Get inside my head please!

Interesting zoom discussion yesterday about activities for people living with dementia. Memory cafes. Care homes. Deep groups. Any groups.

Why is it that people without dementia think that people with dementia have to have activities planned and provided for them?

Hmm.

So, the good reasons might include…

Brain stimulation is good. Helps to retain skills and thinking processes.

Games are fun, and fun is good.

They will enjoy doing these things, won’t they!

Again, hmm.

Less good reasons are…

We think that we know best, what is good for you.

We can’t ask you what you want to do, because you cannot think or communicate.

We are professionals who know best.

We are paid to provide activities, so we provide them.

There is obviously nothing going on inside your head, so we will provide something for you to think about.

We can’t stand not doing anything to justify our existence and just sitting there.

….

Good intentions all round, of course, and I am not writing this to bash people over the head.

I am writing this to tell you, We Are Still Here!

….

Take the classic stereotype of people living with dementia. They sit and stare. They cannot feed themselves. They cannot speak. They cannot recognise anyone. They suffer unspeakably.

You and I both know that this is a complete lie, concocted and promoted by media and reporters who are too lazy and uninformed to find out the truth. By uninformed fear and prejudice.

Yes, we may well suffer, from time to time, as dementia is slow death, a journey from healthy brain to diseased brain to death. As is all human and animal life. We will have bad days, aches, pains, upset, despair, illness, trauma, loss…just as you will. This is normal. This is LIFE.

Yes, we may gradually lose the brain connections that enable us to use our hands in a coordinated way to lift food to our mouths and swallow it.

Yes, we may lose the brain connections to find words and memories.

But all my experience tells me that people with dementia actually know the words, they just cannot quite say them. People say, I know the word but I can’t just say it. And this means they are still thinking that word, and the meaning of that word. It does not mean they cannot think.

This is really important.

We often believe, emotionally at least, that silence is difficult, or embarrassing. If we are in company we should talk. And if we are not engaged in conversation we are somehow not present.

But plenty of people will tell you that they get immense pleasure from just being with someone, without any words being spoken. Because they have emotionally pleasing thoughts, or unspoken words, related to the person they are with.

This must be one reason why people in care homes with advanced dementia get great benefit from visits, even though they may not express any understanding or recognition at the time. Their mood and sleep improve afterwards, unless the visitor was an unwelcome one!

When I wake up in the morning I don’t immediately start to talk. What is in my head? Dreams. Thoughts. Feelings. Physical stimuli from the bed clothes, or an aching hip, or a wonderful brightness after a good sleep or a good dream.

The fact that I don’t tell the world what I am thinking the moment my eyes open does not mean that I am not thinking those thoughts.

So why assume that a person with dementia who has lost some power of communication and cannot find words to speak is not still thinking and very much alive inside?

It takes empathy, understanding and patience to know someone.

There may be periods of silence, perhaps long, where just sitting and looking seem to be all that are going on. But you must know that inside that brain opposite or beside you there are thoughts and conversations and journeys and memories, pleasure and pain. You can share these by just sitting and being there.

We do not need word searches, singing songs you choose, picture books.

We do need physical activity, and opportunities to see and smell and feel what has given, and still does, give us pleasure.

Dementia results from brain disease. We may well live with that brain disease for thirty or forty years. The symptoms may not become apparent for twenty years. They will appear, bit by bit, over years usually, and they will be different in every person.

A diagnosis does not change us. It reassures and frightens in equal measure, but it does not speed up or slow down our disease. It does enable treatments for some types of disease which can help enormously. And it enables us to look the disease in the eyes and say, I am still alive; you’re not having me yet.

Wherever we are in our journey with brain disease, we are still who we are. We still enjoy what we enjoy. We want to continue to do what gives us pleasure and what makes getting out of bed worthwhile.

It’s what I want that matters to me. Not what you think I might want or need.

Ask me. Find out about my life. Ask my friends and my family what I enjoy.

Don’t think you can ever know better than me what I enjoy and what I need.

Your job, paid or unpaid, is to help me find opportunities to do what I enjoy.

NOT sit in a circle in a church hall, facing people I don’t know, singing a song I don’t like, or doing a bloody word search.

Unless I actually want to do that. And I don’t.

Dear Friends…be a craftivist!

An open letter to Shropshire DEEPers

Dear friends, as you will know, the government is changing the rules on gatherings. Understandably.

So, as we are bound to be more than six in number, I think we have to be responsible and not gather. I don’t feel happy getting round it by dividing into two groups, as we will inevitably mix and change the groups.

