Mom's Ok, She Just Forgets: The Alzheimer's Journey from Denial to Acceptance
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Mom's Ok, She Just Forgets: The Alzheimer's Journey from Denial to Acceptance
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Product Details
| ISBN-13: | 9781615922819 |
|---|---|
| Publisher: | Rowman & Littlefield Publishers, Inc. |
| Publication date: | 03/05/2010 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 181 |
| File size: | 262 KB |
About the Author
Evelyn McLay (Baltimore, MD), a teacher in Baltimore County elementary schools, cared for her husband and sister-in-law, both of whom died from Alzheimer’s. She also works as a volunteer for the helpline of the Greater Maryland Chapter of the Alzheimer’s Association and the Keswick Multi-Care Center.
Ellen P. Young (Baltimore, MD) is the author of Between Two Worlds: Special Moments of Alzheimer’s and Dementia, based on her experience of caring for both her mother and her aunt. She is a retired medical social worker.
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Mom's OK, She Just Forgets
The Alzheimer's Journey from Denial to AcceptanceBy Evelyn McLay Ellen P. Young
Prometheus Books
Copyright © 2006 Evelyn McLay and Ellen P. YoungAll right reserved.
ISBN: 978-1-59102-469-9
Chapter One
"We Peel the Onion" Layers of DenialLife is like an onion; you peel off one layer at a time, and sometimes you weep. -Carl Sandburg
WHAT IS DENIAL?
Denial is the most important defense mechanism the body employs to shield itself from innumerable situations, from the inconsequential to those that are absolutely life shattering. When faced with the death of a child, the loss of a job, the breakup of a marriage, or Alzheimer's disease, denial becomes an appropriate segment of the grief process. Healthy denial protects the body from initial shock. It acts as insulation until the mind is able to gradually assimilate the catastrophic event. Our natural instincts are at work. We can survive.
Webster defines denial as the act of saying no, a refusal to believe or to accept. This definition neatly parallels the response to unwelcome, unwanted, devastating events: "Oh, no, this can't be happening!" "Tell me it is not true!" "I don't want to believe it!" "I cannot believe it!"
This is not an unreasonable response to thesuspicion of, or the diagnosis of, Alzheimer's disease. We are reluctant to face the disease that will rob our loved one of his or her cognitive skills. This is a disease that will change our lives in ways we are afraid to contemplate. We think, "Maybe it isn't Alzheimer's disease." Denial becomes our comforter.
We fear the unknown, the black uncertainty of the disease that attacks the brain, the center of what we do and who we are. We, of course, are afraid of ourselves-another unknown. How will we face the challenges of the disease? Will we have the courage, the strength, and the patience to deal with the continuing and changing problems the disease brings to a family? With this disease come changes we have not chosen and do not want.
Denial becomes the comfortable covering that shields our conscious mind from the undesirable, the unacceptable. It soon becomes the effective barrier between us and this unwelcome illness, this unbidden sorrow.
We may think, "We are not in denial. We know Dad has dementia. But it's not that bad. We don't have to do anything now. Maybe later, but not now!"
This is classic avoidance, denial's twin, fed by fear.
Unless we can work our way through denial, it becomes our enemy.
Denial entraps us. It keeps us from seeking information about the disease, keeps us from seeking a professional diagnosis and evaluation. Denial keeps us from obtaining much-needed legal and financial advice. It also prevents us from objectively assessing the cognitive decline in our loved one. Is Mother still able to live alone, or are we placing her in a high-risk situation? Would Dad benefit from the social interaction he would experience in daycare? Is Dad a safe driver? (All these things are discussed in later chapters.)
Denial, in some form, is a problem for every member of an Alzheimer's family. We are not alone.
In this book we hope to provide you, the reader, and your family, the towrope of action and the proper attitude to pull you out of denial. We cannot change the diagnosis, but we can suggest healthy, coping mechanisms and positive attitudes that will banish some of your fears as you "stare the monster down." (In her book Between Two Worlds, Ellen gives good examples of people who have been able to do just that.)
