A speech to General Practitioners

There are around 5,000 people in Shropshire living with dementia, of whom about 3,500 have been diagnosed. Some 2,000 live in care or nursing homes.

And there are 240 living with young onset dementia, of whom about 50 have been diagnosed.

I’ve estimated that around 10% of the 3,000 in the community ever access support from groups like diamond drop ins, or dementia cafes. Another handful meet in peer support groups.

So what support do I and those like me have? And what do we want?

We have occasional meetings with staff from the memory service. Pretty much when they choose, not me. I can contact them if I want.

I meet my GP now and then, but he’s no specialist, and it takes three weeks to get an appointment, so any immediate but not acute needs tend to fade away by the time I get there. And there’s no time for a proper talk.

I can meet a support worker from Alzheimers Society, but there’s only one for all the northern half of Shropshire. That’s going to be about 1200+ people to each staff. And they’re not promoted by general practice or the memory service.

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There are peer groups, self organised, in Oswestry, Shrewsbury, and Market Drayton, with no funding, and supporting about 25 people. I’m developing a number of Deep groups, like the one I started in Shrewsbury, but without support and promotion by general practice it’s very difficult for people to know about these. I started one in Church Stretton, but it wasn’t promoted so only one person came. I’ll try again in September.

People living with dementia lose their confidence to go out, to continue to do what they enjoy, and what keeps them active.

We don’t want activities for just people living with dementia. We want to be part of our community. In walking groups, at the pub, singing, bowling, shopping, painting, flower arranging, gardening, travelling, chatting. Alongside everyone else.

Where do we get information? How many people can use, or even know about, the community groups index maintained by Shropshire Council?

The DAA started the Shropshire Dementia Roadmap, and Shropshire Partners in Care paid for it for the first year. But we couldn’t get any support from the CCG to help maintain it or pay the fee, so we’ve had to drop it. It would have provided a huge source of national and local information for general practice and everyone else to use to support people living with dementia.

How do we find out about assistive technologies that help us maintain independent living?

How do meet our peers, and people at the same stage as us (note, stage not age) to chat, share experiences, and help each other.

And you may ask…do I have a shared living plan? No. I have a piece of paper that my memory service sends me after my meetings, which states what the nurse said and what she thinks I ought to do, like don’t take risks , don’t do too much…

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Do I have a plan I discuss with my GP? No. Never.

So what happened to that? We need to sit down with someone and talk about what makes life worth living, how to be resilient, how to be active, and how to get medication right!

People live with dementia for many years. It is now the leading cause of death. 25% of all hospital inpatients live with dementia and spend three times as long in hospital as others. Inpatients living with dementia often never return home again after discharge, because they are disabled by hospital stays, risk assessments, and lack of support in the community to return home.

Last year Healthwatch Shropshire led a project to co-design a new model of support and care for people living with dementia, and their carers, in Shropshire and Telford. It was funded by the Public Health department at the council.

About twenty people were involved, including carers, people living with dementia, Shropshire and Telford Councils, both CCGs, and SATH, and of course Healthwatch.

Five groups met to evolve a model across five strands…preventing well, diagnosing well, living well, supporting well, and dying well.

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A feature of this model is the use of Dementia Companions to provide support, information, sign posting, assistance and advocacy for people living with dementia and their family carers, from diagnosis to…death.

This model is being introduced in Telford this year, with a pilot in Newport, and wider roll out later.

We really need Shropshire to invest the modest sums required to make this work here too, as there is very little support at the moment. So we really also need you to lobby your member organisation, the CCG, to invest in it.

On another note, I chair the Shropshire and Telford and Wrekin Dementia Action Alliance, or DAA. This is a coalition of around fifty member organisations and businesses across the area, all signed up to work to become more dementia friendly. Our members also offer numerous dementia friends awareness sessions, and we have around 12,000 dementia friends in Shropshire now.

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We have two GP practices signed up as members, and we would really like more to do so. And Care homes as well. Sign up is quite simple, and requires a few commitments to usually inexpensive changes. Like staff training, having a staff dementia champion, improving signage in your buildings, and perhaps lighting, and changing patterned flooring.

