Alzheimer’S—What They Forget to Tell You: A Personal Journey

By Caron Leid

Although more and more people are being affected by Alzheimer’s disease, there is not enough information surrounding the true daily struggle of the disease. Although parts of this story were extremely difficult to write, and worse to ensure that the moments were captured exactly as they were it really is a personal journey. This is a story to inspire people not to take any moment for granted.
This disease does not only rob a person of their memory, it takes their dignity and independence with it. It is a story of testing someone’s resolve, and realizing that life is truly what you make of it. This story is dedicated to my mother, I love her and I know there are still pieces of her still with me, and that is what I hold on to. I wish I had the information in this book, when my mother was fi rst diagnosed with this horrible disease, but a long with my story, I have put in a lot of
resources that are available to others. It also shows that even though you don’t think that you have strength, you fi nd a way and you don’t give up. I hope my story inspires you, and at least you can use something in this book, whether the disease affects someone you know, or for preventative care.

• Language: English
• Publisher: Xlibris US
• Release date: Mar 17, 2014
• ISBN: 9781493170289

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Copyright © 2014 by Caron Leid.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Rev. date: 03/11/2014

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Contents

Preface

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

Bibliography

Preface

It is estimated that 747,000 Canadians older than sixty-five years have Alzheimer’s disease and related dementias and 280,000 have Alzheimer’s disease. The number of people in Canada with dementia is expected to double to 1.4 million by the year 2038 to over three-fourth million people due to the aging population. It could become even more widespread, over the next thirty years, as Canada’s ten million baby boomers turn sixty-five years old and head straight into the age of highest risk for Alzheimer’s disease (The Alzheimer Society of Canada, 2013)

Currently, 5.3 million Americans have the disease. By the year 2050, it is estimated that between eleven and fifteen million will have the disease. One in eight Americans older than sixty-five years has the disease, which is nearly 10 percent of all grandparents in the United States. Almost half of Americans older than eighty-five years have Alzheimer’s disease or another form of dementia. (Alzheimer’s.org, 2014) In Trinidad and Tobago, in 2010, it was estimated that five thousand people suffer from the disease. It is estimated 35.6 million people worldwide will be living with dementia in 2010. This figure is expected to practically double every twenty years, that is, 65.7 million in 2030 and 115.4 million in 2050. Much of the increase is clearly attributable to increases in the number of people with dementia in low—and middle-income countries (Alzheimer’s Disease International World Report 2012, 2010)

According to Glenn E Smith, PhD, only 5 to 10 percent of people with Alzheimer’s disease develop symptoms before the age of sixty-five years. The development of early-onset Alzheimer’s is known to develop between ages thirty and forty years, but it is very uncommon. It is more common to see someone in his or her fifties who has the disease. It often runs in families. Many people with early-onset Alzheimer’s have a parent or a grandparent who also developed Alzheimer’s at a younger age. A significant proportion of early-onset Alzheimer’s is linked to three genes.

These three genes are different from the APOE gene—the gene that can increase your risk of Alzheimer’s in general. But you can have the APOE gene and never develop Alzheimer’s. Conversely, you can have Alzheimer’s and not have the APOE gene. The genetic path of inheritance is much stronger in early-onset Alzheimer’s. If you have one of those three genes, it would be very unusual for you not to develop Alzheimer’s before the age of sixty-five years. (Smith, 2014)

And here begins my story…

Chapter 1

Challenges are a part of life. I was raised to always have a plan and a contingency plan just in case the plan did not work. My father always told me not to put your eggs in one basket. However, there was no contingency plan for what was about to happen in my life. This wasn’t even part of the original plan, and there was no warning or preparation for what happened. It just did, and that was that; you could either embrace it or not, the choice was yours. It was happening whether you liked it or not, and you would have to deal with it, without a plan, a guide, or an assistance. It was like the power suddenly went out in your house and you had to muddle your way without a flashlight, tripping on things, trying to climb stairs, and shouting for assistance until someone answered. This was just the beginning of the story.

When did this all start? My memory is somewhat challenged myself, and when I say to my friends bear with me, I suffer from pre-Alzheimer’s, they think I am joking. I will give you a bit of background about how it all began. I am the second of two children; my brother is three years older than I am. My mother and father resided in Trinidad, West Indies, at that time; and I lived in Brampton, Ontario. I was pregnant with my son (my only child), so my mother would call frequently and ask, When is this baby going to come? Of course, I thought it was from sheer excitement. I mean, I was her only daughter having her first child, so of course I would tell her the date, and she would be excited, and then I would hang up. This went on monthly (but again, I thought this was just excitement).

