Suspended

I look out through the glass.

Down there, a peaceful orb rotates calmly,

Imperceptibly,

Moving round,

A little squint.

Off balance but

Perfectly balanced.

and

In my glassy capsule

I am above, away, at bay.

I have no meetings, no tensions,

I lie and wait, and dream,

And gently rotate each day

As clouds drift and gust across my view.

I am above and away

And below and inside.

I see cloud and sun above, and

Cloud and sun below.

I am, I suppose, neither

Here nor there

But both.

I long to escape my capsule.

But here I am safe,

Far above the confused reality of earth.

Far below the peace of an unknowable universe.

I am in limbo, suspension.

The inferno burns.

The universe winks

Silently.

I am in limbo.

I see both but envy neither.

The inferno, the universe…

They are inside me, inside us all.

Outside, trees continue to grow.

Bulbs are dormant, awaiting warmth.

Birds begin to struggle for food but

Pair up when sun shines and rain abates.

The earth slowly spins on its squint axis.

Perfectly balanced.

Up here, I wonder whether I shall ever return,

Or forever just look out and wonder at the glistening orb,

Sheathed in whispering cloud.

It will still be there after I have gone.

Our time is limited, but trees live on.

We do not grow old

I am on a stage, in a play, without a script.

Forgotten my lines. Forgotten my role.

I watch the action developing, listen to the speeches, the arguments, the drama.

Some of it is about me, some about others.

Some, indeed, I have no clue about.

And then I snap out and come to life…but without my lines.

What should I say? When? How? Where?

My fellow actors say just be in role, just ad lib with whatever seems right.

…and that, my friends, is how I view my life, or my role, at these times when things scramble.

….

Yesterday someone said something particularly nice to me, complimentary.

(You know who you are.)

And when I later walked in the rain filled field with Lupin I knew I would not sleep easily that night, because my head would be filled with what ifs, and if onlys, and replays…and then I would dream of something, probably not pleasant.

And so it came to pass.

And here I am, reflecting on the roles and games we play in our lives.

We have visible, outward facing roles, which we develop when we have to fit into new situations and dynamics. They change as our work and family and leisure lives change, as we live and the years pass.

(I think we don’t grow old; we LIVE. Years pass, and we change as lives around us change, and the world changes. Mechanically we wear out but we still think and feel, often as if we were still 21.)

We have invisible personae, our inner thinking and feeling selves. thoughts, fears, dreams, hopes, desires…most of which we hide inside, away from risk of exposure and hurt or disappointment.

A person might be seen as a happy, cheerful, jokey type, but inside be quite different.

One who looks less relaxed, more of a lonesome type, or just quieter, might inside be happier and more at peace.

You just do not and cannot know…until you actually get beneath their skin…till you take the time to listen and hear and understand them.

….

The link with dementia?

Is that brain disease is no different from any other disease, except you cannot see it or stop it. So it is inside, nibbling away, and we can only imagine what it must be like. We cannot say, yes, you limp because of your broken leg. Or you cannot get up because of arthritis.

Nope. With brain disease you look just, well, ‘normal’. At least until you develop tremor or rocking, or you mumble to yourself. Or any number of other ‘ticks’.

If others don’t know that you have brain disease they cannot see it. They only see what you show them. If you look and sound in control and ‘normal’ but they know you do have brain disease they don’t really know what to think. Or expect.

Completely understandable, and I don’t criticise it. Because until they talk to you and listen and hear you, they don’t know you. They only know their expectations.

Doctors who don’t ‘get it’ ask: ‘do you really have dementia?’.

Most people express surprise and admiration.

But actually it is just us playing one of our roles. We don’t have a script. We just say and do what seems appropriate at the time.

And, believe me, it is not always appropriate! (As some of you know.)

Later, though, we go internal and think. And reflect. And those are the days that are followed by the curious and uneasy dreams.

(Facilitated by donepezil in my case.)

You don’t know a person until you have walked a mile in their shoes.

(Thank you, Harper Lee.)

What to me may seem just normal and just being me, may seem surprising or unbelievable to another. But that’s only because you don’t know me. You may think you do, but you don’t. Not till you have walked that mile.

