Human rights do not depend on funding, they are fundamental.

Human Rights do not depend on funding. They are fundamental.

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I am trying to get my head around what support should be provided for people living with dementia. What will help us? What we have a right to. And why this is justified.

I’ve looked at some of the guidance and pathways from NHSE and NICE. 

I’ve looked at guidance about cancer pathways too.

But I can only find documents relating to prompt diagnosis and treatment. Not post diagnosis support.

Most dementia documents, including the prime minister’s 2020 challenge, also refer to diagnosis, or at least the start of testing, within six weeks of GP referral. They steer clear of what is to be provided afterwards, other than care planning, and advice and information about keeping engaged, and obtaining benefits.

When I spoke to the GP chair of our CCG last month, he said they didn’t have any money for more dementia services. They have two pilots for dementia navigators, till next year. Evaluation pending. 

And funding to support Alzheimers Society activity locally is being cut each year.

With cancer, you get the diagnosis, you get treated, often for years, you recover, you live in remission (with the fear at the back of your mind)…although around half will die within five years.

With dementia you get a diagnosis, you may be eligible for a drug to reduce the effects for a while, and you live on, slowly (usually) declining.

So what is the difference, and why do we want more?

A person with cancer…except brain cancer…usually retains their cognitive capacity. They can manage their lives in the same way as before, though with probably changed emotions.

A person with dementia is losing their cognitive capacity. They therefore cannot manage their lives in the same way as before the disease, and they therefore require help to continue to do so.

This is the key. It isn’t that post diagnosis support is sort of nice if we can afford it… It’ll just help people who get upset at times…

Post diagnosis support is what enables plwds to continue to live their lives as they choose, to navigate the complex world around them which they are losing capacity to deal with effectively.

It will help them live their family life, find happiness, do what gives them pleasure, and get the support that makes life possible. And these are fundamental Human Rights. Not optional.

That is the bit that all these pathways leave out.

Except two, published by the government itself.

What to expect from health and social care services following diagnosis. This document uses the word “should” throughout, not “must” or “will”.

https://www.gov.uk/government/publications/after-a-diagnosis-of-dementia-what-to-expect-from-health-and-care-services

And the Prime Minister’s Challenge 2020, Roadmap to Delivery.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/507982/PM_Dementia_Annex_2_acc.pdf

Both of these pathway documents include Dementia Navigators or Advisers.

Essential people who know local systems and services and communities. Who know the people they support. Who are available for a chat, or advice, or support. Who remain with you for years. To support you when you need it. Who help you navigate systems and benefits.

There’s no mention of Admiral Nurses, although the documents do refer to specialised support.

So what is it that we need, that we have the Human Right to receive?

  • Early Diagnosis, at any age.
  • Information about LOCAL services and groups.
  • Dementia Navigators throughout our journeys.
  • Shared living planning, owned by us and our families, contributed to by all our health and social care professionals and others.
  • The services of GPs, Occupational Therapists, Physiotherapists, Bereavement Counsellors, and others, when we need them, not when it’s too late.
  • The social care and health care staff who work with us must all be trained to level 2 of the training standards 

http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework

  • Admiral Nurses, as and when we and our families need them to avoid crises.
  • Personal health and care budgets to enable us to live as we choose.
  • End of Life planning, starting soon after diagnosis. 
  • And of course support to remain living where and how we choose (social care, assistive technologies)

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I think this would be a good system, though there is a lot of detail beneath each element, and delivery would vary according to local geography and demographics.

There are a million people living with dementia, and the same again of family carers. This is not a tiny little minority group. Though that would not alter things one jot. Human Rights are not just for the many.

There must be no choice for whether local commissioners provide this model. It must be consistently provided everywhere. Human Rights are not optional. They apply to every individual, always.

Lack of funds is not a defence. Human Rights do not depend upon funding. They are fundamental. In actual fact, evidence shows that the elements in this model would save the country more than they cost.

The law needs to be changed so that CCGs cannot escape their responsibilities to implement this model. NHSE and Government must be able to require by law that this model be implemented everywhere.

I call for action across the countries of the UK to demand that parliament change the law to insist that this model of support for people affected by dementia is implemented throughout and in every corner of our countries.

