Are we empowering people?

What is empowerment?

The following are quotes from an easy read pamphlet from the Local Government Association, written I think for people with learning difficulties, who historically have often been regarded as not having capacity to make decisions about their lives.

‘Empowerment means people having power and control over their own lives. People get the support they need that is right for them. … You can’t empower someone else or make someone empowered. It is about ways of working and supporting someone that means they can take control and responsibility for their own lives.

How will we know if people are empowered? What would this look like?

It will be clear that the person has the power – they will set their own goals and make their own decisions

If people need someone else to make a decision for them it will be made in their best interests

People will have a voice and be treated like equal citizens

This means they will have the same opportunities as everyone else to live good lives in the community

People’s experiences and feelings will be valued and they will be listened to and respected

People will be safe and will feel safe

People will know about their rights and can act on them

People will have the information and advice they need so that they can make their own decisions

There will be good advocacy for people. Advocacy and empowerment go hand in hand because advocacy is about speaking up and getting your views heard. For people who need help to make decisions or someone to make a decision for them advocacy is really important

People will have the freedom and support they need to do things that are important to them’

……..

I think we need to differentiate between empowerment and confidence.

Empowerment is knowing your rights, having necessary skills and support, and making decisions about your life.

Confidence is perhaps about having the skills and courage to speak out.

You can have all the knowledge in the world about your rights, but you will only speak up about them if you have the confidence to do so.

And if you have lived a life in which you didn’t speak up for yourself you will find it hard ever to do so. But you can learn to.

The same is true of people living with dementia. If a person has cognitive difficulties they may lose confidence. That stammering attempt to find a word, or to formulate a reply to someone; that getting lost in town; that indecision about what to buy, or why on earth you came into the shop…these all feed the beast which destroys your confidence.

When someone else decides what you eat, drink, do, read, listen to, who you meet, and where, that is when you lose the ability (not capacity) to make decisions for yourself. You withdraw. You may feel relief at not having to work something out for yourself.

But that loss of confidence leads to loss of skills, and may start a spiral of decline.

Disempowerment leads to loss of confidence.

Empowerment, therefore, can build skills and confidence.

Peer groups and facilitators can hand over to members authority or power to make decisions. That is a process.

Confidence to make decision and choices and carry them through…that is different.

People may have legal power and authority to act in their own right, but they may lack the confidence to do so, especially if they have grown up or lived in a situation where they were restricted from exercising their freedom, either deliberately or by social norm.

The same will be true of people living with dementia who have fallen out of social engagement, and/or have had decisions taken away from them by those who provide care and support.

How then do we enable people to grow the self confidence and skills they need to act in an empowered way?

Making decisions requires a process. Many decisions are made with little or no conscious thought or deliberation, such as choosing what to eat for breakfast, or what to watch on TV.

Other decisions require us to work through a process of considering pros and cons and to decide what we value most.

If you have never made decisions for yourself, or have become used to not doing so, it takes practice and courage to do so.

We often say that facilitation should be about carrying out the tasks necessary for a DEEP group to meet, not about controlling what the group does. It may also be providing support for those members who need it.

Just like in a residential care setting, the best facilitation or care is the minimum that a person needs to live as they choose. It’s essential to leave as much autonomy as possible with the person. To take this away is to infantilise them, to disempower them, and to lead them to lose the skills and confidence of a lifetime.

All groups – and all individuals – are different. People with more advanced dementia need more support. The great skill in care and support must be to identify the things that a person can do for themselves, even if it is at times a struggle. Use it or lose it, we say of skills and knowledge.

Younger people who develop dementia often are still working, and their identity and self are defined to some extent by that work. They need a different sort of support, and different peer group activities, specific to their age group.

Older people may have developed their post retirement identity away from work, taking up activities that they enjoy and that keep them active. Some will have, and will still remember, the skills of leadership and management; some will remember being managed!

Either way, most people learn to distance themselves from their previous world and may not wish to take on responsibilities. Some may have grown into a new deferential role of allowing, indeed welcoming, someone else to make decisions for them. That is where facilitators come in!

The facilitator can step back to allow, indeed to encourage, members to make decisions, and can engineer situations where members have to do this. Staying in the background is the skill that the best teachers have, so that people or youngsters develop their confidence without risk of failure.

Facilitators step forward when they are needed. And back into the shadows when they are not.

