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"The subject of physical and mental deterioration and its consequences on people and their loved ones is one that most of us prefer to avoid, even those of us who provide medical care to the elderly. Yet, this is often part of the human experience. Information written on the subject is usually dry and didactic. Kathy Stewart has granted the reader access to her world, the assisted living community, where extraordinary needs are met by extraordinary people. Through interesting, illustrative, and poignant vignettes, a realistic, often intense and
"The subject of physical and mental deterioration and its consequences on people and their loved ones is one that most of us prefer to avoid, even those of us who provide medical care to the elderly. Yet, this is often part of the human experience. Information written on the subject is usually dry and didactic. Kathy Stewart has granted the reader access to her world, the assisted living community, where extraordinary needs are met by extraordinary people. Through interesting, illustrative, and poignant vignettes, a realistic, often intense and yet hopeful experience is accorded the reader. This book, crafted professionally and compassionately, is a gem that should be read not only by relatives of people suffering progressive memory loss but by all of us, since many of us will eventually be touched by this situation in our lifetimes."
-Mark H. Greenberg, MD, FACR, Rheumatologist, Author of "Doctor, Why Do I Hurt So Much?"
"Few events impact an entire family more than the onset of dementia in a parent, spouse, sibling, or close friend. Drawing upon her own personal and professional experiences, Kathy Stewart has developed a practical guide for caregivers. The book is easy to read, yet it provides a wealth of useful information which is accessible to all. It should provide knowledge and comfort for anyone caring for an individual with dementia."
-George A. Kuchel, M.D., FRCPC, Professor, Citicorp Chair in Geriatrics & Gerontology, Director, UConn Center on Aging, University of Connecticut Health Center
"Kathy Stewart has provided an outstanding, informative, and useful guide. This book is required reading for all adult children and caregivers who seek to provide the best possible care for Mom and Dad. I wish I had this book when my own mother developed stroke-related dementia and needed extensive specialized care."
-Elly Trepman, M.D., Professional Associate, Department of Medical Microbiology, University of Manitoba, www.manuscriptsurgeon.com
Prelude to Dementia
Alice, who is eighty-three years old, sits in an elderly care community with her eyes closed, listening to a voice telling her to open her mouth and take another bite. Alice keeps her mouth closed in protest. She does not want to ingest another bit of food. Alice has lost fifteen pounds during advanced stages of Alzheimer's dementia, a disease she has been battling for eight years. She also has lost her ability to walk independently, and she is weak and unsteady. She is confined to a wheelchair for safety.
The persistent voice of her daughter, Gretchen, once again demands that she should open her mouth and take a bite of dinner. Gretchen, now in her fifties, is searching for distant memories of when she was young and this role was reversed. She tries to remember the tricks her mother used to get her to open her mouth.
Gretchen recalls a time when she herself was ill and very dehydrated. Her mother would hold a spoonful of clear soup and beg Gretchen to open her mouth, promising her a new outfit after she got better. "Mom," Gretchen explains, "if you eat and get stronger, we can go shopping!" Alice's mouth remains closed.
Gretchen is losing patience. "Open your eyes!" she demands. Gretchen looks into her mother's blue eyes, hoping to find a spark of attentiveness. Instead, she gazes into what seem to be the eyes of a distant stranger who has no interest in Gretchen or what she is saying.
Gretchen has had a long day at work and is tired. She wonders what food she has at home to make dinner for herself and her husband, who by now is probably waiting for her at home. She turns to Alice, who is very thin and does not resemble the able-bodied mother who raised her. She wants her mother to eat, regain strength, and return to a time when she could remember Gretchen's identity.
Alzheimer's disease has taken Alice from Gretchen, but Gretchen wants her mom back. Occasionally, Alice may be more bright-eyed and experience moments of clear memory, lucid thoughts, and conversation. However, these times pass, and Alice returns to a state of not knowing her daughter Gretchen at all. Alice then repeatedly asks questions about where her long-deceased parents are located, and she reflects on their recent visit. Gretchen does not know how to handle these statements about parents who died many years ago and thoughts that are not reality.
