According to the dictionary definition, dementia is:
1. Deterioration of intellectual faculties, such as memory, concentration, and judgment, resulting from an organic disease or a disorder of the brain. It is sometimes accompanied by emotional disturbance and personality changes.
2. Madness; insanity.
According to those of us who watch a loved one go through us, the first is more appropriate, the second is insulting. Personally I think that the second definition only has it’s place in a certain film when a character introduces herself to the Uncle Fester and we see a date about to happen. For me, growing up, dementia was a word the adults whispered behind closed doors. And one I quickly learnt how to define.
Dementia was what Alzheimer’s caused in my grandmother. It was the result of my uncle’s degenerative brain damage. It meant a grown woman who once knew me calling me a lovely girl and a man who used to swing me on his shoulders and take me to feed the ducks wetting the bed every night, up to four times a night.
My grandmother’s name was Mary. When I was little she’d get out her large Lilliput Lane ornaments and the plastic figures and let me play with them. I loved the tiny pottery houses and the plastic figures and would spend hours with them, much to my grandfather’s chagrin. If he’d have let me play with his train set this would not have happened. I’ve told him this many times since growing up and he’s laughed each time.
When Grandad went out, Granny would have me sit at the top of the stairs whilst she read for her clients. She was proficient in divination and taught me too, but Grandad couldn’t stand it and so I acted as lookout. The moment that garden gate swung, away went the divination tools and the teapot was sat on the table. Her clients were mainly her friends and they understood.
Granny encouraged me to sing and to talk to the spirits I’ve seen my entire life. She was my world in many senses. And when she was diagnosed, my world began to fall apart.
My uncle was called Peter, and he was an active man who enjoyed a pint and loved to take me to feed the ducks. He would carry me on his back or shoulders, even when I was seven years old. We spent hours chasing each other in the park and we had so much fun. He didn’t have kids of his own and he loved me like a daughter.
Then he contracted shingles. They attacked his nervous system, went up his spine, caused water on the brain which led to brain damage. Degenerative brain damage. This was just a couple of months before Granny’s diagnosis.
From the age of almost eight years of age, dementia became something I lived with. My uncle moved in with us, my Grandad would inform us of the things Granny was doing that weren’t normal. My uncle would get lost and the police would bring him home. We would wake two or three times a night finding him trying to get out of the house with his urine soaked pajamas on. Both of them if going out alone would have to take a piece of paper in their wallets stating where they lived and who to contact. As my baby brother grew up, my Uncle and my Granny regressed. They lost all sense of themselves.
Shortly after my eleventh birthday, we went to visit my grandparents. Granny couldn’t recognise us. It’s my last memory of my grandmother. A once proud and loving woman sat in a chair, looking frail and unsure, her once lively eyes were hollow. It was the moment I knew she was gone. This wasn’t Granny anymore. Not long after, she attacked Grandad so badly he had no choice but to put her in a care home. My Granny who would have once been too proud for that, went, meekly and childlike to the place she would die.
My Uncle lived, his ability to retain short term memories, gone. Long term memories were harder to let go of, as is common with dementia. He recognised us all and he seemed, for the most part, to enjoy his life. Although getting him to bathe and helping him to shave were becoming harder and harder. He, like my Granny once in the care home had, began to refuse certain foods. They both lost weight. Then my mum died. That was the bottom line. Uncle Peter lost his tie to this world and his deterioration went quickly from there.
The last time I saw him, he too was in a care home. I spent two hours with him. The whole time he believed he was twelve years old and I was his sister, my mother. He called me by her name, he talked slurringly of events that my mother had told me of happening in their childhood as if they were yesterday. And I helped him drink a cup of luke warm tea from a sippy cup and spoon fed him ice cream. Those fine motor skills were gone.
Granny was in her late 60s when she died. Uncle Peter was in his mid 40s. Both died with pneumonia on their death certificate. Granny’s stated Alzheimer’s as another cause, Uncle Peter’s, brain damage. But the truth for those of us who lived with them, was that they had died a long time before.
Dementia isn’t insanity, it’s loss of self. It’s your loved ones standing by and watching, knowing they can do nothing, as you lose what makes you you. It’s the endless nights of wailing, not because you’re insane, but because you’re scared and can’t remember who you are and have wet or soiled yourself. It’s hoarding items not because you collect them, but because you’ve forgotten you had some in the first place. Dementia is the profound impact it has on loved ones. The way those who were children when it occurred pray it doesn’t happen to them in later life. For me it’s meant my will, when written, will have a provision for my brain to be donated to science, especially if dementia occurs.
My relatives now live in the hearts and minds of those that remember them. They cause me to say a prayer each night to whichever deity is listening, that a cure is found, that strides are made in science and that no young girl ever has to hear the words “You’re a lovely girl, you can come again” from the mouth of their grandmother.