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    The Emotional Journey of the Alzheimer's Family
    The Emotional Journey of the Alzheimer's Family
    The Emotional Journey of the Alzheimer's Family
    Ebook263 pages4 hours

    The Emotional Journey of the Alzheimer's Family

    By Robert B. Santulli and Kesstan Blandin

    4.5/5

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    About this ebook

    Alzheimer’s disease is a growing public health crisis. According to the Alzheimer’s Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people—the Alzheimer’s family—undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer’s patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer’s family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.
    LanguageEnglish
    PublisherDartmouth College Press
    Release dateMar 22, 2015
    ISBN9781611687453
    The Emotional Journey of the Alzheimer's Family

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    Reviews for The Emotional Journey of the Alzheimer's Family

    4.5/5

    14 ratings6 reviews

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    • 5/5
      Robert Santulli has written an excellent book on dealling with Alzheimer's disease. It is also good for those dealing with other dementias. His approuch is not too technical but also avoids being emotional. There is practical advice as well as case studies. "The Emotional Journey of the Alzheimer's Family" needs to be read by those dealing with this difficult times.
    • 5/5
      I wish this book was available when we were going through our own emotional Alzheimer's journey with mom. The book is filled with insight into what really happens, what to expect, and how to handle the emotional stress the family faces as they travel through the long and lonely journey of Alzheimer's Disease. Reading the book, which is filled with examples of families that suffered as we did, I could say "That sounds just like us." I'm sure this book will help as we go through the same journey with my sister.
    • 5/5
      This is an extremely well-written and compassionate book on Alzheimer's, and is accessible for practitioners, friends, caretakers, and families alike to understand the creeping and devastating impact--both personal and collateral--that this disease has on so many lives. Essential reading for those who are either going through or knows someone who is going through the scouring effects of Alzheimers.
    • 4/5
      While not precisely a "self-help" book, this volume details the emotional and psychological experiences that result when a family member goes through the lengthy and inevitable deterioration that follows the diagnosis of Alzheimer's disease or similar dementia. I expected that the book would list any number of helpful strategies for coping with an Alzheimer's diagnosis, but found rather that it was descriptive in content. This is not to denigrate the value of the book. I learned some important things about Alzheimer's, about the difference between grief and depression, and about the commonality of emotions that touch most persons tasked with caregiving in this situation. A good basic introduction to the "feelings" that touch the caregivers as they journey through Alzheimer's with the patients.
    • 3/5
      I was very disappointed in the book. The scenarios were quite similar, if not sometimes the same, as scenarios I had read previously in other Alzheimer's books. Interesting, but not much help for the family going thru the pain of Alzheimer's. In my opinion, there are much better books available.
    • 5/5
      The Emotional Journey of the Alzheimer's Family by Santulli & Blandin is the most informative book I have read regarding Alzheimer's and dementia. After dealing first-hand with a loved one with dementia I found the information extremely helpful. This book not only describes the disease but goes into great length to give examples of situations in which a person might be going through. It also gives very helpful tips on how to help those with the disease and also the caregiver. I found that reading this book made me feel as if someone finally understood what I was going through. As if I had someone who could walk me through the tough times. I only wish I would have had this book while I was caring for my loved one with dementia. I believe it would have made life a whole lot easier on us both. I recommend this book not only for those who are caring for someone with the disease but also for doctors and therapists who help care for the caregivers and their loved ones. The more we understand what happens during this scary time the smoother and more joyful the process can become.

    Book preview

    The Emotional Journey of the Alzheimer's Family - Robert B. Santulli

    reviewed.

    Chapter One

    Coping with Discordant Views of the Illness

    In the majority of people with Alzheimer’s disease, the individual with the disease is less aware of the illness, its severity, and its consequences than are members of the family. While there are exceptions to this pattern, there is commonly a significant discordance between the person with the disease and the family member regarding the presence or extent of Alzheimer’s disease. The gulf that so often exists between the family’s view, on the one hand, and the view of the person with the disease, on the other, is one of the most distressing and difficult aspects of the family’s attempt to cope with the illness, particularly in the early stages.

    Factors Leading to Discordance

    Several elements contribute to this discordance. One is simply the memory impairment itself, which is, of course, a hallmark of the disease. The person with Alzheimer’s often cannot recall previous events related to cognitive difficulties. As family members will often say, he forgets that he forgets.

    Patricia had been suffering from Alzheimer’s disease for about five years. She had very poor recent memory and difficulty naming her four children or knowing much about their current lives (marriages, careers, and so forth), even though all lived in the area and visited regularly. From time to time, she would ask for her mother, who had been dead for several decades.

    Patricia had not worked outside the home since her children were born. She had been a good housekeeper, managing the children’s busy school and activity schedules with ease and with enjoyment when they were young.

    Over the past year or more, Patricia pursued very few activities. She refused to go to the local senior center and spent much of the day in front of the television or napping. However, when asked what she did with her time, she would state without hesitation that she spent the day doing housekeeping, including dusting, vacuuming, laundry, and making dinner for her husband, Ted, every night. In reality, she had done none of the housekeeping for the past year at least, other than to occasionally help Ted fold the laundry, and sometimes she would cut vegetables for their dinner salad, under Ted’s close supervision.

    On one occasion, after hearing her outline her supposed activities on a typical day, Ted asked her what type of vacuum cleaner they had. She described an upright version with a long handle. In fact, the vacuum she described may have been one they had many years ago; they now owned a round one that rolled around on the floor, not an upright model. It seemed likely that in describing her typical day, Pat was recalling her activities (and her vacuum cleaner) from many years ago, believing that she was talking about the present, as is so often the case in persons with Alzheimer’s disease. Certainly, she was not consciously telling lies about her current activity; she genuinely believed that what she recalled doing in the more remote past was what she was doing at the present time.

    A second factor contributing to discordance is the use of the defense of denial by the person with Alzheimer’s disease (Ogden and Biebers 2010). This is a common defense mechanism used by all persons, to some degree. Denial is a psychological process that involves the active rejection from consciousness of a painful or frightening reality. People with Alzheimer’s commonly use denial to avoid some of the more emotionally painful and frightening elements of the disease. So do their family members. Denial, as well as other defense mechanisms used by family members is presented in the next chapter. The discordance in the views between the person with Alzheimer’s and the family is often attributed to denial, exclusively, but the process is more complex, including forgetfulness and several other factors, described

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