Gretchen's eyes fill with tears as she struggles with this overwhelming and frustrating responsibility. How does this happen? Why is it happening to Alice? What is the best way to care for her? Who has the answers? Gretchen knows she is not the first person to encounter this situation, but it is the first time for her, and she is lost.
Little guidance is provided for many typical journeys and challenges in life. Surprises are around every corner along life's most important paths. Why are we surprised? Why is there not more guidance before big events in life, such as childbirth? I remember thinking during my first experience giving birth, and all the new experiences that followed, that there is too much unshared information. Much of what happens to us throughout the generations is not discussed.
Despite the difficulties of raising children, many people have the passionate opinion that their experience of raising children was their most significant accomplishment. The small print should read, "With the child-rearing experience, you may encounter sleepless nights, emotional upset, financial stress, and other disturbances." Although literature is available for advice, most sources are inexact and contain theories and opinions that may not apply to the situation. This may cause anxiety about not doing it correctly. For example, timeouts never worked with my children. I tried this many ways and read how it should work if done correctly. My children just got up any time they pleased. The magnitude of the responsibility, experience, formal hands-on instruction, and guidance were lacking in the raising and guiding of children. The unfortunate first-child syndrome should be labeled experimental-child syndrome, defined as when the parents learn. This critical information about child care and rearing responsibility is transmitted through self-study at home with books, the Internet, and parenting magazines.
The surprises and challenges in life do not end with child rearing. Another hidden reality that goes unspoken is the secret of what actually may happen when we finally get our children to a stage when there is not as much physical and directional work anymore. The kids are more independent, and family activities evolve, so the child and adult become more connected through conversations and negotiations. We dream this day will come, but it arrives with the surprise of yet another unspoken reality for which we may not be prepared.
We become blindsided by the care of Mom and Dad and have no preparation for this monster of new responsibility. We find ourselves fumbling through issues with little guidance. A new, learn-as-you-go experience now faces us when we must care for aging parents.
A typical day for the working family with young children is jam-packed. After a full day of work from 9:00 a.m. to 5:00 p.m., the parents tackle the children's after-school activities that may include soccer games, basketball practice, and gymnastics meets. After these activities, we may require a quick stop at the grocery store before preparing dinner. That is the life of the many baby boomers who juggle kids and work. Just when you think there is no room for any more responsibilities, you are suddenly faced with the task of taking care of your parents.
How do you fit another responsibility into your day? If there was a choice, the time would be spent planning and taking a vacation. However, why bother contemplating a vacation when you now have the additional worry of coordinating the care of your parents when you are out of town?
In the past, people lived shorter lives. However, nutrition and health care have advanced over the years, enabling people to live longer. Previously, the elderly died from heart failure, cancers, and infections that were not treated so progressively. In the new age of more advanced health care, an abundance of healthier foods, and improved diagnostic tests, our bodies may live longer than before.
With so many physical needs addressed by today's health care, why is it that Alzheimer's dementia and memory disorders are more prevalent? As our bodies persevere longer with modern health care, our minds seem to deteriorate. Dementia is the loss of brain function that progresses from mild memory loss ("senior Mom's Losing Her Memory, I'm Losing My Mind! 5 moments") to more severe loss of memory, thought processes, language, judgment, and normal behavior.
In many people, the health of the mind does not keep up with that of the body. The brain may continue to deteriorate faster than the other parts of the body, but the patient receives medication and assistive devices that do not keep the mind working. We often successfully mend the body, but how can we mend the mind? This problem is clearly identified, but it has no solution.
Mom is physically healthy, but as she ages, her brain is dying. As her mind function is lost, she cannot care for herself, and she is unable to learn new skills that are necessary in a constantly changing world. Rarely do you see the elderly in the self-scan checkout line in a grocery store, using a bank machine, speaking on a cell phone, or paying bills online. It is a good day when you do not need to help Mom with the television controls. As technology speeds ahead, the elderly do not keep up, and they cannot manage previously familiar tasks.