We are all learning, all of our lives, sometimes knowingly, sometimes not. We change. We learn new character roles to play. We learn new scripts. We find ourselves in new places. We adapt.

We do not grow old.

We change. And we wear out.

But inside we still think and feel and dream, looking behind us at our past, and ahead to our future. You just don’t see that.

Many assume that Shakespeare wrote that old age is like childhood, dependent on others, muling and puking. (As You Like It.)

We do not grow into children! Our bodies my fail but our minds do not. Our brains may not send the right signals but our thoughts are still intact, inside.

We do not want to play children’s games when our minds are wise and still wonderful.

….

Personalised care?

Walk a mile in my shoes before you tell me what’s good for me.

Stress, cortisol, and hugging

It’s a funny thing. This old disease, eating away my brain.

I can’t see it. I can’t feel it. I don’t know where it is or what it’s doing.

It’s been inside for decades. Whatever caused it to start, whenever it started, I hadn’t a clue. Still haven’t.

Well, perhaps I do have a few clues. But they don’t tell me what it’s doing right now. And what I can expect next month or next year.

The first we know about dementia, is when things begin to just not quite work right. Names. Words. Trips and slips. Hesitation. Writing the wrong words. Swaying in the shower. Misjudging distance, or time.

And by then it’s too late.

Well, actually it was probably too late thirty years ago. And anyway, too late for what?

Healthier living? Less alcohol? Less fat and salt? More exercise? Less stress?

I ate all the ‘wrong’ things as a child. Butter, sugar, syrup, fatty meat and gravy, cakes. Sweets of course.

I drank alcohol from around ten. Following the family tradition. Habit. Escape from unhappiness.

I lived with numbing anxiety all my life. Anxiety about what others thought of me. Did they like me or think I was an idiot. Probably the latter, as they showed it in their bullying early on.

If I avoided the cracks I might escape.

If I always did things in even or round numbers, or fives, I would be ok. Blinking. Coughing. Repeating things in my mind. Everything in even numbers, in fives, in tens. Touch one finger, touch them all.

I always looked at people’s faces and eyes. Were they looking at me? What were they thinking? Did I look silly? Or was I unnoticeable?

I wore colourful clothes because I wanted to be seen, to be different, unique. Yet I couldn’t stand making mistakes, or doing something stupid in public.

Yes, I had a yellow suit with red buttons!

I know that I strived to be the best in non contact sports and music to prove that I really could do something to be proud of. And to prove that my parents really should have loved me.

I was sent away to board at 11. Hated school. Was bullied and called names. Couldn’t stand up for myself. Was frightened all the time. And found escape tricks.

I went up to a little pub in the summer for a couple of pints before tea. If you went on your own no one cared.

I learned to love picking wild flowers in the grounds and putting them in a glass on my desk.

I drank sherry in my study. On my own.

And that set the pattern for my life. And my brain.

The reason I got through my life was a year’s psychotherapy with a wise old man in my mid twenties. I learned a lot. And what you know and understand you can live with.

Most of the time.

I have had two breakdowns. The first was towards the end of a three month solo camping journey around France when I was 24. One day I could not leave my tent. Could not be seen. Could not meet anyone. I was frightened into mental paralysis.

I loved my Citroen

The second finished my teaching life. I made one of my bad choices, to get promotion by joining a rough school. It was out of control, and I was totally unsuited to it. After a year of indescribable anxiety and stress, and long long hours of work, I went to pieces. My bodily and brain functions began to shut down.

I was eventually diagnosed with chronic fatigue, and that was probably right. The fatigue that fighting a losing battle with your mind leads to.

I know now that cortisol is released in fight or flight situations. Stress, anxiety, self defence, escape…

I believe that excess cortisol over a lifetime has attacked my body. My brain and my organs. My joints. My muscles.

I believe that stress over a long period causes the body to attack itself.

My first real disease was in my back, aged around 20. I played hockey (badly) and developed pain when playing. Xrays showed parts of two vertebrae had stopped growing or were dying away, leaving unstable joints. There was no known cause.

That was the start.

So why am I telling you all this autobiography?

My diseased brain is real. It is not imagined. It is clinically evidenced. But the causes are not known.

