Dementia: SOS

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I sent up the distress flares by contacting Single Point of Access at 5.30 this morning with a request for a return phone call from Focus Adult Social Care.  A challenging evening led to a dreadful night with little sleep.  The dawn chorus from Maureen continued her incessant late night ranting:  her theme of being ‘abused, let down and frustrated by the behaviour of others now and throughout her life’  has continued unabated.

No matter what I’ve tried I have failed to distract and redirect Maureen from her current focus on always being ordered about and encouraged to take part in pointless activities.  This is clearly not the time to persevere with suggestions about showering or personal care.  A mug, thankfully empty, was hurled in my direction yesterday when I suggested she could consider stepping out of her PJ’s for the first time in over a fortnight.

I’m keeping my fingers crossed on three fronts this morning.  Firstly, I’m hoping that the Duty Worker from Focus will return my call and make a supportive visit to discuss options for additional support.  Secondly, that Girl Thursday is back on duty after a period of sickness and a familiar face will help Maureen to settle down.  Thirdly, when Girl Friday (Maureen’s hairdresser) returns from holiday tomorrow she might be able to nudge Maureen into the shower cubicle.

Yesterday, I was hoping that my Dancing Queen would let me lead on this ‘dance with dementia’.  This morning, I need other partners to help me to change the music and slow things down for a little while.


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Dementia: Enough Is Enough

Our builders knew that a storm was on the way yesterday and adjusted their plans accordingly.  They knew it would be pointless trying to lay bricks and sought safer ground to prevent being washed out on site.  If only I had such a luxury as a Care Partner and knew what lay ahead each day and could plan accordingly.

We had a lovely start to yesterday with an early morning call at the Spa Stores followed by a trip to a nearby farm to collect eggs.  Following breakfast, we ventured to Aldi and on to Freeman Stree Market to stock up on fruit and vegetables.  Once we arrived home the clouds descended and the storm broke over Maureen’s footwear as I had ‘stolen her shoes’.  The abuse connected with my felony continued until Girl Tuesday afternoon took over the reins as I escaped the downpour.

‘The weather’ in the evening cleared a little leading to a fine spell following haddock and potato wedges: my Tuesday Special.  Things brightened up even further with a warm spell following apricots and ice cream.  Then the clouds gathered before the storm broke following my encouragement to bring a new toothbrush into action as darkness descended upon us.  As the rain poured down I took shelter in the back bedroom to escape the torrent of abuse from Maureen about my expectation that she would join me in bed.

I’m struggling to make sense of the forecast this morning.  Maureen’s presentation is bewildering as she ‘has to make some clothes for a carnival’: apparently, something she is not good at.  I have tried to change her focus for over an hour but she is overwhelmed by her inadequacies on all sorts of fronts.

I would suspect that ‘the weather’ is going to be changeable today and I’m hoping for some brighter spells.  The builders will shortly be firming up the foundations for our extension. I hope I have laid the foundations for our morning by putting Maureen’s dancing gear on the bed.  I’m just wondering after tripping the light fantastic in the kitchen whether we could make it see our friends at Social Dancing this morning. ‘Enough Is Enough’ of the old regime it’s time to try something different.  How lovely it would be to take my Dancing Queen in hold this morning:


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Dementia: A Blast Of Reality

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In the last 24 hours, I’ve been faced with a harsh reality check on Maureen’s short-term memory. Yesterday, a few hours after I told Maureen that her mum was dead she was talking about sending a letter and going to see her.  Early this morning she was reluctant to get into bed with me because she didn’t know who I was.  I think she has already forgotten her focus a little later on about needing to be able to access her money so she could buy a toothbrush.  Her reluctance to engage in personal care or change her clothing continues despite daily prompting from all quarters.

Most people would argue that Maureen is treading a familiar path: the inevitable decline in cognitive function as her dementia progresses.  A minority suggest that it is possible to address cognitive decline or even reverse it.  Over the next few days, I want to review my interventions as Maureen’s Care Partner and consider if a change of approach might lead to some productive outcomes.

