Dementia some how convinced me I couldn’t….….

I said in yesterdays blog how Covid has done me a favour by allowing me time to walk 5-10 miles a day, therefore building up my fitness. I also mentioned the seed of an idea of walking up Walls Cragg once more, something I thought I would never do again. But after the effort of having to climb Cat Bells for my paraglide, the seed was beginning to flourish and the possibility a reality. The one thing I had to have was the same map as me and Sylvia used to use when we climbed.

 It was years old so I wasn’t sure I would find it. I scoured the shops the day before. All I could find at first was updated versions which took you the other way round and it didn’t make sense to me. I needed the bright cheerful yellow one that told me to look out for landmarks….I’d almost given up when I went into a newsagents and there they were. The Original pack of 5 and the one I wanted tucked nicely inside.

Now I had no excuse not to try 🤩

The morning arrived after weird dreams of decorating Appletrees for Christmas 😳🤣. I never sleep well while I’m away; different bed, different sounds all contributing to me waking every few minutes, or that’s what it feels like 🙄 But finally pulling my curtains back made up for it and filled me with enthusiasm for the day

Map in hand I set off straight after breakfast. The town is relatively quiet at this time as I started at Moot Hall, just as the instructions said and made my way up towards the church and the first right hand turn. It wasn’t long before I became disorientated; these once familiar roads now reducing my sense of direction to confusion. But as I looked across the field I could see the familiar snaking path of Cat Bells in the distance giving me a sense of comfort

Already I needed help by the map as I reached two forks in the path. It told me to head for the gate that would lead into the wood, passing by the familiar farm hut where an image appeared of me and Sylvia sat having an ice cream outside.

The route becoming familiar with each word I read on the bright yellow map. 

“With the stream on the left hand side, follow the stony path up to the landmark transmitter”

The reason I like this map is it tells me the sounds and sights to look out for – landmarks I can identify and follow. The sound of water in my left ear as I climbed the ever increasingly steep slope through the wood

The stream wasn’t visible but clearly audible, every now and then a clearing revealing the stream below, twisting and winding down the hill. I don’t remember such sheer drops but probably the ground has eroded, so extra care had to be taken and my eyes firmly on my boots in some areas.

The path got steeper, strategic gaps allowing me to see Derwentwater below and also the opportunity to catch my breathe.

Many would say, what’s the big deal? It’s an easy walk and I used to think that but hopefully not say it 🤔 I hadn’t realised how unfit I was before Covid. I thought I couldn’t do certain things for other reasons. I’d never experienced being unfit in my life before so I didn’t know what it felt like. I didn’t associate not being able to do certain things, like climb Walls Crag, with being unfit. Dementia had convinced me I couldn’t or I shouldn’t and wasn’t capable anymore. I might become disoriented or get lost it told me. But now I’ve got the upper edge since lockdown made me fitter. Before I’d try, fail and not bother trying which ended up with me not being fit; a vicious circle until Covid came along.

I can often hear voices, blowing across the fells in the wind. I’m never sure if they’re real or not but they’re not frightening. It’s a comfort to know there maybe people nearby. All I’d seen so far are fell runners storming down the rocky paths. 

My own sense of direction used to take me along the right path automatically but as I look around I’m lost again, no sense of where I am or which direction to head. I felt a bit lost on the map when suddenly I saw some people in the distance and decided to follow them.

 They soon went out of sight, much quicker than me, but a man was coming up behind me, so I decided to let him pass and follow him. And so it went on until I found my place on the map again.

This continual incline was becoming to tell on my legs and my breathing was getting harder. I had to resort to counting 50 steps, then taking a rest allowing my breathe to slow down once more.

I found the swing gate identified on the map and turned in. I hadn’t reached the summit yet but the views were spectacular 

The steeper it got, my counting reduced to 20 steps, then taking a break. Rocky footpaths banked by swathes of purple heather. Once again the path seemed narrower and the edge to my right revealing the sheer drop beneath. Over one hump, thinking I was there only to find another steep climb ahead 😳….

