Category Archives: Human Rights

The next PIP trauma wait arrives…..

Yesterday was the date of the rearranged PIP (Personal Independence Payment) visit…..last month they were due to appear  but failed to turn up… can read about it here if you missed that one…

Yesterday the letter said they were due to arrive between 09.00 – 11.00 and I sat waiting for Gemma to arrive. The nerves had been rising inside for days….that feeling of worry, that whittling and gnawing away in my head…….knowing what was to come…..or not knowing….

The early morning was a roller coaster fuelled hour as I opened my inbox to find a wonderful email from a company that I’m hoping will help me with my next fund raising adventure. My support group at York Minds and Voices, is running out of funds, so this year I’ve decided to raise money for them. I looked through the piccies of my sky dive last year and was transported back to that wonderful day….floating in the sky…..and for a moment it lifted my spirits…

They agreed to my taking part in the adventure….just need to find the right method to raise money now so WATCH THIS SPACE!!

After reading that, I closed my iPad and the worry returned, Gemma arrived, and we sat waiting for the Assessor to arrive…….

They were due between 9-11 and amazingly arrived at 9am 😳……my stomach churned as Gemma let her in……

We sat there for 90 minutes, talking about all the things I can’t do, about my vulnerability, my failures…obviously I wasn’t typing so this is simply what sprang to mind as she left…..

She was very thorough…appeared very kind. I was very vague, as usual, as I find it hard to remember the bad stuff, trying continually to block that from my mind every day. But luckily Gemma didn’t, and filled in all the gaps, prompting me where necessary….guiding me through this maize of conversation that left us both exhausted but glad it was over…..she did give us one helpful suggestion – for one of my daughters to become ‘An Appointee’. I’d never heard of that term before, but apparently it will make some things easier. We’ll have a conversation and do some digging around. How are we suppose to know these things if no one tells us in the first place…? But at least she did..

As the woman was leaving, she apparently said to Gemma:

People like your mum shouldn’t have to go through this, but sadly it’s the system…”

Well at least she had a heart and saw that…..but it’s not her that makes the decision and someone else could look at her report and see things entirely differently. We will just have to wait and see….

As she disappeared and left me and Gemma on our own, we hugged and I cried…..simply the relief of it being over leaking out through my eyes………a system which tries to catch out the few and fails to support those with a genuine need…..

Celebrating International Women’s Day……

An extra intrusion into your weekend today…….as it’s International Women’s Day….

Hear what I recorded for a Dementia Diaries special by clicking on the link ……..about the special women I’ve met since being diagnosed with dementia……

Or you can read here…

Sorry if I offend my male playmates, but Sunday is International Women’s day, so this diary is celebrating all my wonderful female playmates in the Deep Network…..

My friendship with Deep started at the beginning with the WOW festival in York. Women gathering to debate, discuss and celebrate. It was my first meeting with others living with dementia and my first sight of Agnes Houston, my now life long friend …….she showed me the way, showed me what was possible. How women despite dementia, can have a voice…

Then there was the Speaking from the Heart Event in London – once again all women with dementia coming together and talking openly about female issues, with our lovely guest Jane Garvey from radio 4 women’s hour…..Jane said in an article afterwards that she’d been reluctant to attend as she didn’t know what to expect but on arrival had heard raucous laughter, a signal of what was to come.

Women are often in the minority in many circumstances, in the workplace, in politics in management in general…..but dementia has put us in the majority. More women affected by dementia than men. Perhaps this is natures cruel way of readdressing the balance. But many female playmates have found, through the DEEP Network, that strength comes in many guises. Where once we may have been weak and undermined, now we have the courage to speak out, to stand firm, knowing our strength lies in our numbers.

So thank you DEEP for giving us our voice, allowing us to find the voice that dementia and life had removed from many. Thank you to our strong female enablers who help us find that voice, because without you, we might still be silent…

The Trauma of the PIP process once more……..

I’m sat here waiting…..waiting for 11am to arrive….sat with dread in the pit of my stomach yet trying to muster a fight…..

It goes against all I stand for to concentrate on the negative, but when the assessor arrives, that’s what I have to do….

The first time I applied for Personal Indepence Payment, some 5 years ago, I had someone who understood. I was naïve, it was a totally alien experience. But the person listened. I showed her the maps and photos it had taken me to get to the meeting. She took note of the enormous effort I’d gone to and I was assessed as in need of PIP to remain independent.

But the reassessment 18 months later, was a different experience. It was demoralising, Because of the positive first experience, I went alone once more, but the reaction was so different. I had the payment taken away from me. I appealed and the process that followed was even more shocking. The Appeal deemed “I was getting better’….if only. They said I could do things I clearly couldn’t and quoted my ability to speak in public for the Alzheimer’s Society was one reason it should be taken away.

My MP was asked to support me but he wrote back stating the benefit wasn’t meant for people like me…..😔 Like so many, he looked at the outward facing me and failed to see the inward me, as a person with dementia…

I was so distressed, so demoralised, so depressed at the time back then. The stress it had caused me and my daughters led me to make the decision that I wouldn’t go to Tribunal – probably just what they wanted. But they got their wish, I just couldn’t do it any more.

In my mind the system was broken. As I said in my blog back then:

Feels like I’m being penalised for trying to remain independent and out of the system – maybe I’ll give up everything and become a burden to the state, then I’ll meet their criteria……”

 Well, this time, it’s the principle that’s the reason for me going through this trauma again. The local council have said I should have been entitled to be exempt from Council tax for years, but sadly I need to be in receipt of a benefit to qualify, PIP being one benefit….it seems crazy that I have to apply for one benefit to be entitled to exemption when my GP would happily write a letter.

