The TLC Story - Moderate Dementia

By Thomas Connolly

The TLC Story - Moderate Dementia

A Guide for Caregivers of Loved Ones in the Moderate Stage of Alzheimer's and Related Dementia Diseases

"TLC" is a common language abbreviation for Tender Loving Care. It is also the monogram for Tom (the caregiver) and Laura (the loved one living with dementia) Connolly. Giving TLC is th

• Language: English
• Publisher: DEMENTIA CAREGIVING USING TLC
• Release date: May 21, 2021
• ISBN: 9781734406436

Thomas Connolly

Author's Biography: Tom Connolly is a happily retired senior. He had a dual working career as a communication industry manager and an officer in the naval reserve. At Notre Dame, Tom earned a BA and a BS degree in Mechanical Engineering. From Rollins College, he earned a Master's degree in Management. His formal education, corporate training and experience, and military training and experience are extensive. Tom provided tender loving care to Laura, his wife of 51 years, for the decades she lived with dementia diseases. During that period, Tom performed extensive research into how to provide Tender Loving Care to Laura and how both could live life to its fullest. He was successful and shares his knowledge with previous, current, and future caregivers in his series of books with the title "The TLC Story" in the three different phases of dementia: mild, moderate, and severe.

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Copyright © 2021 Thomas J. Connolly

Title: The TLC Story – Moderate Dementia

Subtitle: A Guide for Caregivers of Loved Ones in the Moderate Stage of Alzheimer’s and Related Dementia Diseases

Author: Connolly, Tom

Author website: www.tlc4dementia.com

Published in 2021 by: Dementia Caregiving Using TLC.

First edition dated 2021. Printed on Demand and bound in the United States.

Library of Congress Control Number: 2021906446

International Standard Book Numbers:

Paperback book: ISBN: 978-1-7344064-2-9

Digital/electronic book ISBN: 978-1-7344064-3-6

Author-generated Library of Congress Catalog Information and Numbers:

Senile dementia – Patients – Home care. RC521 .C67 2021

Dewey Decimal Number 616.83 .C67 – dc23 (Dementia – Patients – Care)

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, or by any information storage and retrieval system without the prior written permission of the publisher; except in the case of very brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, contact author website.

Dedication

I dedicate this book to you, the previous, current, or future caregiver. I intend to help you become proficient in providing Tender Loving Care to your loved one living with a neurodegenerative disorder.

Acknowledgments

I have focused this book on the moderate stage of dementia. The text provides specific and helpful information to people caring for a loved one during the moderate stage.

I want to thank our children, family members, Laura’s family, friends, neighbors, social and duplicate bridge players, church members, retired military members, and retired telephone pioneers. They all helped me during my caregiving journey. Various writing group members and author friends provided valuable support. With help from these people, hands-on learning, and many written sources, I eventually became proficient in providing Laura with Tender Loving Care. It is the absolute minimum a loved one living with a neurodegenerative illness deserves.

I have devoted years to research, study, and caregiving. My efforts produced this book which has one purpose: To help you become a proficient caregiver for your loved one.

My brother, Patrick J. Connolly (yes, himself), edited this book. As a retired college professor, he knew how to inspire me to write at a higher proficiency level. His primary developmental direction included an emphasis to explain my message using more stories and fewer lists. He succeeded only in part because I believe listing information simplifies complexity and enhances learning. Pat’s insightful comments helped me produce a better book.

Different internet-based editing programs helped improve my writing. The ones I used included AutoCrit, Grammarly, and ProWritingAid. All three enhanced my writing skills by providing coaching, technical advice, and common-sense recommendations.

The EbookPbook Company completed the book cover design and interior text formatting. The Jason and Vidya team performed superbly and have my highest recommendation.

I wrote the book using the Microsoft Word program. I have made it available to readers by using the print on demand features of the Amazon-Kindle and IngramSpark publishing platforms.