Dementia Engagement and Empowerment (Project) is about bringing people living with dementia together:

• to support each other,

• to share experiences and feelings,

• to have social engagement, and

• to empower them to use their voices.

The empowerment is not about telling members of groups to go out and shout and influence and be heard. It is, rather, enabling them to feel confident enough and supported enough to have their voices heard if they have something to say. It is giving people the knowledge and skills they need to be able to make their own decisions and to have their voices heard.

Some groups just socialise and support each other. Some get stuck into influencing politicians, commissioners, companies, healthcare providers…whoever they want to persuade to change something, or indeed to hear them.

It matters not one jot whether you or your group become influencers with a purpose, because just by meeting together you are changing the way people living with dementia are supported, and live their lives.

The act of meeting socially in a peer support group, of talking together about shared experiences and feelings, or about the differences in these, this simple act gives a voice and confidence to speak up if you wish to. And it is an opportunity to learn the knowledge and skills that empower you to do so.

So facilitators can do powerful things for their groups, to share with their members the knowledge and skills they need, and to support them if they stumble.

‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has’. (Margaret Mead)

We are all, in our own ways, changing the world.

Who am I now?

Who am I?

When you retire, for whatever reason, you lose a huge part of what has been your life for up to 40 years. You may have hated work, or loved it, but it was YOU.

You are what you do. Your friends often come from your work. Your self respect, from doing a job that’s worth doing. Or from doing it well. Or being a specialist.

Your self worth comes at least in part, often large part, from your work.

Your self confidence may also come from doing a job well.

So what happens when you retire?

What happens when you are ill and cannot work any longer?

Work comes in many forms, from office to dustcart, from plumber to teacher, from unpaid carer to consultant surgeon. Cricketer. Writer. Conservationist. Cartoonist. Banker.

What the hell are you going to do afterwards? How will you keep your self respect and value?

Will you play golf? (Aaargh!)

Will you garden?

Will you learn something new?

Cos if you don’t do something for yourself you’re likely to become pretty bored and unhappy.

And that is where I found myself this week.

Covid has meant no going out, no socialising, no travelling to meetings and for many months I have enjoyed it. Just walking and gardening and zooming, cooking and (let it be said) learning to carve and paint.

But suddenly, triggered by something, I realised that I had become a ghost! I had disappeared. Nothing happened by which I could judge my sense of self worth.

Yes, I can grow tomatoes and chillies.

Yes, I can grow huge sunflowers, and lovely dahlias, plants from seeds and cuttings, and beautiful roses.

Yes, I can carve a red kite. And yes I can paint a portrait or a vase of wildflowers.

And I really enjoy doing these things.

But as much as I like doing them, and as much as others tell me they are good, after a time that is not enough.

Perhaps it is just me. But I know I need validation from the company of others. Validation from doing something well for others, and in their presence.

And I said to myself on Thursday, and to my wife, I have lost my identity. I need to get out, to mix, to see the rest of the world beyond my (lovely) garden and field.

I think there are very few people who really never need to be social. I certainly am not one of them.

My brain disease has affected my confidence sometimes, and I have allowed that and covid to convince me that I am fine at home, doing the same old things every day. But while the routine is good for the disease, it is not good for the social being that I am.

We have evolved to live in groups or communities, and to develop roles within those groups. Being outside all groups for long is intensely challenging to the sense of self.

So while I have had it pretty good during covid, it has now caught up with me.

Going to meet the Riversiders DEEP group yesterday for the first time in 18 months felt like a rebirth. Going to Aberdovey seaside next week will be the same.

It is getting back to what makes life liveable and worthwhile and enjoyable.

Being in the world.

(However depressing much of it may be.)

And goodness knows how I will manage when I can no longer drive, living here, where the nearest bus is three miles away, and taxis are very hard to come by (and expensive).

It was wonderful to see the smiles, listen to the laughter and chatter, and just get back into the group we were two years ago. And the cake was amazingly good too.

I’m not ready to hang up my boxing gloves just yet, or to be a hermit. Nor to allow this brain disease to freeze me into oblivion.

Cognitive Rehab, tips and tricks

Today Twitter was full of the publication of a new guide for people newly diagnosed with dementia. It is based on research carried out a group of academics and people living with dementia at Exeter University.