I also, like many others, do not want to put at risk my own health, after seven months of isolation. If any of you want to gather in a tiny group that is up to you. But I cannot organise a larger gathering.

I do urge you all to try to join our Friday Zoom meetings. They provide a chance to just chat and share feelings and what we’ve been up to. I will send out the link as usual tomorrow or Friday morning.

Without wishing to pontificate, it does seem that, as predicted by many, this virus thing will be with us for a long time, and a vaccine will not be available till well into next year. So I believe we just need to hold tight, try to find ways of doing what gives us pleasure, and keep safe.

My greatest concern is for those in care homes, and their families, who cannot have visits. If only quick testing – any testing? – were available it would be completely possible. Sadly, we are not there yet.

I know that a good number of other deep groups across the country have started to meet outside now and then, for walks or picnics…I suspect they will all be having to stop these now.

It’s not necessarily us oldies who will carry the virus to each other, and I don’t entirely blame the young for feeling unable to comply…well, I do blame some that are out and out Flouters…But however it comes to us, we are far more likely to be seriously ill or die. It makes sense to take responsibility.

Looking on the bright side, searching for that silver lining, it is an opportunity to break from our habits And routines and find new ways of living and enjoying living. I certainly have done this, and when I went to the dentist last week felt very happy when I got back to my little domestic bubble at home. I can do almost everything online. Save fuel…I have only filled my little care twice in five months, for my daily dog walk two mile drives.

Winter will be more challenging, at least for me. I love being outside, and dark early evenings and mornings will be hard. But the wheel turns, and after a winter rest I will be out with my seeds and spade again before long. I love the changing seasons that we get in the UK. Watching the changes, leaves growing, turning yellow, and dropping. Collecting them, making compost, then using it next year. Waiting for the spring return of birds. It’s great. Im lucky to live where I do, but most of us can get out if we choose to.

There is growing evidence that being out in the natural world has a hugely beneficial effect on wellbeing and contentment. Even if you have to do it on your own.

I am continuing to learn to carve. My latest project has been to carve sunflowers on split logs or branches that I find on my walks. I’ve done ten now, and will be sending them to a few friends in deep groups around the country later this week. I write this mot to show off but to show that we can all learn a new skill, regardless of age and illness. It’s just a question of finding what you enjoy doing, and what is practical, in your own circumstances.

I nearly wrote sensible! Oh, let’s not be “sensible”!

I am helping to lead a DEEP project Called “Craftivism”. A small (at the moment) group of us are using our crafting skills and pleasure to make or create things that we will share or give to others. It’s a cross between activism and crafting. We do it to show to people that dementia does mot mean we cannot do anything. Dementia does not diminish us. We can still learn and create. We want to break down the myth that a diagnosis leaves us incapable and written off.

The things we are doing include: whittling whistles and carving things, making intricately designed cards, making face masks, creating hanging baskets from bottles, making (wait for it) fairy houses from logs and stones and shells, painting stones, water colour paintings, cooking sour dough bread…

I know each of you has something in you! Either a skill you already have, or something you could learn to do. And you can find hundreds of great guide films on Youtube which will show you how to start and learn to do something. Whatever you think of…there’s a film!

Give it a go. And then we could all be craftivists in Shropshire. I even have labels that we use…as you will see in the latest DEEP news that I sent out earlier this week.

So, friends, keep going in these odd and often difficult times. Don’t forget the Admiral Nurse helpline, if you are getting to your wits end.

0800 888 6678
Open 9-9 weekdays and 9-5 weekends.

Good luck and keep safe.

Imprisoned in lonely, horrid death

I read today that in the UK 25% of those who died from Coronavirus did so living with dementia.

Hmm. I wonder what Alzheimers Disease International (ADI) is trying to achieve in publishing this figure.

Why would we be surprised? Many people living in care homes, over the age of 75, love with dementia. Care homes, as we now know, received patients from hospitals in March and April who had not been tested for CV19. As a result, some care homes saw large numbers of infections and deaths. Others, who refused these discharges, have had no infections.

CV19 has caused higher mortality in people over 65, with underlying health conditions, and with diabetes. Well, guess what! Many of the people in care homes with dementia have underlying health conditions. Multiple conditions.

I can see that it was disastrous and unforgivable to discharge patients without tests. But I do not see that people living with dementia have had a more unreasonable time under CV than others. We have all suffered, young and old alike.

The trouble is, if you live with dementia you need social contact and activity to keep you going, for your wellbeing.

A huge issue now is that care homes are refusing visitors. Perhaps this is because they fear the reputational damage that might result from in home deaths from covid. Perhaps they have massive risk aversion on behalf of their residents. And – no perhaps here – they do not have the test kits to allow residents, staff and visitors to be tested. Despite Matt Hancock’s promises.

