Mom's Ok, She Just Forgets: The Alzheimer's Journey from Denial to Acceptance »

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 World: 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.

Foreword by Barry Gordon, M.D., Ph.D., Johns Hopkins Medical Institutions

"Mom's OK, she just forgets."

"Dad only drives to the grocery store."

"A support group? I don't need one."

"My husband is not ready for day care."

"Nursing home placement? Never!"

These and similar expressions of denial are often heard in families struggling with the difficult challenges of Alzheimer's or dementia in a loved one. Denial may seem to be an acceptable coping mechanism when faced with a disease that has no cure. But in fact the failure to accept reality can work against the welfare of the person suffering from a disease that causes dementia, making a bad situation worse for the whole family.

In this reassuring and very helpful handbook for families, experienced caregivers Evelyn D. McLay and Ellen P. Young suggest various behaviors, tools, and techniques for moving beyond denial. Real people who have faced the many problems brought about by Alzheimer's speak out, with hope, from these pages. They share their journeys from denial to loving action and an improved attitude that helps them deal with their personal plights.

Separate chapters address the issues of caregiver burnout, developing communication skills, challenging behaviors that "push your buttons," when to remove driving privileges, day care for the elderly, deciding on long-term care, and the need for acceptance.

Without minimizing the daunting challenges of Alzheimer's and dementia, the authors stress the importance of remaining positive and appreciating the moment while acting in the best interests of loved ones.

Contents

Acknowledgments................................................................................................13
Forewords......................................................................................................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