Another insightful blog about living well with dementia.
What you see and what you don’t see.
Month: May 2015
PWD Cecil Ristow May 2015 Living well …
I urge you to read this blog by a man recently developing a type of dementia.
As ever, the same “rules” of engagement for living well apply to all of us.
Oh dear, my poor family
Well.
I’ve had my first serious row resulting from my faltering memory. All my fault of course, I now know.
I had put aside an envelope with a new SIM card to use abroad.
Didn’t need to load it until we go.
Put it in a safe place, “my drawer”.
That was ten days ago.
So, yesterday I had to find out my new phone number for when we are abroad.
(We have house sitters!)
Went to the drawer,
“My drawer”,
Looked inside.
It wasn’t there.
So I looked around.
Asked my wife if she knew where it was.
She might have moved it.
I hadn’t.
Someone must have.
No sign of it…
“Someone has moved it.
“It wasn’t me. I don’t touch your letters.
“Well someone has moved it. I put it in there so I knew where it was.
“Who else could it have been?
You must have done something with it.
“No. I know absolutely I have not opened it.”
And on we went…
And on…
I searched everywhere I could think that “someone” could have put it.
Drawers, a trolley where I keep things, other rooms…
Still no sign.
Eventually I found a delivery note for the SIM card.
“So someone has opened it, and it wasn’t me.
“Well, it must have been, because I have not touched your letter.
“No. not me. I would remember doing it.
….
I spent the night waking and wondering about the envelope and SIM card.
I won’t list all the options I went through, but they were generally uncharitable.
And I decided to get the card cancelled and replaced next morning.
….
Get downstairs next day.
“Have a look on the trolley, George.”
Slight hint of smirk.
There it is. A little mini envelope containing, of course, my SIM card.
Right in front of me. On the top.
Yes, it had been underneath something else exactly the same size, but…
“Effing bloody eff”, or words to that effect.
So I gave my dear wife a big hug, or at least leant my head upon her shoulder, and
Apologised.
“Oh God. That’s the first time I really haven’t remembered so completely what I have done…”
And the first time I have really lost my rag over something like this.
….
So, what next?
I am going to be a challenge for my family.
I will try not to get angry.
I will keep myself calm. Tell myself that it will turn up. No one is out to get me. It’s not the end of the world.
But it felt like it for a few hours.
Oh dear. My poor family.
Why can’t I read a book any more?
Since I was 14 or so I have read a lot.
Slowly, but a lot.
It started with pulp detective stories. Gideon…
And westerns. Sudden…
I read Chairman Mao’s little red book. It was fashionable at school.
I read The Rise and Fall of the Third Reich.
I read Paris Match.
But my own writing was rotten, uninventive, uninspired by any English teacher I ever met.
I learned a few bits of poems by rote and learned to cheat when rewriting them in tests.
I did comprehension exercises.
I actually read and wrote about Northanger Abbey for O level, with a short piece on the different uses of ‘nice’. A word I love today.
When I left school I was bored by my accountant training.
I lived with late adolescent angst,
Started to read poetry,
And write.
I read Shakespeare, Keats, Byron.
(Do you remember the BBC did a dramatised Don Juan in 1973?
I lay in bed and read along.)
Steppenwolf, Giles Goat Boy, War and Peace.
After a three month tour around France,
Writing prosaic drivel and a long long journal,
Finding myself
(In reality losing myself in a breakdown)
I enrolled to do A level English at a local college.
Then University.
So I read and read and read.
But now I can’t get to the end of a book.
In recent years I have, like many, moved from complicated novels to simpler, formulaic stories.
Stig Larsen, Michael Dibdin (Zen was definitely a favourite)
Then Jo Nesbo…no, too repetitive, too horrid, too unnecessary.
I re-read The Great Gatsby the other day, after hearing a BBC adaptation.
(I loved Fitzgerald in my angst ridden years.)
Nowadays I often get started, but after less than a hundred pages I lose interest.
I want to read literary stories, cleverly written,
Subtle, poetic use of language.
But I can’t usually find them.
Or finish them.
I like short story techniques, sparse, spare writing.