And it is FAB.

https://www.alzheimers.org.uk/blog/life-after-dementia-diagnosis-guide-setting-reaching-goals

It seems to be the work of a collaboration between Innovations in Dementia and Alzheimers’s Society, Exeter University, and (mainly or totally) DEEP group members.

People newly diagnosed are often offered Cognitive Stimulation Therapy, in the form of group meetings each week for around ten weeks. I have not joined one of these, so I cannot be sure of the content, but the main value seems to me to be to bring people together experiences and feelings.

The content appears to be aimed at getting brain function to liven up with, for example, word searches, puzzles and newspapers to read.

This frightens me silly! As does the phrase cognitive stimulation.

I read a year or two ago that there was no evidence of benefit from the ‘therapy’, but that the peer group element did help people a lot.

So Exeter et al seem to have researched a different approach, namely Cognitive Rehabilitation, helping people develop workarounds and practical approaches to everyday living challenges.

And the real GEM here is that it has been develop WITH people living with dementia.

We know what it’s really like.

We know about learning new ways of doing things, workarounds, tips, “cognitive ramps”.

Indeed, we have listed over 600 of these on the Dementia Tip Share website, and really encourage anyone affected by dementia to look at it. You can search or just browse, and you can add your own too.

https://dementiatip-share.org.uk

What is so brilliant about this new (evidence based) guide is that it is a collaborative project and it puts people with dementia in the driving seat.

There have been concerns over recent years that Alzheimers’ Society and other well known third sector organisations have decided what to offer to us, rather than asking us first.

And tere has been little attention paid to people with young onset dementia. Cafes and groups run by the big guns tend to offer childlike activities in a ‘done to’ way rather than ‘done with’.

That might be appropriate in some circumstances, especially for people in the advanced stages of the disease, but not the rest of us: up to 75%?

And anyway, if you don’t find out what ticks our boxes, individually since we are all different people, why should you provide us with primary school crumbs? And be paid to do so!

So, it is this new spirit of working together across organisations to put us first that I so welcome. And I want to congratulate the One Dementia Voice group of organisations for their work on collaboration.

In particular, thank you to Kate Lee, CEO at the Alzheimers Society, who is providing such refreshing leadership, along with, of course, Innovations in Dementia directors and staff.

When I see something so great and refreshingly on our side (for a change) I want to celebrate it, and the people who have done it.

So here is my hand of friendship!

Hope

Hope

What might we hope for

Living with dementia?

It’s not easy to have hope

In your head when your

Brain disease is killing you.

There’s no cure, we’re told, so

Why get diagnosed?

There’s little help or understanding…

Those precious gems that occasionally tickle you.

Bereavement plays its tricks.

You’ve been struck off the list of longevity.

The grandchildren

The garden

Walking

Working

Trips you’ve dreamed about while you

Stared at a screen.

All might be gone

Or not

In a foggy distance…

Hope is a smooth round pebble in your stomach.

You carry it with you

Caress it, cradle it

And guard it longingly

As long as you can.

Hope is…

Perhaps I’ll die suddenly before I’m stuck staring out front

Perhaps I’ll manage to end it myself…but when? and how?

Perhaps I’ll end up in a really nice care home…

Coin toss chance?

Hope is…

Optimism

Hoping against the odds that all will be well

Believing life is worth living

Getting up each day with enthusiasm

A smile

There is, after all, no hope for us.

Quickly or slowly,

In a few years or two decades,

We will have withered on our vines and

Fallen.

How do you continue to breathe and eat and smile when

You lose all that makes it worth it?

No, it’s not hope we need,

– there is none –

But joy in the little, tiny pleasures

The here and now.

The smell of woodsmoke

Sounds of spring birds rejoicing

Damp leaves under foot

Scented sweet peas on the table

Butterflies dancing in the sun

Birch leaves rustling breezily

A good cup of coffee

Your favourite cake

Sharp sweet tomatoes fresh from the greenhouse

Fox tracks in light snow

The crusty bark patterns of an old oak

And fresh crusty bread out of your oven

Pleasures.

What else is there?

The stone dropped out of hope in that icy clinic room, a few years back.

Now there is simply pleasure.

Find it wherever you can.

Hope

Hope

What might we hope for

Living with dementia?

It’s not easy to have hope

In your head when your

Brain disease is killing you.

There’s no cure, we’re told, so

Why get diagnosed?

There’s little help or understanding…

Those precious gems that occasionally tickle you.