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Dementia: ‘Bless Her’

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I would gamble that if I mentioned Maureen’s behaviour this morning the locals would say ‘bless her’.  However, being woken just after midnight is not something I’m exceptionally pleased about along with being told  I’m a ‘nasty, horrible man’.  My sleepy response to her question about ‘where are the others’ led to increased vitriol.   When I suggested that she lay down in beside me in bed her response is probably best not repeated.

Once I followed Maureen downstairs she was in fits of laughter as she sang:

I wouldn’t be at all surprised if there isn’t a medical term for her early morning presentation and a tablet for it.  Maureen sang a few others numbers before she lay down on the sofa and went back to sleep.

My response to blood-curdling cries at 4 am were a little more conservative than my earlier attempts to console Maureen.   She had woken up feeling dizzy and scared.  My presence seemed to have a calming effect and she went on to aplogise for waking me as she was aware ‘that it would upset my wife’.  Then I risked it by confirming that Maureen’s mum was dead when she pleaded with me to tell her the truth.

A little later, when I tried to distract and redirect Maureen I was surprised by her response.  I had moved the conversation on to what to buy her for her birthday on the 26th of this month and she said ‘you have already given me my present by telling me the truth about my mum’.   She went on to tell me that she was fed up with people not answering her questions because they didn’t think she could cope with the truth.

I have decided to gently take Maureen up on her request to tell her the truth and see where it leads.  To an extent, I feel there is little to lose providing I do it in a way that attempts to minimise distress.  Unfortunately, my first shot on this front has not gone well when I suggested that Maureen sometimes ‘forgets’ to take her tablets it was greeted with abject denial.

The next ‘truth issue’ has to be personal care: once again I will attempt to nudge Maureen into taking a shower and changing her clothes this morning.  If words don’t do the trick I will pluck up the courage to spill a glass of water down her.  What else would be expected of a nasty, horrible man in the circumstances?  I’m not sure if the locals will continue to bless her if she continues to walk the streets in PJ’s that remain inside out and have become rather shabby after being worn for two weeks!

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Dementia: In The Dog House!

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Maureen let me have it in no uncertain manner last night.  She was concerned that the house stunk, was a mess and men had unlimited access to her sleeping quarters.  It was one of those occasions when I left her to rant and made my way upstairs to bed.  A few hours later she woke crying out for help as her mouth felt so dry.

Helping someone to resolve a dry mouth is relatively easy.  The normal remedies of a drink and a lozenge soon eased things.  However, this episode is a warning for me to support Maureen with oral hygiene as she often forgets to clean her teeth.  I’m also tempted to spill cold water down her this morning to see if this will encourage her to have a shower, wash her hair and change her clothing.  Girl Saturday did her best to spruce Maureen up yesterday but heard that ‘she was waiting for the weekend when we would be visiting her mum’.

I’m struggling to comprehend Maureen’s reality this morning as one of her opening questions was about ‘when I thought the war would end’.  She then sat for ages trying to remember her parent’s birthdays before barricading herself in the bedroom because she thought I had a dog in the house!

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Dementia: Post Respite Syndrome

I beginning to wonder if  ‘Post Respite Syndrome’ is inevitable as things never seem to go well after Maureen has been in a Care Home.  In fact, little has gone in our favour since she has been back home.  It took almost a week before the toxic impact of constipation moved out of our household. Then we haven’t seen any of our regular carers during the lately: no wonder personal care and changing clothes has gone out of the window.  The only exception being that Maureen’s is now wearing her  PJ’s inside out!

Maureen has been sleeping a lot since her return home.  My sleep has been chaotic, to put it mildly.  We have rarely ventured out together, so our trips to the local shops for cognitive stimulation in the community have been minimal. visits from family members in the last week have not gone well.   It took quite some time before hostilities came to an end when one of Maureen’s sons visited last Sunday.  A long awaited visit of her favourite granddaughter on Thursday was tinged with sadness as Maureen seemed extremely unsettled and wandered around like a lost sheep for a lot of the time.

