Dignifying Dementia

Published by OAK TREE PRESS, 19 Rutland Street, Cork, Ireland
www.oaktreepress.com
www.dignifyingdementia.com

© 2011 Elizabeth Tierney

A catalogue record of this book is available from the British Library.

ISBN 978 1 904887 70 6 (ePub)
ISBN 978 1 904887 71 3 (Kindle)
ISBN 978 1 904887 72 0 (Paperback)
ISBN 978 1 904887 88 1 (Hardback)

All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, including photocopying and recording, without written permission of the publisher. Such written permission must also be obtained before any part of this publication is stored in a retrieval system of any nature. Requests for permission should be directed to Oak Tree Press, 19 Rutland Street, Cork, Ireland or [email protected].

This is a true story. However, the names and / or personal details of some of the people mentioned have been changed to protect their privacy.

DIGNIFYING DEMENTIA
is a powerful, beautifully written account of the author's nine-year battle to care for her husband, a sufferer of Lewy Body Dementia, at home, in the face of a less than supportive medical establishment. Elizabeth Tierney's book is moving, harrowing, fascinating and instructive. It is also the story of one woman's determination to honor her husband's humanity and how she succeeded against all odds – a triumphant love story.

Victoria Williams

This deeply personal saga is a memoir of love and almost impossible dedication, a true-to-life guide for those fated into the caregivers' league. It is a guide none of us wishes to need, but a comforting resource in a time of crisis.

Harriett Hilton, Ed.D.

Elizabeth takes you into the depths of care giving and into the meaning of love.

Elaine Winter

I lost my mother to dementia. I had to find a way to accept her condition, her failure to know who I was at times and the realization that she would pass from this life in a state of confusion and terror with no peace. Dr. Tierney's story and expression of love that defies the inhumanity of this illness offers us all that voice.

Ken Fowler

As someone whose much-loved dad suffered a similarly awful illness and death, I found your story of the day-to-day challenges, the frustrations of the sometimes indifferent, thoughtless, unhelpful, baffling, medical professionals, prescriptions, systems and your need to keep battling on simply remarkable. Your heart shows on every page. This book should be required reading for health care professionals and caregivers of all kinds.

Margaret B. Hoffmann

Many wives love their husbands, but you truly went the extra mile. Thank you for allowing me to glimpse at your soul.

Eiran Gazit

For me the book is an incredible love story. But, the book is also a must read for anyone experiencing family or friends with dementia. The reader will learn about love, compassion, commitment, and also about the practical things that one needs to know and consider about care, resources, the healthcare system and human dynamics. All doctors should read this book, along with leaders and caretakers in healthcare organizations and institutions. Elizabeth Tierney dignifies dementia and can help others do the same for those they love and care about.

Michael Wheeler

The only kind of dignity which is genuine is that which is not diminished by the indifference of others.

Dag Hammarskjöld

Diagnosed with dementia in 1997, my husband, Jim, lived at home during his illness and died there in January 2006.

I wish this story were fiction, but it is not. Jim might have considered my writing about him a betrayal, and ‘betrayal' is the word he would have used.

Far from a betrayal, this is both a love story and an attempt to reach out to others who are living through or who will live through a similar tragedy. It is written in the hope that others might benefit from what I learned as the caregiver of a dementia victim. Only then will Jim's cruel affliction serve some purpose, because it might help others feel less lonely, bewildered, angry or frustrated than I did, shorten the dreadful learning curve, or encourage others to ask more questions and make fewer assumptions. And because it might remind members of the health care industry – from physicians to orderlies, from agency administrators to certified nursing assistants – that dementia victims and their loved ones are human beings who deserve respect, kindness, empathy and patience, so often lost in our fast-paced society. The diagnostic process I describe was painful and disappointing; perhaps someone else's experience might be easier. Caring for Jim was exhausting; perhaps someone else's caregiving might be less draining. Losing Jim this way – incomprehensible. I offer no advice about repairing a broken heart. I can do nothing for mine.

