the newsletter from the uk network of dementia voices

The Newsletter from the UK Network of Dementia Voices

November/December 2021

Contents:

LikeMinded in Mold and a transport plea from thred ............ Page 6DEEP 10-year festival and Dementia Diaries ....................... Page 7Closing thoughts ........................ Page 8

Dementia and preparing for the unexpected. ......................... Page 2DEEP news ................................ Page 3Getting to know Frances .............. Page 4Christmas shared reading ............ Page 5

No man is a failure who has friends – Mark Twain

Robins became associated with Christmas in Victorian times when the tradition of sending Christmas cards started. Postmen, who wore bright red uniforms, delivered these cards. This earned postmen the nickname of ‘robin’ or ‘redbreast’. Robins mean hope, renewal, and rebirth. It symbolizes new beginnings, and a sign of good things to come. So, it is a lovely symbol to share with all DEEPers as we mark the end of another year. Christmas is not always the best of times. It is also not a festival that we all celebrate. But in the spirit of friendship please accept this gesture. Don’t be alone and don’t feel alone.

A robin stayed by my side over the weekend. I swept up leaves and planted my spring bulbs. All the while the little soul gave me such joy and company as I chatted to it, and it tweeted at me. Happy Christmas (or whatever 25th December is to you). Go gently DEEPers xxx

Thank you to Gail Gregory for the beautiful photograph

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Dementia and preparing for the unexpected

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Here are some concerns people shared:• Pets - who will care for them? • Loneliness - community.• Panic attacks - finding safe spaces. • Dying – being prepared.• Concern for public judgement, being

unable to wear a mask.• Keys - some people had lost or

forgotten keys.• Scams - some people had experienced this.• Becoming a carer - how do we mix both carer/cared for?• Falls - prevention, keeping mobile, what to do after falling.• Being able to call an ambulance. ‘Do I still call 999?’• Medication - keeping doses regular while going to hospital.• People, strangers coming to the door, cold calling.You are not alone with your concerns. This booklet provides you with reassurance and support. Hopefully you will lift some of your anxiety with some practical solutions. ‘Expect the unexpected, your life can change in an instant!’ Martin Robertson The booklet can be downloaded from Scottish Dementia Alumni DEEP group web page.A small print run will be available during December - please contact Paula Brown [email protected] if you would like a copy.

The Alumni group say:We have all experienced unexpected events over the past year or two. We set out to research and discover which urgent support a local authority or health care service should be providing and where you will be able to access this so that you can be prepared. We asked people living with dementia in Scotland about what concerns them and how they prepare. We will share our research widely in order to support others living with dementia to access quality services and to improve communication between people living with dementia and the teams which provide services in emergencies.

The Scottish Dementia Alumni are thrilled to have published their third booklet “Dementia and Preparing for the Unexpected”.

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DEEP news!

New support group for people in ScotlandThe Life Changes Trust has awarded a grant to start a new peer support group. The group will work as partners and contributors to the University of Edinburgh’s ECRED Programme (Edinburgh Centre for Research on the Experience of Dementia).As part of the DEEP network, it will be led by people living with dementia and facilitated by Paula Brown. It is open to anyone living in Scotland with a diagnosis of a dementia or cognitive impairment. Visit the ECRED group page on the DEEP website for more details.Michael from the Bradford University Experts by Experience group came along to a Zoom meeting with Edinburgh to share his experiences. His contribution played a significant part in the development of this new group.

Michael says: It was an honour and great pleasure to take part in this. This email brings into what I always say, I don’t have memory loss, I have misplaced memory. I had forgotten about doing this and then when I read the email all the memory came back. When I see something like this it gives me great pride that I can still contribute.

More Pathways joy on their holiday in LlandudnoI had only seen people on zoom during lockdown. Everyone was accepting of each other and there was such freedom to just be yourself. This was such unique experience for me that I very quickly relaxed and felt included. This has had a deeply moving healing experience. I had freedom to be myself, and absolutely no pressure to do anything or explain myself. Fun and freedom and friends. Jacqui. To read the full article about the Pathways holiday in Llandudno please visit their page on the DEEP website.