Laura’s dementia was a life-changing event for both of us. Dealing with the challenges of this disease is difficult to imagine. After reading this book, you will gain an intimate knowledge of our experience and the know-how to proceed if thrust into this situation.

Finally, I wish to acknowledge each of the world’s 100+ million dementia caregivers for their efforts. I hope each caregiver can provide Tender Loving Care to their loved one and benefit from reading this book. Thank you for what you do.

Limitation of Liability and Disclaimer of Warranty Information:

This publication’s information and advice is related to improving the home health care of a loved one living with dementia. I do not intend it as medical advice or as a substitute for medical advice or counseling by physicians, experts, or professionals in this area. A caregiver should evaluate this information and consider it a supplement to a physician or another trained health professional’s guidance and care. Experts agree there is no cure for dementia diseases, nor is there a treatment to slow the progression of these eventually fatal diseases. No one has all the answers, especially the author of this work. The advice and recommendations in this work may not be suitable for a specific individual’s situation. I do not intend the information I provide in this publication to substitute for expert medical advice and treatment. I am offering it to help caregivers make informed choices because each individual’s care needs are unique. The author encourages caregivers to seek medical expertise from physicians and other qualified health care practitioners in all matters requiring medical attention. The physician or medical practitioner may then develop an optimum individual treatment plan.

While the author has used his best efforts in preparing this work, the author makes no representations or warranties concerning the accuracy or completeness of the information presented. The author encourages all readers to consult with medical professionals.

The reader may find that some content in this work is contrary to information, advice, or guidance provided by a physician or other qualified health care practitioner. In that case, the caregiver should follow the medical professional’s advice and guidance.

TABLE OF CONTENTS

Dedication

Acknowledgments

Prologue

Chapter 1 Introduction

Chapter 2 Speaking Without Being Understood

Chapter 3 Conversing Without Communicating

Chapter 4 Recent and Short-Term Memory Vanishes

Chapter 5 Lifelong Basic Memory Slowly Deteriorates

Chapter 6 Complex Memory Loss

Chapter 7 Personal Care Skills Diminish

Chapter 8 Driving with Dementia

Chapter 9 Falling with Dementia

Chapter 10 Repeated Activities

Chapter 11 Personality Changes

Chapter 12 Social Isolation

Chapter 13 Sleep Disturbances

Chapter 14 The Mirror Sign

Chapter 15 Misidentifications

Chapter 16 Entering Laura’s World

Chapter 17 Quality of Life

Epilogue

Prologue

It is not how much you do, but how much love you put in the doing.

– Mother Teresa

The Long Goodbye

Relationship transitions challenge a married couple during neurodegenerative disease.

What Happened to Laura

We repeated our marriage vows three times. The first time occurred in our twenties on a gorgeous June morning in North Florida. We became husband and wife in the Mayport Naval Base Chapel near the destroyer berths, where I served on active duty.

In our forties, we splurged on a cruise to explore the southern Caribbean. We delightfully accepted the Ship Chaplain’s offer to take part in a meaningful marriage vow renewal ceremony.

Fast forward to our sixties as we again renewed our marriage vows on the fantail deck of the USS North Carolina Memorial battleship. The ceremony honored couples who tied the knot while in military service. Following a photo opportunity, the battleship captain shared some pertinent remarks to the group. Although the day was overcast and rainy, our spirits remained sunny.

Our bond strengthened during the decades as we faced life’s adversities together and overcame them. As a well-matched team, we enjoyed a passion for each other. During a long, fun, and satisfying marriage, Laura sustained our family and social network, while my strength focused on providing for the family.

The moderate stage Long Goodbye lasted for about a decade. Our marital relationship changed as Laura progressed through dementia. The constant has been our companionship, and for that, I am grateful.

Some Background Information

The love between two married people is constantly in flux. It changes from marital romantic attachment to the love and powerful bond two committed people have for each other. It changes again because of dementia. When a loved one lives with neurodegenerative disease, the devoted caregiver’s love strengthens to a more extraordinary love. This final emotional intensity can be the strongest, as there is no greater love than the love a person feels for a helpless mate, parent, or child.

