Goodnight, Bob

© 2014 Faye McKnight. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 08/07/2014

ISBN: 978-1-4772-5849-1 (sc)

ISBN: 978-1-4772-5848-4 (hc)

ISBN: 978-1-4772-5847-7 (e)

Library of Congress Control Number: 2012914417

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TABLE OF CONTENTS

INTRODUCTION

AMYOTROPHIC LATERAL SCLEROSIS

TEN MINUTES

GOODNIGHT, BOB: APRIL 30, 2006

LITTLE BIT OF HISTORY

A YOUNG FAYE BOOKER

FLORIDA WAS DIFFERENT

BOB LOVED THAT CAR

MEMORIES AND BREAKFAST

OUR NEW HOME

THE DRIVING LESSON

INDEPENDENCE

HE UNDERSTOOD ME

ON MY WAY

LONG AND STORMY STORY

A SPECIAL DAY

THE MONSTER REVEALS HIMSELF

LET THEM STARE

HOSPICE

I REMEMBER

FEAR

ACCEPTANCE IS HARD

THE STEPS

IT IS NOT HAPPENINGTO ME

BREAKDOWN

REALITY

RANDOM THOUGHTS

HE DOESN’T ANSWER ME

HOME MAINTENANCE

THINGS CHANGE

STOMACH PROBLEMS

A TIGHT HOLD

SELF-EXAMINATION

THE CLINIC

THE HOSPITAL

ALLOW ME TO HELP

WHO IS THAT PERSON?

WHERE IS HELP WHEN YOU NEED IT?

TIME HELPS

THE WOMEN’S ROOM

KNOTS

RUN AWAY EMOTIONS

GUILT IS NOT AN OPTION

ANXIETY

DANGER AHEAD

THE LITTLE WOMAN

THE MONSTER MOVES ON

THE CHAIR

THE DREAM CHAIR

HEART ATTACKS AND ALS

YOUR PAIN IS YOURS

A TYPICAL DAY

STRATEGY FOR SURVIVAL

I DID NOT HEAR HIM

WHEN THE CAREGIVER CAN’T

WHAT HAPPENS?

WHAT ABOUT ME?

MILES OF RIBBONS

DO YOU HAVE TO GO?

TAKE CARE OF YOURSELF

I HAVE A HEADACHE

POOR TIRED, WET, FAYE

ROUND THE WORLD IN FOUR WEEKS

DEATH TOO SOON: MICHAEL

TOO MANY TEARS

THINGS GET WORSE

HIS BED

NOW IS NOT THE TIME TO CRY

STAY IN THE NOW

FRIENDS

SOME QUESTIONS HAVE NO ANSWERS

STOP IT SOMEHOW

GOODNIGHT, BOB

FATHER’S DAY

IN THE MIDDLE OF THE NIGHT

REMEMBERING A SPECIAL DAY

HIGH FLIGHT

THE MONSTER HAS A NAME

HELPFUL INFORMATION

ORLANDO SENTINEL: MAY 2, 2006

I THANK MY THREE DAUGHTERS FOR THE TIME THEY SPENT EDITING GOODNIGHT, BOB.

DENICE WAS HONEST, BUT GENTLE WHEN SHE GAVE ME HER SUGGESTIONS FOR CHANGES. HER ENCOURAGEMENT PUSHED ME TO CONTINUE WHEN I WAS READY TO QUIT. WITHOUT HER BY MY SIDE, THIS BOOK WOULD NOT HAVE BEEN COMPLETED.

DEBBIE SPENT HOURS READING AND EDITING. HER ATTENTION TO DETAIL WAS VITAL TO THE PRODUCTION OF THE BOOK.

"I HAVE FOUGHT THE GOOD FIGHT,

I HAVE FINISHED THE RACE,

I HAVE KEPT THE FAITH."

New American Standard Bible, Second Timothy 4:7

INTRODUCTION

My intention when I began writing the following pages was to journal my feelings and record my husband’s physical status as he fought his battle with Amyotrophic Lateral Sclerosis (ALS). As with many intentions, that goal fell by the wayside as words flowed from my mind through my fingers onto the pages of my computer screen. Instead of a chronological listing of symptoms and sequence of treatments, what evolved is a blending of two stories.

It is the history of our journey through the maze of physical demands and emotional turmoil that characterizes the relationship between a husband and wife when it is intertwined with that of patient and caregiver.

Goodnight, Bob is a love story. The book tells how love, trust, and commitment grew as we faced the struggles and celebrated the successes during our 51-year relationship.

As you read our story, please remember that the events, memories, and recording of emotions contained on the pages of this book are my perceptions. Bob is not here to tell his side. He is not able to add, subtract, correct, or rebut what I have written. Trust me, if he were, I am sure that his side of the story would be different.

We fought our war with the monster for four years. We lived our story for 51 years.