The continual uphill walk had now reduced me to a snails pace, but I was sure it wasn’t far to go now. I could see and hear people on the summit ahead of me

As I began to climb the last few rugged rocks, now on all fours, my stick hanging from my wrist and clattering at my side, I suddenly lost my footing. A sharp sting to my cheek and arm as I clutched my camera with my left hand. I’ve fallen into the jagged rocks. My arm taking the brunt of the fall, my face following behind as I tried to protect my camera 🙄🤣🤪. Luckily my camera was fine 🥵….which is more than could be said for my face and arm 🙄

My heart was racing and I stopped a moment for it to regain its composure – shaken and very much stirred.. Out of the silence came more voices, this time from people at the top. Just a few more steps and I was there. Pain forgotten, I climbed up the last few steps. I’d done it 🤩 As I stood looking at the view, my heart calmed immediately. I found the rock I always sit on and studied the view

And what a view…..

A kind man took a photo of me to celebrate the moment. He was with his wife and children and had just asked a man before me to do the same.

As I looked at the instructions I began to feel confused as they didn’t make sense. They spoke of taking me back to the car park below, but I wanted to go to Ashness Bridge. I realised the map was only to Walla Crag. Whether me and Sylvia had simply known the way before, I’m not sure. I could see the family going down the hill and decided to follow them in the hope of not losing them

The path, in fact was clearly marked in the main and I could see roughly where I was heading so I felt confident enough to pass them by as they pointed out Cat Bells to the children

The views continue to be wonderful. 

Eventually I could hear the water running under  Ashness Bridge. This idyllic little bridge with so many memories

I crossed the narrow road and stood on the bridge watching the water tumbling down the rocks

Then headed down underneath to watch it coming through the opening

Heading down the steep hill down to the main road, I felt the sweat dripping down my face. It was at this point an imagine popped into my head of a present Pip had bought me – a roll up water bottle, that I said I would bring with me to make sure I drank on long walks. Very good idea, but only if you remember to pack it 🙄….sorry Pip 🙈

As I reached the main road, crossed  and went down the steps towards the lake, I suddenly felt disorientated again. I needed to go the wrong way round the lake. I always go the other way when I’m walking round it and now it felt all wrong and unfamiliar

I reasoned with myself that if I kept the lake on my left I’d get there eventually. The distraction of seeing mummy duck and her two ducklings took my mind off the disorientation. Not what I was expecting to see 😂

I just couldn’t get my sense of where I was. Through woods with enormous ancient trees reaching for the sky….

…..I needed to find a landmark and within 20 minutes or so, there it was, Milenium stone and further round, through the trees, Millennium bench

Now I relaxed as I knew where I was. About 45 -60 minutes before I’d be back in my room having a well earned cuppa tea…..

Today I learnt that dementia can play tricks with your confidence. It truly convinced me I could no longer climb my favourite fells and by doing so convinced me ‘I couldn’t’. It also convinced me I could no longer walk into town or to Folley lake at home. But luckily Covid came along, gave me time to improve my fitness and now I CAN do all 3……….Wendy 1 Dementia 0 🙌

Book Translations……

Someone asked me recently about which languages my book has been translated into. I decided to take a look on my bookshelf and find out for myself as I’ve forgotten totally 🙄

They usually send me two copies of each, which is why it looks more than it is….

It’s such a wonderful feeling to see my book in so many languages. My name followed by a title that means nothing to me and even more strange to see my name in a different language. Sadly I can’t remember which of the oriental countries this is from, but it’s my name

앤디 미첼

The only book we have outstanding is from the Chinese Mainland and they decided to delay publishing , but have assured us they’re publishing this year and will send me copies when finalised….

These two are my favourite so far…

The UK paperback version because it has my daughters on the cover; the photograph I took of them 30+ years ago on the beach on the east coast on our first trip as a threesome. 

And then the other, which again I’ve forgotten the origin 🙈 but it looks so elegant.

Seems strange how Italy and France are the 2 absent European countries who for whatever reason decided my book wasn’t for their country.