Tender Loving Care Worked for Us and May Work for You

I understood the moderate stage transitions and accepted each as they happened.

Throughout the long goodbye, pieces of my heart disappeared. Thoughts of losing Laura were sad. Each piece I lost went to a place in my mind that strengthened my resolve. I gained an increased commitment to defending a helpless loved person from the snares and hazards of the world. My emotions for Laura continued to be strong in my conscious and subconscious mind.

By the late-moderate stage, I accepted Laura’s reality and knew her life was mostly complete. When this realization is accepted, it is difficult to maintain a positive attitude. A caregiver needs to focus his or her mind on constructive thoughts. To help this goal, I include several pertinent quotations at the beginning and end of each chapter. Reviewing encouraging messages and driving discouraging thoughts from the caregiver’s mind is an important priority.

Thinking Positive Thoughts

Caregiving often calls us to lean into love we didn’t know possible. – Tia Walker

Being deeply loved by someone gives you strength while loving someone deeply gives you courage. – Laozi

Positive thinking will let you do everything better than negative thinking will. – Zig Ziglar

Chapter 1

INTRODUCTION

Defending a helpless person from the snares and hazards of the world enhances the gift of life for both.

– Tom Connolly

Moderate dementia is the longest of the three main phases of this neurodegenerative disorder. It comes in like a lamb and leaves like a lion. It never stands still. The mild stage’s pleasant life became challenging during the moderate years, but these years happened too fast. The moderate stage raced by, not in a decade, but as fast as you can blink your eye.

Allow me to introduce some primary areas:

Moderate Dementia Overview

Laura’s Dementia Tactics and Strategy

Challenging Behaviors

Showtimers

Caregivers can use Tender Loving Care strategies to help manage each area and avoid being overwhelmed.

Moderate Dementia Overview

I detest the word dementia!

It is not a disease, but many people believe it is one. Dementia is a general-purpose umbrella word for a set of symptoms caused by brain illnesses. A syndrome is a group or set of symptoms that consistently occur together in different diseases, so dementia is a syndrome. The precise distinctions are hard to comprehend, as are the many methods used to describe the various stages. The mild, moderate, and severe stages overlap and muddle this subject.

Dementia is a persistent disorder of the mental processes. Cerebral sickness causes the disease. Personality changes, memory afflictions, and impaired reasoning result because of the illness. Some undesirable and imprecise synonyms are derangement, madness, lunacy, and insanity. Although these are horrible words, countless others are harsher.

Demented as an adjective describes someone who is suffering from the illness. The word portrays a person being erratic and having anger, anxiety, and distress issues. Some adverse and inaccurate synonyms are mad, insane, out of one’s mind, unbalanced, and disturbed. These synonyms are hideous expressions. Many others are more insulting.

Dementors in the Harry Potter series of novels are the frightful figures shown wearing black, shredded garments. Their ragged costumes trail behind as the nightmare specters zoom through the air in a blur. Dementors are terrifying beings. They fly almost faster than the eye can follow.

The words dementia, demented, and dementor all carry negative connotations. Some clinicians believe the medical establishment should replace the D word with a less offensive but more accurate and precise term. They suggest using Neurodegenerative Disease (ND) or Neurodegenerative Disorder (ND). I hope one of these terms and the abbreviation ND may someday replace the words used today.

Here is a quotation from the National Institutes of Health:

Neurodegenerative diseases occur when nerve cells in the brain or peripheral nervous system lose function over time and ultimately die. Although treatments may help relieve some physical or mental symptoms associated with neurodegenerative diseases, there is currently no way to slow disease progression and no known cures. [1]

What Happened to Laura

This book honors Laura’s memory and helps those who travel this rocky road. Gaining a dramatic improvement in the skills needed to support a person with a brain ailment enhances a caregiver’s life. The wisdom I gained during a decade and share in this book is vital for reliable caregiving. You will benefit from my understanding of moderate dementia caregiving.

