Tag Archives: Distress

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!

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…
First;
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.
Second;
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’.

Dementia: Is There A Pill For It?

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Personal care has become a significant issue for Maureen in the last few weeks. She has been wearing the same pair of pyjamas since I collected her from Alderlea Care Home ten days ago.  She has also refused to shower or wash her hair.  It would be interesting to know if the pharmaceutical industry has a name for this aspect of her presentation and a pill for it.

Maureen has mixed dementia, predominantly vascular, and there is no medication for her condition.  That doesn’t mean that she hasn’t been offered pills.  A couple of years ago antidepressants were offered and declined.  More recently ’emotional incontinence’ was flagged up as a possibility when her Care Coordinator heard her in floods of tears.  Thankfully, treatment in the form of pills, although available was never offered.

I think it would be unfortunate if Maureen remained in her PJ’s this morning as she would want to look her best when her favourite granddaughter arrives in a few hours. With no pills at my disposal and Maureen’s Hairdresser (as she calls Girl Tuesday) on holiday, it’s down to your truly to sort this one out.

My early morning plan has gone out the window as I failed to entice Maureen into the marital bed: a shower can sometimes follow if the going is good.  Plan B which involved spilling a glass of cold water over her would not be helpful as she has been crying because she has ‘nothing to wear and people are laughing at her’.  She thinks ‘going home to her mum’ would solve everything: I can understand her thinking which is more than I can say about those who believe popping pills is always the solution!

 

Dementia: From Dreams To Reality

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Maureen woke me rather early this morning concerned that she had a plane to catch.  She was trying to find the lady who was travelling with her.  As I was half awake at the time I didn’t pursue the issue but assumed they were going on holiday together.  It took her a while to accept that she must have been dreaming before she drifted back into sleeping on the sofa.

I couldn’t sleep after my early awakening and tidied up a few things before going back to bed.  My dream didn’t wake me up but I have a recollection of being back on the shop floor of the car industry and struggling to find the machine I was working on.  Being lost in all sorts of situations often features in my dreams for some strange reason.

The reality this morning is that builders will be her shortly to continue digging out for the foundations of our Day Room.  Maureen doesn’t seem particularly unsettled by their presence possibly because they have made it safe for us to access the lawned area of our back garden.  She appeared to have a good time with our carer yesterday afternoon,  from the laughter that rang out from our dining room.  It will be interesting to see how things go this morning with a Temporary Girl Wednesday who is with us for the remainder of the week: a much younger model renowned for her vivid clothing.

I hope Maureen is awake before I go out this morning following an unfortunate incident two days ago when Girl Sunday had a difficult time dealing with hostile challenges to her presence.  It was rather fortunate that Maureen’s son arrived shortly after she awoke and took over the baton and was told in no uncertain terms what his mother thought of him.  Thankfully, Maureen calmed down before his departure and as he left he said ‘two different mothers today’.

Those early moments when you first wake up always difficult: when you have dementia and have been dreaming it must be a nightmare to try to establish your reality.  As  I drafted this post, Maureen was swirling a tea towel around her body and enquiring if she had to go to school today!

Dementia: ‘Where’s My Mum?’

Image result for Where's My Mom PictureOne of my favourite ways to start the day is listening to the dawn chorus.  As I lay relaxing to the early morning calls this morning another sound caught my ear: ‘where’s my mum?’  This was nothing unusual and is a familiar cry from Maureen first thing in the morning.

I’m always ‘winging it’ when I talk to Maureen about her mum as she had died years before we met.  Thankfully, I have heard plenty about her from Maureen and her relations.  My reassurances that she was in Nottingham were greeted with ‘why has she left me here?’  Then the going got really tough as I risked trying to fill in the gaps in Maureen’s memory; probably overlooking that she was time-travelling back to her childhood.

One of my usual suggestions, when Maureen is missing her blood relatives is a trip to Nottingham.  Her response this morning was ‘why don’t they come to see me?’  Fortunately, one of her sons came at the weekend and my reminder provided some comfort. Then the offer of a cup of tea was well received but it went cold as she tried to sort out her thoughts and drifted back to sleep.

Distracting and redirecting Maureen’s thoughts will become a little easier when she looks out of the kitchen window at a JCB and a Dumper Truck, on what was our patio. This may remind her of the impending Day Room.  She was rather concerned yesterday about being able to play in the garden whilst building was taking place.  However, she suggested she might be allowed to play in the mysterious Jamie’s garden for the next few weeks.

Thankfully, a short while ago I found a way of changing Maureen reality by whistling ‘You Are My Sunshine’.  Once I got into full throttle she stirred from her slumbers, gave me a big hug and told me what a good dad I was!

 

Dementia: ‘You Are My Hero’

Maureen spent most of yesterday on the attack, today she is full of gratitude.  My status yesterday was Zeo today it’s Hero.  Thankfully, I knew that constipation was the real villain: creating dramatic changes in Maureen’s presentation.

Unfortunately, we are not out of the wars yet but there is room for optimism this morning with movement a distinct possibility.  It was late in the evening before Maureen accepted the intervention she needed from Rapid Response Nurses after declining help that was offered from District Nurses earlier in the day.

What a difference a week can make.  Seven days ago I was enjoying a meal with two Professors during my Pilgrimage To Paddington.  A week later I was sitting outside the bathroom supporting my wife as she sought the movement she so sorely needed.

Professor Tom Schuller always encourages his former student to share his learning on this journey:

  • UTI’s create confusion: constipation causes havoc.
  •  The prospect of constipation needs to be addressed before Maureen goes into a Care Home again.

