It was earlier than usual when my alarm went off yesterday……
When I’d gone to my taxi people to book my taxis for the week, I got to “Monday at 6.30 please’, and a look of horror came over her face when she said how they’d been inundated with airport runs that morning. I suppose it’s the first week where children are back at school so many are flying off for cheaper deals.
She fiddled with the bookings and eventually said they could only pick me up if they can squeeze me in at 06.10….😳…..well better than nothing, but very ‘twirly’……..
It was proper dark when I opened the curtains.The white owl was hooting in the paddock across from my window. I could hear it so clearly but couldn’t catch a glimpse. I switched off my light in the hope I’d see it’s white image swoop through the field, but it wasn’t my lucky morning, as the hooting continued……and I got dressed…..
Turned out I was sharing a taxi with a fellow villager and we trundled the back way through the Westwood with a beautiful sunrise in peaking between the trees….
Being mega early into town, it was earily deserted…..only the paper shop stirring and waking for the day. I didn’t want to sit in a deserted bus station so I ambled up and down the paths outside, waiting for other travellers to arrive to keep me company.
The bus finally arrived and trundled across the Wolds to York…….only for it to come to a halt and to hear those dreaded words….
“I’m having problems with the engine so I’m just getting some advice”……🙈
We finally edged our way towards Pocklington but then had to get off and admit defeat….they’d send a replacement 🙈🙈🙈🤯…..luckily the hoards of school children all decided to get on another one that came for York, that went the long way round. It meant that when ours did turn up, instead of it being chocca there were 6 of us and we made it into York in record time as we didn’t need to keep stopping for the kiddies……
Is it because I rely on public transport all the time or is it because I’m jinxed and unlucky with my trundles……🙄
Anyway….Damian finally pulled up in his car and I slid into the seat, as my body was like a block of ice, and we trundled onto Lidgett Grove and set everything up ready for Minds and Voices AND our new playmates! Whenever a course comes to an end, it always worries me ‘what happens next’…….well, with our course at least people have the option of being able to join Minds and Voices. Not all of them will as some don’t live in York, but they can if they wish.
Everyone started to arrived, new friends and old and we had a full house……..with cackles of laughter and hugs galore………❤️
It was the last day of our course along with a Minds and Voices meeting so our new playmates could get a flavour of our monthly meet up.
Damian started off by going round and we simply said our names. We shared our thoughts about our lovely playmate Liz, who sadly died at the weekend, but we celebrated her smiley face and her cheery disposition……
We also celebrated 5 years of Minds and Voices today…..
We looked back at how the course went and reminded ourselves what each week had been about.
Damian had produced a sheet of what we’d learnt during the course and the comments we’d made.
“Professionals can only learn so much from a book, we’re the experts”
The supporters said “Properly listening to people with dementia helps”
“We can learn from each other’s experience”
“Challenging behaviour is what other people think we do”
“You might not lose all the billions of cells in your brain, but if you lose the one that makes you leave your shopping on the bus, it doesn’t help”
“There’s no danger of us sugar coating dementia, as we all have our wibble moments”
I think I’d got so cold en route today that part of my brain was still thawing. I wasn’t on top form …..but I kept going…..my typing giving me something to focus on….
Damina went through the top tips we came up with…..
On relationships, I said, Living alone is good as it means no one moves things around, and Elaine piped up, ‘well I’ve been married 50 years and Eric has never lifted a finger so nothings been moved for me’…….🤣😂🤣😂
Another theme was around what services should be available or done differently……..so Damian created ‘Our Manifesto’……
Which included:
“We should not be fed doom and gloom and no solutions…”
Professional have historically only dealt with people in the later stages so often find it difficult to understand those in the early stages…….
Our new playmates were then asked to complete another Hope scale form. They did one at the beginning to say how they felt, but were now doing one again to say how they felt now
It was then time to give them their certificates……….and photo time for everyone…..
We finally went round and asked our new playmates what they’d got out of the course:
“It’s been a saviour for me”…..
“Very grateful for it…..”
“Cathartic – Better than keeping it inside”
“Very informative and nice to meet everyone – I’ve really enjoyed it”
And our last comment was a huge smile………….
I ended with:
“I find the wonderful thing about people with dementia coming together is meeting such wonderful new people. Dementia has enabled me to meet soooo many wonderful people that I wouldn’t have met if I hadn’t have been diagnosed with dementia. It’s like a kick in the teeth for dementia as it’s a positive…..”
I had to leave at lunch time for my buses, but everyone stayed for lunch…….hugs, goodbyes and smiles ……..wonderful……exhausting, but wonderful…..
And a nice calm piccie of the River Foss while I was waiting for one of my buses…..
If you are going to carry with your travels maybe you could find someone with a car who enjoys driving. There are a lot of people out there who used the drive people to hospital appointments for just expenses who can’t do it any more because the Health Trusts took it over with their bigger vehicles. Might not be viable but just a thought.
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Have just finished reading your truly inspirational book,,thank you. A copy should be in every staff room of carers of people with dementia whatever their age.
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Very kind of you thank you 🙏 🤗
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Might you be able to get someone to give a link to the HOPE scale? googling gic=ves me Snyder in the late 90’s from USA, but this might not be what is being used in the course.
thanks, Mary
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Ill try 😊
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thank you, no rush, m
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There are some amazing thoughts here, Wendy. Anywhere I can get hold of the Manifesto. Looks like it could be really helpful
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I don’t have an electronic copy of it I’m afraid but if you expand the photo you should be able to copy it 🤗
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I have taken the liberty of typing out the manifesto for others to read more easily, hope no one minds!
A Good Life with Dementia 2019 – Our Manifesto
Our Potential
We are all experts led by experience. Who better to learn from? Professionals can only learn so much from a book. Include us too!
We can share our experience to help each other to avoid some things and find out about others.
Its so good for us to share informations about our won symptoms instead of someone else standing and delivering a pie of facts.
Around the time of diagnosis
Getting a dementia diagnosis at a younger age is traumatic enough, but to have to take so long is doubly frustrating.
There is a lot of immediate attention then the contact stops – its baffling.
Services are providing the wrong things and are not listening to what we are saying about what we need!
Post Diagnosis
IF we’ve got dementia, we need it written down so we can remind ourselves.
We need to be given simple instructions. No-on gives us this, Its ‘ you’ve got dementia now scram! ‘
We should not be fed doom and gloom and no solutions.
The impact on our relationships
It affects us all and we need support as a whole relationship
How much help from services have we received in relation to relationships and the impact on the whole family – NOTHING!
If we get this help early, then it might mean not needing to spend so much on responding to crises
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🙏👍
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