These small changes make huge differences for people whose brains are not processing visual and auditory information very well, or who may need a little more time and explanation of things.

 

Walking the (black) dog

Of course, you all know, Lupin is not black.

Lupin is the most luxurious chestnut light brown you can imagine.

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But right beside her is the black dog. The one that lopes along, mostly hidden in Lupin’s shadow, the one that leaps out now and then, without warning.

 

You’d think it might have got tired of dogging my footsteps by now.

You’d think I might have learned to shut it away, lock it up, kick it up the arse.

But no, ever so quietly, it lopes along.

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And waits.

I was at the Alzheimers Show in London two weeks ago. A medical expert gave a talk about dementia. And the bit that really struck me, and stuck with me, was the fact that dementia (brain disease) causes an imbalance of chemicals in the brain.

A high proportion of people living with dementia also live with depression. They don’t have enough acetylcholine in their brains. Or seratonin. Or something.

Well, I’m one of them. If I get my depression meds wrong I am a mess. And I do. And I am.

And then I get the old black dog leaping out. In my face. In my head.

And everything annoys me. And everyone annoys me.

Today I went shopping in the local little town supermarket.

Well first, there were loads of cars on our narrow overgrown lane, half of whom could not reverse. Once is fine. Twice is painful. Thrice is a bashing.

Then the supermarket was busy and bustling. People chatting, kids, well, being kids. And the checkout boy holding a conversation with the next one up, about some idiotic family argument or something.

Oh my God. It was just overpowering. I felt like I my head was encased in a pudding basin of noise and interference.

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(Without the syrup sponge or spotted dick to enjoy.)

Yesterday my wife took me for a surprise to Manchester, to the Halle Orchestra. It was a one hour concert of loud, lively, orchestral and choral works. And it was fabulous.

But all through the journeys to and from Manchester I could not hear what Jane was saying, and needed repetition and clarification every time.

Guess what? When I went to bed I found that I had not turned my hearing aids on.

F..k, f..k, f..k.

How one earth could I forget that?

I hope the black dog will have hidden back in the shadows tomorrow.

Because I hate shouting at the brown one.

I think we should all be very aware of the depression that overtakes many people living with dementia.

If you’ve got a chemical imbalance you need meds to correct it. Or you drive yourself mad. Or worse.

It’s not bad to be on anti-depressants if you need them to function properly.

It’s not something to feel guilty about.

Any more than taking donepezil, or any other medication, is intrinsically wrong. No, it’s right.

There are people who will read this and think (and possibly write) that I should use alternative remedies, relaxation techniques, faith…

Well sorry folks…give me the pills. I haven’t got time to try things out which have no basis in evidence.

So I’ll continue to walk Lupin and stay on the sunny side as long as I can.

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And hope the black one stays hidden away, in the shadows.

Oh my gladioli

As the song goes, it’s nine o clock on a Friday night…play me a song, you’re the piano man…

And it’s time to write a blog.

And we’re in for a very hot weekend.

The flowers I am growing for my elder son’s wedding are coming well, and should be in bloom in a month, on time.


I have had a fascinating two weeks, with a speech to Shropshire disability network and a workshop at the Alzheimers Show  with DEEP, about what is good for my (our) wellbeing.

And yesterday I was at a new patient co-production network design group in London talking about how we would develop the network in the future.

So, yes, I’m busy. Or, as I said to a swimming and dementia friends colleague today, I have been just doing stuff. Without which I would be bored.

What was striking about the six of us in London last week, who all have young onset brain disease (dementia), oh my gladioliwas that we all said our diagnosis gave us new life.

Yes, it’s shit.

Yes, it’s bereavement.

Yes, it’s the road to nowhere.

But we all, unrehearsed, said we now do things which we would not have done without the diagnosis.

It’s a sort of release from those last ten years of managing to stay in your job. Struggling to survive. Wanting to do other things, those dreams.

We just have fun. Or write poetry. Or walk. Or cycle (a long way). 

