Passing on my hobby horse

Have you noticed in recent months that everyone passes on?

We don’t die. We pass on.

Sometimes you pass away, but the fad is now that you pass on.

This is my hobby horse today. 

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I ride it roughly, curse it, kick it, but it just trots on calmly. Where to, I ask?

And more to the point, where do we pass on to?

If you pass away, at least it means you are gone. Don’t know here. But gone. With a sense of never returning. Of finality. 

But passing on seems more active, more positive, as if there really is somewhere you’re going.

Now, we don’t really talk about what may be beyond death. Nor about the actual act of dying.

We should.

If you really truly believe we go to Heaven, whatever that is, then yes you pass on. But make no mistake…you die first.

If you don’t know what you expect, or if you expect oblovion, then…you die. 

If you pass away, you imply a soul that moves out of your body, away. Don’t know where. But it disappears. Or just dissolves, disintegrates. Like life itself.

If you die you cease. Your body stops working. Your brain stops working. You are…no more. 

And, my hobbyhorse tells me, if we call it anything other than dying we are hiding from death.

One of the six elements of the dementia model is “dying well”. That might give you pause for thought. 

Dying well? 

I think this means being prepared in your mind, and free of pain in your body. I don’t think anyone is ever free of the pain of memories, and regrets. 

I think dying well means dying in a place where you feel at home. With loved people, loved animals and loved things around you.

I’d like to die in a wood. Preferably in spring or summer. Preferably during the dawn chorus.

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But when I am dead, I don’t actually matter. It’s those still living that have feelings and practicalities to deal with. And we need to have talked about these before it happens. We need to understand what each of is needs when the time approaches.

If we ignore death because it is uncomfortable and unknown we create bad deaths.

Those we love will not know and respect our wishes. Nor will they know or understand their own.

If dying well is to mean anything we should all have prepared for death.

Spiritually and practically and emotionally.

“Dying well” in any strategy or model for dementia should include trigger points which encourage people to talk about death. Health and care staff should regularly open the subject, and when you are ready to talk you will. But probably sooner than if death is ignored and hidden away.

Faith helps a few, but most of us either choose not to believe or do not know whether to believe, in another world or a higher being, life after death or hell.

Me, I think that there is either nothing at all, or it will be good. Why would you have a loving god who sentences you to eternal damnation?

But that is the future…or not. What matters is living now – and being prepared for dying.

So let’s embrace life. Let’s s take risks. Let’s have joy. 

And lets embrace the only certainty in life…that we will die.

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Why are we so white?

Why are we so white?

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I had the great pleasure to travel to Nottingham yesterday to work with a small group at Trent Dementia. The travel was not a great pleasure, via three decrepit trains but two wonderfully helpful buses/drivers.

I met four lovely people, Jane, Shelagh, Jean and Ghazal. We were starting to plan an event in Nottingham to kickstart engagement between and with people living with dementia. There seems to be little going on there for PLWDs, no DEEP groups. although there is a DAA.  But I wonder how active it is as no one round the table had heard of it.

So we tossed around some great ideas, and focused down on having a number of small room meetings where people could talk about and share feelings about specific areas of living with dementia. We wanted to avoid a big auditorium type conference, as they achieve very little action usually. And people living with dementia need small groups and the chance to ask for clarification without losing track.

But then we got onto the cultural and ethnic make up of Nottingham. Four out of five of us were white and well educated and articulate.

How could we reach, and get people from, the rich mix of cultures to come to the event and any peer groups we set up? 

I understand that dementia is more prevalent in people of Asian ethnicity than white English. And they often live in a culture of keeping it hidden at home. And then, Afro Caribbean and eastern European populations? How do we reach these people? If white British people find it hard to find support, how much more difficult is it for them?

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Lets go further. My friends at SAND (Safe Ageing No Discrimination, Shropshire) have told me (and the DAA members) about some of the challenges they face. The LGBT community often live in fear of coming out, of explaining who they are, when facing hospitals, care homes, and other situations where they may and often do face discrimination and hostility. 

Why the hell should a gay person living in a care home feel they have to hide their identity, the things that make them who they are? And why are they not involved and engaged in the work we do, promoting awareness and dementia friendly communities?

And I’ll tell you what, unless we white straight people, who are usually the majority in many areas in commissioning services and managing providers, go out and find and talk to these people, they will continue to be in the shadows.

And that’s plain wrong.

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As with dementia, we are all different. All individuals, all with different lives. No one life is better or worse than another. 

And yet…we are such a white, straight, group of activists! We really must do better.

……..

Note: I apologise if I have in any way offended anyone in this blog.  There are of course fabulous exceptions to every thing I have said. 

I think I know what you think

Well. What a day!

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I’m on my way back from London after co-chairing the morning session of the GovConnect dementia conference, Towards 2020.

It seems to have become an annual thing, revisiting the progress made towards achieving the targets in the Prime Minister’s Dementia Challenge. 

As one wag said, the platform speakers were OBEs and MBEs and a senior civil servant, in the main. Policy makers and performance inspectors.

Apparently all sorts of good things are happening around the country, across charities and councils. 

NHS England has toolkits for CCGs to use to assess the quality of their dementia provision, and to improve it where its poor. 

CQC find that around 80% of care homes are good or outstanding.

89% of emergency A&E admissions aged over 75 are asked a question to assess their cognitive status, within three days of admission. (When they are really fit and healthy and oriented.)

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67% of those calculated to have dementia have been diagnosed. (They forgot that only 20% of those under 65 have a diagnosis.)

We have over 300 registered dementia friendly communities. (Oops, I meant registered as working towards…)

“Its very clear that progress is being made across all of the elements in the Dementia Challenge”, said the civil servant.

Hmm.

I was beginning to feel like a bystander at a groundhog Easter Day service.

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All is well with the world. We are doing well. We’re doing great things.

I’ve heard most of it before. 

Grand words and empty statements.

At the start I asked speakers to give us evidence of what was happening. Not just tell us grand statements. Evidence. Measures. 

So we got the diagnosis rate, and the CQC figures.

We did not get any CQC evidence about the quality of dementia care provided in these good care homes, because they don’t inspect and report on that. It’s not in their five domains.

We didn’t get the number of people who receive worthwhile, personalised support after diagnosis.

We didn’t get the number of those emergency admissions that were assessed and referred on for assessment, appropriately. 

Because the data isn’t being collected. It must be out there, but no one is looking.

We were told that 100,000 staff (somewhere?) have done Tier 2 training. And that everyone whose role has regular contact with people living with dementia should have done the Tier 2 training.

Over a million people work in the NHS alone. Add other care staff around the country. Say 1.5 million? We should get there by 2040.

Meanwhile, many people living with dementia and receiving care in the NHS or Care Homes or at home are getting lousy care. And many carers are getting no support.

So how are we getting on?

I think you know what I think. And I think I know what you think.

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If they asked us we’d tell them.  But that would be a little too uncomfortable, wouldn’t it?