I spend a lot of time nowadays back in the past, reliving situations, decisions, feelings, even calling out in embarrassment or anger. I can see that my horrid self doubt and anxiety have caused a lifetime of illness. A GP once said to me that having three different conditions at once was just not possible. Hence, he failed to diagnose several in me.

Apparently I hold the record currently for the number of pills taken each day in my local town!

That is not chance.

I don’t want you to feel sorry for me. Life is what it is. And I have had a lot more luck than many. Now I am retired, and can choose to do only what I enjoy, and I live in a beautiful, quiet place, I am happier than ever before.

What I am trying to say and show is that love, and showing love, touching, hugging, knowing you are loved unconditionally…they are the big things in life. Without those, well, life will be pretty bleak.

I feel my little grand children are blessed, when I see how their mothers unconditionally show their love for them. They will feel loved and feel strong.

There is no medicine that can make up for lack of love, for lifelong mistrust of people, and for paralysing anxiety.

So as different symptoms appear, as they do, and as my body and brain gradually degenerate, as they do, I will take comfort from believing that what happened to me will not happen to my grandchildren. And I will hope that I have not done harm to my own children.

I love them, and I hope I showed it.

An ADVENTure Story

1

Acegi lived in a faraway country known as Aipotuland. He had lived for many years and had seen his children grow up and move away to distant places he only knew of from maps. Acegi’s wife had died five years ago, too soon.

Acegi loved a simple life, tending his garden, walking through the woods, and talking for long hours with his friends and neighbours. But Acegi had recently begun to forget things, and to wander off for days.

2

One morning Acegi received a letter written on parchment in large, clear writing. His daughter said she expected to give birth in three weeks, and hoped he would come to see and bless the new baby.

Acegi wondered how he could possibly journey so far on his own. How would he find his way? How would he eat and sleep? He would ask Alexei for advice, and talk to the village elders.

3

Acegi’s daughter lived many days away, so he gathered together what he would need for the journey. He asked Alexei for travel instructions, and printed them in large Arial letters. Alexei included photographs of places Acegi would see along the way so he would recognise where he was.

Acegi did have one creased and faded picture of his daughter’s home, which he treasured, and this gave him the strength and confidence he needed to leave his village.

The village elders presented Acegi with a necklace of sunflowers which their people believed would keep him safe.

4

Acegi packed a toothbrush, his pills and his breathing machine, and several pairs of underpants. And a spare pair of shoes. When Aklexei told him it was time, he left his home and walked the winding path that led to the taxi stop. He looked back and remembered the wonderful times he had had in his lifelong home.

5

As he walked, Acegi passed many familiar animals, and some he did not recognise. He smiled and said hello to those he knew, and their returned smiles and greetings comforted him. One ass, noticing Acegi was wobbling and meandering a little, offered him a ride. Acegi was grateful and rode quietly on the back of the helpful animal.

6

The journey was long and arduous, through woods and meadows, across streams and around dark pools. After the ass returned home Acegi walked as best he could until the sun set. In the warm darkness he lay back watching stars in the firmament. There was one particularly bright star that stood out as it moved across the bejewelled sky. As luck would have it, the star moved towards the East, where he was headed.

7

Next morning Acegi found himself at the place the taxis stopped. Taxis were the only way for Acegi’s people to travel long distances, and they followed no timetable. He might have to wait several days, but he had plenty of time. While he waited he would talk to his friends through Alexei, and send them bird song recordings for their pleasure.

8

Next day, as the sun rose, and Alexei urged Acegi to enjoy the day, a taxi arrived in the clearing. The driver was the same smiling man as in Alexei’s photograph, and Acegi climbed up for the long drive to town. As they travelled over hills he could see for miles and miles, in fact he could view his whole world. And as they travelled East, always East, Acegi hummed along to his favourite songs which Alexei played for him.

9

When Acegi reached the outskirts of Mehelhteb darkness was gathering. The bright star above sparkled through the gloom. It was now right overhead.

Acegi knew this was the town in which his daughter lived, but he could not remember her address. As it was late, Alexei advised him to find a nearby room to sleep. The taxi driver followed Alexei’s instructions to the Best Eastern Hotel and Acegi soon lay down to dream.

10

In the morning Acegi was hungry. He walked out and found a cafe, where many friendly faces were engaged in deep discussion. As he entered they invited him to join them.

