Me, My Mother, and Alzheimer’S Disease

Copyright © 2014 by Janet O’Connell.

ISBN:                  Softcover                           978-1-4931-4149-4

                            eBook                                978-1-4931-4150-0

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: 02/24/2014

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Contents

Dedication

In Appreciation of Lee Summers

Acknowledgements

Introduction

Part I

What is my purpose on earth?

Part II

Dianne and Depression

Sensing Something Is Happening to Dianne

Early signs of Alzheimer’s disease

Arrival

Shadowing

Deterioration

December 2010

Convincing brothers

June 2011

The Assessment and Formal Diagnosis

Recommendations

Informing my siblings of Dianne’s diagnosis

25 June 2011 onwards

Follow-up visit to psychiatrist

Discussions about admitting Dianne into a Caring Facility

Searching for a suitable caring facility

Preparing for Dianne’s admission

Admitting Dianne into the caring facility

11 September 2011

12 September 2011

During the day

Evening

13 September 2011

14 September 2011

Packing up Dianne’s House

Unsuccessful to re-establish meaningful communication amongst the family

Dianne changes her will

Dianne in the Caring Facility

Dianne’s second follow-up visit with the psychiatrist

Issues around Dianne’s second House

Part III

Impact of Dianne’s Illness on Her and on Her Loved Ones

Part IV

Following My Inner Voice

Missing Piece

Searching for Integration and Resolution

Reprogramming my subconscious mind

Journey of healing

Understanding and forgiveness

Beginning of a new phase in my life

Dianne continues her journey of unforgiveness

Part V

Dianne’s End-of-Life Journey

Part VI

Alzheimer’s Disease: Helpful Tips for Families

1.   What is Alzheimer’s disease?

2.   What to do if you suspect your loved one is showing early signs of Alzheimer’s disease?

Prepare early: seek financial and legal advice

When you get a formal diagnosis, plan for the future

Financial affairs

Last will and testament

3.   The stages of Alzheimer’s disease

4.   What a Family Can Do to Cope with a Loved One’s Alzheimer’s disease

Get help and support

Taking care of yourself

Make time for yourself

Accept your emotions

Keep a daily journal to record and reflect on your experiences

Know when to make a change

Choose a caregiving situation

5.   Impact of Alzheimer’s disease on family, children, friends, and caregivers

Guilt feelings

Grief and loss

Anger

Children and teens

Caregivers

6.   Impact of Alzheimer’s disease on family relationships

7.   Caring for your loved one at home

Keeping your loved one safe

Organise a safe living space

Reduce clutter

Secure stoves and appliances

Remove hazards

Prevent driving

Control wandering behaviour

Communication and behaviour

Strategies for improving communication

Avoid arguing about reality

Reassurance

Use distraction

Try statements, not questions

Coping with personality changes

8.   Undertaking end-of-life care of a loved one

9.   Caregiving in the final stages of Alzheimer’s disease

10.   Caring at the end-of-life stage

Managing pain

Connecting and loving

Coping with grief and loss as a late stage caregiver

11.   Moving on after final-stage care

Reconnect

Use your loss

Gain perspective

Conclusion

Resources for primary and non-primary caregivers

Further Reading

References

Dedication

I lovingly dedicate Me, My Mother, and Alzheimer’s disease to all daughters who suffer the hurt of being emotionally and physically abused by their mothers and deal with the challenging journey of her suffering from Alzheimer’s disease.

In Appreciation of Lee Summers

A lthough this is not an academic publishing paper, but since it was my first attempt to write a book on my own, I was fully aware that like research, although the first drafts would be incomplete, I could always revise it as I progressed. Consequently, it was a slow process of moving forwards and backwards. And, indeed, for nine years, it was moving backwards and forwards. I approached various publishers. After exploring all available publishing companies, I emailed the company in 2013. Lee Summers requested that I must tell him more about my book, which I did. He immediately understood and grasped what I was attempting to do. I made up my mind that this company satisfied my needs, and he was allocated to support me in the journey to publish my story. I was swamped with work, but Lee was prepared to wait. He was amazingly supportive throughout this journey. Whenever I needed assistance, or had some queries, he would always make time to assist me.

Soon after I was finished with the story, I made the lengthy manuscript I had prepared over the years accessible to the publishing company. Lee reassured me that his company would assist me in converting the story into a well-structured and finally refined product. Reflecting back, even though the writing of Me, My Mother, and Alzheimer’s disease becomes a private shared world, the publishing company’s assistance and critique was useful and productive. In short, the crux of my achievement was the fact that since both Lee and I are motivated persons, we managed that the narrative ended up as a shared adventure.