DENIAL AS A RESPONSE TO AD
It is important that we tell you up front that denial associated with AD is similar to the many-layered onion. We peel one layer off only to be faced with still another. We face the diagnosis and accomplish all the necessary actions, only to find ourselves in continuing layers of denial:
"Mom's not ready for daycare."
"Dad can still drive, can't he?"
"A support group? Not me!"
"Nursing home placement? Never!"
Every time there are significant changes in our loved one's behavior, every time these changes impact the comfort, security, and well-being we try so hard to create in the midst of this terrible disease, we become unsettled and disturbed. We have to do it again.
What is it?
Change, adapt, accept. We have to change our expectations. We have to change our patterns of behavior to adapt to each new stage of the disease:
"It is time for daycare."
"Dad cannot drive anymore."
"We need a support group."
"Yes, a healthcare center is the best choice for our loved one."
DENIAL ENTRAPS US
Denial can get as strong a hold on us during the course of the disease as it did in the beginning stages of diagnosis. Denial, the beguiling but harmful comforter, can overtake even the most resolute caregiver.
We are so adept at using denial in our everyday lives that we don't recognize it. Do we see ourselves differently in the mirror than we do in reality? Do we harbor exaggerated notions of our child's academic abilities, our skill on the golf course, or our prowess in accomplishing great trade-in deals at the auto dealership? We may defend these actions as simply slight exaggerations, but aren't they really ways in which we have tried to put a positive spin on life, smoothing the rough edges to bring us a little comfort?
Readers can add their own examples of what might be called "spinning the truth." It may seem harmless in small doses because it protects us from harsh realities: we are getting older and "wider." Our skills aren't what they used to be. Our children may not go to prestigious universities. We aren't as clever with money as we wish.
Oh, yes, we have become so adept at using denial in our everyday lives, we don't think of it as denial. However, it can have a harmful effect even in areas that seem inconsequential. It may keep us from adopting healthy eating habits or maintaining a regular exercise program when we choose not to look closely at our expanding waistlines.
Instead of exaggerating our skills on the golf course or at the auto dealership, it may be time to take a few lessons or ask for advice. And perhaps our child needs extra help in school or even a curriculum adjustment.
Denial and avoidance can protect us when we don't want to face an unpleasant situation, when our busy lives leave no room for additional time, energy, or emotional expenditures. Denial shields us from the fear of Alzheimer's disease.
We are afraid of its uncertain progression. We are afraid of the disruption it will create in our ordered lives. We are afraid we may not be up to the task. We are afraid of losing our loved one. We are afraid it may attack other members of our family, even ourselves. We are also afraid of the stigma still lingering in our society-that there is, somehow, something shameful about a disease that attacks the brain.
ALZHEIMER'S: "THE HIDDEN DISEASE"
Alzheimer's disease is often called "the hidden disease." Individuals with the disease may exhibit no discernible symptoms to the casual observer. They have learned to compensate for their memory loss. Our loved ones are adept at covering up their inability to retrieve the correct words. They laugh when they lose their train of thought. Don't we all have "senior moments"? Their social graces linger even far into the disease, and for many, to the very end. When conversation becomes difficult, they simply listen more and talk less. No wonder it is easy to keep our denial as a comforting barrier from the reality that scares us.
We now share with you some common denial statements and stories. These are true, as are all of the stories in this book. We have heard them over and over while counseling caregivers and their families. The names are changed, the details blended. We betray no one's confidentiality. If you see yourself in one of these stories, you know you are not alone.
THE REFRAIN OF DENIAL RINGS AS A LOUD LAMENT
"Mother is just getting older; there is really nothing wrong with her."
(The deep-down fear) "I can't bear the thought of losing my mother."
"Dad has such a brilliant mind. Everyone has always been in awe of his intelligence."
(Unspoken fear) "I don't want anyone to know his mind is failing. It will make him seem less important. I couldn't bear that."
