New research suggests that three million Australians could suffer from dementia by 2050. A blip on the news, a place filler between dead children in Gaza and the pre-Christmas shopping sales (disturbingly given equal billing?!), maybe it went unnoticed by you. But to me dementia is not just a story on the tv news, but an all too-close memory and an ever-lurking fear for the future.
...........................................................................................
A story that goes nowhere, a repeated question, a confused crease in a brow – at first dementia doesn’t seem like much at all; a tired brain showing some cracks after years of keeping on top of things. But it gets worse.
My Grandma W (my dad’s mother) was the first to fall into the incessant sinkhole that is dementia. She was in her 80’s at the time and we were just teenagers. The ramblings of an old woman we sometimes visited, seemed so much less important than whatever ‘boy I love but doesn’t love me back’ melodrama we were currently in. Sure we visited, laughed off her confusion on us being boys because our long hair was tied back, but while her ultimate passing was sad I was self-centred and selfish enough that I didn’t really let it affect me. I was even relieved that I no longer had to go sit in a room with a woman who hadn’t seemed to like me much when she was well, and didn’t even know who I was when she wasn’t.
Looking back it seems so stupid, having already experienced some of the tainted gifts brought by dementia, that I was so unprepared when it claimed my beloved Pop.
Pop was my mum’s father, and besides my dad, the closest male relationship I had in my life. My Pop was always happy, and to be honest, always slightly unhinged. Prone to ridiculous and silly acts, a daydreamer, forgetful, and easily lost, it was sometimes hard to see what was dementia and what was just him. Yet when he became ‘too much’ for my Grandma to look after anymore and he went into a home, it still seemed kind of shocking.
I don’t know if you have ever been into a dementia hospital before but as nice and homey as they try to make it (and full credit to the staff they really make an effort), it is still confronting: Two sets of locked doors to enter, one with a code known only to staff and families, Circular corridors and the view of nearby roads obscured by beautiful gardens so the patient’s forget that they are locked in and freedom exists just over the rose bushes. But most confronting of all is the other patients. Wandering around constantly they are free to roam all over. Some with walking frames, others babbling incoherently in a dialect known only to them, others silent but with a glazed look in their eyes and a stuffed toy clutched to their chest. Mostly women, a few men, and a cruel disease that binds them all.
When I first visited Pop in the dementia ward I was shocked, appalled, he was convinced his stay was just temporary and asked repeatedly when he would be going home. No-one had a straight answer for him. As we left that first time, out of the confines of the air conditioned ‘Last Chance Saloon’ and back into the sunshine, I tried to swallow the lump in my throat and force away the tears that threatened to spill I asked my mum if he really needed to be here. He wasn’t THAT bad surely?
And he didn’t seem to be... until he was.
Despite the best care and therapy, the man I knew as Pop disappeared before my eyes. After a while he stopped following conversation all together, once a great storyteller and someone who loved a ‘good yarn’, conversation became something that happened around him. He would just sit there and occasionally break into song (‘The Man on the Flying Trapeze’ was one of his favourites), which always stopped conversation in its track and the family to share a small sad smile of resignation.
As time passed Pop grew increasingly confused about who we were. I moved away to the city and on monthly visits back he would completely forget who I was, or call me by my mother’s name. Later still it felt like he would just look straight through me, not seeing me at all. I wanted to scream at him, to shake him and yell, “How can you not remember me?! Remember me!! TRY FUCKING HARDER!!” But I never did. I plastered on that smile and tired to pretend everything was ok.
Sometimes he would become irrationally angry. Short sharp outbursts of anger that was so unlike him, yelling at nurses, at us, convinced we were all having a go at him. “Its all just part of it” we would remind each other, “He doesn’t mean it, it’s just the dementia”. Fuck you, dementia.
He became less mobile over time, content to stay in his room, lie on his bed and stare into space. My mum stopped arranging visits out of the hospital. It had gotten too difficult and he was generally just confused and upset anyway. He stopped asking when he was going to go home.
When his wife of over 60 years died, we didn’t even take him to her funeral. All the now-unfamiliar faces of old friends and forgotten family members passing on condolences and trying to talk about ‘old times’ would have just been too much for him to take. Too much for us as well if we are being honest. Though it still didn’t stop my heart from breaking when my mum had to explain multiple times over a plateful of roast Christmas lunch why his wife wasn’t there to join us. She had talked to him about it many times, he just couldn’t remember. Roast turkey has never tasted more like cardboard.
The last few months blurred for me: Pop had a fall. He was heavily medicated. He would only wake for brief periods. He stopped being interested in eating. The nurses took out his false teeth so he wouldn’t swallow them in his sleep. I went to visit a couple of times, sitting for an obligatory hour besides the bed of a man with a sunken face lightly snoring away- I wondered if there was much of Pop even left.
Pop died on a non-descript Thursday morning, he had gone to sleep and didn’t wake up. Just four months after my grandmother and his wife had died. I think he just gave up. I never got to say goodbye. I cried in the shower then went to work.
Sometimes it’s hard to reconcile the Pop that died from the Pop that had lived so strong. But the more we talk about him, laugh at his antics, repeat his stories the more I can remember him as I want to- Full of life, laughing, singing songs, making us toast soldiers, motoring his ancient Land Rover around the steep hills, and swearing at his inept farm dog.
Once again dementia swooped in, left a path of destruction, and flown away again leaving us with the clean up. I want to believe its gone for good, but I know the risk factors, the consequences of family history. No dementia is still there, perched on that tree in the shadows, ever-vigilant, looking for another chance to swoop my family. I’m determined not to let it.
In the meantime we can live to the best we can, stay healthy, and hope that medical research will make a breakthrough. And when we think of Pop we cannot remember the man in the hospital, but the crazy ridiculous man who loved to sing...