Some Background Information

Here is a quotation from the Alzheimer’s organization:

"The number of Americans living with Alzheimer’s is growing – and growing fast. More than 5 million Americans of all ages have Alzheimer’s.

"An estimated 5.8 million Americans age 65 and older are living with Alzheimer’s dementia…. Eighty percent are age 75 or older.

"One in 10 people age 65 and older (10%) has Alzheimer’s dementia.

"Almost two-thirds of Americans with Alzheimer’s are women.

"Older African-Americans are about twice as likely to have Alzheimer’s or other dementias as older whites. Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites.

As the number of older Americans grows rapidly, so will the number of new and existing cases of Alzheimer’s. By 2050, the number of people age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow, or cure Alzheimer’s disease. [2]

Here is a quotation from a study conducted by the National Alliance of Caregiving and AARP:

"The report highlights the 48 million caregivers caring for someone over the age of 18. Key findings include:

"Nearly one in five (19%) are providing unpaid care to an adult with health or functional needs….

"More Americans (24%) are caring for more than one person….

"More family caregivers (26%) have difficulty coordinating care….

"More Americans (26%) are caring for someone with Alzheimer’s disease or dementia….

"More Americans (23%) say caregiving has made their health worse….

"Family caregiving spans all generations….

61% of family caregivers are also working. [3]

Exact numbers are not available, but more than 10 million unpaid caregivers in our country provide some care to the more than six million seniors with dementia. Yes, it takes more than one unpaid person to care for an aged person with dementia living in a residential situation. The six-million-person pipeline of diagnosed individuals stays relatively constant. About one-half of a million people with a new diagnosis enter this pipeline annually, while another one-half of a million people with a previous diagnosis depart the pipeline because of their deaths.

Here is another quotation. It is from the National Institutes of Health:

The risk of being affected by a neurodegenerative disease increases dramatically with age. More Americans living longer means neurodegenerative diseases may impact more people in coming decades. This situation creates a critical need to improve our understanding of what causes neurodegenerative diseases and develop new approaches for treatment and prevention. [4]

There is a high correlation between advanced age and dementia. We all want to enjoy life in the golden years. Let’s say the oldest-old are people age 85 and older. Imagine being on a stage in the center of the football field of a Super Bowl at halftime to speak about dementia. Yes, you are the principal half-time entertainment. Also, imagine this massive crowd has only 85-year-old men and women in attendance. During your presentation, you ask everyone to make a fist and give the person to your right a fist bump. Then, you ask everyone to give the person on your left a fist bump. When the commotion reduces, and the crowd settles down, you regain everyone’s attention and announce, Before you three start celebrating for being so healthy, please understand that one of you three probably has dementia and that one of the other two is probably the caregiver.

Tender Loving Care Worked for Us and May Work for You

I never talked down to Laura, treated her as a small child, or viewed her as handicapped in any manner.

I never used words, gestures, or facial expressions condescendingly. When Laura perceived herself as being disrespected, her illness generated agitation, anger, and aggression.

Consider a woman with brain illness as the Crown Princess of the realm. She may be the Queen someday, and it is essential to treat her accordingly.

We must treat a man with a neurodegenerative disease as the Crown Prince of the kingdom. His destiny is to sit on the throne and be the King.

Treat royalty with respect. Monarchs are unique and worthwhile. Accept the royal person as they are and do not change them. If they insist on being spoiled, spoil them! Never lie to royalty. Treat people with brain disease as honored royalty.

Patience, understanding, kindness, and gratitude motivate pleasant thoughts. It is best to expect, avoid, and minimize complications. Naturally, I minimized Laura’s deficiencies and focused my efforts on giving her help. Reassurance and comfort, both in words and in touch, were necessary. Since Laura’s attention span was short, I gave her extra time to respond to a comment or perform a task. I kept visual stimulations and background noise to a minimum because she had difficulty handling distractions.

