Category Archives: Reflections

Another hazy day and my mood drops……

Last week I wake up to another hazy, foggy day, fourth in a row. For the last three days, I’ve still gone out for a little trundle, occupied myself in the house, or simply given in and hidden underneath the duvet. But I was able to keep my mood on an even keele. Just living with the nuisance of dementia clinging even tighter, but not allowing it the lip service of acknowledgment…but today…..

The weather was dull, very breezy, rainy and univiting. My head felt heavy under the weight of dementia bursting from my head. The thought of a trundle just didn’t appeal, as if going out would make dementia visible , striding beside me. laughing at my slow pace for all to see.

No today, my mood matched the weather. I was fed up of dementia hanging around like an unwelcome guest. I sat in the Conservatory with my camera, trying to distract myself, to lift myself out of this state with the aid of nature. It worked for that hour, lost as I was in the camera lense watching the determined squirrel not be be out done by my squirrel proof feeders. A whole hour it tried various manoeuvres, attacking from various angles, just like the dementia was doing to me, attacking me from all angles, leaving me lethargic, empty and wondering what barrier I could put up against it, just like the bird feeders had been designed to do.

But after an hour of hanging upside down, trying to remove the lid, climbing up the fence and attacking from beneath, 

…the squirrel gave up and made do with the seeds the birds had dropped, them looking quite pleased with themselves at being able to hop on, take a tasty morsel and fly off in full view of this squirrel. Robins and Blue Tits, Dunnocks and Sparrows, all revelling in their ability to succeed where the squirrel had failed.

Just like I’d failed to outmanoeuvre dementia today. I knew how he felt, as he scraped up the left overs that had fallen to the ground…

I was getting cold, the heating not due on for hours. If I changed the settings, I wouldn’t know how to put it right, so I choose to leave it, easier that way. Upstairs, my bed provides a comfort of warmth and a view of the tree tops. I put a hottie inside each pocket, just in case…

I load the photos through the camera app, so they magically transfer  to my ipad. The light suddenly appearing on the camera signalling connection and the magic starts before my eyes. One photo after another making an appearance on screen. I feel my mouth turn up at the corners at the appearance of the squirrel, no emotion, just the movement.  My hands thank goodness know what to do, because my brain is riddled with sludge today, a thick dark sludge….

My eye lids, heavy from the lack of sleep these past few nights, seccumb to gravity, yet I feel my eyes wide open beneath the darkness, resting in the shadows. I despartely try and convince them to sleep but they like me feel empty today, driven down in mood by the constant attack from dementia.

Some days are easier to cope with, easier to ride the haze, allow it to have its way but today it’s brought me down, made me feel like I’m not winning this battle I didn’t ask to fight. 

I see a bag next to my bed and reach inside, not remembering what I placed in there and take out a single pebble. It smells of the sea, or is that my wishful thinking? I remembered I’d placed them there to do Christmas themed images on them. Without expression, without real interest mt fingers search my photos for images I’d found on a better day to try and copy. I slide the acrylic pens out of their box onto the bed beside me, all colours,but I  select a black one automatically to draw the outline, my fingers once again reassuringly helping me to feel human, to feel capable. I copy the image in front of me, bit by bit. A mushroom shape for the hat, a small squashed circle for the face, 2 circular eyes and a round nose, a scarf wrapped round its neck and a large round squashed body, arms at his side. I pick up the red pen and start colouring the hat, small circular movements or single strokes one after the other allowing me to colour it in, then the same with the scarf and 2 tiny buttons.

The only sound is the pen on the rough stone and my breathing. I would normally be full of concentration, full of enthusiasm but not today. Today I’m doing it to show dementia I can, but not with my usual conviction. I watch with empty eyes as the image comes to life

I sigh a huge sigh at its completion instead of with joy and satisfaction, but I did it. I realise the empty day will continue and resign myself to the fact that today is a sad day, nothing able to lighten my mood. And I feel my eyelids succumb to gravity once more and somewhere in the distance I hear a pen drop to the floor…

Are we ‘celebratising’ dementia…?….

