Sunday Musings -19 Aug 2018

This weekend has been a challenging one for me.

On Friday I put some eggs on to boil, yes reader, I know I’m not supposed to touch the cooker, but was trying to help.

I went to the shops to get some milk and when I got back my wife told me that some cardboard boxes were next to the cooker and had caught fire, luckily my wife noticed before it took hold.

Saturday morning, I woke up just after 5am and the fog of Dementia was waiting for me with avengeance.

I liken these times using Greg O’Brien’s analogy “On Pluto”, for me my body is on earth but my head is far away through the fog on Pluto and it would be 4 hours before I could venture downstairs.

EarthFromPluto

My daily trip to the shops cancelled as the challenges would be too great, later I turned off Social Media and the TV and waited in silence as my head made its slow journey back from Pluto.

This morning the fog of Dementia waited for me again but I was able to rouse myself after a couple of hours.

Over the weekend I have remembered how relaxed I had been last week in Birmingham at the Dementia Diaries Meet Up last week and I am now going to cancel all my Dementia based activities this week in favour of spending some family and me time.

My blog will continue, I already have some articles ready to publish as I cannot always find the words to write them daily.

Dementia will still be there in a weeks time and there will still be many battles and abuses to be fought but for now my own personal battle will come first.

If you are interested in Greg’s book it is called “On Pluto: Inside the Mind of Alzheimer’s”

OnPluto

To finish with, a couple of quotes from my favourite album:

“Every year is getting shorter.

Never seem to find the time,

Plans that either come to naught,

Or half a page of scribbled lines.

Hanging on in quiet desperation,

Is the English way.

The time is gone.

The song is over.

Thought I’d something more to say..”

Time

“You lock the door and throw away the key

There’s someone in my head but it’s not me.

And if the cloud bursts thunder in your ear.

You shout and no one seems to hear.

And if the band you’re in starts playing different tunes.

I’ll see you on the Dark Side of the Moon..”

DarkSide

Posted by “Pink Floyd – Steve” on Twitter

 

Dementia Diaries Meet Up Day 2

Following from yesterday, I woke early and once ready got a coffee and sat in the grounds before breakfast, it was a bit cool in the breeze but just right other than that.

It was so relaxing looking down toward the pond

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We all gathered for breakfast and after that, Wendy and I sat with Amanda to answer her research questions before the morning session started.

We heard from Fran Hamilton an Occupational Therapist and another Twitter friend I had not met before, who enjoys transcribing the Diaries talking about her experiences and emotions with the Diaries.

After Fran it was time for a “Dementia Diaries Live” performance of some of our diaries with Dory, Wayne and Shelagh, a new idea to bring the diaries to life, something I had done myself last month.

Philly took the final session about opportunities to influence, where the diaries can be used in a way to change peoples perceptions and their awareness of our lives with Dementia.

Then it was a lovely lunch. The food there is wonderful, prepared by the chefs with produce from the estate.

After lunch we were given labels to write a few words about our 2 days which we tied to a tree and then it was the group photo

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After that it was time to say our goodbyes, I got a photo with Peter Berry and his wife Teresa. Peter by the way reader does a weekly video on You Tube about his life with Dementia, now in its 59th week.

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This links to week 1 of Peter’s videos

Then it was time to wait for our taxi back to the station with Rachel.

We had time to wait so we all met up for coffee, Rachel checking that everyone made it to their trains and a last chance for a photo with Wendy and Dory.

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Rachel took us to the escalator for our train, we said our goodbyes and descended to the platform to await our train.

Of course the train was late and later still by the time we got to Sheffield, I left Wendy to wait for her connection and made my way home in a taxi.

It was a wonderful relaxing couple of days with friends old and new but over too soon.

All the time we were there we had left Dementia at the door waiting for our journeys home.

We could be ourselves and make mistakes without being judged, with no one to say “You Don’t Look Like You Have Dementia”

The Dementia Diaries family is truly a community and while we were at Woodbrooke, Dementia was left in the cold while we had a warm feeling of understanding and friendship.

