Get back in your box

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I’ve been thinking about other people recently.
About how other people see me now.
How people react to me.
People I know, family, friends, people I work with.

I wonder who they see.
Is it me or is it a person with dementia?
Do they expect me to behave in particular ways, and look for these?
Have they written me off already?

I went public.
I want people to know what it’s like living with dementia.
I want to see changes in our communities.
I want more and better support for people living with dementia.

I am not unique.
I am sure what I feel and think is felt and thought by others.

So having put it out there I am happy for people to know I have dementia.

But I want them to still see me as I am.

Which is pretty much the same as yesterday, last week, last month.

Perhaps not last year.

“See the person, not the dementia”

Yep.
Don’t assume that every time I forget a word or drop something
I have taken another step into the abyss.

See me how I am now, not how I will be sometime in the future.

Remember what I have now, not what I will probably lose.

I’m still me.
I’m not a guy dying of dementia.

Most people don’t even think I have it!
“Oh I am always forgetting names and losing my keys…
I’m sure you can’t have that…”
(Which actually are unhelpful, when they tell me…
Two of the many things NEVER to say to someone with dementia.)

Just because I have been given a diagnosis I am still the same as ever.
My symptoms have not suddenly worsened dramatically.
I’ve got years of active life yet.
Remember the old advert.
PAL prolongs active life.
Substitute activity, social engagement, exercise…
Writing blogs!

I want people to acknowledge that I have dementia when appropriate, not to pretend it hasn’t happened.
But I don’t want them to change the way they behave with me and talk to me.

Sometimes I do feel as if my life has stopped, because I am now a person with dementia.
And as if that is how I am meant to feel.

But life has not stopped.
It hasn’t and won’t for a long while yet.
It’s good to know the disease, to say hello to it…
But then to put it back in its box
Where it belongs
Not a label on my forehead that no one wants to look at.

I’m still doing lots of stuff out there
In Shropshire, West Midlands, East of England…
And it’s my lifeline.

I’m still the same dad and husband…

I love meeting people I know, and new ones…
They’re all like old friends, close or not.
And it helps me forget that thing sitting in a box and pushing at the lid…

I don’t want people to feel sorry for me, to travel my journey with me…

I want them to see me as I am an
Just get on with what we are doing together.

And for ME
Read EVERYONE ELSE too.

See the person not the dementia

Support for people with dementia. Where is it?

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The dementia challenge

Bear with me. Here are some key statements from government policy in 2009 and 2012.

In 2009 the labour government launched their National Dementia Strategy. This included:

“Objective 2: Good-quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis…”

“Objective 4: Enabling easy access to care, support and advice following diagnosis.
A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.”

“One of the most clear and consistent messages emerging from discussions with people with dementia and their carers has been the desire for there to be someone who they can approach for help and advice at any stage of the illness – ‘someone to be with us on the journey’. Current health and social care services normally discharge individuals once the case is stable and the care package is being delivered. This is almost always perceived negatively by people with dementia and their carers, who, faced with a serious illness where there is inevitable long-term decline and increase in dependency, want to feel that there is continuing support available to them when they need it.”

“Objective 5: Development of structured peer support and learning networks.
The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.”

“Our vision is for the positive transformation of dementia services. It would be a system where all people with dementia have access to the care and support they need. ”
In 2012 David Cameron issued a national dementia challenge. His ambition statement included…

“People with dementia, their families and carers have told us what is important to them and what will help them to live well with dementia. They say they want to receive an early diagnosis and timely, good-quality information that will help them make informed choices about their care. They want the treatment and support they receive to be the best for their dementia and life, regardless of whether they are cared for at home, in hospital or in a care home.”

….

So here we are in 2015.

Diagnosis rates are certainly higher in the UK than five years ago, but very unlikely to reach the 66% target set out by Cameron. In my area we are at around 55% I am told.

The memory services that were developed as part of the 2009 strategy have been established almost everywhere. They provide relatively, quick diagnosis (or not) following primary care referral. In my case they provided a fair amount of information soon afterwards, mostly produced by the good old Alzheimers Society.

So that is real progress.

It’s the next bit that is still missing.
“They want the treatment and support they receive to be the best for their dementia and life, regardless of whether they are cared for at home, in hospital or in a care home.”

The 2009 strategy came up with a great idea.