Acknowledgements

D uring the writing of this book, I had to rely on many resources. I laboriously had to scrutinise the piles of notes—the journal I kept over the years. I approached my friends and family members who encouraged me with unfailing enthusiasm.

Sine gave her motivational slogan in 2004 when she said, ‘Everyone in life has the right to be loved and cared for, and nobody has the right to abuse that right.’

My deepest appreciation goes to Elaine, who graciously guided me through the years with love and emotional support. Our friendship has deeply enriched my life. When I am down, she lifts me up, and when I achieve success, she is sincerely proud of my achievements. Because of her unconditional support and intellectual contribution, I was inspired to complete this challenging journey.

To all my friends, I thank you for always being there when I needed you the most.

To all those who look after Dianne in the caring facilities, I would like to say thank you!

They deserve awards for just being there at all.

Deep love and appreciation goes to the two very special people in my life, my husband and my child. They had endless patience with my procrastination. They created the personal space for me to complete this book over the past nine years, and for that I am extremely thankful.

Also, many thanks to Philip and Xlibris for assisting with the editing, publishing, and marketing of this book.

Finally, one last message of thanks is due to my mother, Dianne. I would be negligent if I failed to acknowledge that she is the reason for and the motivation behind this book and that this book is, in large part, a testament to how much I love and care about her.

Introduction

O riginally, the book centred on the poor relationship between me and Dianne, but when I got the uneasy feeling that something is disturbing on the horizon, I thought now is the right time to continue writing the book, which I started at the end of 2004.

While getting to grips with the skills to write a story, I believed the power was in me to expand my thoughts to unravel the obscurity of ‘me, my mother, and Alzheimer’s disease’. This meant I had to undertake a journey. But what did that mean to me? It meant my journey had to unravel the puzzle pieces and allow my thoughts to flow freely to confront all the disturbing questions which were stuck in my subconscious over the years. However, this was not easy, and many evenings, when I sat in front of the computer alone with my thoughts, I realised I had no option but to deal with the pain in front of me and stroll right through it. This is not a fairy tale; each part of the story is based on my experience, so once you start reading it, it may send waves down your spine. To find the answers to these questions, I had to continue with my journey to try and find the missing puzzle pieces. However, in order to fully understand what is really going on behind my story, you have to prepare yourself psychologically and become a part of my journey.

The purpose of writing this book is twofold: Firstly, the story of Me, My Mother, and Alzheimer’s Disease is meant to unravel the mystery of what it meant to be abused by my mother and others and how a diagnosis of Alzheimer’s disease let my hopes and dreams of a mother’s love shrink forever. Secondly, the story of Dianne is a typical reflection of everything you need to know about a person suffering from Alzheimer’s disease—in other words what Alzheimer’s disease is like from the inside—the many changes, challenges, and conflicts the individual, children, family, and friends have to face during the unpleasant journey which rips their loved one away.

In this book, there is a great deal of thought and bad memories. Therefore, it is divided in six parts. In part one of the story, I invite you to listen to how I unravelled the many questions that I have been grappling with over the years: Who am I? Why am I on earth? And the tragedy of being emotionally and physically abused by my mother and sexually abused by a stranger. In part two, I will tell you about my mom and Alzheimer’s disease, and in part three, I will tell you how her disease affected us as a family. In part four, I will describe the process of understanding and forgiveness, in part five, I will describe Diane’s end of life journey and in part six, some constructive recommendations and guidelines are presented for children on how to understand and cope with their loved one’s illness. This is my story which I have put together from my past and present ‘lived’ experience, memories of ‘me, my mother, and Alzheimer’s disease’.

Because of the intensity of the story, do not even try to take it in all at once—once you start reading it, it may send shivers down your spine. Some of you might found that your life’s journey is totally different from mine, while some facts will jump at you. Focus on this first. If you found that you disagree with some, just overlook it, but if you get one exceptional thought out of this story which you will find useful, I will feel satisfied. Because the power is within you, I would like to encourage you that if you want to find inner peace and joy in your life, you have to start speaking out because keeping quiet can affect your entire life and ultimately ruin the relationship between you and your mother or loved one forever. Although breaking the silence was difficult for me, it is my heartfelt wish that the stories and wishes in this book will inspire, touch, and motivate children and parents to think deeply, to ask God to give them the strength to accept and forgive each other for everything they judge each other for—before it is too late.