I remember teaching using a collection of very short stories to inspire my classes to say no more than was absolutely necessary, and never to state facts about characters.
Suggest. Imply. Don’t tell.
The 50 word story.
Try it.
I don’t completely forget what I have read, just lose interest in what might happen, or why.
It takes longer to recall a character, an event, what was said, so the development of the character is less interesting.
I still want to read.
I buy books on kindle or iBooks.
I keep them as a go-to library.
I just don’t read them.
Is it because I prefer doing things now? Not sitting for long periods.
I don’t like reflecting?
(Though I seem to reflect all the time.)
I can’t separate my memories from my reading?
As I read I think about other things,
Wander through my landscape,
Wonder what will happen.
Each day I just want to ingest everything around me
Because it might be the last time I will see the world around me on May 25th.
I might not again see the flowers emerge, or hear the spring birds warbling out their songs.
Or perhaps I will not understand them the same.
Or just forget them.
It sounds trite, I know.
And I don’t wake up each morning thinking I am going to die today.
Just wondering how long my ability to enjoy all this will last.
This year I am enjoying being outside more than ever before.
It does feel as if it might be my last look at emerging summer.
A last listen to those beautiful sounds.
I am finding it more difficult to find the pathways into my mind.
Concentrate and I’m fine.
Stay on one subject and I am good.
Meet new people and I collapse.
Ask me a question off piste and I just stick in a void.
Where have you put that…?
Thingamebob, whatever, that thing, you know, you use it to undo things, it’s like…
The words just don’t make it to the surface any more.
Keep it simple. Keep it to the weather, the beer, gardening, (ah, no, flower names?)
That wedding we went to…
Just conversation without much digging needed.
Yes, the reason I can’t finish books any more may be that I am frightened of losing touch with my reality, and what makes my life worth living.
I don’t want to think about things that are unreal.
I need to take in what is around me while I can.
Life is passing by and I need to go on capturing and enjoying it before I can’t.
So I look and listen and catalogue, and imagine and enjoy and smile.
I miss reading.
Perhaps in the cold, dark winter I will again sit with a book.
For the moment I live for the moment.
Time for a dementia revolution
Wow. One million dementia friends.
Got my gold butterfly yesterday.
Not that I have done more than about 35, I think.
I have offered to put on sessions many times to local NHS trusts and a few other organisations
But so far no one has taken me up on these.
Odd, to turn down free offers.
But the community trust does want to put all staff in one of its community hospitals through the friends awareness session. And to make that hospital dementia friendly.
(Um…shouldn’t it be anyway?)
I’ve held a session in my town.
Three people came.
Better than none, yes. But hardly cause for rejoicing.
I was reading a piece about the dementia friends project today, it being Dementia Awareness Week.
What do we hope becoming a friend will change?
Being patient when someone ahead in the queue is struggling with change or packing their shopping.
Helping someone catch the right bus and get off at the right stop.
Offering help to someone who seems to be lost or confused?
Well I put these things into the helping one’s neighbour drawer,
Being a good citizen, a kind person.
So what else is dementia friends about?
I think the key learning is about
Dementia being an illness not old age,
And that you can live well with dementia.
It is about awareness of the disease, so you may recognise a person’s difficulties and offer help.
It is about getting people to talk about dementia
Like they do now about cancer.
And it is about starting a social movement that will influence change.
I also read about a CCG that is decommissioning their Admiral Nurses.
And I know of a nearby CCG which has decommissioned RAID at the local hospital.
RAID is a system for supporting people who attend A&E or are admitted and who have mental ill health. They need careful care, supportive interventions…
RAID is a well recognised system that has been introduced in many hospitals across the country.
It helps the many thousands of patients with mental ill health, and who have historically got a very raw deal in A&E.
Mental health services are underfunded.
Hugely.
And it is now going to get worse.
And HSJ carries articles about mental health trusts facing budget cuts in coming years.
The skilled admiral Nurses will be replaced by a carer support service.
I guarantee the new staff will be much lower skilled and less knowledgeable and lower paid.
In fact, probably it’ll be provided mostly by voluntary sector organisations.
It’s all very well growing the number of people who are dementia friends.
