Category Archives: General

Dementia: Moving Forward

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I have never thought it necessary to do your ‘dirty washing in public’, so the detail of yesterday’s meeting with NAViGO needs to remain with those in attendance.  From my perspective, the air has been cleared and lessons have been learned which will be cascaded down within the organisation. It is reassuring that NAViGO has been prepared to listen to my concerns and put their hand up to acknowledge aspects of unprofessional practice. The written reassurances that  I received yesterday evening, lead me to feel optimistic that we will, once again, be treated with respect and person-centred care will resume.

It’s been another challenging night with a beautiful ending.  We began sleeping downstairs with Maureen waking up twice terrified by something or other.  We then moved upstairs in the early hours and eventually shared the marital bed: sleeping beautifully just like the good old days.

Maureen’s early morning concerns are that she might still be able to become pregnant.  Now that would be an immaculate conception that could lead to joint litigation against medics who would have real  problems defending their competence!

Dementia: Bad Dreams and Hallucinations

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Maureen has had a difficult night.  Her dreams have been vivid and frightening.  She has seen and heard things in the room we have been sleeping in that have scared the living daylights out of her.  This is hardly the restful night I needed before this morning’s meeting with Senior Officers of NAViGO.  Just to add to my difficulties my new Wireless Printer has lost its connection so I will need to take my Lap Top to the meeting.

Dementia: A Lovely Memory

I clearly gave Maureen a lovely memory earlier this morning.  She was sleeping in the chair and stirred as I came into the room and said: ‘it’s GrandDad’ and gave me a kiss on the cheek.  I have often heard her speak so well of her grandparents so this case of mistaken identity didn’t worry me and reminded me of this song:

I remember a West Indian friend of mine once saying: ‘I don’t care what they call me as long as they don’t call me late for dinner’.  As Maureen’s dementia progresses I don’t worry who she thinks I am as long as she feels safe in my company.

Dementia: A Silly Mistake

Image result for A silly Mistake PictureI made a silly mistake on turning in last night: I chose the wrong bedroom.  When Maureen woke in the early hours and found me in the marital bed she let me have it.  The onslaught lasted for over half an hour as I was told in no uncertain  terms what a s*** I was. Fortunately, I’ve now got a strategy for ‘cocking a deaf un’ so that I don’t absorb the vitriol and there was a bonus on-line.

Tara Quirke, in Australia, was on hand to sooth my troubled thoughts and offer warm words of encouragement -another Gem from Down Under. What she didn’t venture was I could have prevented the torrent by taking to the spare bedroom.  This will be my ploy in future to encourage ‘Mrs Dementia’ to stay in the closet so Maureen and I get a good night’s sleep.

The proof of this pudding is in the eating: Maureen has just joined me at the keyboard and I have eased her into the Girls Dorm.  She is a little unsteady on her feet this morning and feeling dizzy.  Her grip is strong and she can smile so I’m encouraging her to take further rest.  Just to be on the safe side I will relocate the Baby Monitor so I can hear her whenever she wakes from her slumbers.

Dementia: ‘Girl Friday and the One Down Under’

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I’m always pleased when the arrival of Girl Friday is pending.  She has been supporting us for over two years now and feels like one of the family.  Her contribution to our well-being continues to be considerable.  I have mentioned in previous blogs that by sitting next to Girl Friday I have learned the ropes of being a Care Partner for someone with dementia.

The other ‘ladies’ as Maureen calls them have all done sound work this week.  Their kindness is outstanding as they all go well outside their duties to minimise Maureen’s distress.  One of them has made Maureen a tea cosy in the red and white of Nottingham Forest.  Another brought along a puzzle book to entertain Maureen, whilst one of  her colleagues may have resolved the underwear crisis.  I could go on to describe how these wonderful ladies put the icing on the cake day after day.

The ladies all fill in a journal of their daily experiences here: a living record of Maureen’s presentation.  Unfortunately, their notes appear to be filed away – left unread.  Which puts into context the now postponed attempt at Memory Testing.  I continue to ask myself what is the point in such assessment when Maureen’s presentation fluctuates and a living record appears to be ignored!

