The guilt that comes with a diagnosis of dementia reared it’s ugly head again last week. I sat with 2 male playmates, both married, one living with dementia, one the carer for his wife.
They were talking about their situation if the carer had to go into hospital. The person living with dementia felt huge guilt as his wife was due to go in for an operation but was worried about how her husband would cope, who would care for him? She was considering cancelling the operation as they could find no support services to help. The playmate believed he could cope but knew he may forget to do things and was trying to reassure his wife but the over arching emotion was one of immense guilt at having to put his wife through that thought process when she had enough on her plate with an operation…..
The other, the carer, had never thought of the situation where he would have to go into hospital…..who would take care of his wife? She needed support and wouldn’t cope on her own for a long period. Once again, the tears welled up, the immense fear, the stress of a simple thought.
It’s often been said that carers ‘suffer’ and people with dementia try and ‘live’. There comes a time when we (people with dementia) become oblivious to the situation around us. It’s then that the hardest times must inevitably be for those caring. At least, before we ‘go over the edge’ into someone reliant on others, we can talk to our loved ones, comfort where we can. But when we’re no longer capable of seeing the situation in all it’s glory, the emotional stress is in the sole ownership of those who care.
So what about people like me who live alone? Well I still have guilt, the guilt of impinging on my daughters lives unnecessarily. Of having to rely on them to do some things for me when I know how busy they are. I try not to ask as I want them to live their lives.I’ve always told them, I don’t want them to be my ‘carer’, I want them to remain my daughter at all times…..should I still be around when I ‘need care’, then I’ll allow others to do that… reluctantly.
But I don’t have the guilt, of being with someone I married, someone I hoped to share my life with into old age, of them seeing me deteriorate, of becoming reliant on their existence….I see that as an advantage of living alone. I can repeat things to myself all day long and not annoy me. I can sit in silence if I want to without feeling guilty about not engaging in conversation. I can get things wrong in my own home and have no one worry about what I’ve done………I don’t have that guilt…
One story sticks in my mind. Of being sat with a couple somewhere. The husband had dementia. The wife was saying how she would never see her grandchildren again as they now lived in America. It was ‘his fault’. The guilt on the mans face as he lowered his head in shame, was tragic and still stays with me.
Sadly we have no control over dementia. We can do everything we can to slow the deterioration, as I hope I’m doing by doing all I do, but the guilt that dementia brings is the cruelest guilt as there’s nothing we can do about it.
It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!
My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..
Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)
Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..
Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….
Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.
I asked for a piccie while we were all relatively fresh
Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..
We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……
We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……
We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…
We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….
We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June. Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.
Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂
We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣
We went through the list of ideas of what it means to be ‘inthe driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..
Much conversation took place around emotional decisions and factual decisions
We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!
Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….
We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.
Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……
Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……
We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…
We made out way back for our last hour before the end of the day…..
For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..
The last idea was around an article for a journal…..Disability and Society journal….
Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….
I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”
Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:
“The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”
As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..” And off we went our different ways home………the days a blur already…..
A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..
It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..
The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.
Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.
The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..
The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …
Soon the daytime appeared making it a much friendlier world….
I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄
Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…
We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..
Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..
Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂
There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.
Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.
Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.
The Pioneers then spoke about the issues ……mine was:
“Ifwe can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”
We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.
The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.
If we create our own ethics process, will it be considered as something to take seriously?
“The more noise we can make about being disempowered, the better”…….said academic Lucy.
There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..
We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….
Philly went through all the post its trying to gain a consensus….no easy task!
More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….
After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..
We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place. But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.
someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..
There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said
“We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….