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……..

The Dementia Statements

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
  • We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • We have the right to an early and accurate diagnosis, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

Implosion

Why do I write blogs about dementia?

Why do I want or choose to tell people what it’s like? The ups and downs.

Is it just navel gazing?

And, for that matter, is what I write about just about dementia, or is it all the rest of my long term disease conditions?

There are two guys I frequently meet when walking Lupin. S thinks he may have dementia since we have been talking about it recently. One GP (you know, that one) told him of course not because he passed the simple test. But he knows better…something is wrong. So I told him to try a different GP.

B, on the other hand, doesn’t see my dementia therefore thinks I cannot have it. I can talk, after all, lucidly, about dementia! And Brexit. He also blames immigrants and muslims for everything! That’s a bit trying so I try to avoid him.

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Now, the point is…

I write about living with my disease because I want to help others understand what it’s like. 

When people I meet say ‘oh yes, that happens to me too’ I think I may have helped them forward. 

When someone says ‘you can’t have dementia if you can have a conversation like this’, I think, well ‘you don’t look stupid either!’

So I write for everyone to improve their understanding.

….

I have just been away for a few days to attend a wedding. We booked a house for us and our grown up children.

It was down in lovely Monmouthshire, near Abergavenny, where I spent many school holidays walking up hills, having camp fires, slashing at bracken and climbing trees. I loved that area, and still do.

Hence, I was really looking forward to a week there.

We arrive and the house is fine, on the side of a hill of old oaks and chestnuts.

The others arrive. And all is fun and welcoming.

Then I find I have to go outside on my own for a while, in the evening. I cannot sit inside and listen to their talking. I feel I cannot get into the conversation even. I feel I am being excluded because I cannot keep up.

So I get a bit annoyed and withdraw. 

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Next day I begin to feel a bit confused in the new house. Not sure where things are. Up a stair, down a stair, round a corner, squeeze past a chair…frightful noise of chairs scarping on the tiled kitchen floor. Send me mad.

And when I show that it makes me mad I get told not to be silly and annoying.

So I withdraw outside again. And fume. Because they DON’T UNDERSTAND.

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That evening I cook a meal. It’s my way of keeping out of the group conversations and doing what I enjoy, with a drink.

Well, where are the pans? The knives? The plates? How do you use the electric cooker? There isn’t enough prep space…etc, etc.

And I get annoyed. Because I cannot just get on and cook.

Then the roasting tin doesn’t fit the oven. Wonderful. 

And I burn my self twice using oven gloves (supplied) that are worn thin.

So I start swearing and cursing.

And throwing things around.

And drink.

And get steaming bloody angry and noisy.

So everyone else gets upset and annoyed with me. And they try to ignore me.

We eat, and they go in the other room. 

I sit and drink, listen to some music, read my ipad…feel bloody miserable…

And I storm off to bed, slamming the door.

Great day.

Next day is the wedding. And I’m not in the mood for it.

I feel really exhausted after not sleeping well. And bad dreams. And unfriendly looks from my family after the night before.

I really don’t want to go to this wedding. They know that. I know that. But I have got to, I am told. Just behave and put up with it, they say.

I try. I do try. But I’m feeling tired.

And there are 130 people and I only know 10. And have very little to say to more than five. And I’m trussed up in a suit and tie.

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We stand around afterwards. We exchange pleasantries. I stand on the edge and smile at people.

Then off to the party in a marquee. Lovely setting, truly.

But…more smiling and pleasantries, drowned by loud music. So I withdraw outside.

And sit and drink and watch the world go by. But I know I’m being unsociable, and probably rude to the guests and hosts. So I feel guilty.

And oh so tired.

Then the dreaded part. Sitting opposite people I vaguely know but with whom I have almost nothing in common. And one is a priest! (Moderate language!) And I can’t hear what anyone is saying.

Christ. This is a torture. I turn to another guest I know a little, and ask an introductory question that I know will lead him on for hours. And yes, it does. I nod and grunt and he whines on.

The world is full of people who know everything and cannot stop themselves telling you. And I’m too polite to say stuff off.

By 9.00 I am finished. My head is bursting. I almost fall over on the uneven, slightly dazzly matting. I have to escape. So I go for a walk through their garden. Peace at last.