Bereavement plays its tricks.

You’ve been struck off the list of longevity.

The grandchildren

The garden

Walking

Working

Trips you’ve dreamed about while you

Stared at a screen.

All might be gone

Or not

In a foggy distance…

Hope is a smooth round pebble in your stomach.

You carry it with you

Caress it, cradle it

And guard it longingly

As long as you can.

Hope is…

Perhaps I’ll die suddenly before I’m stuck staring out front

Perhaps I’ll manage to end it myself…but when? and how?

Perhaps I’ll end up in a really nice care home…

Coin toss chance?

Hope is…

Optimism

Hoping against the odds that all will be well

Believing life is worth living

Getting up each day with enthusiasm

A smile

There is, after all, no hope for us.

Quickly or slowly,

In a few years or two decades,

We will have withered on our vines and

Fallen.

How do you continue to breathe and eat and smile when

You lose all that makes it worth it?

No, it’s not hope we need,

– there is none –

But joy in the little, tiny pleasures

The here and now.

The smell of woodsmoke

Sounds of spring birds rejoicing

Damp leaves under foot

Scented sweet peas on the table

Butterflies dancing in the sun

Birch leaves rustling breezily

A good cup of coffee

Your favourite cake

Sharp sweet tomatoes fresh from the greenhouse

Fox tracks in light snow

The crusty bark patterns of an old oak

And fresh crusty bread out of your oven

Pleasures.

What else is there?

The stone dropped out of hope in that icy clinic room, a few years back.

Now there is simply pleasure.

Find it wherever you can.

A Big Tick ✔️

Well, well, I say. Well, well.

I had my first ever annual dementia review with a GP this week.

That’s an oxymoron, if ever there was one, given that I was diagnosed 7 years ago.

He called me a fortnight ago and said he could do it over the phone. But would prefer face to face.

I, of course, agreed.

I did my prep, making notes about symptoms, changes, what makes me happy, any other difficulties. I really did wonder if this would be another short, pointless review meeting, like the ones the Memory Service used to hold with us. And a friend told me a week ago that his annual GP review was useless.

I have come to know this GP well, and he me. So I had hopes. I was optimistic, tempered by experience.

He ushered me in (I won’t say how late it was…I was just beginning to think of walking out).

He asked how I wanted the meeting to go. So I asked him the same!

A conversation, we agreed.

He seemed to have to remind himself once or twice what he was meant to do during the review, and I infer from this that he has not done many.

He was very much in listening and reflecting mode, which was good. Using my notes I described recent foggy days, losing words, getting stuck in sentences, wobbling…and then I thought…

‘Of course, you don’t see the real me usually. You don’t see the person at home, foggy, fed up and tired.’

He agreed.

We spoke about hyperacusis, a term he said he did know about. (Tick)

We spoke about overload for reduced brain function, trying unsuccessfully to screen out noise and lights, and interferences.

We spoke about peer support and DEEP, and zoom meetings.

We spoke about lockdown having taken pressures away so that my symptoms have subsided a little, and I get less stressed less frequently. But that I think I have lost confidence or desire to meet people and travel.

We spoke about my thoughts (and dreams) returning to childhood and teenage years, and how that was a distressing and distressed period of my life which haunts me.

Dr Nick asked about whether my zoom deep friends feel the same or have similar symptoms. How common are these?

Yes!

And we spoke about medication. Should I change from Donepezil to Memantine or Galantamine, he asked?

Nope. I am happy with my donnypills; they suit me. And people tell me the others cause nausea and other things.

He said he was supposed to do a memory test with me.

‘Well you can if you want, but I shall score high marks, as usual. So let’s not bother.’

Fine. He agreed.

I explained that I had learned to paint and to carve in the last 18 months, which made him smile. And that I had been shown how to paint by an artist with dementia. (I did not miss an opportunity…)

He said that the main reason for doing the annual review is so that he can connect me with services or support if I need them.

Excellent! I said, though I have no need of that at the moment.

We spoke of my swallowing and coughing difficulties, which I think are connected to worsened brain coordination of physical activity. I keep inhaling a little food or drink at the top of my bronchus, so I choke and cough. Just don’t quite get the sequence of muscles right, I think.

But we agreed that it was too early for an assessment. And did I want to be told to eat pulped food?

Perhaps not.

And that really was it. I had been listened to. I had been smiled at. He had not made notes. And he had looked at me throughout.