So after Mondays venture to London, yesterday it was the turn of somewhere more local, York. Anna Harrison, Dementia Action Coordinator in York and able enabler at Minds and Voices, had asked if any of us would be willing to attend a meeting of the York Dementia Acton Alliance Steering group. Well normally I’ll leave this to local playmates, but numbers of those available seemed low, so I agreed to tag along. No one with dementia was on the Steering group so we had to put that right and Anna made this possible…
After yesterdays travel escapades, I wasn’t sure whether bus or train was going the be the right mode of transport. The bus over the Wolds in windy weather is a bit of a wild ride, yet the trains to York the day before had been cancelled 🙄…….so I looked at all the timings and decided to gon on the first village bus which would get me into town to see if buses were running and if not, I still had time to trundle to the railway station to see if the trains were riunning…..🤦♀️…things we have to do when we rely on public transport…….I knew I’d have to rely on a train back as the buses are awkward after 2pm to get back to the village…….🙈
Anyway, the village bus pulled into the bus station at the same time as the York bus was arriving, so that made my mind up…..although the bus driver asking if everyone had brought their sea sickness pills wasn’t reassuring…but very funny…😂🤣
We hadn’t been out of town long when the bus was being buffetted around in the wind…maybe it hadn’t been one of my best ideas to sit upstairs but that’s where the best views are!….but at least it was a sunny day as we passed the racecourse…..
I began to see what the driver meant about sea sickness pills…….as sitting still in your seat wasn’t an option…..we passed the usual sights of the llamas in the field, munching away at the grass with their winter coats keeping them snug, the windmills having no problem generating power today as they spun round like the clappers, the flooded farm land after all the storms of late and tractors going about their business no matter what the weather…..
90 minutes later we arrived in York, shaken built not stirred ready and noticed the rain that had started was now falling as snow 😳 with the 2 foreign tourists going wild with excitement ….hopefully just a passing shower….because I had time to spare, I stayed on the bus until the station and then trundled to the warmth of the library, the affect on river levels of the recent storms very much in evidence…..
The meeting was all about the current situation in York around services for people with dementia and the way forward so really important. Often at these meetings you find many don’t turn up, but Anna had had so much interest that we’d been moved from a small room into the main hall, which sounded really promising…..Anna had txt me in the morning to see if I needed any support but I knew this venue well in Priory Street – very dementia appropriate venue…
After warming up in the library, I trundled my way through town passing the river on the other side, with the famous riverside pub once more deluged by the Ouse ….and the whirlpool I mention in my book clearly in view….
I arrived at Priory Street to find playmates had made it!!! After hugs, a cuppa and lunch…..we started chatting while we were waiting for the last 2 to arrive. The issue cropped up of those in couples – “What happens to the person with dementia when the partner goes into hospital…?” Something that’s often not thought of until the problem arises…………the emotion both men showed when talking about this was intense. Eddy showing the guilt he felt as someone living with dementia, and Eric from the point of view of the care partner. The emotion welling up in both these men as they spoke about the pressures of living as a couple when affected by dementia.
Anna and a few other were there. Also there was a blast from the past, Emily Abbott, who used to be our ‘able enabler’ at Minds and Voices when I first joined…….she now works at Health watch……but lovely to see her and have a hug…..Damian was also there, so just like old times …❤️…..I always remember feeling very sad when Emily left us….
Once 2pm arrived, Steven Burkeman, chair for the day, started off. We all introduced ourselves. There were people from York Hospital, Joseph Rowntree, the Council, ‘Well Being’ service, a Commisoner for Services, Dementia Forward, Solicitors, and of course, Dementia Action Alliance.
I was able to ask if people minded if I blogged and if I took photos. The formalities of the minutes from the last meeting were gone through first……
Cognitive Screening Resources was up next – the tests the medical staff have when looking at the possibility of dementia…….Sonia from the hospital asked some people present to name as many animals as possible, (something we’re often asked to do)showing the stress this can cause when timed…….I always find that hard. The average is 25, but 11 is also acceptable. Sadly mine is always less. What is normal one day might not be somebody’s normal on another day……So imagine doing the test in hospital, a stressful environment already and you can see the problem.
She then showed the new sensible way to measure confusion – showing whether the confusion is different from their normal state. So they’re actually looking for delirium……
Some are now realising that the usual tests of knowing the date, remembering an address and the normal memory stuff is not a good way to recognise dementia….we spoke of the futile tests we have to do…..the question ‘Who is the prime minister?’ …if you’ve never been into politics, why would you suddenly start taking an interest and know……….?