We are not sad. We are not doomed. We are not imprisoned.

We are released.

Bit like “when I am old I will wear purple”.

It’s a release.

Why the hell does it take brain disease and impairment to allow us to be able to just do what we want?

It’s like being a hippy in 1967. Flower power.
Do you remember that fab song, Are you going to San Francisco? Scott Mackenzie, I think.

And Woodstock.


I feel liberated. Free of the conventions and rules that govern people.

I don’t have to wear a suit every day. Or acceptable shoes. Or organise maternity cover. Or negotiate with a member of staff who arrives late every day. Or find ways to get rid of staff without sacking them. Or do the monthly time sheets.

No, I can walk with Lupin up a hill. Talk to a stranger at Colemere with a husky cross rescue from Indonesia. (Yes, true.)

I can grow flowers for my son’s wedding. And have a beer with him. And get measured for tails.

Yes, I make mistakes. I find I have not taken a certain pill for a few days. Or I’ve lost (thrown away) my shoes. Or I fall over. Or I wonder which way to get back from the toilets.

But I tell you what…I’m right on the money if I have time to prepare my brain. 
……..

I’ve recently been doing some work to establish a new network of people/patients with long term conditions and life changing diseases or disabilities across the country, to promote co-production in healthcare.

We are a small group, head-hunted (no less), and I just find the other people involved wonderful to be with.

So enthusiastic, so knowledgeable. Diverse. Driven by values, and all committed to influencing change in the NHS.

I have had issues with the patient leader programme. It started a few years ago with an open access training programme of six sessions. Self-selected membership.

And many of the patient leaders from this programme were anything but leaders.

But our new network, which we are still designing before launch, will be different.

It won’t be a hierarchical organisation.

It won’t be a free for all.

And it won’t accredit just anyone who chooses to sign up.

What it will be is a pool of people with the skills and values to lead or take part in co-design and co-production around the country. 

We will introduce a new paradigm for patient engagement.

We will be equal, respected partners with paid NHS staff.

We will be valued because we will bring about shared solutions that are equally beneficial for patients and providers.

……..

I also recently met the commissioners for mental health services and dementia in Shropshire to talk about why on earth there is so little worthwhile support for people living with dementia here.

Post code lottery.

After lots of detailed explanations, it became clear to the three of us that if there was no money available we would have to create ultra low cost solutions. Community based.

So, we will work to set up a county wide network of peer support groups, for mental health and dementia illnesses, and to develop co-production with providers for the services WE want.

The reasoning is that if the commissioners are (for one reason or another) unable to change their pattern of spending, we service users should combine to work with the provider to change what they provide to what WE want.

Co-design. Co-production. Service users at the heart of services. Personalised care.

You name it…we want it. And it doesn’t need to cost much. 

If we mobilise we can get it.

The impact of dementia

This is an edited version of a speech I gave today to the Shropshire Disability Network.

Dementia is a generic name for symptoms resulting from brain disease.

Depending on what the disease affects, your brain may shrink, neurons may tangle and stop transmitting, and very specific functions may work less well or not at all.

There are well over one hundred different diagnoses for dementia, the most common being Alzheimers, vascular, dementia with lewy bodies and frontotemporal lobe.

But everyone is affected differently. Everyone’s symptoms are different.

 

Once you’ve met one person with dementia…you’ve met one person with dementia.

In my case….about six years ago I realised I was having difficulty organising my work, remembering what I’d said to whom, at which meeting, forgetting names, taking a little longer to explain myself.

I was working part time, having resigned from a full time job with stress. My doctor assessed that I was stressed. And that my cognitive impairment was related to work stress and depression.

I had visited the memory service when I was unable to work full time, and had a brain scan. But the diagnosis at the time was depression and stress.

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Later, in my part time work, I started to use my own iPad for recording and organising everything I did. Every conversation was noted, every meeting summarised. Every appointment recorded. There for me to check regularly and frequently. I managed.

But I could not grasp the explanations of a complicated system that my team used in their work. Time and again they explained and I just could not get it. And remember it.