Therefore, the adult children must step up and do something to help. In past generations, aging parents would move into their homes. With fewer divorces in the past, and in most cases, mothers at home raising families, the environment was more conducive to taking in the aging parent. Now, stay-at-home moms are rarely at home. They are in the car, driving a constant child shuttle, and in most cases, nobody is at home full-time. Moms are working to attempt to collectively meet the mounting financial needs of raising a family in today's costly and complex society.
For the baby boomer generation, taking in a parent is a much different struggle than in the past, because nobody is at home to watch the parent. Parents might need help, and out of guilt or perhaps a sense of inherited commitment, many adult children try to take their parents into their own homes for assistance and needed care. This challenge most often proves to be a nightmare. Safety becomes an issue; leaving Dad alone in the home becomes the safety equivalent of leaving a toddler at home alone. Now you are the one directing your parent, but arguments and frustrations ensue. Dad may not remember much, but he does remember that he is your parent, and in his mind, you should obey him.
I often meet with adult children or aged spouses who tour the assisted living community where I work. Many times, the spouses say they are looking for something down the road for their partner. As a nurse, I know this often means "until the next crisis." The person may be holding on to the present situation until the next catastrophic event exceeds what they can handle at home. He or she might be functioning in a gray zone of hanging on and getting through the daily tasks of existence at a very basic level of safety and survival. This situation could change suddenly with a fall or health-care event that makes it impossible for this living situation to continue. This may be the catalyst for making a change and finding an alternative care environment for his or her spouse. However, it is best to plan and prepare for this change before a crisis or emergency.
911 or Bust
Several weeks after Judy toured our community, I received a frantic phone call from her. From the panic in her voice, I could tell that her family was in crisis. At the time of the tour, she was casually evaluating the assisted living community as an option for her mother, Ethel. Even if she determined that assisted living would be the best living situation, she felt it might be months before Ethel would need this transition of care.
Ethel was living in Southern California with Judy's brother, Todd, and his family. Todd was doing everything possible to care for their mom at home and thought this was the "right thing" to do. Ethel did not remember what was being done for her from day to day, but she did remember how to call 911. She began to call this number repeatedly to report that she was being "abused." Todd and his young family, who were caring for Ethel, were not abusing her at all, but her poor memory led to delusions that seemed very real to her.
Protective services came to investigate. This was the breaking point for Judy's brother. Ethel was being sent from California to live with Judy, who lived in the Seattle area, as soon as possible. However, if Mom's delusions and dialing 911 continued, Judy also would have protective services at her door.
This situation is very common to many families who are adamant about trying to care for their mom or dad at home. Judy needed to recognize that she could not care for Mom by herself at home and that she needed either extra support at home or a different setting, such as an assisted living community.
Devotion until Death
I first met Claire when I cared for her mother years ago in the assisted living community. During that time, Claire was energetic and full of life. She and her husband, Gordon, used to visit her mother several times each week. Claire loved to join her mother for walks, go out for lunch, or visit late in the evening to join in a game of bingo.
Later, Claire returned to the community because she was caring for her husband, ten years her senior. At first, I did not recognize her because she appeared to have aged considerably. She was much thinner than before and appeared exhausted. Her spark of life and high energy, qualities that I had admired, were missing in the new Claire. She sat in my office, voicing her dedication to her husband and their marriage. However, she realized that caring for Gordon at home was wearing her down, and her health was suffering. She wanted to know my opinion about when she should bring her husband to the assisted living setting. Without hesitation, I said, "Now."
This is a common situation because the spouse caregiver may feel obligated by a marriage vow voiced years ago, and he or she may have a moral bond to the marriage commitment. Some feel the marriage vow is made blindly because of the endless limits of the future unknowns. The spouse caregiver feels she should take care of her declining husband in poor health, even if it now leads to the demise of her own health. "In sickness and in health," as stated in the marriage vows, surely does not mean "to continue with care in the home when that causes a decline in the caregiver's own health."