Anna brought us up to date on the latest stuff from DAA. The local fire brigade are keen to promote their home assessment for people with dementia. York now has link workers who socially prescribe ….and for dementia, social prescribing is key and maybe they could promote Minds and Voices….🤔
The commissioner from the NHS was up next talking about the Strategy for Dementia in the Vale of York. York is the 7th lowest in the country for diagnosis rates…..😔….
The expected number of people with dementia in the Vale of York is around 4.5 thousand yet there’s only around 2500 people diagnosed according to the numbers. There’s a lack of understanding around the value of being diagnosed. Gp’s themselves don’t understand the benefits of diagnosing….the criticism by GPs against York is for not having a clear pathway when they diagnose so they’re now working on a Strategy but not a new strategy as the money isn’t there. So instead they’ll look at what they already have and utilise the good bits to find out what’s needed and what’s missing. We went round the table to give 1 sentence from each person on what should be a priority….
My one sentence became a few items…..Not a timely diagnosis but an accurate one, not just setting targets for diagnosis……. not being abandoned at diagnosis…..when we get the diagnosis our family get the diagnosis too. Making it known what is out there – we don’t know what we don’t know. There can be a million good services out there but if people diagnosed don’t know where to start or where to look, then those services are wasted.
Many good sentences came out of that one bit of the meeting to inform Sheila from the NHS Commisioning body…….
Sheila then said that she was organising a gathering of 250 GPs focusing on dementia….and we all immediately came to life and said, ‘Let us at ‘em…”😂🤣
Anna and Lissa from the DAA then spoke about a mapping exercise day, where what is available is mapped, and evaluating what’s out there and where the gaps are. I suggested each service providing data on numbers and success data etc ……
Carl was the next on the agenda….firstly talking about an app called House of Memories for people with dementia. Objects or photos from the past can initiate conversation with people with dementia. It’s currently been used in Liverpool and is coming to York in April to be made available in December …..
Carl then went onto Age Friendly York, a worldwide initiative through the World Health Organisation. Then ‘Your Time’ from a leisure persspective and how easy it is to access those activities. What’s the experience of those moving from work to retirement and the issues……..so really ‘Age Friendly York’ should be ‘Friendly York’ as Steven said……
Anna finished off with the Blue Badge Issues in York for people with dementia…..only people with severe dementia are the ones likely to get it……so more action will be taken…..I spoke about the Post Code Lottery that exists once more as some areas interpret the guidelines more realistically than other – York being a poor area.
It was an exhausting meeting as soooo much came out of it and Sheila from the Commisioners actually said it had been the best meeting she’d attended in ages….so now lets see actions come as a result of all the good words spoken for the people of York…..as Anna said on a txt to me this morning…..
“ Itfeels like a turning point in changing hearts and minds..”
Let’s hope so…..the passion to change was certainly in abundance today…..
The weekend had been one of 2 halves…..Saturday, getting everything done before the storm arrived in case of power cuts and Sunday watching the storm develop…..
I’d done so much brain work on Saturday, planning my week, booking future train tickets, that by Sunday all I wanted to do was snuggle….I couldn’t think what to do about Monday….how to work out a plan B, so I did just snuggle, doing nothing in particular …
Before I went to bed Sunday night I did think to set alarms to check the trains were running as I was on the first train of the day and the taxi was due at 05.45…..an alert came through from the trains saying they were all running on time……well they were at 02.30…….🙄…..maybe that’s when it all went wrong, after all, it was me travelling…….
The stood by the window looking out for the taxi lights, being entertained by the owl in the paddock across the road hooting away in the morning dark…scanning my eyes for sight of it’s eyes or flight, but it remained hidden out of view, teasing me with it’s twitterwoos …..
I suddenly realised the taxi was late, pressed my phone to ring the number ( as they recognise my number, no need for explanation) and the voice at the other end confirmed my worse fears of the driver having been held up at the previous address…🙄…he wouldn’t be there in time to get me to the station😳…so would have to take me to Brough furher down the line to pick it up there🤯….not a good start but nothing I could do….