Are we ‘celebratising’ dementia…?” A comment from an academic on Twitter last week……not sure if there is such a word….but hey ho……

It was in response to one of my tweets so I can only assume it was angled at me and maybe other playmates, didn’t know the person but jotted a note down to write this blog, then couldn’t find the tweet again 🙄……but ‘really’, ‘celebratising’? Are we not just speaking out in public to show we CAN? To show we’re no longer being silenced by society?

I asked my dear friend Google for a definition of ‘celebrity’…. It gave me 2….

a famous person, especially in entertainment or sport.’….well no, that’s not me….

The other being:

the state of being well known….’

Well the dementia bubble is so small, yes I’m ‘well known’ in it, but even then, only in certain areas and many others have been around far longer than me and are more ‘well known’. I just talk along on Twitter whereas others use other ways…

 I have fun on Twitter because I use it as a silent support medium….I show my weaknesses quite openly, because I hope it helps others.

Have I made dementia a ‘soft’ subject….a subject not to be taken seriously? I don’t think so. My form of activism may be ‘soft’ but it brings new people into the arena, a new audience who is listening. I’m loud on Twitter because I love that forum – my silent world of conversation enabling my fingers to do the talking and my fingers are far more articulate than my spoken word.

Does that make me “celebratise dementia”…… ? I really hope not as that’s not what I ever wanted.

As my daughter Gemma said on Twitter recently we live in an “inherently disabling environment”,  surely any voice in any arena is a powerful message that we’re here, we won’t be silenced?

I can’t be the serious activist with all the Rights data stored in my head, because that’s not me – I wish I could sometimes but I can’t retain Human Rights data. Many others are far better than me at that sort of activism and equally, if not more well known for it.

Yes I’d preferred to be known as a mum, as an author who wrote a good book, but it was dementia that gave me that ability to succeed in an area I’d never entered before so I do have to give dementia some credit there. I would only be known as a mum if I didn’t have dementia and only by a few friends and my daughters, so, yes dementia has brought me many new friends, has created a new world around me – so if I’m known by more in this small bubble of knowledge that exists in the dementia world, does that make me a celebrity, or simply well known by some?

I like to show dementia warts and all because that’s the reality. I have fun, I have adventures, I have totally rubbish days where I wish it was the end….I enjoy the social contact that Twitter brings me…..me a ‘celebrity’ – I think not…… I just want people to listen to take note and to think……is that what a celebrity wants? I don’t think so….

To take the seriousness out of this and to show the fun side of me….I’ll show you the piccie my daughter Gemma took of me while we were shopping in Leeds at the weekend…..

Nope, I can never be serious for too long and laughter and fun help me cope with dementi….I’d probably cry otherwise…..

 

 

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………

A Day at St Gemmas Hospice Leeds…..

Yesterday I’d been invited to speak at St Gemma’s Hospice in Leeds as part of a Community of Practice Event along with Clare Mason and Professor Murna Downs from Bradford University.

By pure coincidence I lived near the hospice for a year when I lived in Street Lane in Leeds. I actually remember going there for some reason but can’t remember why…….

Anyway, a cold morning awaited me and I headed out for the taxi with no coat, only to go in reverse and put my winter coat on before heading off to the station in the taxi……🙄 It was a beautiful morning trundling past the Humber…

Clare met the taxi outside the Hospice and paid the fare for me and then I was shown in and a cuppa tea was waiting for me. Murna and Lyndsey also arrived and had a huggle

The writing above the door of the room was wonderful to see…..

Improving Patient Care Through Knowledge”

Bradford Uni have worked in collaboration with St Gemma’s  hospice funded by Health Education Yorks & Humber……the staff were those who had attended the Train the Trainer course from 11 Hospices. But due to circumstances 7 were represented today….

The Hospice staff are naturally caring but it’s the added issue of dementia that causes issues. For example, a visitor with dementia simply forgetting the person has cancer, especially if that person is a partner……but so much else obviously
Jane from St Gemmas did the housekeeping bit before we all went round and introduced ourselves.

