At any support group one becomes dependent on the people there for guidance and friendship. Sometimes they even take the place of family. I experienced many emotions when I discovered how severe the repercussions of Alzheimer’s disease could be for my family.
Each of us mourned the way our spouse’s life had changed. Shock, loss, grief, fear, confusion, ambivalence, guilt, helplessness, despair, sadness and hopelessness were common reactions. I realized that most of my problems in coping with my feelings came from the fact that I had to do this alone.
Noone can avoid regretting hopes and dreams that had become so unrealistic. We learned to forge new, more realiistic dreams. We learned to take one day at a time which was excellent advice. We learned to stop wishing for things to be different and to start coping with the present. We all realized that there was a stigma associated with Alzheimer’s. Many women no longer invited friends to their homes due to embarrassment at how their spouse might behave in front of a guest. Slowly but surely they were shutting out the world from their homes. I did not agree with their approach as having survived schizophrenia I knew that it was not a good idea. So, every week or so, I invited at least two couples over. The men tried to involve my husband in their conversation but when he faded out, they chatted to one another or joined in with the rest of us. At other times a good friend popped in, never for long, but I think it was important.
Athough early identification and treatment of the problem is essential, negative stereotypes deter people from acknowledging the early signs. While the importance of information about physical health is acknowledged far and wide, society’s understanding of
Alzheimer’s disease is far less coprehensive.
Reducing the stigma requires widespread community education plus the willingness to challenge others when discrimination occurs in your presence. Here too, journalists need access to accurate up to date information in order to ensure that ther reporting will not unintentionally reinforce negative stereotypes. Unfortunately, journalists all over the world use terms that often serve to perpetuate the awful stigma associated with this type of dementia.
Most important of all, more and more research has to be done in order to find a cure, not only for Alzheimer’s disease, but for all the brain illnesses out there.