He eventually arrived, not someone I’d seen before. He explained the woman before me, going for the same train as me, wasn’t even up when he’d arrived🤦♀️…..he was due to Have finished half an hour ago, the reason why I’d never seen him was because he was a night time driver…. but had been asked to take me to Brough 🙏…..
Now taxi drivers always take the country roads to Brough and my little brain immediately thought, ‘was this a wise decision after storm Ciara….🤔….but he must know what he’s doing…🤪…..well to say it was like traversing a dirt track was probably an understatement….so much debris to navigate, fallen trees to swerve around and then a huge snow storm decided to add to the complications!….I simply held on tight….🙈……when we finally got to the station, I asked for my receipt, as usual, expecting it to be 3 times as much as usual, and he said…
“The office said this one is one the house, no charge…”….bless……..
I saw the waiting room was crammed with people….now this is a little station in the middle of nowhere but because all the trains stop here, has a sense of it’s own impotance….I saw the reason why so many people, as I squeezed myself inside out of the pouring snow/rain…
This wasn’t a good start to my day but impossible to change my mind stuck in the middle of nowhere with no way of getting home again. I just had to sit it out with everyone else….turns out it wasn’t due to the previous days storm but to a broken down train blocking the line 🙄……thankfully ours arrived eventually whereas others were cancelled…..
So here I am typing this on the train now….
I was heading to London for meetings at Dementia UK, the people that are responsible for the wonderful Admiral Nurses, specialists in dementia. Dementia UK IS Admiral Nurses…..The 2 phrases are often thought of separate but they are very much together……They are the only dementia charity who train specialists nurses, so, to me, more knowledgeable, and much needed in every area. At the moment they are a post code lottery, just like most support for people with dementia….but they have a wonderful helpline staffed by the qualified nurses too…you can find out more here along with their helpline number at the top right hand side…
I was due to be at the first meeting in the morning to discuss the Strategic plan for the next 5 years and another in the afternoon, about how we could help publicise and promote the need for Admiral Nurses, but something told me to go back early …🕵️🧚⚗️…….I would see how things were looking……..
It was dark when we left but as the world started to appear the devastation caused yesterday became very apparent. The storm may have swept through but in it’s wake had left flooded landscapes all around, hard to tell where rivers end and land begins…..
It was still breezy outside. I could tell by the way the train was buffeted in the wind and the draft going through the carriage 😳😱🙈
Anyway we eventually got to London, only a few minutes late! Think we must have had a tail wind blowing us down…….but we got there. I made my way to Aldgate where Toby Williamson, the project manager for the ‘Lived experience Panel’ would meet us…..
It turned out that Toby was just meeting me! as others couldn’t make it for one reason or another, so I didn’t get my hug from playmate George.
The meeting was being held at Whitechapel Art Gallery and as we walked in we had a sneak preview of the exhibition starting that day……beautiful………we went into the room to be met by Hilda Hayo, and Paul Edwards……so I did get hugs….also there was a Twitter pal who I hadn’t met before, Sarah Russell who now works for Dementia UK as a practice facilitator for the charity.
Paul, Director of Clinical Services, welcomed us to the strategic workshop. Obviously I can’t type about the discussion, but it was all about deciding how to stake their claim in the health field about the value of their services…..Me and Toby there were representing LEAP (lived experience panel)…..amongst the meeting were Trustees, Comms people, fundraising, business development, HR, and many others…..
It’s rare to have so many people from different teams together, but it was all about how all teams can work together for the next 5 years, but today we were focusing on Year 1….
Sarah Richardson, responsible for the strategy led the day…..
Charities often have to think of the social and political climate and how it might impact on their plans….no more so than now….
The uniqueness of Admiral Nurses lies in their expertise in caring for people with dementia. I’d like to think that my daughters would have access to an Admiral nurse further down the line. Someone to support them, to advise them, to simply be there. At the moment they don’t exist in my area and it’s a post code lottery from county to county, but one thing is for sure….they are a NEED not a luxury…..
We sat round our tables and had an hour to discuss the different elements for the first year.
