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.

Dementia: ‘Bless Her’

Mixed Dementia,

Image result for Bless Her Picture

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!

Dementia: In The Dog House!

Mixed Dementia,

Image result for in the dog house pictures

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: Post Respite Syndrome

Mixed Dementia, ,

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:

Dementia: Care Homes -The Futility Of Inspection

Mixed Dementia,

Image result for Failing Care Homes Picture

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?

Mixed Dementia,

Image result for Is There A Pill For Dementia Picture

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

Mixed Dementia,

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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?’

Mixed Dementia, ,

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: Digger Or Dumper?

Mixed Dementia, Uncategorized

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Andy our builder is due to start work on our Day Room this morning.  The extension will run right across the back of the house alongside the current one in the dining room.  It will include an additional a shower room.

I’m going to be spoiled for choice when I need to distract Maureen this morning.  Should she drive the Digger or the Dumper?  It will be interesting to see how things go with workmen around for a couple of months.  However, the prospect of being able to sit all year round and look out on our back garden will hopefully make it all worthwhile:

There are two aspects to Maureen’s reality this morning.  Her early concerns were that ‘I should get out of bed before her mother found us together’ but she reassured me that ‘there would be other opportunities to sleep together’.  A little later she came rushing downstairs worried that I’d gone without her.  I hesitate to speculate what she will think when our builders arrive shortly!

Dementia: Bananas In Pyjamas

Mixed Dementia

 

Image result for bananas in pyjamas

I have made a decision to show solidarity with Maureen this morning: if you can’t beat them join them.  When we go to buy some bananas shortly I’m also going to be clad in PJ Pants.  She has had hers on since Monday and my attempts to encourage to change into more suitable attire have failed.  However, she has followed my advice on another front by taking laxative drinks and things have moved.  It is a relief that the aggression has been flushed away but unfortunately the confusion remains with constant changes in her reality.

One of my daily struggles is working out who Maureen thinks I am at any particular moment in time.  Earlier on, when she gave me the ‘good news’ I was pretty sure that she thought I was her husband.  Less than half an hour later she was calling me grandad and asking me questions about working in a coal mine as if I was her mother’s father.

Maureen is keen to get back home this morning to see her mum and dad: she really misses her birth family and longs to be in the company of her brother and sister.   She has already forgotten my reminder that one of her sons will be here in a few hours.   It will be interesting to see what impact popping down the road to the Spa Stores has on her reality and what the shop assistants think of our attire!