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Luckily I am not the only one who wants to leave early so I’m away by 10.00.

Of course, then there’s the sitting outside with a drink, chat with son, and feeling angry that I have just been subjected to an ordeal I could not stand, and did not want.

Next day I am utterly exhausted. All my body has stopped. My blood pressure drops. I feel ill. And I am still angry. That I cannot go for a walk. That I wasted yesterday. That I cannot do what I used to do. That my body is broken.

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And for two more days I am utterly out of it. 

My mind is torn. I am imploded.

All I want is to sit in my real home and watch the clouds and the butterflies drift by. Sleep in my own bed. Know where everything is. 

Take life at my own speed and just recover.

So we come home early.

….

If you are still reading this let’s look at the lessons.

Remember, dementia results from brain disease. Physical, organic disease. It’s not a choice!

A person with dementia is not just the person you see when you meet them now and then.

A person with dementia can and does get freaked out very easily, sometimes quite unexpectedly.

A person with dementia can get very tired quite suddenly and can take days to recover.

Most people with brain disease have other diseases too, which make everything worse.

Changes of surroundings are difficult to adapt to.

Noise and distractions can incapacitate you.

Dementia can lead to reduced capacity to control and moderate language and actions.

Dementia can allow hidden personality traits to emerge that may not be pleasant.

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….

My philosophy, if I could only follow it…

Stop doing what you SHOULD do, what is EXPECTED of you.

Do what suits you, and what you enjoy doing.

Avoid what upsets you.

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Dear Mr Bevan,

Dear Mr Bevan,

Please forgive my formality, but this is not an entirely complimentary letter.

How do things look down here from up there?

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Are you pleased with what you started?

I know, we all owe you a huge debt of gratitude for establishing the National Health Service after the war. It’s a fine thing. Universal healthcare. Free.

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Fabulous.

There’s just one little problem. You made a catastrophic mistake when you allowed GPs to remain as independent contractors. Yet also within the NHS.

Independent but effectively employed. Self employed but paid directly by the NHS.

I know why you did it…they refused to play ball with you.

And guess what…they still refuse to play ball!

There is a thing about cake and eating at the moment, on an entirely different subject. Was it Mr Gove or Mr Johnson who said we could have both?

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Well GPs are the masters of this game. 

Mr Bevan, you cannot have known that a little known man called Lansley would compound your mistake.  But he did.

Mr Lansley came along eight years ago and decided it would be good to give GPs even more power. He put them in charge of deciding what health care we would get.

He decided that GPs in different parts of the country would look at their populations and make good evidence based decisions to provide the health care that they thought we needed.

Mr Lansley, you forgot one thing. You gave the fox the chickens. You gave the fox the keys to their own larder.

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Unfortunately, you and your successors and club members also decided to give your GPs too little money, so they were bound to fail before they started. But they still had the keys to that larder.

Back to you, Mr Bevan. 

What do you think now?

Did you see the meeting I was in last week when a GP CCG chair said that if GPs were not paid a fee to do something they did not need to and would put it to the bottom of their pile?

Did you hear the same GP say that GPs don’t have time to discuss care and living planning with their patients? Someone else has to do it.

And then did you wonder why that GP and his clubmates do not commission someone to do this care and living planning?

The thing is, Mr Bevan, we rely on our GPs for our healthcare. They, however, seem to play a game of rules, whereby if they don’t get a fee they don’t do it.

It doesn’t seem to matter that their Royal College club has given them the guidance on how to do this person centred care planning. And that it would save them time (avoided consultations) and their CCG money (avoided hospital admissions).

It would require healthcare navigators of some sort. And they cost money. And, oh dear, they don’t have any money. (Except their salaries and profit shares).

We all know that a business has to run as a business. If you lose money eventually you go out of business.

Equally, a business has customers who can buy goods and services elsewhere if they are not happy with you. In which case you either improve your customer service, or take a pay cut to keep the business going.

Ah…oops…pay cut? 

Customer choice?

GPs?

Nah.

So its not really a business at all?

GPs are paid to provide care for their patients. But they choose what they will provide. And when.