“17. The role of a dementia adviser would not be that of intensive case management, as carried out by members of community mental health teams or outreach workers who go into people’s homes, or Admiral Nurses. Rather they would provide a single identifiable point of contact with knowledge of and direct access to the whole range of local services available. Their actions would therefore be to identify what the problems might be, and then to signpost and facilitate engagement with the specialist services that can best provide the person with dementia and their carers with the help, care and support they need simply and quickly. This remit would allow dementia advisers to work with the high numbers of people diagnosed with dementia in each area. They could work with both social care and health care services and be jointly commissioned by local authorities and PCTs.”
….

I wrote last week about my own feelings of anger and depression about my life with dementia. I received several supporting messages, including one from a person with dementia which read:

“I’ve not found one who does not feel the same way yet, George. It seems par for the course, sadly.”

Here in Shropshire we haven’t got Admiral nurses. Never been commissioned. Nor do we have an alternative equivalent. And we are not alone; relatively few areas have the admirable Admiral nurses. They could provide real expertise through their knowledge of the disease and the effects of living with it, for the person and the carer.

Nor have we got the “dementia advisers” envisioned in the 2009 strategy. They do exist in a few places, including the excellent Gnosall primary care project.

So what do I and others do?

When we feel miserable, desperate, need support, a listener, a helping hand…?

What do our carers do when they are anxious or angry or desperate?

What will my GP say to me tomorrow abut how I feel?

Increase anti-depressants? Well it may help, but not in the way that I want.

Refer me to a counsellor? Availability? Long, long wait. I want it now.

Refer me to a voluntary sector organisation? Doesn’t exist here because not commissioned.

Or a peer support group? Monthly dementia cafe ten miles away.
….

I’ll tell what should happen.

I ring the dementia adviser I am assigned to, and who I have been talking to and meeting since diagnosis. And we will talk on the phone,perhaps meet somewhere for a coffee and a chat.

And perhaps I would then be told about a group that meets every week, where people feeling the same can talk, or just listen, sit. And perhaps there’s a charity run group that has outreach people who visit when needed, or who can accompany me somewhere for a bit of fun, when I can’t see the way through.

All this needs to be bought by those who are employed to commission support and care for people with dementia and carers.

This is not rocket science. Just do it.
Please.

The 2009 strategy is sitting on a shelf on the internet. It will not gather dust, but the pixels are going blank. It’s not happening.

How are we going to influence, persuade, force CCGs (remember we employ them) to provide what everyone knows should exist?

We need to be in their faces.
At their meetings.
Demanding.
Explaining.
Telling our stories.

What they don’t see they can ignore.

They can provide wonderful reasons why it cannot be done overnight.
6 years x 365 = 2190 overnights.

They need evidence that it works and is cost effective.
Yeah?
Listen to us. Read what our stories. We’ve been saying it for years.
What’s the cost of attempted suicide, psychosis, acute depression?
What’s the cost of carers who can no longer cope?

And yes, you will have to decommission something to provide the dosh.
So find services which are less effective.
Don’t be frightened of taking action.
Because without courage and action nothing will change.

Spend OUR money on growing really efficient (bangs per buck) voluntary sector services.
For us.

Let’s get the 2009 vision done.

Make living with dementia better.

We can do it. Together.

If we have the will, courage and determination.

And the shared vision of a better world for people with a disease.

If it were Cancer…

 

I’m getting annoyed…

I wrote this the other day and wondered about publishing. Three days later I know it is not just a bad day thought. So…

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I have pressure in my head.
I am becoming angry about things I don’t like or that I find irritating.
Angry about becoming easily tired.
Angry about wanting to be angry with people.
But I’m keeping it inside.
So the pressure is growing.

I am becoming intolerant.
If I don’t agree I want to say so.
If someone goes on about something irritating I want to tell them to shut up.
Break the code of tolerance and politeness.

But I don’t.
I just keep it inside,
Silently.

And the pressure grows.

I think I have to be happy and chatty with family and friends.
When I just want to be tired and silent.

When I return home I return to my thoughts about myself.
About what my life is becoming.
About my diseased heart and my diseased brain
Causing me more and more pain.

I get annoyed about it.
That I cannot walk properly
That my back aches
That my chest aches
That I am out of breath.

That I can’t find things
That I get stuck in sentences
That I forget how to do things
That I feel I am becoming unable to keep up
And that before long I will not be able to take part.

When I am out working I lift out of all this.
Forget me and think about doing.
I talk to people about things that matter.
I enjoy casual conversations.
I listen to people about things that matter.
I try to change the world in little ways.

Then I return to my world at home
(Home is lovely but lonely inside my head)
And I go back inside my thoughts and my illness.

And at the moment my world is sadness, anger and defeat.

The proportions of my world have changed.
Before, I was small and everyone else was big.
Now, I am big and everyone else is small.
I see me all the time.

