I might not smile

This is for Christmas and for everyone living with dementia

I’ve got the Kings College festival of lessons and carols on in the background.

I’ve wrapped a few presents, decanted the chilli and garlic oil into tiny old fashioned bottles with those porcelain tops that flip down on stiff wire. Like lemonade bottles used to be.

There’s tonnes of food in the house for the next week. And drink.

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And yet…

That familiar phrase…

And yet, I sit here with tears welling, just wondering, thinking…

Christmas at home when I was a child. Drinks next door. Go to bed excited. Turn the light off. Try to stay awake for the door handle rattle…

And then at five o clock jump out of bed and see the door handle pointing up from the weight on the other side. Quietly, ever so quietly, open the door and lift off the stocking, thick knitted, with an elastic garter sewn on to hold it to the door handle.

Elastic garters…long socks and shorts at school. It wasn’t pink and rosy and great…it was just school in the early sixties.

My tears are not for the past. It was not wonderful. I remember the November smog in Birmingham when I could not see more than two feet. Walking home from school four miles. Bumping into trees. School was a trial that lasted twelve years, twelve unpleasant years that moulded me and my values.

And I still get fund raising and commemoration and old boys’ dinners letters through the post. I hated it. Yet they still try to include me in their sham, prejudiced, entitlement world.

This Christmas seems more than ever before like the leaving of something. Here I am, dwelling on a past which really was not good. And yet, I will never recapture the Christmas anticipation and joy of childhood.

I am not alone. Nor are you. But we may be lonely. We may not want company, but we may miss it. We may have little past family left, or none at all. We may, like me, have siblings who don’t communicate, and might be happy, sad or dying. I really don’t know.

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But Christmas is a kaleidoscope. All those memories and feelings are squeezed together prismatically, misshapen, colourful but unrecognisable, and just…there. Like a geezer, bubbling away in sulphurous mud, belching, farting out uncontrollable feelings and memories.

It is just too much to control. The lid comes off once a year. Blows up in the air, clatters to the ground, and leaves us staring wide-eyed into our memories and our feelings.

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And it hurts.

It just hurts.

And that’s why tears come.

Don’t look, don’t feel, don’t wonder…just talk, eat, drink and be…merry?

Kill the time with booze, telly, games, presents, wrapping paper, food and more food…

That’s what we do.

But actually, Christmas on your own is eye opening, soul opening. Strip away the games and pretences, the hide and seek, the strategies to avoid thinking, and what do you have left…a void. A crevasse.

At the bottom of which are your memories of times past.

And if you have a terminal illness that will either kill you or limit your life, and gradually rot your brain or other organs, it is probably a good thing to have this time to reflect, and weep, and grieve for what you are losing.

It’s a difficult time. Because we have little hope. We know our time is limited. We know the next year will be a little more distant, isolated, removed.

So, please, don’t try to make us all happy and cheerful because, after all, it’s Christmas everyone!

Let us reflect and think and just, well, be quiet.

Happy Christmas and new year. But I might not smile.

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What matters to me?

What matters to me?

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I asked members of a DEEP group recently if they could answer this question? Or if anyone in Health care had ever asked them.

Responses were predictable. No, no one ever asked them what mattered to them?

Me neither. Never.

But nor did they understand why it would matter when they’re talking to a Dementia Nurse or their GP. It was as if they were embarrassed to talk about those tiny little things in their lives. Why would they take up a professional’s time with these little details. They’re just personal to me.

Yes and no.

We may not think any of this matters at the moment. We get pills, we get pep talks, we are told to avoid risks. What’s a care plan got to do with me, I just live. And get on with it.

But wait a moment.

How many people have been given drugs which make them feel awful? I certainly have…blood pressure meds that debilitate me for hours, and dear old donepezil, which makes me feel so bad I have to lie down all day…if I take it in the morning.

Did anyone offer me a choice about these? Well yes, to a point, but not with any discussion of how they might debilitate me. And how to get round that.

I prefer to have higher blood pressure in the day so I can carry on living as I wish, but it’s taken quite a long time to get to this. Because I and medical staff did not give any real weight or thought to what matters to me.