The lovely Suzy Webster, from the LEAP group had arrived by then so we focussed mainly on embedding the LEAP group into the organisation and what the Opportunities, Risks, Challenges and Resource issues for doing this were…..
We had a wonderful discussion and wonderful feedback session and the phrase of the day went to Twitterpal Sarah Russell, who called members of LEAP, those with lived experience as having:
“Practical Wisdom”…..a wonderful line to end on…….
I decided not to stay for the afternoon workshop as the trains were all in the wrong place after yesterdays storm and liable to cancellations. I wouldn’t have got home until 9, which would have been ok if everything was normal but I’d taken a peek part way through the morning and noticed the first train of the afternoon had been cancelled so decided to call it a day.
The problem was, I was booked on the 17.33 train, so wasn’t sure if they’d accept me on an earlier one. I got to the station and found a smiley person who might be able to help and she took me to customer services. They then phoned through to someone, who came within minutes and escorted me to the next train, told the guard I could travel and found me a seat……..wonderful…..kindness really does cost nothing………AND it meant I would get home by 6……..❤️…soooo glad I made that decision to leave early as heavy snow started to fall as we ventured north…..😳..
Yesterday we had the terrible news that the BBC is making massive cuts and one of these cuts is the axing of BBC 2 Victoria Derbyshire programme.
It’s campaigns, it’s revelations & commitment to the public having their say made it pretty unique in daytime TV. It was honest, real and truthful and amongst other subjects gave dementia a regular voice.
This programme is very special to me as it introduced me the the wonderful journalist Jim Reed.
Over five years ago, at the time of the release of the film Still Alice, the BBC asked me, Keith Oliver and Christopher & Veronica Devas to film our lives for a month using a camcorder. From the footage we recorded, the wonderful reporter, Jim Reed, produced this short film….how different I was then compared to now…
This was just after my diagnosis and I was still working full time. From making that film, I made 3 wonderful new friends. We’d been brought together through a diagnosis of dementia. Our paths would never have crossed if it hadn’t have been for the diagnosis and I’ve made so many more wonderful new friends since. Every cloud…….
Then 3 years later, back in 2017, we were asked to make an updated version to go alongside this one and here’s the link to that…..what a difference 3 years makes…..
Apologies if my overseas friends can’t view the links, but fingers crossed…..
Now the BBC in their wisdom have decided to axe this wonderful programme. Victoria Derbyshire gave dementia a voice, revealed the sexual abuse going on in football – just 2 of many many important issues, raised and reported on with dignity, truthfulness and openness …..now unless we campaign, it will automatically disappear.
But Jim has asked previous participants on the programme to appeal to the BBC and I’ve written the requested email. But you can help too by signing this simple petition that will only take a minute. We’re trying to get as many signatures as possible simply to make the BBC reconsider and see the support this programme has….
I’m often involved with stuff going on at Hull Uni. Well last week Professor Esme Monica.Cook, asked if I would mind sharing a survey they’re doing around language used to describe certain behaviours. The survey is titled: “Changes in behaviour associated with dementia – what do people with dementia and carers think about the language used?”
I’ve had long held views about the language used by professionals. My pet hate is ‘Challenging behaviiour’…which makes us out to be at fault instead of others simply not understanding our distress. But I won’t go on about my views as each and everyone of you will have your own.
They’ve already asked professionals for their views, but now, quite rightly, The survey wants to hear from people with dementia AND also supporters, so pleeease complete so they have as many views as possible. The survey will be open for around 4 weeks until 14th February, but the sooner you complete the sooner you can forget about it 😂
Here’s the blurb from the University ……
We are interested in gathering the views of people with dementia and carers on the language used to describe changes in behaviour in dementia. We would be grateful if you can help us by completing this short online survey, which should take around 15- 20 minutes to complete.
There can be changes in behaviour associated with dementia that others find difficult to understand, for example aggression, agitation, wandering, verbal outbursts, delusions, hallucinations, apathy and anxiety.
There are several different terms used to describe this, with differing views on how helpful or not these might be in the context of providing and receiving care and support.
