Munchausen by dementia

We are definitely not representative

Nope. You’re right. 

We are not typical of people living with dementia.

We are not the usual people who visit GPs and clinics for diagnosis. 

We should be ashamed of such hubris, standing up and talking for people living with dementia.

Of course we have absolutely no right to claim that we know what it’s like.

And indeed, it is highly probable that we have a wrong diagnosis, since we can obviously talk coherently about our lives.

When we go up on stage you should not listen to us.

When we describe our symptoms, don’t believe us. 

We’re lying. Making it up.

We all have a psychiatric condition that makes us need to have an illness to feel important.

Munchausen’s?

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Let’s face it; we are all deluded seekers of headlines and self aggrandisement.

I do agree with you…we should be sitting at home staring out of the window.

Frothy blobs dribbling down or chins onto our shirts and skirts.

We should be unable to eat or drink without help. Unable to speak.

Unable to remember what day it is, or who you are.

So, please do just ignore us. Take no notice.

We don’t fit the mould. 

We are still active in our communities five years after diagnosis. That’s wrong. The diagnosis must be wrong.

We are still travelling around the country. 

We can speak fluently in front of a hundred people.

We look normal. 

It must be wrong.

You told me you cannot believe I have dementia.

You told me you often lose your keys, or forget why you went upstairs.

If you’ve got it, so have I.

And of course, you are right. Spot on. Of course I haven’t got dementia.

I made it up for fun. Because I need to be the centre of attention.

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And because I want benefits and support that without diagnosis I could not get.

Yep…absolutely right. I get so much support you wouldn’t believe it.

Yes I want a blue badge to save me walking so far. Because I am lazy. I just don’t want the hassle of parking with everyone else. And it saves me paying for parking.

It is not because I get lost, or because my wobbles may cause me to fall over.

It is really great fun pretending to have dementia. 

So please remember…

Don’t listen to us.

Take no notice when we say we have bad days, or we cannot answer unexpected questions.

Take no notice when we tell you we cannot see things in front of us, and when we claim we burn ourselves when cooking.

When we say we cannot remember how to tie shoelaces, or fill a kettle.

When we say what you see is not what we are like at home.

You are right. We are not what you see in newspapers or on television.

And of course we have no right to come out in public and ask for support. And care. And help.

What we should be doing is hiding away where you cannot see us.

Then we won’t exist. And you will know that you are quite right.

You can then speak for us. Oh how wonderful that will be. So much easier for us both.

You can then decide what you want to give us. And you can say we are of unsound mind, and cannot make decisions. And you can lock us in, and tie us down, and cosh us with pills. 

Like the good old days. The good old days.

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Well, I have enjoyed our conversation, and I think I now understand. 

Now, where’s the bedroom?

10 thoughts on “Munchausen by dementia

  1. Absolutely spot on George, this is how, through no fault of our own, we are made to feel like, daily!
    Just because we aren’t in the end stages of our diagnosis yet, we aren’t conforming to the misconceptions and myths that are portrayed in the media on a regular basis !

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  2. And George, in the good old days, not so long ago, our care givers could get a good support package that was paid for either by NHS and/or Social Services, now we get no respite care or help at home, both things that support Carers in caring for us, so that we can continue to care for our loved ones as long as we are able. God forbid that we become ill, if that happens, any money/assets that we have accrued over the years for our retirement, is taken from us. Yet anyone that has not helped themselves or those that sell off everything in order that they can enjoy the lifestyle that they have got used to, then it is up to the state to look after them. They whole thing is disgraceful.

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  3. I hear you George. People don’t realise that commonly people are diagnosed with a form of dementia years earlier now, whereas they the image they have of someone with dementia is of a person who is in the final stage of dementia. Also because of the likes of you, Kate Swaffer, Wendy Mitchell and many others everyday we learn what it IS POSSIBLE to continue doing despite a diagnosis of dementia, so keep teaching us George. Take no notice of those who are so badly informed.

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  6. George Rook, thank you for this persuasive story of disbelief. Depression is not dementia, but I get some of the same types of comments: “Yes, I get sad sometimes, too.” My mother, who died from severe, end-stage dementia, ironically used to say to me, “Why should YOU be depressed? I’m the one who should be depressed, NOT YOU! What have YOU ever gone through? And stop taking that damn Prozac–that stuff affects your mind!” George, with all the Prozac I take, 60mg/day, I was shocked to discover that I had lost the ability to cry or feel grief when both my mother and brother died in the same two week period. That is just as scary as forgetting. Although I usually feel quite happy, ecstasy and utter joy are probably no longer part of my emotional repertoire–which is why I am often accused by my own doctors as having a nasty case of “drug-seeking behavior.” True, I would appreciate a nice big dose of Magic Mushrooms once in a while. Just like the “good old days.”

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