People don’t know how to talk to people with dementia, they don’t realise we still have our intelligence

‘Alzheimer’s, I thought they said Alzheimer’s that can’t be, I can think, I can function, does this mean I’m going to be put in a home and have to spend the rest of life sitting in a chair in a home where my family would visit me every week, and then that week would go to every fortnight, then every holiday.’

Fear ran through my veins, my blood ran cold, I imagined being still able to think and not being able to communicate with my family, and the only words they would speak to me was “are you OK, you look well” “its nice here, nice and cosy” and then being given a pair of bed socks and a bunch of grapes.

Believe me, there’s a lot rushes through a brain that’s not supposed to be working at this time.

I withdrew into a shell and would stay in bed till late, watch daytime TV (the same things over and over) and go to bed early. This is what I thought you did when you had Alzheimer’s, you could not contribute to society.

I’ve heard it over and over again, You suffer with dementia and that was the one thing that terrified me, that I was going to be suffering all the time, but as time went on I never had any pain, so I asked other people who attend some of the support groups I helped out at if they suffered, without fail everyone of them said they did not suffer.

When I’m in a room full of people I know, I feel the loneliest person in the world, because people will talk over me, around me, about me, But never to me.

Yet when I’m in a room with strangers, they talk to me, until I say the magic words “I’ve got dementia” and hey presto I turn invisible. Yes you gain the power to become invisible when you get diagnosed with dementia.

People don’t know how to talk to people with dementia, they don’t realise we still have our intelligence. You see it with people in wheelchairs, people talk to the chair. With a blind person they speak to the guide dog, but dementia is an invisible illness because we look well.

Tom

This is the third in a series of 3 articles over the last 3 weeks. Please follow: @Memory_Moments to keep posted and to catch up on all the articles.

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