It’s not just about memory!

This is a talk I gave yesterday at a conference entitled 3D Research: Dementia, delirium and Depression, in Stafford.

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I was diagnosed with mixed dementia three and a bit years ago, aged 63. I had asked my gp to refer me in both of the previous two years, but he had refused on the grounds that there was no point because there was no treatment or cure. The third time my wife and I insisted.

Having an early diagnosis of young onset dementia made sense of my recent life. Increasing confusion, occasional disorientation, tripping on steps, forgetting things, being unable to see things in front of me when searching for them.

Having a diagnosis also meant that my wife and I could plan for later years, by doing powers of attorney and separating our bank accounts.

And we bought an elderly camper van and toured France one summer. Something we had originally planned to do after my wife’s retirement in a few years.

Most people don’t imagine I have dementia when we meet for short periods. I can have good conversations if I control the subject. I just find it hard to answer questions or comments I’m not expecting. I have to tune in to a subject to find it in my brain. I guess I’m finding new neural pathways, which takes time and effort and sometimes they don’t work. It can be very tiring.

Getting a diagnosis has also brought me to meet lots of new friends. I’m not the only person living with dementia to see it as a sort of blessing in disguise. At least in the earlier stages. We’re a bit of a community. We understand each other. We support each other.

I have started two peer support groups in Shropshire, under the flag of DEEP, the Dementia Empowerment and Engagement Project. There are nearly 90 of these groups around the country. They are usually small groups of people living with dementia, sometimes with family carers, sometimes without, who meet in a cafe or pub for a chat over a cup of tea or a pint.

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My preference is not to have family carers present. I have seen plenty of occasions when the person with dementia never gets to finish their sentence because the carer jumps in. Or when the carer makes the choice of drink or cake, on the grounds that “she always has that”.

And I have a lady who comes to our Shrewsbury group who after four meetings on her own now says whatever she wants, puts her own copious amounts of sugar in her coffee, and laughs a lot. And of course tells us that “he never lets me do that”.

We become very quickly disempowered and infantilised. We need time to get our thoughts out, and paper and pen to write things down before we forget them. We might spill things sometimes, but so do you. We might choose to wear some pretty wacky clothes, but what’s the harm? We might even eat unhealthy food! Well what on earth does it matter?

What matters is that we go on making our own choices, that we live as we choose. That we meet others, have a laugh, get on the bus, do what makes us smile.

Last week three good friends stayed with my wife and I for a few days. We had a staycation holiday at home. With three dogs as well. I’m still reflecting on how they saw me, and how I managed the situation.

I don’t have an image of myself as a person who’s confused or irritable, who needs to clear the decks. I wonder what others see when they are with me for days.

I didn’t manage the situation well. When your brain slows down, and parts really work pretty badly, it’s hard work processing the incoming data. The textbooks describe it as too much stimulation. To me it’s noise. Just noise.

I can cope with it for a day, maybe two. But then it just wells up and up.

It’s the noise you hear when a radio is badly tuned. It’s the noise you hear when lorries and cars and motorbikes with holes in their exhausts drive past on busy roads. It’s the noise that makes me take my head in my hands and scream. Because I can’t cope with it. It screams in my head.

Noise from emptying the dishwasher. Noise from dogs barking. The kitchen cluttered with glasses, wrappers, plates and food, when I’m trying to think through the sequence for cooking the meal.

And people saying things that I can’t quite catch because I’m not tuned in. And I have to ask “what was that?” Several times.

You know the glottlestop? That is a really undervalued part of language. When you’ve got failing hearing, and your brain can’t process stuff quickly, absence of glottelstop is a disaster. It turns English into a foreign language.

Same with plosives and sybillants. Words are no longer words, just sounds that I can’t cue into.

Forgotten becomes forgo…e. How much do you want becomes How mu d y wa.

And there is no finer way to irritate your partner than to continually ask her to repeat what she said.