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Care plans, if they exist, are just bits of a screen (print) that include our diseases, medications, and medical history. In other words, it’s our doctor’s or our nurse’s record for their use. Very useful if I’m admitted as an emergency, but useless for helping me to live as I choose.

Apparently NHS data show that 85% of Patients with long term conditions have care plans.

That’s bollocks, pure and simple. They are not care plans. Just lists.

So let’s start again.

Do we have shared care plans which we have co-designed with the medical and social care staff we work with?

Nah.

What should a care plan be?

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A plan for how I want to live (and die), now and in the future.

Who is it for?

Those who look after me when I am no longer able to. And those who look after me now, when I want my life to continue as I choose.

Every health or social care worker who provides support or treatment should read it and be able to contribute to it.

And I should own it and carry it with me, or give access to it if it’s stored somewhere, virtually or on paper.

This stuff is not new. But it’s not understood and applied in practice.

Have a look at this short cartoon, one of several put up on Youtube by Helen Sanderson, about what matters to you.

And here goes with a list of some of the things that I’d put in my plan. Just the ones I can share in public, of course. I do this to make people think about the small things that matter to me, that professionals cannot know unless they ask and take time to find out.

They make the difference between living as I choose or just existing; being positive even when feeling ill, or feeling hopeless and helpless. Going to bed thinking it’s been a worthwhile day. And getting up with an inner smile.

……..

I like a pint size mug of leaf tea, without milk or sugar. Never tea bags.

I like a shower before going to bed because my feet feel less painful and I sleep better.

I like walking alone with the dog in woods or fields, just being present, with my camera, listening and looking.

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I like to sit for an hour with tea and the dog reading the Guardian on line after I’ve got up, before starting the day, with a window to look out of.

I like to cook, and I like strong tastes and spicy food.

I like to sit in the garden with a mug of tea, or beer in the evening, just listening and watching, browsing twitter and email, writing.

I like to wear crocs, sandals or, better still, no shoes.

I like espresso coffee made with an aero press.

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I like to make and eat proper, artisan pizza, not shop bought stuff.

I like to walk and garden, and can’t if I take blood pressure pills in the morning.

I like using my brain, thinking, analysing, challenging, and the stimulation of working with (most) nhs staff.

I don’t like overwhelming noise, bright lights, people I don’t know but have to talk to.

I don’t like interruptions or instructions when I’m cooking.

I like two pillows, and untucked sheets over my feet.

I like cutting the grass.

I like spending time with my children and their partners.

I like sowing seeds and growing veg and flowers and trees.

I don’t like having to talk to people when I’m out with the dog.

I don’t like the table being cleared before I finish eating. (I eat slowly.)

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I like lots of windows, and the curtains left open at night.

I like being greeted with a smile and a name when I meet Health staff who look after me.

I don’t like being called “luv” or “darling” or “petal” or “mate”. My name is George.

I like to have time to ask questions, to think things through, and to find to a conclusion, before leaving appointments.

I like to tinker in the piano from time to time.

I like to write… letters and blogs, and tweets and things.

I like to choose my company, and to talk about things I’m interested in and know about, not always what someone else says.

I don’t like listening to people with closed minds and uninformed prejudices.

I like eating kidneys and liver. And smoked bacon of course.

I like fresh brown bread, especially if I’ve made it.

……..

I could go on. But you get my drift?

These are what matter to me.

I leave medical care to medics, but I want to make the choices from their advice so I can go on living as I choose.

So always, always ask…

What matters to you?

What matters to me?

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Drawing back the veil over My Hyde

Drawing back the veil over My Hyde.

I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…

……

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I’ve got brain disease, I’m told.

My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.

You meet me at a conference or a small meeting and you probably think “really?”.

Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.

So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.

And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.

But you don’t see me at home.

I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.

When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.

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I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.

Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.

In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.

And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.

I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.

Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!

I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.

I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.

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So here comes Christmas. Lah de dah.

Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.

Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.

I’m not the person I once was, and it’s hard to accept.

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I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties. And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.

It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.

The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.

I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.

There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?

When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?

In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.

What about the memory service people? Their risk aversion is stifling.

I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!

It has happened several times. So I don’t have any real faith left there.