AMYOTROPHIC LATERAL SCLEROSIS

KNOWN AS ALS OR LOU GEHRIG’S DISEASE

Lou Gehrig: June 19, 1903-June 2, 1941

A Hall of Fame baseball player for the New York Yankees

Amyotrophic Lateral Sclerosis is a progressive neurodegenerative fatal disease. The disease is marked by muscle weakness, spasticity and hyperreflexia due to the degeneration of motor neurons in the spinal cord, medulla and cortex. When the motor neurons die the ability of the brain to initiate and control voluntary muscle movement is lost. The progressive degeneration of the motor neurons eventually leads to paralysis and death.

ALS may affect the heart by disturbing blood flow to or from the heart. The abdominal muscles may be compromised and muscles will cramp. Nausea may occur. It may be difficult for the patient to swallow and a feeding tube will have to be surgically inserted in the abdomen for the patient to receive nourishment and medication. ALS causes painful muscle contractions in the arms, legs and rib cage.

The patient responds to external temperatures and feels hot and cold. Bowel and bladder functions are normal. ALS does not affect hunger or thirst, although frequent episodes of nausea may decrease the patient’s desire to eat or drink. Dehydration is a concern. His intellect remains as it was before ALS. Vision and hearing are not hindered. He understands, hears and sees everything going on around him. He is a prisoner in his own body.

A small percentage of those with ALS have pseudobulbar affect (PBA); a neurologic disorder that selectively effects motor neurons that control voluntary muscle activity such as speaking and breathing. A patient who is suffering from PBA will have episodes of uncontrollable laughing, crying or anger that are not related to what is happening.

PBA is thought to occur when the disease damages the area of the brain that controls emotional expression. The damage disrupts the brain’s signaling which causes a short circuit that triggers involuntary expressions of emotions.

ALS causes personality and behavioral changes that often have a negative effect on interpersonal relationships.

The disease attacks both male and female. The onset is usually between the ages of 40 to 70 years. Survival time is from three to five years. However, there are some recorded cases of patients living as short a time as six months or 10 plus years. At least one person in every 500 of the world’s population is diagnosed with Amyotrophic Lateral Sclerosis. There is no cure.

TEN MINUTES

The bright overhead light shining in my eyes makes my head throb. The light dries my eyes; it feels like my upper lids are made of sandpaper. I can’t lift my hand to rub my eyes. No matter how hard I try, my hand doesn’t move.

The television is loud. The throbbing in my head is following the beat of the music coming from the TV. I want it off! It is a strain to get my lips and tongue to form the word help. The result is a joke; all I manage is a whisper.

The clock on the dresser says I’ve been alone almost 10 minutes. Ten minutes isn’t a long time. Why does it feel like hours since she left the room?

I’m hungry. I was nauseated at lunch so didn’t eat. Eating is scary; I choked the last time I tried to eat. I don’t want to believe I have a choking problem. Maybe I’ll try something I don’t have to chew, like soup.

I need to use the urinal. Dear God, I can’t hold it. I have to pee! I have to let go. The urine is warm. It soaks my legs and spreads from the diaper to the bed. I’m embarrassed. Now she’ll have to change the bed and me again. She tells me she doesn’t mind doing those things, but I’m still embarrassed. I feel better now that I’ve peed.

Maybe she won’t come to my room tonight; maybe she is sick of the whole thing. Stop it! Stop thinking that way. Why do I do that to myself? She always comes back!

The panic is beginning! I feel the sweat on my face; it is dripping from my forehead into my eyes and ears. Don’t cry. Tears only make it worse. Where is she!

I see her. She is hurrying. The clock on the dresser tells me she was gone 11 minutes.

GOODNIGHT, BOB: APRIL 30, 2006

I left the bedroom to get a drink of water. My sister was with Bob when she suddenly came running from the bedroom calling for me to come back.

Come, quick! It’s happening, hurry!

In her excitement, she grabbed my shirt, pulled me into the bedroom, and left us alone.

I was alone with my husband. I let go of all the defenses that had carried me through the last years. The moment I had fought so long to keep out of my consciousness was here. I had no choice but to acknowledge it, not only with my head but with my heart as well. The pain washed over me. It was too much.

I crossed my arms over my chest to try to give myself comfort as I rocked back and forth at his bedside. The desire to lie beside him throbbed through my body. I wanted to hold him and somehow make it all go away.

He was so thin I could see his heart beating. I watched him closely so I would know when it was time to say a final good-bye.

I kissed him and with my mouth pressed gently against his ear, whispered the words said every night for 51 years.

Goodnight, Bob.

When his chest no longer moved and his heart stopped beating, I asked God to welcome him home. A heavy black blanket of sadness covered me, but the unbearable pain was gone. I did not cry.

As I sat by his bed holding his hand, a feeling of overwhelming fatigue slammed through my body.

It’s over Bob. We can rest now.

WHERE TO BEGIN?

"BEGIN AT THE BEGINNING

AND GO UNTIL YOU STOP."

The King, Alice in Wonderland 1939

LITTLE BIT OF HISTORY

When we were married in 1955 Bob said his only thought was to give me all I never had and protect me forever. I soon learned, in his eyes, protection meant control.