When saying "I do" and "until death do us part," it generally means "living together forever through life's trials and tribulations." When most couples say the words "I do" under oath, they may envision issues that include broken bones, heart disease, failing eyesight, shared child rearing, and financial challenges. They may envision these joint life challenges to continue through retirement. They may not consider the issues involved in caring for a spouse with dementia or memory loss, including dressing, bathing, and incontinence. Members of the older generations typically feel that they should be living together with their spouse, and they may be reluctant to leave their spouse at a care community. If the marriage contract was revised today, it might be more realistic to say:
"... As you age and become incontinent of bowel and bladder, and your mind deteriorates to the point where you do not remember your spouse or the fact that you are married, you will continue to care for each other. As you age and continue to physically and mentally deteriorate, you will stand by each other in extreme emotional and physical duress and provide for each other's daily care needs. As the care needs spiral down with mental and health inabilities multiplying, you will continue to stay by the side of this declining partner through this hardship until one of you dies first." With a more "true to life" statement, I wonder how many couples would think twice before making this marriage vow.
Claire was exhausted, neglecting her own health and wellbeing out of commitment to caring for her declining husband. She went from caring for her aging mother to caring for her husband. Claire stopped her daily walks that she had previously enjoyed, for fear that something might happen to Gordon when she left him alone, even for a short time. Claire eventually lost contact with her friends because she could not relax when she went out with them, worrying about what Gordon was doing at home alone.
Claire's declining health, as a consequence of caring for her husband, was confirmed when I questioned her. She had obviously lost weight, had high blood pressure, suffered from back pain from lifting, was taking anti-anxiety medication because of stress, and was on antidepressants because she was experiencing extreme sadness. In contrast, Gordon was in great shape because Claire was doing a fantastic job caring for him. She cried out for assistance with her question, "When is a good time to seek assisted living for Gordon?" For this life situation, she had neither instructions nor orientation. Help was past due, and guidance was needed desperately.
There are very few resources with information about how to care for each stage of adult aging and dementia. It is only in these crisis situations when people become aware of the systems and supports available. At these times, people may turn to organizations and specialists for educational support, such as the Alzheimer's Association, local senior services organizations, or hospital-based social workers. When these services are not effective, we find ourselves in the emergency room with Mom or Dad for a health crisis we cannot manage at home.
Our society is very good at putting systems in place for the crisis event. However, we need new systems to best take care of our aging parent in a preventive manner. Health issues can be addressed with appropriate health care to avoid the crisis 911 call and the emergency room visit. Unfortunately, at present, crisis management may be the only available health-care support for the aging parent.
This lack of awareness and direction leaves most people feeling blindsided as they make their way through uncharted territory. There is little direction on how to prevent the many crisis situations that eventually evolve, such as when Dad has delusions and accuses you of stealing his assets, or when you find he has wandered out in the middle of the night and is lost. Most of us are left to fight through our own experiences to figure out how to best provide care for Mom and Dad's safety.
Excerpted from Mom's Losing Her Memory I'm Losing My Mind! by Kathy Jean Stewart. Copyright © 2013 by Kathy Jean Stewart. Excerpted by permission of Balboa Press.
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.
Chapter 1 - Prelude to Dementia.................... 1
Chapter 2 - Embracing the Unknown --Dementia.................... 17
Chapter 3 - Deeper into Dementia.................... 31
Chapter 4 - Early Tactics of Caring.................... 53
Chapter 5 - Behavior and Symptom Management for Memory Loss................ 65
Chapter 6 - Practical Approaches to Daily Care.................... 105
Chapter 7 - Limiting Medications and Improved Health.................... 127
Chapter 8 - The Advocate-- Speaking Up for Mom and Dad.................... 139
Chapter 9 - Family Trials and Tribulations.................... 155
Chapter 10 - The Assisted Living Community--Help beyond Home............... 177
Chapter 11 - Challenges Faced When the End Is Near.................... 201
Chapter 12 - The Reality of the Golden Years.................... 215
Chapter 13 - Dodging Dementia.................... 219
Posted April 13, 2013
My father was diagnosed with Alzheimer's Disease about a year ago. I came across this book the other day and picked it up. Kathy helped me understand memory loss in my dad, how to approach difficult situations and what to expect in the future. I have read the multiple books on memory loss but this one is by far the most helpful by giving practical, direct advice about how to care for my dad. I wish this were out a year ago!!!
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