Visits from family members in the last week have not gone well.   It took quite some time before hostilities came to an end when one of Maureen’s sons visited last Sunday.  A long awaited visit of her favourite granddaughter on Thursday was tinged with sadness as Maureen seemed extremely unsettled and wandered around like a lost sheep for a lot of the time.

I’m hoping that Girl Saturday will be able to work her magic this morning with Maureen spruced up and my dinner on the table when I return from basking in the warmth of the Spa at the Leisure Centre.  Perhaps, the equivalent of a delivery of ready-mix concrete, just as our builders had yesterday, would provide us with the foundations to move us on from ‘Post Respite Syndrome’ in the following week:

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Dementia: Care Homes -The Futility Of Inspection

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The following article is reprinted with the kind permission of Roy Lilley:

‘Once again the utter pointlessness of the CQC is exposed.  Once again the futility of inspectionproved right.
Once again Andrea Sutcliffe, the care-home inspector, is doing the rounds of the media outlets, cheerily telling us how terrible everything is…
One in three nursing homes in England are ‘failing’.
You have a one in three chance of leaving yer-granny or precious mum, in the hands of people who will not give her enough to drink, not help her to toilet in a civilised way, not ensure she takes her medications on time… don’t feed her, talk to her or treat her with even the kindness of a stranger.
A one in three chance of warehousing her when you thought you were helping her to live out her days in a home from home.
Fundamental, basic nursing and care… absent for nearly a quarter of a million people who live in nursing homes.  Get that… nursing homes; not care homes.  Nursing homes!
Care homes?  A quarter of them, and home-helps, rated as not safe enough.  Safe enough.  Get that… safe enough.  Never mind ‘good enough’.
The best Andrea Sutcliffe can manage?  Some potty idea of a ‘Mum test‘.
When choosing a care home, she tells us, be sure ‘it is a place that is good enough for your Mum‘.
How are you supposed to know?  What is the test?  How can you measure?  Homes will be at their smarmy best to entice a lucrative, new self-pay client.  Its a lottery with a three sided dice.
The smell of urine?
‘Oh yes Mr Lilley; I’m afraid one of our residents has just had an accident and we are in the middle of clearing up….’
The CQC are bystanders.  Expensive bystanders.  Spectators with VIP tickets, watching as the care system implodes.
I listened, this morning, to Andrea Sutcliffe on the BBC Today Programme.  The producers might not have bothered her to get out of bed early and traipse to the studio.  They could have played the archive version of her interview last year.
Andrea Sutcliffe is trapped in an Olafur Eliasson world of perpetual climbing and descending.
An Escher obsession where night is day and day is night.
A world where services are good but they are bad, where they are safe but not, clean but dirty, well run and abandoned.
It is no longer good enough to say most care homes are good.  The incidence of bad homes is now so high that it undermines any idea that the good homes are really any better… the inspectors just happened to turn up on the right day.
Andrea Sutcliffe is not responsible for care that’s not good enough for your dog.  The care home operators are.
Andrea Sutcliffe is not responsible for the fact that since 2010 public funding has crippled the sector.
Andrea Sutcliffe is not responsible for the fact that one care home a week is closing
…but she is responsible for the fact too many stay open providing unacceptable care.  If these hell-hole places really are not safe… close them.
It is the politicians and the care home operators job to make them safe, not Andrea Sutcliffe’s job to wrap one in three in a narrative that the other two are OK. 
Two things…
Do not put your relative in a care home unless you buy a bedside digital alarm clock with a remote control, hidden CCTV camera with a 4GB memory card.  They cost thirteen quid.
Better still find one that sends realtime images to your smart phone.
In unsafe homes embed CQC management to work in the home until it is safe.  Give them statutory powers to run, manage and train the home until they knew what good looked like and delivered it.
Who pays?  The care-home.
Two special measures that work…
Have a good weekend’.
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