The Alzheimers Family Manual

By Lyle Weinstein

Advice for the Caregiving Journey. For families caring for elders with dementia.

• Language: English
• Publisher: Lyle Weinstein
• Release date: Jan 22, 2018
• ISBN: 9781386915829

Lyle Weinstein

My father started showing signs of Alzheimer's Disease (AD) at the age of 54. He hid them, somewhat successfully, for a few years. My mother took care of him at home for many years - until caring for him became overwhelming. He spent his last years in nursing homes with special Alzheimer's Disease units. In 1992, during his illness, I wrote and produced an audiotape, The Alzheimer's Family Manual, to try to help other families dealing with AD in the family. I was asked to serve on the Board of the Santa Barbara Alzheimer's Association, and in that capacity, I gave talks to caregivers and support groups for a number of years. Not long after my father passed away, I took a break from this work. Now, more than 20 years later, those of my friends who remember that I had done this work in the past – and are dealing with Alzheimer's Disease in their own parents - have started asking me many of the same questions that came up in support groups I worked with: What should they do with the diagnosis and their loved one? The Alzheimer's Family Manual does not purport to be a scientific study of the disease, nor is it a treatise of any kind. The intent was to create a foundation for working with loved ones in the context of this illness – both patients and caregivers, as the diagnosis and its implications are terrifying. I wanted to help enable caregivers, in particular, and their support networks to quickly get up to speed on how to protect their loved ones who have been stricken with AD as well as each other.

Book preview

Table of Contents

Dedication

Preface

Introduction

Part I

The Alzheimer’s Family Manual Audiotape Text

Part II

Caregiving

Caregiving as a Spiritual Discipline

Caregiver Ethics

On Medical Intervention

The Right to Die

Children’s Issues

Part III

My Father

Part IV

Contemplating Alzheimer’s

Afterword

Resources

Preface

My father started showing signs of Alzheimer’s Disease (AD) at the age of 54. He hid them, somewhat successfully, for a few years. My mother took care of him at home for many years—until caring for him became overwhelming. He spent his last years in nursing homes with special Alzheimer’s Disease units.

In 1992, during his illness, I wrote and produced an audiotape, The Alzheimer’s Family Manual, to try to help other families dealing with AD. I was asked to serve on the Board of the Santa Barbara Alzheimer’s Association, and in that capacity, I gave talks to caregivers and support groups for a number of years. Not long after my father passed away, I took a break from this work.

Now, more than 20 years later, those of my friends who remember that I had done this work in the past—and are dealing with Alzheimer’s Disease in their own parents—have started asking me many of the same questions that came up in support groups I worked with: What should they do with the diagnosis and their loved one?

The Alzheimer’s Family Manual does not purport to be a scientific study of the disease, nor is it a treatise of any kind. The intent was to create a foundation for working with loved ones in the context of this illness—both patients and caregivers, as the diagnosis and its implications are terrifying. I wanted to help enable caregivers, in particular, and their support networks to quickly get up to speed on how to protect their loved ones who have been stricken with AD, as well as each other.

Knowing that there are commonalities in patients and caregivers, and knowing that there are differences, please use whatever is in here that works for you at that moment. Set aside the rest, perhaps it will prove helpful at a different point in the journey. If you have insights that have proven helpful, please share them with other AD families directly and/or through the Alzheimer’s Association.

Introduction

My father, Jerry Weinstein, died August 11, 1999 at the age of 70, 14 years after being diagnosed with Alzheimer’s Disease. He was cared for at home by my mother for the first eight of those years. He spent the next few years in different institutions as we tried to match his changing needs to the available care facilities. His last years were spent in a facility designed primarily for mid-stage Alzheimer’s patients. He died there; attended by our family, the staff of the facility, and local hospice workers.

In early 1992, my father went through a tremendously difficult period. It was a combination of the progression of his illness and reactions to different medications he was being given. I returned home after visiting with him for a week. I was both quite upset and depressed that the only relief I was able to provide for him was extremely limited and quite temporary.

I thought about what I might say if any of my friends were to call me up with news that one of their parents had been diagnosed with Alzheimer’s. I sat down and began to type. I tried to put down what I would say about love, caution, fear, and the myriad of other emotions that had arisen for me and my family since my father’s illness was discovered. I imagined myself, perhaps sitting in a quiet corner of a coffee shop, trying to help a friend.

I shared those writings with my siblings and a few close friends. In part, I did so because I needed to have feedback about my own anger and fear, as well as to see whether or not there was anything in the material that might benefit others dealing with the same situation. The result of that process was an audiotape program, The Alzheimer’s Family Manual.

I began to work with both the Ventura and Santa Barbara County, California Alzheimer’s Associations as a volunteer, serving at times as a director for each. Because I lived three thousand miles away from my parents, I was unable to be there for them except by telephone and a few visits each year. In trying to help others who were struggling with Alzheimer’s, I hoped that someone like me, living far from an ill parent, might help others as I was doing, just to keep the cosmic balance.