But here’s the selection. I feel very lucky, very privileged, very humbled to have them all

And here’s the list for anyone interested or who may have friends or relatives in these countries…

PUBLISHER	TERRITORY	LANGUAGE
Atlantis	Sweden	Swedish
Chikumashobo Ltd.	Japan	Japanese
Editorial Ariel	Spain	Spanish
Forlaget Olga APS	Denmark	Danish
Ginkgo (Beijing) Book Co., Ltd	China	Chinese (simplified)
Lasten Keskus ja Kirjapaja Oy	Finland	Finnish
Rowohlt Verlag GmbH	Germany	German
SOSO (Ltd.)	Korea	Korean
Sun Color Culture Publishing	Taiwan	Chinese (complex)
Unieboek	Netherlands	Dutch
WYDAWNICTWO JK Jacek Kaszyk	Poland	Polish

Another Experience of Hope……..

The week before last, I had an email which many people are waiting for…..the opportunity to have the Covid Vaccine.

My local NHS Trust, Humber, has many many people who volunteer their time to do all sorts of things, telephone befrienders, drivers, and lately helping out at Gp surgeries that have been under pressure. I’ve written pieces in the past and was part of the team delivering the Trust Induction until Covid struck. I’m also their Research Ambassador. 

Well, as I said, last week we all had an email stating that we could have the Covid vaccine. To say I was excited was an understatement. If I’d have waited until my Gp surgery called me it would have been many weeks, even months before it became my turn. However, the Trust has been using volunteers to help man the car parks and queues for staff to have the vaccine and it was felt necessary to offer the vaccine out to all volunteers, such is the value placed upon them, at the same time as the staff.

It was easy to book the time slot and the venue was at the Trust Headquarters where I deliver my bit of the Induction in the past, so I thankfully knew it well. My time was 17.30 on the Friday. Luckily Gemma was free to drive me.

We’d been told to arrive in plenty of time in case parking was a problem. The evening was foggy, cold and becoming icy so we were there before 5pm allowing plenty of time. The signage was brilliant as were the volunteers on duty that evening. Despite the cold, they were smiley and soooo friendly, telling us exactly what to do. They were running early so luckily I could go straight in.

I followed the instructions and arrows told me where to go, people at every stage beaming with a smile and showing me the next stage. Asking me all the questions, before showing me to the cubicle where an equally smiley nurse showed me to a seat. 

As we went through more checks and she prepared the vaccine,  we chatted and she told me how emotional some people had been on receiving the vaccine.

Many staff have probably been to hell and back during this past year; working extra shifts, looking after Covid patients and seeing many die and even going through Covid themselves. Wanting to protect their families but knowing they had a job to do. My daughter Sarah, is one of them. 

It was a strange feeling as I sat in the resting room afterwards. A combination of staff and volunteers all being monitored to check we were ok afterwards. It was a combination of relief and hope. The vaccination signals a hope that a new future is just around the corner and I felt very privileged to be one of those people sat there post vaccine. 

Thank you Humber NHS Trust……

World Alzheimers day…..

So yesterday was World Alzheimer’s day.

This is my 3rd year where I’ve been aware of this date.. Before it would have passed me by, a date like any other. It’s not until something of such significance comes into your life that you notice an awareness day that is known all over the world.
So why does it make me sad to have come to my third?

Well, what’s changed in 3 years? Maybe more people are listening, maybe more people are aware. More people with dementia are talking openly. We’ve been listened to at the United Nations, thanks to Keith & Philly. All good.
But now many of us have lost our Personal Independence Payment; we still have a post code lottery of services; we still have no new medication; we’re still banging on about the same things. It really must be frustrating for people like the wonderful Kate Swaffer in Australia and the equally lovely Agnes Houston in Scotland, who were talking about the same subjects long before I came on the scene.

I realise change takes time, but time is one thing not on our side. All the positive acknowledgements, positive comments will only make a difference if this is turned into a change of actions, a change of practice and a change of attitude.

So come on world, let’s turns words into actions this World Alzheimer’s day so that next year we may have more to celebrate.

First meeting of the Three Nations Dementia Working Group

Friday saw me on the silly o’clock train to London. The first one of the day. I was heading for the new offices of the Alzheimers society as Matt Murray, Engagement & Participation Manager, had invited me to attend the first meeting of the 3 Nations dementia working group for people with dementia.
The group is a standalone, independent group of people with dementia which is funded by and provided with administrative support from the Alzheimer’s Society.

