Category Archives: Human Rights

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…..it 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…..it’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…..my 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:

https://criticalgerontology.com/calling-for-a-more-critical-dementia-studies-criticaldementia-network/

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…..it 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:

https://www.dementiavoices.org.uk/

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……..how 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:

https://www.theguardian.com/commentisfree/2018/may/29/assissted-dying-katharine-whitehorn-alzheimers

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……..as 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…

Our Right to get Out and About…..

Yesterday I was in York. I’d snuck this in last minute as I’d cancelled a meeting in London due to being there the following day as well, but couldn’t resist adding this extra one in……🙄

A while ago there had been a similar meeting in York of 3 DEEP groups from Bradford, Scarborough and my playmates from Minds and Voices – all people living with dementia. Last time I’d met Ian Macmillan, the voice behind Yorkshire tea, but this time it would be Ian Beesley, superstar photographer and Tony Hubbard, famous cartoonist.

The aim was to design a traditional banner for us in the style of Trades Union about our Right to get out and about.

It was a beautiful day as the taxi took me past the Westwood and yesterday the town cows were finally let out to roam for the duration of the summer. They must have been very excited to be out after being inside the whole winter………

And the view from the bus as we trundled through the Wolds looked equally lovely.

I arrived to find Philly setting up and the tea had just arrived👍 It was soooo nice just to be a playmate today and  share the pressure of the day.
Think I was probably on my 3rd cuppa when playmates from Minds and Voices started to arrive, followed by the Scarborough gang and the folk Bradford. Photographer Ian Beesely soon arrived followed by Tony Hubbard the cartoonist…..

Some of the funding for this project has come from the IDEAL project at Exeter University….and started last year when travelling was becoming a real issue

Ian and Tony then took over the session and mentioned that their third musketeer, Ian McMillan (the Voice behind Yorkshire tea)was at a pie eating competition😂🤣😂🤣………..

We were here today to discuss ideas about the banner and then about the unfurling of the banner at a prominent place in York during Dementia Action Week………

The banner will be ‘The RIGHT to a grand day out” – 2 meters wide and 3 meters high😳. It will hopefully be double sided. There will be smaller versions, postcards and a digital version…….

Ian, Ian and Tony have done the ground work and brought a rough outline today for us to comment on. One side will deal with the negative aspects of getting around and the other side will be the positives…..

At the top we’ll have YORKSHIRE DEEP with a shield with a flourishing rose on the one side and a withered rose on the other……4 cartoon images by Tony in each corner of traffic  jam, stuffed bus etc……….This is a mock up and starter for 10 but by no means the finished article..

We immediately said how ‘Yorkshire DEEP’ should be replaced by ‘Dementia Voices’

Front of the banner will be positive images and have Yorkshire images…… for example, Yorkshire pudding and ice cream, Yorkshire tea and a pint of beer……….🤣😂🤣……………but other ideas were flowing from the group.

The railway lines on the front are easy to navigate, whereas the lines on the back are confusing……

There was loads of ideas……..and disagreements……and discussion……

We then went round discussing the venue for the unfurling………York Station, York Minster or National Railway Museum….or all three……….and I said we need Radio York, York press and Yorkshire Post, BBC there…..Ian is on the case…..

Weds 23rd May is unfurling day……during Dementia Action week and will be in York…

We were then showed a photo of 2 miners…..and I asked if it was Tony and Ian’s Calendar pose🤣….they even posed to show the similarity….🤣

He then read out Ian Mcmillan’s lovely poem that he’s written for us …..

And then showed us a copy of the idea for the chat book in the format of the old type Yorkshire magazine…….and our Rita would be on the front.

It would contain lots of the photos we had taken during our day our last year and the cartoons that Tony created.

We need to include a piece about each individual project that each individual group did….Scarborough and the Blue Badge scheme. Bradford and bus timetables, and Minds and Voices and our train travel………

We were all beginning to flag so time for lunch……..or for me….a cuppa tea…..

After lunch there were 3 things on offer – talking to Tony the cartoonist about any issues we’d had travelling, talking to Ian about any more thoughts on the banner and talking to Philly about Dementia Diaries……I really can’t do decisions, I need direction, so joined Philly to promote the diaries and we ended up with 4 possible new members, including my friend Liz from Scarborough.

Because I don’t use the phone, I usually send Philly my words and she records for me. Today, Philly allowed people to have a go on her phone and because she set it all up on speaker and dialled the number I could record as that’s what me and my daughters do if they have to make a call on my mobile – they have it on speaker.

