Who on earth are you? (and other difficulties)

It is, of course, the disease underlying my dementia, but I am finding I cannot recognise people whom I have recently met. It’s happened twice in the last week. Both are people who were with me and with whom I spoke at meetings ten days earlier.

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Of course, I just admit I don’t know who they are and ask them to tell me. But it is developing into a habit!

Why am I telling you this?

Because I think there should be an awareness of this as a symptom, and that you may need to remind me and others like me who you are. If I look blank and you are expecting recognition, just quickly tell me your name and where we last met. 

I’ll be working through my back catalogue, paddling furiously under the surface, so my blankness is just me processing data, trying to find a match. Help me out.

….

I was at a meeting this morning about a great neighbourhood wellbeing hubs project in Telford. 25 people sitting in a circle, all speaking quietly in what seemed to be a sound absorbing room. And when introducing themselves there was a sort of reluctant mumbling which meant I couldn’t hear most of them. Yes, I have impaired hearing, or processing, or both, but let’s all speak up a bit. And give me time to work out the words that have just been quickly mumbled…preferably “spoken”. Clearly.

Dementia friendly? Nope, fraid not.

We were planning a neighbourhood event in the summer. Lots of small stalls, activity rooms, loud music…I pointed out that loud music would not work for those living with dementia. Ah. Yes. Agreed. Well we could organise a quiet room. 

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So plwds will be shepherded away on their own? I do hope not. They should be able to take part in activities, art things, cakes, watch and listen and talk. But if their sensory processing is bombarded with loud music they will not be able to. 

We do have a long way to go, don’t we! These good people want to be really inclusive of seldom heard groups, people living with disabilities, and those who do not feel able to access conventional support services. Which includes people living with dementia!

Please make it easier, not harder, for people living with dementia to remain engaged in their communities. Fun events don’t have to be loud!

….

The other thing to say is that I had an eye opening weekend doing DIY with my son. We work well together, him taking the lead, me being the old hand who anticipates what is needed before he has to ask. 

But I noticed several times that he thought up some simple solutions to little problems that I just could not imagine on my own. Like fitting a cut hole in a board for a plug over that plug without taking the plug face off. Dead easy! But I just didn’t see it. Twist the plug face.

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But, like failing to find a simple word answer in the quick crossword, these solutions just doesn’t occur sometimes.

It feels like some new elements of my brain are beginning to fail. I can’t recognise people I met last week. I can’t imagine a simple practical solution to a task.

I don’t actually feel any different at all. But I’m suddenly aware of a failing that demonstrates disease progression.

….

So please, just remember the simple stuff. Remember, if we don’t react as you expect it’s because we are thinking like mad for an explanation of what is in front of us or what we are hearing.

Speak clearly and loud enough for us to hear and understand.

And can that blasted, blasting music!

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Time for change in Dementia Action Week

Today I am posting a letter I have sent to our three Shropshire MPs, about 20 county councillors, and most of the board if Shropshire CCG.

It’s Dementia Action Week, and we all need to campaign for change.

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To Members of Parliament for Shropshire

21st May 2018

Dear Sir, 

Support and care for people affected by dementia in Shropshire

Dementia is the name for a group of symptoms resulting from organic brain disease. It is not a mental health illness. It is a disease. There is no cure or treatment, but several drugs can enable the brain to function more effectively and slow the decline in cognitive capacity. 

Some 3,700 people living in Shropshire live with dementia. Over 2,000 live in their own homes.

67% have a diagnosis. 

Around 3,500 family members provide support and day to day care for their family members living with dementia.

What support and care is provided after diagnosis?

For the younger and fitter people, there is almost none. And what there is is broadly not what people living with dementia want or choose. It is what organisations think should be provided, such as dementia cafes with organised group activities. No more than 300 people living with dementia and carers attend these “cafes”each year. 

People in Shropshire have a co-produced dementia strategy and model of care, agreed two years ago. But Shropshire CCG is not funding its implementation across the county. 

After diagnosis, people living with dementia are left in a wilderness of fear, bereavement and loneliness. Until they reach later stages, perhaps up to ten or more years later, there is little or no support. And what people living with dementia say they want is mostly to be able to go on living as they choose, and to meet and talk to others in their position. However, many withdraw from social contact for fear of getting lost, forgetting why they went somewhere, or being unable to carry on a fluent conversation with someone who doesn’t know them.

Peer support groups, led by and attended by people living with dementia, and others for carers, are key to wellbeing and therefore health. But these groups need a small resource to initiate them and keep them going. This is not available, so there are just three such groups for people living with dementia in Shrewsbury, Oswestry and Market Drayton, and none elsewhere, run by volunteers without any funding or support.

Shropshire CCG does not commission an Admiral Nurse Service, nor sufficient Dementia Support Workers, to provide a consistent level of support for people living with dementia and their family carers across the county. Yet Telford and Wrekin does both of these things.

Admiral Nurses are key workers in relieving the crises families living with dementia face from time to time. They are clinical experts and spread their expertise throughout the health and care networks they work in. They support families through a crisis by providing a single source of support, and they find solutions on behalf of the families when they cannot navigate the disconnected sources of support available. They get over the barriers which others cannot navigate.