Eventually that job came to an end, for complicated reasons, and I asked my GP – for the third time – for referral back to the memory service for assessment for dementia. My wife and I knew that I was not functioning properly.

I remember having to have silence in the car trying to navigate in France on a family holiday. I could not work anything out if there was music or conversations going on. That has not changed!

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It took a day and a half of tests and a brain scan to come to a diagnosis of mixed dementia….Alzheimers and vascular. You see, I have a fairly high IQ, a degree and professional qualifications, and I compensate for my reduced functioning. So most people don’t think I could possibly have dementia.

They say…”well if you’ve got dementia I must have too. I lose my keys all the time. I can’t remember people’s names.” Etc etc.

You see, people think (and I include GPs) that dementia is about memory difficulties. And they think you only get the brain disease that results in dementia when you’re old, in your seventies and eighties.

So, what is the impact of this brain disease on me and others who live with dementia?

I do have difficulties with words, especially with people I don’t know well. I can’t process incoming signals as fast as you, and it takes very little distraction to put me off my stride.

Hence, I can’t have music and conversation at the same time, or TV for that matter.

If you ask me something I’m not expecting I may not be able to answer. I have to be zoned in. I have to find the bit of my mind that I need for a particular reason. Then I’m ok. It takes time for my brain to find a route through to the memory or the thought that I need.

You see, if you’ve got billions of cells in your brain, billions of neurons that link up in billions of different patterns to create billions of memories and calculations, if a few million go down it might be a very small proportion, but that tiny, particular function will not work as well or as fast as before.

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So you slow down. Conversations have pauses. Listeners have to give me time to work out what I want to say and then say it. I tend to avoid starting conversations with people I don’t know at parties or meals together because I can get foggy after the usual cliches. And if they ask me about me I can stick completely.

I find I make mistakes judging distances, steps, changes in floor level. Dark patches or stripey patterns fool me and I may lose my balance, or miss a step. Or just feel discombobulated.

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Occasionally I lose touch with where I am. Disorientation. The first time it happened I was shopping in Aldi. For about ten seconds I hadn’t a clue where I was. Then it came back. Doesn’t happen often thankfully.

I cannot fix names in my memory. Well. I can sometimes fix them, but many names just won’t stick. So, a PA at SATH recently told me her name several times in the space of one afternoon. I tried and tried to fix it. But it just went. Flew away. And there’s a plant I cannot remember. Euphorbia. I have to find ways round to find it. Or just point to it and wait for my wife to complete the sentence.

I have almost lost my sense of smell. That’s both good and bad. I would love to smell the freshly cut grass at home, and flowers and roses, or damp woodland, walking with my dog. But I also cannot smell the less attractive smells…which I’d better not name.

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What is the impact of brain disease on my life?

Unlike a person I met recently (who ought to have known better) I don’t regard it as sad. It’s not ended my life. It’s not a death sentence.

It has merely slowed me down a little. I can still do everything I could four years ago. But I do now make choices that I wouldn’t have thought about before.

For example, if I can I avoid crowded places, like noisy restaurants or pubs or parties. I prefer to invite two or four friends round for a meal at home, where I can control the environment and can talk and listen easily.

If I do have people around when I’m cooking I ask them to go elsewhere while I cook. I can’t think about what I’m doing and have loads of noise and conversations going on around me.

I don’t drive in the dark. It’s to do with lights in my eyes, and flashing, which just disorientates me.
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But the biggest impact has been through meeting a lot of lovely, enthusiastic people who also live with dementia and work to raise awareness and improve support, around the country. I really enjoy meeting up now and then, perhaps in London or North Wales, or Shrewsbury.

I feel excited to work to improve life for people living with dementia. It’s given me a new challenge and every time something goes well I feel tremendously pleased. And vindicated.

Because sometimes you can feel quite alone, and it’s really important to be reminded that others think the same and are working to improve life for people living with dementia.

Twitter and Facebook are tremendously helpful in sharing information and keeping up with what’s happening around the country.

……..