This survey seeks to find out which term people with dementia and their supporters most prefer. The most preferred term will then be used as the title for a best-practice tool-kit to assist health and social care services in providing good support to people with dementia and their carer(s).
There are no right or wrong answers – we just want your opinions. Your responses to this survey are anonymous. Please also forward this email on to others who can help i.e. other people with dementia and carers.
If you have any questions or would like further information, please do not hesitate to contact us on: firstname.lastname@example.org
I’ve spoken many times about how technology enables me to remain independent, well Zoom enables me to ‘meet up’ with playmates. This week on 2 such occasions …
Every Monday at 5pm, the Zommettes meet on line to put the world to rights, provide ears to listen and share laughter and sadness. There’s 10 of us, I think, including our ‘able enablers, Anna Harrison and Aimee Day. The wonder of zoom, is we don’t have to live near one another. It connects those in remote places with those in cities and towns.
We talk about absolutely everything, knowing we can trust those on the call and also, realising that within minutes of hanging up, most of us will have forgotten anyway…🙄😂🤣
Aimee and Anna, our ‘able enablers’ keep us in order. Me and Agnes are usually snug in our beds, afterall, it doesn’t matter where we are or what we wear.
I could only stay 10 minutes this week as Stuart was picking me up early for my tea….but I couldn’t miss clicking the link just to say hello to those who had made it…and it’s always comforting to see playmates on screen…..
Yesterday was the second zoom of the week for Dementia Enquirers Pioneers. This is the project where people with dementia are leading from the front on research and inviting academics through our door when we need their help. You can read more about our wonderful project here..
It was hosted by the Thred group from Liverpool (Transport, Health, Research, Economy with Dementia) with the lovely Liverpudlian Paul Hitchmough chairing and supported by his ‘able enabler, Louise Langham.
On the call were me, Philly, Louise, Paul, Mhari and Ron.
Paul, me, Mhari and Ron, all have dementia and Paul kept us all in order …..no mean feat, which he did brilliantly!
Paul and Louise filled us in on their project on Transport, how it impacts on our life with dementia. They’re well ahead of me and my playmates at Minds and Voices as they’ve organised an online questionnaire, which I’ll share when available and they’ve booked themselves trip through the 4 nations to hear from as many people with dementia as possible.
Minds and Voices havnt met for a couple of months but our project is all about Liviing alone versus living as a couple. We have decided on the questions (I think!) and plan to interview other groups.
I spoke of the difficulty in keeping up momentum when we simply forget it exists; when one meeting merges into another and we forget the smallest details and almost have to start all over again. We came up with ideas to help remedy this.
I wasn’t typing as we were on ZOOM, so any more detail has already left me, but I know we left feeling inspired, feeling we wanted to crack on and ‘do’. There’s nothing more wonderful than meeting up in person but it’s so costly so this is an alternative and allowed people to join from the Western Isles, across to the West and East and from the centre of the country……..and a virtual hug is also comforting…..
I work out ZOOM in the past, but I think it was Philly who talked me through it and gave me a practice run and now sends out a simple link for me to click on which immediately takes me to the meeting, making it straight forward.
There are 12 projects happening around the country, all led by people with dementia, all the research topics chosen by people with dementia. We have until May to complete and then hope to write our own publications and get the media involved as this really is a landmark project showing what people with dementia CAN do with the right support and encouragement……..
At the beginning of December I had an email from the Spectator magazine, asking if I would comment on a review one of their journalists had written about the TV screening of the fictional book Elizabeth is Missing, where the wonderful Glenda Jackson played the lead part of Maud, who was living with dementia.
Sadly my response came out in the Christmas issue but was behind a paywall so I can’t provide the link. They did cut my response down to fit the space, as often happens but here it is in its entirety…
I’m writing in response the review of Elizabeth is Missing, ‘Return to Glenda’ by James Walton.
I totally agreed with Waltons comments on the absent years of Glenda Jackson from the theatre but also admire her for fulfilling her passion and belief she could make a change in the political world.