Members are from Ireland, Wales and England as Scotland already has it’s own successful group and lots has been learnt from that group.

I was looking forward to seeing old friends and new as there would be a representative from each of the society regions. Mine being Yorkshire and Humber.

It was a very dark mild morning when the taxi arrived – on time- and the train arrived –on time – both most unusual for me! I know it will get light soon, but I do hate travelling in the dark.
So the only picture I could take is of Billy on my stick…….

But at last the sun began to rise…..and suddenly the outside world began to look much friendlier through the window and I could take my photos.

So now I can start to relax…..

When I got to the new office, Matt was luckily downstairs in the lobby and I spied him through the window. Upstairs there was lots of new and old friends. And I managed to get a copy of the new magazine with me on the front looking all serious, but inside was a lovely photo of me and the girls.

You can read the article here

https://www.alzheimers.org.uk/info/20203/febmar_2017/865/here_and_now

So many lovely, friends, new and old were in the room.

Chris Roberts opened up the session. Scotland, Alzheimers Europe, Japan, Ireland and other countries have their own working group and we’ve been behind in setting one up for us.

This meeting was just testing the water and setting the guidelines and expectations and gave us a chance to meet each other, which was lovely.

Brett Terry – ‎Director of People and Organisational Development, was there to show that the society is fully behind us and committed and he gave me 2 wonderful quotes.
He said he hoped the aim of the group was to ‘Lead and galvanise the dementia movement’
and
‘Showing people its not just about having a voice it’s about being valued.’ Sums it up really.

Matt Murray has tirelessly worked for us and is one of the good guys in the society who we all trust. There’s an awful lot of bridge building to take place with some of the local offices, which came out loud and clear from many of us, including me. We need the enthusiasm of head office in London, which is there in bucket loads, to be replicated in the local offices and hopefully Matt will be able to help us with this.

We then started to to discuss the name of the group and we agreed on:

‘ Three Nations Dementia Working Group’

Lunch time was more than welcome as we had soooo much to get through and my brain was becoming fried. Good opportunity for a piccie of all the people with dementia  though….

As I said, the group isn’t launched until May and we’re still in the early stages. We don’t have any answers yet, but we’d like to encourage anyone with dementia to come up with ideas or just get involved by getting in touch.. This was our first meeting and it is very much a work in progress

We hope it will be launched in Dementia awareness week at the society’s main conference in May, which this year, will also be centre stage for its new branding. The following day will be the annual research network conference.

We want to try to involve as many people as possible so if anyone with dementia would like to hear more or contribute in any way, you can always email me and I’ll put you in touch with the person in your region who was present today. They’ll be really pleased to hear from you.

Obviously if you’re in my region, I’ll be even more pleased to hear from you!😊

My email is wendy7713@icloud.com

I’m not convinced that I’m the right person for this as I’m not very good at ‘campaigning’ as such.
I raise awareness through my writing and talking in a different way. I’ll give it a go but if it appeals to anyone out there with dementia and who lives in Yorkshire and Humber, just let me know. We want to help new people with dementia become involved and give you the confidence and support you need.

My head was banging by the end, but it was a momentous day for us all as it felt like the start of something big………..

p.s watch out for another blog Tomorrow detailing my journey home……🙄

2 years this week since I started my blog……

October 25th 2014 was the first day I started writing my blog – boy, what a lot has happened in 2 years – and I’ve met so many amazing people who I wouldn’t have had the opportunity to meet if I hadn’t been diagnosed with dementia, so every cloud………………here’s what I wrote 2 years ago………

 

Today is the first day of recording my daily ramblings of living with dementia. Why today? Well, my experiences up until now have always been as though Alzheimer’s was in the future. This week has been a bad week and I’ve realised that Alzheimer’s is now part of (and increasingly encroaching on) my life. So today seems as good a day as any to acknowledge the need to learn to live with it and adapt my life with each challenge it throws at me.