But denying visits damages at least two people…the visited and the visitor. I know of the wife of a person with dementia who has been unable to visit her husband since early March. She is both upset and angry. Her husband, whose dementia is quite advanced, depends on daily face to face visits, lots of time to talk, do things, understand, make contact through the fog of dementia.

And there must be many thousands around the country like this.

My worry is that ADI’s published data will make care home managers and owners more reluctant to allow visitors. And families may feel less willing to demand visits, for fear of passing on the disease.

Freely available testing would get round this. So, Mr Hancock, please get this done now.

Secondly, let’s not forget that people die. Of course they die. And care home residents are no less mortal than anyone else. Indeed, by definition, their time on this earth is limited, perhaps short.

We should not, must not, cause those final days, months, years, to be miserable, and indeed hasten death, by pretending that life must be preserved at all costs. Wellbeing is crucial to physical and mental health, no less so for people loving with dementia than anyone else.

So what if a person dies a few weeks or months earlier – than what? – if they are happy, contented, loved…and feel loved.

Ask us, living with dementia. Don’t assume, from your professional, risk averse life without dementia. Ask us.

What do we want? What do our families want?

And don’t, for God’s sake don’t, assume that our diseased brains mean we don’t have capacity to make choices. Some of us will lack capacity, either temporarily or permanently, at some stage. But assume we CAN make decisions. Even if you don’t like our decisions, or think we are taking unnecessary, inadvisable risks.

Our lives are OUR LIVES. We have fundamentally human rights to live happy, fulfilling lives, and family lives too.

You do not have the right to take that away and imprison us in horrid, slow, lonely deaths.

Cancer with dementia. Annoyingly wrong…

Yesterday I was asked to review a leaflet for patients using a cancer treatment centre, who ‘suffer from dementia or learning difficulties’.

Yes, of course, my local NHS Trust. Bless them. It was awful.

Not helpful; in fact it raised more questions than it answered.

Very poor photographs.

Text had no headings; all same font size.

Photos had captions in the wrong places.

The changing room looks like a prison cell.

It was intended to take people through their visit so they would know what to expect. It did not.

What, after all, is a CT Scanner? What does it do? Why me in that?

The cancer radiotherapy machine looks like a huge robot. (It is, I suppose.) Frightening.

And of course signage? Same old NHS signage. Small. Hanging from the ceiling.

Toilet sign the same.

Reception desk and table a confusing mess of bits and pieces. What is it? Where do I go?

And, mark you, I did a tour of the place eighteen months ago and listed all this stuff with the manager. What’s happened since? Nought.

Except a new, big sign outside the entrance. Full marks for that. Only that.

The Trust has of course signed up to the Dementia Friendly Hospital Charter. Little sign of its impact here.

Should I be more tolerant of the Trust? It’s in huge difficulties…mostly of its own making. No. I should not. We should not.

Anyway, this morning I lay in bed and suddenly realised the absurdity of the situation.

If you have cancer you have this expert facility to provide you with treatment. You have fully trained expert staff. You have back up support for psychosocial and financial difficulties.

If you live with dementia and get cancer you get treatment for the cancer. From people who do not understand your brain disease.

You will not palliative care for your terminal brain disease. You will get palliative care for your cancer.

And unwittingly I have helped perpetuate this, by helping an NHS cancer treatment centre provide cancer treatment for people living with dementia.

It’s something I cannot quite get my head around. Something lurking in my mind, which seems totally wrong, but which I cannot quite pin down in words.

It feels like being a prisoner and helping the gestapo to wrote a guide for prisoners of war about how to make food and water go further and last longer.

Just somehow wrong. Annoyingly wrong. A good thing to do, for the wrong people.

Venturing out of my isolation today, to my GP for a blood test, and to the vet with Lupin, I find myself annoyed again by what I find. GPs did not provide masks or hand sanitiser at the entrance or inside. The vet did.

I listen to radio 5 and hear about testing, tracing, schools…the lack of human decency, efficiency, and a PLAN for God’s sake.

So I return to isolation. Bugger them all!

Craftivism

Craftivism is a form of activism, typically incorporating elements of anti-capitalism, environmentalism, solidarity, or third-wave feminism, that is centered on practices of craft – or what can traditionally be referred to as “domestic arts”. Wikipedia

“We believe craft can be a tool for gentle activism. Join us, together we can change our world, one stitch at a time…” Craftism-Collective.com

I found out about Craftivism a few weeks ago. I have described myself as an activist for several years, working within the system and without it to improve the care and support provided for people living with dementia.