"My wife looks well and is as beautiful as the day I married her. She's quieter now and clings to me a little more than she used to. I like that."
(A gnawing fear) "If friends know there is something wrong with her mind, will we still be included in the social scene? Does anyone have to know right now? Maybe later, but not now."
Kevin is one of the baby boomers and qualifies as a member of the sandwich generation. He explains his situation: "I have two kids in the turbulent teen years, worries about a promotion, college costs looming. My wife works full-time and heaven knows we need her income. How could we assume the care of her parents? We've got just about all the stress we can handle right now. Is there really anything wrong with my wife's dad? My mother-in-law seems to be taking care of all their needs. We don't want to get involved at this point. Maybe later, but not now."
Debbie is trying to keep an eye on her father. It is not easy. There is a certain sadness in her voice as she relates her concerns: "Dad is getting careless. He's forgetting to throw out food. I'm always cleaning out the fridge. There should be more clothes in the laundry hamper. I don't think he changes clothes every day. I'm afraid he doesn't get enough exercise, and he watches too much TV. When I suggest that he should go to the senior center, he gets upset. My uncle (his brother) thinks he's getting dementia. He claims my dad is always repeating himself and doesn't remember things. I told him Dad is OK; he just misses Mom. She's not there to keep him on the right track. Guess I'll have to watch Dad more closely. I'm sure nothing is really wrong."
When many miles separate the family, distance feeds the denial: "Mom and Dad live at the opposite end of the country from my wife and me. My sister lives near them and she seems to be handling their affairs successfully. Lately she tells me she thinks there is something wrong with Mom. She wants me to come and see for myself. She claims Mom has become argumentative and is sometimes aggressive with Dad. Mom denies that anything is wrong and blames Dad for everything. Dad says she forgets things and Mom says it is Dad who forgets. I talk with Mom every week and she sounds great to me. She tells me everything that is happening. Dad sometimes tells me she mixes things up, but don't we all?! And after all, they are getting older. We can't expect them to act like they did twenty years ago. I have too much going on in my own life to borrow trouble."
The rigid control of the successful businessman or -woman used to getting his or her own way can put a detour on the road to a diagnosis: "Let's wait until something significant develops-no use looking for trouble. Mom looks fine; she's just becoming forgetful, not unusual for a woman of seventy-five. When the time comes, I'll take care of everything. If necessary, Mom can move in with us. My lawyer can handle her affairs. In the meantime we'll keep a good eye on Mom. She'll be OK."
"Our family is scattered all over the country. We all work and have children. No one has enough vacation time or money to deal with Mom's and Dad's daily lives. They say they are doing fine. We want to believe them. We have to believe them!"
"What will I do if my husband can't drive? I haven't been behind the wheel in years. I have forgotten how to drive. We only go to church and the grocery store. Nothing can happen on back roads. We can't lose our independence!"
Some of these family members heeded the advice and council given to them and went on to get a diagnosis. Some family members faced difficulty gaining a family consensus. When a strong family leader remains in denial, it is more difficult for the other members to get professional help for their loved one. If the family can act as a team, it is much easier to deal with troublesome times.
For example, in chapter 2 we tell you what happened when Debbie finally took her dad for an evaluation.
We hear the denial expressed so often at the beginning of the Alzheimer's journey. We remind ourselves that it dogs our footsteps all along the way. We authors have been on this journey. We know it well.
We continue to address each layer of the denial onion and honestly admit there are no absolutes, no perfect solutions to the problems that face us. There are, however, workable choices, positive behaviors, and beneficial attitudes that can create a climate in which living with the disease is made so much easier for both the family and the loved one with AD.
OUT OF DENIAL AND INTO ANGER
On our Alzheimer's journey, it is not uncommon to find ourselves out of denial and into anger. Just as our denial was fed by fear, so is our anger. The fear of the monumental responsibilities that face us may be expressed as anger.
Our anger can develop when we don't get the family support we need. It can simmer when we feel unappreciated. When our favorite recreational activities are curtailed because of caregiving duties, we are upset.