I will give you the background of my mom and dad so that you can get a clearer picture. My mother and father met in Trinidad, West Indies. My mother left Trinidad at a young age and went to England to study nursing. My father also left Trinidad and went into the Royal Air Force, and then my mother finished her schooling and became a registered nurse. She and my father were married on June 20, 1965. Because my father was in the air force, they lived at various bases. My brother, Geoffrey Leid, was born in Germany in 1967; and I was born in England in 1969. We all immigrated to Toronto in the early seventies, where my mother and my father made their home. My mother worked for various hospitals in Toronto, Brampton, and Windsor, Ontario. When my father received a secondment position as a manager of an airport in Trinidad in 1979, we all moved there for six years. My mother in the early eighties worked at the Trinidad Hilton, with Dr. Spicer, and then for a clinic.

It was a big cultural shock for both my brother and I as I had just finished grade 5 and my brother finished grade 7. In Trinidad, we had to enter a whole different schooling system as Trinidad uses the British system, where you begin high school at the age of eleven years. So Geoff immediately entered high school at Fatima College, and I went to Dunross Preparatory School. Geoff was in form 1, and I was in standard 4. My father brought us to Trinidad, and my mother stayed behind to help her sister, as she just had a new baby.

There were so many changes. We lived there for six years, and my brother and I considered it our formative years. After my father’s contract was over, we all returned to Brampton in 1985.

My mother worked at Toronto Westin, and my father went back to Lester B. Pearson International Airport, where he was a manager of landside and properties. My mother, due to the shift work, decided to get into occupational health. She was the occupational health nurse at McDonnell Douglas—the Boeing Company. In 1994, my father accepted a position as manager of Piarco International Airport; and both he and my mother moved back to Trinidad, West Indies, for the second time. (This time, I didn’t accompany them.) My mother worked at Mount Hope Hospital in Trinidad and Tobago and was even a private nurse for the president’s wife. Needless to say, she had over thirty years in the nursing field.

To get back to my story, she came to help me with my son in August 2000. Everything seemed to be normal to me; she helped me feed, bathe, and dress my son. I only noticed one thing. I had formula that was concentrated and had asked her to prepare bottles for my son as I had to step out to buy groceries. I came back to find out that she had not mixed the formula and had given my son the concentrated amount. I could not understand how she could have made that mistake. I mean, she was a registered nurse, how is that possible? The worst thing is that when she was confronted about the mistake, she seemed confused. Of course, my mother gave me no indication that she was having problems with her health or that lately she seemed absentminded. Immediately, we went to the doctor as I thought perhaps it was menopause and she needed hormone replacement therapy or something.

We went to the doctor, and he gave my mother a mini-mental exam. I saw her struggle with simple questions. At the end of the exam, the doctor checked his chart and simply stated, You have Alzheimer’s—that is it—not even a buffer question like Have you been having problems with your memory? or Has there been anything traumatic in your life, a death or an illness of a relative? Nothing. He just said, You have Alzheimer’s, and then he looked at me and said things are going to change. I heard the semblance of CAT scan and a piece of paper, also a prescription for Aricept, and he will get back to me with this new (and loosely, as I called it) drug called Reminyl. (I will get into that at a later time.)

I remember being numb. I remember walking out of there with my mother not really understanding what was happening, and here I am at thirty years of age with a newborn and a mother who has this thing called Alzheimer’s. I did not even really know what it was. At that time, I just remember nodding and saying okay and thinking that maybe it wasn’t so serious. When I got home, I looked Alzheimer’s up on the Internet; and when I read no cure, I started to get scared. No cure? What are they talking about? It also was hard because my mother was weeping and in disbelief. She kept saying, Who has this Alzheimer’s disease?

Alzheimer’s disease is the most common form of dementia G.jpg , a group of disorders that impairs mental functioning. (Dementia G.jpg literally means loss of mentation or thinking.) At the moment, Alzheimer’s is progressive and irreversible. Abnormal changes in the brain worsen over time, eventually interfering with many aspects of brain function. Memory loss is one of the earliest symptoms, along with gradual decline of