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The biggest unmet need is for Peer Support. People living with early to moderate stage dementia get almost no support. I worked out a couple of years ago, for the NHS Citizen project, that no more than 5% of people living with dementia in the community get any real, meaningful support. They may be visited every few months by an outreach nurse, but that isn’t the support that makes their lives better. It’s more to do with risk management by risk averse mental health services.

Oh George, are you sure you should be doing that still? Perhaps you should do less now. Avoid getting tired. How do you find getting dressed?

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Sorry, what we want is friendship, chat, exercise, brain activity, fun. And by brain activity I don’t mean organised games, and facilitated cognitive stimulation. Nor Dementia cafes inhabited by later stage people.

We want stage specific groups of our own choosing. In our everyday localities and communities. Meeting people who become friends who share our experiences.

We want to join in activities with everyone else. Go for walks or go singing with able people who have a little understanding but who treat us like just, well, people.

These things are not expensive to organise.

Lastly, I read more and more that people living with long term conditions should have an agreed, shared living plan. It’s actually usually called a care or management plan.

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I asked my GP a while ago about this, and he turned the computer screen towards me. That’s it, he said, ie my summary Care record. My current medical conditions, medications and allergies. That is not a living plan.

My Community outreach nurse sometimes sends me a printed template document after our meetings which is called a plan. But I haven’t contributed to it. It’s what she has said.

When oh when are we going to put the person at the centre of everything we do?

When are you going to ask “what matters to me?”

One last plea…

It’s not just about memory!

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The service that diagnoses dementia, or as I prefer to call it, brain disease, is called the memory service. The memory service.

I and thousands of others run Dementia Friends information sessions where one of our key messages is that Dementia is not just about loss of memory.

We must stop perpetuating this myth. Everyone with a brain disease has different symptoms, different changed behaviours. It’s about disorientation, fatigue, word finding, sensory changes, visual confusion. It’s not just about memory.

Please please please change the name. I know you think people will be frightened if they are referred to a Dementia service. But we need to call dementia dementia, not hide it away.

We call cancer cancer nowadays, and people are a little less frightened of it.

Let’s get Dementia out there, so everyone knows about it. We need our communities to accept and understand dementia. And to enable people living with brain disease to continue to live as well as we can and however we choose.

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We need to talk about…Peer Support

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There’s a lot of talk about Peer Support at the moment.

The Q community is working on it.

There was a Peerfest” day in Wales the other day.

NESTA produced a report a few years ago analysing what works.

https://www.nesta.org.uk/sites/default/files/peer_support_-_what_is_it_and_does_it_work.pdf

And there are lots of other resources for learning about it.

So what is Peer Support?

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Wikipedia: “Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I like that.

Note the “or”. You don’t have to be a trained expert for peer support to work. Just need to have lived experience and a degree of emotional intelligence and self-awareness.

At the upcoming UK Dementia Congress in November in Doncaster, there are several sessions devoted to early stage dementia, young onset dementia, and what support people living with dementia want.

I am part of the DEEP network, which has over 80 peer support groups are ind the country. DEEP is Dementia Empowerment and Engagement Project. It’s fab.

And I have started two DEEP peer groups in Shropshire. ‘Cos there’s nothing else for early stage dementia.

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What do we talk about?

If you’ve ever been to a group of people living with dementia you’ll know that conversations are chaotic but huge fun. We drift in and out of conversations. We start sentences we can’t finish. We are totally random at times.

And the great thing is? It doesn’t matter a damn.

We talk about holidays and visits. The Memory Service or taking pills. Cakes and favourite foods.

We grumble a little sometimes about our spouses or families, how they choose our drinks and meals, finish our sentences, speak for us.

And we just laugh at the absurdity of it all.

Oh and we always have a ritual of checking the date of the next meeting, because we often forget. One of my friends emailed me late last night apologising for forgetting the meeting yesterday. Which wasn’t yesterday, but next week.

Happens all the time.

We all need iPads or tablets and to use those calendars! And reminders.

We help each other with smart phone or tablet difficulties.