When we don't understand the disease, we expect behaviors that our loved one is now no longer able to give us. We overestimate his abilities and underestimate his cognitive losses. When he fails to understand a simple request, or when he is unable to perform a task today that he could do yesterday, it may provoke our anger. Our loved one's repetitive behavior, his following our every footstep, or "shadowing," may cause frustration that turns to anger when we are suffering from fatigue.
Our own attitude can foster angry feelings within us. We are angry because there is no cure for AD. We feel inadequate for the task of caregiving. "Why me?!" we ask ourselves. And now our anger mingles with guilt.
We feel guilty because we have harbored resentment and anger against our loved one. We feel guilty when we question the quality of care we have given our family member. Is there something we should have done, or could have done better or differently? We probably take ourselves on the biggest guilt trip when we face the prospect of nursing facility placement.
Intellectually we know that guilt is a harmful and destructive emotion. It causes us to dwell in a past we cannot change and even to anticipate a future that may never happen. We need to forgive ourselves for any past mistakes, real or imagined. We did the best we could do at the time.
Just as it is important to recognize our denial all through the Alzheimer's journey, so, too, we must acknowledge our anger and guilt. One of the best places to share our feelings is in a support group. Here we meet companions who are on the same journey. They are not only nonjudgmental, but also they understand, for they share our emotional experiences (see chapter 4).
Caring for someone with Alzheimer's disease can cause us to experience inconvenience, stress, annoyance, frustration, and full-blown anger. It is all right to be angry. This is normal and natural. What must concern us is how we express this anger.
Some of us may suppress the anger, another act of denial. We may think we have no anger or that anger is an inappropriate emotion in light of our loved one's disease. So we deny the feelings.
What is anger? Webster defines it as a feeling of extreme displeasure toward someone or something. Don't we feel extreme displeasure toward the disease of Alzheimer's? Of course we do, and it is all right to do so. What is not acceptable is anger directed toward our loved one with AD. For this reason it is our responsibility to learn as much as we can about the disease. We need to understand why our loved one behaves the way he does. We need to learn techniques that will help us deal positively with the challenging behaviors and that will also prevent angry behaviors from our loved one.
When our anger is directed toward family members who seem not to appreciate our caregiving or are reluctant to offer their help, it is time for a reminder: we can only control ourselves.
Exercise is a great stress reliever. When Evelyn experienced extreme frustration, she tried to work it off by completing chores inside and outside of the house. It was not unusual to see Evelyn raking leaves at 9 PM or shoveling sidewalks after dark. Keeping a journal is another way to express anger without hurting anyone. We can find words for our anger, unload our deepest fears, and admit our mistakes.
We need to accept our feelings of anger and guilt as natural. Instead of denying them, we need to understand them. We are angry; we are losing our loved one. We are losing the safe haven of "the usual." The future is uncertain. Can we trust our ability to cope with the difficulties ahead? At times, it is natural to become overwhelmed by a desire to escape our responsibilities. We are not alone! Others have felt this way, too. We need not feel guilty.
As important as it is to take good care of our loved one, it is equally important to take good care of ourselves. As caregivers, we are not being selfish when we put a high priority on our rest, recreation, and laughter. In doing this, we become better at coping successfully with our feelings of anger and guilt. We are more able to develop a positive attitude when dealing with life's vicissitudes. It takes a strong desire and lots of practice to remain in a positive mode while seeking solutions to life's problems. An old New England saying gives us some wise advice: "You cannot control the wind, but you can adjust your sails."
Let us start that adjustment by moving from denial to action. We often remain in denial because we don't know what to do, or we convince ourselves there is nothing we can do. We authors would like to dispel that notion as we outline positive actions that will help us get out of the shadow of denial. We must stop holding on to the life that was in order to deal with the life that is. We must plan for the future.
Positive action, positive attitude-these we owe to the one we love, and to ourselves. In subsequent chapters we will help you, the reader, move from denial to action, which we hope will lead you to acceptance.
(Continues...)