Once they thought the sun circled around earth.
Galileo was tortured and killed because he found that it did not.

I no longer have planets revolving around me.
I watch other people with their worlds, their planets, their busyness,
Circling, wheeling, colliding,
And I see mine slipping away.

And I cannot work out whether my brain disease is getting worse,
Or I am depressed,
Or I am depressed because of knowing I have brain disease,
Or I am depressed because of my brain disease…

It started the day after Christmas
When my children and friends left.

They went off to their planet systems, their busy lives revolving around them.
I stayed behind in my shrinking world.
And I couldn’t face it.

I still can’t.

I just keep busy, going out and working, meeting people, doing things.

At home my iPad is my shield.
I write, talk in email, tweet, find ideas, read…
Anything to keep my mind busy and off
Me.

I watch films when I am too tired for anything else
To dull the pain, keep it at bay.

At night I dream in fantasies of my life.
Grossly distorted memories
Some ugly, most unpleasant.

And I awake to my brain disease again.

And I wonder whether I will enjoy living again.

When I write the pain goes away.
The thoughts fade.
I make sense of it all for a while.
And I get back on my horse.

And when someone reads me and says
That was really interesting
I fill with pleasure.

(That’s not an invitation for gratification
By the way.
Just a truth.)

Imagine a different world

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Imagine…
I’m sitting in the consultation room at the memory service.

Over recent months I have had a brain scan, the third in eight years.
I’ve had my fifth mini-cog test and scored 28 again. But I know I’m not right.
I’ve had a day and a half of IQ and related tests to see which parts of my brain might not be functioning up to speed.
And I’ve waited a few weeks between each.
Bit anxious at times, though expecting confirmation.
Wondering what might happen next.
Work?
Driving?
Family?
Activities?
Yes, it’s been quite a long time.
Eight years since my first visit.
It was probably related to depression then, and work stress.
Take some pills. Relax. Stop worrying.
Not sure that worked…

Now it’s time to find out.
The doctor tells me the symptoms and brain scan show that I have mixed dementia.
Alzheimer’s and vascular dementia.
Early stages.

Oh God.
I was expecting vascular but not Alzheimer’s.

What will happen next?

First, we will get you on Donepezil, as this will probably reduce the symptoms of Alzheimer’s.

Second, you will see your GP and be assigned a care navigator to support you.
You’ll meet them and talk about your life, what you enjoy doing, your work, your family.
What makes you want to get up in the morning.

Then you will both agree a care plan, which will be kept online, and you will have access to it and be able to alter it when you want to.
You’ll be able to give access to anyone you choose, at any time.

Your navigator will be available by email, text or phone most of the week, including out of hours for emergencies. You can talk to them, have a moan, ask for their help, ask them to accompany you to meetings, perhaps at work or with health or social care professionals.

Your wife will meet them as well, and can talk to them about her situation, feelings and needs. They will help her find the resources or support she needs.

In fact, your navigator will be the person with whom you have most contact.

You’ll meet your GP when you need to, when there is something medical that requires his expert knowledge.

You’ll come back and see me once a year to catch up, but if you both think I should see you sooner that’s fine.

The most important thing, Mr Rook, is that you keep on doing what you want to do. We will make sure you get the support you need for this, when you need it.

I go home.
A bit non-plussed by it all.
Make an appointment to see my usual GP the next day.

At that meeting the GP talks about the support available for me to keep active and working. He explains that they have a care navigator who will be my main contact from now on, other than for medical things which require his GP expertise. He says that the navigator will provide lots of information about local groups, support, activities, information about dementia…

The navigator will also look after my concerns regarding my other conditions, heart disease, diabetes, high blood pressure, and will help me get the support or appointments I need. They will be the first person to contact in future.

He suggests I have a word with the navigator while I am there to make the first appointment to meet properly, and just to introduce myself.

We meet and talk for half an hour. I try to explain how I feel, but it’s still just sinking in.
I give a little of my background.
And we agree to meet the following week.

At work the next day I meet my line manager and explain what has happened.
He agrees that he had been concerned about my memory and ability to organise things.
We agree that I should visit their occupational health advisers in order to see what can be done to enable me to keep working.
He assures me that he wants to keep me on as he really values my experience and knowledge and skills.

And I go on working, with slightly reduced and flexible hours.
They provide an iPad synched to the IT system so I can organise my diary and emails wherever I am and don’t have to enter things more than once.
They agree that I can teleconference more often, instead of travelling two hours or more to meetings several times a month.
They agree I can work from home two days a week.
Next year I take an agreed extended leave of absence, unpaid, to travel with my wife.