Don’t forget reader to have a listen to some diaries at https://dementiadiaries.org/

Dementia Diaries Meet Up

Tuesday morning, the taxi came to take me to the Railway Station, the breeze as I left the house, a welcome relief from the heat of the last few weeks.

No surprise the train was late but I was able to join Wendy Mitchell for our journey to Birmingham for a Dementia Diaries Meet Up.

If you are not already aware reader, Dementia Diaries https://dementiadiaries.org/ is a website where people living with Dementia upload audio diaries about their lives which are available for the public to listen to.

It was good to catch up with Wendy and we had plenty of time as the train went slowly at times and we were late arriving at Birmingham New Street.

We made our way up the escalator to a smiling waving Rachel Niblock who had met us to guide us via taxi to Woodbrooke House.

Woodbrooke House was founded by George Cadbury in 1903 and is the only Quaker Study Centre in Europe, set in beautiful grounds next to the A38, although apart from some traffic noise you wouldn’t know you were near the centre of Birmingham.

We had some lunch catching up with friends and Twitter friends I hadn’t met before.

After introductions and housekeeping we were shown to our rooms which were lovely as were the staff, very helpful and then we were back for the main part of the afternoon.

We were introduced to Professor Amanda from Maryland USA who had joined us to do some research. Amanda spoke with us about Dementia Diaries, technology, how to better design technology for us and how it benefits us. Over the 2 days, Amanda would interview us all for her project to get our individual views.

After a break we talked about how we felt doing our first diaries and how to promote them further to get more people involved as there are only about 50 of us doing them at the moment.

Rachel then talked about her role as the “Editor”, how she listens to them all and how she finds them emotional at times. She talked about how there have been a few occasions when, for whatever reason she didn’t feel able to put a diary on the site and had contacted the diarist and how there had been an occasion when someone was obviously distressed and this had been followed up with the assistance of Philly Hare.

We all know Rachel and feel she is doing a fantastic job for us and we all trust her.

Wendy Mitchell said that the Dementia Diaries web site could become a valuable historic document.

The session over we had a quiet hour before Dinner, time to chat and relax before the evening Bonfire.

We all sat round the Bonfire for about 2 hours chatting, eating toasted marshmallows and singing songs with Rachel and Amanda doing a rendition of Let it Go from Frozen.

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As the fire died down, it was getting cool and time for some well deserved sleep.

Being in a different place that night some of us found it took time to finally drop off but sleep finally came and a new dawn followed.

 

Sunday Musings – 12 Aug 2018

Recently, Parliament passed the EU Withdrawal Bill, which was given Royal Assent on 26th June 2018.

Director of Liberty, Martha Spurrier said:

“Hundreds of MPs put protecting the Prime Minister ahead of protecting their constituents’ rights tonight. As a result, ordinary people will now have fewer legal tools to fight back when Parliament puts the interests of the powerful ahead of equality, fairness and human dignity.

“This marks a needless step backwards for the UK, weakening legal protections for LGBT equality, privacy, children’s rights, and the rights of people with disabilities. We need to consider what kind of country we want to be – whether we accept that a post-Brexit Britain is a country with fewer rights and a diminished position as a global leader on freedom and liberty. Rights lost aren’t easily won back, but we will keep fighting.”

It was an opportunity missed to strengthen rights and fully incorporate the UN Convention on the Rights of Persons with Disabilities into law.

Frankly reader, I do not care whether you are a leaver or remainer.

The facts about recent Referendum about Europe are:

January 1973 – After the European Communities Act was passed in October 1972, the UK became part of the European Economic Community (EEC), no Referendum

June 1975 – Referendum to confirm joining the European Economic Community (EEC).

November 1993 – As a result of the Maastricht Treaty the UK became part of the European Union, again no Referendum

June 2016 – Referendum to leave EU

March 2019 – UK Leaves EU no Referendum

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Currently, the debate is all about self interest and scoring points over each other rather than a reasoned discussion looking at the wider challenges facing our Nation come the end of March 2019.

Posts on social media remind me of being in the playground at Junior School, may be all those PPI claim adverts on TV will change to claims against peoples comments on social media after next August, after all, even in cyberspace we are governed by the laws of the land.

There is no informed debate about what will happen to ordinary people in the UK after Brexit.

