Who on earth are you? (and other difficulties)

It is, of course, the disease underlying my dementia, but I am finding I cannot recognise people whom I have recently met. It’s happened twice in the last week. Both are people who were with me and with whom I spoke at meetings ten days earlier.

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Of course, I just admit I don’t know who they are and ask them to tell me. But it is developing into a habit!

Why am I telling you this?

Because I think there should be an awareness of this as a symptom, and that you may need to remind me and others like me who you are. If I look blank and you are expecting recognition, just quickly tell me your name and where we last met. 

I’ll be working through my back catalogue, paddling furiously under the surface, so my blankness is just me processing data, trying to find a match. Help me out.

….

I was at a meeting this morning about a great neighbourhood wellbeing hubs project in Telford. 25 people sitting in a circle, all speaking quietly in what seemed to be a sound absorbing room. And when introducing themselves there was a sort of reluctant mumbling which meant I couldn’t hear most of them. Yes, I have impaired hearing, or processing, or both, but let’s all speak up a bit. And give me time to work out the words that have just been quickly mumbled…preferably “spoken”. Clearly.

Dementia friendly? Nope, fraid not.

We were planning a neighbourhood event in the summer. Lots of small stalls, activity rooms, loud music…I pointed out that loud music would not work for those living with dementia. Ah. Yes. Agreed. Well we could organise a quiet room. 

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So plwds will be shepherded away on their own? I do hope not. They should be able to take part in activities, art things, cakes, watch and listen and talk. But if their sensory processing is bombarded with loud music they will not be able to. 

We do have a long way to go, don’t we! These good people want to be really inclusive of seldom heard groups, people living with disabilities, and those who do not feel able to access conventional support services. Which includes people living with dementia!

Please make it easier, not harder, for people living with dementia to remain engaged in their communities. Fun events don’t have to be loud!

….

The other thing to say is that I had an eye opening weekend doing DIY with my son. We work well together, him taking the lead, me being the old hand who anticipates what is needed before he has to ask. 

But I noticed several times that he thought up some simple solutions to little problems that I just could not imagine on my own. Like fitting a cut hole in a board for a plug over that plug without taking the plug face off. Dead easy! But I just didn’t see it. Twist the plug face.

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But, like failing to find a simple word answer in the quick crossword, these solutions just doesn’t occur sometimes.

It feels like some new elements of my brain are beginning to fail. I can’t recognise people I met last week. I can’t imagine a simple practical solution to a task.

I don’t actually feel any different at all. But I’m suddenly aware of a failing that demonstrates disease progression.

….

So please, just remember the simple stuff. Remember, if we don’t react as you expect it’s because we are thinking like mad for an explanation of what is in front of us or what we are hearing.

Speak clearly and loud enough for us to hear and understand.

And can that blasted, blasting music!

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One thought on “Who on earth are you? (and other difficulties)

  1. Hi George,
    You can call me anything and if you are looking in my direction then I will probably answer you. If I shouldn’t of answered then just think I have interrupted, been there, got the tea shirt. Looking forward to seeing you all tomorrow at hub. It is my escape from all these idiots that talk to me as if I am mad. Time to feed the dog ugh… I have been known to try feeding him dog food mixed with bird food. Fortunately I found out just in time and had to pick out all the dogs nuts and find another bowl. This was taken calmly by me buy my husband made such a capufful about it. What I do these days is often quite normal to me . Keep going and keep taking the pills.

    Like

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