. Dad had the last room at the end of the hall. I brought Mom to see Dad every evening. Catharine often came to visit with Dad then too. I stopped by to see Dad each morning on my way to work.

The nursing care was exceptional and Dad was glad to be there. Dad’s condition quickly worsened. Being bed ridden he developed pneumonia. Two weeks after Dad was admitted to St. Joe’s he suffered a small stroke during the night. It affected his speech. The morning after his stroke his speech was slurred and I couldn’t understand him. I could tell from the sound of his voice and the way he looked at me that Dad knew what he was saying. Dad repeated himself but I still couldn’t grasp his words.

“Dad I wish I could understand what you’re saying.”

I knew then the heart-rending frustration Dad must have felt in not being able to understand me when I was 13 during my radiation therapy reaction. It was a few days before I understood him again. After his stroke Dad spent a lot of his time sleeping. Now when I stopped by in the mornings I mainly watched him sleep. I stood by helplessly as Dad’s life trickled away day by day. I knew my time with Dad was growing short but my heart wouldn’t accept it. I would have willingly stayed with Dad all day but each morning Tara called me. Tara was doing well but Dad was slipping away.

The afternoon of August 25th, Mom had Fr. Allen, the Corpus Christi parish priest, give Dad the last rights blessing as he lay in his bed at St. Joseph’s hospice. Fr. Allen stood to Dad’s left and Mom stood at his right while I watched from the foot of his bed. Catharine was tied up at work. Dad was silent through the prayers but just after Fr. Allen left Dad broke down. This was final. His tears said what all of us had avoided saying. Dad’s life was coming to an end.

That evening as Mom bent over Dad to settle him for the night Dad looked up at her. With deep sincerity in his eyes and voice he said, “I kept my promise. I stayed with you.”

“Yes Peter. You did,” Mom replied stroking his hair.

It was apparent Mom and Dad’s marriage had been strained for years, but at that moment there was a spark of the love that brought them together. Right then I don’t think either of them was aware that I was present.

As his cancer progressed there were times when I think Dad didn’t quite know who Mom, Catharine and I were. For a man who used his mind all his life it was hard to see it fading. Dad got to know the nurses. They were around him all the time. There was one nurse in particular he liked named Clara. Once he winked at her and another time he told her she was beautiful when she was bent over him tucking him in for the night. Dad’s body was failing him and his mind was fading but there was nothing wrong with his eyesight.

On the evening of Tuesday, September 1st, exactly four weeks after he was admitted to St. Joe’s, Dad knowingly looked at me and called me by name to ask me to adjust his bedside lamp. I hadn’t heard him say my name for a week. At twenty to ten Mom and I were getting ready to leave Dad for the night. The nurse taking care of Dad that evening went to settle another patient down for the night. Then she would come back to settle Dad. After that Mom and I would go home. Mom walked out of the room and stood in the hallway looking out the picture window that we had both looked out of many times. I sat in the chair opposite the foot of Dad’s bed. He was resting quietly on his back when all of a sudden Dad popped his head up looking at me in distress as he waved his arm. He couldn’t call out. Dad seemed to be choking. I rushed out of the room and up the hall to get the nurses. Mom saw me and knew something was wrong. She hurried in. When she saw Dad she cradled his head. “I’m here Peter,” she said. Mom knew it was all she could do.

I found Dad’s nurse. I said, “I think he’s choking.”

”Choking!” she exclaimed. She and I hurried down the hall followed by nine other nurses. When we got back Dad had lost consciousness. I stood with most of the nurses at the foot of Dad’s bed and watched with them.

While still cradling Dad’s head Mom said, “Brian, hold Dad’s hand.”

The nurses made room for me to go beside Dad and I held his hand. Then Mom picked up the phone on the bedside table. “Catharine, come to the hospital … come now.” She cradled Dad’s head again. Catharine lived 20 minutes away and came as fast as she could.

The pauses between Dad’s breaths became longer. He started to snore as he inhaled. Then there was one long pause, a sharp snore, a slow exhale and then silence. The head nurse, who had witnessed all of this, took out her stethoscope and listened to Dad’s chest. Then she put it away.

“What?” I thought. I reached over and felt Dad’s neck. “I can’t get a pulse,” I said.

“I can’t get one either,” she replied.

It was only then that I realized I had held Dad’s hand as I watched him die. I looked at Mom. “Dad’s dead?”

“Yes Brian. You didn’t know what was happening?”

“No,” I said.

“He threw a clot,” the head nurse said to me.

No more than five minutes had passed from the time Dad waved his arm in distress to his final breath.

Brian Wins!