A couple of examples of where there needs to be an informed debate are:

EU Judges Can “Interpret” Withdrawal Bill However They Like

Brexit: Losing care staff from EU could force disabled people from their homes, report warns

We are seeing a return to the divisive 1930’s, where minority groups such as immigration, religion and disability groups are blamed for the ills of society.

In relation to disabled people in Germany:

“The Nazis claimed that the social and economic problems that Germany experienced in the 1920s and early 1930s were due in part to

the weakening of the population created by an unfair burden.

The Holocaust and disabled people: FAQ – frequently-asked questions

“Laws passed between 1933 and 1935 aimed to reduce the future number of genetic “inferiors” through involuntary sterilization programs: 320,000 to 350,000 individuals judged physically or mentally handicapped were subjected to surgical or radiation procedures so they could not have children. Supporters of sterilization also argued that

the handicapped burdened the community with the costs of their care.

Nazi Germany 1933-1939: Early Stages of Persecution

As then the media has joined in with articles saying the young shouldn’t pay for the old, now wanting increased taxes on over 40’s and to take way the money and property of the old to pay for social care, that the disabled are a burden on society.

Hold on, aren’t we supposed to be an inclusive society.

Besides if you take the money and property from the old, what will the young inherit, who then will pay for their care.

Disability Rights UK has a page that links to articles about Brexit and Human Rights

Dementia is recognised as a disability by the UN.

The UK is signed up to the United Nations Conventions on Human Rights AND the Convention on the Rights of Persons with Disabilities but still we are not treated as equals with other disabilities, chronic terminal diseases.

Assessments for disabled benefits, council tax rebate, travel passes etc still do not recognise Dementia as a disability.

The weakening of those rights continues with the Mental Capacity Amendment Bill

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It is sad that the wartime ethos of make do and mend of our Grandparents has been replaced by greed fanned by the flames of media that in turn affects the opinions of so many.

Their support of inclusive community as opposed to divisive communities, where everyone was welcome and supported even if their views could be influenced by an elitist view of empire.

The alarmist headlines and the articles that influence opinions of readers one side of the debate or another. the latest being there will be riots after Brexit.

The almost daily articles about Dementia, how to not get it, how to reverse it or a new cure that do nothing for someone living with Dementia or their family but sells papers.

The media perceptions of some one with Dementia being 80-90 years old, with wrinkly hands, hunched over and drooling, leads to comments such as “You don’t look like you have Dementia” and persons with Dementia being challenged when using a Disabled Parking Space, Toilet, seat on the bus.

No one seems to look behind the headlines to disseminate the facts

Well that’s my musings over for today reader, you may agree or not that is your right, as it is my right to be heard even if I have Dementia.

Time, where does it go

Time, where does it go

I was catching up on emails this morning, when I realised we are in August.

What happened to July?

Time Doesn’t appear to have any meaning at the moment.

Days roll into days, weeks into weeks

For me, the memory of July is a blank

No blogs for several weeks, some partly written

Reliant on my diary and notes

To remind me of the things I have done

I was at the Global Disability Summit in London

I thought it was last week but its nearly 3 weeks ago

Most of the detail consigned to my notes

The memories of my time there return in short flashbacks

I went shopping with my wife on Saturday in M&S we had breakfast there,

On Monday we were in Cole Brothers for some lunch

I swore blind we were in M&S

How our Dementia’s play tricks on us.

In the News – July 2018

My mother favours assisted dying. Now she has dementia I’m not sure I agree

How design is helping people with dementia find their way around

BBC The Truth About Dementia 2017 – Living with Dementia, Chris’s Story

I’m ageing disgracefully. Let’s hope I’m even more of a laughing stock

The DWP drove through a controversial welfare reform off the back of some very scant evidence

‘It made me depressed’: how poor housing costs the NHS £1.4bn a year

‘It’s Almost Like a Ghost Town.’ Most Nursing Homes Overstated Staffing for Years

Teenage volunteers make dementia residents ‘feel alive’

Disabled people could slip through net in universal credit move, says charity

Charities fail to tell MPs about clauses that ‘prevent them attacking McVey and DWP’