Will anyone read this? Maybe, maybe not. The purpose of venturing into this whole new world is to allow me a way to record what it’s like to live with dementia as the condition takes hold. To write my thoughts, experiences and views. I think both academics and professionals in all fields – cause, cure, care and prevention- could find my ramblings a useful insight into the reality of day to day living with Alzheimer’s. Others may find they too have similar experiences which lead to the acknowledgement that they are not alone. However, if the only purpose it serves is the ability to give me the opportunity to empty my head of thoughts and tangles in order to make room for new thoughts, then it will have been a useful exercise.

Launch of the Butterfly Scheme at Beverley Community Hospital

On Monday I was asked to give a short talk to staff at Beverley Community hospital following the launch of their Butterfly scheme.

I’ve been involved with this small community hospital since I moved into the area as they realised that, although this is a new building, they got some things very wrong with regard to the design. I’d been working with them along with Emma Williams (from Dementia Action Alliance) to put together a list of the issues that needed resolving.

Today was a staff engagement day to promote the launch of their Butterfly scheme as well as highlight all the other work taking place around dementia awareness..

We needed to get staff on board and up to speed before a public engagement afternoon in April. I’ve heard many people speak against the Butterfly scheme; the main reason they give is that it distinguishes people with dementia from the rest of the patients on the ward. I believe that anything that makes healthcare professionals stop and consider the challenges, is a positive move. If I was on the ward I’d be happy to have a Butterfly highlighting the need to be more patient, for the simple reason I love Butterflies – you can’t see our disability. I’d probably be asking for a specific colour!

Obviously there will be some people or loved ones who don’t want it highlighted – that’s simply their personal choice.

The locality matron, Carol Wilson introduced the launch. She quoted stats from the recent Fix Dementia Care initiative that 60% of people surveyed felt the person with dementia wasn’t treated with dignity or understanding in hospital – shocking.

She spoke of the Dementia training pathway which is currently being set up for staff – and they have already implemented ‘ Johns campaign’.
There’s a major environmental assessment being undertaken at the mo which I’m involved with.
Janet Mcdougall – Training Facilitator was up next.
She informed us that the ‘Butterfly’ can be on the board, wrist band, medical or nursing records – it’s discreet and identifies to staff the need for the be aware that this person may need extra support. She spoke about the good new work being done at the hospital.

Hopefully one day, in the not too distant future ‘discreet’ will be unecessary as there will be no stigma attached to a diagnosis of dementia……….

There are 2 types of butterfly – Filled in butterfly signifies those diagnosed
Outline of a Butterfly is for those undiagnosed with memory impairment who may need extra support

She showed us the ‘Reach out to me’ sheet, which is a document with likes and dislikes, for example, am I left or right – handed – do I prefer mug or beaker ?etc.

Wherever the scheme has been offered it’s had 100% take up.It’s not seen as an alert system, rather it’s a sign for staff – ‘you need to be aware’.

Jayne and Mandy from the community ward, Deputy Charge Nurse and Associate Practitioner, nervously took the stage next to highlight the work they’ve been doing to embed it on the ward.

They stressed that everyone needs to know – from kitchen staff to doctors, volunteers to out patients – yeh!– it’s a discreet butterfly that denotes that person may need extra support.

Emma then presented them with their DAA Certificate.

Camera shy recipients!

Emma then went through what DAA means. East Riding DAA is one years old this week and thanks to Emma’s amazing work, 65 local organisations have signed up.
The audience had people from the community teams as well as the ward and Emma asked them all to promote our DIGER group.

I then spoke for a while around the Importance of involving people with dementia and their supporters in community projects such as this.

I spoke of the fact that people with dementia may forget on a regular basis why they’re in hospital. They then become anxious and then staff consider them to be ‘challenging patients’ which really annoys me. I often refer to ‘challenging staff’ in defence of the behaviour. Because If staff understood the situation, were aware who had dementia and had an understanding of dementia, they would know how to calm the person, how to make them feel safe, how to deal with their anxiety. This can only be recognised immediately if there’s some way of instantly identifying that the person has dementia. Hence the Butterfly! Some people have said, but why should we single people out with a Butterfly – some people may be embarrassed? My answer to that is ”

“We have a complex brain disease. why should we be embarrassed?”

Obviously some may prefer not to identify themselves or a loved one but If it helps to get the patient the best possible care why shouldn’t it be seen as a way of providing patient centred care.