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I understand that if a Best Interest Meeting ever takes place that my request to have Girl Friday in attendance has been heeded. I certainly hope that this hard working dedicated woman is paid for her troubles and treated with respect.  How ironic that the lowest paid member of our support team- on minimum wage –  might struggle to claim travelling expenses for further support to us!

The Chief Executive’s Office of NAViGO has advised staff that further contact is to be avoided until we meet on Monday.   It is good to know that we can still call on the Home Treatment Team if there is a crisis.

Today’s Good Music is dedicated to my cyber friend Kate Swaffer; our ‘Girl Down Under’: an amazing woman who highlights the need to ditch Prescribed Disengagement.

Dementia: ‘I Am The Way’

In an effort to add an air of lightheartedness to proceedings this morning I introduced Maureen to Loudon Wainright on YouTube:

I remember seeing Loudon live in Coventry almost 40 years ago.  The above video is well worth watching.

Dementia: Unbelievable

Image result for I dont believe it pictureI will be contacting the Chief Executive’s Office of NAViGO this morning to request that her staff do not darken our door until after our scheduled meeting on Monday.

Two Support Workers arrived, unannounced, at our house  yesterday evening to conduct the MMSE Memory Test on Maureen.  Fortunately, she was asleep and common sense prevailed.  Perhaps I should have told them that she had already graduated to the ACE 111 Memory Test last year  when the Memory Service determined that further testing was pointless because of their diagnosis of ‘dementia: predominantly vascular’.

A Specialist Doctor told me in July that Maureen’s condition is now classed as moderate to severe dementia.  There is a distinct risk that further testing will unsettle her as she will see it as  another step on the road to locking her up in a Care Home and throwing away the key.  I hope common sense prevails this morning: this is far from person-centred care!

The  approach to dementia has major shortcomings which we have to endure day after day:

  • The services for dementia are rooted in mental health.
  •  The experiences of those who care for Maureen on a daily basis are consistently overlooked or ignored.
  • Professional staff consider what is happening here from the wrong perspective: dementia is not caused by an affective disorder of the mind it arises from a damaged or dying brain.

The professional approach to what is going on here will continue to be UNBELIEVABLE while the current setup remains.

Maureen has woken this morning wondering why we are in a foreign country.  This was a familiar question in the days following stroke at the beginning of 2014.  I will seek an appointment with her GP this morning to discuss her presentation.  She is fortunate that there is someone who knows her well, treats her with respect, and will listen to what she has to say with an open mind.

Dementia: ‘Watch Thee Back Lad’

With a Best Interest Meeting on the horizon, there is much to be done.  I have a meeting with my Advocate this morning and an appointment with my Counsellor this afternoon.  This video from the Alzheimer’s Care Resource Centre is a helpful focus for what lies ahead:

I went to bed early last night and left Maureen downstairs.  I awoke at 2 am to find her sitting in an armchair.  She told me she has been helping a couple of ladies who were holding a sale on the sea front.  She believes she has disposed of some unwanted clothing.

Maureen’s diet has been interesting in the last few hours; a mince pie and some Christmas Cake. Her thoughts are concerning:  ‘I’m her husband; a miserable possessive old man’.  Apparently, we rarely do anything together; I come back here for food and then go out by myself.  My expectation is that she’s the little woman who stays at home and attends to my needs.

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Maureen is clearly travelling back in time to  a very unhappy era in her life.  It is very sad to see her in this mode and as  dementia progresses my role as her Care Partner becomes increasingly challenging. It is perhaps the time to heed sound advice from  Dennis Skinner ‘watch thee back lad!’

Postscript: Maureen thinks we are in London this morning.  She is angry that I have sold our house in Cleethorpes and brought her here against her will.  I will just have to vacate the room to leave her to her ranting!

