Walks Through Heaven with Dad: a Young Man's Experience with Lewy Body Dementia

Walks through Heaven with Dad:

A Young Man’s Experience with Lewy Body Dementia

Daniel John Woytowich

Copyright © 2015 Daniel John Woytowich.

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 publisher except in the case of brief quotations embodied in critical articles and reviews.

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ISBN: 978-1-4908-6024-4 (sc)

ISBN: 978-1-4908-6025-1 (e)

Library of Congress Control Number: 2014920534

WestBow Press rev. date: 06/25/2015

Contents

Introduction

1

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16

17

18

19

References

About the Author

For what it’s worth, this book is dedicated to

my mom, dad, sister, and brother,

who are my heroes.

I would also like to sincerely thank all of the wonderful staff from the Life Geisinger outreach clinic in Kulpmont, PA who were and are always incredibly nice and helpful to my father.

As we, or mother Dana, weave and unweave our bodies, Stephen said, from day to day, their molecules shuttled to and fro, so does the artist weave and unweave his image. And as the mole on my right breast is where it was when I was born, though all my body has been woven of new stuff time after time, so through the ghost of the unquiet father the image of the unloving son looks forth. In the intense instant of imagination, when the mind, Shelley says, is a fading coal, that which I was is that which I am and that which in possibility I may come to be. So in the future, the sister of the past, I may see myself as I sit here now but by reflection from that which then I shall be.

—Excerpt from Ulysses, by James Joyce, 1922 ¹

Introduction

I’m the son of a man with Lewy body dementia. My dad’s name is John, and he is one the best people I have ever known or will ever know. He told me that he wanted me to use his story in an effort to help others, so that’s what I’m doing.

There are a few great care guides and memoirs out now on Lewy body dementia, however most of them are written by spouses of people with the condition or medical professionals that work with dementia patients. These viewpoints of the disease are invaluable and probably more necessary for people to hear than the viewpoint I have on it. However, I do think my perspective into Lewy body dementia is unique. My dad was diagnosed with Lewy body dementia when I was twenty years old. I’m currently twenty-seven, and he is still living with the disease.

I feel that there hasn’t been much of a voice out there speaking for the young men and women who are sons and daughters of people with early onset dementias or other terminal illnesses. There are many college students, graduate students, young professionals, and other people at the beginning of their adult lives who are dealing with parents with terminal illness. The number of young people dealing with issues like these will only increase as couples are choosing to have their children later and later in life. When I was born, my mom was thirty-eight and my dad was forty-two. In 1986, this wasn’t necessarily the norm, but if a couple of that age told you that they were having a child nowadays, no one would question the decision. I am also a third-year medical school student and therefore can write this book as someone who is currently being educated on the art and science of proper healthcare; however, this book is not meant to be scientific literature. I will give necessary background information when needed, but this is not a reference book on Lewy body dementia. Many people out there are more qualified than I to write about that, and many of those people have already done so.

This book is a memoir of my experiences as a person in his twenties who is still trying to figure his life out and who has lived nearly a third of that life with a father that has a terminal illness. It’s about a boy who essentially grew to be a man under the watchful gaze of Lewy body dementia. After my father was diagnosed, I finished two more years of undergraduate work, took the Medical College Admission Test, applied to medical school, worked, did medical research, and volunteered in many places doing many different things. I eventually began medical school, and that’s where I still am today. I don’t say any of that to boast. I say it because the framework of the experiences that I just explained can be applied to any young professional or student. Every young person in today’s world does what I just described in one way or another. In the college years and post-graduate years, we have to find our way, discover who we are, discover who we want to be, discover our passions and our goals. In short we have to discover our own life. This is hard enough, as anyone knows, but it’s even more daunting when you have a parent with a debilitating illness.

It’s different being the twenty-year-old son of a father with dementia than it is being the seventy-year-old spouse of someone with dementia. Neither situation is enviable in any way, but they are indeed different. So many thoughts and questions run through a young person’s mind when his or her parent is diagnosed with a terminal illness.

Should I go back to school?

Should I delay school and go live at home to help with Mom?

Should I take out another loan so I’ll have enough money to support Dad and pay for tuition too?

Should I take that job? It’s a great opportunity and my dream, but it will mean being five hours away from Mom. What if she falls one night and needs me?

My boyfriend wants to get married and have kids, but how can I do that? My parents are only going to get worse and need more of my time. I may even need to move in with them.

I’m signed up for the LSAT next month but is now really the right time? I can’t study when I know Dad is in the hospital. This is what he would want me to do, but I can’t. Or should I? Do I even want to go to law school?

What if my father passes away two weeks before the board exam? How could I take it? But how can I put off my medical education and my life in general anymore?

They are not easy questions to answer, and there’s no time to ponder them because once that person arrives home, the switch has been thrown. He or she is now a full-time caregiver. He or she is now living for someone else. Decisions have to be put off; life has to be put on hold. School, work, girlfriends, boyfriends, fiancés have to wait. Putting life on hold when you’re sixty is one thing; putting life on hold when you’re twenty-two and you have no idea where you’re going is another thing. No easier, no harder, just different.

I hope that my story can be a support to people as they progress through their journeys with a loved one that has a terminal illness. This book can serve as insight specifically into Lewy body dementia for anyone curious about it; whether it be a spouse or child of someone with the disease or a medical student that wants to go into geriatric care or neurology and would like to read an account of how dementia affects patients’ families on a more personal level. I also want to raise awareness and hope this book will even spurn the curiosity of people who aren’t immediately dealing with terminal illness or working in the medical field. Much of this book isn’t even about Lewy body dementia but rather is about my relationship with my father and how it has changed over the years. It’s about our father-son connection and my changing perceptions of that connection as I progressed through the confusion of my twenties. Therefore, I also think this book can be a support to people who may not be interested in dementia at all, but rather are more interested in reading about another person’s evolving relationship with someone he or she is very close to.

As a bit of a side note, I apologize in advance if some of the frustrations or regrets I express get redundant at times. However, this was a period in my life in which I was angry. If any grievances tend to be repeated a few times, it is reflective of the fact that these are issues I ruminated about often. I wanted to keep the book as honest as possible, which to me included being open about the frequency with which certain thoughts ran through my head.

I believe we grow the most by accepting invitations into other peoples’ lives and experiences. I invite you into what has been a major part of my life for