Down the Rabbit Hole: A Journey Through End Stage Dementia

By Veronika Zyss

This is a must read for anyone touched by dementia.
This first person account of end stage dementia will leave you speechless. Join Stephen and Lauren as they try to navigate their ever changing landscape. Delve into a deteriorating mind where you too will experience guilt, denial, fear; anything but acceptance to this unrelenting thief, as you become absorbed in the road to nowhere, the one leading you down the rabbit hole.
Down the Rabbit Hole is an honest, relatable look at a disease that leaves loved ones alive but vacant of the things we once loved.

• Language: English
• Publisher: Partridge Publishing Singapore
• Release date: Aug 14, 2018
• ISBN: 9781543747140

Veronika Zyss

Veronika Zyss began her writing career just before her fifty-eighth birthday, prompted by a family tragedy. She spends her time between Toronto and Singapore and has one son who is a physician in Los Angeles. She looks forward to writing more stories about grief, loss, and moving on.

Book preview

Copyright © 2018 by Veronika Zyss.

ISBN:            Hardcover            978-1-5437-4712-6

                     Softcover              978-1-5437-4713-3

                     eBook                   978-1-5437-4714-0

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This is a work of fiction. All of the characters, names, incidents, organizations, and dialogue in this novel are either the products of the author’s imagination or are used fictitiously.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

www.partridgepublishing.com/singapore

CONTENTS

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

CREDITS TO THE FOLLOWING:

Division of Anatomy

Department of Surgery

University of Toronto

Burial and Committal Service for June 8, 2017, pamphlet

Vivaldi, Four Seasons, Spring

The Four Seasons Sonnets

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This book is written in loving memory of my husband, Roman Zyss.

It is written to help others travelling down our one way path. I have set up guide posts and signs along the way, to help you with your journey, to ease your feelings of denial, guilt, inadequacy, fear. Most of all, to let you know, you are not alone in your conflicting feelings where you may have wished your loved one dead. Our guilt survives long after our partner’s physical death. This is natural, it’s human.

I’ve learned to survive. I’ve learned to be strong and to go out and have the best life I possibly can; as this is what my husband would wish for me, and I for him.

I’ve also learned time does two wonderfully strange things.

First, it changes our memory, erasing the worst of our experiences. The good is amplified, exaggerated in our minds; while the harsher parts are made smaller, less relevant than the time we experienced them, as then they were all encompassing, all consuming.

Secondly, we remember the person through a different lens. The longer they are gone, the more sainted they become.

Thank you Roman for being in my life and for loving me when you had presence of mind.

I will always remember you with a smile.

For every person who could not see past their tears.

You can handle life’s difficult situations with dignity, or fall apart. The choice is yours; it’s all a state of mind.

CHAPTER 1

Looking back is easier said than done. Where does one begin a story? At the very beginning, somewhere in the middle, or nearer the end, or perhaps after the end, as if looking at a reflection in a pond? I have come to understand that memory is fluid; it is what a person chooses to remember, rather than what actually happened. Reality has nothing to do with the memory of an event.

Stephen died. That fact is indisputable. He died June 18, 2015, also indisputable. Or, his body died on June 18, 2015; his soul died many years earlier. That fact is disputable.

I am sitting alone in the chapel at St. James’ Cemetery and Crematorium. Today is June 8, 2017. I arrive two hours early to sit with my thoughts. Stephen is being honored today. This is his memorial service as he did not have a funeral. My mind races in all directions. I remember bits and pieces of our life together, the good, the bad, the insane. It’s all one big blur. Years and years rolled up into one big blur of a memory.

My memory is interrupted by the sermon. It must have begun. I must have lost time again.

… this is an extraordinary opportunity that we are privileged to have had the generous donation by your loved one … has inspired us to have a deeper appreciation of the value of human life, by giving us the opportunity to care for his body with respect, empathy and dignity … This invaluable experience is only made possible by the selfless donation by your loved one, Stephen Hanson. We are incredibly humbled and appreciative for this…

My mind drifts again. I tune out the words. I stare at the pianist, the soloists, the, the … My mind is blank. I hear the words as echoes in time. I am here, holding Stephen’s ashes in my lap, while my mind remains elsewhere, lost in time.