I am lucky. Really. I got my diagnosis quite early on in the progress of my brain disease. So I have lots of time to do things I planned for later in life, and to be active and engaged in the community.

I don’t regard it as sad that I’ve got dementia. It’s shit, but it’s just life, just like getting cancer (which I’ve also had) or heart disease (which I also have).

I’m not always optimistic. Far from it. I have black days. Black dogs. But doing stuff to improve people’s lives is mostly rewarding and even fun.

I’ve started two DEEP groups, in Shrewsbury and Church Stretton. These are just social meeting groups for people living with dementia to meet, chat, share experiences and information. And to have someone listen to them.

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The impact of these brain diseases on many people living with dementia is disempowerment. One or two people who come to the DEEP groups speak of being told they are useless by their family members, or having their wives speak for them all the time. I see men just stop talking because they have given up, and they know their wives will just take over. Or not wait for them to find their words. When we meet away from family and Carers we open up. We share what we actually feel. Often frustration and bloody annoyance.

Of course, it’s not easy for spouses or other family members. It’s bereavement. For both sides. But we really need to provide support for people living with dementia, and training and support for their spouses and families. There’s a great little training course called “getting along” which I’m hoping to bring to Shropshire soon to help couples get over these difficulties.
……..

Now let’s think about disabilities.

Let me quote from a DEEP guide to dementia and rights…called Our Dementia, Our Rights.

“Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’.
The fact is that dementia is counted as a disability if it causes “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities” (Equality Act 2010).
Likewise, Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”
The word ‘disability’ is therefore not a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Another group–people with mental health difficulties–don’t consider themselves as disabled either, but they have made very good use of the UN Convention to claim their rights.
So, even if you don’t think of dementia as a disability, the law does define the impairments it may cause in this way–and this can be to your benefit.”

I don’t think of myself as disabled.

There are things I cannot do as well or as easily as ten years ago. And my symptoms will get worse. There’s no question about that.

But am I disabled?

I say no. I still have plenty of abilities. I am able to do whatever I want. I can take risks. I can cook. I can walk up hills. I can shop. I can work with directors of NHS trusts. I can speak at conferences, organise DEEP meeting groups, chair a patient panel at an NHS Trust.

It just takes a little more effort and organising than ten years ago.

But I do think that the legal definition of disability is important because it allows people to use the law to influence change. So I accept that I am, by law, disabled, because that is the way we people living with disease or physical impairment can get equality of access and treatment.

But please don’t let “disabled” define you. Disabled is just a word that allows us to get some benefits (though that’s increasingly difficult) and to be guaranteed certain rights.

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Intrinsically, we are not unable to do things, to live our lives as we choose.

We simply are not perfect. But, you know, no one is.

Everyone has impairments from perfection. Whether it be intellectual or physical.

I want everyone in Shropshire and Telford to simply be accepted for being people. We have incredibly diversity.

I hear people say, time and again, “of course, we don’t have diversity in Shropshire”. What they mean is, we’re 99% white Caucasian.

But we are all different. Every person with brain disease is different. Every person has different physical abilities. Every person has different life experiences, memories, family memories, personalities…

We have phenomenal diversity. So let’s celebrate diversity in Shropshire and Telford.

We all lead our lives. We all make choices. We all take risks. And we all have huge amounts to contribute to the community.

I welcome our differences. And I won’t be defined by dementia.

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I’ve changed my mind…

I’ve changed my mind.

I don’t have dementia any more.

It’s really liberating.

I no longer feel like I belong to a disability group.

A group of 850,000 people with mental illness for whom there’s no hope.

I decided this morning when I woke up.

I have brain disease. Not dementia.

Just like I have heart disease, and bone disease, and vascular disease, and kidney disease…

I have brain disease.

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Little tiny parts of it are being enveloped, strangled, and killed off, and gradually these are growing and coalescing into larger areas which are meant to control functions that are normally automatic.

I’m no longer demented. I’m not suffering. I’m just living and dying.

As is everyone.

From the moment we are born, or even before, things in our infinitely complex bodies go wrong. And some people die in infancy or childhood, some as young adults, some in their fifties.