I was diagnosed six years ago, and had already become engaged locally to work with NHS Trusts and CCGs as a patient volunteer or representative. I did loads of meetings and saw very little change for the better.

Then dementia found me, and I found DEEP. This was eye opening. I regard myself as a disruptor, as I don’t like following the traditional, controlling rules of engagement, governance, status quo, and publicly supporting organisations I fundamentally disagree with.

So I have been a disruptor, blogger, activist, whatever, for a decade. And what have I achieved? Some raising of awareness of dementia and other patient care issues. And very little change. And I have had enough of most of it.

So along comes Craftivism. As I understand it, though I may not be right on target, craftivism is about creating crafty things, making, painting, printing, drawing, sculpting, carving, and using these things to speak for you. To gently promote what it is you want people to know or understand or do.

Great example: the old fashioned Banners made by a number of DEEP groups up North (duck) which illustrate an aspect of dementia, but are just beautiful artistic creations. They don’t shout, or stamp, or sit in meetings. They just exist for their own sake. And they speak louder than many words do.

I suppose they ought to sit in meetings actually, all around the walls, to remind decision makers that we exist!

So some of us crafty people in DEEP got together, or rather were brought together, to see if we might become craftivists ourselves.

One of us paints beautifully. Another is just ridiculously good at crafty things like card making, embroidery, carving, bookmarks, and making fairy houses/villages from largely found materials. I have taught myself to whittle and carve whistles of all sorts and sizes, with personalised designs or images.

We are starting to make artistic or crafty creations to give to people, to publicise our message. We may leave things in public places, libraries, shops, on benches, in parks. And we will add a label or inscription that says something like…

‘You’ve found a gift made by a person living with dementia. Enjoy it or pass it on to a friend.’

Simple as that. Nudge theory perhaps, though Dom has nothing at all to do with it. Gently letting people know that dementia does not incapacitate you suddenly. We can still learn skills, make lovely things, and give and have pleasure. We do not all sit and stare at a TV or the wallpaper, dribbling, immediately after our diagnosis. Or probably ever.

So I am thinking of making some simple whistles to give to a local primary school class. I could establish a real rapport and understanding on and with these children, and they would take the whistles home, show parents, friends, neighbours.

Gail, near Blackpool, is making bookmarks and leaving them in places around her area, such as on the steps leading down to the sea.

I have a project at the moment making a large group of people (can’t say who as they might possibly read this), for a celebration event. Each whistle is personalised to a person’s interests, job role, or some funny event. And they will all know their whistles were made by a person living with dementia.

Now, I started whittling at the start of lockdown, four months ago, and I am learning the skills needed to make whistles, chess pieces, all sorts, with little carvings on them. I am 69 and have dementia.

You can teach an old dog new tricks!

The act of creating is a wonderful way to focus the mind, to block out all those annoying thoughts and anxieties, the calendar to do list, and the what ifs. I just focus on turning a piece of wood that I found on a walk into a whistle and/or a carving.

It’s tiring, mind. That sort or concentration (and standing) can leave me drained. Time flies by. Lupin barks after a while to let me know she wants attention.

So Craftivism has several wonderful benefits. It can also be a group activity, either face to face, like making a rag rug, or each person remotely making part of a finished thing. Like the squares being made by DEEP people to go into a massive blanket. That will be a wonderful craftivism creation.

Craftivism is a sort of social movement, in which the personal narrative is in the artistic creation, which speaks for itself. It’s gentle, beautiful (usually), and a great communicator.

When we get back to face to face meetings we should all lay our creative skills on the table and make things to share in our communities, including those decision makers.

Turning the tables

The brain disease that causes dementia prevents the brain from working as it used to, or as it should do. Billions of calculations and processes happen in a healthy brain without us thinking actively about them. So when you make a cup of tea, or type, or drive the car, you don’t have to think about each little step of the process.

When parts of your brain stop working correctly the functions and processes that these cells control stop working correctly too. So don’t be surprised if you find you put coffee in the teapot, leave the kettle to boil dry, or drive through red traffic lights.

And don’t be surprised if your thoughts don’t come when you want them to.

Classic mistake. Ask someone with dementia what they did yesterday! If they have had a drink today. Or how they feel about something.

What would you like for dinner?

What would you like to do today?

How do you feel about covid?

Do you think we should choose x or y?

Let’s move on to the next item. Now, what do you think about this?

There are very few facilitators (or chairs) of groups (or committees) who do not ask direct questions, as if people living with dementia can just come up with answers without thinking. Most conduct dementia meetings and groups as if they were just everyday groups.

