As I travel down to London in a wet and windy Friday, I find myself reflecting on the 6 days I have spent at Woodbrooke.

For me it is my version of Wendy Mitchell’s Keswick, a place of respite from the world of Dementia.

It’s an opportunity to leave Dementia at the door, to start each day in silence at the Quaker meetings, silently reflecting, to sit in the gardens enjoying the peace and bird song.

It is also a form of respite not just for me but for family as well.

It is important to remember that family get the diagnosis as well, roles within relationships change, new challenges and frustrations appear over time, anger and sadness can produce its own challenges.

We are still the same person the day after a diagnosis as the day before, over time we change outwardly but inside we are still the same person, it is just there is a physical change to our brains, slowly shrinking to about a third of its size.

Gradually over time, more and more decisions are made for us not with us, the gradual belief that it is not appropriate for us to do certain things.

Yet we may still want to go to a , continue taking part in an activity, with a hobby, church service/Quaker meeting.

There is a real danger that by denying a person their right to continue doing the things that they enjoy, will have a negative effect on their mental health.

As a recent social media suggested, may be sometimes it is the embarrassment of those around us rather than our perceived abilities that stops us doing those things.

As this chronic terminal disease has progressed, we may lose the ability to express our unmet needs.

Imagine reader, someone coming up to you in the street for directions, you only speak English and they can only speak say Russian.

They know exactly what they are asking you but the words are in Russian.

You do not understand Russian and with the best intentions you try to work out what they are saying and they become frustrated.

You could work with them, Google for images of places of interest, Google Maps or Google Translate or other alternative ways of communicating.

In fact you take the easier option and make the decision to point left assuming that is the direction they wish to take, when in fact where they need to go is right.

Just a simple example of making a decision for, not with, ignoring an unmet need of a person for the benefit of yourself.

It has certainly been beneficial spending time there and I will be back there soon, if only for a couple of days.

As things are progressing, it is becoming more important to take time out, it is not a miracle cure but for me it can help at this time.

It may be a little like King Canute trying to stop the sea encroaching on the beach, it is inevitable and I suppose that one day the tide of Dementia will win the battle.

But rather than being sat in a chair as Canute did, I will try to stem the tide of Dementia for as long as I can.

To quote my friend Chris Roberts I may have Dementia but it doesn’t have me… yet.

There had been plenty of rain overnight, but the rain stopped and started all morning.

After breakfast and checking out of our rooms,  we started with a Mindfulness session with Agnes.

The mornings session started with a debate around various questions, I forgot to make notes but I think that after the debate, there was something about Change Theory and a possible project for the Pioneers Group, the detail long lost.

It is hoped that the Dementia Enquirers project puts people living with Dementia in the driving seat of Dementia research, as Tony Husband’s cartoon below depicts.

At then end of the meeting, there was time for one last group photo:

Once lunch was over, we said our goodbyes and we bundled into taxis to await our trains, to different parts of the country, at the station.

Sadly, Mr Dementia was waiting at the door and had started playing his tricks.

At the escalator, dealing with the steps with their parallel lines and moving was a challenge.

Trains were delayed “due to a car hitting a bridge” but I eventually made it back to a wet Sheffield where our puppies were waiting impatiently for my return.

Reflections on 6 days at Woodbrooke

” Dementia Alliance International is pleased to announce we have been accepted to host a Side Event at the upcoming 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD) at the United Nations in New York on June 13, 2019.

We are honoured to have a number of co hosts supporting this event, and to be supported by the United Nations and World Health Organisation, as well as the Australian government. “

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The side event is a significant step forward in the representation of people living with Dementia at the highest level.

Dementia should no longer be seen primarily as a mental health condition, rather that mental health problems manifest as in the later stages of the disease, as with Cancer Heart Failure, Stroke and other Chronic Terminal Diseases.

The United Nations has reframed Dementia as a Cognitive Disability

In a BMJ Article:

“Reframing dementia means presenting dementia to the patient as a disability that can be accommodated and emphasising the persistent abilities”

In the Australian Journal of Dementia Care, Kate Swaffer writes

The United Nations, through the CRPD Committee, WHO Dementia Committee and International Law via the UN CRPD has also brought forward significant universal rights to people living with Disabilities including people living with Dementia.

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Dementia: the leading cause of disability

DAI Side-event during 12th Session of the Conference of States Parties to the UN CRPD

” In 2019, the Dementia Alliance International (DAI) is celebrating 5 years of existence, and at this Side Event, we recognise the progress that has been made by people with dementia in the advancement of the rights of persons with dementia, as persons living with acquired cognitive disabilities.

Through the side-event, DAI aims to highlight the progress made towards claiming their rights as persons with cognitive disabilities over the past 5+ years, aiming to highlight dementia as a disability, and identify areas of further collaboration between the members of DAI and its international partners and all relevant stakeholders, including United Nations agencies.

The overarching theme is of social inclusion and health, which are two of the determinants of well-being, both of which are being systematically denied to people with dementia all around the world, including in the developed countries.

We will hear from an eminent list of speakers, on the rights of persons with any type of disability, including dementia, to full and equal access to the CRPD, and specifically on the right to rehabilitation and to Universal Health Care.  “

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The event has now finished but you can watch a recording here

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Speakers:

They are honoured to have Mrs. Catalina Devandas Aguilar, the UN Special Rapporteur on the rights of persons with disabilities to open the Side Event.

Other speakers will discuss the relevance of their work to Dementia as a disability; e.g. Bethany Browne from Human Rights Watch will discuss the abuse through chemical restraint of people with Dementia living in USA nursing homes, from the Human Rights Watch report, “They Want Docile.”

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening the Side Event

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “Quality Rights” 

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

Kate Swaffer, Dementia Alliance International, Chair/CEO: Closing remarks

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The side event is a significant step forward in the representation of people living with Dementia at the highest level.

