Running With Dementia

Please re-Tweet if you agree: #dementia may take away the memory, but it cannot take away the love. (image: @allontheboard) #Alzheimers #EndAlz #poetry

Small Charities are the core of the UK’s vibrant Voluntary Sector, supporting millions of people in millions of different ways. This is something we should all feel immensely proud of and protect at all costs. I ❤️ their innovation & fiesty-ness!! #LoveYourSmallCharity

@george_rook I’m afraid George that vanity prevails.

Oh Gawd. Bit more seriousness perhaps?

@RoseMac01 I will post details of the charity’s site soon. It’s expanded so much it now needs a re-write. Thanks for your support.

@DementiaRunning Also, you should put your charity website in your bio so people can check it out and support 💫

A friend advised me to put a white board in Lynn’s room so that her carers could record their daily activities with Lynn, hour by hour. Not only is it informative, it has genuinely helped encourage the nursing home carers to engage with Lynn, instead of just watching over her.

@RoseMac01 Lynn remains settled in the nursing home despite some shortcomings. Now that I am no longer responsible for her full-time care, I treat my visits to the home as a date. Communication isn’t easy but we have a fun time. Otherwise I am busy with the Charity trying to help others.

@DementiaRunning I hope Lynn’s doing well 💫💞 and I hope you’re all okay and looking after yourself 😊

We only need around 90 signatures to make the total 1500 We can then present the petition to Stop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities. - Sign the Petition! Please chng.it/JTc4LbS6 via @UKChange

@GailGre59728262 @UKChange Done!

@george_rook Me too!

The Film I’m angry now. georgerook51.wordpress.com/2024/03/30/the…

I’m not dying, I’m Living with…….. youtu.be/K2MLdX5jYaw?si… via @YouTube Lovely, truthful short film from @GailGre59728262 @alzheimerssoc Take note! Withdraw the film.

@george_rook @YouTube @GailGre59728262 @alzheimerssoc Wonderful. So very true!

It’s been a long time since I tweeted and two and a half years since Lynn was admitted into the Nursing Home. I see her most days and she’s doing okay. But then I looked back at some videos, made last year, of her singing. I’m not sure if that was a good idea?

Should Kate Lee describe Alzheimer’s disease as ‘devastating’? May look it to others, but we go on with living and loving. Just adjusting to change. ‘Devastating’ reinforces and perpetuates the stigma of dementia. We want diagnosis NOT to be devastating theguardian.com/politics/2023/…

We're looking for people to share their experience of NHS continuing healthcare (CHC) to help us build a better picture of how the CHC process works - or doesn't work - for families affected by #dementia. Share your experiences of CHC here: dementiauk.org/get-involved/c…

@SkyCricket @KateLeeCEO @alzheimerssoc I wonder how much of the funds raised by Alzheimer’s Society actually go towards helping support people living with dementia at a grassroots level?

England cricketers are wearing their teammates names in the pre-match line up, to draw attention to confusion often experienced by people living with dementia and how people with dementia lose precious memories. #CricketShouldBeUnforgettable | @alzheimerssoc 💙

It’s been a while since the last tweet. Lynn has been in the nursing home for 21 months now. She remains settled but things could be better. Too much reliance on low paid agency carers; a lack of their proper management; and hardly any diligence.

@KateLeeCEO @alzheimerssoc @DementiaUK Hopefully this coming together will make a real difference to the lives of those with dementia, their families and their friends. 🤞🤞🤞

Just look at this powerhouse! The combined executive teams of @alzheimerssoc and @DementiaUK Some serious plotting with wonderful colleagues. Be afraid Dementia… be very afraid 😱.

We love to hear feedback and moments shared. Our activity books all have a chat section with question prompts. So whether you’re a carer or a family member you can learn something new! 💛 #upandout

Today, we were presented with a cheque for £600. This was the amount collected at the funeral of one of the Time Out Club’s first members with dementia. She was much loved. To honour her, we will stage an annual picnic for all our friends with dementia and their caregivers.

A fellow ex-caregiver told me today that I should put up a whiteboard in Lynn’s room outlining a daily timetable of activities, eg nail painting, head massage, music, hair styling, balloon play, etc. Maybe more effective than the laminated lists of suggestions that I’ve stuck up?