Dementia: DNA And Aggression

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Early this morning I have relied heavily on the advice of our local Pharmacist.  She told me shortly after Maureen’s diagnosis of dementia: Do Not Absorb any insults when she is in a combative mode.  She certainly ‘had one on her’ at 1.30 this morning. I have never had such vitriol directed at me and suspect constipation was the cause of her aggression:
‘If they depend on other people for their care or if they cannot easily find or access the toilet, this can also affect their bowel habits. Constipation in people with dementia can lead to a worsening of their confusion, as well as symptoms of irritability or aggression.
Yesterday afternoon Maureen told me that she ‘couldn’t poo poo’.  District Nurses responded promptly to my request for help.  Her reaction to their presence was tinged with sarcasm and suspicion.  It took quite some time before she gave them permission to feel her tummy.  They decided that any further examination would only cause distress and advised me to continue giving her laxatives.
Maureen woke at 5 am this morning, thinking I was her dad and wanting to know if she was late for an appointment.  Her confusion was paramount and she was adamant that she didn’t need laxatives.  In fact, she suggested that I should take them if I was constipated.
The advice from G P Out of Hours this morning was to contact the District Nursing Team as soon as they open.  Hopefully, Maureen will be a little more cooperative than yesterday and they will be able to get to the bottom of this problem!
This is the third time that Maureen has returned from a Care home with constipation.  It is something that needs to be addressed when I take my next break and an ensuite room would be a step in the right direction.
As I am about to post I hear Maureen in tears at the bottom of the stairs.  She tells me that ‘they have gone without me’ and goes on to say that ‘no one likes me’.   My reassurance that I like her has no impact ‘as I am not at school’.  Her feelings about being poor compared the rest of her fellow pupils keep resurfacing: she paid a heavy price for that scholarship to Nottingham High School!

Dementia: ‘I’m So Frightened’

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When Maureen lay on the sofa yesterday evening following an afternoon in the sun she said to me: ‘I feel so frightened’.  She went on to tell me how difficult it was to do simple things and how her confidence had been shattered.  I tried to reassure that I would always try to help her just as she had done for me during difficult times in my life.

I didn’t like to tell Maureen that I had been struggling to understand her presentation for most of the day.  It was late afternoon before I grasped what was behind the changes in her reality when she said ‘I didn’t know where I was until I saw all that loosestrife; then I knew I was in my garden’:

Then she revealed what had really spooked her yesterday.  A new carer had turned up and grilled her with questions during the morning.  Maureen thought this was a Memory Test in the preparation for readmitting her into a Care Home.  This may have sparked a challenging evening and a dreadful night.  Thank goodness I have decided to take her with me to London on Friday rather than recreating her worst nightmare: locked up in a strange place!

It was after 3 ‘o’clock this morning before Maureen was able to lay down on the couch.  I had listened to her monologue via the Baby Monitor between brief naps as I lay on the bed in the spare room.  Fortunately, it is a good day for grounding Maureen after a period of abject confusion.  It is likely that the presence of Girl Tuesday along with my sister and her husband will be just what the doctor ordered: with her jailer becoming her husband once again.

The odds of being able to persuade Maureen to get into the chauffeur’s car on Friday have lengthened. If this hot spell continues I think the odds will go out even further.  At 5 am I am still The Enemy with abuse being hurled in my direction whenever the opportunity arises.  My inclination at the moment is to keep my money where my mouth is rather than bringing about Maureen’s worst nightmare!

At 5 am I am still ‘The Enemy’ with abuse being hurled in my direction whenever the opportunity arises.  However,  with regard, to the trip to Lond, n my inclination is to keep my money where my mouth is rather than bringing about Maureen’s worst nightmare.  Just as I am about to post this Blog Maureen has asked me if she can share my bed as she is so frightened!

 

Dementia: Saved By Talk Talk

I’ve had to pull out all the stops today to distract and redirect Maureen from her distress following the visit by our Key Worker yesterday.  Then disaster struck when our phone line went down in the morning so no music via YouTube.  I have to hand it to Talk Talk they fixed the problem very quickly and Maeve was back on the screen and her Nana was singing along and clapping after every number:

What would really put the icing on the cake now is a phone call confirming that Maeve and her dad will be visiting us in Cleethorpes very soon!

I know I’m tempting fate by posting at this time as there is still possibly a long night ahead.  However, as Carers Week is drawing to a close I want to post about the importance of ‘Listening To Carers’ tomorrow.

 

Dementia: Pain Without Any Gain!

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We are both in considerable pain this morning: Maureen is in mental anguish and I’m in physical discomfort.

Our troubles began early yesterday evening when Maureen woke from a nap completely disoriented.  Her first concern was that someone had moved our toilet facilities and there was nowhere to relieve herself.  This then moved onto distress about a missing boy and the trouble she would be in for not looking after him.  Searches around the local area were not fruitful and heightened her concerns.  My distraction strategies hardly made any difference and she was far from settled as I went to bed at 10’o’ clock.

At two ‘o’ clock this morning Maureen disclosed that she was concerned about yesterday’s visit by our Key Worker and a colleague.  They were progressing a DoLS Application.  Maureen is trying to work out what was behind his searching questions? Such thoughts must be so disturbing to someone who feels professional staff have the capacity to lock her up and throw away the key.  I think she may have grasped that arrangements to deprive her of her liberty are about to be formalised.

I will be seeking a meeting with our Key Worker to look at how we address the distress that has followed his visit.   I will also be requesting an urgent appointment with my G P to seek some resolution to the pain in the right shoulder.  There are some immediate measures I can take to deal with my pain: Maureen’s discomfort is not as easy to address!