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Book excerpt from "Still Giving Kisses: A Guide to Helping and Enjoying the Alzheimer's Victim You Love"

Introduction

I have my story to tell about a failing parent as many others have done before me. At age 78 years my mother, Sarah began to put her fish in the oven without the benefit of a pan and to scorch the cabinet above her ritual candle burning, as she celebrated the Friday night Sabbath.

How I annoyed her when I discretely stuffed all the matchbooks in my pocket and pleaded ignorance when the car wouldn’t start. Many of us middle aged daughters and sons have similar anecdotes to tell. Although my mother is unique, she is following a somewhat predictable path shared currently by many and to be shared by a frightening larger number of baby boomers in the near future. 

There are many books written about Alzheimer’s disease and the other scary dementias: books about what to do when you realize your loved one is driving on the left side of the road and you are not in London, books full of medical facts such as what miracle drugs are on the horizon to dissolve those gooey plaques and tangles. There are books about the legal procedures to avoid poverty when the need for institutionalization becomes as obvious as the iceberg encountered by the Titanic. Then there are the sociological studies that reveal how young nuns who write with multi-syllabic words are less likely to develop the disease fifty years down the pike.

There are books that provide support to the emotionally widowed spouse and books that suggest activities and adaptations that might make life a little easier at home or in a facility. That is, if such a devoted caretaker were available to do more than feed, clean and keep the resident safe. As a health care professional and a daughter my viewpoint is somewhat different.

As an occupational therapist, I am trained to use purposeful activities to promote health, function, independence and self-esteem. For over twenty years I have worked with developmentally disabled children and adults. I never knew that I would use my background to help my own mother. Little did she realize that her financial investment in my graduate school work would benefit us both.

Nor did I foresee that my own mother would become less capable than my clients who could not hold a spoon, speak or point. Yet, I always enjoyed working with these very disabled individuals whom my friends thought depressing and even gross.

I also enjoy visiting my mother. It is sad, but there is no alternative and we still have fun together. As an occupational therapist, I tend to focus on what a person can do and be thankful for that. At the time of this writing my mother recognizes me, smiles when I throw Yiddish words at her and can pucker her lips to indicate that I should place my suntanned cheek next to her dried lips as she performs one of the few remaining independent, yet, highly significant motor acts: kissing.

Let me take you through the difficult and often painful labyrinth that is being a caregiver to a loved one with Alzheimer’s disease. As an occupational therapist, I will share the fun times we had using fairly simple adaptations such as singing from large print song lyrics and many other specific activities to stimulate and support individuals in the home or a facility.