Honesty and, um, niceness

So it’s cool again now. 10.00 in the evening. I’m sitting in the garden at home. The hens are making a row for some reason…hope it’s not a fox moithering. (Shropshire word). Otherwise there’s not a sound.

I’ve spent the best part of two days in Birmingham at a DEEP meet up for Midlands groups’ members. At the very relaxed Woodbrooke Hall, a Quaker Centre. 

What did we do?

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Well about 30 of us shared what we do in our groups to support each other, have fun, and campaign for change. We talked about a new website for DEEP. And about what a newsletter should contain. And, which was really important, how we should work as an organisation or network to address shared issues and campaigning. 

Oh there are such lovely people in the world. Yes, I did say that. Me, a chartered accountant trained to sniff out lies and to distrust what I’m told. Taken me forty years to shake that off!

Well not completely, to be honest. I do distrust what people say unless I sense total honesty and, um, niceness.

But I have made such lovely friends. People I call family. I have two surrogate sisters now, Dory and Wendy. We just click when we meet. They make me want to laugh and cry, relax and sleep happily. (Not together.)

And the two Arachnoids? Rachael and Rachel, such lovely people with principles and values I admire and love to work with. They make us feel valued, important, alive.

So, while there were, and always will be, sadder parts of these days, it has been uplifting. What I cannot quite cope with is the whole day or more of hearing about how awful life can be for people living with dementia. It’s like having a nail knocked into my head, blow by blow, during the day. Reminding me of what might lie in store. 

Away from these meetings it’s easier to ignore IT. The DISEASE. To just do what I do, and not to think about the bad aspects of dementia and the future.

It’s unfair. And I get disturbed by unfairness. We don’t get the support and care we need. It’s different everywhere too. Why the hell isn’t there a standard, legally enforceable model of care across the whole of the UK for people living with dementia and their caregivers? It shouldn’t be optional, post coded! We have a right to equity of care and treatment.

There were some lovely, wonderful poems read out by people during the day. You are so good. Serious poems, silly poems, sad poems. You know who you are. Keep writing for us all, please.

It’s now time to take stock, absorb it all, sit back and breathe in slowly and deeply. And not think for a day or two. 

We need to just be. Between our valiant and brave work to influence change, we need to just…be. 

Remember what we enjoy. Read. Listen. Write. And re-energise till next time. Till our next meeting or blog, or tweet…

Thank you arachnoid twins. From my heart. Thank you.

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