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Some of you may know Frances Isaacs from her contributions to Our DEEP News. I was fascinated to see her answers to a ‘Get to really know’ piece in a local magazine. Who knew how important knicker pockets were as a child, and why don’t M&S make knickers with pockets for adults? Does being an adult really mean you have the freedom to be who you are (note to self – I will remember that). Here are some of the questions and Frances’ answers for you and your group which might reveal a few home truths!

A couple of lines to introduce yourself to our readers. Preferably in the third person. Frances moved to the Brecon area in 1994 hoping to settle down for the remainder of her life. She soon settled in village life in Llanfrynach and joined the local WI with some trepidation. But no need! It opened a new world of friendship and fun which she had never imagined possible. Since retirement she has been pursuing her favourite hobby – art.What was your favourite childhood television programme? TV banned in our house!!Name one thing you miss about being a kid: Knicker pockets. Great for hiding things in.Name one thing you love about being an adult: I love freedom to be who I am. If you could be any animal, what would you be and why? I have never wanted this. Ever. If you could have any superpower, what would it be? Strength. What is usually your first thought when you wake up? I thank God I am alive.Most exciting thing you’ve won? I won a booby prize in a National WI jam making contest for my TRAFFIC JAM…. A jar containing loads of miniature toy cars. I got additional marks for the extra wheels, axles and hub caps and was interview by the BBC News where you are.Are you a collector of anything? Does hoarding stuff count?Two lessons life has taught you? Do everything you can to help others while you can. I was diagnosed with a form of dementia a few years ago and now work to help others get through their journey by sharing a love for painting. What makes you grumpy? Don’t get me started!!Have any bad habits? If I were Mary Poppins I could say I am practically perfect in every way. Sadly not the case.Which bad habits drive you crazy? Do you mean one of mine? Or other people? If it’s other people…… picking your nose and inspecting the results.Do you believe in the afterlife? No. If there were my mother would have found a way of telling me off for untidiness.

Frances Isaacs

Getting to know Frances

Christmas shared reading and viewingOn December 15th there will be a shared reading of Christmas stories and poetry session with me (Rachel) and Liz Jennings. This will take place on Zoom between 12.30 and 2.00pm. Please come along and share your favourite Christmas poems or stories. You can book a place by emailing: [email protected]

I thought I would share my top three with you. Every year my brother, who lives in America, reads ‘A Childs Christmas in Wales’ by Dylan Thomas to his American family with a very dodgy Mancunian accent.

Personally, I love revisiting ‘A Christmas Carol’ whether it be the Charles Dickens book or the Muppets film version!

And then there is always the film ‘It’s a Wonderful life’ based on a short story ‘The Greatest Gift’ by Philip Van Doren. This is one that always makes me cry.

One Christmas was so much like another, in those years around the sea-town corner now and out of all sound except the distant speaking of the voices I sometimes hear a moment before sleep, that I can never remember whether it snowed for six days and six nights when I was twelve or whether it snowed for twelve days and twelve nights when I was six.

I will honour Christmas in my heart and try to keep it all the year. I will live in the Past, the Present, and the Future. The Spirits of all Three shall strive within me. I will not shut out the lessons that they teach.

It is a story of facing toughest of life’s problems. The angel, Clarence, comes to show George Bailey how the world would have been if he wasn’t born. Clarence, shows him how many important works he had done in his life and how much worse the world would be without him. At the end of the story, Clarence leaves George a copy of ‘Tom Sawyer’ with the message ‘No man is a failure who has friends’. George’s friends came good.

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Getting to know Frances

More DEEP news

LIKEMINDED in MoldDory is being supported by Outside Lives to start a new group. She writes:“So pleased our new group is starting to take off. We have only been going for 4 weeks, and already we are a group of four ☺. There are Spencer and Ann (pictured with Dory), and Alan and his wife Mabel. We meet at Mold Rugby club and are planning on walks, maybe slow rugby, or other outdoor events on rugby pitch, with permission of course 😂We even had the Mold Mayor come to see what we are about. All enjoying the peer support and friendships made over endless cups of tea/coffee and biscuits.”Dory has just received this news from her local council too! “We just wanted to let you know that we are impressed with your group and we are very keen to support you. We have confirmed we will fund the 3 hrs support you need each week up until March 2022 and then will look to add your project to a grant funding application.”