I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.

And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.

Because that’s what makes life worthwhile at the moment.

In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.

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A Good Year?

Time to reflect.

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What have we achieved? In Shropshire and wider afield.

There are now just over 12,000 dementia friends in Shropshire, Telford and Wrekin.

Our DAA has some 60 member organisations.

There is a new DAA in Newport, and lots of signed up supporters.

Ludlow and Oswestry are about to launch DAAs, and Whitchurch will soon have one next year. All down to a few wonderful, committed, passionate people.

Telford and Wrekin CCG has committed to rolling out the Dementia Companion model that we all co-designed two years ago, so that when people are diagnosed they are contacted and supported as much as they choose throughout their journey with dementia. The model is now working in Newport.

Shropshire CCG will be piloting this role in Ludlow and Oswestry early in 2018 for a year.

Memory service (agh, how I hate that label!) staff are now arranging sessions in some GP
Practices to meet people with cognitive impairment and diagnose the more straightforward cases locally, in places that people know.

 

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There are four peer (DEEP) groups in the northern half of Shropshire for people living with dementia to meet informally and regularly.

Diagnosis rates are up to 70%.

And yet…and yet…

How many people living with dementia actually access any meaningful support?

I’d say no more than 300 in Shropshire.

DEEP peer groups, singing for the brain (being phased out?), Dementia cafes, art and craft groups, church groups…all good things. But reaching very few.

Alzheimers Society Support workers providing advice and signposting to those who enquire.

There are 3,000 people over 65 living with dementia in the county. Another 240 under 65, for whom the diagnosis rate is an appalling 25%.

So let’s estimate that 10% of people living with dementia in Shropshire get meaningful support to enable them to continue to live as they choose within their communities. And I’m probably being generous.

Yes, all of us with a diagnosis will receive a visit a couple of times a year from “memory service” staff. We’ll be told to minimise risks, and we’ll be given a care plan that we’ve had little input into, and which we have not agreed before it’s sent to us in the post.

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When families are in distress in Telford and Wrekin they will get great support from the Admiral Nurses there. But Shropshire doesn’t commission them.

The Dementia Companion role will provide invaluable support and advice and a bit of handholding to help people remain living their normal lives in their communities, engaged, doing things that they want to do.

A diagnosis does not and must not change how we live. The brain disease will, but not the diagnosis. And to counter the negative effects of the brain disease we do need the sort of moral and social support, as well as practical help, that peer groups and dementia companions provide.

We have some wonderful NHS staff working to improve the health care that people living with Dementia receive, in hospital and out.

But there is not yet an engrained cultural and professional acceptance that dealing with Dementia is everyone’s job. That you can’t just appoint a Dementia lead and a few (excellent) HCAs and tick the box that says you’ve dealt with dementia.

It’s everyone’s job!

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Training for health care staff is paltry. It may be included in induction for new staff, but it’s less than an hour. It’s skimpy coverage of the Butterfly Scheme and John’s Campaign carer passports. Because that’s all the managers will allow time for.

A few staff do more detailed training…hmm, 1%, perhaps 2%.

There are places of excellence, where – guess what – one or two staff are so passionate they take the rest with them, usually fighting against managers rather than alongside them.

And behind all this work is a small group of people, many living with dementia, who are becoming more and more involved in, and confident in, campaigning for better support services and better health and social care.

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It’s not headline grabbing. It’s not shouting (usually).

It’s being present and talking and challenging.

It’s travelling…often without expenses…to meetings and groups to provide the voice of the people for whom services are provided…or ought to be.

Nothing about us without us present. Please.

It’s telling professionals about the reality of loving with dementia that they neither see nor feel, because they can’t. And because they don’t often ask.

It’s time that social and health care commissioners and providers fulfilled the legal, statutory and moral rights of people living with dementia…

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  • “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.
    I want to say a huge thank you to everyone who has contributed so much to raising awareness and improving the care and support that people living with dementia get. You’re unsung heroes.

And everyone else? You commissioners and providers and managers and doctors and everyone. You shopkeepers and bus drivers, councillors and everyone. You can all do something to make life better.

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So, in 2018, what will you do?