Anyway back to this time……My daughter had to complete the form as I can no longer write legibly consistently. The whole process of having to think negatively just isn’t normal for me. It’s times like this when I wish I could switch to being a glass half empty person. Just the thinking negatively makes me feel sad. Having to concentrate throughout each question, on what I can’t do…..

 I realise they have to know the extent of the effect of the dementia, but couldn’t they phrase it in a different way? Couldn’t they find out the extent to which you put strategies in place to cope – this would show them the lengths you have to go to simply to survive each day……😔

Gemma sent me each question by email, so it wouldn’t be too overwhelming; I responded and she added bits she thought I’d missed. It felt like it took us weeks. We had to ask for an extension as they give you a deadline.

The first appointment they sent us was the day I was going on my mini adventure so Gemma had to ring and cancel. She said they were unhelpful and unpleasant, after all we’re not suppose to have a life – not that she mentioned where I was heading as they would have looked at it at face value and immediately struck me off! If we’d have cancelled this second time that would have been it – 2 cancellations and out….but luckily we were both free.

So yesterday, Gemma arrived just before 11. I’d already started tidying and then thought, “What am I doing!”. I’ve never been a messy person ever, so they will always see a tidy house no matter how long it is since I noticed it needs tidying. But I hate strangers coming into my house anyway now, I feel vulnerable and suspicious. Today even more so.

We reminded each other to think the opposite to what we normally do…..where Gemma could speak openly for me as that’s what they want….🙈….how I should concentrate on what I can’t do 🤯..

“It’s an invasion of your well being” as Gemma quite rightly said……

Remembering that they were due to appear between 11 and 1….we sat and chatted…..and chatted and sat……1pm arrived and no sign. So Gemma rang, explained that no one had bothered to show up………….she was told the healthcare persons manager would ring her back… clue as to when…….

The warning on their letter clearly shows that if I’d have failed to be there then my claim would have ended……

Seems like one rule for them and one rule for us, sat there getting more anxious by the minute, waiting for them.

To be fair, the manager rang back within 30 minutes and said how the health professional was not available but hadn’t informed anyone… can a ‘caring professional’ do that? AND how can a system not have something in place to check in on these people first thing regarding their workload, especially when it’s a common occurrence as many playmates have spoken of them not turning up….and especially when they’re visiting vulnerable people 🤦‍♀️

If Gemma had been rung in the morning and explained why the appointment had been cancelled, it would have been acceptable …annoying but acceptable. But to have the tension and anxiety building during the 2 hour slot they’d given us, waiting when ‘waiting’ is something I find hard at the best of times….well simply inhumane..

The individual on the phone could not apologise enough and it’s the first time anyone has been decent on the phone, as all the others have been quite rude……

But what about the person before me who they’d been due to visit, are they still sat there waiting with no one to ring for them? and the person after me….what if those people are desperate for the money and have no advocate.

I was lucky, I had Gemma with me to hug when the stress turned to tears – not everyone is as lucky as me.

It just reflects the whole system as totally broken, a sham, not caring……it should be a caring process, about finding out who needs support, not this confrontational system we have right now….it’s inhumane to dump all this on people who are already going through the crap of dementia or any other condition….

The appointment they gave Gemma over the phone is in a months time….a month of more waiting and then another day of stress and anxiety….how can this be seen as a ‘caring’ system……

So sad……


The Power of Working Together….

A long blog, mainly for me as I found it all so fascinating and wanted to remember as much as possible…….

 After the eventful, but also beautiful arrival in Edinburgh on Sunday

…Monday morning arrived.

Linn Sandberg, a Swedish researcher, along with Richard Ward from Sterling Uni had been planning everything and the workshop is funded by a grant from a Swedish funding agency. They’d arranged for anyone who wanted to, to meet in the foyer of the hotel, to walk to the venue together – always a good move….

So after breakfast I headed downstairs to find others waiting for the trundle up the hill with Linn… was a beautiful morning and who should jump out of the taxi once we arrived but Agnes….perfect timing and I was able to give Agnes the lanyard I’d picked up for her

After a cuppa and catch up we made our way up to the room and Richard Ward started us off……

The audience was made up of phd students, lecturers, research associates, sociologists, social worker, literature student  and researchers from Sweden, Amsterdam and Russia…..WOW!

All hear to be involved and learn about post colonial representation of age and ageing approach to dementia……

Richard started off, saying he and Linn were given a small pot of money to kick start the network. They held a workshop and have since tried to establish an on line presence – the link being at the bottom of this blog…..

From a dementia point of view dementia, there’s an emergence  of a new generation of activists amongst people with dementia, supporting each other but also questioning the the political status quo. So we’re here to talk about how researchers and people with dementia can come together and support activism.  Richard meantioned how the people present often felt as though they didn’t quite belong at many Alzheimers conferences because of their emphasis and viewpoint and hoped this network would provide them with a ‘home’.

It won’t be a meaningful network unless people with dementia feel it’s relevant. It provides excitement for research and funding.

He also said how activism and networks of people with dementia are also responsible to ensure they’re multicultural, they they don’t discriminate – a very good point! We can’t say we’re discriminated against if we discriminate ourselves….

Life Changes Trust, here in Scotland, are instigating a school of Activism for people with dementia and a forum for policy and practice for people with dementia.

Linn spoke next and gave a brief background re the last workshop….