It didn’t surprise me that Jackson chose this role as her comeback after more than 20 years away as Dementia is one of the biggest social challenges this country and indeed the world faces. The social care crisis is one that politicians have avoided for too long and the one that will not magically disappear as the population ages.
However, now may be the time to announce my vested interest in the piece. Sadly I’m now unable to read the book or follow the TV programme as I too have dementia, so can’t comment on Waltons view of the programme itself. I’m just happy whenever dementia get’s an airing on national TV simply to get people talking about dementia.
Dementia is certainly a bummer of a diagnosis and it can strip away your self esteem, your memories, your abilities. But we never forget how people make us feel. We forget the detail in the blink of an eye, but emotions remain strongly embedded as it’s a different part of our brain that’s often left in tact. I’ve already apologised to my daughters if and when I forget who they are, but tell them to remember that I’ll always love them.
You may be wondering how I can possibly type so eloquently; type these very words when I have dementia?
We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. We’re all different in the cells it affects.
I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. I could never in a millions years simply speak these words. Typing is my escape from dementia and I watch my fingers in awe sometimes.
However I never dwell on what I can’t do. I never dwell on my losses, we have no control over either. Personality has such a big part to play in how we cope with a diagnosis and I’m lucky as I’ve always been a glass half full person and turn negative experiences into positives because that’s what helps me cope. When the fog descends and dementia takes hold I tell myself ‘it’s not me, it’s this cruel disease’ and I’ll just sit quietly and wait for the world to make sense once more.
Clinicians focus on ‘There’s nothing we can do for you” instead of focusing on what we still CAN so. That makes it even more important for those around us to believe in what we can do and support us to continue living. I have two amazing daughters, Sarah and Gemma, who enable me rather than protect me. The biggest thing dementia has taught is is the power of talking so when dementia throws a challenge, we talk and try and find a solution. My mantra is ‘There’s always a way’, we just need the kindness and support of others to help find that way out of the situation.
Dementia may be terminal, but then so is life, so I enjoy each and every moment, the simple things in life are now more precious, time has taken on a whole new meaning and if today is a bad day…well tomorrow may be better.
So Friday was Friday 13th …….. would it be an unlucky day for our project looking for ethics approval?
I’ve never seen what goes on at an ethics board meeting before. So many researchers fear them and they often seem to over protect or underestimate people with dementia, so I was expecting an interesting experience…….research studies have to receive ethics approval to make sure those taking part are safe.
It had started off a sunny day but the grey skies soon descended and fitted my mood for the day….no matter what you thought of the result of the election, we mustn’t let it divide the country. People made their mind up for whatever reason they thought best & now we have to stop all the divisions and hatred that exists. Sadly I can’t feel anger anymore or I’d be ranting and raging, all I can do is let my eyes leak ‘til they’re empty……and so I was glad I had something to fill the space on Friday, but knew that if the panel upset me, I’d just cry and that might or might not work in my favour! 🙄
The taxi driver was a smiley soul but we trundled to the station in silence, conversation all spent for the day. The first train to Hull was on time and I got my cuppa tea before the train to Leeds, which was delayed of course…..
The sky was undecided as we trundle past the Humber…
The train was crowed with festive fun as people with suitcases struggled to find a spot for them to rest and groups raucously brought out clinks of booze and food for the journey …..and exchanged terrible jokes 🙈 as this was a lunch time trundle so very different passengers travelling alongside ….the volume of noise too much for me to decipher punchlines or conversations so I looked out of the window and went into my own world instead…..the peaking sun hiding the torrential rain falling in the distance
We were meeting the committee in the Queens Hotel, next to the station in Leeds and Mark Wilberforce and Louise Newbould, from York Uni we’re meeting me there for lunch ahead of the time so we could talk tactics 🙄. Their project is called HOPES – Helping older people to engage with social care….it’s looking at people with dementia but also people with mental health needs….it’s a really big issue that we don’t address at the mo.