There is a time for everything, for all things under the sun;

A time to be born and a time to die;

A time to laugh and a time to cry,

A time to dance and a time mourn,

A time to seek and a time to lose,

A time to forget and a time to remember.

The beautiful sound of a tenor’s voice breaks the silence in my mind. His voice is angelic, yet quivering. The pianist is superb, his every note perfect. I hear the sound of bagpipes before I see the bagpiper walking up the aisle to the pulpit. Everything is dignified, just as if Stephen had choreographed all this himself. He would have sat here, enjoying the beauty, serenity and elegance of his service. Since 1844 this cemetery has encompassed this little stone chapel, nestled on a hill between its mausoleums and monuments, with the Don River running through its lower grounds. The oak bench I am sitting on is heavily waxed and polished, giving off the heavy smell which accompanies agelessness. I look up at the stained glass windows, the oak and brass pulpit, the stone floor, wondering how many have come before. How many ghosts are dancing on these grounds with almost two hundred years of services honoring our beloveds?

After the closing and the Lord’s Prayer, I am given a long stem red rose and am escorted to the burial plot. The hole is big enough to fit a coffin. My chair is beside it, under a canopy. I sit and look into the hole. The bagpiper continues to walk around the gravesite, around me, while playing. When he is finished the minister resumes and the service finishes off with two angelic voices singing,

Ave Maria,

Gratia plena, Dominus tecum.

Benedicta tu in mulieribus,

Et benedictus, fructus ventris tui, Jesus.

Sancta Maria, sancta Maria, Maria,

Ora pro nobis, nobis peccatoribus,

Nunc et in hora, in hora mortis nostrae.

Amen. Amen.

I stand with the rose in my gloved hand. I walk to the dugout grave, kiss the rose and gently drop it in. Good bye, my love, I silently say to Stephen’s memory. I return to my seat and wait for everyone to leave. I am once again alone with Stephen’s ashes. He is a lot heavier than I thought. I stand up, holding him in both hands as I walk slowly, quietly through the cemetery. I don’t know how much time passes, as another funeral service is commencing. I place Stephen on the front passenger seat of my car and drive home.

CHAPTER 2

It is May 13, 2015. I woke up this morning to hear Stephen snoring all too loudly. I open his bedroom door, look in, and think, I better not wake him. Let him sleep. I can’t take his screaming. He snores for the next twenty-four hours. I don’t want to wake him. My aunt calls to check in on me. She asks about Stephen. I explain he’s still sleeping. I’m not sure, but it must be twenty- four hours, maybe a little more, I tell her. I’m too tired, too worn out to understand the significance of someone not waking up for this length of time. She insists I call 911. I don’t believe it’s necessary. He’s sleeping longer and longer all the time, I rationalize. I pray one day I’ll open his door and he will be dead. I so pray for this.

She insists I call the ambulance and let them decide. If Stephen were conscious, he would forbid it. Every time the ambulance came and revived him, he refused medical treatment. He refused to go with them. Each time there was a lot of arguing, yelling and threatening. It’s easier if I just let him sleep and snore. If lucky, he won’t ever wake up, I think.

I dial 911. It’s not an emergency at all. My aunt insists I call you. My husband is sleeping. He’s breathing, snoring like a helicopter. He’s been asleep for maybe twenty-four, thirty hours. I’m not sure. You don’t have to come. I’m just letting you know, as my aunt asked me to call. Every time you came, and woke him up, he was very angry and wouldn’t go with you.

The voice on the other end of the line says, "Not to worry. What is your address? Your name? Phone number? We’ll be over in two minutes. Please stay on the phone."

While holding the phone to my ear, I hear the door bell. They must have been waiting outside my house, waiting for my call, I think. Nonsense. I let the two men in. They are the same two men who have been here countless times in the last eight months. The older man gently smiles as if to reassure me, asking, "Mrs. Hanson, where is your husband now?"