DEEP is the only organisation I know of that has mastered the approach where we contribute in our own time, perhaps randomly, when and if thoughts appear in our struggling brains. It is an incredible skill, and requires huge patience and a totally different approach to talking to people. The tables have to be turned. Group discussions become about us, not about the facilitator or organisation. They give control to us.

I have sat in more meetings than I care to remember in which the Chairperson has banged through the agenda without giving members opportunities to reflect, to enquire, to discuss, to voice ideas, possibilities. They have their agenda items and they are going to get them done.

They hit their target and miss the point.

Now, if everyone round the table, or screens, has fully functioning brains with similar capability, a one size fits all approach is fine. But, unfortunately life ain’t like that. And nor are our brains.

I mean, why do we have different sets or streams in schools for grouping children with similar abilities? Why do some people become managers and others plumbers, some doctors and others porters? We are all different. Pit them together in a group and, well, you have a very mixed ability group. And teaching mixed ability requires utterly different approaches.

The same really is true of adults, whether they be 30, 50, 70 or 90 years old. We are all different. Add in diseases and, well, you can see the absurdity in regarding everyone at the table as equally able to process and think and make decisions at the same speed and with the same approach.

Some people learn by doing, some by remembering. Some reflect and others jump in. Some are introverts, others extroverts. Some brains work really well, others do not. Some are concert pianists, some gardeners. Many of us do not achieve what we really could have because we are damaged in some way. Many of us do not develop the brain connections needed for complex tasks.

We probably end up in jobs which suit our brains and our personalities rather than jobs which we might dream about.

Facilitating groups or committees is a hugely complex, skilled job.

Facilitators must put aside their personal feelings and experiences and agendas. They must leave their baggage at the door. They may have expectations set for them by others. They may think they know answers and outcomes but want confirmation from the group. They may tell everyone (or just themselves) that they have to get through the often long agenda by a set time. Or they meeting will go on until a decision has been made.

All ways of destroying engagement, reflection and good decision making.

And, of course, ignoring the absolute certainty that everyone round the table is different.

So, back to dementia. Here are some rules for facilitators or chairpersons.

Rule 1. Don’t ask a person with brain disease a direct question.

Rule 2. Don’t give a person with brain disease more options than they can deal with.

Rule 3. Allow a person with brain disease as much time as they need to think, wander, reflect, return, distill, and speak.

Rule 4. Don’t make a person with brain disease wait more than half a minute to speak, when they have something to say. They will or may forget by the time you call on them.

Rule 5. Do not have a long agenda. Keep it to two or three items/subjects.

Rule 6. Do not add new items during the meeting, which people have not had the chance to think about in advance.

Rule 7. Do not table papers at the meeting. Send them out several days in advance. Do not just apologise for lack of notice. Don’t do it.

Rule 8. Do not invite people to give long or technical talks/presentations to a group of people with cognitive impairment. It just doesn’t work.

Rule 9. Don’t use jargon, acronyms or technical terminology. Yes, it’s difficult, but you can do it.

Rule 10. Allow lots of thinking time. Perhaps drinks breaks, or just inviting reflection. Chit chat. Laughter. Recap what has been said frequently, at least every five minutes. Keep asking if people need further explanation or repeats.

Rule 11. Don’t regard it as failure if you don’t get through your (short) agenda. People with brain disease go all over the place when they get together. They enjoy sparking at random and you will often find you open a box of fireworks which you cannot extinguish. Nor should you want to! Allow people to go where people want to go.

Rule 12. Don’t be patronising.

Rule 13. Get over yourself. It’s not about you. You are simply the coach, the explorer, bringing all these treasures out of darkness into daylight.

There is nothing in this world that compares with the pleasure of seeing a child or adult realise that they matter and that they can speak and be listened to. People with dementia often withdraw after diagnosis and believe, because they are led to believe, that their lives are over. As a facilitator you can bring them back, and nurture them into new and often different people.

We often say we have more friends now than ever before, and that life is more fun now than ever before. We do things we only dreamed of, or didn’t even conceive were possible. Dementia is not a gift…far from it. But it is a new world.

The tables are turned, and you need to turn with us.

Egos and introductions

Well. I recently took part in two Teams online meetings. It was a new Equality and Diversity group at a local NHS provider. I won’t give more detail here.

But the meetings were meant to be inclusive, for people with disabilities, BAME and LGBT, and included of course me, with dementia.

Now I still handle meetings reasonably well, and I always stop and ask those who rush or speak too fast to slow down or say it again.

So we start, and the chair goes straight into the agenda. No introductions. No hellos, how are yous. No where are you coming from, or why you joined the group.