Most of us get past seventy. But we’re all not as we once were.

It’s life. And death. Of tissues, cells, muscles, bones, organs, and brains.

And for the most part we recognise and accept the age related physical diseasing of our bodies. We know we will get old, we will creak and stiffen. There will be things we can no longer do.

I wish I could still climb steep hills and mountains, and I harbour a belief that one day I will do so again. But I accept, reluctantly, that my heart and arteries are diseased and at the moment I can’t get enough oxygen into my muscles to carry me up there.

I still walk miles on the flat with Lupin. And enjoy it.

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What, then, is it that makes our view of dementia different? Why is there this cultural, deep seated revulsion at the thought of developing the symptoms known as dementia?

I think I have cracked it.

It’s because we don’t want to lose our minds.

We don’t mind losing a finger, or limping, or taking tablets for diabetes. But if you can’t communicate, speak your mind, and think, who are you?

And we have deep seated cultural, but largely unconscious, fears and prejudices about people who are different from who we think we are.

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I am no different, and I struggle with my unconscious bias and prejudice which I suddenly see spring up from time to time.

Why does mental illness get much less funding per person than physical illness?

Why in the recent past were people with mental illness locked away out of sight?

Why do we squirm and look the other way when a person talks loudly and randomly on a bus or train and doesn’t follow the social norms?

We don’t like it because we’re frightened and because they’re different from us. And we think thank God it’s not me and turn away.

So, let’s think about brain disease.

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Physical damage to the brain, that gradually slows and then prevents bits from functioning as they should.

It’s no different from arthritis.

We just think it is different because we see it differently and we are frightened.

If we lose our brain we lose our mind.

And if we lose our mind, who the hell are we?

As I said last time, if I lose my memories and reference points, my map of me, because I can no longer access it, who am I?

It’s frightening.

But to understand that it is just disease of the brain, not madness, helps me to approach it more calmly.

And it would help us all to accept that we’re all diseased and we all live on withm our diseases.

As best we can.

As we choose to live our lives.

No more demented suffering. No more struggling. No more death sentences.

Just being alive and living as best we can.

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Let’s welcome our differences.

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Or, at the very least, ignore them.

Bleak

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This is bleak.

I don’t apologise for being bleak; I am exploring my thoughts about the future.

As brain cells degenerate, and functions function less well,

As clarity clouds and anxieties grow,

I wonder about what will be left of “me” in the coming years.

We exhort people to “see the person not the dementia”, and rightly so.

From the outside, we can try to connect with a person’s life, to help lead them back to memories they can still find and enjoy.

Though do we not also lead them back to memories they have tried to forget, and which may haunt them?

But try to get inside the person sitting in that chair, or lying in that bed. Towards the end of their journey, who are they? Who do they feel they are? How do they know who they are?

I’m not a philosopher or a religious scholar. Nor am I a psychiatrist.

But I live and think and write and listen and reflect, and…well…
…….

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Who am I?

Who in this world am I?

What is it that makes me me?

Who am I when I am no longer me?

What is it that makes me me and not you?

And who are you?

How do I know you are you?

I face losing what makes me me in the coming years.

Dementia won’t steal me. It won’t kill me.

My brain disease might though, if the other bits don’t give out first.

I will slowly, imperceptibly, grindingly, lose me.

My body will be here, but I will be gone.

My blood will circulate, my chest rise and fall, my eyes glance round or stare at something…

But I will be gone.

Because I will not remember.

I will not remember yesterday or last week.

I will not remember the calls of birds or the names of flowers.

I will not remember helping teenagers to love Shakespeare and Seamus Heaney.

I will not remember my children being born.

My wedding day, my 50th birthday, my 65th…

What I did yesterday.

Where my wife is.

What I ate for breakfast.

Who, then, will I be?

Because I am what I know, and what I remember, and what I feel.

I am billions of pictures and sensations archived in my brain.

When I cannot access them who will I be?

When I sit and look out at the clouds, or watch strangers passing by, who will I be?

