Tag Archives: Respite

Dementia: Facing Reality

Mixed Dementia, ,

Image result for Facing Reality Picture

I felt tired and completely overwhelmed by our situation yesterday.  Throughout the day I struggled to cope with my environment.  Maureen’s presentation fluctuated at such a rate that at one stage I doubted who I was and where I lived.  Our builders, along with two joiners, were making such a racket that any thoughts of a siesta were out of the question.  The shell of our Day Room was being used as a dumping ground and resembled a bomb site.  Towards the end of the day, I began to wonder whether I had got carried away with the ideas about a Day Room and was failing to face the reality of life as a Care Partner.

Maureen woke very early this morning and I tried a bit of Barney to cajole her into the marital bed:

This was a person-centred approach as Maureen loves a lot of Barney and will always join in with the chorus.  Once again she was ‘having none of it’ as they say and went on to berate me for ‘never being at home or often in the bed of others’.  It didn’t take me long to understand that she was confusing my behaviour with ‘her previous’.  However, shifting tack again did the trick and led to a really positive outcome.

I decided to give Maureen space before turning on Mr Nice Guy by telling her about my faltering attempts to return to drawing.  After describing my struggles with the pencil yesterday I told her that I wanted to attempt to sketch her while she was sleeping.  She then asked me what I wanted to do today and I suggested going for a walk on the beach and collecting shells.  We made this a date and collection will begin later – weather permitting.  If our mission is successful we plan to paint the shells and add to the collection that we already have from the efforts of our grandchildren.

The reality of this morning is that Maureen may well forget about our planned walk on the beach.  What I have to face is that I can’t go on like this: no-one could or should be expected to.  The demands being placed on me are unsustainable.  This became obvious when I met our Key Worker last week.  He was uncomfortable with my plans to engage a carer for a 48-hour stint so I could have a break.   Any reader of this blog will be aware of the exhausting sagas that have followed previous ‘Respite Breaks’.

I have not been able to sleep, and have been ruminating over our situation, since my early morning awakening.   A ‘Respite Break’ is far from the solution, in fact, we have been worse off after a period of separation.

The ‘shell seekers’ have to come up with their own solutions to the challenges we now face.  Some of my initial thinking has been along the following lines:

  • Using carer sits to reduce my involvement in domestic tasks and cooking.
  • Exploring the possibilities of short breaks together.
  • Exploring new activities together and with others.
  • Seeking advice on how to make our home more dementia friendly.
  • Reviewing the outline plans for our Sun Room.

There is no doubt that the level of support we receive in our neck of the woods is exceptional.  The attempts to support carers and their partners in a person-centred way are genuine.  However, the reality is that I’m tired and ‘Respite Breaks’ have not worked: so we have to try something different!

Footnote:  Just as I am about to post Maureen is campaigning to be taken home.  She doesn’t want to stay in here any longer as she is now fully recovered.  I doubt we will make the beach this morning but the aspirations of the ‘shell seekers’ remain viable!

 

Dementia: Having It Off

Mixed Dementia,

Image result for Having It Off Picture

After a very disturbed night, at silly ‘o’clock, I have decided to have a day off.

Girl Sunday will cook today’s lunch and it’s ready made pizza for tea.

All social media is being switched off for the next 24 hours.

I’m about to try to get some more sleep.

Have a good day.

Dementia: Seeking Firmer Ground

Mixed Dementia,

It has taken our builders a couple of weeks to prepare the ground for our Day Room.  The footings have now been dug, the concrete poured, and bricklaying will begin in earnest today.  As I have watched their painstaking work I have been involved in a similar process of attempting to seek firmer ground for the weeks ahead.

Following a sound performance by a new carer at the weekend I’m in an optimistic frame of mind this morning.   She played it well; never invading Maureen’s space and providing support when it was needed.  Her Sunday Dinner was so good that Maureen didn’t even know there was a new chef on duty.   So despite a change of personnel my aspirations to be relieved of time in the kitchen at the weekend can still be fulfilled.  The inside information I have on a carer who will be making her first appearance here today is also good, so that is a relief.

A month has almost passed since my Pilgrimage to Paddington and it is time for another break from my caring duties.  I’m hoping that Maureen will be able to stay at home this time and avoid the fall out from being in a Care Home.  Our Night Sitter is in the process of confirming her availability to ‘live in’ during my absence which has been agreed as ‘in Maureen’s Best Interest’.

Our Day Room will really begin to take shape this week if we are blessed with fine weather.  Patience on my behalf and a little bit of luck might just help us on our journey!

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: 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: ‘You Are My Hero’

Mixed Dementia, ,

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

Mixed Dementia, , 
Image result for Constipation and Dementia Picture
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: Compassionate Carers

Mixed Dementia, ,

Image result for compassionate Carers picture

I am frequently overwhelmed by the dedication and compassion of Maureen’s carers. When I called into Alderlea Care Home yesterday several members of staff asked me how she was doing.  People I had never met before were genuinely interested in her welfare.  It was reassuring to hear from the Activities Organiser that Maureen had joined in with her programme; entertaining others with her flamboyant dancing.  I think it is likely that they may see further performances from my Dancing Queen the next time I need a break!

We had a pleasant surprise in the afternoon when one of our weekend carers popped in to say hello.  She had kindly offered to cover the shifts of her co-worker who has moved onto other things.  This was great news as she has an excellent rapport with Maureen.  Unfortunately, I made a joke that misfired with Maureen thinking she had cheekily popped in for lunch!

Early this morning, following a toilet break I managed to steer Maureen upstairs for the first time since her return home.  It was good to be together in the marital bedroom once again.

I’ve been following my new morning routine today.  Cyber friends like Henri continue to provide invaluable support on this journey.  Maureen’s early morning focus is on ‘how did we get here and have we moved to a foreign country?’  My Tea Boy duties are currently on hold as our milk is sour.  This will give us a chance to get back into the old routine with a little bit of cognitive stimulation in our local Spa Shop.  My only dilemma is whether to try to cajole Maureen out of the P J’s she has been wearing for the last three days before she ventures outside!

Dementia: Reviewing Our Routines

Mixed Dementia,

I have always found it difficult to settle down after a holiday.  Sometimes I have really struggled to get back into my old routines after a short break in the sun.  My Respite Break has left me with a feeling of uncertainty about where to pick up the reins of being a Care Partner for Maureen.  Therefore, I have decided to draw on the work of two fellow bloggers to help me review my routines:

Henri’s post on ‘How to have a good day’ is giving me a creative start for my mornings.

Christy Turner (Dementia Sherpa) has posted a helpful approach to communication:

We both slept well again last night.  The new sleeping arrangements are clearly paying off.  However, Maureen woke in the night with familiar concerns about being left by herself and then said: ‘I wish someone would adopt me but I suppose I’m too old for that’.  When she woke a couple of hours later she said ‘will someone please help me’ as she couldn’t remember where the bathroom was.

Maureen’s Carers have also been encouraged to review their routines.  Our Key Worker has revised our Support Plans emphasising the importance of taking Maureen out for walks and engaging her in stimulating activities.

It will be interesting to see how Maureen reacts to the new routines.  I’m optimistic that her thoughts on adoption will fade as we all seek to engage her in positive pursuits!