When he was about nine years old, he came home from school to a locked, empty house. He sat on the top step holding his books tightly to his chest waiting for someone to come for him. He kept telling himself that someone would find him; someone had to find him because he did not know where else to go. He said he tried not to be afraid, however, when afternoon turned into evening he could not help himself, he began to cry. That day he was more afraid than usual because this was the first time they did not take him with them, or come for him at school. He had no way of knowing that the property owner had evicted his family. When they vacated the house, all of their belongings, except for what they were wearing were left behind. He sat on the steps for several hours after dark until someone came for him.

That was not the first time the family had received an eviction notice or a relative had told them they had to leave. Bob’s father was an alcoholic. Bob was used to moving around the city, it was a familiar pattern; his father would stop drinking, find a job, and they would move to a new apartment. Bob registered in a new school and began to make friends, when suddenly his father would start to drink again. It was all a part of Bob’s world.

He had no control over his environment. He was a tense child who had constant anxiety attacks worrying about what might happen next. He told me he never felt safe, he always felt he was in the way, that the fights between his parents were somehow his fault.

As an adult Bob believed if he could control his environment there would be no more sitting on the steps alone, wondering why no one answered the door. If he coordinated our lives, we would not have to worry about locked doors since he had the keys.

Bob believed his job was to protect me. My childhood history was just as bad as his was. Both my parents were alcoholics. My father beat my mother when he got drunk, which was often. They frequently disappeared for days on drunken binges leaving my sister and me alone.

Bob felt he had to be strong for both of us. I had Bob to hold me and tell me not to be frightened when the world seemed scary. Bob had no one. The protector felt alone. Over the years, his hold on me got tighter. He thought he was helping me, but in fact, he was choking me. He once told me I was like a small puppy that kept escaping from the safety of her backyard. He tried to keep me safe by building higher fences.

I was 15 when we married and Bob was 21years old. As I matured, my fears about the world outside my home decreased. Bob’s fears about possible unknown dangers increased. Eventually, I wanted to venture from my safe home. Against Bob’s wishes, I learned to drive and went back to school. Bob resisted every move that took me away from the house. I was the only person he believed he could trust. He had to be sure I would not leave him.

We had many discussions about my desire to expand my environment and his need to keep me close.

SNAPSHOTS

"LIFE IS THE ART OF DRAWING

WITHOUT AN ERASER"

John W. Gardner

A YOUNG FAYE BOOKER

This picture was taken in 1954, the year before we were married. Bob said he knew he was going to marry me so he labeled my picture Faye McKnight instead of using my maiden name, Faye Booker. I was 14 years old.

One of the biggest recording hits of the time was Nat King Cole’s song, Too Young.

FLORIDA WAS DIFFERENT

We visited Silver Springs, Florida, in 1989.

We would have been laughed off the street in Philadelphia if we were seen wearing sneaks. In the big city, the young population wore loafers or boots. Sneaks were for gym class or basketball players. We had a lot to learn about our new home.

BOB LOVED THAT CAR

Bob drove to Orlando in our recently purchased, second hand Ford with our dog as a passenger. The girls and I caught up with him a few weeks later. He was 24 years old in this picture.

ORLANDO

WE’RE OFF TO SEE THE WIZARD.

The Wizard of Oz, Film 1982

MEMORIES AND BREAKFAST

In the early stage of Bob’s illness, we often had breakfast in our office. The desk faced a large picture window that gave us a sweeping view of our condominium courtyard and the birdbath and feeder under a large oak tree. Bob sat facing the window and I sat beside him so I could feed him. Sometimes we just sat and ate, other times we talked. It was always a pleasant time. Mornings were Bob’s favorite time of day and breakfast his favorite meal. One morning we were reminiscing about the days leading to our move to Florida. Martin Marietta, now known as Lockheed Martin, came to Philadelphia in 1958 to recruit several hundred employees and relocate them to Orlando to work in their new facilities. It was difficult to find that many people willing to move to a strange city, even if it was in Florida. The events leading to our move and our first years in Orlando are etched in my memory. Time is a wonder drug for memories; it can make the difficult times sweet and the painful times humorous.

Back then, there was no Disney, or any of the other large theme parks. Few people knew Walt Disney’s plans. Large hotels, shopping malls, and the other attractions that dot the area today did not exist. Orlando was pure country. The industries in Orlando and the surrounding areas were citrus or cattle. There was one nightclub, which was actually an oversized bar. A new 7-Eleven had just opened. Sub or hoagie sandwiches were unheard of and soft pretzels made the natives gag when we talked about them. International Drive, a busy street of large hotels, shops, and attractions now, was nothing but sand, fleas, and skinny trees.

I saw Martin Marietta’s ad in the newspaper. It said, Martin Marietta is looking for employees willing to relocate to Orlando, Florida. It gave the location and time for interviews. I showed the ad to Bob.

You need to go, I said.

You must be crazy! Where is Orlando and why would I move us there? Bob barked.

We’ll look it up. It sounded too good to pass up. I went looking for our Atlas.

No, don’t bother, he said