What’s not to like?

And thus I left, telling Dr Nick that it had been a good review. Thank you.

Later…I descended the slope a little into fed up ness.

And now I realise why.

How often, when we are asked how are you today?, do we reply ‘oh, fine’?

It is just what most of us do, and the others brag on about their symptoms and meds for half an hour. And that’s not people living with dementia, generally.

We say…fine…because it is simply easier.

And because to tell the truth would be to face one’s demons. The bloody disease.

I was down for the rest of the day because I had really opened up and described how I really feel some days. And how the symptoms are getting worse. And life is just becoming harder to do.

So, you GPs and other professionals, if you want the truth, which you should want, shouldn’t you?, put the person at ease first, give them time, smile, look at them, sit at the same level. Allow silent spaces. I, and most, need lots of time and encouragement to open up our souls, even just to remember those symptoms and feelings, let alone put them into words.

A BIG ✔️ for Dr Nick. ( Sorry for the near pun)

I hope that more people will get annual dementia reviews that are as useful and positive as mine.

A Bad Day

Lately I have been having more days when I have the fog.

And twice now my plans to picnic with DEEP friends in town have been scuppered by this fog.

We who live with dementia often talk a out brain fog, but rarely do we try to define it. So here is my attempt today.

A Bad Day

My eyes lie heavy on my cheeks

Sore, half closed, poorly focused

My body is heavy, arms dropped

Legs just wobbling along in meanders

I cannot think today

I cannot drive or focus or do stuff

My head is full, not of thought but of heavy fog

A dullness that is murky white noise

A lorry passes slowly and blasts me into

A scream of pain and nothingness

I stop. I hold my head. I bend with the noise

People look over at me, stuck, wobbling, in the road

I meet a dog walker who wants to talk

Please not today, I am just existing

Back home I sit, head in hand, eyes closed

And wonder, whether, more days will be like this

I’ve lost my nerve, it seems

I’ve lost my desire to look

Outside my world at home

Beyond the flowers and grass and trees

That mark my borders

I’ve lost the power to do what I plan

Every time I plan a trip I have

One of these days

So I sit and watch the tall flowers

Waving on their stems in the wind

The trees swaying

Clouds flowing over the sky

And I think

The times they are changing

I am 70, with diseases galore

And I am failing more often.

And I think

Just go with it

Flow with it

Don’t imagine what you’re missing

Just watch, sit, drink tea, paint, and

Let life take care of itself

What does it all matter?

I choose to wait

For my power to return

My superpower

Until then I will wait and watch

What barriers prevent us from living our lives as we want to?

A DEEP discussion

Earlier today a dozen of us who pretty regularly meet virtually through the DEEP network discussed what gets in the way of us living as we want to. Here I will try to sum up the key points.

Reminder: DEEP = Dementia Engagement and Empowerment Network

Round about 0.1% of 850,000+ people diagnosed with dementia in the UK belong to or meet within the DEEP network.

And nearer 0.01% have been meeting over zoom during the covid era.

If anyone thinks we are not representative of the 850,000, think again. The 12 of us today have spoken to many many others, and we all have expressed at least some of these thoughts over the last year or two.

What do we mean by barriers? Well, we have been diagnosed with dementia of some form, at probably varying stages of the disease. Most of us are under 75 now, but many were diagnosed before 65. Barriers that prevent us from living as we want to come in many shapes, and not just from the dementia itself.

People often talk about the need to ‘live well with dementia’. I am one of those who dislike this term. I do not want to live the perfect, saintly life that ‘well’ implies. And I doubt if many people reading this live ‘well’ all the time.

But we do want to live as we choose, to do the things that matter to us, that give us the will to get out of bed, and that make us smile.

Receiving a diagnosis, most of us have been told that we can no longer do certain things, many things, and that we should prepare for the late stages and death. And consequently, a significant number of us have contemplated suicide, at least in the early months after diagnosis.

Without supportive contact we have to muddle through, survive our instincts, and hopefully emerge back into daylight. We are lucky, and exceptional, if we manage to find a peer group that suits us, usually a DEEP group.

All of us, without exception, say that it was discovering DEEP groups, and the network as a whole, that turned our corner. Meeting and talking to others with the disease, and usually in around the same age decade, is what opened up our new lives for us.

