By Julie Fischer, Social Worker, Chicago Public Schools
Please note that this is a personal story submitted by an About.com reader.
A Social Worker's Personal and Professional Reflections on Alzheimer Disease and Autism
Watching my mother struggle with the onslaught of the global losses associated with Alzheimer disease, it is clear the decline of language and the ability to communicate is the most disabling to any individual's sense of sustaining a meaningful life. Similarly, I often think of the autistic child as I bear witness to the daily dissolution of a valued life. The struggle is somewhat different yet the similarities are striking. The goal of communication is to achieve a satisfactory relationship with others and to maintain these relationships. After all, positive relationships are life sustaining. Of course, the autistic child often appears to lack the desire to establish a relationship with anyone and must often be taught how to communicate, as well as, to value the skill. As the Alzheimer patient traverses the stages of the illness, the desire to maintain relationships may endure on some level. However, the ability to respond on even the most basic level systematically disappears leaving the patient an island or in isolation.
Autism occurs at the unfolding of the life course, just as the child is beginning to exhibit important cognitive milestones related to the tasks in the development of socialization and communication. It is these significant skills that are disrupted so perversely by autism. Essentially, the development doesn't occur, so many of the required plateaus are not attained. This leaves only primitive functioning in many areas. What was to be a unique person, may never be known. The child embarks on another, often bizarre journey and the transition frequently seems to occur overnight. "My child was gone, just like that!" Similar statements have been echoed by parents of autistic children I have worked with over the years.
Communication loss in Alzheimer's disease is equally as destructive and adverse, the complete individual stands before us, a known entity, the adult person. The "regression" begins with small annoyances as forgotten names, frequently lost items of daily living, and progresses to the individual lost within their own home after decades of continued residence. A sense of distress and fear gradually replaces the feeling of control, competence, and well-being. What was, will be no more. The journey begins. The struggle to retain communication is most difficult for the Alzheimer patient as well as the family.
The ability to express ideas and feelings, to find commonality, to verbalize needs and indicate understanding of others is a foundation for human relationships. The Alzheimer patient realizes the dark trend and attempts to remain connected. Sometimes performing exercises to recall names at other times remaining silent to camouflage the escalating sense of confusion. I saw my mother repeatedly write family names. I later found lists of clothing, kitchen utensils, schools she had attended, books that were important to her, even Latin and French phrases. She had written, these as she desperately tried to retain the essence of herself.
The tragic and deep sadness in the Alzheimer patients' eyes reflect the realization of overwhelming loss. It seems to permeate the very fiber of the individual. It is heart-breaking to witness and casts a silence on any hope for the future. A conversation becomes excruciating leaving us both, exhausted, frustrated, and angry.
Anger has dogged us during this journey. It forces me to stop and attempt to trace it to its roots. It takes the form of self-pity, as I lose my mother and role reversal becomes the norm. I become angry with her for abdicating her responsibility as the strength of the family, knowing that long ago her task was complete. I'm angry with myself for being unable to do it all graciously and kindly. I'm angry at life for allowing such an illness to occur.
She is angry that she is no longer understood and is no longer "meaningful". She is angry because. just because.
I am aware there are experiences so much worse than helplessly watching as a loved one disappears. This is clearly a horror and an ongoing opportunity to redefine life's purpose.
Memories established in early life seem particularly vivid to my mother. I have a sense of being a voyeur as my mother has related not only memories, but also intimate details of her life, her thoughts of family members, her triumphs, and her disappointments. Alzheimer gradually robbed her of this life-affirming ability to share her life, write her thoughts and attain resolution. She who loved the beauty of words and the nuances of communication was effectively silenced.