Acegi was grateful sit and and listen to their stories, while he shared bread, coffee and cakes with them. Perceiving Acegi’s evident fatigue, one wise old man offered him a few drops of balmy oil.

“May these drops of myrrh restore you, my friend,” he said.

11

Although Acegi was unfamiliar with the streets of Mehelhteb, he found his way around without mishap. Directions and street signs were large, bold and mounted at eye level; crossings were marked with “look right, look left or look out” markings.

Acegi was meandering along a side alley and failed to see a sign in front of him, as he was watching his feet trudging through dust. The bang on his forehead was such that he fell, and he lay still, unconscious.

12

Acegi awoke in a brightly lit, white room, lying on a couch, curtains at his sides. Where on earth am I? he thought.

Raising his aching head he could see a clock saying “Welcome to Kings’ Hospital, Mehelhteb, December 12, 2019. It’s 16.35. The weather is sunny.”

Relief flooded through him, and he saw a woman wearing a big smile approaching his bed. Hello, she said, bending down and looking closely at him, my name is Neladgam, and I am a doctor.

13

Three days and three nights Acegi spent in The Kings’. At first he neither ate nor drank, but for sips of water when handed a mug. On the second day he found a dish of tiny, dainty morsels on his side table, just beside his outstretched arm; little pieces of cake and tiny sandwiches. Then he heard a familiar voice coming from a mug saying Acegi, it’s time for another drink. He remembered the kind doctor Neladgam.

Acegi soon began to feel better and ready to go and find his daughter.

14

When Acegi walked out of The Kings’ hospital he was given a gold and blue coloured badge and told always to have it pinned on his clothes when away from home. Dr Neladgam explained that if he ever got lost, or could not remember where he was, he could ask someone to touch the gold badge with their Alexei, which would tell them who he was and where he lived.

So off walked Acegi, feeling safe, ready for the world outside The Kings.

15

Acegi asked Alexei to find his daughter’s house. Yram lived somewhere in the East of Mehelhteb, and Acegi thought he remembered her mentioning a zoo nearby. Alexei found two possibilities, and gave him directions to get to each.

As he walked, Acegi was struck by the noises he heard. There was a lot of traffic and plenty of crowds, and here and there street musicians. At times the noise interrupted his concentration, even deafened him with a blurring and blasting that left him unable to think at all. He shouted at Alexei to take him away from the main roads.

16

Now away from noisy thoroughfares, Acegi walked comfortably past small boutique shops, their window displays full of colourful jewellery, clothes and pastries he had never seen before.

On one occasion he stopped and stood at a window, staring at a stranger looking back at him. The person was very close, staring penetratingly at him. When Acegi turned his head the stranger turned too.

Acegi abruptly ran up the street, and when he looked round the stranger was gone. Acegi resumed his walking.

17

Acegi was tiring. His legs ached, his head throbbed. He came to what looked like a taxi stop and read the timetable, then sat gratefully on a soft, welcoming bench. The sun circled and sank, and still Acegi sat, nodding gently, eyes closed. He sat on through the night, waiting for the taxi that would take him to his daughter Yram.

Now and then a passerby looked oddly at him, with a questioning or even pitying half smile. Acegi smiled back and waited.

18

As the sun rose Acegi knew that a taxi would soon arrive to take him to Yram. He was hungry and thirsty, but he was afraid that if he walked to a shop he might miss his lift.

Soon the street filled and one young woman dressed in a blue smock stopped beside him. She looked down and told him that no taxis ever came here. It was just a bench to rest on. The timetable was just pretence. She smiled and continued on her way.

Acegi was confused and annoyed. He had wasted a day, and Yram might give birth before he arrived.

19

After a breakfast of sourdough, honey and milk, Acegi walked on, refreshed and eager.

That afternoon, as the sun began to wane, he found an Inn. When he went in the clerk looked oddly at him, up and down, and told Acegi there were no rooms available.

Disappointed, Acegi walked on, tired, footweary and a little downcast. He came to a busy crossroads. Luckily, he looked at the ground where he read a warning in big white letters: LOOK RIGHT. As he paused, a lorry thundered past him.