So of course I stopped it and asked for every person to introduce themselves. Taking up, oh my God, ten valuable minutes.

Then the agenda items. Two leading players from the Trust rattled through whatever they wanted to say, but did so using 500 words when 200 would have sufficed. And far too fast. Many Handcock and Johnson type false hopes and achievements. I could say misstatements?

I had to stop them and ask about acronyms. (Oops.)

We had about 12 people on the call, and several did not contribute, for whatever reason…but the chair did not encourage them into the conversation. It was purely transactional, on her agenda and terms. Get the business done, get our stamp of approval, and that’s it.

I actually said in the first meeting that the group should be contributing what each of us, coming from different ‘places’, felt was most important to address at the Trust. Rather than being told what they wanted. Otherwise what was the point? I also told the chair that she was conducting it like a face to face business meeting in a rush, with staff who knew exactly the context of the business.

After two meetings following this same pattern, including my interruptions, I was so pissed off I resigned. And I sent a full explanation of what they were doing wrong.

To her credit, one staff member, not the chair or the other rattler, wrote back a full apologetic letter and invited me to stay. But I will not.

….

Then today people on a DEEP Group Facilitators Zoom call talked about group dynamics. We’ve often spoken about those few group members who tend to dominate, who are not self aware, and who probably never have been. They drown the others, especially those who find communication hard. This can happen in virtual meetings too, where body language and frowns, etc, are less obvious.

People are people, and we have to accept them for who they are. But as facilitators our job is to ensure that everyone gets a chance – and encouragement – to speak up. We should not do all the talking, or indeed control activity or subjects; that is for members, all members, to decide.

So how should we behave in meetings, and how should we run meetings?

No one has a monopoly on wisdom or experience, but these are my ideas.

Deep groups, whether face to face or virtual, are based on the principle that they are run by people with dementia for people with dementia. Members are self chosen, and if they return they clearly find the group to their liking. The only criterion is that you have a diagnosis. Although, of course, some groups include those providing care and support.

You know my feelings about that, as carers very easily take over and become the voice of the person/s living with dementia. We never know whether it is with consent, but I suspect it is usually just habit.

But just as carers can dominate either their own partner or indeed the whole group, so also can plwds. We all believe in inclusion and accessibility, fairness and honesty. So we need to be honest if a person starts to dominate. Not just move a few big egos away into a separate space, but actually discuss what they are doing. It might be their disease, or it may be their habit. Either way it is not acceptable. We must teach patience and tolerance where these do not exist!

I used to teach, and the ethos of bringing people out of their lack of confidence, encouraging them to find their voice and speak it, has stayed with me. This also applies to passing on opportunities for engagement outside the group. I have found that by gently coaching and rehearsing with a person they find they can speak in public about their dementia, and they blossom in confidence and activism. It is the most rewarding experience for me to witness.

I suggest we should not separate into those who can communicate and those who cannot, those with big egos and those who are quiet. We should instead concentrate on helping and encouraging others, and hold our own egos and talkativeness in check. It takes a lot of thought and reflection, but the group will thrive as a result.

We need to remember that people may well have forgotten who the others are, even a week after the previous meeting. And in a business type meeting, we need to speak up and demand introductions all round at the start. I think the DEEP zoom practise of allowing 5-10 minutes of good humoured chatter, and then going round each person for how they feel, and what they’ve been up to, is how all meetings which include plwds should run.

We also need to have frequent pauses, reminders, recaps, opportunities for questions. As well as the yellow cards throughout!

But it is up to us to educate others about these things. I have resigned from the group I wrote about, because I have decided that my negative anger after the meetings makes them not right for me. I have said before, surround yourself with positive energy, people whose company you enjoy, doing things you want to do. No more ‘shoulds’ and ‘oughts’!

Those meetings also reminded me of the eight or more years I spent there on the patient involvement panel! Totally pointless! I mean, none of the action points from the first meeting had been done by the second! By the paid staff! WTF?

There are some fabulous facilitators, who really do just facilitate. They don’t dominate, they don’t get off on controlling the group. There are other groups where we know they are dominated, whether by the facilitator or a member. We must challenge these people, in a positive way.

We need to behave in the way we want others to behave. Be the change you seek, as I think Ghandi said.

This is a social movement thing. It’s also perhaps a socialist thing. We look for equality. Fairness. Our values must be those of respect, inclusion, tolerance, and honesty. If we can embrace these we will have happy groups and happier lives.

It is far more difficult to keep quiet than to spout. It’s hard work, and it’s a skill you have to learn. We will get our turn, and so must all the others.