And when we leave, after cake, coffee or tea, we are uplifted. Ready for the next s**t coming our way.

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“Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”

I’ve been at several meetings in recent months where I’ve promoted the idea that for early stage dementia peer support groups are the thing that really makes a difference. And that they’re cheap to run. And that basically unless there’s some nut like me willing to organise a group it takes a little facilitation time to get one going.

That’s cheap. It’s cost effective. It’s what we want.

Until you’ve joined one you don’t know how supportive a peer group can be. And you look around in Day Dementia cafes, diamond cafes, forget me not cafes…and think, oh god, not yet. I can’t stand those. I do not want to spend time with people with later Dementia, playing games and drawing.

Sorry. It just isn’t for us.

We want, no, we need to be out and about. Chatting, shopping, walking, drinking…whatever it is that makes us/you happy. That helps us get over the everyday little that happen.

The empty boiled kettle. The miserable feeling of loneliness. The lost screwdriver. The forgotten name. And the memory of what we once were and did but now cannot.

So let’s hear it for peer support. And if you do nothing else this year, lobby your commissioners to pay the small amount that a facilitator would cost for starting peer groups in your area.

Perhaps I’ll see you at the Congress. I’m chairing one of the sessions. Make sure you say hello.

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Its the job, stupid

Does dementia matter?

I am increasingly annoyed about why the majority of clinical staff do not see that caring for dementia is part of the job.

It’s as if… no, it really is that they are trained and developed during their working lives to do the traditional physical clinical work. To deal with the diseases and trauma they see every day.

So, pneumonia, cancer, prostatitis, back pain, arthritis, and everything else…these are what nurses, therapists and doctors do. They diagnose, treat, discharge.

And they’re really good at this. They’re professionals.

And they know and recognise that many patients have more than one condition. Multiple co-morbidities.

So for example, they’ll check blood pressure, diabetes, heart disease, and make sure the interdependencies and drug effects don’t conflict.

They’ll check that my eGFR is high enough to allow me to have an angina drug which might damage my kidney.

But it seems that the brain disease that causes dementia symptoms is not recognised as something they should know about and be able to react to and treat appropriately?

25% of inpatients live with dementia. But (I guess that) no more than 5% of staff really know how to provide appropriate care and conditions for them.

Oh I know that induction programmes for new staff will include half an hour on dementia, perhaps a short guide to the Butterfly Scheme.

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And there’ll be an e-learning module somewhere…which is a complete waste of time. No, it is counter productive, because it will certify that the staff member has done dementia training that year.

My acute trust says that over half their 5,000+ staff have had dementia training. Hmm.

Inpatients living with dementia stay in hospital for some 30% longer than others. They more often are discharged into a care home, because they have been disabled and infantilised by their stay in a ward, and because their capacity to adapt to living in a hospital is severely reduced, which impacts their recovery. And then discharge teams won’t take the “risk” of returning them to their homes.

The cost is staggering. The insult to those patients is appalling.

If all clinical staff were really properly trained, and if they all addressed patients’ needs related to brain disease, as well as their other conditions, there would be shorter stays, better health outcomes, and reduced social care costs. Not to mention improved quality of life for the patients.

But no, dementia is not what we do. We do diseases. We do traumas. Injuries.

Well… get real.

Dementia results from brain disease. Physical brain disease.

And it’s your job!

It’s not an add-on.

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It’s not an option, which can be ignored when times are difficult.

You can’t pick and choose.

Caring for someone, healing someone, is about the person.

You can’t cure the brain disease that causes dementia symptoms. Bu you can make sure you provide care in the right way for that person, and not in a single standardised way, the same for everyone, and good for no one.

If you ignored co-morbidities when treating a condition and your treatment killed a patient you’d be struck off.

So don’t ignore the brain disease.

It’s the job, stupid.

No cliff edges please

No cliff edges please!

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And I’m not talking Brexit.

I was invited to speak (with Rachel and Peter) about DEEP at the current Dementia UK conference for Admiral Nurses.