20

Acegi had nowhere to sleep. The sun was low, his eyes were dim, he could hardly see, and he had not got his glasses.

He walked haltingly past several animal enclosures, each containing a pair of animals. The zoo! He must be close to Yram’s home.

Round a corner was a shed with broken doors. He slipped inside and lay on the floor. He soon slept, and dreamed.

21

Next morning Acegi ached all over. He entered a pharmacy, with the name F. Incense over the door. As Acegi rubbed a deep, old scar on his face the pharmacist served him. Frank suggested aromatic oil for the scar, and said it would heal other aches and wounds too.

Acegi asked for one or two other potions which he regularly took, but which were now nearly exhausted.

Like Acegi.

22

Acegi felt refreshed after breathing in the aroma from the oil Frank gave him. His aches calmed.

Walking along busy streets that afternoon, Acegi saw that the shops were filled with glittering colours and little trees of dazzling lights. Several trees had some lights which seemed not to work. Acegi stared at them, willing them all to light up, but try as he would they remained stubbornly unlit.

Acegi walked on. Some things were beyond his power to mend.

23

Now, Acegi carried with him a small, creased photograph of Yram and Hpesoj’s bungalow. He held it in trembling fingers and looked around at each home he passed.

The bright star above was still there, unmoving, dazzling, and Acegi noticed a reflection in one window he was passing. The bright star glistened in the glass. And he saw this was the bungalow in his treasured photograph.

24

Acegi approached the front door. The star’s reflection was still glistening in the window above the door. He knocked on the door and waited. He knocked again, and tried the handle.

He let himself in, and heard voices nearby. There were excited whispers, and sounds of people eating. Acegi walked through and found his beloved Yram and her husband, Hpesoj, seated at a small table.

After many kisses and long hugs Acegi was invited to sit and share their bread, cheese and wine. They held hands and silently gave thanks for their wonderful good fortune.

25

After a good night’s sleep, Acegi rose to the sound of joyous cries and laughter from his children’s bedroom.

Acegi saw Phesoj sitting beside his daughter, holding a small bundle, and inside was the tiny radiant face of their baby.

“Acegi,” said Phesoj, “welcome our new baby to the world. Susej.”

“Husband, you cannot call him sausage.”

“Susej,” Phesoj replied, “is the right name for this child, this wondrous day.” And Yram gently purred her delight.

Phesoj turned to the mirror and admired his beautiful son.

…….

When we get there…Happy Christmas!

Dear Congressers

Dear Congressers,

I am not attending Congress this year. It’d be easy of course, being virtual. But I am pretty much out of campaigning mode now, and hearing about good things happening around the UK always makes me reflect negatively on my own experience.

I mean, I don’t think we are any further forward in Shropshire than six (?)years ago, when the conference was in Telford. We have a Dementia Action Alliance which has no doubt raised awareness here and there, worked with some organisations on dementia friendly environments, and helped with training for healthcare staff. So that is a positive.

But we have seen the few dementia support groups run by the Memory Service stopped last year.

No expansion of our two pilot dementia navigator sites (10% of our population?).

No admiral nurses in Shropshire healthcare, though we did have one briefly with a care provider company.

No named support staff following diagnosis.

No annual primary care reviews (though our GPs claim their £70k pa for doing them).

Our hospitals have an incredible specialist dementia team, but it is tiny and overloaded to the point of burnout. Very few hospital staff are getting face to face level 1 or 2 dementia training.

Our community trust has completely given up on their dementia work, and abandoned all commitments made two years ago to implementing their plan.

The memory service has a crisis team to keep people living with dementia out of the mental health hospital, but not out of other hospitals, or anything else.

So, forgive me for feeling reluctant to be enthusiastic. I’ve been campaigning, writing, speaking and meeting about getting change here (and nationally) since 2014. And there are pockets of great work around…and huge deserts of nothing that’s worthwhile.

When I hear anyone proclaim that there are lots of opportunities in Shropshire for people living with dementia to be engaged and supported, I despair. Yes, when listed, there is a considerable number of little groups around the county. But each probably provides some form of support or activity for a handful. I estimate that no more than 150 out of 3,500 of us attend any of these.

Might be due to lack of knowledge, or lack of transport. Might be because the activities are vaguely sick making for some of us. Or the disease stage of attendees is well beyond most of us.

