Betty and Norman

This is the transcript of a conversation with Betty and Norman, who talk very openly about the frustration of having dementia in their lives. As with many of the interviews we've done in the Cafe, I found myself filled with emotion as I typed this up. Sadness, admiration, anger, amusement. Betty and Norman - their voices are still with me, full of life in its many shades.

Betty: I think carers should come here to the Buddy Café and mix with everyone. A carer needs to get away and do their own thing, but I dunno what to do when he’s gone.

Norman: She does the remembering.

B; He’ll ask me ‘Would you like a cuppa?’ and 99 times he’ll come back and ask – ‘What d’you want again?’

N: If we spoke about something yesterday, I have to ask – ‘What was it all about?’

B: When we first found out about Norman’s dementia, I couldn’t understand at first. It was such a shock to the system. Alzheimer’s! Couldn’t understand what it meant and I still can’t. Four years ago all this lot started, I realised Norman wasn’t the same. Little things. His brother had died with Alzheimer’s and I thought: I hope he’s not going the same way. It gradually went worse. I brought him into the doctor to have a chat and Norman couldn’t remember what he’d asked. I thought: where do we go from here? The doctor didn’t want to seem to do anything more about it and neither did Norman. Eventually got him to hospital. At the hospital, we saw the lady in charge. Norman went in the other room, went for a scan and they sent for us again. Even though I suspected, it was a shock. Alzheimer’s! The doctor said: ‘He can’t drive.’ That was one of the worst things. Hard to accept.

N: It was hard. I’ve got to accept it.

B: Whichever way it comes, blunt or kind, it’s a shock. I’m just taking it each day. Sometimes it’s very frightening, the future, other days it’s hard to know what...

N: Terrible at times. I do, I’ve got it. I still try to fight. To an extent fighting it helps.

B: Don’t let it get you! Fight it! There’s only one winner in this case, it’s the Alzheimer’s. Norman’s fought through cancer. He lost a lung, had a full lung out and got over it. Went to the doctor and came home, then they summoned us again. ‘Bad news, Norman’s got Alzheimer’s.’ It hit me more than Norman, it was such a shock.

N: There was a relief, but I couldn’t understand a great deal. It was hard to accept it. I hate to have to tell someone. Take days as they come, all I can do is accept. Nothing else I can do. I’d love to punch it away.

B: So would I, get things back to normal. The thing is, he blames me for starting it off.

N: Got to blame someone. It was a terrible day. Been terrible everyday since.

B: He blames me.

N: 99 times…

B: He blames me - course you do Norman. A woman asked me ‘Did you question the diagnosis?’ Why should I question a doctor? ...Anyway the carers are the people with all the knowledge because they’ve got all the experience. They’ve got it 24/7. What’s going through my mind is: his brother’s got it, he’s got it – how about his other family? It’s because we’re living longer, isn’t it. Look at me, I’m 80, I feel 80, because of worry. But what can you do? Walk out the door and leave it? I can’t – I married for better or worse. We’ve been married 47 years.

Betty