It’s the weight of things that press hard on my heart and soul.

The last book I read from cover to back was “Still Alice.” That was in June of 2012 and two months later my dad was diagnosed with dementia. The book Lisa Genova wrote about early onset Alzheimer’s was my mini prep for the next phase of my life.

Now the book is out on the big screen and I cannot bring myself to watch it. I am living the challenges of dementia as a daughter caring for her father. For two years I have watched my father decline to the executive functioning of a child. And all the while step by step, loss by loss, I know in the deepest corners of my soul that this will be my son Jason’s life in the future.

I have done my research on aging and the brain and on cranial radiation brain trauma. Jason began his toddler years with cognitive impairment from radiation treatments, it only follows that his brain is aging at a more rapid rate than his peers. Pediatric Oncologists are following adult survivors who have received radiation treatments to study the late effect of radiation treatments. The literature coming out is referred to – Cranial Radiation and Early Onset Dementia for Childhood Cancer Survivors.

I have recently seen a  brief preview of “Still Alice” and Julianne Moore  is trying to tell her onscreen husband  that it’s like a part of her brain is dying.

More often than not my son Jason is telling me his memory is getting worse. He has expressed fears that he won’t know me one day. And last week he asked “me who is going to take care of me when I can’t remember how to?”

It’s the weight of things that press hard on me..

 

copyright Sheila Ethier 2015