Excerpted from Mom's OK, She Just Forgets by Evelyn McLay Ellen P. Young Copyright © 2006 by Evelyn McLay and Ellen P. Young. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Acknowledgments................................................................................................13Forewords......................................................................................................15
Introduction...................................................................................................19
Chapter One "We Peel the Onion" Layers of Denial...............................................................25
What Is Denial?................................................................................................25
Denial as a Response to AD.....................................................................................26
Denial Entraps Us..............................................................................................27
Alzheimer's: "The Hidden Disease"..............................................................................28
The Refrain of Denial Rings as a Loud Lament...................................................................29
Out of Denial and into Anger...................................................................................31
Chapter Two "We Define the Monster" Alzheimer's Disease........................................................35
Defining Dementia; Defining Alzheimer's........................................................................37
Reversible Causes of Dementia..................................................................................37
Irreversible Causes of Dementia................................................................................38
The FourAs....................................................................................................39
The Warning Signs of Alzheimer's Disease.......................................................................40
Examples of Dementia Symptoms Caused by Reversible Conditions..................................................42
Getting a Diagnosis............................................................................................45
Denial Steps into the Picture..................................................................................46
Answering the Denial Arguments.................................................................................47
To Tell or Not to Tell?........................................................................................51
Chapter Three "Mom's OK, She Just Forgets" Denial and the Family Unit..........................................53
The "Family" and Dementia......................................................................................53
Scenario One: A Success Story..................................................................................55
Scenario Two: A Universal Story................................................................................56
Scenario Three: Early-onset AD.................................................................................58
Scenario Four: Mom and Dad in Denial...........................................................................59
The Importance of Planning.....................................................................................64
Chapter Four "I Can't Take Care of You unless I Take Care of Myself" Caring for the Caregiver-Part I................................................................................67
Getting Professional Help......................................................................................67
The Family Network: Positive Support (or the Lack Thereof).....................................................68
Friends and Neighbors..........................................................................................74
Tips for Fostering Good Relations with Your Friends............................................................75
Gain Knowledge to Understand the Disease.......................................................................75
Amnesia........................................................................................................76
Aphasia........................................................................................................76
Agnosia........................................................................................................76
Apraxia........................................................................................................77
Support Groups.................................................................................................77
The Support Group and Role Reversal............................................................................78
The Support Group and Role Addition............................................................................79
Respite Opportunities..........................................................................................79
Chapter Five "Honey, Please Hand Me the Broom" Developing Communication Skills.................................85
Realization of Language Loss Can Be Shocking...................................................................85
A Coin with Two Sides..........................................................................................87
Passive Participation..........................................................................................88
Responding to the Non Sequitur.................................................................................89
The Other Side of the Coin.....................................................................................90
Tips for Improving Communications..............................................................................91
Understanding Anger............................................................................................92
Another Cause of Angry Behavior................................................................................93
Unresolved Anger...............................................................................................94
Chapter Six "She's Just Pushing My Buttons" Challenging Behaviors..............................................97
Inconsistent Behaviors.........................................................................................97
The Need for One-step Directions...............................................................................98
Processing Auditory Stimuli....................................................................................99
Denial Prevents Understanding..................................................................................100
A Powerful Prescription for Sane Caregiving: Patience, Perspective, Humor......................................101
Does It Really Matter?.........................................................................................102
Never Argue....................................................................................................104
Rearranging Reality............................................................................................106
Never Say No...................................................................................................108
Introduce Humor................................................................................................110
Chapter Seven "Dad's a Danger to Himself and Others" The Driving Dilemma.......................................111
The Love Affair with Our Car...................................................................................111
The Familiar Voice of Denial...................................................................................112
A Careful Look at Reality......................................................................................113
Unsafe Behaviors Consistent with Dementia......................................................................114
Possible Consequences of Unsafe Driving........................................................................114
A Family Gathering to Agree on Specific Actions................................................................115
