Another brilliant piece from a GUNNAS WRITING MASTERCLASS writer
My name is Denise. My mother’s name is Maureen and she has Alzheimer’s. She’s 68 years old.
Alzheimer’s has been an ever present darkness in my family’s life for the past decade. It has tainted every occasion we’ve shared – weddings, anniversaries, graduations, births, every Mother’s Day, Christmas, etc…. We live with the protracted loss and unspeakable grief that comes with caring for my mother, advocating for her, trying to make the decisions she would have made, losing her piece by piece, loving her, missing her, yet wishing for her escape.
I wish I could tell her story, but I would never dare – I have no right. All I have is my piece of her story, my experience of it, the part I know.
Just as I became old enough to start asking the right questions, she stopped being able to answer them. Just as my ‘real’ life was starting, she rapidly lost her ability to enjoy and participate in it. After years of longing and planning for grandchildren, she was scarcely able to enjoy my son. She will never know my unborn daughter. I will never know the wisdom she would certainly have shared once we were both mothers. I feel her absence in moments large and small. She is my mother but no longer my mum.
Something as hideous and destructive as Alzheimer’s should announce itself loudly so you can brace yourself.
It started 12 years ago. At first it crept slowly into our lives. Only with the perfect clarity of retrospect did we recognise the signs. Confusion in car parks, strange reactions to daily events, repeating the same story from yesterday’s phone call. It took a couple of years for the symptoms to become so clear that we could no longer ignore them.
The subtle changes were barely perceptible to people who weren’t us. For a long time mum, like many people living with dementia, was very good at hiding it. Even her closest friends found it hard to believe the diagnosis. Before too long those same friends were so confronted by her decline that they beat a silent but hasty retreat just when they were needed most.
I don’t know where this is going. I don’t know if it’s going anywhere at all. All I know is that I wish there had been something for me to read so I’d felt less alone, benefitted from others lessons and had a clearer sense of what was to come. I guess that’s what I’m trying to write. It’s a start.