The drive has been to engage with critical movements, feminist , activists, and bringing out conversations in many arenas who have similar parallels…neuro diversity….many different neurological problems have similar issues.

Critically interrogating concepts of citizenship and personhood. What are we not talking about in Dementia studies – what’s being put aside?

We had a great discussion about learning disabilities, autism and disablilty movement…..and how dementia fits, or doesn’t fit into these movements…….

Andrea spoke of the fact there are still so many people that we’re not hearing from – those living in poverty, those with mental health issues and dementia, and other diverse groups…….and we have to respect that some don’t want to speak out said Agnes. For some groups, conversations happen over a cuppa tea….and these conversations are often more meaningful than at formal meetings…….

After a break next up was phd students giving a update on their project……each had 7 Minutes

The first student spoke of death and dying at the margins – her study is in Amsterdam but also in a rural area in south Netherlands.– she found some welcoming the end of life and how some wanted to hasten death

Euthanasia – people were very willing to talk about euthanasia. Me and Agnes spoke about the medical world making decisions for us. It’s almost a moral dilemma because we have to make that decision while we’re able.

They kept mentioning, ‘Queer Studies’ which I’d not heard of before and sounded offensive,  but it simply means sexual diversity studies……

Next up was the student from Russia – Nursing homes are the most stigmatised place for ageing in Russia. She is in the first year – and is working in various nursing homes in various regions. There’s a larger geriatric movement now developing in Russia and are being trained to introduce western ideas

. It’s still in the early stages and in a chaotic state especially when talking about dementia.

In Russia it’s sounds like the culture in Italy as families are reluctant to allow their loved outside to be involved in anything due to shame.

Last year the official numbers said there are only 800,000 people in Russia diagnosed but if the stigma is such, then it’s not surprising…..relatives don’t take their relatives to the doctor for diagnosis as they believe it’s a natural part of ageing.

The third was Emily, an English Literature student from Leeds. Her study was on Post colonial representation of ageing in film and literature written in the English language. …..challenging and romatiscing the concept of ageing. She looked at  gendered and racialised structure of care in the Caribbean ……and in New Zealand. Dementia is one chapter in her thesis and is just starting it. There was a discussion of the meaning of post colonialism…

Older people and people with dementia  are ‘othered’ in post colonial studies……is this good or simply creating another label?

She spoke of the bi health system that exists in New Zealand – one fro white settlers and the other the Maori Health system – soooooo fascinating……..

Next up was a second year student, Mah, from the Arts and Craft background….…….hers is a qualitative psychology study to investigate the loop experience of daughters looking after mothers with dementia……..she filmed mothers and daughters doing an activity together……including her own mother and herself…..and she showed us part of her film of her mother and herself sewing and chatting together…..she then did semi structure interviews as well as filming the activity….they then interviewed the daughter and they watched the video together and asked if they noticed anything striking or something they hadn’t noticed before. They often slipped into the carers role and forget, that the mum can be the teacher again through crafting…’s all about the relationship between mother and daughter and allowing a crafting activity to establish previous roles………again so difficult to find participants…

Mary next,from Scotland.  finishing her second year, her background is social work. She found those from black and ethnic minorities communities were finding it hard to find care in the care system.

So she’s exploring the black and minority communities accessing direct payment system.  They have been marginalised and oppressed when trying to access services. There’s a lot of research being done on the basics which is why she chose to research the Direct Payment system.

She also is interviewing social working involved in direct payment, carers who might believe need is one thing and people with dementia who might see their need as something different.

Mary is having real trouble finding people in Scotland from black and minority communities. Me and Agnes both said how this should form an important part of her findings..

James, our final student……his background, always had dementia in the family so his phd was based in the Midlands…..but again found trouble recruiting. He asked them who they considered the most important person in their lives. Academically he’s a Psychologist. He found that typically one person became the main carer. So he was interested in why, in a large family, does one person become the ‘carer’……he was interested in unpacking the family dynamics and peoples responses and tensions within the family. Many tensions were fuelled by the lack of services available to access. In almost all cases diagnosis was sought by the carer rather than the person with dementia and sometimes against their wishes.

What a diverse and fascinating range of phd studies……

After lunch we heard from Eman from the Central Scotland equality council. The charity recently decided to take on dementia as one of the countries very unrepresented conditions. They champion rights for people with dementia and carers but found it very difficult with barriers at every corner. “We don’t have people with dementia in our community”………

They questioned stake holders and asked if they’d thought of considering redesigning their services…….needless to say they hadn’t but at least they’re trying to bridge the gap. The direct approach didn’t work in finding people with dementia because people have a negative idea about services. A one size fits all service does not work with dementia……other people think they know best about individual needs…..for example they might think some people need an interpreter, but don’t think about the cultural sensitivity of that language……

Megan then spoke about an LGBT project being funded by Life Changes Trust… batteries were running low, and I havn’t done my bit yet…good job it’s all written down 🙄

Such a shame my fingers were losing the thread as it was another fascinating insight into dementia in the LGBT community….there was also bagpipes playing outside so my head was hearing everything and getting in a muddle…..🙈…. I glanced at Agnes and noticed her eyes closed as well, so I didn’t feel too bad…….

Agnes was up next …….so I forced myself to wake up a tad…….

saying how when she diagnosed there was no DEEP network, no dementia diaries, no Twitter and when you went to conferences it was all about the carers perspective  but over the time a group banded together and together gatecrashed events.😂 Behind the scene there was this movement developing, ……although we didn’t realise it at the time….she spoke of the emergence of Kate Swaffer and the Dementia Alliance Interational group being born….Agnes felt a lone voice and she found everyone talking about memory and her biggest challenge wasn’t memory but sensory challenges.