Only we understand and get it. Only we make no or few assumptions. Only we support each other through the good, the bad and the ugly times.

So Barrier No 1 is the lack of peer support groups that we can fit into and enjoy. The DEEP network is wonderful, but no more than one thousand people ever attend meetings, either virtually or face to face. That leaves 849,000 people who don’t. Remember that number.

What we want is facilitated peer groups, for either plwds, or unpaid carers, or both, where we members make all decisions and lead the way. We just need a person/organisation that can facilitate the meetings happening. Cheap really, but for most in the early and middle stages the only and best form of support we need.

Barrier No 2, in no particular order, is the difficulty we face getting our other physical diseases or conditions treated and improved. We sometimes wonder if there is a degree of rationing working against us when it comes to getting medical care. There are certainly barriers to accessing care, such as complex and very long wait phone calls, or complex e-consult online forms. Last time I challenged a GP over this I was told that they could not make exceptions for dementia to allow people to get quick, simple access. Actually, and legally, they should do, as we have a disability which requires them to make adaptations to help us access them.

Barrier No 3 is probably the disease itself. Living with the brain disease that causes symptoms known as dementia causes us to fog up and to become lethargic. There are days when we just cannot get round to doing anything, or talking. It is brain fog and fatigue. Given that we cannot avoid these happening, it is all the more important that the daily tasks of life are made as simple to do as possible.

Which brings us to dementia friendly or dementia welcoming communities and organisations. There are far too few ‘cognitive ramps’ when we go out to help us through our days and our tasks. Wheelchair users use ramps, or dropped curbs. We rarely have the equivalent. Thus, back to that GP booking service…why can’t we have a simplified and quicker process to access support and care?

Another barrier, No 4, is our own mental attitude and health. From day to day we go up and down, far more than before dementia. Deeper and higher, and more frequently. Our low mood and our lethargy and fog just debilitate us on increasing numbers of days. And the only (partial) solutions or supports I can think of are access to peer group support and good, timely medical care.

Dementia just makes everything more difficult, immensely more difficult and tiring. So anything that reduces the barriers will help us to live as we want to.

Barrier No 5 is anxiety and loss of self confidence. We are told at diagnosis not to take risks and not to get tired. To do less. That is the start of the downhill process of losing confidence, and worrying that something will go wrong. And, of course, we know things do go wrong from time to time. Will we able to work around a difficulty? What happens if…? It does not take long, or many small incidents, to make us doubt our ability to venture out to do what we enjoy, or indeed need to do.

Understanding and awareness of dementia among society as a whole, and professionals in particular, would go a long way to helping us remain confident to get out there. Dementia Friends is great, but very slow to make any visible difference. Wellbeing requires doing what makes you happy, and keeping socially engaged. Learning new things and being close to the natural world also have huge impact on wellbeing. So why don’t professionals encourage us, rather than telling us to avoid risks. Everything is a risk! What is life without risks?

So there you have 5 key barriers to us living our lives as we want to.

I wonder how long it will be before society as a whole recognises that we can be helped to overcome them.

Palliating time away

To palliate

1. make (a disease or its symptoms) less severe without removing the cause.”treatment works by palliating symptoms”

Similar:alleviate, ease, relieve, soothe, take the edge off, assuage, allay, dull, soften, lessen, moderate, temper, mitigate, diminish, decrease, blunt, deaden, abate

2. 2.
disguise the seriousness of (an offence).

The Palliation phase.

A time comes when you start the count down.

Maybe you run out of steam a little more quickly.

Perhaps you get a bit wobbly on ladders.

Or you just put things off till tomorrow.

Could be disease, could be ageing.

Could be dementia, could be diabetes.

Could be just, well, not really caring any longer.

Someone else can sort that out when I leave by one or other of the exits.

Sometimes a son or daughter will offer to do things.

At first you decline; you can’t admit decline so you try.

A bit later they just do things.

And you know then that the timer is getting close to zero.

Who are you when you can no longer fix that window?

Who are you when you don’t look after your money?

When you sleep more than you wake?

And the garden overgrows, you wear the same socks for two days, and washing up sits on the side?

Who the hell are you?

When your mind is filled with songs and pictures and re-enactments from your twenties?

When you finally stop despairing at what you see around you, and at what you read, and give in to endless absence?

Your world closes in. Others don’t intrude into yours like they used to.

You begin to wither on your vine, wrinkling and aching a little more each day, leaves dropping now and then.