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My uniqueness is my archive of memories.

I’ve seen the same world as you, but I’ve seen it differently.

The smell of bracken is my childhood walking up the Abergavenny hills.

The smell of a crocus or a daffodil is my schooldays in Edinburgh, escaping from bullying and loving wildness.

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The sound of a symphony orchestra is my Thursday evenings in Birmingham Town Hall in my twenties.

The taste of Beaujolais is helping my dad to bottle wine from big oak casks in the kitchen.

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So who will I be when I can no longer remember these things?

My father-in-law had a ten second memory. He was lost.

And he kept trying to escape from something…probably a ship that sunk beneath him in the war.

He couldn’t remember that his wife had died, just kept asking where she was, and grieving every few minutes. Every time for the first time. Again and again.

Who will I be when I can no longer remember yesterday?

I will still be alive. I will still exist.

But I will have no anchor. I will float along, turning this way and that, at the whim of people and surroundings not of my choosing.

I cannot imagine what nothingness is.

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I cannot imagine living behind the locked library doors, my archive lost from me forever.

Swimming with crocodiles

IMG_2024I’m swimming at my local pool. Just started got in. First length.

Stretch, relax, quieten, in the moment…

A new friend I met the other day is there too, and I stop at the shallow end to chat.

She’s talking to someone about a dementia friends session she did at the cricket club. And what she’s doing around the town to promote the cause.

And I say hello and try to join the conversation.

But I’m not there. I’m not zoned in.

I can’t find the answers. The subject. The knowledge.

I start the simple stuff, the how are you, yes I’m fine, stuff.

They’re talking about how you access the right people in the town…

Not to take on too much…

How people living with dementia aren’t seen in the town much unless they’re with someone.

And I just can’t get to what I could say. I’m blank.

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Can’t find the path to the dementia stuff and opinions and thoughts and knowledge that is lying somewhere inside.

It’s there, I know.

I stand in the shallows muttering something trite.

What should I be saying to this person who doesn’t get why you don’t see people with dementia walking around town on their own, independent?

And gradually I search and find the route, like a satnav downloading its map data, and mapping a route to a chosen destination.

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What shall I say? What shall I say?

What’s the right response?

Where is it?

…Everyone is different…

…Not everyone with dementia is at the difficult end of the journey.

…They can live on their own, go into town on their own…

Yup, that’s better…

Found it.

The zone.

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And suddenly it’s ok.

…so we need to make it easier for them to visit the shops, use a bus, see their friends.

At which point I have a very clear route in to where I wanted to go.

It takes time to work out ways into what you’re searching for.

Doing (quick) crosswords I run through the alphabet if I’m stuck, trying as many alternatives for each letter in order, till one clicks into place.

Or I cheat by googling.

Same when I’m searching for names. When I’m writing emails I work through the alphabet until it just clicks. And usually it does. Might take a couple of minutes.

It’s a workaround.

If I’m looking for something at home I have learned to stop, go away, return, and methodically, slowly, go one by one through the items in front of me until the right one turns up.

Look at each one, name it, even touch it, move it…

If it’s still not there after three searches I reckon it isn’t there.

It’s a work around.

Overcoming obstacles

I’ve heard several people talk about finding workarounds to manage their dementia symptoms and difficulties.

Of course, you have to be aware of your dementia in order to know that you need a work around.

You have to know that you can’t rely on your brain any longer to work in a flash.

In less time than it takes to turn your head. Or glance around.

We should share our workarounds.

Then we’d be using them before we were lost, instead of getting out the clunky satnav or just giving up.

Agnes asks for photos of places she’s visiting in advance, so she will recognise when she gets there.

Brilliant workaround.

I write down all the names of people at meetings in sequence around the table. And where they’re from or what they do if I’ve got time.

And I always write and practice what I’m going to say, or might have the opportunity to say, before I get there. Days before usually.

Busking is for those with whole brains.

If I don’t prepare I just get stuck and miss the opportunity to pull together what I know to be true and want to say.