She spoke of us being ‘done to’…..but then the group of people with dementia started to talk behind closed doors about death, challenges and all things other people weren’t ready to hear.

People with dementia want partnership and to be treated as equal…….”

“It’s exciting times as people with dementia want to be in control of the lives and their death”

I then had to follow Agnes 😳…..and part of what I said was:

“In my humble opinion activism comes in all shapes and forms, taking on many guises, some outspoken in a public forum, some campaigning tirelessly,  others seeping into the very nature of people minds and thoughts to bring about change. All are a type of activism.”

We both spoke about the work we’re doing with with the Pioneers in Dementia Enquirers and It was then opened up for questions of which there were many including how we cope with professional criticism….with being taken advantage of by researchers and many more interesting ones……….

You can read this interesting and enlightening article by Linn Sandberg and Richard Ward from Sterling Uni here:

And I just love the piccie that appears at the head of the article

A Lovely Trundle to York………

Yesterday I was in York for a get together of Yorkshire DEEP groups. Now considering York is quite close to me – only 45 minutes by car… is one of the worst places to get to by public transport for an early morning arrival or to get home in time for the last village bus……..Northern rail, in their wisdom have stopped the direct train from Beverley and the bus companies have stopped the early morning direct…….🙈…..considering both are needed for workers, it makes no sense at all…..and makes my trundles very hard.

Moan over…

Anyway, so for a 10.30 start and 3pm finish I had to go by train. The taxi driver picked me up at 7.10 on a beautiful misty frosty day that would turn into summer by midday, such is the confusing weather we’re having at the mo. I was looking forward to seeing my playmates from Minds and Voices, as I missed the last session, but would also be meeting many new playmates from all over Yorkshire🥰

I was very disappointed with the state of the windows on the train so couldn’t get any nice piccies of the trundle🙄………but I passed by the river once I got to York, and that’s always a nice peaceful view.

I ambled to the Priory centre and en route picked up Damian on his bike and then Tommy and Paul from Liverpool! And we were joined inside by Scarborough, Bradford, Kirklees, and Halifax groups so our numbers had swelled beyond belief since the last get together.

Philly, Rachael and Rachel from Innovations started off by setting the scene for today and what we’ll be up to, including the launch of Dementia Enquirers to the rest of the network. ..I sat with favourite things of the day in front of me……..😊

The cartoon is by the lovely Tony Husband showing people with dementia in the driving seat of research….

After everyone said hello Rachael started talking about Our Right to a Grand Day Out project. She showed photos of the grand unfurling of our banners at York station.🥰 it was the culmination of 18 months work from people across Yorkshire living with dementia. Talking about our Rights with regards to transport and how a poor service confine us and how a good service enables us to get out and about as most of us rely on transport, so we have to feel safe.

Scarborough group talked about their Blue Badge campaign for people with Dementia and the outcome is that, once passed, it won’t depend totally on ability to walk but now includes ability to navigate. The proposal is due to come into being in April if Brexit doesn’t delay. It’s a post code lottery once again, as Tommy said they’ve had no problem in Liverpool getting blue badges……..the dreaded post code lottery again.

We watched the film from Bradford FIT group about travelling on buses. The update from them is that change is reeeeeaaally slow…..

Damian gave the update from our train issues and basically when we’re next going somewhere far afield we’re going to hire a coach……..says it all really. Nothing has happened, little has changed……

“You’ve got to get out and about and SHOUT” said Eddie……..😊

Here’s a few of my playmates from Minds and Voices – the rest were probably getting a cuppa😊

I think change sadly takes time, is very frustrating and the one thing we don’t have much of, but at least it’s showing others how people with dementia do have rights……..and do have a voice.

Just before lunch Paul and Tommy spoke about the work they’ve done on transport in Liverpool. Tommy often talks about, how in 2011, when he was diagnosed, you gain a diagnosis and with the other hand, a superpower – the ability to become invisible.
In Liverpool people with dementia train transport staff, buses, ferries, planes and trains. At the John Lennon airport, people with dementia and supporters are fast tracked through the system. It shouldn’t be a post code lottery though.

Rachel Niblock finished off before lunch by talking about the DEEP network and Dementia Diaries. We have groups all over the country from the Isle of Lewis in Scotland down to Plymouth ……the new DEEP Network now has a page for every group. Check it out here:

And so to lunch ……..cuppa tea time……ahhhh…..and the banners went up

Photographer Ian, gave us the dates and places where the banners will be on display.

There are now some new banners, Budding Friends from Exeter and Hope, We all stand Together, from Kent and the Oldham group called the Ragartmuffins who have a motto of Art for one, Art for all. The exhibition will be an amazing sight when they’re all together.

Me and Howard then spoke about Dementia Enquirers with Philly giving us prompts. If people, like Philly, feed me the right words, I’m as happy as Larry and will probably say the right thing. I imagine I said how it will give us the chance to turn research on its head and decide the topic for ourselves. Researchers coming through our doors on our terms instead of us going through theirs on their terms….but we’re not naïve enough to think we can do it on our own. We will need a lot of help but it will be on our terms.

There was much discussion about the questions each group might like answered through their research.

