Dementia: ‘Where’s My Dad?’

Maureen woke several times during the night in distress.  I spooked her after a toilet break when she let out a deafening scream fearing someone had come out of the cupboard to attack her.  A little later, she was concerned about the whereabouts of her mum.  A short while afterward she was complaining that they were wanting her to sleep with horses.  Then she was crying for her dad so I sang her a song he used to sing for her:

On Friday I bit the bullet and cancelled our forthcoming trip to Thoresby Hall to celebrate my birthday.  After a lot of consideration, I decided it would be unkind to subject her to a long car journey and three days in a strange place.  Perhaps, the time has arrived to find a way of celebrating every day!

Dementia: Be Wary!

 

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Lorrie B warns us in her latest BLOG that Big Pharma is preparing to market the latest treatments for dementia.  Her advice is to be wary!

 

Dementia: Transforming Adverse Conditions

 

There are many times during the day and night when I feel exhausted with the constant struggle to know how to deal with aspects of Maureen’s presentation.  Listening to the teachings of Dekyong; particularly the one above always help my motivation to seek new ways to support my dear wife.  I’m really grateful that we now have a carer on Wednesday evenings so that I can attend meditation classes in Grimsby.  I  am also about to book another few restorative days at Madhyamaka Buddhist Centre early in March.

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The visualization of the sign at the entrance to Madhyamaka helps me to cope in the middle of the night when Maureen wakes up distressed wanting her mum.

Dementia: Happy Valentine’s Day

As you will see Maureen was delighted with her Valentine’s Day present this morning:

 

Seeing the joy on her face this morning has persuaded me to go ahead with my birthday plans for next week.   I have had a chat with Thoresby Hall and they assure me they will do all they can to support us during our stay.   Positive risk-taking remains the way forward here we will never subscribe to ‘Prescribed Disengagement’.

N.B. I hope my editing of the photograph has shared  Maureen’s joy without compromising her independence.

 

Dementia: Wanting To Go Home

Maureen woke early this morning crying that she wanted to go home.  She said that she felt useless here and could cope with anything when she lived at home with her parents.  I’m going to see if following Bob DeMarco’s advice eases her distress:

Dementia: What A Disgrace

 

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The National Audit Office Report on the state of adult social care is 55 pages long.  It tells us nothing new.  Anyone working in the sector or in receipt of care could have confirmed the damning conclusions quoted below:

‘The one and a half million people working in adult social care in England provide essential support to adults with care needs, yet the care sector is undervalued and its workers poorly rewarded. Providers are having increasing difficulty recruiting and retaining workers, and the number of individuals with some level of unmet care needs is increasing. Despite these highly visible challenges, the Department does not have a current workforce strategy and key commitments it has made to both enhance training and career development and tackle recruitment and retention challenges have not been followed through. There is no evidence that the Department is exercising oversight over
local authorities and local health and care partnerships for their responsibilities relating to the adult social care workforce. As a result, the actions taken by the Department in its oversight role have not demonstrably improved the sustainability of the workforce and so have not achieved value for money. The Department needs to address this
challenge urgently and give the care workforce the attention it requires so that the sector has the right people to provide consistently safe and high-quality care.’

 

 

Dementia: ‘Don’t Get Old!’

The following article is reproduced with the kind permission of the author:

