Communication

The loss of communication is one of the most tragic things about Rosemarie's condition, and the frustration of not knowing for certain what is going on with her is agonizing. 

She doesn't try to communicate much. A lot of the time she is totally unresponsive and doesn't seem to recognise me, but every now and then there is a glimmer of communication. I think halving the Donepezil and effectively discontinuing the sleeping tablet has had a positive effect, but not much.

As part of my attempts to record her emotional state in detail I have started categorising the tone of her communication and ignoring the content. Sometimes she will say complete words distinctly - usually "Yes" or "Go away", but most of the time it is the stammering repetition of a single syllable or consonant, which gives no clue at all as to meaning. But the tone or cadence of the communication suggests meaning or at least motivation, and I have tried to set up a way of describing what I take to be the intent of her communication.

I realise how dangerous this is. It is easy to project meaning onto the sounds - animal noises or natural sounds can appear to contain inflection - but it is all I have to work with. I try to use neutral phrases in the example but the inevitable result is I hear a phrase relating to her condition.

There is the type of communication I call Urgent. This has the qualities present when someone says a sentence like "The pipe has burst and there is water all over the floor!" (but I hear "They are hurting me and I can't stop them!"

A similar type, much quieter, is Conspiratorial - "Keep your voice down - they may be listening" ("Nobody is watching - quick, let's go now!")

Intense or Angry - "This is the third time today this has happened!" - ("You have done nothing to help me and just talk platitudes!")

Confused and Frightened - "What is happening? - I don't understand any of this." ("Where am I? Why are you doing this to me?")

Sad (usually accompanied by tears) - "I have lost everything" - ("I'm all alone and there is nobody to help me.")

And rare and precious...

Loving = "I love you"

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And another couple I noticed tonight, (sadly a lot less common these days):

Chatty - "I saw Sue the other day and she told me she has got a new job" - (could be anything)

Humorous - "And he slipped over and poured milk all over himself - it was so funny" - (could be anything)

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This is work in progress and I can see that I will need to refine this. It is a start though, and allows me to record what is at least my interpretation of her mental and emotional state at particular points in the day.

It is so very far from communication, though.