Murna gave the initial talk around the NHS Pathway for dementia and here specifically for dying well with dementia but also living as well as you can with advanced dementia. We need all staff to have access to the knowledge to put into practice the key learning outcomes…….

“We have to look at the Full Human Being with a medically complex condition……”

with many influences of background, age, biography etc and also with many involved – the person their family, care staff, Clinical experts and pastoral Carers……

Language – living with advanced dementia, end of life care, actively dying or terminal phase – what do we mean when we talk about this in the hospice setting.

“Are we involved in specialist care or simply humanistic care? “ asked Murna

We shouldn’t just invest in the ‘end of life’ care when death is imminent …….

I chipped in as there was lots of talk of living and dying well, because these are the words used on the NHS Pathway..

But I have a problem with this as ‘well’ for some people is very different for others. I prefer ‘as well as you can’. For some people, just getting out of bed one day is an achievement and needs to be celebrated. So the so called ‘person centred care’ isn’t ….because it can make those who struggle feel worse because their best is very different from another person. Dying well might not be achievable in all case but if the staff ‘do their best in the circumstances’ that is dying as well as is possible.

So now is was up to the hospices to feedback their learning from having delivered the course to their own staff…St Gemma’s  hospice was first and Gemma came up with how ALL staff benefit from training – the food staff, volunteers, Housekeeping and reception staff not just clinical staff.
Gemma spoke of the challenges, staffing issues and how to free staff etc but all attendees fed back positive comments.

Wheatfields Hospice went through their presentation and have all their staff going through the Foundation training before moving on to the more advanced which meant the groups were of mixed ability which made the groups so varied.

St Catherines Hospice in Scarborough. They started training 3 years ago and have trained 102 staff to date of all skills through the Foundation Course. Again the difficulty of getting staff to attend was highlighted.

St Leonards Hospice were up next and they both knew my daughter Sarah and worked with her when she was at York They spoke of needing to be more aware of staff circumstances as you might not know they are caring for someone with dementia or someone may have died in their family from dementia….
It’s important for those staff who believe they know too much to attend a Foundation course. It’s how you approach those staff and often it’s a case of stating that they need to attend to share their experience.

By having volunteers and non clinical staff on the same Foundation as Clinical staff shows the value placed on ALL staff. Hospices can’t exist without the working together of all teams.

Barnsley Hospice – Again the feedback was that it was nice to have all different skill groups to be together and mix together.

Harrogate Hospice was last but not least and also said how mixed staff groups worked very well. The expectation there is that everyone will attend, it’s not optional. The facilitator decide who attends what session so the mix is good

After lunch me, Clare, Murna and Lyndsey were taken on a tour of the Hospice and they asked me to comment on a room they were hoping to adapt. I gave a few ideas for change.
We headed out into the beautiful garden and couldn’t resist a piccie….

Once everyone was back in the room it was then my turn to speak. I covered as much as I could in the time allowed but the one thing that came out as most useful was when I said:

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 or Hospice people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia. Or think when dressing people which arm they normally put in first when putting on a shirt or coat?”

There were many flashing lightbulbs moments and some lovely comments and observations made after I’d finished. It was almost time for me to go but we snook in time for a group photo

 

During the discussion before I left on the End of Life Module Terminal Agitation was raised. Me and Clare were saying how at the End of Life it’s so important to see the person and not let the dementia prevent you from doing the best for that person.

Treating the symptoms the same as someone without dementia…”

said Gemma from St Gemmas.

Wonderful that there was no sight or sound of ‘suffering’ in either the talking or on slides……. All were willing to learn and understand more and couldn’t have been more receptive. They, as trainers, are all doing their bit to spread the word and could not have had better people to train them than those from Bradford Uni……..

Final blog on the Conference at Bristol…..

Following on from the blog yesterday…………

After a nice lunch I went to the talk on ‘Living with dementia in a rural area’ which is now quite pertinent as I live in a village, which is wonderful but does have it’s drawback. Dr Fiona Marshall from Nottingham University spoke of “Inward migration of older people to rural areas on retirement and outward migration of families due to affordability of housing and work.