And often the same people go to several groups, thus creating the false impression of widespread attendance.

I think the most useful session I attended last year in Doncaster, before the rains fell and Noah’s ark was swamped, was by Ridouts, about capacity and the (then) coming changes. I’ve used that a lot.

What I enjoy and value most though is the face to face, hug to hug, friendship. The meeting up each year and talking. Having a bit of fun, and time to reflect, discuss, update. And that is what I will miss this year. Just friendship. And touch.

We all seem to agree that Zoom meetings have allowed us to get to know each other much better, and therefore to joke and mess around like a real or natural group of friends. Groups change from time to time, as the dynamic and the tone change! Some meetings are (too?) serious, some frivolous (bravo). Some are energising. Some are tiring.

Virtual meetings with core healthcare organisations are often hopeless for us. No introductions. No chat. Haven’t a clue who is there. I am usually the one who slows it all down, asks for repetitions, introduces a little humour (very cautiously!…have to judge the response).

I hate Microsoft Teams. Zoom is much easier and more relaxed for us.

So I wish you all well. I see the usual faces will be on stage, speaking. I hope you hear something new from them.

Good luck to the speakers who live with dementia.

I hope to see you again in 2021.

PS…

Couldn’t resist adding this…

Dear Self

Beautiful poem. Beautiful thoghts.

GRACEFIFTEENTEN

Dear Self,

I am sorry for the times I tried to be somebody else

I’m sorry for the days I didn’t put you first

When I saw your exception as a sickness

And how I doubted your majestic strength

Dear Self,

I’m sorry for shedding those tears

I’m sorry for denying your presence every now and then

Making up unwarranted excuses for your uniqueness

Mainly because you don’t fit in, you are different

Dear Self,

I’m sorry for disregarding your priceless worth

I’m sorry for making you take so much

I shunned you when their attention I’d won

Shushed you until from a whisper, you became voiceless like the ‘k’ in knob

Looking back now, does it even make sense?

Looking back now, everything was pointless

I acknowledge my mistakes from the onset

I beseech you therefore, for your divine forgiveness

Making a solemn promise of a changed mindset

To…

View original post 46 more words

Last night I fell off a cliff

Last night I fell off a cliff.

Not waving, not drowning,

Just falling, helpless,

Through a space of nothingness.

Last night I fell off a cliff.

I think I felt it coming,

A growing vacuum,

Sucking the life out of me.

Last night I fell off a cliff.

I sat on the bed side,

Held my head, and

Breathed in silent despair.

Last night I fell off a cliff.

And in that falling I was

Nowhere. I was

Neither here nor there nor anywhere

Last night I fell off a cliff.

I didn’t dream. Just wandered

In and out of life, the past,

The mistakes, the opportunities,

The loveless childhood of fear.

This morning I lay silent and gathered myself.

I’m on the path again, looking out over

The sea and the fields and the glistening grassy slopes,

And I am alive still.

This is how it is. Not often, but unavoidably on a repeating loop.

Our brains are damaged. We have lost our stamina and our resilience. We are irrepressible and irreversible. We laugh and we cry. Torn into pieces which we try to sew back together.

For how long?

Dementia? No, you can still talk…

More examples of clinicians’ stereotyped judgements!

More people living with diagnosed dementia floored, hurt, lost.

What’s this all about?

Yesterday I heard another awful example of a clinical expert in neurology telling someone with a dementia diagnosis that they should have a carer/supporter with them, that they were speaking surprisingly well, that they were – yes – SMILING. So really, they didn’t look like they had dementia!

Memory service clinicians don’t do this. Mostly, they get it. I mean, otherwise, why would they ever diagnose anyone still standing and speaking.

Oh, and smiling.

Which has dementia?

Psychiatrists and Neurologists may not get it. They tend to see extreme, severely ill people. I remember I was once told by a neurologist, when I had chronic fatigue syndrome… ‘look at those people in the waiting room. Do you really expect me to do anything for you?’

So if you are walking, talking, dressing…you are fine. Dementia? Nope. Course not.

There’s a certain consultant who has frequently made these judgements in public. Often about people he has never met and assessed. He has other theories, but his attitude boils down to…if you can talk, you haven’t got dementia.