It was a good meeting and I’m so glad that the hospital is racing along with their plans and putting into action all they said they want to achieve – very refreshing and BIG brownie point to Janet Woodhouse (Nurse Consultant) and all the team.

 

National Young Onset Steering Group Meeting – Part 2

Following from yesterdays blog, here’s the final one about my first meeting as a member of the National Young Onset Steering Group.

I soon realised that I’d misunderstood the purpose of the group. I had it in my mind that they were developing a support network for people with young onset. I’d concentrated on the word ‘network’ instead of ‘steering group’. Nada Savitch was at the meeting and soon put me right. Now I understand 😊

A diagnosis in someone under 65 has a different impact than that of later life and which is not currently catered for routinely in services nationwide. The aim of the group is to influence change through influencing policies and improve services nationally. The Steering group is just the start of the network.

A national development manager for Young Dementia UK will start in post in January 2016. Esme Fairburn and Henry Smith charities have funded the post – the successful applicant was Sarah Plummer so look forward to meeting her in due course.
A major part of their role will be to support the steering group. They will also connect with diagnostic clinics “so that people with young onset find out quickly about the network and know they can belong to a supportive community within the UK.” Those diagnosed who want to influence changes in their local area or nationally will then have access to a network of people who can support them in doing this.

There’s plans afoot for a Young Onset dementia conference in late September 2016 which is promising. We need to make sure people with dementia can attend – so fundraising needs to happen to enable that – or maybe sponsorship can be found – otherwise its an empty invite.

I met old friends and new. Keith Oliver and his wife Rosemary were there. I was pleased to finally meet Tessa Gutteridge who led the session. She is the wonderful person who is the Director of Young Dementia UK along with the equally wonderful Kate Fallows from the same charity. Their enthusiasm should be bottled.

Keith, Rosemary and Tessa

Those present were round the table were Keith, Rosemary, Tessa, Nada, Aisha, Janet, Peter, Reinhard Guss, Hilda Hayo (CEO of Dementia UK), Karim, Professor Jan Oyebode , Mark from Journal of dementia Care, Gill Walton (UCL) , Kate Fallows, Adrian Bradley (Alzheimer Society). Alisha, Janet and Karim were new to me so hopefully I’ll get to know them better as time goes on but all seem very influential and enthusiastic members of the team.

Because I’ve come in a year down the line, I havn’t got my head around the set up yet, but there appears to have been work streams set up and people from each work stream gave an update. Four people gave updates so I imagine there might be 4 work streams. Janet, Jan, Gill and Adrian all gave updates.
Much of the update went over my head on this occasion but a few things struck me:
I think it was Janet that said:

‘Pooling resources and not letting logo get in the way of progress”

This has never seemed like rocket science to me and individuals are always keen to work together but organisations are always reluctant to fly under a neutral banner. It all falls down to money – everyone is chasing the same funding. If groups of collaborating people from many disciplines called the shots when tenders were being submitted, it would do away with all this fighting over funding as groups would be pooling their resources to gain the best possible services. At present, sadly, the Alzheimers society is guilty of this but it would be seen in a better light if it collaborated instead of trying to go its own way with services.
What also became apparent from Janet, Gill and Jan is that we need people from each individual specialty to help us with language. For example, we need a Gp to tell us how to talk to Gps. Our influencing will have to be based on coming up with solutions that focus around finance. For example, the CCGs (Clinical Commissioning Groups) will ask ‘What’s in it for us?” and we have to have facts and figures on why our plans will save money. That way we’re more likely to get people to listen and act.
Those that educated health care professionals are also our target. We need to ask if dementia is covered and more over is Young Onset dementia covered. Gps are our biggest challenge yet the ones who could influence most in my opinion. We have to find a way of getting GPs interested.

Adrian gave a really good summary of his first 6 months with the Alzheimers Society. Both Keith and I said how the society is realising the benefit that people with Young Onset can give the society. We’re still able to articulate and promote so not to give us a voice and involve us more would be detrimental. We know, more than anyone, what services should look like for our future. Whilst it shouldn’t be forgotten that people in the late stages are still able to communicate, if not verbally, then in other ways, we can state categorically what we want services to look like for our future.
The society really needs to focus more attention on Young onset and age appropriate services. The appointment of Adrian into post shows their commitment though. As long as his post doesn’t disappear, we’ll be assured that it wasn’t a tokenistic appointment, which I don’t think it is.

