My grandfather often forgot my name as Alzheimer’s took hold. He later mistook me for a boy and eventually failed to recognize me at all. I was only twelve at the time and very frightened and confused. Have your children -- Lexi (18), Troy (16) and Nathan (10) -- experienced similar emotionally challenging situations with their grandmother (who they call “JG”) and how have you helped them cope? How can fellow "grandchildren of Alzheimer's" learn from your children’s courage?
I’m so proud of my children and their love and tenderness they have shown in dealing with their grandma’s disease. My youngest has never known her without this thief of memories. While they have been gentle and kind, they have also been confused and frightened by my mother’s behaviors and lack of connection. Where is the loving fun JG? I’ve encouraged them to express their feelings and have tried to be honest with them. Each of them has found it helpful to write their feelings and share their emotions (at the Leeza’s Place Web site, for example). It’s part of what we do at Leeza’s Place for all ages whether it’s through scrap booking, support groups, journaling or memory television. The unspoken fears get way too much power if left unexpressed.
I remember being petrified of my grandfather when he erupted into sudden, loud and sometimes violent outbursts in the latter years of his struggle with Alzheimer's. He was so gentle and laid back before the disease. As a young child, I felt guilty for fearing my own grandfather. How can grandchildren (and fellow family members and caregivers) continue to express love and respect for those struggling with Alzheimer's when they're simultaneously feeling scared, confused or even threatened?
My mother gave us so many gifts and so many effective shields to use during her decline. One of them was to tell us, “When I kick and scream and call you names, remember it’s the disease talking and not me.” And while before that I could never imagine my mother being cruel, uttering profanities and calling her children names, when those things occurred, I did have that buffer of her reminder. I think changes in behavior are the most difficult aspects of Alzheimer’s disease. I always tell my children that “love is love”; it transcends memory and a heart never forgets. But it’s incredibly difficult to stay in a loving, safe feeling place when there is a family member with Alzheimer’s disease, becoming aggressive, combative or even violent. When someone has something wrong with their physical body, we can emotionally adjust to that; we understand that something is broken. But when it’s a brain that is not working right and the person looks so normal, it’s hard to remember that they are not responsible for their actions and they can’t control their outbursts. Rule number one is to not take it personally. I think that young children should be monitored and caregivers should be very aware of what is age-appropriate for exposure to a person with Alzheimer’s disease because the behaviors can be so unpredictable.
