Who on earth are you?

In a scene from series three of House of Cards, a supreme court judge with worsening dementia is complemented on the sharpness of his mind.

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He replies that his clerks had written the “opinion” that he had just published.

“Yes, my mind is still sharp. The trouble is, I can’t remember the name of the person standing in front of me.”

I can’t get that out of my mind. Just keeps coming back.

In recent months lots of people have said to me…

No one would ever think you have dementia…

You can still remember all about this…

Sharp as ever…

But then, at the last Shropshire Dementia Action Alliance meeting a lady walked in whom I had met a week or two previously.

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“I’ve met you before but I can’t think who you are.”

She had every right to feel offended, but on reflection probably understood.

And last night I dreamed vividly of being at a university, round a seminar table, unable to remember names, what I’d read, or even decode quickly what was being said.

In recent months I’ve started to wonder whether my diagnosis was right. Have I really got dementia, or just mild impairment and depression?

“Remember, we did all those tests, and we didn’t make the diagnosis lightly,” said my outreach nurse.

I’ve read of others who have had diagnosis confirmed then reversed years later.

But then I see that scene again…I can’t remember the name of the person standing in front of me.

Social groups, interactions, meetings…getting more difficult to tune into and remain tuned.

I take a long long time to catch up if I miss the start of a meeting. Like fifteen minutes to get my head around what is being said, make sense, find the context, work out what has been said before, to make sense of what’s being said now…

Know the feeling?

Last weekend my family and two partners came over. Plus a big lab.

I was overwhelmed after a few hours. Could not cope at all.

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The quick banter, the names, my concerns over getting the food right, keeping the house tidy…

I can do banter, but on my terms, at my instigation. And then I have to drop out.

Half a day great, next day useless.

I felt so bad and guilty for spoiling their weekend, after their efforts and cost to get here.

Their dad a zombie. Elsewhere. Unsmiling.

How long will they want to come?

And so it returns, and reruns, just when you are thinking it’s gone away.

When do I say to family, no you can’t all come together again?

No you can’t have a party here again.

I don’t want to go there, to that lonely place where no one wants to follow.

So I’ll keep trying.

These are the thoughts of a person with dementia who does not want to withdraw (see Kate Swaffer). Who likes the idea of being with people but can’t quite cope with social occasions. Who wants to go out in the evening but can’t stay awake. Who needs routines and the familiar. Who can no longer be arsed with polite chit chat.

A person who has a wealth of experience and a sharp brain, and is frightened of all of this turning to mush.

Normal ageing? At 64? No.

It’s not time yet to give up.

But who is this I’m talking to?

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4 thoughts on “Who on earth are you?

  1. Yesterday for the first time Maureen said that sometime she doesn’t know who I am. I knew this from her behaviour but now she has said it that is different. I have already discouraged crowds of family and they only come in ones and two’s now.

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