Remember, we can all be teachers.

Too much on my plate

Please stop me from taking on too much.

Just ask me if I really want to do something, or have the time and energy to do it.

If you know me well enough there will be times when you must just say no, not now, wait a day or two before deciding, or do it next month instead.

Yesterday and overnight – another night of vivid dreams and wakefulness – I realised that I have become embroiled, that I have been overheating, and that I have begun to find familiar activities more difficult. Temper temper too!

I had one of my sweep moments cooking the other evening. That’s when I can only see in front of me a chaotic mess that I am urged to just sweep away…onto the floor. It’s my way of clearing the decks of clutter when I can’t see the wood for the trees. (Mixed metaphors abound)

Just sweep in one big dramatic whoosh.

Well I have so far restrained myself, and walked away for a minute, come back and (fairly) calmly put away what does not belong there, clear it all, and start getting out ingredients and utensils.

Yes, it’s that bad. And to cap it, yesterday I also overheated. Began to sweat. Not sure if I was hypo or what. Wondered about Covid. But unlikely now, and I have met hardly anyone.

Yesterday I had two zooms. Both 90 minutes and requiring concentration. Half way through the second I drifted, and was grateful to others on the call for helping out, as I was chairing!

….

Last night I dreamed that I was on my old bike, the old fashioned sort of sit up and be comfortable one. I had gone out early for a ride because I needed space and light and felt just tired. I rode and rode, listening to a book sitting in the front basket being read aloud as I went.

I stopped after some time. It was a local ride, though in very different surroundings. The rear tyre was flat. Easy to repair. So I set to work, on the side of a swimming bath, (don’t ask). Took part in a radio game show while I was there, a comedy thing which I did well in. Amused people.

Then returned to the tyre. I couldn’t seem to quite get it done, just kept moving parts around, unhappy with the awkward place where I was perched beside the water.

Terry Wogan had died. I was asked what I thought. I wondered whether he was just a natural talent or whether actually he had to really work at it to keep it flowing. But the interviewer said people didn’t want to hear anything negative about him just now.

Then I set to again with the tyre. It was not going to work. The inner tube was decayed. Too old. Repaired too many times.

My wife arrived. She waited and waited for me to get the job done, which I continued to slowly mess with. I couldn’t do it. So she put it in the car and we left.

A little later I asked if she had put the bike in the car and she said no, she had forgotten it. Left it behind.

Then we had to fill up with petrol, and I woke up

….

Pretty self explanatory I think. Given the way I had been feeling. I am the bicycle.

It’s given me a less than happy mood today, but also an awareness that I must stop myself from getting carried away. I want to do things. I get enthused. But then I get – more often as time drifts past – overwhelmed by commitment and complication. I need simplicity.

I need to get back in my shed and carve whistles. Weed the garden. Pray to my sunflowers. Walk with Lupin. And do a few fun zooms.

So, please, if you see me offering stuff, offering to do this and that, committing here and there for projects, just quietly ask me to pause and reflect, and even ignore my commitment sometimes. I get carried away, like many others, beyond my declined capacity, and end up with too much on my plate.

And oh yes, I also eat too much, especially when feeling tired and stressed. In the evening. Fresh bread and jam.

Too much on my plate.

What screws your brain?

What causes the switch to flick over to chaos? Out of the blue.

When you’re not looking. When you’ve got up and going and all is well…and suddenly…fog, chaos, anger, Big D.

For some of us the fog lasts for days or weeks. For others it’s just a few hours.

It may be the fog that blankets clear thought, decision making, impetus to just do something.

It may be a headache that refuses to go away and overtakes your mind.

It may be an outburst of anger, frustration.

Perhaps you cannot see what you are looking for, even though logic tells you it must be there. You grope around. Shuffle bits and pieces. Shut your eyes and take a breath. Walk away for five minutes.

One minute you can carry on with your activity, sequencing steps, finding equipment, utensils, ingredients, tools…the next something has blown a fuse and you’re groping.

It might be noise that does it. Like clattering if cutlery or pans and plates.

It might be being interrupted while you’re working’.

Can you just do this?

(No I bloody well can’t because I can’t think of two things at once. And because I am focussed on this.)

You return to your work but that switch has, well, switched.

And you suddenly see a chaos of buts and pieces in front of you. And you want to sweep them all away, onto the floor. Bloody hell. Aarrgh. Shit. Bugger.

You might of course just wake up in a fog. Fuzzy eyed, weary, not sure what to do.

If you’ve got your wits about you, which is doubtful, but you may just grasp a memory from the last occasion, you remember that the best thing is to get a mug of tea and sit down in a comfy chair and just slowly, gradually, emerge into the daylight.