It was a very good talk about what some people may see as a ‘romantic idyl’ for those who visit but what in reality is an isolating situation for those who live with dementia.

Those taking part frequently spoke of the difficulty holding all the links together to make life possible....
Those taking part frequently spoke of the difficulty holding all the links together to make life possible….

This picture is very fragmented due to the lack of data around numbers of people with dementia – we have to do something around data. How can appropriate services be put in place if data is guesswork?

Really interested to hear of Gp services being held in churches in the rural community as churches were held in higher regard than Gp so churches made their buildings accessible to allow many community activities to take part.
The Hubs of these communities centre around everyday activity – E.g the agricultural market, so services appear at these events – brilliant – services going to the community instead of community going to services.

It’s often a myth that rural communities look after their own because the demographics are changing so much – interesting …however ‘Farming life centres’ exist in the Peak District for people with dementia in rural areas to keep contact with farm life –magic. A farm where people with dementia can visit and ‘work’ on the farm. Interesting facts about chemicals in the past (e.g.sheep dip) and dementia – health and safety wasn’t around then as it is now…..

The final talk I attended was by Joshua Stott on Cognitive Behaviour Therapy

image

Why do we need CBT and how can we adapt it for people with dementia?
CBT is a talking therapy – allowing people to talk about their concerns.
5-21% of people with dementia also have anxiety disorders. Anti –depressants aren’t necessarily the answer for people with dementia.
The aim is to improve the quality of life. ‘Excess disability’ – how easy it is to function in everyday life – CBT aims to reduce the excess disability created by anxiety and depression in people with dementia.
They’re looking at adapting CBT to enable people with dementia to benefit as there are many challenges with the current method – The practicalities of attending – challenges of memory,and thinking….. Making it more structured by doing things in small chunks.
The supporter is also there but my questions to Joshua was around the honesty and openness of people with dementia when talking in front of their supporter – I’m not sure they would necessarily feel able to be totally open about their anxieties?
The aim of the trial was to treat anxiety but I think CBT could be a useful service for people newly diagnosed to talk through acceptance strategies to prevent the downward spiral into depression and anxiety ……
During the trial they found that mood changed but not anxiety and I suggested this was possibly because they were starting at the wrong point of the journey.

I decided to leave during the last break of the afternoon to avoid the rush for taxis to get back to the station. Luckily I was staying with friends overnight so didn’t have the long journey home as my head was banging, but I’d had a good time and learnt lots, which can only be a good thing.
I made some new friends from Northern Ireland too, which was lovely ……..and met lots of old and new friends – can only be a good thing😊

The best thing about the hotel room was the shower - the one thing I can't usually work - this one was magic....
The best thing about the hotel room was the shower – the one thing I can’t usually work – this one was magic….you probably can’t read it, but it has On/Off, Hot/Cold written on…….

The good and bad effect of reduced incidence of dementia

On hearing on the news recently that the figures for those with dementia are lower than expected, it brought to mind some good and bad thought. The article said that mens chances of getting dementia have plunged by 40% due to a change in their lifestyle habits whereas women’s risk remains the same. See picture for detail..

image

I’m not sure where I took this photo but it looks like the tables in Neros so may have been in the Times or the Telegragh…….
Among women there are 40 new cases per thousand per year compared to 36 in the 1990’s. Among men of the same age the rate has fallen from 42 to 25 per thousand. The most spectacular being men over 85 where rates have fallen from 72 to 38 per thousand.

Obviously any reduction is good news. However, I’m always slightly sceptical about figures. Is it because people are not being diagnosed? Is it because people who do have symptoms aren’t presenting with the symptoms as help is available on line and they know there aren’t any services? Is the stigma, still very much attached to having dementia preventing people seeking medical advice?
I hope not, I hope the figures are genuine, I hope they are a reflection of changing lifestyles.

