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.

…….

3 thoughts on “Imagine a different world

  1. Hi George,
    this is a really interesting post. I too hope that people living with any kind of condition will one day receive a more humane integrated care that fosters both well-being and participation.
    There are a lot of organizations and NHS policy-makers across the world currently working at this very concept. Hopefully, your dream will come true sooner than we think!
    I’ve twitted your article on my Twitter profile (https://twitter.com/elo_novilunio/status/555289890829893633)
    Thank you and greetings from Italy

    Like

  2. Hello George. Tru here. When we (DAA for USA) were thinking about composition for our film to be shown at Academy of Neurology, i remembered this blog entry of yours, and it is partial trigger for the direction of the film we are putting together. THANKS !

    Like

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