All Will Be Well: A Memoir of Love and Dementia

By Kim Fowler

2023 National Indie Excellence Awards Finalist

All Will Be Well is not just a book about a daughter suddenly finding herself becoming a caregiver for her mother. This is not just a book about the way life is upended for everyone in a family when a tragedy unexpectedly strikes. And it is not just about

• Language: English
• Publisher: Lizardsong Press
• Release date: Jul 23, 2022
• ISBN: 9798986524214

Kim Fowler

Kim Fowler has spent over 30 years in the design, development, and project management of medical, military, and satellite equipment. His interest is the rigorous development of diverse, mission-critical, embedded systems. Kim co-founded Stimsoft, a medical products company, in 1998 and sold it in 2003. He has also worked for JHU/APL designing embedded systems, for a company now part of Curtiss-Wright Embedded Computing that built digital signal processing boards, and consulted for both commercial companies and government agencies. Kim is a Fellow of the IEEE and lectures internationally on systems engineering and developing real-time embedded products. He has been President of the IEEE Instrumentation & Measurement society and an adjunct professor for the Johns Hopkins University Engineering Professional Program. He has published widely and has written three textbooks - this book is his fourth. He has 18 patents - granted, pending, or disclosed. Kim currently is a graduate student in Electrical and Computer Engineering at Kansas State University to finally get his PhD to teach and research.

Book preview

All Will Be Well

All Will Be Well

A Memoir of Love and Dementia

Kim Fowler

Lizardsong Press

New Edition of All Will Be Well

Copyright © 2022 by Kim Fowler

Original edition

Copyright © 2016 by Kim Fowler

Published by Lizardsong Press in 2016

All rights reserved. No part of this publication may be reproduced, stored, or transmitted in any form or by any means without written permission of the publisher or author, except in the case of brief quotations used in a review.

Some names and identifying details have been changed to protect the privacy of individuals.

Published by Lizardsong Press

For more information or to contact the author, visit www.kimfowlerauthor.com.

ISBN (paperback): 979-8-9865242-0-7

ISBN (ebook): 979-8-9865242-1-4

Editors: Mary Reynolds Thompson and Sheridan McCarthy

Book design: Christy Day, Constellation Book Services

Photo of the author, pg. 166: Alissa Petrosoniak

Other photos courtesy of the author

Book cover photo restoration: Jason Rose of Rose Restorations, Berkeley, CA

All shall be well, and all shall be well,

and all manner of thing shall be well.

— Julian of Norwich,

Revelations of Divine Love

Contents

Prologue

1. The Night the Earth Stood Still

2. Topsy-Turvy

3. Mom

4. The Revelation

5. The Fowlers

6. Rehab

7. D Is for Denial

8. Yvonne and Guy

9. Journal Entry #1

10. The Healing Piano

11. Journal Entry #2

12. A Letter from Mom

13. Journal Entry #3

14. The Back Porch

Photo Album

15. Journal Entry #4

16. Mrs. Clark

17. The Best of Times

18. Journal Entry #5

19. On Shaky Ground

20. Journal Entry #6

21. The Apology

22. The Last Family Christmas

23. Dad’s Death

24. Grieving

25. Cleanup Woman

26. Still Mourning

27. The New Normal

28. The Road to Inevitable

29. Mom’s Death

30. The Final Chapter

Epilogue

For the Reader

Forgiveness

Committing to Yourself while You Are Committed to Your Loved One

Acknowledgements

About the Author

Prologue

Loss Is An Unpredictable Thing

Sudden loss is different from a fast fade. Sudden loss is savage. It grabs you by the heart and tears at you like a hungry buzzard. It eats at you until there is nothing left but bone and then releases you into a tumult of grief. There, you nearly drown in depths you never imagined you could survive—but you do. You are pulled ashore by memory, which creates a way for you to walk back to the beginning and create a new territory of life without your loved one as you knew them. Here, the colors are different; the light is muted or sharper. Here the flora and fauna of love and simple relationship take new form. Here the mundane is magical and the unimaginable is routine.

It is here where you discover that all will be well, a truth that my mother held even in the darkest of hours. It was the first thing she said when I fell while ice skating in eighth grade and had to be on crutches for two months while my ligaments healed. It was what she said when I realized I had to take a leave from school because I was failing my classes. It was what she told me when one and then another of my closest friends were diagnosed HIV positive and told they could die.