They’re trying to get the diaries global so that people across the world can record their message. Tomo, who I met from Japan is joining and there’s a university in America which is really keen to bring the diaries to the States! – brilliant.

It was a really good day once again, but very tiring……couldn’t resist this last piccie as I was waiting for my bus near the station though………

Why do we let people down at the end if life?….

Yesterday we heard in the news of giving the last Northern White Rhino, Sudan a dignified death, because he no longer had any quality of life. “Sudan was put down by veterinarians at the Ol Pejeta Conservancy.”
He was the last male Northern White Rhino, yet his protectors decided this was no reason to keep him alive when he was in pain.
“He was put to sleep on Monday after age-related complications worsened significantly.”

Of course the keepers were devastated and very sad…..just as we are when a loved one dies……

So why oh why do we still allow humans to have an undignified death?

Yes, I know, it’s a contentious issue, but one which needs to be out in the open. TALKED about….
Do we strive to keep loved ones alive for selfish reasons? Because we can’t face life without them? Who benefits from life being extended? If someone has a life limiting condition, has lived a normal life in the past and then decides they’ve had enough of outmaneuvering the condition, why shouldn’t they be given the option to die? If someone is in a coma or clinically brain dead and previous wishes have stated they would prefer the machines to switched off, then why not?

Yes, of course there are many discussions to be had about capacity and ethics and wishes and all the rest but at least let us get the conversation going. Difficult decisions are never easy, but to pretend they don’t exist until the event itself arises just hides what we should be talking about now.

The same situation arises for me, when hearing about loved ones denying organs being used for transplant and overruling the wishes of their loved ones…….why is someone allowed to overrule the wishes of the deceased, simply because they have died and they don’t want their organs used in this way?

Yes, I’m talking about dementia but it could be anything. I don’t want to go over the edge into someone I no longer recognise, I don’t want my daughters to experience that. Yes, I’ve got all the Do Not resuscitate in place but often, our organs far out live our brains deterioration. My organs may keep me alive for years to come but I wouldn’t want to live with a brain that was continually declining.

Why has Dignitas been around since 1998 in Switzerland and yet here we continually strive to ‘keep people alive’? I know clinicians find this a hard concept as it goes against all their training. There are others who believe it’s not for us to choose. Some for religious reasons, others by pure choice. But that’s their belief and their choice. My choice is to decide when I’ve had enough.

We always say we treat animals better at the end of life than humans and it’s very sad to think this is still the case.

Yes, I know many people will be horrified at the subject but as we’re always saying, not having difficult conversations never made the subject magically disappear…..

For me and in my humble opinion a good death should be about choice. Choice where we are in our final days or hours, Choice who we are with, Choice over when we die when faced with a life limiting condition or in certain situations where life is untenable, Choice whether we’re buried or cremated.

I’m sure this will upset many people, and I’m sure many people will disagree with me, but that’s what discussions are all about. All I want is for the conversation to begin and continue, as one thing is sure in life, that we will die, so why is it such a taboo subject?


Not only time to think but time to TALK….

Design School for people with dementia….

So yesterday saw me heading to Birmingham for an overnight stay. I’d actually snuck this one in as Tuesday was supposed to be a day of snuggling but I couldn’t resist the opportunity, and why? Well I would be seeing my dear friend Agnes Houston.

Agnes was the first person with dementia I remember meeting when I was first diagnosed. It was at my very first event in York. I was in awe of Agnes and it was she who showed me how there was still so much living to be done. It had such an impact on me that I recount the meeting in my book. I saw her quite a few times after that but don’t think I’ve seen her for ages, so when she emailed me about this event in Birmingham I had to fit it in somehow…….

It’s been quite a mission though as the following day I have an early start in York🙈 as it’s an event I’ve played a very small part in organising…..so I couldn’t opt out of that one either…..but the weekend and rest days are not far off……I keep telling myself🙄

Anyway, back to yesterday….after yesterdays none stop deluge of rain it was a relief to see it was dry today. The Humber was very still and calm as we trundle by…

I was heading to Birmingham International for a Dementia Design school organised by Dr Julie Christie, from Dementia Centre, Hammond Care. They’d sorted out my travel and someone was going to meet me at the station.