I’m sure there was something else but I appear to have stopped typing at that stage 🙄

In a blink of an eye it was time to leave….but not before the trio of us doing a Skydive a weeke on Saturday had posed for a picture together

I wonder who’s looking forward to it and who’s worried…….🤣😂

It was a very weird today as I thought I would love being with so many people with dementia……so imagine my surprise when I began to feel anxious. I realised I was anxious for those others who were finding it overwhelming. I just wanted to make it right for them and I couldn’t…..😔 I could see one playmate struggling and just wanted to make the pain go away and, of course I couldn’t, until there was a break and we chatted about his time as a policeman, then he relaxed and chatted…… sad is that……too much stimulation and noise often muddles the world around us. It WAS a wonderful day though.

Anyway, a walk back to the station along the famous walls was just what I needed to calm my banging head and get my final piccie of York with the Minster in the distance….

Why are we deemed so worthy of so little….?

Recently I’ve met many people and heard many sad familiar stories. I’ve had emails from people saying they don’t know where to turn to or where to look, even in areas where I know there is support available. People wanting to help themselves but needing support and advice to do just that.

I’ve often said, ‘we don’t know what we don’t know’. It’s so hard to know where to start if you don’t know what’s available and the best people to ask. Many people find it difficult to search on-line and I help where I can but why should it be like this for people diagnosed with a life limiting condition?

I met a speech therapist in Scotland who spoke of the pilot scheme she’s involved in. For people with dementia who have trouble finding words…….brilliant⭐️

When a person has had a stroke and they have trouble word finding they are automatically referred to a speech therapist……why isn’t someone with dementia also automatically referred when they have trouble with word finding?

When someone has had a stroke and has a gait problem they are automatically referred to a physiotherapist……why isn’t someone with dementia also automatically referred when their gait changes…….?

Many people with many conditions who have a problem eating are automatically referred to a dietician……so why, when our taste buds change or we don’t feel hunger are people with dementia not automatically referred to a dietician…….?

Why isn’t our hearing automatically checked at regular intervals for such things as hyperacusis – why did people with dementia like Agnes Houston have to highlight this issue to professionals for the rest of us to benefit?

If I was diagnosed with cancer tomorrow would the phone stay quiet and no treatment be offered? So why when someone is diagnosed with dementia does the phone remain silent……..? Why is it up to us to find the service?

If you’re diagnosed with diabetes, you have regularly check ups. So why are we often discharged from a memory clinic into the hands of our Gp and then simply told ‘Oh it’s just the dementia’ when raising issues.

If someone is diagnosed with cancer people rally round and tell you to fight it. So why when we say we have dementia are we given a sad embarrassing look with no words of encouragement?

Why do we have to try to venture into the maze of bureaucracy to find, MAYBE, what we need? Why is it assumed that charities will plug the gaps?

We don’t know what we don’t know yet many services expect us to find them. Many benefits expects us to know they exist and how to apply for them. When we receive a diagnosis can’t that sort of information be available and not just with a pile of leaflets?


As children we want our lives to fast forward and the thought of being ‘older’ is exciting, bringing us independence and being able to do what we want. We protect our children, we worry for them and most services are there to make sure they develop as they should (I’ll miss out mental health at this point)…….but with dementia our lives can ‘fastbackwards’, we regress to former times. But unlike children growing up, we have no choice or control over the regression. Some carers describe it as being like ‘looking after a child’……so why does the health service not work in reverse and provide appropriate support and help for those supporting and people with dementia as a matter of routine?

Yes I know all this costs money and the funding isn’t there but why is it that people with dementia are ignored and not deemed worthy enough of help? Why do I feel like we’re at the bottom of the pecking order simply because we have dementia ?

Ramble over………

Devon Care Home Teams Annual Conference….

Together Towards Tomorrow……

I’m  glad I ventured into this unfamiliar world, not only because I was talking to new people but also because I learnt so much. A very long blog but as you’ll see an awful lot of stuff you may be unfamiliar with…….

So my busy week continued on World Alzheimers Day on Friday with a conference I’d never attended before – a Care Home Conference. However, I don’t make things easy for myself and this one was at the other end of the country in Barnstaple Devon.

Anyway I’d made my way down from the Birmingham conference to Barnstaple via WALES, which I wasn’t expecting 😳…….but the fact that every other passenger was looking worried was a comfort and, once again, I had my lovely Twitter friends reassuring me it was due to work on the tracks.

I finally arrived many hours later to a dark very wet Barnstaple but Becky was there to drive to my next hotel for the night. Someone showed me to my room and I was met by a lovely surprise…..Becky had already reccied my room and left me a box of `Yorkshire tea, Devon scones and post it notes!! Not only that but she’d covered my black TV screen with a red pillow case…….thoughtful beyond belief…..😍

After breakfast the next morning, Becky arrived to pick me up along with Sharon, who was also a speaker, along with a huge teddy donated for the raffle – I didn’t dare buy a ticket in case I won him and had to get him home too!

I was up first and spoke for 45 minutes including this:

I wonder how many of you always sleep on the same side of the bed? Most people do. But when you’re in hospital, or you’re moved into a Care Home people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia.”

They were so warm in their applause, appreciation and comments afterwards. One couple where the husband lives with dementia, said that through my talk she’d found ways to overcome the frustrations for her husband. We chatted for ages over a cuppa which was wonderful. Always nice to meet new playmates.

After me was Sexual Intimacy in Care Home by Dawne Garret from the Royal College of nursing.

Sex is a subject healthcare professionals in care home have problem discussing. Dawne said, older people are sometimes just waiting for you to ask – for example, the side effects of some medication might affect the ability to have sex but is so often not highlighted.