It was what I tried to remember in the predawn hours of November 15, 1999, when my father called to tell me she had suffered a stroke and was in surgery. It was at the core of the next twelve years of my life with her slowly devolving body. All will be well was fundamental to being willing to be surprised by the new relationship that emerged with my father when our family roles were reversed. Dad no longer had a wife; rather, he had gained an aging child to care for. I exchanged my role as child of both my parents for one as co-caregiver and parent with my father. Power dynamics were topsy-turvy. Dad had to learn to make decisions about Mom’s care with me, and I with him. Many times, old perceptions and wounds blocked the evolution of our partnership. When we could forgive or move them aside, we redefined respect and love for one another.

I know now that I believe in the resilience of families and the reconstruction of life that is possible in the face of catastrophic loss. Even though my mother’s body did not die from the stroke, a huge piece of her was suddenly erased, like footprints rubbed from the shore by a quick tide. And yet, an essential piece remained. Her joy, her love of natural beauty, and her delight in music stayed with her until the end. They were less robust but never lost their depth. When I sat with her on Sunday afternoons in the Lake Merritt botanical gardens and asked if she liked being near the waterfall and the ducks and the cedar trees, she often replied with an emphatic "Mmhmm." That told me that despite losing her words and physical movement, the Mom I loved was still there.

I hope this book serves as a companion as you travel your own road of loss, of redefining relationships, of redefining yourself in the midst of disruption or tragedy. I hope it offers the possibility of surprise, resourcefulness, and deep delight in the newness that emerges through plummeting into the abyss of that loss and journeying back with your eyes focused on the stars.

Chapter 1

The Night the Earth Stood Still

Igot the call at 5 a.m. on November 15. The night before had been the last performance of the week for Greensboro, a theatre piece I was in about the Ku Klux Klan massacre of civil rights workers in Greensboro, North Carolina. I had just received some very nice notices for my singing, and I had crashed hard after a bit too much celebrating.

Who on earth is this? I thought as I dragged myself out of bed and over to the phone. No one I knew could possibly be calling me at this hour. For months I had been getting calls from creditors asking for someone named Romulo Romero, whom I was getting very annoyed with for not paying his bills. Hello? I snarled into the phone.

Kim, it’s Dad.

I snapped to foggy alertness. Something must be terribly wrong for Dad to call before 10 a.m.

Your mother is in the hospital. She had a bleed in her brain. They’re operating on her now. My first thought was, Mom’s in a hospital? She hadn’t set foot in a doctor’s office since her hysterectomy when I was fourteen. She did go to the dentist, a religious concession I never understood. Maybe teeth were beyond the healing powers of Christian Science.

I’ll come home.

You don’t need to do that. We don’t know anything yet, he responded matter-of-factly.

She’s in the hospital. I’m coming home. I was insistent.

Okay. But only if you really want to. It’s not necessary. He sounded tired. He was as unaccustomed to asking for help as I was to offering it.

Even now, with only the dimmest imagining of what Dad was going through, it was not for his sake that I was frantic to get home. I called Southwest and forked over $1,200 for a ticket from Oakland to Chicago (I’m sorry, ma’am, there are no discounts for family emergencies. Only deaths.) and was on a plane by 10 a.m. I endured nail-biting delays and flight attendants rehearsing their stand-up routines. I spent most of the flight staring out the window, in tears. I was terrified for Mom and of the rough murky waters I envisioned swirling around her that I now had to dive into.

It was a dreary November afternoon in Chicago. There were only a couple of hours of daylight left by the time I arrived at the University of Chicago’s Bernard Mitchell Hospital. The lobby was bustling with doctors and released patients and patients-to-be in various states of physical health. The information desk was staffed by an elderly Black woman volunteer who was kind and efficient. She was talking to an obstinate and distraught older Black man who seemed to be focusing his helplessness on her.

Sir, I am very sorry your son is so ill, but either you put that cigarette out or I will put you out.

I was ready to hand off all my fears into her utterly capable hands.

Excuse me, I’m looking for the ICU … near surgery? I said, commanding my body to still the tremors that were slowly radiating through me.

Surgical ICU is on the fourth floor, baby, she said. Her caring tone calmed my breath just enough for me to manage a smile before racing off to the elevators, dread flowing through my veins.