And they only provide what they are paid a fee to provide.

And customers cannot usually realistically move to a different GP.

Hmm. We seem to have a problem.

Not only do GPs have a monopoly over primary healthcare for us.

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They also have the bank account to pay for community and secondary healthcare. 

I grant that CCGs do not commission primary care, ie their own GP services. 

But they do decide many of the services we get. And when I hear one of them complaining of lack of time and lack of fees I get a little hot.

GPs could pay for a model of providing their service that reduced the need for face to face consultations by over half. They could get their lives back. It is proven. It’s good for GPs and good for patients.

We could get same day appointments easily.

It’s called “Ask my GP”. And it’s here:

https://askmygp.uk/patients/

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But it costs some money!

Perhaps we patients should crowd source the cost!

Because sure as hell most GPs round here will not invest in it.

So, Mr Bevan, perhaps you would be good enough to return for a year or two and sort this out. 

Bless!

What do we want? We want ACTION!

.This week I and fellow DEEP members in Shrewsbury and Market Drayton are sitting down with several Board members from Shropshire CCG. We are going to tell them our stories.

I have waited two and a half months for this day, since I wrote letters to MPs and CCG and Council members during Dementia Action Week. 

Mind you, the CCG has still not replied to the points in my letter to local MPs which the MPs asked them to do. And they have been reminded.

A little bit of me expects the meeting to be cancelled at the last minute, or for only one CCG person to attend. But…we will see.

What will we say?

That’s up to individuals. But knowing them as I do they will not hold back.

My belief is that there should be consistent services and support across the whole UK. It should not be for CCGs and councils to pick and choose, to decided they cannot afford this or that, or that something highly valued elsewhere would not be wanted in their own patch.

And the government has very helpfully provided us all with a model that they believe “should” be provided.

It’s here. 

https://www.gov.uk/government/publications/after-a-diagnosis-of-dementia-what-to-expect-from-health-and-care-services/after-diagnosis-of-dementia-what-to-expect-from-health-and-care-services

Here are some screenshots.

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And here is the third of the Rights based statements published last year.

“We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.”

https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/dementia-statements-and-rights

So…why can’t we force CCGs and equivalent bodies to provide this model? 

Jeremy Stevens told me three years ago that the NHS did not have the legal power to force a CCG to do anything. And of course that is largely down to Mr Andrew Lansley in 2011, setting up CCGs as independent bodies, responsible for buying the health care their population needed and wanted.

And if it’s evidence based you would not think there could be much reason to provide significantly different healthcare for people living with dementia in one county or another. 

Dementia is dementia.

The mode of delivery will vary across geography and levels of urbanisation, but dementia will not. 

If it is evidence based and proven to be effective and needed, it should be provided.

How, then, do we move forward? 

How do we force the CCGs in the current model to adopt the same model everywhere?

Probably by changing the law.

If NHS is hiding behind the law, change it.

If the law is preventing NHSE from imposing evidence based health care, change the law.

After all, if a CCG chose not to provide evidence based care for cancer or COPD patients, or heart disease, there would be uproar, and the NHSI body would be on them in a flash.

But this is dementia. 

And organic physical disease of the brain.

Its not a mental health condition, though I am not implying that it is more or less important than mental health.

Dementia is just, well, unseen. It is incurable. We don’t want to talk about it. We’re frightened of it.

So it can be ignored. And people living with dementia can just hideaway and dissolve into meaninglessness.

And the costs of earlier than necessary care and unnecessary and long hospital admissions continue to mount. 

Which could be avoided several times over. By investing in a standard, evidence based model.

We need to put pressure on members of parliament to get the law changed. If they get deluged by letters from constituents who demand replies and continue to write and lobby, they will get the message.

Bless them, MPs probably have no idea what health care is provided for PLWDs, so we need to tell them.

So that is what the 3 Nations Dementia Working Group will be doing in the Autumn. And we will be asking for your help. 

We need hundred of thousands of you to bombard your MPs. 

We have to tell our stories time and again, both as people living with dementia and as care providers.

So watch out in the Autumn. We will make noise and we will get change.

