Category Archives: Mixed Dementia

Dementia: Special Measures

Mixed Dementia, Uncategorized, , ,

 

Image result for Keep Calm We are in Special Measures Dementia Picture

On Thursday things went from bad to worse as the day progressed:

  •  Girl Thursday advised me it was her last shift as she needed to change her working hours.
  • The Alzheimer’s Society told me that I would no longer be able to access my Support Worker as we did not fit into their Pathway.
  • Maureen presentation became more challenging and it became difficult to persuade her to remain in the house.
  • Maureen was reluctant to cooperate with a Duty Worker from Focus Adult Social Care and told her to ‘get out of my house’.

The Duty Worker and I agreed that the option of a Respite Break where Maureen would be placed in a Care Home would not be in Maureen’s Best Interests.  We were both reluctant to chance going down a slippery path that could lead to Maureen becoming a permanent resident of a Care Home.  Fortunately, I managed to buy some time on our options by engaging a Night Sitter (Girl Tuesday Afternoon) who I booked from 9 pm until 7 am.

Sleep came easily to me once I hit the pillow shortly after the arrival of Girl Thursday Night.  Three hours later I awoke for a toilet break and checked on proceeding downstairs to find Maureen awake and in a combative mood.  However, feeling refreshed I managed to ease GTN out of the firing line to explore her availability for the next few days.

I now have a Holding Position for the next few days with some ‘Special Measures’ in place and some aspirations pending.  They reflect the decision of the Best Interest Meeting with Maureen staying at home along with some additional support:

  • GTN has been booked for Night Sits tonight and the following Monday, Wednesday and Friday.
  •  I will request an induction process for two new carers who will cover four shifts next week.
  • I will explore if it is possible for the support I have been receiving from the Alzheimer’s Society to continue while we are in Special Measures.

I hope that Girl Friday is able to work her magic this morning and become ‘Maureen’s hairdresser’ once again.  She has been on holiday for three weeks and I’m optimistic there will not be any hangover from her last when Maureen ordered her out of the house because she suspected we were having an affair!

 

Dementia: SOS

Mixed Dementia, ,

Image result for Sending Up Distress Flares Picture

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.

 

Dementia: Enough Is Enough

Mixed Dementia,

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:

 

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,

Image result for From Dreams To Reality Picture

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!