I hope Agnes realises the effort I’m going to 🤣😂🤣 as it means travelling to my least favourite station (have to change at Birmingham New Street🙈) AND I have to travel on my least favourite train line (Cross Country🤦‍♀️)…….so I’ll actually be glad when it’s Wednesday and I’m back in York🙄 ….but the fun we’ll have will far surpass the trauma of the journey……

Dawn was meeting me at Birmingham International but in the meantime I had to fight my way out of the train at Birmingham onto a platform that was heaving……..then heard someone say it was Cheltenham races today😱…..but luckily there was a nice guard who told me where to get my final train and showed me to the lift😇

Dawn was there ready and waiting for me and we made our way to the hotel to be met by the sight of Nigel, followed by Agnes who had brought me Yorkshire tea!!, Tommy and Joyce and Paul from Liverpool soon joined the party. Mary Marshall was also there (social worker) along with a new playmate, Kath from Ireland. Dr Julie Christie and Colm Cunningham, Director of Hammonds Care Dementia Centre had flown over from Australia……….


New playmate, Kathy, from Ireland with Nigel.

Once everyone had arrived and after a cuppa Agnes started off by welcoming us


Col Cunningham (Director of Hammon Care along with Agnes

Hammond care are very good at consulting people with dementia AND putting the outcomes into action….Agnes has worked with them for many years.

We went through the tables and just introduced ourselves. Mary then went onto the main aim of the day – Introduction to design and why it matters…….

Mary showed slides of what she teaches professionals for us to chip in – it focuses on older people – most of the time we don’t think about the design of buildings until things go wrong……confusion between ageing impairments and good design for people with dementia. Most people with dementia are old and dementia adds to the physical and sensory challenges that come with age.

So many were things we already knew, as we knew we would, but Mary spoke of lungs working less – in a stuffy room this can cause people get to sleepy, but people with dementia decline even more….

The biggest revelation was around the use of air fresheners! Don’t use air fresheners as they contain harmful agents for people with breathing difficulties – open windows. The automatic air fresheners provide lung problems. Often windows won’t open in hospitals and care home but If the rooms in care homes and hospital are continually hot, which they often are, it can lead to dehydration…… Gardens are the most underused area of care homes – as it’s too much hassle. Research has shown the main reasons care staff for not allowing people with dementia to go out is the weather……..🤦‍♀️🙈

Mary spoke of colour – Much easier as you age to see red, orange and yellow than blue and green. Lots of tosh talk about colour – many think orange will help people eat and blue help people relax in living room – no research to prove this. Dispense with that tosh and consider colours have to be vibrant. Contrast is the key – if you want people to see something it has to be in a contrasted colour.

So many interesting things came up – too many for me to keep up with – but then it was time for a breather and a nice cuppa tea…..


Cuppa tea time…Nigel, Tommy, Agnes, Paul, Kathy, me and Joyce….

Back in then to continue with Mary talking about design of everyday areas – as the hours passed some key themes kept emerging…….

Firstly , We need to join forces with the other disability groups to make places accessible to many. British standards INstitute are being re written in the next 4 years and we must make it include cognitive issues as it currently deals with wheelchair access and visual impairment. The british standard is built into regulations so now is prime time to influence for building regulations. We don’t want new building that still aren’t right when built.

Most cities have ‘disability access panels’ – it’s mainly about wheelchairs and vision impairment – we have to get cognitive and perceptual issues considered. They are a powerful group. Many disabilities rights group are wary of people with dementia…..so we have to get ourselves on those panels, as they believe we don’t have the ability. It’s joining forces with other disability rights groups……..many disability groups are established and may not want to see us piggybacking onto their organisation. But our role is to show them the benefit of having us connected.

Secondly, We need to get Architectural schools to allow us to speak at their conferences. We need disability not to be seen as a burden but celebrating what we can do and be enabled to do that and design can be the starting point. A new bunch of students to influence…

The third action could be to Focus on one major hotel change that we frequently use for conferences. If we change one hotel group in design that holds conferences……others will follow when they see the financial benefit – we spoke lots of the grey and dementia pound.. We just need one to listen and change and others will follow.

A group of like minded people can change the world” – said Nigel…..

Many people said to the Dementia Centre:

you can’t have a design school for people with dementia’

Well we had it today. We’ve redefined what we thought we were here For today as we’ve taken it into the Political and Rights arena.


Great day together….

We were all exhausted by the end and I went back to my room for a quiet half hour before a final supper together. I said goodbye to everyone then as my taxi is booked for 05.30 in the morning to get me to York…..🙈

More can be found about Hammond Care at

www.dementiacentre.com

and it also has a wonderful video of Agnes….


Lovely goody bag with 2 books on design…….