….

Medicine tends to regard palliative care as the last year of your life.

When you are expected to die.

When does that become obvious, I wonder?

Cancer is pretty obvious, probably. And heart failure. And Parkinsons.

Although every disease starts somewhere before you find it, and every outbreak moves differently.

Do WE know when our last year is beginning?

And if we do recognise the subtle signs, what should we do?

Brain disease is here to stay. It won’t go away. And THEY can’t cure it.

So they palliate.

If we have little pain, what do they palliate?

If we lose the energy to get up and go, what do they palliate?

If we move gently into another world of re-enactments and memories what do they see?

Odd tapping. Rhythms they do not follow. Little snippets of random, one way conversations.

We talk to people we know from years ago, we sing songs from 50 years ago, we try to re-act and change the scenes that haunt us.

We are on our own.

They can only palliate what they see and measure.

But if they know our life story, they may be able to meet us now and then, where we are living.

If they find the time and patience and interest.

Heart of Darkness

In recent days I have talked with zoomy friends about thoughts and feelings about our disease.

You never know when these thoughts will surface.

They swim up and bite you.

You can usually see them there, under the surface, gliding around, twisting, sliding, feeding…then

Bite.

A circle ripples out and swallows you into that darkness where everything is fluid and frightening.

I think about my disease and its effects every day, without fail. Often hourly, whenever I do something, and I have to think harder to male sure I do it right.

This brain disease is like that. It hiccoughs the automatic sequencing that you have done all your life. Everything you learned from birth. Little bits get lost or don’t work, so the chain is broken and you do things wrong.

Pour your drink over your supper.

Talk to the invisible visitors that come and go.

Make tealess tea.

Be unable to tie shoelaces.

Lose words.

You know about this, I know.

How do these chain breaks make you feel?

Do you get angry when they happen?

Do you imagine your future?

Do you weep at the loss of skills or memories?

I do, indeed, think frequently about my disease and its effects, but not often in a fearful way.

I have grown accustomed to living with physical defects since I my 20s and I developed a bone disease on my lower spine. It stopped me from playing sport, and became disablingly painful at times.

Other illnesses and diseases have got me as the years rolled by, so I just live with whatever symptoms I have at any time. Take the pills!

But plenty of people have led quite healthy, active lives, before brain disease visited them, and for them it can hurt more.

There we were, painting, chatting, staring at ourselves in mirrors, attempting to make a picture of our faces and our dementia.

When you paint a person you interpret them. You don’t take a photograph, an absolute copy. (Although of course photography is an art too.)

One day you will paint a different person from another.

And to paint yourself is to look deeply into your thoughts and feelings.

My face can look pretty miserable if I include all the very real creases and down turned mouth shape. And as someone said yesterday, you don’t smile much when looking in a mirror. So self

portraits often seem a bit sad, miserable, angry or lonely.

No wonder Vincent cut off his ear.

I am not, however, miserable most of the time. And I don’t think much about my future. I can do little about it. What will be will be.

But we are all different. Hugely.

What sparks a smile in one, may open a dam in another.

If you fear death you are likely to think about it more than if you accept death as simply an inevitability.

If you fear losing your faculties and imagine it will be like torture imprisonment, you will think about that horror more.

If you have been fit and healthy mist of your life and you suddenly see that being stolen from you, you will be miserable at times.

This is not to say, accept everything that happens to you as just, well, life. We cannot help having hopes and fears and feelings.

For people living with dementia there are traps all around and in front of us. And we simply never know when the jaws will open and bite us.

So remember, those of you who meet us and talk with us, or paint or draw or sew or cook or carve with us…be ready to lend us an arm to lean on. Watch out for the signs, the morse code messages we send out.

Our faces may not signal any change, but our silence might.

Laughter and chuckles can change like thunder and lightning, in an instant. A word, or a thought, or a look, or a memory…can just trigger that flash that disables us.

Our brain disease attacks our defences and our resilience. We can cry at the slightest twinge of …what? Something. Anything.

We cannot always ‘pull ourselves together’. We twang between elastic extremes of euphoria and grief.

We usually bounce back, but it takes time and, often, silence.

Kurtz was overwhelmed by ‘the horror’ in the heart of his darkness. We can be too.

And we each have our own unique darkness and horror to face.

Luckily it doesn’t happen too often. But be ready.