Dementia: Nationalise Southern Cross

  I know I planned not to post on Tuesday’s but this can’t wait: 

For yer granny
News and Comment from Roy Lilley @ nhsManagers.net

 

Lady Day, Midsummer Day, Michaelmas and Christmas.  They are ‘quarter days‘.  The quarter days were the four dates in each year on which servants were hired and rents were due. 
The significance of quarter days is now limited, although leasehold payments and rents for land and premises in England are often still due on the old English quarter days.
Quarter days have been observed since the Middle Ages.  Accounts had to be settled, a ‘reckoning’ had to be made and publicly recorded on quarter days.
There is a reckoning on the way and it can’t be far off.  I shouldn’t wonder if the Christmas quarter day hasn’t got something to do with it.
It could be a fearful reckoning for 20,000 of some of our most vulnerable and frail citizens.
Last week, Four Seasons Health Care, the biggest care home operator, as reported in the £walled Times, told creditors that its £515m debt burden was;
 “… not appropriate for the long-term needs of the business”. 
In English I take that to mean… ‘we’re going broke’.  My guess is a whack of repayments will be due on Xmas quarter day.
Southern Cross is in the eye of a perfect storm.  Borrowings set at a time when the world was a different place, penniless local authorities cutting care home fees, the hike in the living wage and increases in utility, regulatory and other costs.
Margins in the care home sector are slim at the best of times and this is far from the best of times.  Rumour has it, the venture capitalists, who fund Southern Cross, are on a 12% return.  It’s a complex business.
Likely scenarios?
The lenders could take a hair-cut; reduce fees, payments and spread the life of the loans.  Putting aside all compassionate grounds for keeping this business going, I doubt they’ll do that .
Look at the future from their point of view; councils and the NHS are not likely to have more money in the foreseeable future.  Maybe a bung in the months prior to the 2020 election?
After the election the pressures and confusion of trying to wriggle out of the EU, the damage to the economy and uncertainty means the Treasury is unlikely to relax its grip on public expenditure.
The care sector is not (as venture-caps put it) a place ‘to be exposed in’.  Anyone with an ounce of common-sense would say; get out.
It might be possible for Four Seasons to find another funder.  A bail-in.  Borrow more money, over a longer period, at a cheaper rate; buy-out the existing debt… trade on.
There are two doubts.
The first; it’s unlikely that a new funder would take a chance on business so dependent on a public sector customer.  Councils are no longer the gold-plated payer they once were.
Second; I’m guessing; contractural arrangements would prevent a buy-out or switch.
Sorry but I think it inevitable; Southern Health will go broke.  They are struggling-on, causing all sorts of confusion and worry.  If you have a relative in a Southern Cross care home and you can, I’d move them.
What happens if they go broke?
The CQC have the responsibility for overseeing the financial governance and solvency of providers.   I wouldn’t trust the CQC with the Christmas Club money, never mind an opaque venture-cap deal.  
CQC chairman, ex-PWC honcho, Peter Wyman probably recognises the inevitable but will be powerless to stop it.
Prepare for thousands of frail people, wrapped in cellular blankets out on the street?  The CQC has done it before.
Too awful to contemplate? What would you do?
If debts aren’t paid, the court orders will start flying.  Homes will be repossessed and no amount of contingency planning on the part of local authorities, huffing and puffing from the CQC, or the industry itself, circling the wagons, will solve this.  There isn’t the spare capacity in the system.
The solution; nationalise Southern Cross, get on and do it now.  A one line Bill in the House of Commons, unopposed and passed in a day.
Let health and social care run local homes jointly, get them back on their feet and later, sell them back into the sector in small lots, at a profit.
Sound familiar?
Yup, we did it for the banks… now let’s do it for yer granny.

Dementia: Hollow Cry’s

Normms again:

 

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Hollow Cry`s

Hollow Cries from deep inside

Eyes that weep but cannot cry

Open mouth and yet no sound

Familiar Voices all around

Walking around in a dream

Nothing`s real, or so it seem`s

Waking nights, sleeping days

Eating meals through Foggy Haze

Un-Familiar mirror reflection`s

I`m never right, always corrections

All these things, and much more,

As dementia knocks at your door

Cc Norrms xxxxxxxxxxxx

Taken from my book “Silent Voices “

https://www.amazon.co.uk/Books-Mr-Norman-Mc-Namara