By Jessica McGuire
There’s a shed in my back garden. It’s filled with wood and paint and scraps and tools. On one side is a workbench, on the other stacks and stacks of materials. It’s covered from floor to ceiling in odds and ends. It used to be my Grandad’s workshop. It was a place for him to create things that reflected the years he’d lived through and the things he held dear to him. He’d draw horses and create model carts that he’d paint with incredible detail. He’d spend hours out there at a time. I’d go into my grandma’s house and ask, “Where’s Grandad?” even though I already knew the answer: the shed.
The shed hasn’t been used for a long time. Now, it’s part of the backdrop of a beautiful garden that my mum and grandma work on every summer. Even though the door remains locked and it’s hidden partly by blooming flower pots and hanging baskets, it’s still a permanent fixture in the garden. My Grandad has swapped his workbench for an armchair in which he drinks his tea and watches John Wayne films. He’s not the man that used to sit in that shed with a paintbrush in his hand and a heater blaring at 100 degrees.
People tell you how sad it is to know somebody with dementia – and it is sad, but not in the way everyone assumes. It’s a different kind of sadness. My Grandad was diagnosed with dementia quite a few years ago and for a long time it wasn’t something that we spoke of with tears in our eyes. It made us laugh when he’d eat a banana with a spoon, or when he’d put on my grandma’s clothes instead of his own. For a long time we coped. Those afternoons became stories we shared over the dinner table and at family get-togethers. We laughed because we could, because at first his memory loss just skimmed the surface.
Then as time went on, the problems got deeper. He stopped reading the newspaper cover to cover and instead flicked through the pages under 10 seconds. He started to forget the names of family members he hadn’t seen in a while. He forgot which button in his car opened the window and which turned on the AC. He stopped being able to understand conversations and participate in them. He started to forget to take off his pajamas before putting on his day clothes. He started to reach for a packet of cigarettes in his pockets that hadn’t been there for over 10 years. Then he forgot where he lived and asked if he could go home, even though he stood in the very house he’d lived in for 40 years.
It’s after watching someone suffer from memory loss that you realise it’s not about you and how you feel, it’s about them. There’s no way to know how it feels for my Grandad to stand in a house that he’s watched his children grow up in, and then his grandchildren, and for to think that it’s not his own. That it doesn’t belong to him. That those framed photographs and fridge magnets don’t belong to him.
A couple of weeks ago my Grandad donned his coat and cap and set off walking down the street. He said he wanted to go home. He wanted to go back and find his son. My mum got in her car to follow him and I went with her. He hadn’t walked too far, so we pulled up on the street next to him. I got out of the car and asked him to get inside. He did. But when he was asked what he was doing, he started crying and my heart grew heavy.
I’ve only ever seen my Grandad cry once before. I was young and I remember being in my grandma’s kitchen chatting to her. The front door slammed shut signaling the return of my Grandad from the vet. He silently walked into the kitchen with a red face glistening with tears. I was so upset by seeing my Grandad cry that I immediately ran from the house.
This time I was upset, but not in the same way. My heart ached for him as he struggled to keep a grip on reality. How awful it must be for him to not know why we’re chasing him down the street, why we’re taking him back to a house that he didn’t believe was his home.
I don’t feel sad for myself. It’s been such a long time since my Grandad has not been inflicted by this disease that I’ve almost forgotten what he was like before. I can’t miss him if I can’t remember what there is to miss. That’s not what fills my heart with sadness.
There’s so much about knowing someone with dementia that people don’t tell you about – how much sleep you’ll lose, how many times you’ll have to call the police because they’ve gone missing, and how long you’ll spend explaining a conversation to them. The worst of those things is having to helplessly watch someone you love lose a part of themselves every day, unable to do anything about it. I wish words and photos were a strong enough glue to hold together the memories that have been fractured by his disease.
But the most we can do is jump in the car and chase him down the street. Even if doesn’t know it, we’re his family and his home.