During the years of Jim's illness, when I overheard people arguing over what to buy or where to eat or what store to go to, I wanted to walk over to them and say, “You are wasting precious time. You never know what might happen, what may be taken away.” In fact, someone once said to me, “You must have just realized what you lost.” No, happily and sadly, I knew.

Jim probably suffered from Lewy Body Dementia (LBD). Why ‘probably'? Only an autopsy would have been definitive, but on the day he died, too stunned, I forgot to remind the funeral home to send his remains to the Alzheimer's Disease Research Center at Duke University.

Most people are probably more familiar with Alzheimer's Disease (AD) – as one aide called it, ‘Old Timer's Disease' – and use that name for all dementias. Sadly, there are others. According to the Alzheimer's Association, 50% to 70% of dementias are Alzheimer's but there's also Parkinson's Disease with Dementia (PDD), Creutzfeldt-Jacob Dementia (CJD), Normal Pressure Hydrocephalus (NPH) and Pick's Disease (PiD), to name a few.

They remind me of the initials of the Roosevelt years: SEC, TVA, FDIC – initials designed to make a country well, unlike these, which are destructive, heartrending initials for illnesses that steal the victims from the people who love them and from themselves. These illnesses are not ‘long goodbyes'. That phrase is too genteel. Watching someone lose his or her mind and body is not polite. It is rude and mean-spirited. True, it can be ‘long'; for us, it was almost a decade.

Tragically, these neurodegenerative illnesses affect many lives, and the number of dementia sufferers is expected to rise significantly over the coming decades – with no cure to date. In December 2005,
The Lancet
reported the findings of a major study indicating that, by 2040, the number of victims will be a staggering 81.1 million people, with a diagnosis every seven seconds. According to the 2010
Alzheimer's Facts and Figures
, 5.3 million people in the United States have Alzheimer's. I remember a physician's saying, “People in nursing homes either have dementia or are about to get it.” While these diseases are spoken about in terms of millions, they are about individuals, the victims themselves and the people who love them – the caregivers.

These diseases are heartless to victim and caregiver alike. I still see the terror in Jim's eyes when he didn't recognize me or his own surroundings, and I still feel the heartache when I could do nothing to help him. Dementia brutalized him and stole the love of my life from me. It altered him, us and me.

Jim was neither wealthy nor powerful; he was not an Alzheimer's sufferer like Ronald Reagan, Iris Murdoch, Charles Bronson, Sargent Shriver, Perry Como or Charlton Heston, nor a Parkinson's victim of the stature of Janet Reno, Michael J. Fox or John Lindsay. Jim's picture did not appear on the front page of
The
Independent
,
The
Times
or
The New York Times
when he died. He was simply a gentle soul and a good man.

This book is divided into four sections.
Part One
describes our life together before Jim's illness and the first signs that all was not well.
Part Two
tells of our desperate search for a diagnosis and the beginning of his decline.
Part Three
speaks of his continuing deterioration and my acceptance that I needed help caring for him and the implications of that realization.
Part Four
is about the emotional and economic costs associated with his illness.

This is not a medical text; it is the story of our experience with dementia and the lessons I learned as I tried to be his voice, to maintain his dignity and to care for him and for me.

A short winter this one,
When all the joys of spring
Conspire to lie about the season.

Nothing here is real,
Not snow, not cold,
Not raw damp chill upon the heart;
But the soft whisper
And the private look,
And the sweet touch of a gentle hand.

A short winter, this one,
To learn a rule of life:
One must be content
To be happy in small ways.

Jim Tierney

It is voiceless now and sad beyond commentary.

Pat Conroy

I lay in bed listening for the sound of Jim's breathing. Under the blanket his body was still. In the darkness, I couldn't see his chest moving, and in the silence I couldn't hear a sound.
Is he alive? Please, Love, please be alive. Oh, God, is he dead? Please, be gone. Then it'll be over. No! No, Cookie, please don't be dead, please.