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BLOG - Leveling the Playing Field
Posted: Sunday, November 1, 2015 5:55 AM
Joined: 7/24/2015
Posts: 3020

I realize that there is a benefit of participating in numerous groups with others with dementia, and following a number of blogs as well.  Sometimes this gives a wider perspective on what people with Alzheimer's and dementia are thinking, feeling, and going through.  There are surprisingly few of us here in this forum, compared to other social media, and that can give a rather limited view of things.  I thought to share some blog posts so others can see and share in what others are experiencing of life with this disease. I hope you consider following their blogs.


Leveling the Playing Field

Posted on October 14, 2015 by elhijodeveronica     


The response from the partner with dementia

1.He doesn’t give me any space  – I’m quite happy to move away and let her cool off

2.I’m having to lead a double life here – And that’s what annoys me most, you hovering to cover my every mistake, when I don’t always make one.

3.He’s not the person he was. He’s not the man I married. – I have always loved you, even if I don’t remember sometimes. Who is the same person as decades ago?

4.I try to guide and correct him. I want to make him think and do things for himself  – She natters, I feel like the village idiot

5.‘Go and put a sweater on’, I said and he came back with his dressing gown on’ – I go into my room to change as she asked. I know I had to change so I thought it was a good effort. Do I get any credit for that?

6.She’s the cause of all the problems between us. She’s got to accept she has dementia. Me the cause? We should all be allowed to forget things

7.I’ve had to tell a couple of shop workers about her dementia when she wasn’t looking in case she annoyed them. – Are you telling people about me? I didn’t know that. I don’t like the idea of that. You should ask me first. I don’t care if you thought it best.

8.She asks a questions but doesn’t listen to the answer and asks  again. – When I ask him something he always says the same thing. It’s either ‘I’ve told you already’ or ‘you don’t listen’ – so I never actually get an answer’

9.Sometimes she flies off the handle. – I have to be like that. Otherwise I’m nobody.

As above, the responses are valid, loaded with feeling and wholly understandable. The only difference is that these responses are phrases you may not have heard as frequently as the first nine. Why? Because hitherto we’ve stopped at tea and sympathy.

Gradually and necessarily the voice of people with dementia is being heard much more widely through the Dementia Engagement and Empowerment Programme, at local, national and international levels. It is time we put an end to the tea and sympathy approach to ensure parity of representation within the family home for the benefit of all concerned."