Last time they came he was on the kitchen floor surrounded by broken dishes. The time before that he was in the family room in his La-Z-Boy chair lying down with wide open eyes staring up and nonresponsive. The time before that … I can’t remember as there have been far too many times.

They walk upstairs with their medical bags. I show them to the master bedroom. They turn on the overhead light, a crystal chandelier. They gently shake Stephen, asking, "Mr. Hanson wake up. Can you understand us?"

As he is unresponsive once again, they open his eye lids. I am standing next to them, almost behind them, watching everything. Stephen’s eyes are facing upwards. The older paramedic immediately contacts the hospital while the younger goes to the ambulance to get an ambulatory chair carrier. Hastily they bundle Stephen up with their blankets, tie him to the seating stretcher and whisk him away. They ask me to follow in my car. They are more visibly concerned this time. I am slowing beginning to realize this isn’t like all the other times.

I dress and drive myself to our hospital, walking straight through to emergency. I can navigate this area by memory as it’s been too many times. I hear screaming. It sounds like someone is being vivisected. I follow the screams, recognizing the voice. Stephen is in a bed, reclined in a partially upright position and secured so that he does not fall over. His eyes are unfocussed, appearing glazed, starring upwards towards the ceiling. His mouth is wide open. He appears to be in delirium; I fear that this time it is something much worse, as this is different from all the other episodes. I walk over to his bed. The station nurses watching him are now also watching me. I touch his hand, then his face, as I try to calm him down. He does not hear my voice. His screams are both deafening and endless. A doctor comes over to us and asks, "Mrs. Hanson? How long has he been like this?"

"He has never been like this. Ever. Can you give him something to quiet him?" I ask.

"No. Not until the blood workup comes back for us to see what he has in his system" the emergency room doctor replies.

"He was discharged from here seventeen days ago. Please refer to your records. He is taking all the meds you already have on file. There is nothing else. In addition, the day he was discharged, I took him to his psychiatrist and emailed his pain specialist with your list of meds to make sure there would be no drug interactions or ill side effects. Both doctors approved your hospital meds. Now please give him something." I beg them as I am becoming more concerned.

"We need to wait to make sure before we can prescribe anything or do anything."

"That’s nonsense. He was snoring loudly at home, but not screaming. You gave him something to cause this. Did anyone administer Narcan or Naloxone to wake him up when he arrived? If so inject him with Dilaudid immediately. As you know from your previous charts he’s been on heavy doses for over a decade. Without it he’ll go in to shock and have seizures resulting in further brain damage. He’s in severe withdrawal. Can’t you see it?"

"We can’t give him anything until his drug screen arrives."

"Garbage!" I say too loudly, too aggressively, as he appears not to be understanding what is happening to Stephen. He’s been sleeping and snoring for twenty-four or thirty hours before the ambulance showed up. If he had anything in his system, it would have already metabolized. Don’t you understand the significance of this? Your drug tests are too late. It will be too late for him by the time you are ready to help. You don’t want his blood pressure going off the charts. His biggest fear has always been brain damage resulting from severe withdrawal. Please don’t do this. You have to medicate him correctly and properly now!

"Are you a physician?" he asks, obviously losing his patience with me.

"NO BUT… I blurt out, then pause, take a deep breath and rethink before answering. No. But I’ve memorized all Stephen’s nuances, motions, everything about him to know how he is feeling. I’ve been around him twenty-four hours a day, seven days a week for years. I’ve memorized his drug regimen. I can look at him and know if he is over medicated, under medicated, or how he is feeling without him saying a word. I can’t explain it. Stephen has been on pain management opiates for over fifteen years, with the dosages increasing each year. We both know the symptoms as well as the side effects. This wasn’t an opiate overdose. Check your discharge records from seventeen days ago. He has FTD (frontotemporal dementia). He was just here for over a month. You people rebooted his brain which you are now destroying. Just give him a Dilaudid drip and he’ll quiet down. You’re unnecessarily and irreversibly harming him."