There may well be many causes of symptoms which mimic what we understand to be dementia, causes which are not yet understood or researched. But the fact is, if you have the symptoms you have something wrong, and in the absence of other medical causes it is highly likely to be brain disease.

We say…time and time again…disease starts somewhere, and ends somewhere. In between, with our brain disease, there often are decades of decline. Early diagnosis of symptoms means we are getting diagnosed while…wait for it…we can still talk and walk and smile.

Dementia is not just the end stages. It is the whole journey. And for goodness sake, most of us have to wait years to be taken seriously enough to get assessed.

Depression…the usual starting point. Easy to say and write. Prescribe pills. Go away.

Does depression cause imbalance, falling over? Does depression cause loss of words, hypersensitive hearing, loss if inhibition?

Probably yes, here and there, occasionally. But add all the symptoms up, listen to the patient’s story, do scans and tests…don’t assume anything just because it’s the easy course.

And for God’s sake don’t, years later, change the diagnosis from dementia to some other condition unless you have absolutely compelling evidence.

Can you imagine how it feels to have learned to live with dementia, the label, the self doubt, the anxiety, for years, and then to be told, oh no, it’s not! But we’re not sure what it is.

A friend was told exactly that last year. Go back to work. There’s nothing wrong.

And yet he still had the same distressing, disabling symptoms of five years earlier.

Lost his benefits. Had to shout very loudly to get re-assessed. In fact, the memory service here stuck by their original diagnosis. It was a bigwig hospital in London that changed its mind.

We, the poor old punters, have to take what comes our way and live with it.

Clinicians who don’t listen and think imaginatively just go home and forget.

The stories I hear fill me with sadness and anger. Sometimes despair.

Not only do we get almost no support to live with our terminal illness, we sometimes get destroyed by thoughtless egotistic clinicians.

Stop screwing with my brain

Jiggling and flashing screws with my brain

Do you read newspapers online?

Shropshire Star, Daily Mail, Express, Mirror, and many more.

(I don’t know much about Telegraph and Times as they are paywalled.)

They all depend on online advertising for revenue, and they increasingly cram ads onto their pages.

You open the site and it takes twenty seconds to settle, as the ads fight for space, up down, across, jiggling, flashing…

While you just want to read the – now – small bit of news text. It moves. It disappears. Boxes open in the middle of it.

Which is news, which is ad?

It is totally mind boggling, disorientating, annoying and angrifying.

And actually it stops some of us ever returning to them. Why would I choose to annoy myself trying to decipher news and weed it out from ads and privacy notices and subscription offers?

It screws with your brain.

It’s bad enough that every time you visit a website you have to consent to cookies, or check your settings, or something else.

These annoying and often unnecessary interferences are driving us away. They’re losing our business.

On television there is increasing use of quick cut, flashy editing that is so fast I cannot process it before the next appears, and so on. Combine this with the music noise and, well, I am screwed.

I hold my hand in front of my eyes. I mute the TV. And then I switch over or off.

Radio 5 live is the same. Constantly blasting jangly, quick cut ads and trailers for their own station! Insanity.

Now, ok, I am 69. Dismiss me if you wish. Just becoming an old fogey fart who likes to complain. Can’t keep up.

Yes, Yes and Yes.

But (as ever, there is a but) it is not really age. It is disease. Brain disease. I literally (and I distrust that overused word) I literally cannot process these swift, sudden, unexpected changes in sight and sound…

Now I am happy reading and subscribing to The Guardian. If I were someone else I might pay to read the Torygraph.

The Guardian presents itself in a relatively simple, conventional way which is fairly easy to navigate. The Torygraph appears to cram a lot of story headers onto each page, in small, serif print which us a bit hard to read, but it does not jiggle and flash like red tops and locals.

So, what is my point?

It is that these media outlets which are taking over the delivery of ‘news’ online are NOT dementia friendly. Quite apart from the actual content, they are making the lives of hundreds of thousands more difficult. They are barring us from reading news and background and features…because we cannot process their stupid, annoying, eye catching, eye defeating, jiggly, flashy images.

And if their advertisers realised this they might think twice about wasting their money. We, and many others with healthy brains, will not be able to decipher, remember and respond to their ads, and will just give up.