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In the meantime join the 3 Nations Dementia Working Group. We haven’t yet got our own website, but this link will take you to our place on the Alzheimer’s Society website.

https://www.alzheimers.org.uk/get-involved/engagement-participation/three-nations-dementia-working-group

Waving or drowning?

I feel overwhelmed. Overwhelmed. Swamped. 

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Today, there is just too much in my head. Too much incoming noise. Too much to process and sieve. Too much out there.

Yesterday was the same. And Saturday.

I hear a short radio report from the wonderful Lise Ducette about life and death in war torn Yemen.

I listen to politicians lying, manoeuvring, double speaking, about Brexit. (It’s about them really.)

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I look at Facebook, and tap on the messages that have come through to me. 

I find that my news page and my email are swamped with people reporting what they’ve done, announcements, reports, exhortations, links to this and that…advertisements…

I am imploding and exploding…I just don’t know where to turn, how to put all this stuff in an order that makes sense, and which bits to remove and ignore. My head is full and I can’t empty it.

I can do what I do do. I can do what I choose to do.

I can do what I can control.

I still have a good analytical brain. I can still find words when I’m prepared and on the right page.

I can travel happily to meetings and events. Be away from home for a day or two. Enjoy independence.

But, like after the Birmingham DEEP event recently, I cannot go on absorbing everything else.

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What I do is not generally draining. On the contrary, it is energising, with brief time lapses to recover between periods of activity.

But this constant bombardment that I have allowed in to my head needs to stop. 

Part of me wants to know everything that’s going on. Part wants just to ignore everything outside my immediate sphere of influence and activity.

Part of me is frightened of losing track, losing touch, and not being able to catch back up.

I know I’m not alone in this state of mind. Some people living with dementia get swamped during discussions, when ideas are batted back and forth, often too fast. I don’t usually.

I get swamped by a world I want to control but cannot. A world that I am at times ashamed of. Increasingly so. 

I am swamped by the constant barrage of emails, facebook posts, unwanted phone calls…that I did not knowingly invite into my life.

I’m not giving things up and withdrawing. Just taking back control. Stopping people getting inside my head when I don’t want them there.

So I am going to unfriend some people. I’m going to have another go at stopping repeat unwanted emails.

I’m going to take back control, so I can cope.

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I’m going to get my head back above water.

And swim gently at my own speed wherever I choose.

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Honesty and, um, niceness

So it’s cool again now. 10.00 in the evening. I’m sitting in the garden at home. The hens are making a row for some reason…hope it’s not a fox moithering. (Shropshire word). Otherwise there’s not a sound.

I’ve spent the best part of two days in Birmingham at a DEEP meet up for Midlands groups’ members. At the very relaxed Woodbrooke Hall, a Quaker Centre. 

What did we do?

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Well about 30 of us shared what we do in our groups to support each other, have fun, and campaign for change. We talked about a new website for DEEP. And about what a newsletter should contain. And, which was really important, how we should work as an organisation or network to address shared issues and campaigning. 

Oh there are such lovely people in the world. Yes, I did say that. Me, a chartered accountant trained to sniff out lies and to distrust what I’m told. Taken me forty years to shake that off!

Well not completely, to be honest. I do distrust what people say unless I sense total honesty and, um, niceness.

But I have made such lovely friends. People I call family. I have two surrogate sisters now, Dory and Wendy. We just click when we meet. They make me want to laugh and cry, relax and sleep happily. (Not together.)

And the two Arachnoids? Rachael and Rachel, such lovely people with principles and values I admire and love to work with. They make us feel valued, important, alive.

So, while there were, and always will be, sadder parts of these days, it has been uplifting. What I cannot quite cope with is the whole day or more of hearing about how awful life can be for people living with dementia. It’s like having a nail knocked into my head, blow by blow, during the day. Reminding me of what might lie in store. 

Away from these meetings it’s easier to ignore IT. The DISEASE. To just do what I do, and not to think about the bad aspects of dementia and the future.

It’s unfair. And I get disturbed by unfairness. We don’t get the support and care we need. It’s different everywhere too. Why the hell isn’t there a standard, legally enforceable model of care across the whole of the UK for people living with dementia and their caregivers? It shouldn’t be optional, post coded! We have a right to equity of care and treatment.

