Category Archives: General

Dementia: You Never Can Tell

 

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

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 One. 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.

 

 

Dementia: Paying The Price

Image result for Amazing Susan Macaulay Picture

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

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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.

Dementia: Solving The Crisis In Social Care

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Roy Lilley has provided immediate solutions to the crisis in Social Care in today’s Newsletter:

‘Close the CQC it hasn’t improved quality, costs a fortune and demotivates all concerned; recognise technology takes us beyond the clip-board era.  
 
We can, now, answer the question; ‘how did we do today’, by plugging into data and key indicators, measurable in real time, with the use of technology we can all see.

 

Pay and train family members as carers, to look after the frail elderly at home.  Pay net of tax, provide respite.  

 

Create tax-sweet savings bonds for whole families to pay into; syndicating the costs of care for frail elderly relatives.  If, when the time comes, there is a residual in the bond allow it to be used, tax free, for education and house purchase for younger members of the family’.
Roy’s practical ideas on how to solve the crisis in the NHS are well worth reading!

Dementia: Being Upfront

Image result for Being Up Front PictureI have now left professional staff in no doubt about the outcome I’m looking for at Friday’s Best Interest Meeting.  Maureen and I want to stay together and I will play no further part in any plans to put her into permanent care. However, I would want the meeting to come up with a safe solution for Respite Care.

There has never been a satisfactory outcome when Maureen has gone into Respite Care.   On her birthday I found her bruised and battered in a place that a Specialist Doctor said was likely to lead to a further deterioration of her condition.  Then she escaped from another Residential Home and refused to move from the Centre of Cleethorpes until I came to pick her up.  A later attempt resulted in a phone call to inform me the police had found her when the Care Home were not aware that she was missing.  Finally, I visited her at the aforementioned  Home in the latest attempt at Respite and the staff were unclear of her whereabouts.  Eventually, I found her in what is called the ‘new build’; a suite of rooms yet to be brought into commission.  She was shut in an unlit room in an unsupervised part of the building. Following this incident, this area has eventually been made inaccessible.

I think there are serious questions to be asked about the monitoring of  Homes where we have sought Respite with the support of the Local Authority.  Maureen has been at risk on four occasions and there are issues about the reaction from a number of quarters.  Consequently, I’m in the process of seeking legal advice on how my wife is being put at risk when we are paying the going rate and anticipate a duty of care.

It has taken a while for me to comprehend why Maureen keeps saying that ‘I ‘ve tricked her or I’m attempting to trick her’.  I think it is her way of saying that I have sold her a pup – saying: ‘Respite will be good for her when it has clearly not’.  I have given her my word there will be ‘no more trickery from me’ and that from now on we’ll  stay safe together!

 

Dementia: ‘Until Death Do Us Part’

Image result for Social Care Facing Collapse Picture

Social Care is on the verge of collapse as Roy Lilley outlines today:

‘What’s gone wrong?
Two things.  The cash anticipated from government, on the face of it, is in line with their promise… pick it apart and it is worth, in ‘real-new-money’, about half the headline figure.  Treasury legerdemain.
The second; in the 100 or so weeks since the Plan’s publication… the collapse of social care.  Growth in demand from the frail elderly is in line with forecasts.  Having them marooned in hospital, waiting to get home wasn’t.
No one predicted the speed with which social services would, effectively, go broke and implode, nor foresee the stream of care providers closing down’.

 

Maureen and I made a vow at Coventry Registry Office: we aim to keep it!

Dementia: You’ll Never Walk Alone

Tom Schuller now a Professor has always encouraged me to share what I have learned on this blog.  He was a Senior Lecturer when I was one of his students at Warwick University almost 30 years ago.  His supportive guidance eased me through a Masters Degree in Lifelong Learning and the Management of Change.

This Blog has always been part of my coping strategy; it has aimed to  be an open account of our journey.   On occasions, I have pushed my luck and may have shared a little too much detail: thanks to the goodwill of others I have got away with it.  I hope that readers will understand my need to depersonalise my posts from now on and not use names or photographs without the prior agreement of the subjects.

To return to Tom’s challenge I ‘walked through a storm at 2.30 this morning’ whenMaureen didn’t know where she was; who I was, and was terrified.  As always I accepted her reality and tried to give supportive answers to her questions.  Then I gradually introduced objects that confirmed our togetherness, such as presents to one of us from her children.  As a cup tea worked  wonders I fired up YouTube and introducing my dad into the equation I put music connected to the RAF and remind Maureen how much he liked her.

Luck or intuition from YouTube then put the icing on the cake with Last Night of the Proms on screen.  I remembered Maureen’s affinity with classical music and we were still going strong 3 hours later.

The lesson from all this is that:

There is always someone, somewhere to help you on this journey.

Footnote: Now in Maureen’s reality: ‘it must be almost midnight and I’ve had that music thing on for ages and it’s time to go to sleep’.  I hope I will be able join my wife in a little more shuteye.

 

 

 

Dementia: The Fight Within

I have a chest infection and have been prescribed antibiotics.  My sinus passages are blocked and I’m taking paracetamol to try to keep my temperature down.  Maureen is far from well with symptoms that need checking on Monday with a home visit from our G P.

I’m using this  poem by Normms McNamara  (diagnosed with dementia 6 years ago at the age of 50) to think about how she might be feeling about her dementia:

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‘THE FIGHT WITHIN

You read my posts, you see my pics, but cannot hear my thoughts,

The fight within, rages on, so desperate and so fraught,

I`m disappearing within myself, a little at a time

Every day my mind grows smaller, such a human crime,

Some days i sit for hours, with nothing in my head,

As the day drags on, its the evening that i dread,

Short burst`s of clarity come to me, every now and then,

I write them down, send off to you, and then i`m back again,

All alone within myself, getting ever smaller,

Suffering the blows, of Dementia`s brawler,

So if one day i disappear, before i say goodbye,

Always know your friendships, in my heart forever lie’

 

 

Dementia: ‘I’m Still Winging It’

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If my performance as a Care Partner for Maureen was being observed by football supporters I’m sure they would be singing : ‘you don’t know what you’re doing’.  This familiar retort when the referee makes a bad decision would ring out on our terraces here on many a day.  As the man in the middle, I could argue that I have my badge, an NVQ Level 2 in Dementia Care, and I’m not going to offer the whistle as I know my wife better than anyone.

Although I’m qualified to care for Maureen there are shortcomings within my skill set.  Throughout my working life, I have predominantly been a Group Worker even though my Initial Training included Counselling.  More importantly, I have not had a supervised placement in this field or an opportunity of shadowing an experienced practitioner.

Time is never on your side when you are a Care Partner for a loved one with dementia.  You may feel you have got the hang of it until one day you are caught out as the goal posts have shifted .  I sometimes feel I’m not keeping up with the game as Maureen’s presentation throws up new challenges.  It is fortunate that telephone advice is so readily available.

In the 90’s I sought support from a therapist  when I was ridden with guilt following divorce and  separation from my children.  Jenny used Transaction Analysis to help me put my situation into Eric Berne’s framework – always advising me : ‘if something isn’t working – try something else’.  When the going gets challenging here it is one thing I try to keep in mind .  Unfortunately, I’m far from match fit at the moment with a chest infection taking its toll but those antibiotics will kick in soon and I’ll be BACK!

Dementia: Chest Infection?

This infection is now becoming worrying.Image result for chest infection pictures

I have an afternoon appointment at G P Out of Hours.

It is a possible that I have a chest infection.

‘Girl Saturday’ will tend to Maureen.

I’m told she is an  experienced carer.