A sexual experience doesn’t have to mean the physical act. When older people were asked for their meaning of sex, the answers given by older people were ‘Being close, cuddling, kissing, music and dancing. The courtship of older people, often the most unchaperoned relationship you had with a potential partner would be around dancing, so for many people, music and dancing are something sexual.
This will disappear with the next generation as that wasn’t part of their life. So interesting and rarely highlighted.

She asked the audience to raise a hand if their residents were able to share a bed with their partners and I couldn’t see any raised hands……..Dawne said this was very common…….☹️

She gave a case study of 2 residents who had begun a sexual relationship and they both consented to this. But the male says the staff must under no circumstances tell his wife who visits him every week.

She asked what questions they should be asking……

They asked about mental capacity and both residents had mental capacity to consent
Someone asked if he was a persistent philanderer But they don’t have the right to impose own morals but they do have to recognise its affect on care
Sexual health regarding sexual transmitted diseases should be addressed as the increase in the over 60s has shot up.
Sexual health clinics are often tucked away in inaccessible places to older people. The language is often very different from that used by older people. Sooo interesting…….

Older people often think they have no risk because they can’t get pregnant so so they must have support and advice about sexual diseases.

The legislation around sex is very ambiguous as no judge wants to touch it. The guidance the RCN has written was written with the help of a barrister with an interest in Human Rights. “Best Interest’ doesn’t work for sex – you can’t make a judgement on anyone about sex or marriage.
Discussion with the team needs to happen. This threw up an awful lot of concerns .The first duty of care is the resident.
It showed how prepared staff need to be around this and highlighted the fact that the next generation will be quite demeaning and know their rights.

Staffs cultural moral views must be supported yet the prime driver is the residents RIGHTs……but the exploration of the intricacies and issues raised was wonderful.
When you also take in same sex marriages, LGBT community who worry about entering a care home, those with a history of sexual abuse, those having committed crimes of a sexual nature, you can see what a minefield it is.

She was wonderfully open and a fascinating talk. Fascinating controversial subject that I imagine is often swept under the carpet or ignored in many situations. It’s so important for owners and managers in care homes to give staff support and guidance on coping with these sensitive situations. The family’s also need to be supported.

Google RCN Care Home journey and the guidance is there.

During the break I sold all the books I had and could have sold many more. It was so sad not to have some for all people who wanted them but my suitcase was only so big and I did have to make room for clothes and Yorkshire tea bags!

Sharon from the Queens Nursing Institute was up after the break. `They’re based at the Royal College of Nursing. They set Standards’s for Education and Practice.
She spoke about the Queen’s Nurse Title. She told community nurses in the room to think about becoming the Queens Nurse. They can applying free for a leadership programme.

Sharon has been immersed in Care Home work for the last 18 months.

She found how care staff in care home are paid less than those who look after our rubbish…..says it all really how undervalued care home staff are.
She has written a publication for nurses on Transition to Care Home Nursing. It was the most difficult piece she’s had to write. Do they have the skills to be a nurse in a Care Home?

Nurses feel isolated in care homes and have to make high level decisions alone. There are few leaders and national role models in Care Home nursing and poor integration with the NHS. As with many organisations she found communication was a nightmare.

Sharon gave a lovely quote for me for care homes nurses :

Appreciate the Artistry of your craft”.

The Deputy Director of Nursing then spoke about recruitment and retention. The Nursing associate role is a new role and they’ve been looking at what the role should look like to fill certain gaps. She’d brought along a Health Care assistant who was undertaking this role. It opens up conversations about looking at skill mixes slightly differently and how this role might be used in the Care Home setting.
Helena, a trainee Nurse associate then spoke about being involved in the pilot. Helena is nearly at the end of her training and says she feels, “so proud” to have shown how her skills have shown what a valuable member of the nurse family associates could be.

It made me think whether these people, who may have become nurses before the degree course was born, yet weren’t academic, but are wonderfully caring. are now able to climb the ladder of their choice.🤔

3 more speakers before lunch

Firstly, Pathfinders is a multidisciplinary team who work at the front door and backdoor of the trust. At the front door they try to ensure those who don’t need to be admitted to hospital aren’t admitted and at back door work with the most complex patients around discharge.

Then Peter Clifford through North Devon Hospital Libraries filled everyone in on the resources available at the library and the changes that have taken place.

Finally it was Ruth Morgan who spoke to them about distance learning and learning from home and what’s available.

Over lunch many people came over to chat but one professional from the local Memory Clinic arrived and people told him to talk to me. He asked me:

‘Considering our time limitation on delivering diagnosis, what should I concentrate on?”

He expected me to talk about the detail so was surprised when I simply said,

The language you use”…….

I went onto to say something I said in my talk about the psychological effect of language should never be underestimated and how that, along with body language, should be used to deliver a diagnosis positively……

The lightbulbs shone bright and clear. I just hope he takes it into practice……

After lunch I think the previous days chaos was catching up on me and I was just staring and sometimes listening but not typing. But I enjoyed tha Heads and Tail game to wake everyone up after lunch.. Everyone put in £1 and stood up and put their hands on their heads or tail. Someone tossed a coin and those that lost sat down. It went on until the final 2 and whoever was left standing, won. What a great simple quick fun money raiser – must use this at all our events to raise funds!

Today I learnt so much that I hadn’t heard before. Obviously I won’t remember much at all if anything, but I loved sitting and listening to different yet invaluable stuff, listening to different healthcare professionals, from different environments ……

Sooooo worth all the chaos and traumas of getting there – loved it because of its difference……..