But what about the skilled, expert support that people with dementia need?
I don’t see these services being grown.
And there are too many people who are unsupported after diagnosis
In ways that would be meaningful and useful.
We’ve only scratched the surface of what is needed to support people with dementia.
Diagnosis is a start, not an end.
7,000 new diagnoses since the election, Jeremy Hunt blogged yesterday.
7,000 more people needing information, support, care, encouragement…
And their families too.
Are memory services growing?
Are dementia cafes growing?
Are peer support groups growing?
Dementia Action Alliances?
Great organisations and great, dedicated volunteers.
Great intentions.
A few successes.
But I tell you what,
It’s scratching the surface if we don’t get real funding for professional dementia services.
Fewer than half of DAA members have updated their action plans in two years.
They may be doing some good stuff, but many are not.
That’s not really success.
Looks good on paper, but…
I have dementia.
And I want timely, appropriate support and information during my journey.
I want expert Admiral Nurses to help me and my family.
I want peer support groups and drop in cafes.
I want singing for the brain and men’s sheds.
And I want open, honest conversations about my illness and my life.
I want these for everyone.
We need to move further than dementia friends and action alliances.
We need a revolution in how we support people living with dementia.
And we need to ask these people what it is they want to help them live well.
QE What are you up to?
QE Ambulatory care day case angiography 7.5.15
This week I spent most of a day at Queen Elizabeth Hospital in Birmingham in the day surgery centre. It was not a good experience. Here’s why.
7.30
Ambulatory care reception lady very pleasant, smiled…good start.
7.45
Arrived in the day surgery ward…
Dirty curtains in my bay…with biro marks all over.
Nurse came to clerk me.
Spoke very quickly. Didn’t smile. I’m just a piece of luggage.
I asked her to slow down but she didn’t.
No personalised conversation at all.
I asked her again twice to speak more slowly.
Blood sugar was 8.9. Very high for me on a fasting test. I told her it was odd. She didn’t clean my finger…might have affected it. (Or is my own device wrong?)
She didn’t ask me about valuables like phone and iPad, money etc. other patients were asked and had to sign a form.
….
The other admitting nurse was just as bad regarding personalised conversations, not listening to the patient, tone…just flat, mechanical, dull, uninterested…
….
Another female staff, possibly a technician, came to insert a cannula in my arm. She was inept and applied the sticky pad before connecting the thing to the tube, so it went wrong and she had to take it off and start again.
A male staff did a 12 lead ECG on me. He tried to use small stickies on my hairy chest but they wouldn’t take. He kept trying, pressing them on, and failing. He muttered about shaving but kept trying. I said, yes, shave me. So he had to go away for three minutes to find the kit. Why didn’t he have it with him and do it straightaway when he saw my chest?
A porter for me (and others) was deadly dull and just grunted quietly a couple of times. No face to face or personal contact.
….
14.00
The other nurse grunts as well. No communication with patients beyond asking the minimum required questions. They show no interest in patients…wellbeing, feelings…including one who has waited since 7.00am.
I and two other patients asked during the morning what would happen next. The nurses provided no commentary for us as they clerked us and dealt with us. The answers we received were peremptory.
Some of the other staff have been good and kind. One lady in theatre was friendly and smiled and tried a bit. There was little concern for how I, the patient, felt though from anyone, on the ward or in the theatre. Theatre staff were not at all rude, just not interested in the patient’s feelings or experience. They talked to each other. Ditto on the ward.
I had to ask what was going on in theatre at the different stages of the procedure. It’s my body, damn it!
In the early afternoon I suggested nurse clean my finger before testing it…she grunted and did not do so, just did the test.
……..
What are those 6 Cs?
They seem to have forgotten that patients are people, not items.
….
14.10
Nurse says “… Sit up…” The rest, if there was any, was not spoken so I could hear it. She did not smile or look at me, just came to the back of the bed and raised it.
……..
Communication…person centred care…dignity…information… I saw none of these in my bay today, and little enough when I was in theatre.
What’s up with the QE UHB hospital?
Are you all so demoralised that you have forgotten why you work there? Who you work for?
I am not a number!
george rook 