Each family that encounters AD accumulates their own experiences. My goal in making the audiotape was to organize and pass on my family’s experience so that others might learn, more quickly than we did, what can be helpful in supporting the patient and the caregiver on a day-to-day basis, as well as what can be harmful. I wanted to help others to avoid some of the trials and errors that my family went through.

Without a doubt, the Alzheimer’s Association and the support groups they organize are the most important resource for any family. In most ways, they are a far more important resource than the medical community.

However, my experience was that many people were hesitant to go to the Alzheimer’s Association or to support groups, particularly when the diagnosis is first made. I am confident that this is a terrible mistake. It is when the diagnosis is first made that people need the clear information and the unconditional support provided by the local chapters of the Alzheimer’s Association.

It seems that people first want to deal with the situation as privately as possible, often not even disclosing the diagnosis to other family members or close friends. They usually start reading some of the many important books filled with helpful information. Unfortunately, it is often too hard to read these books when your loved one is asking you where the keys are for the 50th time that morning. It is sometimes overwhelming reading a chapter that describes what is to come as the illness progresses. Too many people have told me that they would get to such a chapter, cry and never open that particular book again.

I thought that hearing a voice talking about how to work with the Alzheimer’s patient on a kitchen sink level might be less intimidating than reading a book. It seemed that an audiotape might be helpful, given how much time people spend in their cars. I tried to lay out basic approaches to help all involved deal with the patient, the caregiver and each other, in a gentle, kind, and sane manner.

The tape was distributed in a limited way. It went to libraries, care facilities, and individuals, as well as different Alzheimer’s Association local chapters. It was available at talks that I gave at local conferences and at support groups. After my father’s death, I took time for myself and limited my formal activities with the Alzheimer’s Association.

About fifteen years later, I started getting an increasing number of phone calls and letters from friends who were now encountering AD in their own families. I spoke to many people on the telephone and tried to give as much help as possible. I sent out the remaining copies of my tape. I began looking over my notes from talks I had given to support groups through the years. I decided to gather those notes and thoughts. This book is the result.

As I am now at an age when my father was already ill, these memories and writings take on a different quality. When I exhibit certain patterns of behavior that were always characterized as funny quirks of my father or grandfather, the need for self-examination arises. What also arises, and becomes more pressing, is the desire to pass on to others whatever I have learned that might be helpful.

This book is quite personal. It is based on the events surrounding my father’s journey with Alzheimer’s Disease, the impact that journey has had, then and now, on me and members of my family, as well as my experience with other patients and caregivers. I hope that whatever I have learned from these events, and from listening to others, will be of benefit.

Part I

The Alzheimer’s Family Manual Audiotape Text

This section is the complete text of The Alzheimer’s Family Manual audiotape, as it was recorded in 1992. Subheadings have been inserted for ease of reference in this written version.

Welcome. This audio program is for families. It’s designed to help you when one of the members of your family is diagnosed with Alzheimer’s Disease. This program will help you to recognize and respond to some of the emotional, psychological, and physical difficulties that both the patient and the primary caregiver will encounter.

My name is Lyle Weinstein. I prepared this program to share with you the experience and understanding my family has developed as a result of caring for my father, who suffers from Alzheimer’s Disease. He was diagnosed with the disease about nine years ago at the age of 56, although he had begun showing symptoms a year or two earlier. Since his diagnosis, my mother, my sisters, myself and our extended families have all been coping with the effects the disease has had on my father and on all of us.

My goal is to pass on what we have learned so that you may learn quickly what can be helpful and what can be harmful in assisting the patient and those who take care of him on a day-to-day basis.

The family of each Alzheimer’s patient has experiences that are similar to the ones my family has gone through. It’s my hope that by listening to this, you will be able to help your loved one without having to go through an extended trial-and-error process as we did.

While it’s impossible to cover every situation, the basic approaches discussed here will help you deal with the patient, the caregiver, and other family members in a beneficial and sane manner. The view presented here is that kindness and simplicity, on both emotional and practical levels, are the key ingredients for helping everyone involved.

The program will guide you in supporting the patient as well as the primary caregiver, the person who spends the most time caring for the patient. Many of the changes that will occur in the life of the patient and the life of the primary caregiver are discussed here. We will also discuss how you can help ease their difficulties and improve the quality of their lives.

Experiment with the recommendations made here, tailor them based on your own experiences. I encourage you to share your experiences, both the successes and failures, with other members of your family, with other caregivers, and with their family members through your local Alzheimer’s Association support groups.

This program is not meant to replace the many helpful books that have been published by experts in this field. Those books cover certain issues, such as choosing a care facility, that cannot be condensed into