Tessa that told us about a communications company that have selected dementia as an area of interest. . They’re interested Young Dementia UK – they’d like to set up a hackathon (had to look up the meaning of that one!) They want to organise an intensive 2 day session where all their ideas people meet with people we select asking for example, ‘what are the challenges communicating with GPs/neurology clinics’. It sounds a great idea but Tessa will find out more and will also find out ‘what’s in it for them’!

How can you use policy to influence? – one key is trying to increase profile of YOD to healthcare professionals – it might lead to how services can be redesigned. Influence key policy documents – NICE guidelines and MSNAP- will then influence policy makers.

Professor Jan gave an update on the research work stream. They’re aim is not to conduct research but rather to:
‘Having an overview for priority areas for research or encourage research interest in those areas.”

What became apparent from these updates is the very high mountain to climb, but we appear to have set up base camp, got a great team together and have started the climb……getting to the top may take a little longer, but small chunks and small changes are beginning to happen………’actions, not words’ is all I ask……

 

Dementia Without Walls’ Final get together – DAY 1

Tuesday 6th Oct

Some time ago the lovely Nada Savitch asked if me and my daughter Sarah would like to attend a 2 day meeting down in London. The aim of the get together was to celebrate the project which was now coming to an end and to discuss the future and legacy of ‘Dementia Without Walls’.

I felt bad not travelling with all the others down from York – Emily, Charlie, Elaine, Eddie were also coming down – but I prefer to go into my own world on the train and I may not have been very good company. Sarah just goes with the flow so knew it would be ok travelling with her.
When we got to Kings Cross, me and Sarah got a cuppa and sat watching the world go by, which is my usual thing when I get to a station before the next stage of the journey.

I also had to try and ring my removal men as everything is beginning to happen with my move….😱it’s got to the ‘stressful period’ where the sale of mine is hunky dory but the purchase is throwing up all sorts of issues. I may end up living with my daughter Gemma while everything gets sorted……..The removal men had tried to ring me on route to London and Murphys Law came into play, as each time we made contact the train decided to go through a tunnel so we were cut off……..

Anyway back to the day in question. We were heading for a ‘hidden gem’ called ‘ The Royal Foundation of St Katharine’ on the Isle of dogs in London. Nada had provided brilliant direction of how to get there from Limehouse tube station (no, I hadn’t heard of that one before either!), however, I decided to take the wrong turning out of the station and Sarah ended up turning me round to retrace our footsteps…..and actually do as Nada had written…..………..

It’s web site described it as:
“Founded by Queen Matilda in 1147, the Royal Foundation of St Katharine has served as a centre for worship, hospitality and service over many centuries.”
It was a very peaceful setting even though we could see the Docklands Light railway from our window.
There were no TVs but wifi throughout so I was a happy bunny. Me and Sarah had our own flat which was perfect.
The grounds were also very peaceful with only the hum of traffic filtering through.

We dropped our things off in our room and then made our way downstairs. I could hear the friends before I saw them! Emily, Eddie and his wife, Elaine and her hubby, Charlie and Philly. We all went into the dining room for lunch and met people already in their. The lovely Chris Roberts and wife Jane were already there.
After we’d eaten me and Sarah went outside into the lovely grounds and took some photos.

Beautiful autumn colours…

Because of all the house stuff my brain then just wanted peace and quiet so we left everyone and went and chilled in our rooms until the remaining guests were due to arrive.
We went back downstairs and then we were met by a ‘who’s who’ in the world of dementia with Keith Oliver and his wife Rosemary and many many other people who looked familiar.

Agnes Houston and her daughter Donna were the last to arrive and proceedings were halted while Agnes went round hugging and saying hello to everyone.

Nada then started off the event with general housekeeping and much hilarity.

The wonderful Philly and Nada

We went round the room introducing, not ourselves, but people next to us. We went round and caused havoc. Good chaotic start to the proceedings. Virtual friends were in the room – many of us know one another from facebook, twitter and email.