There were some lovely, wonderful poems read out by people during the day. You are so good. Serious poems, silly poems, sad poems. You know who you are. Keep writing for us all, please.

It’s now time to take stock, absorb it all, sit back and breathe in slowly and deeply. And not think for a day or two. 

We need to just be. Between our valiant and brave work to influence change, we need to just…be. 

Remember what we enjoy. Read. Listen. Write. And re-energise till next time. Till our next meeting or blog, or tweet…

Thank you arachnoid twins. From my heart. Thank you.

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My companion is beginning to bite

So here’s one about living with my brain disease, aka dementia.

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I’ve noticed changes recently. Not huge, but noticeable.

And I’ve also caught myself thinking that before too long I may be more significantly affected.

Till now I have just taken it on the chin. It’s just another disease or illness to add to my growing list. I’ve got on with living and doing what I do, not hugely affected by IT. 

IT has been my companion rather than my enemy. IT has brought me new friends and fresh ways of thinking about life. While I do have a disability I have not felt disabled.

But things are changing. 

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My balance is deteriorating. When I close my eyes standing I quickly wobble. Whatever I do if I don’t touch something to give me a reference point I wobble and get close to falling. Might be my elbow against the shower unit. That’s enough. 

I am more clumsy. This weekend we had some people staying. I knocked over a glass of wine by not lifting my hand enough away from it, and I often come very close to knocking cups and jugs on the floor. I’m just less good at judging distances and making quick calculations to avoid things.

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Uneven floors and patterned carpets are suddenly a real problem for my balance. I cannot calculate quickly enough to make adjustments before I put my next foot down.

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Carpet patterns which I used to cope with leave my eyes swimming and fuzzed. Patches of shade on floors that I don’t know well can also cause just a stumble as I walk. 

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My articulate use of language is still intact, it’s my physical movement that is most affected.

But my hearing or decoding of sounds is worse. I am forever having to ask for a repeat, often several times. And I’ve booked myself a hearing re-test so I can get my hearing aids adjusted if necessary.

I was using a shower over a bath in a premier inn last week. Its the first time I really felt unsafe. No grab handle. Narrow bath. Just a curtain between me and the floor outside. I am going to ask for a disability friendly room in future, with a walk in shower.

So the reality of living with dementia is starting to require a few changes. A few alterations. Thinking more about what I do as I do it. Less autopilot. More manual flying.

My companion is beginning to bite.

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I’ll look the other way

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The NHS is 70 this year. Hurrah.

The NHS is starved of funding. Pooh.

We must give the nhs more funding this year to show we value it.

(We have starved the nhs for seven years.)

Cancer survival rates in the UK are below those in Europe.

Therefore, we must put more money into cancer diagnosis and treatment.

Let’s double cancer spending from £7.5bn to £15bn.

Ahem.

What is the biggest cause of death now?

Dementia.

More people die with or from dementia now than any other disease in the UK.

So why don’t we give dementia more funding?

For research. For post diagnosis support. For admiral nurses everywhere. For dementia navigators everywhere. For universal training for all NHS and care staff.

Oh no, I forgot, it’s that invisible illness that everyone is frightened of and would prefer to ignore and forget.

It’s dementia, and there’s no cure.

It’s dementia, that disease that makes people into silent, staring, ghosts.

No, why would we want to spend more on that?

Ahem, again.

850,000 people with brain disease.

Another million family carers.

Research break throughs on the horizon.

People living with dementia frightened to leave their homes in case they get lost or cant remember why or fall.

Family carers in crisis unable to get support and respite. At their wits’ end. Hell on earth.

Ahem

We have poor cancer outcomes. We don’t meet treatment targets. That’s what the public wants. That’s what we’ll give them. 

Oops…I mean that’s what their taxes will give them.

Dementia, MS, Parkinsons…weeelll…those people will die whatever we do. There’s no cure so…whats the point?

And by the next election, if we last till 2022, which I won’t but someone might, we can sing a great song of having given a hundred thousand people an extra couple of (treatment ridden) years of living.

Bring me the sick, the scared, the broken and the dying, and I’ll…

Look the other way.

