So yesterday I trundled off to York for Week 3 of our ground breaking course, ‘Goof Life with Dementia’ – created by people with dementia, delivered by people with dementia, for those newly diagnosed with dementia……….so proud of the existence of this course and so grateful to Damian Murphy who supports us all at Minds and Voices.
It was my turn to be one of the playmates to be a tutor on the course. We’re all taking it in turns and today it’s me, Eddy, Elaine and Eric.
This weeks session was “Adapting and Accepting” – Sharing how you have adapted with those around you. So we’ll be talking about living alone, living as a couple and how relationships change and develop.
Yesterday, I also noticed that Minds and Voices now have our very own Twitter account!!!! Wonderful…..for those of you on Twitter, you can find us @YorkMandV
Anyway, back to yesterday…….I’m sure I was wearing a T shirt last week……..this week I’m back in my winter coat🙄
My taxi was nice and early and we trundled into Beverley through the Westwood. The town cows have now been let out for the summer and mums were showing their calf’s how to time it perfectly so that traffic had to queue and admire them🤣
The sunshine seems to have deserted us but I arrived in York and Damian picked me up as planned. I was freezing!
We arrived for me to sort out important things…..
And soon after Howard and Sheila arrived. Howard is a new friend from Twitter (@HeavyMetalHarry) and they’d travelled all the way from Sheffield. He is taking part in research too. Research can fill such a gap where no services exists and Howard is loving taking part in research. They came in the hope of checking out our course for them to start one up in Sheffield.
We also had another person who had joined last week. Two people were missing for very good reasons……broken ribs and D&V!!!!
Damian switched the recorder on as it’s then sent to Elisabeth who is evaluating the course.
We all went round to introduce ourselves – we had Rachel, a student nurse from York Uni, who apparently was one of the students I spoke to and today, was chief cuppa tea maker – very important role…..
Today is the first of a 2 parter on Adapting and Accepting focusing on relationships.
Damian went round and asked the ‘pupils’ how they felt since diagnosis.
All the comments were about ‘stopping’ and ‘can’t do’ and ‘guilt’…………so sad………one had had to ‘stop cooking’ as they burnt everything but now just used the microwave……but I pointed out that that’s adapting and doing what you ‘can’ now do…….
There was talk about reversal…..how roles have been reversed for the wife where the husband did everything. Someone said:
“One of the hardest thing is watching my wife driving MY car”
People taking over a once assumed territory………….role reversal…..
Children relating differently to the adult was another comment.
Each couple said, they have to have their own space….
Eric, told us about how it was 11 years of nothing for him and Elaine until they found Minds and Voices……
I spoke about TALKING – how it’s important to talk to share your troubles with partners and children. The conversations become different maybe – of what they’re struggling with, which can be very difficult – for someone who was once seen as strong now having to admit to struggles.
Both parties have to work through things together……..both parties have struggles and have to support one another. I’m always saying how supporter and person with dementia run parallel lives, each are equally important but we have different needs and different struggles. That’s why TALKING is so important – each can still help the other.
“Our confidence takes a bit dive” and the skill lies in combatting that dive……..
“I’m a huge believer in ‘doing’, I said.
Damian then showed a film of Eddie and his wife Pat from Damian’s Getting along course talking about the impact on the relationship of couples where one had dementia.
Services always separate people into carers and people with dementia
But we are always saying when we get a diagnosis, everyone around us gets the diagnosis and everyone needs support to work together and share new feelings. Peoples hopes and aspirations change with a diagnosis and for couples, the future takes on a very different view…….no longer is the idyllic future possible and talking and sharing concerns and working through these thoughts is key.
Sometimes you have to ‘dare to talk and have difficult conversations’
“Change the things you can change, accept the things you can’t” said the wife on the film……wonderful.
It was then time for a cuppa…………and relax………….and for me and Howard to have a piccie for Twitter….
Someone mentioned the importance of a diagnosis.
“A diagnosis enables you to take control of it” said Howard It also enables loved ones to realise there is a reason for behaviours and struggles. A lot of blame goes around. It’s nobody’s fault – brain cells are dying ….but if you don’t have a diagnosis, blame can overtake feelings….
Couples started talking about repetition……..and the supporters wanting to explode even though they know we can’t help it……I piped up…
“Well that’s another advantage of living alone, as I can repeat stuff to myself all day long and not annoy me”🤣
We ended going round and asking the newbies how they find the session……
Howard said…..“You’re all very positive” and his wife said,
“If we’d have had one of these groups when Howard was diagnosed I would have understood it quicker”
Another supporter said…:
“By listening I’ve learnt so much”
Once again…….says it all and shows how vital such a course is for those newly diagnosed…..and it seems that it’s equally beneficial for supporters as well………
Howard has also started to write a blog and wrote this about his visit today..
Had to end with this lovely piccie I took while waiting for Damian…..