Transport with thredthred is a UK wide DEEP group. They want to welcome members from other groups in the network to work together. There are many local and national initiatives that groups have been involved with. thred would like to see groups sharing and learning together to bring about standardised support, training and systems.Tommy said “We needed to set up on our own because we were going to lots of meetings but nothing was happening. We need to get transport right for people living with dementia. Health and transport need to work together. Poor transport leads to people becoming

isolated and lonely. We know loneliness is a killer” Please do get in touch and join in with thred to bring the challenge alive across the network. See the thred group page on the DEEP website for contact details

Last month we announced that there will be 12 events across the DEEP network in 2022. These events are part of a festival to celebrate 10 years of DEEP. There is a lot of interest already and loads of wonderful ideas!

10th Anniversary

Celebrating 10 Years

2012 - 2022

The UK Network of Dementia Voices

Anniversary2012 - 2022

We have started to rebuild the Dementia Diaries website. Readers will know that we have been experiencing problems since the late summer. The website had served us well for many years but was beginning to show its age, and ground to a halt in August. We have handed over the reconstruction of the website to the same team responsible for redoing the DEEP website. We are really pleased with how easy and clear to use the DEEP website is now. We know that the same will be true of the revamped Dementia Diaries website. We will be having a major relaunch of Dementia Diaries along with the new site early in the New Year. For now please do keep recording diaries. Even though we’re not able to upload them to the website for now, we can use them in the relaunch.

An update from Steve at Dementia Diaries:

To help you with “perfect planning” Wayne, Lorraine and Dudley have made a short film of Top Tips. This is based on their experience of putting on a group event in 2018. You can see this on the DEEP website.We will have lots of resources and support to help you with your planning. In the meantime….• Are you a cyclist, would you be interested in being part of a DEEP cycle adventure?• Are you interested in a night under the stars? A DEEP camping adventure in North Wales?• Have you a skill you would like to offer to of the groups in the network for an event? Are

you an artist, a cake baker, an organiser or a publicist? • Would you like a slot at or be part of an event but not organise your own? Please get in touch with [email protected]

All diarists are very welcome to attend our weekly dementia diarist ZOOM. It takes place every Wednesday between 10 o’clock and 11.30 in the morning. Zoom invitations are sent out to all diarists early on Wednesday morning. If you’d like more information about that please contact me at [email protected].

DEEP 10 Year Festival

Rachel Niblock – UK Coordinator for the DEEP networkEmail: [email protected] Mobile: 07720 538851

www.dementiavoices.org.uk UK DEEP Network@Innov_Dementia

Closing thoughts

Please get in touch with your news, stories and images. You can: • Post them to: PO Box 616, Exeter EX1 9JB or email them to [email protected] • Telephone them to 07720 538851 or if you are a Dementia Diarist you can record your

news item there.

DEEP is supported and funded by:

Willy Gilder writes: This is my good friend Ruth, in charge of making Fife dementia friendly and all-round good egg. Ruth and I were recently on the same Zoom call, and we were asked about each other. I told of how she is a remarkable enabler. The person who offers lifts and sorts things out. She provides the ‘scaffolding’ that has seen the construction of the extraordinary group that is STAND. After my diagnosis I was put in touch with Gerry (a member of STAND), who invited me along to a meeting… so duly Ruth appeared at my door. Since then, we have shared many journeys, and I treasure our conversations. There are a lot of people who owe her a lot.

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Next month:• More news about The DEEP Festival 2022

• Do you want to say thank you to somebody who does a lot for your group?

• Tell everybody about your group!

• Deadline for items for Our DEEP News:December/January New year edition – Monday 13th December

the newsletter from the uk network of dementia voices

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