Monday, 18 May 2015

Dementia Awareness Week: To-do list

'I've made it this far'. Temporary tattoo, arthur+martha collaboration

We are putting the finishing touches to our forthcoming book 'the warm/&/the cold right now. To mark Dementia Awareness Week, I thought it was a good opportunity to post some of the interviews and poems from it. The following is a moving, powerful account of living with someone in later stages of dementia. It doesn't pull any punches.


What's needed is a to-do list, who to contact, where to go. When your partner's diagnosed you don't know what to do. When F was diagnosed I was lost, all at sea.

F wouldn't accept help off anyone for years. He wouldn't let anyone come in. My daughter had to travel everyday just to see her dad cos he wouldn't let anyone in from Social Services. He said he was OK but I was struggling. Being independent, being a man: 'We can manage.' But it was me, not we.

I've had a heart attack myself. I need a riser to get me out of bed of a morning. It was a struggle. Help him into the bath. It wears you down. He was incontintent, used to cost me a fortune buying pads and underpants.

I could see it slowly come on for years. The last couple of years he was under the impression his younger brothers were upstairs. They weren't. Then he forgot my name and I was 'her who comes in to do jobs'. He didn't know his daughter or grand-daughter. Each time he had a water infection he had a catheter and the dementia went worse.

He'd get frustrated when he couldn't remember words. The garden shed became That Hut. I caught him getting dressed and he was trying to get his legs inside a sweatshirt top. A helluva lot of washing cos of trouble with the catheter. I'd change him four times in a day sometimes. I was upset I couldn't do anything to make him feel better. Felt all at sea. He got very argumentative, not violent though.

They die slowly, they die twice. It is like a bereavement when they get dementia.

It tears you up inside. You feel for them and wish it wasn't happening and God forbid you wish them dead. I've always said if I ever go like that you can have me put down. The last time he had a water infection I sent for the doctor. F was having dinner, a sandwich. I'd put trifle on the table and he finished up dipping his sandwich in the trifle. I cried in front of the doctor, I said he's not like this.

F could give you chapter and verse about being in the Navy during the war, but he couldn't tell you what he'd had for dinner. He used to tell me how they'd greet the ships.

'No flies on me.' temporary tattoo, arthur+martha collaboration.

F didn't make friends easy, but when he did he was a true friend. When he was ill he didn't speak much. He was a gentleman, not a fly-by-night. When the carers came to get him washed he always stood to one side to let them through the door. He wouldn't have gone to the cornershop without getting smartened up, then by the end he looked like a bloody old tramp (cries). When I got the back money I got him new cardigans. I threw the old one in the bin. I'd hide his old clothes with holes in them, then throw them away.

It's not just what's happening to your partner, it's also you and your family. It's like dropping a pebble in a pond, the ripples go riding out. We've all been through the mill. If you've got a best friend, leave your soul to your best friend.

A roller coaster, towards the end, that descent faster and faster. I don't know how I coped, my own doctor said he couldn't have coped. He said I was one of the most organised patients he ever had.

Didn't upset me as much when he died. It was as though he'd practiced it, had a trial run. F started gradual and seemed to snowball. I think there but for the love of God go I. Can happen to the best, or poorest. Don't matter how rich you are, it can come knocking at your door.

'My tomorrows are quite limited.' temporary tattoo. arthur+martha collaboration

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