If I don’t prepare, get into the zone, plan the route, I am lost in a map that has no towns marked and where roads lead nowhere.

To fail to prepare is to prepare to fail.

Too right.

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I live with dementia. How can you make my stay in hospital better? (And shorter)

Get rid of the noise. The bleeping. The pinging. The clangs and the ringing.

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Allow night time to be night time, dark and quiet.

Make it more like my home.

Have sofas, armchairs, pictures…

Help me to walk when I want to.

Help me to have a dignified shower or bath of my choosing.

Help me to the toilet, not a commode. And don’t leave me there for half an hour.

Reduce the people confusion, the movement, the congestion, the huddling…

There are just so many of you.

And for god’s sake don’t talk across me. It makes me angry.

Enable me to know where I am, what time and day it is…

Help me eat when I want to, provide finger foods, delicacies, simple treats.

Just put them in front of me regularly. Don’t ask if I’m hungry because I’ll always say no.

Remember my taste isn’t very good now, so please don’t give me bland mush.

Provide coloured plates and bowls so I can see food, with high lips so I can get the stuff onto the spoon.

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Give me drinks in my favourite mug or cup.

And don’t just ask me if I want a drink. Give me one anyway.

Make sure I can hear and see.

Make the light brighter by day.

Do things with me, every day…singing, reminiscence, jigsaws, reading, music…

Use colour and decoration to make this place feel more like my home, calm, enjoyable.

Stimulate good feelings. I may not remember what you said or what we did.

But I will feel better for hours.

Touch me. Hold my hands. Put your hand on my arm.

 

Smile at me. Take time to smile, look at me, use my name.

Tell me who you are. Every time.

Wear scrubs at night. Then we’re all in nightclothes together.

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Explain what you are doing to me. Make sure I understand. Hold my hand. I may not like what you’re doing.

Talk to me about who I am. What I’ve done. My work, my hobbies, my wedding, my childhood.
See me. Not dementia. We are all different.

I’m not demented. I have a disease, and mine is different from everyone else’s.

So find out who I am.

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You see, I’m an expert on me.

Shaking the foundations

Well I’ve had a reminder that dementia does get worse as time goes on.

It’s easy at the earlier stages to forget about what’s coming. You just carry on as before and occasionally have a day when things goes dark and weary. Then you get back up again.

Anyway, why would you want to think about life in five years’ time? Best to ignore it, after doing the right things like power of attorney.

So I was cooking supper. What was it? Simple baked potato, chicken, kale, carrots…

But somehow things became disjointed. I didn’t get each part timed right…undercooked the chicken and had to put it back in the oven, so the kale was overlooked…

And the work area became cluttered with stuff. My iPad, oven gloves, saucepans, the day’s post, plates, cups, knives…and I became confused. There were just too many things to think about. My brain couldn’t hold it all.

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And I shouted and wanted to swipe everything onto the floor. Just clear the whole space. Start again or walk away.

Then yesterday I went to an evening meeting. Which meant driving in the dark, and to a venue which was incredibly difficult to find. Dark, wet, shiny surfaces, headlights not bright…I really felt unsure and lost for a while.

I’ve become a less steady on my feet in the dark. In fact I nearly fell over the other night going to the loo. Need to put a light on really.

I walked Lupin around some big fields the other afternoon and misjudged the light. So the last mile was pretty dark, on uneven fields. Very challenging now, lurching from side to side, though not quite to the ground. Even felt nauseous with the lack of stability.

What I felt for the first time was my foundations being shaken. It’s a very destabilising effect. You immediately lose some confidence, and the future looks suddenly bleak, worrying.

Your home seems solid, safe, reliable. And you just live in ignorant certainty that your home will always be solid, safe and reliable. So you don’t think about it, or worry.

But try standing up during an earthquake. I was teaching in 1989-ish, or whenever the Shropshire earthquake happened. The floor rippled, swayed a little. Apparently our cooker at home moved an inch forward and back again.

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And it shakes you to the core, because what was certain is no longer certain, and will never again be certain. Life changes in that instant.

Everything is utterly changed.