On my way up by train from my little market town, 8 miles up the line a very spruce young man sat down and got his laptop out. We all do it now. Tablet, laptop, phone…and like on tube trains we try hard to ignore each other.

But I saw this guy was wearing a 2million dementia friends badge, and the big blue outline forget me not, on his lapel.

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Well. I had to ask, didn’t I.

Turned out he was the Ops Director, local services, for Alzheimers Society. And he lives up the road!

What a lovely, enthusiastic man. Passionate about dementia (of course).

We talked. And he said he is keen to get local Alz Soc staff and Admiral Nurses to work together more closely. Which is also what I want.

Of course, there are organisational barriers to overcome. Charitable aims, money, brand, defensiveness…just like the NHS economy.

But for us, people living with dementia, when we need support we need continuity, ease of access, consistency in skill and knowledge and approach.

At the moment it seems that we have Alz Soc staff to give time limited support or information, in the early to moderate stages of the disease process. We also may get support from the local memory service staff.

God only knows why we still call it a memory service. It’s time to dump this falsity which perpetuates the myth that brain disease is only about memory.

Then when we become more severely affected, and our families suffer, we may have an admiral nurse to work with the family. If of course there are any in your area!

Needless to say, not in Shropshire.

So we have at least three different types of support. Each with different training, priorities, levels of risk aversion, and ways of engaging.

It ain’t easy, you know. Most of us are reluctant to ask for help till we’re desperate. Miserable, depressed, don’t know what to do…then we’re in entirely the wrong state to go out and find whatever is on offer. And to know which to approach.

Of course there are also social services and the GP, Age UK, dementia cafes…

We need simplicity and clarity, consistency of approach, non risk averse, personalised support, for us and our families to continue to live as we choose, doing what makes us happy.

And we want professionals who have good quality, up to date training, with easy access to other experts.

I see a huge benefit in Admiral Nurses working in the local health economy because their extra levels of training and experience and skills will filter out to other teams and services. It’ll cascade down. Bubble up. Spread sideways.

I’d like to see DEEP groups everywhere.

And Friendly Faces at “dementia services” when diagnoses are given.

https://www.bbc.co.uk/news/amp/uk-wales-north-east-wales-41265466

I’d like multi-disciplinary, community meetings with Alz Soc staff, Admiral Nurses, GPs, Dementia Service staff, Social Care/Services, where approaches and skills and experiences are shared. Where individuals can be discussed and approaches agreed.

Because, what matters is not the organisational branding, but the people affected by dementia.

We are who you exist for.

Ask us what matters to us.

We’ll tell you.

And once again, hats off to Dementia UK for creating their new user group, LEAP.

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Together we can.

Believe me. I’m always right. About me.

Believe me. I’m always right. About me.

I was listening this week to a radio programme about personalising health and social care for people…

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Reducing unnecessary hospital admissions…

Providing health care at home…

Treating people as capable of deciding how they wanted to live and deal with risks…

And I was electrified when I heard something that went like this:

“You’re always right about yourself. No one else can know how you feel, what you enjoy and fear, what makes life worthwhile. Everyone else is always wrong.

I may be meandering back to my theme of who knows best? Nothing about us without us, but I’ll pursue it a little further.

Professionals, i.e. people employed and hopefully trained to do specific jobs in health and care, are expected by us all to know stuff. We need to trust them with our lives and bodies.

Trouble is, these professionals have high levels of risk aversion. They fear allowing people like me to take risks with our lives.

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The example on the radio was of a person who was unsteady and frail, but who really did not want a Zimmer frame. And wouldn’t use it if provided. What do you do? You can’t just ship them into a care home! Nor should you.

What you do do is help the person in other ways to move around as safely as possible. A few little tips and tricks. Some exercises perhaps. And you let them get on with their lives as they choose.

Do you insist that someone stops having their gin or beer in the evening? Well, not if that is what allows them a degree of wellbeing.

But of course health professionals don’t like this. Understandably, as a result of their training. And they have to fight their instincts to stop this paternalistic behaviour.