However the good news is tinged with concern for the implications which may arise from the reduction.
Will people now be complacent?
Will services now not be thought unnecessary?
Will those with budgets to change environments now believe the urgency no longer exists?
What concerns me about lifestyle in the last 20-30 years is that we have seen such a huge increase in alcohol consumption. Many clinicians have highlighted to me the increase in numbers in hospital with alcohol related diseases who are also presenting with dementia. This ‘modern’ dementia is yet to surface in the numbers I expect so it’s important that we don’t become complacent and that GPs and healthcare staff are given the tools to recognise the symptoms.
Will we who already have dementia be forgotten and not seen as worth the effort………I really hope not…..
I found more of a similar article here in the Mail for those interested:

http://www.dailymail.co.uk/wires/pa/article-3548847/Mens-health-awareness-cut-dementia-rates.html

First meeting of Women with Dementia group in York

Yesterday was our first meeting of the Women with Dementia club organised by the wonderful Emily Abbott and alley assisted by her new admin support Lorraine Blacker.

It was another gorgeous sunny day. I caught the bus into Beverley and then had an hour to wait until my bus to York so settled into Nero’s with their free wifi for the duration😊 The flags are just starting to go up around the town as the Tour de Yorkshire starts here next Friday.
The sky was clear blue as we trundled towards Market Weighton…

image

Lorraine kindly agreed to pick me up at a bus stop just before the city centre and it all turned out perfectly.

image

Sadly a few women that were meant to be there were either not well or something else had cropped up but they’ll hopefully join us next time.

Lorraine, Emily and Elaine....
Lorraine, Emily and Elaine with the vital resources of tea…..

We started off just chatting about anything and everything and there was much laughter yet again from the start. Elaine relayed how she’d met Eddy and his wife in town yesterday and she said it was like meeting family. Elaine is the one who hadn’t been out of the house for years before joining the Minds and Voices support group and met Eddy There. Just shows the power of peer support.

Emily told us how this group came about and how it is affiliated to the DEEP network just like Minds and Voices – she reminded us how Joseph Rowntree Foundation did the study around Women and dementia last year More can be found at:

www.dementiawomen.org.uk

image

They produced the booklet of photos and words that women said at the time……….the photos are lovely, the nicest thing being you can’t tell who had dementia and who hasn’t, just the same as you can’t tell in our group.

The element of choice wasn’t present before so women just were assumed to be the carer. I wouldn’t want my daughters to care for me.

The thing that came up again and again was that the women interviewed really enjoyed spending time with other women. We all agreed and hence the birth of our group!

Ann started telling us about how she remembered when you had to pay for a GP to visit and how she remembered when the NHS came into being. The rest of us couldn’t imagine the NHS not being around.

Elaine remembered the midwife smoking a ciggie while she was giving birth to twins and the other 2 ladies remembered the same midwife in York!!😱

We all thought our babies were beautiful and Ann said her mum said in her hearing “I’m a bit disappointed in her face’ and Emily said her dad said she looked like a librarian when she was born 😳 so can’t imagine what she looked like!!

We somehow got onto the subject of bald men and how newspapers were reporting that they were being attacked by seagulls as they kept thinking they were rocks……..more raucous laughter 😂😂😂

Emily then got us focussed again and spoke of a couple of groups who would like to meet us. ‘Door 84’ – a youth club for teenagers in York – have asked us to do something with them. They have a group who would like to meet and talk to us and the discussion we’d just had about childhood games would be really good. We thought how brilliant it would be if we could get our hands on the old games we used to play like Whip and top, French skipping, cat’s cradle and Jacks. We could do a swap of games with the teenagers where we could show them the games we played and they could show us the technology they use.

‘Gingerbread’ for single parents – the one in York is quite new – said they’d like us to meet them and share our experience of bringing up children. It would be nice to mix and match the generations and support each other. So many groups are age related so it would be nice to mix the generations.

In the local Bootham Mental Health Hospital they have a sign that says ‘For the insane’…….when Elaine asked the doctor why it was still allowed to be there he said that it was to show how it used to be as people with dementia were classed as insane. . Elaine then said ‘just think, we could all be in a mental hospital – what chaos we would have caused it they put us altogether in a home!!’