Part I

What is my purpose on earth?

I am Janet , the only daughter of Dianne and Arthur. I am fifty-six years old and I have three male siblings: Elvis (54), Ryan (52), and David (49). We all grew up in a farming community.

Who you are in life can be greatly determined by where you come from, the environment in which you grew up, and how you are coping with your circumstances. For the largest part of my life, I grappled with the following questions: ‘Why was I put on earth?’ and ‘Why was I not loved by my mother?’

To be honest, I do not know where to begin my story. I was always reminded that I was not supposed to be there. The reason given to me by my parents was that they had wanted a son as their firstborn. In my family, it was very important for the firstborn to be a boy to continue the family name. Because Dianne, my mom, put her husband on a pedestal, she firmly believed that she had to adhere to his wishes and demands. But this did not happen, and Diane was deeply disappointed because she had failed to meet the family’s high expectations. Consequently, Dianne and I never had a good mother-daughter relationship. My childhood was filled with disrespect and violence. I had a mom who smacked me regularly in the face with either her fist or anything that she could reach for and spoke to me and treated me in a demeaning manner.

What must I conclude from this fact? To be honest, I don’t know the answer. A possible explanation for Dianne’s extreme bitterness towards me, her refusal to accept me as a person, was her disappointment in failing my father and his parents.

At the age of six, I started attending school, and I was astounded that my friends’ mothers said so many nice things to them and gave them hugs and smiles. They told Dianne how proud they were of them, something that I could only dream of. It was then that I realised that the way I was treated was not normal.

When I asked her why I was treated differently, she would respond in anger with no explanation. This caused a lot of hurt and anger between us. Consequently, I developed certain coping mechanisms to deal with my pain and emotions. I started to isolate myself from my family and spent most of my time in my room. In an attempt to make sense of it all, I started to keep a diary from a very young age. This was my way of escaping reality. I would write down everything that happened to me, including the bad encounters between Dianne and me over the years. When I moved from one place to another, the boxes with my diaries moved with me. When I read my notes, I would relive the smacks on my face that I had to endure.

I was an average scholar. I always tried my best, and apart from obtaining good marks for domestic science in high school, I never achieved outstanding results or performed well in any other subject. Nor was I one of the teachers’ pets or one of the powerful athletes or a good singer like some of my classmates. Even when I did something good, whether it was at school or at home, in Dianne’s eyes it was never good enough. She would still find fault, and that was really hurtful and painful.

At school, the children always referred to me as the ‘disorganised’ girl, but if only they knew the reason for my behaviour! It was my way of dealing with my pain. I just had to be in a rush all the time. Then nobody could bombard me with questions regarding why I withdrew from them or why I acted so strangely.

I still remember the times when my younger brothers did something wrong, but all of us would be sent to the bathroom to wait for my dad. Sometimes we had to wait there for more than six hours. When my dad arrived, my mom would the one who took out the belt and told us to come out of the bathroom. We would be called one by one and my brothers would be the first to get a hiding. While I waited my turn, I would hope that my father would get tired. I quickly realised that I was wrong. When it would be my turn, Dianne and Arthur would have cold, staring faces, and, as usual, they would grab my arm and start hitting me. I always thought how it was possible that parents could be so cruel towards a child—I didn’t ask to be there!

One day, I asked my mom and dad, ‘Why is it that I am getting more hidings than my brothers and for no reason?’ They were so angry that both of them started hitting and smacking me again. Because they were convinced I had done something wrong, they told me how bad I was and that I was a bad influence on my brothers. So almost every night, I cried my heart out and asked Jesus to take me away. Sometimes I would be badly bruised and I had to go to school with a swollen face.

Although it was hard to oppress my emotions, I said to myself, ‘I am going to be strong.’ I will never forget the times when people asked me questions: ‘Why have you been so different the past few months and what is this mark on your skin (face and arms)?’ I had to tell the kids at school that I had fallen from a stack of bags in the garage. Although people couldn’t see the scars of emotional abuse, there were those few who always asked me, ‘Why are you looking so sad?’ If they only knew what I was going through and the ugly words Dianne said to me! They didn’t know, however, because I always said that nothing was wrong. As I was accepted and loved by my friends and certain teachers, I was scared that if they found out about the abuse at home, they would also reject me.

As if I had not endured enough abuse by Dianne, from the age of seven up till eleven years, I was sexually abused by one of the workers on the farm. He was at that time in his early