Researching books, magazine articles, and the internet provided me with a wealth of general information about dementia. Yes, it is essential to understand that old age is not for sissies. Reaching the golden years means a person has taken care of their health during their long life.

Laura’s Dementia Tactics and Strategy

Everyone handles dementia differently. There is a tremendous variance in how the person with the disease uses their remaining cognitive skills to deal with this syndrome.

What Happened to Laura

Laura was fully aware of the realities of neurodegenerative disorders. She knew there is no approved treatment for the underlying disease. Laura believed nothing would change her brain disease progression, not only in her case but also for the millions of people facing the illness today. She knew that the approved medications might reduce some symptoms but have a danger of undesired, unintended, and adverse side effects. Consequently, Laura decided to avoid taking approved medications.

In my previous book covering mild cognitive impairment and mild dementia, I devoted three chapters to explaining several vital subjects:

The Right to Personal Privacy

The Right to Exercise Denial

The Right to Avoid a Dementia Diagnosis

A summary of each is in this segment.

The Right to Personal Privacy

This moderate dementia book is about our dirty laundry, as Laura often declared. Whenever I broached the subject, she established direct eye contact with me, put on her game-face, and proclaimed, Our business is our business! The stigma associated with mental illness includes progressive neurodegenerative brain ailments. Mental health deterioration is stressful to confront, painful to think about, and dreadful to explain to others.

Laura chose privacy and did not disclose her disease to anyone. Personal privacy was her rational choice, and I supported it for many reasons. There is no cure and no effective measures to slow the progression of her brain disease. She believed the best strategy was not to talk or think about the illness.

She desired privacy in matters she believed should remain private. Laura felt no value existed by communicating her troubles to others. On what she thought should stay confidential, her emotional need for privacy prevailed. I supported Laura’s choice for many reasons.

Laura did not want anyone to feel sorry for her or ask intrusive questions about her incurable infirmity. She believed broadcasting her issues would be counterproductive. Laura thought exposing her dilemma and discussing her challenges would increase pain, sadness, and heartache in her life.

Her wishes became my commands, so we kept a united front on the privacy decision.

The Right to Exercise Denial

She also chose denial. Confronting the sickness is overwhelming. By denying the syndrome, Laura reduced the impact of the host of negative thoughts that bombarded her. Laura’s decision to disavow her deficits proved logical and beneficial. Why? Having this disorder triggers tremendous fear. Confronting the circumstance is overwhelming. By choosing the denial alternative, Laura eliminated a host of bombarding painful thoughts. Since no cure exists and no effective measures slow its progression, not talking about it minimizes thoughts of future negative consequences.

A collateral advantage of the option to maintain confidentiality included the therapeutic aspect of coupling privacy with denial. Laura gained temporary relief from the immense burden of dementia. She earned some relief from personal stress by using her imagination to generate happy thoughts.

The Right to Avoid a Dementia Diagnosis

Laura also chose not to endure the steps, procedures, and embarrassment involved in obtaining a definitive diagnosis of her neurodegenerative disorder. Laura’s preference to not be told she had an incurable disorder was valid and supported by me. I would make the same decision in the same circumstances.

For some people, a formal diagnosis comes as a relief, as they believe they have learned the cause of their problem. Many others choose to think it is the fate of many people as aging progresses. These people accept dementia as something to live with using the best of their abilities. Laura did not battle the disease, nor did she struggle against it. Laura thought, Why should I bother? She believed a neurodegenerative disease is an incurable event near the end of life.

Tender Loving Care Worked for Us and May Work for You

The three counter-offensives of choosing personal privacy, denial, and avoidance of a diagnosis fit together as a unified psychological defense mechanism. They flatten the emotional impact of a landslide of future doom. A focused awareness of decreased intellectual capacity can generate emotional torture. Reducing mental agony is logical, desirable, and beneficial.

My total support of Laura’s lifestyle choices of privacy, denial,