NHS committees are used to to medical trials and medical trials can cause a lot of harm so they tend to be cautious but they are getting used to more qualitative social research than previously. They used to medical researchers ‘Doing’ things to people, so now they’re having to understand risk in a different way. Ethics committees are all about interpreting harm very widely so e.g in our sort of project over probing questions, or overlong interviews……
Ethics committees are volunteers so only get expenses which surprised me hugely….the fact that there’s 3 of us turned up shows we’re keen on ethics…..I promised Mark, I would be polite and wouldn’t mention the fact that I just wanted to see what they were up to 🤣😂
It was mine and Louises first ethics committee….Louise very nervous, me very excited 🤣
In the first part of our study we want to talk to people with dementia and those with a mental illness who were having trouble with care visits into the home and accepting they need help and the reasons why they might refuse help. So having trouble receiving it and accepting it…. Sometimes Home Care staff will dismiss people who reject home help due to the circumstances at the time – it’s easier to move onto the next person, such is the restraints on their time. They may be rushed, the care staff may not know how to interact or how to cope with the situation…..how can we train staff better to understand how to perform Home Care?.
The biggest thing I learnt was we can’t control the venue where ethics decide to hold the meetings. The Queens hotel was a real challenge for me with crazy flooring once more, mirrored lifts and little signage so our able enablers really need to help us with those difficulties. I should have taken piccies to show but I was concentrating on getting from A to B 😳. There was also noise coming from every direction, with Christmas parties and people walking past so hard not to get distracted…
After lunch we headed up to sit outside the Headmasters office (that’s really what it felt like 😂)and just wait to be called……Mark and Louise were nervous, but then all researchers are nervous of ethics, especially NHS ethics…..Mark whipped a tie out to look the part……the research is their baby and timelines are tight, so ethics delays can make or break their project.
We chatted to the 2 chappies also waiting but thankfully their appointment was for 3pm and ours 2.30. They were researching medication in children’s hospitals and the processes…….and were from Manchester ……so had a longer journey than us………it was nice chatting to different researchers in a different field and it turned out Louise knew one of them as her and Mark had both worked at Manchester …..small world syndrome……
The committe were running very late but a very smiley friendly room greeted us.
I asked at the beginning if they would mind if I typed……and explained why, with the help of Mark.
We introduced ourselves. There were loads of them, probably 10 or 12, which surprised me and the room felt very cramped and full – good job they had smiley faces. One of them was the Chair and another one was in charge of asking us questions.
They started by saying how they loved our application, how they were please I’d attended and that Mark and Louise had involved me, Maria Helena, who also has later dementia and her husband David.
They asked me the first question 😱about the length of the questionnaire, which took me by surprise as I wasn’t expecting any questions to be directed at me, but that was a nice surprise.……our questionaire is due to take an hour. They asked if this was too long for people with dementia. I said how flexibility will be key, how each individual is different; how the individuals capacity and the type of day we’re having would influence the process. I turned to Mark, hoping that was the right answer, as I think them asking me took us all by surprise!!
They involved me in the questioning so much which surprised me hugely. But it meant I had to stop typing to concentrate in case they snuck another one in 🙄😳…..we were finished in record time apparently as they only had 3 or 4 questions and it meant that Mark, at the end, told me to mention Dementia Enquirers 😇….and how people with dementia could well be in the hot seat up and down the country and I would feed back about their smiley faces…….
We were all very happy and very pleased when we came out. It was a happy end to the week but then, needless to say, it went downhill as I entered Leeds station…..my train was delayed and then in the blink of an eye, it was cancelled 🙈……we were told to go to Selby and wait for a connection there. The train we were sent to had just 2 carriages and was one of the oldest trains on the planet and was rammed like sardines when I got there. I squeezed on and a smiley face allowed me to have his seat. More sardines arrived and just squashed onto the train even more.
Once we got to Selby, there were more delays, another sardine train arrived and we joined the squash on that one. Another smiley face gave up their seat for me, so very grateful for those people. A Twitter pal posted this on Twitter to me…very apt with the travel trauma I’ve had lately…
I finally arrived home, very tired after a roller coaster of emotions day………tomorrow’s another day and me thinks a chilled weekend is in order………but a great introduction to the world of ethics committees …..