This is my dementia. This is my week.

This is my piece for dementia awareness week.

This is my dementia.

This is my week.
…………

Limestone grikes and clints of the Burren, Co. Clare, Ireland - pavements with crisscrossing cracks

Limestone grikes and clints of the Burren, Co. Clare, Ireland – pavements with crisscrossing cracks

Monday

Found an email inviting me to post Dear Dementia notes this week. So I did one.

Later I went to my local hospital’s dementia steering group.

They’ve got the Butterfly scheme, but it needs to be relaunched.

They’ve got This is Me passports, but they’re not being used.

They do 75+ emergency admission dementia assessments but the positives are probably not being followed up by GPs.

They’ve appointed 2 FTE dementia workers, but they spend two thirds of their time doing the above assessments.

They have pink boxes for patients’ hearing aids but only two wards out of 26 (?) use them.

They’re rolling out dementia friends sessions to admin and catering staff…great.

They’re trying, but there isn’t enough resource. Not enough people share the passion for providing the best possible care for patients with dementia.

In the evening I read a piece on Twitter about gardening and dementia. It’s good for us. It’s good for mood, reducing confusion, getting exercise, being in a natural, quiet world of our making.

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Tuesday

Posted my daily dear dementia note.

My community dementia sister for under 65s comes for our three monthly meeting. We have a good chat about how I’ve been, my driving, medication, mood, activity.

We discuss cognitive stimulation sessions that I could attend. We agree no thanks. I get plenty.

I decide to stay on with her service instead of moving to the over 65s community team after my birthday.

Later I get a phone call from the Alzheimers man who runs our SURP group in Shrewsbury. Do I want to attend the Friday’s meeting?

Nope. I’ve been going since it started last year but I’m sorry to say it isn’t doing anything positive for me. Perhaps the six of us are too different in our capacities. Perhaps the subjects for discussion don’t turn me on.

SURP is a great idea. But I think I prefer the Liverpool model, (not that pathway), where they have 40+ people with dementia and carers attend for a social/tea party each month, and from whom reps are chosen or volunteered for local health and social care working groups.

Then I gardened. Planted runner beans, sweet peas and chrysanths.

Felt very good in the evening.

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Wednesday

I’ve posted my Dear Dementia note, for awareness week.

After a walk with the dog around the mere I’m off to the local health economy dementia steering group.

And at the meeting…revolutionary stuff. The chair proposes that a person with dementia and/or carer should chair it! Excellent. Great way of putting patients and carers at the centre of what we do, rather than the organisations.

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Thursday

Posted my note to Dear Dementia. I’m getting quite a few retweets of these.

Off to local hospital to present Dementia Friends session to 20 ish staff and local people.

I’m feeling tired this morning, and I couldn’t find my file of notes and resources before I left, so I got really really grumpy. And I forgot to shave…again. Becoming a regular thing now.

So I wasn’t in the best of places to host a session, my first in four months.

And predictably I got lost in it. Long blanks. What next? What next?

So I went personal, about myself, my brother in law, father in law…and got back into the bits that bring it to life. That matter. What it’s really like.

And what you can do to help people live well. It seemed OK after that.

Later I felt drained, annoyed, and a little paralysed by the first time I’ve really dried in a session. And tired, so tired.

Then I caught the end of a programme about dementia by Angela Rippon. Fascinating bit about how a brain cleans itself during sleep, and another about the benefits of brain work…learning languages in particular.

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Friday

Dear Dementia…done.

Big day today. Long meeting at a local hospital about changing the culture. Followed by another about my appalling hospital care in March after an operation.

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So that’s that. All done.

Tomorrow there’s a Tour De Mentia cycle ride in north Shropshire. I’m doing a dementia friends session at one of the planned stops along the way.

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Saturday

Dear Dementia, six days closer to a cure, six days less till you take me. Which comes first?

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