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We want you to give us the appropriate medical advice and care choices, but you must let us decide whether we want to accept them. We must make our own choices.

Professionals, you may be able to look after us, but don’t impose yourselves on us. Don’t try to wrap us up.

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We probably won’t take stupid risks, any more than anyone else does. And they do!

But that’s our choice.

And remember, we are always right about ourselves and how we want to live our lives.

It’s our choice. Not yours. Please help us to live as we choose.

And please don’t design services for us which we don’t want.

Better still, provide services that we do want and value. Like peer support groups.

We are the Disrupters

We are the disrupters!

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You know, the thing about being a volunteer activist in healthcare is that it’s sooo frustrating.

There are various mantras around…

Nothing about us without us…

Do it with us not to us…

But we’re always fighting against an imbalance of power. Against a hierarchy where we are at the bottom, if even not in it at all.

We attend meetings where the agenda is set by the organisation, the hierarchy.

We make our points, we challenge, we suggest, we want to “work with” to get change.

And we’re told…

Well that’s not altogether true…

We can’t do that…

Our staff are sick of action plans, we can’t do any more…

Staff are sick of innovation and change projects…

So we are squashed into submission, because of course we don’t have the power.

Most healthcare (and other) organisations are old power hierarchies. They do to people. They hand down directives and projects. Managers are trained to follow project management techniques scientifically.

They communicate with very few people. Just those staff who immediately above it below them in the hierarchy. And they all perpetuate their version of reality.

And they really don’t like people disrupting their hierarchies.

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So when I (or another disrupter) come along and challenge them, what happens?

They say you can’t possibly be right because you don’t have the knowledge that we have.

They say they won’t listen to you because you don’t represent anyone but yourself.

They decide that if they ignore you you’ll go away.

And they continue to maintain their closed loop hierarchy, in which they are cocooned away from divergent thinking and creativity.

Because they know best. They hold the old power.

I went to a meeting if a new group for people with lived experience of dementia last week, set up by the organisation to get feedback and suggestions on how they can improve the services they provide.

Quite a bold move, with quite significant commitment of funds for one or two years.

I applaud them. Bold and open…

During the day we split into two groups to discuss the agenda items they had decided for us. One group of family carers and one group of people living with dementia.

First they wanted to know what we thought of their service. But we hadn’t experienced it, because it’s for families where the dementia is advanced. So we said actually we don’t know really what you do.

Then we were given four statements which their execs wanted us to talk about in coming meetings. Which would we prioritise?

That’s where things fell a little apart. Because those statements were based on a consultation premise, not a co-design premise.

We said these are not where we would start. They needed to be re-framed…by us.

We’d rather start with…what matters to us? Not…what matters to you?

And it became very clear that we were disrupting the process.

In fact we rejoiced in calling ourselves the disrupters.

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I have found, with real pleasure, that almost all of the people living with dementia who I ever work with are disrupters. We promote and constantly remind…

What matters to us? Don’t did it to us, do it with us.

And we use our networks, which cross all sorts of conventional boundaries, to spread that belief and commitment.

We don’t have much of a hierarchy.

(There is a bit of one, with too few people being asked too frequently to be the person with lived experience. But we’re starting to change that.)

We depend for our energy and continuing activism on our networks of support. Facebook, twitter, blogs…that’s where the new power is growing. The occasional face to face get togethers are the invaluable glue which binds us together and re-energises us when we feel beaten down by the old power.

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So we are the disrupters.

Have a look at this slide set from the wonderful Helen Bevan, about disrupters and old v new power.

https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2016/09/improvement-transformation.pdf

And watch this TED talk too.

I’ll end with part of a slide from Helen Bevan’s presentation:

WHO will make the change happen?

• The mavericks and rebels
• The deviants (positive). Who do things differently and succeed
• The contrarians, because they can
• The nonconformists who see things through glasses no one else has
• The hyper-connected. Good or bad, they spread behaviours, role model at a scale, set mountains on fire and multiply anything they get their hands on
• The hyper-trusted. Multiple reasons, doesn’t matter which ones

Source: adapted by Helen Bevan from Leandro Herrera

What matters to us?

