Robert B. Santulli - The Emotional Journey of the Alzheimers Family

The Emotional Journey of the Alzheimers Family

ROBERT B. SANTULLI, MD

KESSTAN BLANDIN, PHD

DARTMOUTH COLLEGE PRESS

HANOVER, NEW HAMPSHIRE

Dartmouth College Press

An imprint of University Press of New England

www.upne.com

2015 Trustees of Dartmouth College

All rights reserved

For permission to reproduce any of the material in this book, contact Permissions, University Press of New England, One Court Street, Suite 250, Lebanon NH 03766; or visit www.upne.com

Library of Congress Cataloging-in-Publication Data

Santulli, Robert B.

The emotional journey of the Alzheimers family / Robert B. Santulli, M.D., Kesstan Blandin, Ph.D.

pages cm

Includes bibliographical references and index.

ISBN 978-1-61168-773-6 (cloth : alk. paper)ISBN 978-1-61168-744-6 (pbk. : alk. paper)ISBN 978-1-61168-745-3 (ebook)

1. Alzheimers diseasePatientsFamily relationships. 2. Alzheimers disease PatientsCare. 3. CaregiversPsychology.

I. Blandin, Kesstan. II. Title.

RC523.S277 2015

616.8'31dc23 2014036572

Acknowledgments

Without a family, man, alone in the world, trembles with the cold.

ANDR MAUROIS

We wish to thank the many Alzheimers families we have come to know and to care about deeply. They have permitted us to describe aspects of their lives here, in order to illuminate the points made in our writing. In all cases, we have changed names and altered identifying features in order to maintain anonymity, but we have attempted at the same time to clearly and accurately describe their struggles so that our words would not be merely dry and theoretical, but brought to life by the real experiences of our patients and their families. In many cases, these are people whom we have treated clinically. In some cases, they are individuals who have attended one of our support groups, educational sessions, or our Memory Caf (Santulli 2013). They are the backbone of this volume in every way.

As we began our work on this book, Rocco DEugenio, one of our close relatives, began to show increasing signs of Alzheimers disease, and he came to live in a local assisted living facility in order to be near us. Our relationship with this delightful man over the years of his illness until his death some months ago has been extremely poignant. He has taught us more about the emotional journey of the Alzheimers family than we have learned in years of clinical work. We are deeply grateful for all that Rocco gave us, both when he was well and when he was ill. We miss him very much, indeed.

We would like to thank Alison Guh for the fine painting that has become the cover of this book. After learning what our work was about, she was able to capture the essence of the vital family relationships very effectively and artistically.

We wish to thank our wonderful editor, Phyllis Deutsch, editor in chief of the University Press of New England. Phyllis has had to endure us for much too long as we tried to write this manuscript, despite being much too busy with our other tasks. As a result, we too often proceeded at a snails pace. Phyllis has been unfailingly kind and extraordinarily helpful with her comments, critiques, and suggestions as we have inched along. She has the patience of a saint.

We would also like to express our appreciation to Mary McLaughlin, writer and blogger, for permitting us to reprint her beautiful post about her father, Zen and the Art of Alzheimers (McLaughlin 2013).

Writing a book with another person is a unique and very gratifying partnership. Our work with each other began with numerous discussions over lunch or coffee, and a mutual affection and respect for the other, personally and professionally. Those feelings have only grown as our work on the book proceeded to its conclusion. We would like to thank each other for the assistance, inspiration, patience, and friendship that each of us has given the other during this project.

Finally, our interest in writing about the Alzheimers family grows directly from our deep connections to our own families and our awareness that there is nothing in life as important as family for comfort, support, help, reassurance, and love as we make our way on our own journeys. We are deeply, deeply grateful to our families.

Introduction

The Importance of Understanding the Familys Emotional and Psychological Experiences

In the United States today, nearly five and a half million individuals suffer from Alzheimers disease, a chronic, progressive illness that affects memory, functioning, mood, personality, and behavior (Alzheimers Association 2014). While there is much research being conducted to determine the cause or causes of Alzheimers disease and to develop treatments more effective than those currently available, there is, at present, no way to prevent the condition, and there is no cure. Once someone has Alzheimers disease, it will gradually worsen until death. Because of the aging of the population, if by the middle of this century no cure or prevention is developed, there may be as many as 15 million sufferers in the United States (Alzheimers Association 2014). Alzheimers disease is an epidemic rapidly reaching crisis proportions.

Much has been written for, or about, the primary caregiver, or to use the term preferred here, care partner. Care partner more accurately captures the complex and reciprocal relationship between the family member and the person with the disease. It is, indeed, a mutual partnership, rather than a relationship that is all give and no take, although it might not always seem that way to overburdened care partners. While there usually is a primary care partner (often a spouse, if there is one), there are almost always several others who are directly involved, and deeply anguished, by the change in the person from a fully functioning, autonomous person to someone profoundly transformed by the ravages of the illness. Those affected include immediate family members living in the same household or nearby, as well as those family members who are geographically removed from the person with the disease but still quite attached and concerned. It also includes friends, close neighbors, and others whose lives are touched in some way by the person with the disease. It is this larger group that is signified by the term Alzheimers family (Santulli 2011), and it is for this larger group that this book has been written. Its purpose is to consider the many ways in which the disease psychologically and emotionally affects the Alzheimers family, in order to develop a deeper understanding of the deep anguish caused by losing a loved one to Alzheimers. We trust that this will also lead to an enhanced ability to adapt to the changed individual and to the enormous burdens of having the disease in ones life. Finally, we hope that this examination of the emotional journey of the Alzheimers family will help the affected family members achieve a greater degree of acceptance of this very challenging situation.

Much of what is written here applies to family members of persons with other types of dementia, as well. From the familys perspective, in particular, there are many similarities between the various types of dementia. This volume should therefore also be quite relevant to those who are family members of persons with non-Alzheimers dementias.

Although there appears to be a significant preponderance of females with the illness (Alzheimers Association 2014), Alzheimers victims and Alzheimers care partners obviously can be either male or female. So throughout this book, the awkward phrases he or she, his or her, himself or herself, and the like, have been avoided, and one or the other gender is used, arbitrarily.

While all chronic, serious illnesses profoundly affect the victims family members, it would seem that the impact of Alzheimers disease on the family is particularly powerful and unique in its characteristics. It is often said that the burdens of this disease fall with even greater weight on the affected family members, compared with the victim himself. It is impossible, of course, to determine who suffers morethe person with the disease or the family. But it is very clear that the loads placed on both are enormous, and the suffering of the family adds immeasurably to the overall misery caused by this illness.