Please, please stop this senseless descent into a Hell of flashes, jiggles and confusion.

The 3 Rs…Risks, Rights and Responsibilities,…oh, and Dementia

Today I am going to bake a cake.

A three layer sponge cake, with a themed pattern running vertically through every slice.

Yes, I watched Bake Off. Of course. And this morning I heard a little of Thought for Today, with Giles Fraser reflecting on risk and driving. (And, of course, God.)

I hear endlessly from government ministers about responsibilities…ours, not theirs. We have responsibility to follow Covid guidance. Not to pass on big V to our families and others. To quarantine after returning to the UK. To isolate if told to.

Then I hear that Tory backbenchers are worked up about our rights to individual freedom are being infringed by the V guidance and, now, legal restrictions.

Care homes are refusing to allow visitors…and now being instructed by HMG.

On the radio a person explains why she broke the quarantine after returning from Majorca, where rules for distancing were supremely well followed. She decided on balance that she was safe to meet a few chosen people, but not her parents.

Where is the tipping point between the right to family life and to individual freedom to live as you choose, including taking risks, and the responsibility not to adversely affect other people?

Who should or can decide someone else’s responsibilities? Does our elected government decide for our individual good or our collective good? Do responsibilities to the collective good of ‘society’ override individual rights? Always?

….

Well my starting point is: do my actions adversely affect anyone else?

So if I walk around a field, am I adversely affecting the farmer who lives away from the field, out of sight, if I do no harm to the field and crop? (I believe we should have the freedom to roam everywhere, with the responsibility not to harm.)

I can walk along a cliff top path. I can drive my car. I can get up at 2 am.

Yes. But not push someone off the path, run someone over, or play devastatingly loud music. My responsibility is to not harm others.

Ok. Now, what is my government’s responsibility to me?

To use my taxes efficiently for the benefit of everyone.

To make laws wisely which balance rights, risks and responsibilities.

To not harm people, collectively or individually.

….

Where does that leave us in these difficulties times?

Our government was not elected by a majority of the population.

Our government is spaffing our taxes at private companies that have been proven time and again to be inefficient.

Our government is prioritising the economy over individual safety.

….

So, dementia, care homes, isolation, risk, freedom…

The NHS exists to provide, in return for our taxes and National Insurance, health care when we need it, ‘free’. Dementia results from disease. Those who develop this disease have a right to health care and support. But…we rarely get it in any meaningful way. Our government is not meeting its responsibility to us.

Care homes provide, literally, homes for people who towards the end of life are unable to live on their own. Residents live at home in these homes. And, note, they pay a lot for their home. Residents are alive and human. They are not dead zombies. They have a right to family life, and to take risks that do not harm others. Yet they are being denied these.

Ah, I hear you say, but visitors might bring in the V and kill others.

Yes. But not if we had the testing with rapid, reliable 24 hour results , that we could have had if our government had not spaffed our taxes at private, inefficient companies. Most of which have never done anything remotely resembling viral testing.

(Blood pressure rising…flour all over the floor)

We could isolate all over 65s? Nice 21st century apartheid, as someone cleverer than me said. Good old ageism.

We could lock students in their flats? Oops, already doing that. Great idea.

We could introduce new restrictions in hundreds of districts, with different rules, so no one understands what they can and cannot do. Yep. Done that.

….

Our population is completely confused. We are ‘led’ by fools who put their own interests above those who elected them. Who ignore their responsibilities to us. Who believe they are untouchable. And who daily take risks with our lives, while denying us the right to choose our own risks.

Our population has become obsessed with pro or ante Brexit, stoked up into furies by those fools whom we, for some reason, elected. And by the press, largely owned by self interested, wealthy capitalists.

We don’t trust our politicians to act virtuously, to tell truth, or to act with responsibility and respect our rights.

And we feel, and actually are, powerless to anything about it.

No wonder people are disobeying laws and rules, angry, bewildered, lost in abject powerlessness over their own lives.

People need leadership they respect and are therefore happy to give power and control to.

We are led by fools, and we are not happy.

My cake is a mess. There is no theme running through it. No nicely crafted layers.

And we are on our own in this sea of miserable mess.