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Polly, you’re wrong; see the person not the dementia

Polly Toynbee has rcently written two pieces in The Guardian about assistied dying and dementia. In May she wrote in relation to Katherine Whitehorn, a famous former columnist with The Guardian.

in March Toynbee also wrote about assisted dying and the right to choose, with considerable comment on dementia.

Here I have quoted selected paragraphs from the two pieces and added my observations on what she wrote.

Frankly, I am appalled at the attjtudes that a respected commentator has displayed, and the way she reinfoces the myth and stigma around dementia. So here goes…

….

May article

‘Katharine [Whitehorn] is now 90, living in a care home, suffering from Alzheimer’s, with little understanding left, no knowledge of where she is or why. She often doesn’t recognise people, can no longer read and curiously sometimes talks in French, not a language she knew particularly well: she will never read or understand this article. In other words, she is not herself. 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.’

No, she is still the same person. And we must engage with her as a living, real, person. Yes she has advanced brain disease which has hugely reduced her capacity to react to her surroundings and to make decisions, find words, but she is not living dead. 

‘But the greatest horror of all is Katharine Whitehorn’s fate, not dying, yet dead to all that makes life worth living.’

This is a patronising view of other people’s lives. Of course its horrid, of course she cannot enjoy life as she used to. But she is still there, inside, a kernel in a nutshell which we find it impossible to see through.

All people are different and find different things that make their lives worthwhile. And this changes over one’s life. As you become incapacitated by diseases you change, you enjoy what you can still enjoy, and imagine back the memories of things and events you loved doing when younger.

What people with healthy brains cannot understand, is how to get into the more and more hidden world of the person with dementia. And you cannot necessarily see when the person is happy or not. You have to spend time with them, understand tiny changes in behaviour.

‘Her sons say without doubt that if the real Katharine could see herself now she would be horrified, never having wanted to end up as she is. Indeed, most people find the prospect of this ending a negation of self, denial of a life’s work and character, a mortifying indignity no one should suffer. Who wants to leave family and friends with a final memory of themselves as a vegetable, a distortion, an alien being?’

This is horrible nonsense, and Toynbee is perpetuating the myth. Disease, sickness, growing old…these do not negate a life’s work. They may make “you” think what was the point, but that’s “your” problem and perception. 

Vegetable? Distortion? Alien? These words are destructive, judgemental, and dismissive of a person as a human being. Again, they perpetuate the myth and stigma.

We go through the seven ages of life. Each is no more worthwhile or valid than another. Brain disease, cancer, COPD, heart failure…they are all diseases that reduce us and kill us. But they do not take away our humanity, unless those around us take it away.

….

Having said all this, I believe that assisted dying should indeed be available. But how can this be done if you have lost capacity? The living will or advance planning document should be used and followed.

……

March article

‘Who doesn’t live in dread of losing their mind before their body gives out? The prospect of joining the swelling ranks of those with dementia who are warehoused in miserable nursing homes appals most people. So does the thought of being an intolerable burden to their family. But campaigners scrupulously avoid talking about the wider social landscape, the rocketing numbers of those with dementia outliving their brains at vast personal and social cost.’

So…intolerable burden…warehoused…losing your mind before your body…vast personal and social cost…Toynbee is just perpetuating the myth and stigma. ‘Kill them to put them out of their misery and to save us loads of money.’ Yes, we don’t want to be a burden, but we are people. Improve the care, change attitudes…so we can and do look after each other.

Cancer, copd, coronary disease, diabetes…all cost huge amounts to treat and to provide care as people move towards dying. We don’t say that is a waste, or an intolerable cost, or a burden. What makes brain disease different? It’s the fear that the media perpetuates, of dementia. Demented. Mad. Idiot. It’s still there, if you believe Toynbee.

‘Dementia is now the leading cause of death, the first time it has caused more deaths than heart disease. That stark fact should frighten us all, as the worst possible death is now the most likely.’

Why is this the worst possible death? This is nonsense, hysterical nonsense. Death from cancer is horrid, but it’s life. The journey towards death from copd is incredibly debilitating and crippling, but it’s life. Nowadays death from long term disease is or should be controlled, pain free, calm. Regardless of which disease(s) gets you.

The trouble is that we do not talk about dying…we fear it…we fear pain…we fear what we don’t understand. 