Philly Hare then welcomed everyone – people have come from Wales, Scotland, Ireland, England and Belgium!
Aim of the project had been to challenge attitudes, inspire local communities and support the collective engagement of people with dementia

Some of the Outputs and achievements were the development of the DEEP network; greater visibility of people with dementia; new debates on rights, social model, Women,and Language.

Katherine Blaker was up next (me and Katherine did a double act a few months back when we spoke to a Women’s Institute group in York) – she introduced various people who’d been asked to give a 3min talk on something they’ve done that is part of the programme.

Chris Roberts – talked about Dementia Words Matter – PIC of DEEP words Curl up and die words

Natalie Gordon from the Joseph Rowntree Trust spoke – I’m doing a double act with her at Telford Dementia Congress in November and today was the first time we’d met – I think!

Natalie Gordon

Many more spoke – best was from Elaine from my own group in York – she said:

“being involved with Dementia without walls has given me my life back.”

She’d never before spoken to an audience – ‘she was frightened’ but she was brilliant –‘ we feel valued and listened to’ – she laughed when she went wrong and was not phased –

“Agnes and Wendy have encouraged me to speak out more and that’s why I’m here today.”

Well done Elaine!! Hubby Eric and Charlie from York

Dubheasa Gallagher from Ireland used her 3 minutes to speak about dementia in Ireland – their dementia friends session in Ireland is 2 hours – yeh!!

Katherine then asked if anyone else wanted to say anything and I thanked those Professionals who we work with and who work with us and have helped us to speak out. They have shouted as loud as we have to give us a right to speak out.
Agnes added that:

“Many have gone before us and not had our voice – we’re showing those who come after us that it’s ok to speak.”

The Joseph Rowntree Trust will be releasing many reports around Nov 3rd to coincide with Dementia Congress in Telford and I’m lucky enough to be speaking on 2 days thanks to Philly Hare asking me.

By this time my brain had decided to settled down for the night so nothing else was typed in my notes. We had a lovely supper but the noise got too much and I went up to my room to hibernate for the rest of the night. Day 2 tomorrow!

 

Why I now need to move house……

Many people have asked me if it’s wise for me to have taken the decision to move house so today I thought I’d tell you why…….

I’m only 59 and I live alone, so having retired early leaves me without an income as I don’t get my state pension for eons……I used all my lump sum of pension to pay off my mortgage so am left with a minimal nhs pension. This means that all my money is tied up in my house. My house isn’t entirely dementia friendly and needs a bit spending on it for the future, so I need to release capital…….are you still with me….?

I also live on a main road into the city and the noise has just got too much. My earplugs help when I’m out and about but I don’t find ambling into the city a joy anymore – I need a more peaceful existence.

Not that peaceful Billy………

Anyway, I felt there was this small window of opportunity during which I could cope with selling a house and moving. So my thoughts then went along the lines that if I could sell within 3 months, I would move. Everything then happened very quickly and within the month I find myself having sold and waiting to move😱 ‘Waiting’ seems to be the key word here as nothing ever seems to go speedy in the world of buying and selling houses and mine, even though it’s straight forward, appears to be going at a snails pace……..

I’m in the process of buying a house in a very friendly village that I can alter to suit me. I suppose I’m making living better now and planning for the future all in one go.I fell in love with the village when my daughter Gemma and Stuart moved there but I had to make sure I felt comfortable living there in case they decide to move in the future – and I do.

I’m very excited. I’ll have Gemma, my daughter, and her partner Stuart, not to mention Billy, right on my doorstep. I’ll be moving away from one daughter and moving closer to the other! But we’re all within a car drive away and I’ll still be near a main line station!

“I’m sure I can see Wendy’s new house from here!”

No one tells you to consider all these things when you’re diagnosed, especially if you live alone and especially if diagnosed with young dementia but you may have such a small window of opportunity…………..so much more needs to be done to inform people before it’s too late……

So everyone crosss your fingers please that it all goes through soon as nothing is ever certain until it actually happens for real…..

I’ll be sad to leave York  as I thought I was living in my forever home but it’s only a bus ride away and I have big plans for the village…………….they’re not aware of that fact yet………😎