Dementia: Unbelievable

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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’

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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.

Image result for Dennis Skinner Quotes Picture

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!

Symptom Progression and Strategies 2016 December

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A very interesting post by Tru.

Truthful Kindness's avatarTruthful Loving Kindness

Tru here.    (Sorry; it is not a glitch; my brain is just not working well enough to come up with a graphic.)  I realize it has been a month since I have last written a blog.  There is a good reason these have been less frequent;  Doctor and I just call them “events”, but current theory is that I am having tiny strokes.  This is supported by my MRI, and part of my current diagnosis is “mild to moderate cerebrovascular disease”.

First event was probably mid-February 1999 (year before they first pulled my driver’s license and awarded me permanent physical and cognitive disability).  Most recent was about 10 days ago.
Frequency has slowly progressed from every few years, to every year, to every few months … then every month, and now three events in six weeks (every two weeks).  Consistently, after each event I experience almost a week of dramatic fatigue and…

View original post 1,439 more words

Dementia: Nationalise Southern Cross

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  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

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Normms again:

 

Image result for Picture of norman McNamara

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

Dementia: You Never Can Tell

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I was rather taken aback on Friday when I met our social worker and he told me that a Best Interest Meeting was still on the cards.  A few days later my feelings are ‘bring it on’: it’s time to wipe the slate clean and have a wide-ranging discussion about the options for Maureen’s care and accommodation.  However, I’m not convinced that the expense of a BIM is justified when there is appears to be consensus on the way forward: certainly  amongst family members.  In fact, I think it would be relatively simple to tie up a few loose ends and move forward on a fresh footing.

On Sunday morning I was pessimistic about the prospects of a  proposed surprise family visit.  When I heard that six additional bodies were going to be in the house I panicked. My caution was misplaced and a well-planned visit went exceptionally smoothly.  Even though she slept for a long time after the visit I’m sure this  enjoyable occasion will remain in Maureen’s memory for a long time.  She may mix up names and families, but very positive feelings will still be retained in her emotional memory.  Although she hasn’t mentioned the visit again since they waved us goodbye yesterday afternoon and headed north.

I am also rethinking about making for the door as soon as carers arrive.  Whenever I’m out of sight and Maureen is unsure where where I am she is frightened.   She is frequently worried that I’m going to leave her for good,  despite me providing  constant reassurance, she thinks I’m in the market for a younger model:  nothing I say seems to shift her from this nagging doubt about my loyalty.

My loyalty to Coventry City is being stretched to the limit.  It’s not because the Sky Blues are on a bad run: the club is in chaos and the sooner SISU the current owners  sell up the better!

I’m yet to decide what to do when Girl Monday arrives this morning.

 

 

Dementia: Banishing The Box

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Image result for Banning television pictureMaureen and I have made a decision to banish the box.  The two televisions we have in our house will not be switched on until further notice.  We hope this will stop Maureen’s bad dreams and confusion about involvement in all sorts of frightening situations.  I will take similar action to avoid a risk of the sundowning that took place yesterday.

When I removed Maureen from  Ashgrove Care Home several important items were missing.  Some have been found but slippers that have sentimental value  have not turned up.  As is generally the case the replacement I purchased were seen as inadequate.  So I thought that if I took Maureen with me into Grimsby we couldn’t fail: a big mistake!

Mrs Dementia was back with a bang on our return home as sundowning reared its ugly head  My lovely wife didn’t know where she was and I was Public Enemy Number OneP . With no help at hand, I had to take shelter and tough it out until the cold night air and eventually a short sleep saw the Wicked Lady off.  The lesson from all of this is: stay local when the light is fading

Common sense, always an approach of our social worker, has prevailed over Best Interest matters.  He has won the debate in this arena and insisted on the least restrictive option: husband and wife staying together in their own home.  So we meet this morning to review our Care and Support Plans in the light of Maureen’s current presentation.

With some reluctance, I have used the facilities of PALS to lodge a complaint about the Officer chairing the Best Interest Discussion.  When professional staff appear to lack any understanding of how to be fair and reasonable; do not heed your warnings, then there is little alternative but to use formal procedures to address your concerns.

I thought this superb song which was written by Normms MacNamara,  diagnosed with dementia in his early 50’s, was a fitting way to end this post:

Please download this song to help it get to Number One for Christmas.

I’m posting early for Christmas this morning and I’ll be back on Monday.

 

 

Feedback… for better or worse

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Kate Swaffer who lives by my dear dad’s mantra: ‘tell the truth and shame the DEVIL’.

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

screen-shot-2016-11-30-at-6-51-52-pmWhen I am conscious, I strive to be a nice person, but, I also always strive to tell the truth, and to provide (positive and sometimes negative) feedback on things done well, or comments on things  I may feel or think could or should be done differently. That does not mean I am right, merely that I have an opinion, which is 100% something everyone is entitled to.

I’m also reasonably upfront when I feel hurt or offended – the point being, that it is my feelings I share, and not who is right or wrong. Of course, being up front with feedback or feelings can get me (or you) into trouble!

Occasionally, some friends have said after providing me with (negative or positive) feedback, ‘Apologies for the lecture!’ I responded to one recent piece of feedback and apology for the ‘lecture’ like this;

I like them! It is unfortunate so few can take any form of criticism from others…

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Dementia: Paying The Price

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Image result for Amazing Susan Macaulay Picture

The above photograph is of Susan Macaulay, fondly known as AMAZING Susan.

Image result for Amazing Susan Macaulay Picture

Yesterday, I paid the price for not taking Susan Macaulay’s  advice to audio record all official meetings with officers of the Local Authority.  It would certainly have saved a lot of time arguing the toss with those who don’t seem to understand the difference between minutes and notes of meetings.  They also appear to suffer from memory issues and are unable to record the substance of important procedural points in meetings. I will give those concerned 24 hours notice from 9am this morning to get back into line or I will progress this matter formally.

I need to record that I have never experienced anything like this before in all my years of trade union representation, political involvement, and community activism.  I have always been treated with respect and could depend upon honesty from my adversaries even when the gloves were off!

An olive branch is now on the table with a genuine acceptance that a Best Interest Meeting is no longer needed.  The crisis is over and a meeting on Friday will discuss the support that is needed for Maureen and me to continue living together in our own home.  I have accepted the advice of Focus Adult Social Work to have an advocate with me at this meeting.

From today I’m going to take another piece of advice from Susan Macaulay who suggests that I post far too often.  Therefore, from today I will only post on Monday, Wednesday and Friday.  I’m sure that a lot of our story is no different to the route that others take on this unforgiving journey.  Releasing myself from the keyboard four days a week will give me more time to focus on my prime task: minimising Maureen’s distress.

Do you care?

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George Rook, spot on as always.

georgerook51's avatargeorge rook

Let’s start with a question…

Do you care?

image

When people care things happen.

When people care they make things happen.

And When people have personal linkage to dementia they really care, and they get involved, and make things happen.

You all have personal linkage and you all care. And you all are making things happen.

You are a social movement.

Social movements are about people who care getting involved and making things happen.

“Never doubt, said Margaret Meade, that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does”.

We are disruptive.

We have to be disruptive.

We don’t like the status quo.

We don’t want to fit into what others have decided is right for us.

We’re a challenge to existing structures and authorities and power holders.

And they don’t like it much. Why don’t they like it?

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