‘Hard truths will not be faced. How do we pay for the massive increase in care for those with dementia? To do it decently is phenomenally expensive. To do it badly is brutish cruelty. What priority should we give their care over, say, improving the retreating life chances of children? No one is meant to mention these tough choices in the same breath as the right to die, but of course they are closely connected.

If, like me, you have watched a beloved parent die in needless pain, longing for an end the doctors denied her, then you know this is a personal right everyone deserves. Evidence from other countries shows that even if people don’t use that right, their fears are put to rest knowing that, if terminal pain becomes unbearable, the choice is there. Denying that choice is sadistic. But beyond terminal illness, the fear of dying of dementia is terrible too, and a living will should allow us to end our lives to avoid that.’

So Toynbee claims authority because she watched a parent die in pain. That is not logical or justified. Why was that pain not controlled? Death is never going to be pleasant for those who watch and who lose loved ones. But that doesn’t mean we should kill people so we don’t have to feel pain and upset as they die. 

Nor does cost justify killing people. That’s pretty much nazism.

A living will, power of attorney…these are essential. People should have the choice of treatment or not, and these choices should be respected by doctors and lawyers. That may need a change in the law.

But when Toynbee speaks to 20,000+ readers about fear and dread and becoming a vegetable, a distortion, alien…that demonstrates her own lack of understanding, empathy and willingness to “see the person, not the dementia”.

Who on earth are you? (and other difficulties)

It is, of course, the disease underlying my dementia, but I am finding I cannot recognise people whom I have recently met. It’s happened twice in the last week. Both are people who were with me and with whom I spoke at meetings ten days earlier.

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Of course, I just admit I don’t know who they are and ask them to tell me. But it is developing into a habit!

Why am I telling you this?

Because I think there should be an awareness of this as a symptom, and that you may need to remind me and others like me who you are. If I look blank and you are expecting recognition, just quickly tell me your name and where we last met. 

I’ll be working through my back catalogue, paddling furiously under the surface, so my blankness is just me processing data, trying to find a match. Help me out.

….

I was at a meeting this morning about a great neighbourhood wellbeing hubs project in Telford. 25 people sitting in a circle, all speaking quietly in what seemed to be a sound absorbing room. And when introducing themselves there was a sort of reluctant mumbling which meant I couldn’t hear most of them. Yes, I have impaired hearing, or processing, or both, but let’s all speak up a bit. And give me time to work out the words that have just been quickly mumbled…preferably “spoken”. Clearly.

Dementia friendly? Nope, fraid not.

We were planning a neighbourhood event in the summer. Lots of small stalls, activity rooms, loud music…I pointed out that loud music would not work for those living with dementia. Ah. Yes. Agreed. Well we could organise a quiet room. 

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So plwds will be shepherded away on their own? I do hope not. They should be able to take part in activities, art things, cakes, watch and listen and talk. But if their sensory processing is bombarded with loud music they will not be able to. 

We do have a long way to go, don’t we! These good people want to be really inclusive of seldom heard groups, people living with disabilities, and those who do not feel able to access conventional support services. Which includes people living with dementia!

Please make it easier, not harder, for people living with dementia to remain engaged in their communities. Fun events don’t have to be loud!

….

The other thing to say is that I had an eye opening weekend doing DIY with my son. We work well together, him taking the lead, me being the old hand who anticipates what is needed before he has to ask. 

But I noticed several times that he thought up some simple solutions to little problems that I just could not imagine on my own. Like fitting a cut hole in a board for a plug over that plug without taking the plug face off. Dead easy! But I just didn’t see it. Twist the plug face.

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But, like failing to find a simple word answer in the quick crossword, these solutions just doesn’t occur sometimes.

It feels like some new elements of my brain are beginning to fail. I can’t recognise people I met last week. I can’t imagine a simple practical solution to a task.

I don’t actually feel any different at all. But I’m suddenly aware of a failing that demonstrates disease progression.

….

So please, just remember the simple stuff. Remember, if we don’t react as you expect it’s because we are thinking like mad for an explanation of what is in front of us or what we are hearing.

Speak clearly and loud enough for us to hear and understand.

And can that blasted, blasting music!

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