How to Implement the Action Plan...............................................................................116
Gradual Weaning-Plant the Idea Early...........................................................................116
Assessing Driving Ability......................................................................................117
It Is Time to Stop-What Do We Do Now?..........................................................................118
Remove the Car and License.....................................................................................119
Disable the Car................................................................................................119
Ask the Doctor for Help........................................................................................120
The State Motor Vehicle Administration.........................................................................120
About Those Car Keys!..........................................................................................120
A Brief Review.................................................................................................121
Chapter Eight "The Lifesaver for Both Caregiver and Loved One" The Daycare Decision............................123
The Positive Value of Daycare..................................................................................123
Answering the Denial Excuses...................................................................................124
How to Move Out of Denial and into Action......................................................................126
What to Look for in an Adult Daycare Facility..................................................................130
Physical Appearance............................................................................................130
Staff..........................................................................................................130
Activity Program...............................................................................................131
Nutrition......................................................................................................131
Transportation.................................................................................................131
Cost...........................................................................................................131
Hours..........................................................................................................131
Clientele......................................................................................................132
Additional Services............................................................................................132
Daycare Keeps Nancy at Home....................................................................................133
Chapter Nine "We Examine Our Attitude toward Alzheimer's" Caring for the Caregiver-Part II.....................135
Ways to Deal with the Changes Alzheimer's Brings...............................................................135
The Three Do's.................................................................................................136
Alleviating the Holiday Blues..................................................................................137
Commercials Depicting the Ideal................................................................................137
Additional Tasks...............................................................................................138
Memories of Holidays Past......................................................................................138
Changes in Routines............................................................................................138
Visitors.......................................................................................................138
Gifts..........................................................................................................139
Christmas Cooking..............................................................................................139
Decorations....................................................................................................139
Cards..........................................................................................................139
Visits.........................................................................................................139
Holiday Dinner.................................................................................................140
Changing the Fourth of July Celebration........................................................................141
Attitude Adjustment............................................................................................142
Taking Care of the Caregiver...................................................................................144
Chapter Ten "I Only Promised because She Made Me" The Long-term Care Decision..................................147
Is It Time?....................................................................................................149
Multiple and Diverse Residential Healthcare Settings...........................................................154
Board and Care/Adult Boarding Homes/Adult Foster Homes or Group Homes..........................................154
Assisted Living Facilities.....................................................................................154
Continuing Care Communities/Retirement Communities/Life Care Facilities........................................156
Long-term Care Facilities/ Nursing Homes/Skilled Nursing Facilities/Healthcare Centers.........................158
Questions to Ask When Visiting a Nursing Facility..............................................................160
Importance of Advance Planning.................................................................................163
Twenty-four-hour Professional Care at Home.....................................................................164
Hospital Care..................................................................................................165
Positive Aspects of Assisted Living or Nursing Center Placement................................................167
Chapter Eleven "We Reach Acceptance" With Love, Tears, and Humor...............................................169
Two Different Kinds of Acceptance..............................................................................170
Ingredients of Healthy Acceptance..............................................................................170
Our Loved Ones Work through Their Acceptance...................................................................172
Accessing Mirth................................................................................................173
Gradual Development of Healthy Acceptance......................................................................174
Appendix.......................................................................................................175
Suggested Reading..............................................................................................181
What People are Saying About This
"This book is a beautifully and sensitively written guide to caregivers who are coping with the painful journey of a loved one's dementia. Ms. McLay and Ms. Young document the emotional twists and turns of a difficult job, and take the reader by the hand at every turn. The authors touch upon the many scenarios that families experience, from total denial to total acceptance and teamwork. Every family will find its own unique experience in this book along with tips for coping. The reader is not alone -- this book is the next best thing to a caregiver support group. These ladies have walked the walk with their respective loved ones, and can talk the talk. They have experienced the trials and learned how to survive with excellent coping skills and a sense of humor.
"I highly recommend this book to anyone facing the challenges of a loved one's dementia!"
—LCSW-C, C-ASWCM
Geriatric Care Manager and Director, Keswick At Home, geriatric care management program.