Facing the Truth of Dementia

Ann H Gabhart Ann's Posts, One Writer's Journal

“Stories can conquer fear, you know. They can make the heart bigger.” ~Ben Okri

A sweet friend sent me this book as a gift. Tracy and I met at a writing conference several years ago and then exchanged e-mails now and again. She has a caring heart, and she has also walked dementia’s road with her mother. We talked about the challenges of caretaking, the sadness of our mothers losing those wonderful family memories, and the sorrow of losing the mothers we knew and loved so well even before they passed on. Somebody once said dementia or Alzheimer’s is the long death. 

Her mother has passed on. My mother is still hanging on, but she’s not doing well. She doesn’t know me anymore, but she still lets me hold her hand and hug her. Most of the time. She still gives me a kiss when I leave. But this last week, she has seemed farther away and I’ve had the feeling that something is wrong. It’s so sad to sit with her and have her look at me with a “please, do something” look. Most of the time I can’t understand what she’s saying and she can’t understand me either. It’s like all the words have been dumped out of a sack and she can no longer sort them out to find the right ones to say or to hear. 

But then Monday when I was there, she suddenly looked up at me and said plain as day, “My back hurts so bad I can barely stand it.” The nurse gave her some medicine, but with my mother’s extensive osteoarthritis, there’s not much that eases the pain. She lived with pain for years. She was tough and able to bear what had to be borne, but that was with memory to give her a reference point. Now each pain is new and unknown since she can’t remember the day or hour before. When I went back Tuesday, she was no better. Nor was she any better today when my sister went, but they did let her lie down and she went to sleep. Perhaps that will rest her back. 

Dementia is such a difficult disease, and so many families are facing the same kinds of hard times that my family is dealing with right now. In the introduction to Living with Alzheimer’s & Other Dementias, Angela Timashenka Geiger of the Alzheimer’s Association says 44 million people worldwide are living with some kind a dementia related illness. I teared up reading the introduction. Not sure I’m brave enough to read the stories. 

Do stories help you deal with problems in your life? 

Many of the stories I’ve written bring a tear to the reader’s eyes. Some of the tears because the story is touching, but some because fiction mirrors real life and sad things happen in life. Mom having to live out her final years with dementia is one of those sad things. It is not what I wanted for her. It is not what she wanted either. She was always so self reliant, so ready to enjoy life. It’s not what I would want for anyone. I just heard of another friend who lived life to the fullest that has been diagnosed with some sort of dementia and is in a facility. Dementia happens and it’s sad. 

The final sentence in Ms. Geiger’s introduction urges all of us to take action in the fight “whether by sharing your experience, speaking up, or spreading the word–so that someday, the only story we have left to write is about the end of Alzheimer’s disease.”