In today's Valley Voices section in The Fresno Bee, Karla Onchi Hutchens writes a poignant profile of her mother's battle with Alzheimer's disease and how it robbed their family of the joy and spirit of her once-vibrant mother. Click here to read this story of how this terrible disease set apart the Hutchens family from other family members and longtime friends.
It took a lot of courage to write this commentary, and we thank Hutchens for telling her story to Bee readers. Here is part of her story:
Mom's personality changed so gradually that no one in the family really noticed. We were all so busy back then, and when she remembered events incorrectly, or didn't remember them at all, no one really thought anything of it.
I cringe now when I think of how frightened and alone she must have felt.The only advice she received from our family was "pull yourself together," or "don't act like that."
Finally, she became verbally combative, and that got everyone's attention. Not understanding and in the midst of my early teens, I rejected her. My father began avoiding what he thought were her "moods." My mother's friends and relatives slowly stopped visiting and withdrew from her. My little sister was lost in the midst of all this with no one to guide her or explain to her what was happening.
Our little family, the four of us, became the black sheep of our extended family, thanks to this disease. My mother was labeled an outcast and the rest of us were considered guilty by association. No one invited us to weddings, graduations or family gatherings, because goodness knows, my mother might do or say something embarrassing and ruin the day.
It is neither meanness nor callousness, but a feeling of total helplessness that usually makes people keep distance from those who suffer from Alzheimer. Kathy Onchi Hutchens did not really grasp that normal social intercourse with people outside the family is no longer an option once the Alzheimer-sufferer has reached the verbally and often physically abusive stage of the dreadful malady. The proper social response would be adequate and compassionate community intervention. But that does not fit in with our concept of ideal capitalism. I shall make it my business to research how the industrialized, socially advanced Euro nations are behaving toward the presently unsolvable medical problem.
Actually, it was the people within our family who failed us, and continue to do so today -- hence the writing of this article. My original article in it's 2500 word entirety expressed perfectly what I was unable to say in a 700 word edited version. The Japanese-American community that my family was a part of in 1969 valued conformity and behavior over compassion, a fact that my 14-year-old self grasped in extremely painful detail. Had my mother been experiencing Alzheimer's in today's world, everything would have been different for her, and for us. Social and cultural attitudes have changed, remarkably so, and we remain grateful for the hard work and perseverance of the medical experts who are working toward a cure.
My family deals with this as my mother in law is in the end stages of Alzheimers. I believe she was the same in that she was slowly changing in the brginning and nobody paid much attention to it. Her daughter and grandchildren won't even come to see her. It is sad to go see her but I just think you never know when she might get a lucid moment. She doesn't know who we are but I can tell we are familiar to her. I always say that the only saving grace of this disease is that they don't know they don't know. Cherish every second for when shes gone shes gone forever.
Ms Karla Hutchins; I meant no disrespect getting your name wrong. I apologize. Names have always been my bane.