This is not a post I have wanted to write. I have tried before and failed after the first few lines. It’s not my normal style but it’s for an important cause and one very close to my heart.
My Great-Grandmother lived until she was a hundred. Over the last ten years of her life we saw a gradual decline in her capabilities and her memory until at last she slipped away peacefully with her daughter holding her hand, at home, in her own bed.
This was the first time I saw dementia in any form. I got frustrated by her inability to hold a conversation, by the same question repeated every five minutes and by the way she called us mean when we raised our voices so she could hear us better. As well as the dementia she was also very deaf, so talking to her became a never ending loop of ‘So what news do you have for me?’ ‘Have you got a boyfriend?’ ‘Where’s the other one?’
She never lost her wit though. She could always make a joke.
Two years ago my father’s mother took a fall and fractured a couple of vertebra.
We discovered that she had a problem with her blood pressure. This meant that when she stood up the blood struggled to get up to her head and she went dizzy. Couple this with brittle bones and you find things don’t end very well.
Eventually it was decided by the family and my Grandmother that a nursing home would be the best option.
Visiting her at the first one she was in was the last time I got to see my Grandmother as she was. Before the Alzheimer’s set in properly.
I won’t go into the details of her decline. My Grandmother was always a private woman. Intelligent, resourceful, fiercely independent and braver than anyone I know. At eighteen she left Ireland and her family to move to England and study nursing. She married a man that not all of her family approved of because she loved him and insisted on paying for her own wedding. All through my childhood she was the woman telling me how important education was and how I could be anything I wanted if I worked hard enough. She respected the women who came before her and fought for the vote and women’s rights and wanted her granddaughters to as well. When my Grandfather fell ill she became his principal carer. She was the sort of woman who put family first beyond everything else.
The type of Alzheimer’s she has, stripped all of that away from her. It’s not just loosing your memory, it changes your personality. Her Alzheimer’s brings paranoia, a conviction that ‘the men’ are coming to take her away. It attacks the whole body, not the just the brain. She get tremors in her hands and it can even affect the heart. The predictions for how long she will survive aren’t very optimistic either.
These days she can’t get out of bed, she sleeps more than she is awake and she needs someone to help her almost around the clock.
We’re lucky in some ways though. We got a diagnosis despite my Grandmother’s attempts to fox the doctors who tried to test her. An ex-nurse herself, she already knew what they would be looking for and it wasn’t easy getting her to participate. That diagnosis means we can get her the care she needs and in some ways, we have a better idea of what we have to handle.
What makes my guts twist the most though, is the memory of her telling me that the worst thing she could imagine was ending up trapped inside her own head. Dementia was the worst thing she could imagine.
Unfortunately, the fight against dementia and Alzheimer’s is not one that will help people like her. We’re now fighting to help the people who have not yet reached the point where the memory starts to fail, or their family starts to notice odd little behaviours.
We are fighting for people like ourselves.
But do you know who would be right there with us if she could? My grandmother, never mind her own health.
This is a woman who confronted a MP in the middle of the Houses of Parliaments while on a guided tour to get his answer on why the government was refusing to even consider the possibility of a link between chemicals they had made law must be used in agriculture and nerve diseases in farmers.
She was political, she was opinionated and she didn’t care who heard her. She cared that the important things were said and standing up to fight against the wrongs of the world.
My Grandmother will always inspire me and I miss her, the old her, more than words could possibly describe.