If I could take this conversation back, I would. I would give anything to take back this one interaction with the emergency room doctor. I’ve learned not tell doctors what to do under any circumstances, the hard way. They don’t want to hear it and, in the worse possible scenario, may do the exact opposite, from an unconscious maliciousness. Never contradict or second guess a doctor. Never! If Stephen would go into severe withdrawal, shock and die, that would be preferable. That would be his choice and mine; it would be the most desirable outcome for everyone. But to have him suffer needlessly, be worse off; lose more brain function, only to be sent home a lesser self would be disastrous beyond measure. For the time being this might be preventable, but not for long, if at all. For years Stephen trusted me to campaign for him. Somehow even with FTD he still managed to interact with all his specialists at their level. His brilliance remained astonishing. It seemed his brain kept rewiring itself, finding new synopsis, new pathways, so he could appear to function. No one knew this was end stage dementia, not even Stephen or I.

Three months ago Stephen was telling his surgeons what procedures he needed, correctly self diagnosing himself. Right up to his last prescription refill, he was reviewing and catching their drug interactions. He was on countless pain medications, both narcotic and non narcotic, as well as neuropathic pain meds in addition to three different diabetic drugs and five blood pressure ones. I convinced him to discontinue his cholesterol meds explaining the cure was worse than the disease, as he was having intramuscular and tendon spasms. This was the only time he listened to me, but, only after satisfying himself with sufficient research of his own. His doctors disagreed with us saying he would have a stroke or a heart attack in the future without these. I reasoned, who cares about a distant future, when we barely survive the present?

I have been strong for him. I have looked after him, done everything for him. But now, at the end, I am failing him. Today I had no clue what was to come. Had I known, had I been able to glimpse into the immediate future, I would not have dialed 911. I would have let him die in his bed and save him the next thirty-five days of unrelenting torture.

I did not know. I had no way of knowing. No one could or would foretell what was to follow.

CHAPTER 3

Stephen remained in his bed, in a corner, cordoned off from the other ER patients for the next three days. After two days his screaming somewhat subsided after he was finally placed on an IV drip so that all his medications could be administered intravenously. He had a catheter bag along with being hooked up to the nurses monitoring station. During these days I came and went frequently as I could no longer stand his ceaseless screaming. It was too disturbing.

However competent I may have been, however strong, I was beginning to crack. Stephen was all too consuming for me or anyone around me to notice signs of PTSD emerging.

I called our son to let him know daddy was in emergency again. He called the hospital and spoke with the physicians in charge. At this time Alex was twenty-five years old and finishing his medical degree in Kansas City. Within hours of my talking to him, he advised me he was catching a flight back to Toronto, to be with us. What he failed to tell me was that after our phone call the doctors at his school advised him to go home immediately so that he would not miss saying goodbye to his father. I learned of this six months after Stephen’s death. Alex was coming home to be with his dad one last time, who’s life expectancy was hours, perhaps days at the most, which was not shared with me.

Another MRI of his brain was ordered revealing Stephen’s brain was losing visible mass. Where he had had brain tissue, he now had empty space. As his brain was dying it was being absorbed. Looking back it all makes sense. Stephen first freezing for seconds, the seconds becoming minutes then hours. Stephen not recognizing faces, sentences or words, the strange visions, then sudden normalcy. All of it is now fitting together, after it is too late and after too much damage has been done to us. If only we had known sooner, we would have done things differently. If only.

When Stephen was admitted on May 13, 2015 I believed he would be home within two weeks. I believed this because no matter what was happening to him, he always surprised everyone and survived. Previously, when at death’s door, at the point of no return, he would wake up and appear to function. I believed he was too strong to die, no matter what. This belief created an incredible fear in me. At times I would wonder how long I could take it. How much longer could I survive keeping it all together for both of us? It was a double edged sword with no reprieve in sight.

Alex took a taxi straight to the hospital from the airport. He called me to let me know he landed. I remember going outside to wait for him in front of the emergency entrance.

He walks towards me, trying hard to hide his concern. I too am trying my best to make the situation appear less serious. He hugs me, holding back his tears. His voice is trembling, his eyes are moist. We go directly to the ER nurse’s station.