Adult social care services on brink of collapse, survey shows

Nearly 8 million people providing care for family members without pay

The NHS social contract has been broken – by children refusing to look after their own parents 

We baby boomers are an easy target

‘Granny dumping’ case to be heard as businessman accused of abandoning American, 76, to get him free care

DWP silence over ‘thousands of ESA claims lost in IT black hole’

Rewatching old football matches helps dementia and mental health, medical experts say

Civil Society Forum – Day 2 Update

McVey’s U-turn means DWP will pay at least £100 million more to disabled claimants

DWP is asked why ‘not fit for work’ universal credit claimants are being sanctioned

Patient watchdog ‘very concerned’ by leaked dementia care report

Watchdog’s ‘issues of concern’ over regulator’s treatment of PIP complaints

While Brexit dominates, the crisis in social care is deepening

The UK government’s hypocrisy in hosting a global ‘disability summit’ is about to be exposed

Four opposition parties demand DWP answers over WCA deaths ‘cover-up’

‘I’ve lost my man to dementia’

Boy, 4, befriends Nottingham dementia patient, 91

Painkiller used for dementia ‘could make symptoms worse’

The care home residents proving it’s never too late to learn a new language

Figures finally show how government slashed spending on rail access scheme

Doctor in Netherlands ‘asked family to hold down euthanasia patient’

Global Disability Summit: DPOs from global south call for new beginning

Potential Alzheimer’s disease treatment fails trial

UN Calls Out Australia For Allowing Forced Sterilisation Of Women With Disabilities

Taxi ‘hero’ praised for looking after woman with dementia

Global Disability Summit: Anger over Mordaunt’s bid to redefine inclusive education

Britain Split on Whether Human Rights Abuse is a Problem

Women’s Alzheimer’s test needed as superior verbal skills mask onset of the disease

Ten minutes of social interaction improves wellbeing in dementia care

Should we force the terminally ill to travel abroad and pay £10,000 for a painless death?

Global Disability Summit: Mordaunt retreats from UK’s ‘global leader on rights’ claims

Holidaying MPs have kicked the social care crisis down the road – and that’s a scandal

Woman killed herself after series of NHS trust errors, jury finds

Local Government Authority (LGA) launches it’s own green paper on social care – Alzheimer’s Society comments

Health Secretary accused of ignoring dementia 

Office for Disability Issues ‘taking no action’ to halt closure of DPOs

 

 

The University of Sheffield’s Dementia Futures 2018 Conference

On Tuesday, I went with other members of the South Yorkshire Dementia Research Advisory Group to the Dementia Futures conference at Sheffield Institute of Translational Neuroscience.

SITRAN

The conference, in it’s third year, is a challenge to PhD students at Sheffield University to present their Dementia research in a non-academic way, so that professionals and people living with Dementia can understand their presentations.

It was supported by the Alzheimer’s Society and the Medicine, Dentistry & Health Research Staff Association (MDHRSA).

David Reid and Julie Simpson opened proceedings and kept things going throughout the day, plenty of humour in amongst the housekeeping and keeping things running smoothly during the day.

Sandra Baker, an Alzheimer’s Society Research Network Volunteer also spoke about her role with the society’s research efforts.

There were 13 students involved, 7 gave spoken/visual presentations and the other 6 produced posters about their work.

Some of the presentations and the posters were easier for me to understand than others but that is the way with Dementia reader,  we all have different experiences/challenges and we all didn’t have the same opinions of the presentations.

If you are one of the PhD students reader, take heart, they were all important examples of research and it will be interesting to see their conclusions at the advisory group.

As members of the research advisory group, we were asked to judge both types of presentations and we chose 1 poster and we had a tie for the best vocal/visual presentation.

The day was also an opportunity for me to introduce the new Dementia UK representative for Admiral Nurses to various people from the University, Alzheimer’s Society and others

Charlotte Harris, is developing Dementia UK services across our region and is interested in bringing Admiral Nurses to Sheffield, which would form one part of post-diagnosis support in Sheffield for people diagnosed with Dementia and their carer/family.

All in all it’s was an enjoyable an informative day and the air-conditioning was a blessing on a hot day.