So yesterday we had our monthly DEEP meeting in Shrewsbury. Just four of us, but a great opportunity to chat and joke and chew things over.

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And one of the things we talked about was a group that meets bi-monthly in Shropshire and Telford to oversee the development of dementia care/support. A steering group. And on it, for the last three meetings, we have had three people living with dementia…including me. The rest of the group is professionals in health or social care working in the area.

A few months ago the group agreed that we should have more than just me representing people living with dementia, so I invited in two from our DEEP group. And they’re great. Keen to participate, keen to share their experiences, keen to say what matters to them.

Only trouble is, and I’ve found it elsewhere, the professionals don’t know how to include us.

Now I know the system, the NHS, and most of the people around the table. My two colleagues do not. And they cant think and decode and formulate ideas as quickly as the others.

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Now DEEP has very good rules of engagement for these meetings where people living with dementia are involved. Speak slowly, be as visible as possible, be loud enough…don’t interrupt or speak across others…and use cards to signal you want to speak.

We didn’t do any of these! So guess what…my friends said nothing and didn’t understand half of what was said.

I would add, for fairness, that they were offered support from someone sitting beside them to explain things, although the meeting did not slow down during this. And there is a standing offer of an hour’s training and introduction before meetings. But this has not been taken up. They probably don’t remember! And I’m not sure that I’d want to give up another hour to be talked at about what is about to be talked about.

So what are we going to do about this?

Well, we talked about it yesterday and I found out just how strongly the other two really feel…like they’re there because a rule says they have to be there, like they’re ticking a box…like no one actually wants to hear them.

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So I think next time we should start with the question “what matters to us?”

What matters to us in the meeting? What matters to us in our lives?

What do we want that is not there?

But we’ve already decided that.

DEEP groups matter to us.

We’re not far on in the disease, so what matters is the opportunity to talk to each other, without our family present, about how we feel, what we’ve done, how we cope with things…because the worst thing is losing your confidence to go on doing what you want to do. And to be you.

Caregivers often finish our sentences. Or choose a menu for us. Or answer questions before we can summon an answer. That saps confidence. It saps your being. It reduces you.

Being around other people at a similar stage is incredibly helpful. It recharges you.

But there are so few groups.

We need a group in every town. Where we set the agenda. Or probably don’t have an agenda!

It’s incredibly cheap to make these happen. But they need someone to organise them.

Easy win for retaining independence, community involvement, and living as well as we choose.

And probably delaying use of health and care services.

At the next meeting we’re going to make sure they ask us and listen to us. And that we set the agenda for our health care and support.

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That way we will get the support we need, rather than what professionals want to give us…or endless apologies for not being able/willing to afford services.

Above all though, don’t invite us and ignore us. That really is insulting.

You don’t mean to insult us. You just don’t get it.

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Something different…it’s about you!

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When does fun(draising) spill over into sexual objectification and exploitation?

And what does objectification mean anyway?

Recently you may have read about the Chief Exec of a Shropshire NHS Trust refusing to accept £2,500 donations raised at an annual bed push in Ludlow. The reason? The men pushing the bed were dressed up in drag as nurses.

They were of course no ordinary nurses. They were pantomime nurses, yes with bra or lace or short skirts, etc. Silly wigs. Heavy makeup.

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The CEO thinks this is demeaning to nurses. Local Shropshire people disagree (96% in a poll).

So I was minded to meditate on this. Or philosophise. Or something.

By the way, the money was to go towards an ECG marching in the community hospital, and the event has been help annually for twenty years.

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…….

Is dressing up as a pantomime nurse an insult? Or demeaning?

Is it demeaning of the person/role that is derided?

Is it implying a stereotyped sexual attitude?

Is it humiliating to the person/role that is portrayed?

Is it about suggesting that every person working in the nurse role portrayed dresses and behaves like the men in drag?