Dynamite…
News and Comment from Roy Lilley
There are whizz-bangs, fireworks, explosions, detonations and blowing-up.
Yesterday’s report, from the National Audit Office was a boom, bang and blowing-apart of social care policy.
I don’t think I have seen such an excoriating dissection of policy, ever.  Here are some extracts: 
  • In 2016-17, the annual turnover of all care staff was 27.8%.
  • The vacancy rate for nurses more than doubled between 2012/13 and 2016/7. 
  • Since 2010, regulated adult social care establishments have to have a registered manager… in 2016-17, the vacancy rate was 11.3%.
  • The Department does not have an up-to-date care workforce strategy and roles and responsibilities of the bodies involved in delivering care are not clear. 
  • The Department cannot demonstrate that the sector is sustainably funded. Between 2010/11 and 2016/17, spending on care by local authorities (including funding transferred from the NHS through the Better Care Fund), reduced by 5.3% in real terms
  • Around half of care workers were paid £7.50 per hour or below (the National Living Wage is £7.20). An hourly rate of £7.50 per hour equates to an annual salary of around £14,625, before tax. 
  • Four-fifths of local authorities are paying fees to providers that are below the benchmark costs of care.
  • The Department does not have a current workforce strategy and key commitments it has made to both enhance training and career development and tackle recruitment and retention challenges have not been followed through. 
  • There is no evidence that the Department is exercising oversight over local authorities and local health and care partnerships for their responsibilities relating to the adult social care workforce.
The DH have made a response to all this but it is so puerile, I can’t be bothered with it.  
In a move, the day preceding the publication of the report, Communities Secretary, Savid Javid gave local authorities a £150m bung for next year.
All this against the background of Northampton Council, if it were a business, would be on the edge of doing a Carillion and ten other councils up to their necks in irrecoverable debt.
What does this mean?  Well, there is an annual social care funding gap of about £2.3bn.  Unlike the NHS, local authorities must balance their books each year.  They cannot carry forward a deficit.
A fairer-funding review is on the way.  A green paper on the future of funding adult social care has been pulled from the Treasury and given to a Minister in the DH.
Local government is skint.
The knock on effect; to make savings councils have changed their eligibility criteria for receiving adult social care, consequently the number getting care has dropped by a quarter.  After 2014, the way the data was collected has changed, now no one knows what’s going on.
It’s probably fair to say about 900,000 elderly frail people, in receipt of no care whatever, are refugees in our own system.
And, the NHS is propping up social care.  Central government funding for councils was cut by a third during the last Parliament. Of the £16bn LAs spend on adult social care, £2bn came from the NHS.
So, from what I can discover those are the facts.  The ugly, stripped-pine facts.  Facts of neglect, nonchalance, unconcern and a cavalier disregard from a blasé government which neither we nor the older people in our society deserve.
I don’t know what to say… this government is drifting, it is losing the intellectual high ground, it is not facing up to the big challenges.  
 
It looks to me like government has given up on its people….
 
It is shelving problems, delaying answers and procrastinating.  We are watching the infrastructure of care crumble away. 
On June 7th 1983, in the back of a car on the way to a speech in Bridgend, Neil Kinnock scribbled some notes.
His voice hoarse from campaigning he delivered the speech of his life.
He concluded with;
‘I warn you not to be ordinary, not to be young, not to fall ill… I warn you, not to get old.’ 
 
… dynamite.
Have a thoughtful weekend.

Dementia: Sharing The Joy

 

Lots of joy in the last few days with thoughtful support from local people:

  • A Heating Engineer who brought warmth back to our house and found time to engage Maureen.  He saw I was struggling when she ‘wanted to go home’ and tried to distract her by inviting her to watch him as he serviced the fire.
  • An elderly neighbour who popped across to tell me she hadn’t forgotten us but had been confined to quarters with impetigo.
  • A local man who wanted to know how we were doing who just happened to mention was expecting further surgery. I was aware that he was already recovering from the removal of a kidney!
  • The staff at the local Branch of Lloyds Pharmacy who always give Maureen a warm welcome when she has her blood pressure checked.
  • Maureen’s beautiful smile this morning when I tracked her down after she had moved from sleeping beside me to the sofa in the lounge.

As Kate Swaffer says life with dementia is better than expected!

Living with dementia is better than expected…

I can’t wait to meet Kate Swaffer to personally thank her for helping us to see that a diagnosis of dementia is a new beginning rather than the end.

 

 

Kate Swaffer (she/her) Kaurna Country's avatar

If people would proactively and positively support us to do so, and stop telling us all to go home and prepare to die, via aged care, living with dementia can be far more positive than I ever expected. I was interviewed in Singapore last year when support the Singapore Alzheimer’s Disease Association in an article in the Straits Times which you can read in full here. There are a few very minor errors in content, and having my age of diagnosis noted differently in two places, but overall, it is a really positive, respectful and well written piece. A pleasant change to work with a journalist who wants to write the truth, with no have hidden agendas.

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Dementia: A Moving Song

 

 

Lyrics:

An old faded photograph, is hanging on the wall,
All dressed up, Dad by her side, standing proud and tall,
Now she shuffle’s when she walks, she can’t stand up straight,
Her dinner falling from her spoon, can’t help how her hands shake. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

She loves to tell me stories, often the same one,
The night Dad snuck out from the house, for love about to come,
And finding her there sitting, on the front porch swing,
Handed her a metal washer, as a promise wedding ring. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

I know the news will come, she’s with dad once again,
But I’ll make my weekly visits, sit down reach for her hand,
For there’s nothing I’d prefer to do, on a Tuesday night,
Then hold her hand and listen, to the stories she recites.

There’ll be other faded photographs, young mother’s babes in arms,
Fathers standing by their side, all are safe and warm.
They, too, will have their stories, but if they can’t make the words,
I will read them in their pretty eyes, and they’ll know that I’ve heard. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

For there’s nothing I wish I could do, on this rainy night,
Than to hold her hand and listen, to the stories…
of her life.

SOURCE:

  • Written by Alice Hesselrode and performed by Gregg Steiner