There is strong evidence that an Admiral Nurse Service is hugely valued and respected by users, and that it is highly cost effective, saving up to three  times their cost in reduced admissions, social care, gp attendances, and related benefit costs. Not to mention reducing the terrible levels of distress that families go through when trying to care for a person living with dementia during a crisis. Across England there are over fifty Admiral Nurse services. Whether you can access these depends entirely on where you live: a post code lottery.

The Shropshire Dementia Strategy includes the employment of Dementia Companions (navigators) to support people immediately after diagnosis through to end of life, with support and contact provided as and when needed. These Companions would provide the needed support to carry on living as we choose, to continue to be engaged in our communities and the activities we enjoy. Like everyone else. Without this support many people living with dementia lose confidence, become frightened of going out, and withdraw. Their wellbeing is severely impacted.

And yet Shropshire CCG is refusing to fund these posts across the county. They are funding two small pilots in Oswestry and Ludlow, but with no commitment beyond 2018-19.

People living with dementia in the early to middle stages continue to live in their homes, and want to continue to be engaged in their communities. Without relatively inexpensive support they withdraw, become frightened of leaving home, and lose confidence. They then visit their GP more frequently, are admitted to hospital more frequently, and remain in hospital longer. They also are much more likely to be moved to care homes earlier than otherwise would be needed. They therefore cost the state a lot more money, and I’m talking tens of thousands of pounds, than if they received support to live in their community.

This is Dementia Action Week. I urge you to speak to Shropshire CCG and Shropshire Council and to tell them that they should be funding this support. If they say they have no funds, you can tell them that by spending on the support and services I have outlined they will save several times that cost in other services.

I would like to refer you to the five Dementia Rights Statements issued late last year, and a significant element in the Dementia 2020 challenge. 

https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/dementia-statements-and-rights

People living with and affected by Dementia have lawful rights under several national and international laws to appropriate health care in order to continue to live their lives as they choose. This is not optional. It is a human right.

You are a member of parliament representing people in Shropshire, and I urge you to put pressure on those entrusted with providing our health care (and paid by us to do so) to provide the funding necessary to support people living with and affected by dementia in Shropshire.

Yours faithfully,

George Rook

Chair of Shropshire Telford and Wrekin Dementia Action Alliance 

Member of the Three Nations Dementia Working Group

Facilitator of two DEEP peer groups

Living with early onset dementia

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Seeing is not believng

Where the hell did I put my keys?

Where’s the mustard?

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Why isn’t the tape measure in the drawer?

Have you asked these questions?

Have you got really narked by not being able to do a job that’s smole but impossible without the right screwdriver?

And you know where you’ve always kept it, don’t you!

But it’s not there. 

You ask your wife or husband, and the say they don’t know. They haven’t seen it. Where is it usually?

Have you used it and not put it back?

No. 

You must have have!

I haven’t…

And on it goes, round and round in your head, as you wind up higher and higher, angry to the point of exploding.

Your wife tells you to look again, but no you cant see it. And being told to look again annoys you because you did look already.

Do you think I’m stupid?

Sometimes you look again and you do see it. It was in front of you all the time. And you try not to admit it. But you know. You just know that it’s that dementia again. Seeing is not believing.

All your life what you see is your reality. But now you can’t trust what you see. It might be there or it might not. 

And if it should be there, but you cant see it, what else is there to do but assume someone has moved it? How else, after all, can an object move? 

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If I put the screwdriver back, like I have always done, it must be there. So you must have moved it. Or someone has stolen it. Or borrowed it. There is logically no other explanation. 

And if you tell tell me that you haven’t I won’t believe you, because, well, you MUST have moved it. 

….

Lets take that a bit further.

How would you, with all your senses intact, react to something being missing? 

Yes you’d go looking. You’d check and double check. And if you didn’t find it? It must have been stolen, or you left it somewhere. And you can remember where you have been so you ring up and check. Or go back.

But what can I do? I may not remember where I have been. I may not remember putting the keys in the drawer. Or the screwdriver in the bin. Or lending my spirit level to my son. 

So if my reality tells me it should be where it always is and where I remember it last being, well, then someone has removed it or stored it in the wrong place.

So bloody well tell me or find it for me!

Now I don’t want to accuse anyone if stealing. Or “borrowing”, with the implication that they actually nicked it without telling me.

But it’s the only explanation. 

And that goes round and round. It drives me mad. And I struggle to resist making the accusation. 

And it sours my feelings for this oersonperson. Because I KNOW they took my tape measure.

What do I do with all this? It’s in my head. Every time I want the tape measure I think it’s been taken and not returned. 

And then when I can’t find something else I think…now they’ve taken the mustard too. 

I don’t trust people who come into my house. They’re all out to take away or move my things. 

….

So next time you meet someone who has brain disease and is suspicious and tells you someone stole their clothes, or their money, try getting into their shoes. 

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Work out what their reality is. And find ways to help them understand. And if they cannot understand, divert them away to some pleasant experience or memory. 

And if you cant find what they want get another one for them.

If you do do find it, don’t tell them where it was, and that you don’t know how they couldn’t see it.

Just say, here’s another. Use this.

They’ll love you for it.