I think in this case the objection to men dressed as caricature nurses must be that they lead us to believe that all female nurses are like these portrayals? Unkempt, ragged and a little skimpily dressed, joke characters to be taken as jokes.

Well, if the sight of men dressed as caricature nurses makes you think all nurses are like these you probably already have an excessively warped and misguided view of female nurses. I don think a bit of drag fun isn’t going to warp you!

……..

Is humour that uses stereotypes acceptable?

What about the mother-in-law jokes?

Or the chartered accountant Monty Python jokes?

(I admit that I was training when those jokes were around and they made me cringe with embarrassment. I was determined not to be boring and silly. Not sure if I succeeded.)

What about the carry on films, and the pantomime characters?

Perhaps you are demeaned if you feel demeaned? But lots of personal history and experiences go into how we react and feel about things we see and hear. So that’s highly subjective and unreliable as a test.

Does a man dressed as a woman demean the woman? (Or perhaps the man?)

I think one test is whether the portrayal is caricature or realistic?

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If it is caricature, it is obvious and visible, and not subtle or subversive. Caricature is usually comic, and often designed to make a point, usually critical. It has one of two purposes…either to make you laugh or to make you question something.

If the portrayal is realistic, it may be designed to deceive you into doing or thinking something.

In other words, if it’s realistic how do you know if it’s true or false? If it’s caricature you know it’s not deceiving you because it’s obvious,

There are some cultural stereotype jokes in every society. They are frequently found in pantomime and stand up comedy. The buxom, bossy mother in law, bronzed medallion man, sexy nurses, officious traffic wardens, and many more.

Should we outlaw these as incorrect and unacceptably demeaning? Or laugh along?

Do these jokes make us behave adversely towards these stereotype roles in real life when we meet them? Perhaps occasionally.

Do the jokes make the people actually carrying out these roles feel upset or angry, and make them change how they dress and behave? Perhaps occasionally.

Should we therefore make use of stereotypes for humour unlawful?

That would stop legitimate ways of criticising the behaviour of politicians, businessmen and others through humour? Should we ban cartoons, novels and films that use caricature and humour to highlight and criticise?

I think not!

There will always be people who are offended by others, by jokes, by cartoons, by stories, by behaviours. Perhaps because they have raw personal experiences and feelings that are touched. Perhaps because the implicit criticism is a bit too close to them for comfort.

Fundraisers use lots of ways to attract attention and therefore money. Sitting in a bath of baked beans, having wet sponges thrown at your face, dressing up as clowns or… nurses?

Are drag artists insulting to women? I think not. You don’t have to like them or enjoy their acts. But if you feel insulted by them I think the problem is yours not theirs.

One last thing, is this offensive?

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Find the point!

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I think I’ve written before about surrounding yourself with people who are positive and make you feel good. And keeping away from negative, miserable rudery.

Well.

I’ve been a bit down for a few weeks, on and off. You might have guessed.

My various illnesses get me down at times. And then another chip comes away, usually a piece of tooth.

Yes. I was having an Indian. They left a bloody stone in an olive or something in the spicey stuff.

A quarter of a tooth broke off. Again.

Turns out to be £620 crown work needed.

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Again.

I’ve spent thousands on recent years just keeping enough tooth and metal and porcelain in my mouth to be able to eat.

And it just adds to the growing and daily depressing list of things to put up with.

But, as a GP once said, what can’t be cured must be endured.

Yeah. Thanks for that. You may be right, but it doesn’t help a lot.

So, yes, it gets me down. And it probably gets you down too.

So I’ve been working slowly towards doing what we all should do.

A plan for living well. For coping. For making life worthwhile.

So the other day I sat down for an hour to start scribbling.

I’d taken Lupin for a nice gentle, warm walk around nearby fields.

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Watched and photographed some ploughing. (They took the rape off last weekend.)

Let the dog run wildly around, leaving a dust cloud behind her. Racing pointlessly around after…who knows what?

……..

Where, then, do I start?