I go on working for another five years, until I lose my driving licence.
I speak to my care navigator friend when I have a bad day.
They come with me to my meetings at the Memory Clinic and to several meetings about benefits and carer support.
They are here when we have a carer assessment.
They listen when I need to talk. They talk when I need to hear.

When I meet consultants, registrars, physiotherapists, GPs,
When I am admitted to A&E with chest pain,
I give them access to my care lab so they can read it and understand me.
I don’t have to repeat my story again. And again.
They know my history.

I’ve had a good eight years since I was diagnosed with dementia.
And I have done things that made living good.

Imagine…

But no.
I saw the GP three weeks later.
He did another mini-cog test, to establish yet another baseline.
He said there was nothing more to say.
Bye bye.

…….

Living with dementia at work

Difficult times for people at work and living with dementia. I retired before diagnosis, and can now see many of my colleagues knew my memory and inability to meet deadlines but actually did and said nothing. I did not have a happy departure, but I too would like others to in the future. If I can help with the toolkit let me know.

Which me am I today?

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I think the biggest challenge at work is the sheer mental exhaustion experienced from a relatively small amount of time in the office. My job centres around attention to detail. Trying to concentrate, keeping up with the everyday goings on, trying to shut out corridor conversations, coping with interruptions and having to start again if I am interrupted are some of the challenges I face. But the biggest change to come to terms with is the amount of time it takes to perform certain tasks – those that once took a minute now take (what seems like) forever. I can still do them, I just can’t do them quickly…..very frustrating and demoralising.
I’ve been trying short days in the office and making up my hours at home – sounds simple but the mental exhaustion just leaves me so worn out that I invariably fall asleep on the 90 minute bus journey…

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Just In Case: Patient-Led Solutions to the A&E problem

Future Patient - musings on patient-led healthcare

Like many people who spout rhetoric about the NHS, I am guilty of indulging in the blame game. Some professionals and policy makers ‘blame’ patients for ‘inappropriate attendance’ at A&E and we have millions spent on campaigns to urge us to ‘choose wisely’ when thinking about heading that way (assuming that we do not make rational choices).

Likewise, I can blame professional for thoughtless and ineffective policies and practices. Or, I can point the finger at ‘the system’ for being professionally-centric. Note that the notion of blaming ‘the system’ is itself a neat trick that casts a blanket of blame over others, without requiring us to be more precise about where the problem lies. It is also a familiar tactic for the traditional patient movement through which we can maintain an ‘us and them’ attitude and an adversarial posture towards improvement.

However, this one vexes me. I have been active…

View original post 1,214 more words

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Well, here’s looking at 2015 with dementia.

It’s been a thoughtful couple of weeks.
Christmas happened…lovely to be with grown up children and friends.

They departed cheefully into another event filled year.
I trudged into a long tunnel, a dark one, with dementia at the end.
They got on with their lives, heading upwards to whatever happens, they don’t know.
I looked down a hillside to what I do know.

It’s not a life sentence.
It’s not a death sentence.
I am me not the illness.
I am not a label.
I am not written off for scrappage.

I know all that.

But it is pretty certain knowledge of how things will go in coming months and years.

Is it better to know that or to live in ignorance?

Mostly I prefer to know.
Mostly I am positive.
Mostly I want to work to make life better for people with dementia.
Mostly I want to keep doing stuff out there.

But I’m finding it hard to get back into the work mode.
The going out most days to meetings, to sit and see observations, ward walks, dementia friends sessions, patients in control seminars…

Do I want to do this?
Is it having any effect?
Is any change happening?

Well I know change happens in small increments
Not Big Bang.
I know that a lot of what I and others do is about nudging, changing attitudes, opening eyes, harnessing values.

But I also know that I need to see some change now and then.
I need feedback from people I work with that it is worthwhile.
That things are happening.

I’ve been reading one or two blogs by people with dementia, courtesy of Truthfulkindness.

http://fb.me/76scBygYB

One guy said he no longer gives up his time to do stuff that doesn’t get results.
He’s learned to waste time.
To do whatever he wants.
Not to think about what if…

And I am close to that too.

Because I have limited time now.
I know where I am going.
Don’t know how long it’ll take.
But I know the destination.

Why would I want to give my limited time where I can’t achieve anything?
Or where I am not welcomed and listened to.
To people who don’t answer emails or follow up invitations.
To attend meetings where people just talk.

That’s over now.

It’s time to concentrate where things can be achieved.
Not to bang my head against brick walls.

I’m going to waste some time.
Deliberately.