Photo above: My Great-Grandmother meets first great-great-grandchild (6 months before death with dementia)
Tru here. How much of the way I have handled my multiple diagnoses and dis-Abilities have been influenced by watching how my father handled his years of cancer, and how my grandmothers handled their dementia symptoms?
GREAT-GRANDMOTHER: I think I was six years old when my 71-year-old great grandmother began living with us for months at a time. We didn’t know she had the very early stages of dementia. We didn’t know why she acted the way she did, but it created havoc in our house. … However we kept trying. Great-grandma showed us love and we showed her love … and we all kept trying year after year of her long visits. It would have been so much better if there was such a thing as a diagnosis of early-stage dementia at that time, or if we could have learned what the symptoms were and what reasonable expectations were, in order to avoid unreasonable expectations. Instead there were many many misunderstandings and false accusations. By seven years later we knew more what to expect, altho we still did not understand why. I was about twelve years old when Great-grandma asked if I wanted to travel with her to Canada. She recognized her own cognitive problems so she knew she would have difficulty traveling on her own. I was young enough that I don’t remember much of the trip, but I remember my surprise when she got lost in the bathroom at the airport.
Great-grandma out-lived two husbands and her children. She died at 87 years old, when I was 21 years old, but she taught me persistence. If one way doesn’t work then you try another way … and you KEEP on trying new ways until you find one that enables you to complete what is necessary. If it is important then you never give up.
Spending time when my great-grandmother was around the family demonstrated how very important it is for those around me to recognize and accept the diagnosis … instead of trying to fit me into the “normal” box where I continually fail to meet expectations. She taught me that just because you forget a name doesn’t mean you forget the essence of the person, and how important that person is to you. She taught me how to keep on keeping on despite dementia symptoms.
GRANDMA: Grammy’s very first symptoms began close to the same year my great-grandmother died, but they were assigned to depression. Symptoms came and went thru the years, but it took many years before they were finally diagnosed as dementia.
Grammy’s challenges with dementia emphasized that the person’s essence remains. She did not recognize her reflection in the mirror, but her character of unselfishness, of time and energy investment in the lives of others was consistently reflected. Her coping strategies changed and her emotions sometimes became hard to manage, but her essence remained. Spending time with Grammy taught the importance of routine. She taught me the impact of consistent FREQUENT contact with those we love. She taught me that there is a language of touch.
FATHER: I was thirteen years old when Dad got cancer and was given two percent chance of life. He died fifteen years later, when I was 28 years old.
I gained tremendous perspective by watching the way he lived those 15 years. His battle taught the importance of transparent communication with Creator, self, and those we love. I learned physical impact of a positive attitude and faith, the priority of keeping personal circumstances within a larger perspective of family and community.
It is not all about me, but despite my challenges and limitations I CAN make a difference in the world around me.
As persons with dementia symptoms, I think it is important to put our symptoms and challenges into a larger perspective. How many children, grandchildren, or others watching us now, will be dealing with these same symptoms in future years?
What will my own children and grandchildren learn from the way I handle my symptoms and challenges? What can I do now in order to ensure they are positive productive lessons … instead of bitterness and fear?
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