What gives me real pleasure?
What stops me from doing these things?
What can I do to make it possible to do them?

What do I absolutely need to do?
What is inescapable?
And which do I actually have a choice about?

What do I want to do before I die or become incapable?
This year?
Next year?

What do I do that I don’t enjoy?
Why do I do these things?
What would happen if I stopped doing them?

……..

So I’ve made a start.

The next stage is probably harder. Actually stopping doing some of the things.

Thus, for example…

What will I lose if I stop being Chair of the DAA?

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What will I lose if I stop chairing the acute hospital patient panel?

And what will I gain, of course?

It’s a really intriguing position. Because I’m scared of being lonely and unneeded, and being at home thinking…if only…

But I need to do what gives me pleasure. And makes me get up in the morning with a smile of optimism.

I’m not going to share what I wrote down. That’s private.

But you should do this. And sort out what’s left of your life.

And enjoy it.

Life’s too short to be dull, to do things that drain your optimism, that make you depressed.

And that make you think…

What’s the point?

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Who am I without my name?

 

“How may I live without my name? I have given you my soul; leave me my name!”

Thus spoke John Proctor in The Crucible.

“Who am I without my name?”

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Am I my name?

Am I what people think of me?

Am I my reputation?

Am I what I own? Where I live and what I drive?

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Or am I what I think and what I do?

Cogito ergo sum. I think therefore I exist.

Am I what I say? Do my conversations define me?

In which case, who am I when I can no longer find words and put them sensibly together?

 

Who am I when I lose control over my life?

When I can’t make decisions?

Or when they are taken away from me?

Who am I then?

Do I cease to exist when I am unable to decide what I want?

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What makes humans different from other animals?

I think it is that we can think about more than just self. More than survival.

And we can engineer things, create ways of doing things, ways of improving (?) our lives.

We have language. And with words you can think things that you can’t think without words.

You can empathise. Imagine. Explore. Create magical feelings…with words.

You can think regret, or relief, or joy, or anger…

You can dream of things you might do, mountains you might climb, people you might hug, sights to see, seas to swim…

I’m no philosopher, but I wonder if without words you can still dream, imagine, explore, feel…

I think you can. And I think later stage dementia is about feelings without words.

I’ve already, recently, had an experience of total brain fog…blank…whiteout. And I assume that it is what happens in later stage dementia. When parts of your brain really don’t work.

Brain failure, as Alastair Burns puts it so well.

It seems to me that there is good evidence that happy experiences improve both the mood and the behaviours of people living with dementia, even though they may not remember the events.

That is the theory behind reminiscence, activities, singing, etc.

These things change behaviours, calming people for several hours.

They may not have words at that stage, and they may be in a fog, but they feel better, happier. So they get less agitated, angry and frustrated.

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So, to return to the beginning, who will I be and how will I feel when I can no longer find words and make decisions?

The answer, I think, is that I’ll rely on other people to take me to places I can no longer find.

But in the meantime what I ask is that you don’t take away from me my decision making until I really can no longer do it.

Let me make mistakes, and misjudgements, unless it’s dangerous to other people.

I don’t want to live in a bale of cotton wool, feeling nothing but safe and sound.

I’d rather fall off a cliff, or drown, trying to do something that makes me feel good, than live to a ripe old age, waited upon and wiped clean, lost and wordless.

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Someone said to me the other day that the early stages of brain disease must be worse for the person than the carers, but the late stages worse for the carer, because the person living with dementia won’t be aware of anything.

I wonder.

If you get agitated and angry but can’t express it in words, it must follow that you don’t need words to have feelings.

How long do you continue to have words in your mind after you become unable to say them to anyone?

After all, advanced dementia is not persistent vegetative state. If you can display feelings through behaviour you are not in a coma. But you are trapped.

I think we are mistaken if we assume that a person without words is a person who is unaware of their situation, or is a person who has lost their right to live with dignity, compassion, and warmth.

And I think that people with advanced dementia are still people who deserve and need our respect and support.