I walked through the hospital, every part of me taut with awareness. Young interns passed through the hallways, moving at a pace between a walk and a jog, focused only on the point before them. Their ignorance of my mother’s plight felt abrasive. Why aren’t you helping her? was my unreasoned thought, because surely by now everyone in the hospital knew that my warm, generous, extraordinary mother was in their midst. Then my eyes caught the anguish of an older woman moving at a much slower pace, perhaps thinking of her husband or child. I almost stopped short at the realization that I had, without agreeing to join, automatically become part of the hospital’s Devastated or Grieving Family Members Club. The hospital was filled with people just like me, in similar states of uncertainty and despair.

The ride up to the fourth floor was interminable. Beaming me there would have been far more efficient. I emerged from the elevator into a waiting room awash in soft teal and rose and wondered when southwestern hues had become emblematic of empathy in medical decor. I pressed the button that gave me entrance into the unit that held my mom.

An ICU is such a stark contrast to a regular hospital ward. It is a pristine, resource-rich environment that lets you exhale, knowing that the person you love is receiving focused, twenty-four-hour care. Whether that person is released or perishes the hospital wants it to be clear, without question, that they received the legally requisite care.

Each room in the surgical ICU had an internal wall of solid glass so you could get a quick glance of your loved one’s status from afar. The floor was quiet except for the hum of equipment, and the syncopated beeping of apparatuses that calibrated a patient’s rate of recovery or decline. Moving colored graphs with flashing numbers spoke for bedridden bodies. The angle and pace of a line, the rising and lowering of numeric values signaled when a family member could breathe or panic; it was both a maddening and comforting permission to be in the company of these life-measuring machines.

Suddenly I heard a patient erupt, "Get the fuck away from me!" I froze. I thought the patients were too drugged up for such outbursts and wondered who was so out of control, unwilling to admit that the voice, if not the words, sounded an awful lot like my mother.

And so it was—or at least someone they said was my mother. She in no way resembled the woman I’d grown up with. Bandages strained to contain her head, which was the size of a casaba melon. The swelling spread her features out in ways that made her look like a fleshy Botero rendering of herself. Sea green IV tubing curled out of her like the tentacles of a mythic monster. She was tied down and struggling like a demon, yelling for someone to Get me the hell out of here!! I had never before heard my mother utter anything stronger than Oh, for John’s sake! an epithet I never understood yet knew conveyed irritation. She had a wrestling hold on the hand of the nurse who was trying to calm her down. She’s awfully strong with that left hand, the nurse smiled through a wince.

Dad stood to her right, scruffy as always in stained slacks and his favorite overworn sweater of muted red and blue plaid. He was silent, not attempting to run the show, not asking excruciatingly detailed questions or making demands. I stared at his sweater for a long moment to avoid being pulled into the helplessness of his face, something I hadn’t seen since he and Mom separated when I was 16. Like then, there was not a glimmer of normality in our family scene. The only way to soothe the terror that rose in my throat was to focus intensely on one point—Mom.

It was as if we were on the set of a dark sci-fi film. I wanted to yell Cut! I wanted to know that as soon as we caught this shot, we could stop acting and go home. I also derived a twisted satisfaction from my mother’s rage, however it was induced. For a moment I thought it was also mine, that we were undoing acquiescence to my father, to her father, to all the men who had silenced us with their own unexpressed pain. I had waited decades for such an outburst, but not at this cost.

Your mother had a hemorrhagic stroke, the nurse said, still trying to wrest herself from Mom’s grip.

A frenzied feral bleed had drowned a vast collection of Mom’s front temporal brain cells, the ones responsible for organizing sensory input and regulating emotional response. How long would its effects last? Could she survive it? Every outburst led to a spike in her blood pressure that alarmed the nurse, and therefore alarmed me.

Then I really took in my father. He stood to Mom’s left, near the head of the bed. He was not close enough to touch her easily, just close enough to be someone who mattered, who should be there. He was stone silent, his face fallen in fatigue. The usual flash of his brown eyes was dulled to a matte finish, yet he held Mom dutifully in his sights—or perhaps he did not know where else to look. His posture, which had curved with age, held all the emotion of the past twenty-four hours in a weighted sag. He was in a situation so completely outside his skill set. And he had no clue how to communicate with this new wife he saw before him.

In that moment, I knew my role. I was to collude with a medical system that was counter to every belief my mother held and that I trusted blindly because I did not know