The United Nations, through the CRPD Committee, WHO Dementia Committee and International Law via the UN CRPD has brought forward significant

Overnight it rained and rained and …

Tuesday brought a chilly wet morning with the rain continuing but unable to spoil the peace.

It’s was a peaceful morning, chatting to one of the volunteers and just sitting in the garden.

Philly Hare and I spent some time putting up while Rachael Litherland got the room ready before everyone arrived before lunch.

After lunch, we gathered in the Art room to start the Dementia Enquirers meeting.

If you have not heard about Dementia Enquirers reader, it is a project putting people living with Dementia in the driving seat of research.

Too often, people living with Dementia are seen as participants of research and researchers may not understand that people living with Dementia can be involved in the design, development, running and reporting of research, something this project aims to change.

The afternoon was spent, deciding which applications for research funding from DEEP groups should be recommended for funding, the National Lottery having the final say.

The decision making process began slowly by we soon got into the swing of it,accompanied by the crack of Philly’s metaphorical whip.

That evening from around 6pm we spent time with members of the advisory group discussion ssinf different aspects of the project.

It was a late finish to the day, after the Epilogue , I had an online meeting at 10:39pm which went on until past midnight.

Day 6

Petition – Pay Carers an Allowance Equivalent to a Fulltime Job at the National Living Wage – Finishes 19 June 2019

This is a national disgrace!

 

Please sign this Petition

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The sun was up with the dawn chorus ushering in day 4 at Woodbrooke

Over breakfast the discussion continued on the course content over the weekend, the lady I forget her name, still feeling the same but she was checking out this morning and then off to visit family before returning to Australia.

After breakfast I went to the library to read some of the Quaker pamphlets dating back to 1654, some written by George Fox, sadly to the sound of the Sycamore tree being felled across the car park.

The challenge of reading as you may know reader, is something I have to deal with, moving words, following text/lines etc but it came with the the challenge of the words of the day, some with different spellings and s replaced by f.

However, it was a fascinating insight into a world so removed from the social media, image orientated world we live in now.

After lunch the sun was out and I spent time in the garden but the clouds were beginning to build up.

Philly and Rachael from DEEP arrived in the afternoon along with Tom Shakespeare from the Advisory Group in the evening.

Once the rain started in the afternoon it didn’t want to stop but it brought a new rhythm to the garden.

After attending the Epilogue, it was time for bed.

Day 5

A Mixed Day at Woodbrooke

After yesterday’s blog was published, 3 events happened.

In the first I misread the course timetable and ended up missing the afternoon session, it wasn’t until the session was nearly over that I realised my mistake.

The second was struggling with a tap.

Having washed my hands, I couldn’t work out how to turn the tap off, turning it left and right, pushing it down, pulling it up, so frustrating.

I gave up and I dried my hands to go and seek assistance, but as I turned to leave, it turned itself off.

This was nonetheless a surprise yet a relief at the same time.

The third was that the rain stopped and the sun came out with blue sky, which had been absent since I set off on Friday, to brighten the evening sky.

The sunshine continued Sunday morning and slowly cleared the dew from the lawn.

There was some sad news in that a Sycamore tree at the entrance to Woodbrooke is to be cut down tomorrow and an Ash tree adjacent to Holland House is to be cut down next Monday.

They are showing signs that they are at risk of falling, maybe dating back to the time of George Cadbury and Woodbrooke becoming a Quaker study centre, hopefully making way for new trees to witness the next hundred years or so of Woodbrooke history.

It took a while to process the evening session of the course on Saturday.

The presentation, usually given to military personnel and shortened to fit the time constraints of the session was quite unsettling.

With its telling of a gang rape and it’s resolution followed later in the presentation by some unrelated images which were inappropriately presented with no warning of their content.

The session ended subdued and it was left to the Epilogue to lift the mood.

It include a passage from St Paul followed by a translation of the same passage from the Aramaic text, the same passage presented in two completely differing ways.

The first session on Sunday morning was quite a dark affair, which didn’t appear to embrace the sensitivities of the group.

Understandably, the discussion over the story of a woman gang raped by 14 men was quite emotional and my mood did not lift.

I am still unsure as to the relevance of the story, being an event some 34 years ago and it’s resolution, in view of today’s social media driven world.

As I sat in the garden with my coffee, I felt as I once did in those dark days after my diagnosis and took the decision not to return for the final session.

With the warmth of the sun and the aid of Beethoven and Mahler through my headphones, my mood lifted and peace returned.

At supper, I spoke to someone else that had been on the course and she was, in her own words, “quite disturbed” by those two sessions.

So not Mr Dementia playing tricks on me, my responses to those two sessions were real, evidence that feelings are real and lasting for people living with Dementia.

I’m glad I did the course although I wasn’t expecting the rollercoaster of emotions it brought.

Was it Spiritual, I’m not sure.

Maybe naïve in thinking “Spiritual Activism” was to be a calmer more subdued topic.

Time will tell if I have learnt anything but that wasn’t the point.

To live with Dementia and take on a challenge which in the days before Dementia wouldn’t have needed a second thought, was the aim.

As the rain begins to fall here, I finish with this note.

As the Channel 4 programme 9pm Wednesday evening will also show, there maybe life after a diagnosis, the possibility to take on new challenges or continue doing sone of the things we have done before, within a persons abilities where appropriate.

A diagnosis may not be the beginning of the end but the end of the beginning.

In @Seeds of Contemplation” Thomas Merton wrote:

“The problem of sanctity is finding out who I am…

If I never become what I am meant to be

But always remain what I am not

I shall spend my whole life contradicting myself

By being at once something and nothing

A life that lives and is dead”

Day 4