A Contentious Blog on the end stages of dementia……

I am known for talking about adapting to ‘living’ with dementia; emphasising the positives, living in the moment. However today I also want to talk about the end stages when I may not be able to talk about my feelings then, so what better time than to do it now while I’m still able. To express my views of the time when the blogging Wendy no longer exists and when dementia has won it’s cruel game of hide and seek.

This is in response to the article by Polly Toynbee in the Guardian last week:

Polly Toynbee starts off her article about former Guardian journalist, Katharine Whitehorn, who is living in the late stages of dementia, by saying:

Before Alzheimer’s claimed her, the legendary Observer writer made clear her view that the ban on assisted dying is cruel”

As someone diagnosed with dementia 4 years ago, I too am saying pre and post diagnosis that the ban on assisted dying is cruel.
I’m asking the question – is death better than allowing my brain to be claimed by dementia? I believe so.

Toynbee came under criticism on social media for her comments and I for one fell under the spell of retweeting these comments simply because I trusted the views of the person and not because I’d read the article for what is was – an honest, thought provoking article –

That’s what her two loving sons say and they want it written the way she would have”

Would I want my daughters to be criticised for wanting to express my thoughts once I tip over the edge into someone I don’t know? The thought of that makes me so sad – So I’m stating that now for all to see and for those who do criticise, to refer to my writing in the future.

We must remember that everyone is entitled to their opinions of assisted dying. For some it will be totally against their beliefs, their desires, their religion even. For me personally it’s a conversation that needs to happen and I admire Toynbee for writing such an article as it certainly got the conversation going.

Her old self would not recognise herself in this other being who sits in the care home dayroom. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.”

Yes, I do believe, as others do, that you should see the person, not the dementia. I just don’t want me as that person to be seen at all.

It is often said that once I’m gone over the edge it is my daughters who then ‘suffer’. When I’m no longer able to question the language used. When the word ‘suffering’ become an insignificance for the me that will be. The fight being over.

One of my 3 greatest fears is going over the edge into someone I wouldn’t recognise today.

Would I want to sit in a care home – No
Do I want to be dragged over the edge by dementia? No
Would I want to sit blissfully happy yet unrecognisable as the me that is currently – No
Would I now want my future self to fail to recognise the 2 most precious people in my life – of course not.

So why shouldn’t there be an alternative?

Some people have said, ‘You havn’t thought it through, what happens if your happy and content in your new self? You don’t know how you’ll feel’ …….I sigh at this point…..they’re missing my point. I don’t want to be that person……I’m making that decision now. Once again…… I’ve said it before

I refer to Euthanasia in my book, Somebody I Used to Know.At the moment the only alternative is to fly to Dignitas. But I don’t want to fly to a strange land, to be in a building I don’t know, to be in a room I don’t know. To know now that my daughters would have to fly back alone. Even the proposed new laws in Guernsey refer to those terminally ill with a limited time left – but we’re never going to have that luxury of time defined end. Another prejudice against those with this cruel disease.

But why should dementia winning this battle be the only option open to us. I have signed the ‘DO NOT RESCUSCITATE’ forms, but often those with dementia have strong hearts that end up being the allay of dementia and keeps beating allowing it to turn the screws tighter.

We are in a catch 22 situation ……the law is on the side of animals not suffering but not humans ……..

Yes, it is an immensely complex moral, ethical and legal issue but should it also be considered as a simple matter, simply as a matter of choice? There will be those who fiercely negate such a thought – that is their choice – but shouldn’t those of us who believe in euthanasia also have the same right to choice?

Someone recently said ‘Very few of us experience a natural death’ – can’t for the life of me remember who or where I saw it…….but it is true – we die as a consequence of some event, some disease, some tragedy, some accident……but if dementia is our only way to death, it can be a long slow process if the rest of our organs are still functioning…..

All of this contentious, I know, but simply my views – please remember these words in the future if dementia sneaks up on the blind side and wins its game…..and especially if a journalist relays my thoughts as I’ve written them now, just as Polly Toynbee tried to do on behalf of Katharine Whitehorn and as I’d like my words to be told in the future, unless the law changes……..unless……..

I’m fighting for a Good Life with dementia, so surely I should have the Right to a Good Death too……and if you don’t agree with me, live in my shoes for a day……

In Toynbee’s final paragraph she writes:

But even those who think carefully about how they definitely don’t want to end up find that rational plans, made in good health, usually slip away during a step-by-step medical decline, no longer in sound enough mind. Too late to say stop”

That ‘cliff edge’ is a very unpredictable precipice – no one knows when dementia will pull the mat from under you and let you fall. This is what makes assisted dying so contentious.
If we had cancer, medics could hazard a guess at the length of time left when near the end, but dementia doesn’t allow us that luxury.

I’ve said often before – I wish I had cancer, because then I could refuse treatment and I would have a legal way out of this world.

I applaud Toynbee for her writing. As her sons said, “……..without doubt, that if the real Katharine could see herself now she would be horrified” just as I would be horrified to see myself in such a situation when dementia makes its final move and I’m no longer capable of outmanoeuvring it – will people criticise me then for the thoughts I have now? Will they criticise a journalist for speaking my words for me?

The fighting dementia in the mind goes on long after it’s seeped deep into our brains, and when, for a moment we win, the screaming emerges, just as it would from me…

Mostly, Katharine Whitehorn is placid, but in rare flashes of depressed lucidity, her sons say she asks for it to end, to stop now.”