After a wonderful lunch made by Lorraine, we had an amble outside for some fresh air in the sunshine and took a lovely couple of photos…….

image

We finished off by Emily bringing us back into focus and mentioning that the wonderful Helen Roberts has asked if she can be involved with us to help with speaking in public. Helen used to be my daughter Sarah’s lecturer at York University and I’ve worked with Helen, both with the students and with healthcare professionals on one of her courses. I said that Helen will probably make it such fun that we won’t even realise we’re doing it. But it’s also learning a new skill for many, which has been proved to help in keeping our brains ticking over.

In the blink of an eye, our time was up – I don’t think I’ve ever had such random notes from a meeting – most of which I can’t re produce!! Just goes to show what a laugh we had.

Ann at one point laughed:

“Laugh and the world laughs with you, cry and you cry alone”

what a nice way to end this blog……..a wonderful laugh and chatter was had by all.

Challenge on Dementia 2020: Putting Words Into Action…..

Yesterday I was in London at the above event. It was held at ‘Rooms on Regents Park’. The building looked very familiar and I had a similar picture on my iPad from a previous event so me thinks I must have been there before!

It was another wet and very dark morning – I had to catch the first train of the day at 6am 😳-so early that even the lights weren’t on in the station😱. I think it’s the first train I’ve caught where all the seats were reserved apart from a few in the rear carriage, but to be the first on was very surreal. The bonus of travelling on Hull trains to London was that at least the tea was Yorkshire tea……..😊 AND there’s free wifi all the way, so I was a happy bunny….I’d also forgotten what a ‘fast train’ was……….

I was asked to do 2 short talks, one in the morning session on ‘Why is dementia a priority’ and another in the afternoon, “Progress on improving dementia care, support and research’.

Dr Sophie Edwards did the usual housekeeping stuff and was Chair for the day, before introducing Dr Charlie Davies, Managing Director of UCL partners Academic Health Science Network opened the event by setting the scene.

Followed by me. I ended by answering the initial question of why dementia is a priority by saying:
“Something that effects so many people in so many ways must surely not be ignored. With the retirement age increasing so will the problem of supporting people to remain in work or not. The cost to the economy will continue to rise alarmingly as the ageing population increases. So to ignore would surely be foolish. Surely finding ways to support people with dementia and researching effective ways to prevent the disease in the first place would be far more cost effective that having to fund the crisis situations that will inevitably arise if we choose to ignore its existence.”

Then came Alistair Burns national director for dementia – to talk about what has been achieved so far.
One thing that stays in my mind was all the talk of doing things ‘well’ – Preventing well, diagnosing well, Supporting well, Living well and Dying well…

image

‘Well’ is the key word and I tweeted that this needs to be a consistent practice across the country which isn’t evident at the moment.

One lovely slide from Alistair was around Dementia dogs being guide dogs looking for a new career – love it…….

image

Acosia Nyanin – Head of Inspection CQC – was next to speak. Key them that came out of this talk was that quality of care is variable – “Variable “ standards seem to be a key consistent theme……

Dr Doug Brown – from Alzheimers society – spoke about the current work of the Alzheimers society. Key point of Dougs talk is implementation of good practice found through research must be given a priority. He also highlighted a study which had shown that dementia can develop 10 years or so before the onset of symptoms…….

Dr Harwood – Clinical Lead of London Dementia SCN – Consultant psychiatrist mainly in the care home sector. He spoke about the situation in London. He spoke of the variable diagnostic rates in the London Boroughs.  We shouldn’t be pushing people to have care pathway but we should at least give everyone the option – everyone is individual. His was a very good talk.

The theme of ‘variation’ seems endemic throughout the dementia world………’variable’ diagnosis rates, ‘variable’ services, ‘variable’ standards, variable waiting times for memory clinic…….

It was good to talk to people over lunch and look in more detail at the wonderful art work being done by CreativeConnection.co.uk. They were putting into pictures everything that was being spoken..

You might just see me in the middle.....
You might just see me in the middle…..