It doesn’t matter about the two or three hours that go by. Just relax, breathe, and slowly emerge from that chrysalis of foggy fuzz.

This is dementia. This is brain disease. This is how we are, and how some of our days are.

And we learn to live with the fog and anger and confusion.

Writing about it, in a blog or diary or journal, helps you learn the tricks you use to get out of it.

And it gives you somewhere to find your own way of dealing with Big D, next time the fog descends.

Name and praise…or shame!

Are Dementia Friends and Dementia Friendly Communities working?

I have heard or read several people posing this question recently. And indeed I have been wondering for some time.

Is the name right? ‘Dementia Friendly’?

Do stickers mean anything?

Does anyone check that organisations actually provide a ‘dementia friendly’ service or environment?

Is there enough/any resource to back up the DAAs and NDAA work?

The Dementia Friends project was the brainchild of (Big Society) David Cameron. He set ‘the dementia challenge’ back in, what, 2012?

It was a great idea. There was (and is) huge need to increase awareness and understanding of dementia, and how communities and organisations could support people living with dementia to remain active and socially engaged.

And harnessing people to get involved in a social movement was certainly a great approach. It inspired many of us to become Dementia Champions and to deliver awareness sessions.

I was never a fan of awards for those who were deemed to be outstanding in various spheres of activity and influence, as awards go to just one person, and leave all the others who give time and commitment feeling a bit dry. No doubt one reason was to have a reason to,hold an event to celebrate successes each year. I was a judge one year, and I really did not want to select just one from a sparklingly good shortlist.

And counting and competing on numbers is not really in keeping with the social movement it was intended to be. Nor does quantity equal quality.

Now, eight years later, with nearly 4 million dementia friends, several hundred DAAs, and two thirds of NHS Trusts signed up to the Dementia Friendly Hospital Charter, it is time to review what has been achieved. Especially while we are locked up/down.

I have been on the inside of parts of the dementia friends movement, as well as being a person living with dementia. I started and chaired my local Shropshire and Telford DAA. I have made around 600 ‘friends’. I co-wrote the hospital charter statements.

I know that there has been very little resource put behind the movement. Just enough to employ regional co-ordinators, National DAA staff, and to create resources…which WE have to print.

The NDAA staffing has fallen in the last year to around 2! Regional dementia friends co-ordinators have shrunk in number and grown in geographical coverage.

So, what state are we in?

I welcome and value the 3-4 million friends who are more aware of what dementia is and how it affects us.

I welcome those (few?) organisations that have really worked to change and to incorporate features of being dementia friendly.

I welcome the bi-monthly meetings of our DAA where we share progress, ideas, plans. And raise awareness.

I welcome the smaller DAAs in our market towns and villages.

I welcome those (few) hospitals and community services that have really tried to change for the benefit of their patients (and staff).

But…

Too many shops and organisations, councils, etc, have signed up, done a few awareness sessions, and then…nothing.

DAAs have in some places become vehicles for local councils or individual egos) to declare their town to be dementia friendly, with little visible, meaningful progress.

DAAs may be running out of steam, with no resources and little support.

Too many NHS Trusts have signed up to the Charter and done very little for their users (and staff).

So, should we now adopt a new approaching ?

What could we do differently?

Well, how about using social media to name and praise good organisations, and shame bad ones?

Larger retailers and other organisations employ social media software and staff to find negative feedback and respond quickly to it. Why don’t we all just tweet or facebook etc the places that are helpful and friendly? And encourage people not to use the others?

So, we could look out for and report shops (like Gail’s M&S) and organisations that are customer friendly and dementia aware.

And report those that are not. (Like Gail’s Morrisons.)

We could really affect footfall and spending.

Gloves off, is what I say.

Name and praise hospitals, or shame them.

Councils, coffee shops, railway stations and train companies…they all hate negative publicity. But at the moment because we are too nice they get away with it. And most of us, me too, hate face to face complaining. So put it out there on social media.

No funding needed. No organisations with vested interests linked to funding. Just – yes – social movement. No certificates to be issued. No stickers. Just real voices of real experience.

Thousands of us. In fact millions.

Don’t be afraid of your voice and power. Use it directly yourselves.

I do, however, believe that dementia friends should continue, perhaps as ‘dementia aware’. It is, when done well, hugely important awareness raising, in person. And these sessions should always include a person living with dementia to give the reality of symptoms and challenges in their lives.

So, let’s start a debate while lockdown continues for many of us. Let’s change the paradigm. Let’s take control.

Be the change you want to see!