Well you’ve heard my views from me now while I’m able and I hope journalist will take up my mantle and speak out for me if dementia is allowed to win me over…..on how I will hate the end result and want that choice of the final release…

Why I chose to step down from the 3Nations Dementia Working Party….

So following on from yesterdays blog on giving yourself an MOT, I thought today I’d tell you why I’ve stepped down from the 3 Nations Dementia Working party. This was for a different reason and I didn’t want people to think I felt it wasn’t important because nothing could be further from the truth.

I used to enjoy our 3 monthly meetings. Spending time with the most wonderful people on the planet.

Some members have come and gone for a variety of reasons but I always promised myself that if I ever stood down, I’d have a replacement for me from Yorkshire to offer up as a suggestion. I also thought I wouldn’t stand down until my term of office was up!!

However, at the last meeting I suddenly felt out of my depth. I was suddenly in awe of the knowledge of my wonderful playmates; knowledge I knew I didn’t have.

I felt I was there for the wrong reason. My reason being, I love to be with all the wonderful people, however that isn’t reason enough. Yes, I can blog, yes I can write a speech, but that’s where my expertise stops. I’m with people who are supremely knowledgeable in Human Rights, in the law, in being able to stand their ground on so many things over which I have so little stored in my memory.

I’ve always said our uniqueness and our unique talents is what makes our group but I feel my talents aren’t the right talents for the group and should be replaced by someone who has more of what the group needs.

And so I’ve stepped down. I’ve made my recommendations but, of course, due procedure has to be followed as there may be others to consider.

It’ll be me who misses out on this wonderful group as no one is irreplaceable. I’ll miss seeing all my playmates in one room but I know we’ll see each other in different circumstances and that’s a great comfort.

Of course, me stepping down means someone more appropriate can have the pleasure of being in the company of these wonderful people.

I will still carry on doing what I’m doing and following and supporting all the work they do. I may be gone in presence but I’m still there looming large and promoting all they do.

Unfurling of the Great Yorkshire Banners…….

So yesterday I was due at the research network arm of the Alzheimers Society for the second day of their conference, however, I had a change of heart……..
The night before was the evening meal at The Oval. I usually decline the meal and sit happily unwinding in my room with a tuna sandwich…….but yesterday so many people had come up to me and asked if I’d be there that I felt I should give it a go…..

It wasn’t until I got there and one of the society staff asked if I’d be in York on Wednesday and I felt so guilty saying no, I’d be in London instead. Over night I decided that I should and want to be in York with my playmates so decision made, then panic stricken for letting the research network down🙈….I really need 2 of me………☹️

The wonderful A Team from Yorkshire were there to look after me for the evening meal so I was in safe hands as were my playmates from the 3 Nations. I’d known some sad news early in the day and it was announced at the meal last night. The news that Matt Murray was leaving the society.

Matt was the first person I ever met in person from the society when I saw the button on the web site to ‘Be Involved’. It was then that I joined the research network volunteers and our wonderful friendship began. I trusted Matt. He allowed me to break all rules and become a monitor ahead of the usual time simply because time is an unknown quantity for someone with dementia. He always said what he was going to do, when he was going to do it and always responded quickly to emails.

Everyone moves on, and Matt is a wonderful catch for any organisation but I will miss him dreadfully and I’ll always have special memories of Matt.

I only lasted the first course before the noise and buzzing bees of conversations around me became too much and I left them to it……

So the next morning I woke and started working out my new plan. I txt Sandra to say why I wouldn’t be there and then I went and checked out and saw people in the breakfast room so was able to apologise in person……

I also had to txt Gemma so she wouldn’t pick me up in the evening!!

I had to be there for midday…..I realised when I eventually got on the train that I’d rushed the planning and didn’t find the best train, but hey ho……too late ……..

I arrived at the station to find the Tony Husband, Ian Beesley and Yorkshire tea voice man Ian McMillan setting everything up along with Philly, Rachael and Damian from Innovations in Dementia – all of whom have made this event possible…………

Philly earned her first brownie point of the day by immediately going to get me a cuppa tea……….as Virgin train didn’t have enough staff for a trolley service on the train, so I was gasping!

The media arrived in the form of the local BBC and the radio was there I think too……marvellous …….my playmates were wonderful at speaking up.

A brass band of children arrived to play a fanfare

before the unfurling and then several playmates stepped forward to reveal the wonderful banners created by an amazing designer with wonderful images by famous cartoonist Tony Husband. Equally famous Ian Macmillan read out 2 amazing poem and then the reveal happened. What amazing banners which just say it all……..

The negative side of travelling ….

The equally famous (have to treat them all fairly🤣) Ian Beesley said:

‘“ unfurling the banner cos we’re unfurling the future” wonderful……❤

And the positive side…

Many photos were taken and so many members of the public came over to ask what we were up to and the children in the band were amazing. The local BBC and newspaper were also there .

Minds and Voices with photographer Ian Beesley…

Once everything was over we had one last photo en masse in front of the banners. The banners show one negative image and one positive image and what travel means to us folk from a Yorkshire viewpoint….transport and our Rights…………

We had a coach back to Priory Street, lunch and a debrief………we were all on a high as it had been such a success. Yellow ‘I want to speak’ cards were up all over the place in the room.

And what a wonderful booklet to come out of this amazing experience for us all – full of cartoons, photos, poems and stories – superstars⭐

With our wonderfully smiley Rita on the cover….❤

Travel is so important to me, yet is so stressful. Yet small changes can make it possible.I’m so glad I changed my plan today because all our words of the past 18 months, today became an ACTION of our own…