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1974 began with me clunk-stepping my way around the house. It was slow going but at least I could get about. Using the walls and furniture for support was no longer an option. I had to keep my knees locked when standing or walking. If they buckled even slightly down I went. I had to climb furniture to get up again. If I fell in a hallway with no furniture around I was stuck. Mom suggested putting a horn on the walker so I could honk for help. Dad fixed a bicycle horn to the walker. At the same time he attached a blue plastic bicycle basket to the top crossbar. This simple basket afforded me a lot of independence. I could do things like get something from the cupboard, drop it in the basket and take it to the kitchen table. It may not seem like much to an able-bodied person but after months of having to depend on other people to do everything for me except breathe I welcomed the freedom.

Dad pushed me around in a wheelchair when we went outside. All street curbs were square. If we were going down a sidewalk and we wanted to cross the street, we had to wheel down the sidewalk of the adjoining street to find a driveway to take us to street level, cross the street, go up an adjacent driveway to the sidewalk, go back up the street and continue down the sidewalk that we were on originally.

Dad and I wanted to see a hockey game at Fort William Gardens in January. Dad phoned the Gardens to find out how to get access for someone in a wheelchair. He was told that he had to wheel me in the back way where they herded the circus elephants, go under the stands and stay at ice level. When I heard this I said, “No.” Why couldn’t I go in the front doors like everyone else? Why shouldn’t I?

In February the doctors started another attempt to wean me off decadron. They lowered the dose as before but this time they replaced the decadron with prednisone. This regimen worked for me and by midsummer I was off all medication.

Prednisone: A synthetic corticosteroid medication used to reduce swelling and inflammation.

As the dose of the medications decreased my legs got stronger, my eye sight started to clear, my co-ordination, speech and swallowing improved, and I was expanding my chest again. My clunk-stepping was faster and I leaned less on the walker. I started to lift my walker and take two or three steps. I felt a wonderful sense of achievement because I knew in my head and heart I would walk again.

At long last it was time to put the walker aside and take a step without support. I was nervous. I remember standing beside the fridge in the kitchen. I held the walker beside me with my right hand and firmly grasped the counter with my left. Then I let go of the counter and walker. With my arms spread wide I stepped forward into Mom’s waiting arms. With daily practice that one step became two then three then four. I can’t adequately describe in words my sense of joy, freedom and accomplishment in taking that one first step.

I have always loved the rich character and ornate architecture of 19th and early 20th century buildings. But I am dismayed at how they were designed with only able-bodied people in mind. These buildings have been retrofitted to be wheelchair accessible. However they can never be as accessible for persons with mobility problems as modern buildings that are designed to accommodate people in wheelchairs. Even though I can walk, because of my mobility problems due to my poor balance, retrofitted buildings are harder for me to use. I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go.

I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go. My parents arranged with the local Board of Education for me to receive my high school education through the home schooling program set by the Ministry of Education in Toronto. I guess you could say my high school was 909 Yonge St. in Toronto. When asked I say, “Hillcrest,” to avoid explanation.

Academically I received a thorough high school education. What I missed out on was the social part of going to high school. When I attended LU I listened to my classmates talk about the parties and outings they had with their high school friends. I missed all of that.

The Ministry mailed the texts and materials to me. At home I wrote out the assignments onto a note pad of lined paper with a section at the top of each page for name, date, course and assignment number. I tore the pages off the pad, put them in the envelope provided and return them to the Ministry for marking.

At the time I started the high school correspondence courses my writing was reasonably legible although my hand was slow. Given my blurred eyesight my writing stayed on the lines of the page for the most part. But because of my poor vision I couldn’t read the books or instructions. Mom began reading the books to me. For three years we sat across from each other at the dining room table. She read course instructions, assignment questions, text books, short stories, novels and plays as I made notes. I best remember the dystopian world of Fahrenheit 451 where a government tries to suppress the knowledge of its people through burning books. It was scary. Never had I imagined such a society could exist. I was inspired as I listened to The Miracle Worker, a play about the fortitude of a young woman, Anne Sullivan, who taught Helen Keller, a deaf/blind girl, to read and write. Helen Keller became a personal hero as I learned about her resolve to conquer her disabilities just as I was trying to overcome mine. The correspondence courses didn’t start in September and finish in June. They went all year round which allowed me to work at my own pace.

On the other hand math was Dad’s domain. He read the math texts and course assignments to me. However it’s hard to read out an equation so the listener can understand. So Dad and I sat beside each other. I made notes as he read. When I needed to I held my magnifying glass over the equation or formula to read it for myself.

After the first year of study my eye sight began to clear, my hand was faster, my writing was more legible and it stayed on the lines more. Even the teacher who had been marking my assignments at the Ministry of Education in Toronto noticed the improvement.

Christmas of 1974 was a happier time than the last. There was no doubt in anyone’s mind I would live. I was getting steadily stronger, speaking more clearly, no longer incontinent and able to do more things for myself. The year 1975 would be a time I could look to the future once more. Brian wins!