The afternoon however turned decidedly sour. I was due to open the afternoon with a talk on research involvement, however, I was forgotten ………..😔. It clearly said me on the programme…..

image

but the Chair,  must have felt that someone with dementia speaking in both the morning and afternoon was too much for anyone so decided to move straight onto Pier Kotting (who did his usual wonderful job). I wonder what the more eminent speakers would have thought to being missed out – Ooooo but of course they wouldn’t have been omitted would they……….Not even an apology from the Chair after the event….I went home sad and disappointed and felt as though I’d been party to tokenistic inclusion ……….
Being involved has a positive impact on your well being, I’ll leave it to your imagination to imagine how being forgotten makes you feel…….

 

The changing importance of ‘Time’ ….

The fear I felt when I was diagnosed began to subside when I saw that writing was my way of keeping alive and positive and hence this blog was born. My blog and Twitter opened up a whole new world, new communities that have become my friends – some very good friends. I didn’t need many friends before but now I value them all dearly. It introduced me to so many people from all walks of life and all sorts of experiences. I’m not sure if it’s the disease that’s made me more gregarious – I used to be a loner – but whatever caused the change, I’m happy that it did.

Which brings me to the next change – TIME.

image

‘Time’ has taken on a whole new meaning. I’ve also seemed to have lost the same sense of time as I once had as I so easily get distracted and ‘lose’ time.

Due to the very nature of the disease none of us know how much time we will have or how quickly the disease will progress. That’s why bureaucracy is now even more frustrating as it takes so long to bring about change.So many unnecessary hoops to clamber through……Time’ almost creates a fear inside; a fear that time will escape me and all the things that need changing will still need changing a year from now. Kate Swaffer in Australia, often speaks of the same frustration and the fact that I’m banging on about the same things as she was 6 years ago is very frustrating……

image

Some days there’s a desperate panic to get everything said or written before I forget – time is more important and I’m now a tad obsessed with cramming everything in while there’s time. Always was highly organised – but now there’s a ‘need’ to be meticulous with instructions, maps & pictures.  I have to print out emails and have everything printed and out on display that needs doing for the week ahead otherwise it doesn’t exist.

Paperwork for the week ahead out on display on the worktop
Paperwork for the week ahead out on display on the worktop

I need so much more time to get myself sorted. I get confused so easily if I try and go at normal speed

But I suppose allowing more Time and wanting others to give me more Time are simply strategies to enable me to continue happily.

Often all we need is TIME – please consider that if you have a loved one with dementia or who is simply slow at doing things. What does it matter if it takes me an hour to do something you can do in 10 minutes. Don’t be tempted to do it for me simply because it’s quicker as that is ‘disabling me’ before I’ve lost the ability to do that task. Go off and do something else for an hour while I’m taking my time to do something.

I’m sure there could be a lot more negatives if I thought about it but luckily I’ve probably forgotten them – bonus!
One thing I’ve learnt from this year – don’t worry about the niggles in life – in the grand scheme of things – what do they matter…….but TIME still plays heavily on my mind……..

"Ok Wendy, that's enough of blogging......TIME to play with me........."
“Ok Wendy, that’s enough of blogging……TIME to play with me………”

 

In defence of my writing………

In defence of my views……

To finally draw a line under all the comments that have come since I published Damian’s blog on Friday……yesterday I came to Damian’s defence, well today I finally find myself coming to my defence……..and then that will be an end to it……..for now….😊
Another lovely blogger, who happens to be a carer – and who I hasten to add, also said some very nice things about me, ended by saying about me:

“It is all too easy for someone who is still SO able in her world to forget that there are many millions of people who are beyond her level of ability……”

I’d just like to clarify that this is why I speak out as I do – because I still can – for that very reason. I am still able to speak my mind and say how it is and I do this for all those with dementia who either don’t have my confidence , but more importantly, for all those who have lost the ability to say what they think – for all those people in the late stages. I can write because that bit of my brain hasn’t broken – other bits have…..

The one good thing about all the discussion is that it has initiated discussion. One day I will be at that late stage of the disease, and I hope someone like me will be around doing exactly what I do now.