Tag Archives: Respite

Dementia: Magic Moments

Mixed Dementia,

The last few days have been sprinkled with Magic Moments:

My visit to Coventry got off to a lovely start.  Seeing mum smiling, singing and tapping her feet when I played her some of her favourite tunes on my phone brought tears of joy to my eyes.

There were different emotions at work when I caught up with my brother in the afternoon.  When I saw ‘our kid’ barely able to raise a smile I was glad I was able to hide my tears behind my tinted spectacles.  Thankfully, my eldest daughter’s girls helped me to end the evening with joy in my heart.

London is always a culture shock to anyone living in a small seaside resort like Cleethorpes.  However, with help from the locals, I made it meet my middle daughter at Kew Gardens.  We spent a lovely afternoon together.  My introduction to her partner couldn’t have gone better.  True to form I had dropped off in the pub when he arrived for our first meeting.  Once I stirred it was a pleasure to see how happy they were with each others company.

Even more magic moments came from extending my stay in Coventry.  On Sunday my brother was a different person smiling constantly as I sat beside him.  It may have been the Santa hat that was perched precariously on his head that changed his demeanour.  Perhaps it was hearing the rock and roll that I played him on my phone.  On the other hand, it may have been how carefully I fed him his Sunday Lunch.

Mum dropped off to sleep shortly after I called to see her on Sunday afternoon.  However, I will never forget the beautiful hug we had together.  She stroked my arm as we held each other tightly, something we have rarely done before as we are not a touchy-feely family.

When I called in to see Maureen at Aldelea Care Home yesterday she was laying on a sofa saying she wanted to go home.  When I told her that she could she thought she was dreaming.  Since we have been back home together there have been magic moments that would fill page after page…………

 

Dementia: What’s Good For The Cat!

Mixed Dementia, , ,

 

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It is always good when you have placed a loved one in a Care Home to hear that they have settled.  During my time at Madhyamaka, I phoned up Alderlea Care Home several times to hear such reassuring words.  However, once I got my first stint of dental treatment out of the way yesterday I decided to ‘pop’  to see my ‘settled wife’.

I telephoned before my early afternoon visit to check that my presence wouldn’t upset the apple cart.  I got the green light along with a request to bring in some additional clothing as she was currently clad in her dressing gown and Pj’s.  What they didn’t add was that her top was back to front and her pants inside out.  She also had socks on and one slipper that didn’t belong to her.

Maureen seemed very settled when I saw her singing Christmas Carols as she stood trying to adjust her attire.  She didn’t seem particularly interested that I had turned up as she sang along to one carol after another.  I eventually joined her on a sofa and held her hand for a while – she told me ‘we didn’t need permission’ for such behaviour.   I only stayed for an hour as I had to return for further dental treatment.

Maureen was far from settled when I returned to Alderlea around 8 pm.  She was very distressed that she would need to ‘sleep on the floor because there were no beds available at her hotel’.  She was very pleased to see me and introduced me to a couple who had been looking after her.  Maureen mistakenly believed they were deaf and dumb.  She continued to make hand signals to them for a while but eventually joined in with the gentleman when he burst into song.

Maureen told me that she was exhausted as she had been walking around all day.  However, when I eventually found her room she couldn’t get out of there fast enough.  At ten ‘o’ clock I was encouraged to go home so that staff could get on with their night time routines.

I have only had a glimpse of what it is like to be ‘settled’ in Alderlea Care Home.   My initial impression is that staff are constantly under pressure to meet the complex needs of their residents.  Last night a resident had fallen and staff had to focus on keeping her comfortable until the paramedic arrived.  They would have missed some of the things that I saw going on and they would have been unaware that Maureen received more than her fair share of vitriol from another resident whose ‘tiredness’ had apparently taken its toll on her presentation.

My Admiral Nurse told me some time ago that ‘she wouldn’t leave her cat with someone she didn’t know’.  Hearing your wife is settled can be reassuring when you are away from home – seeing what that means is another matter.  To use the local lingo you can guess where I will be ‘popping’ or even ‘nipping’ to in the next few days.  I have to check if they are ‘kitten’ me!

 

 

Dementia: Never Give Up

Mixed Dementia,

I have so many things to thank my cyber friend Kate Swaffer for. Making me aware of this video is something else I want to hug her for:

 

Maureen went into Alderlea Care Home for a Respite Break yesterday.

I’ll be leaving for the Madhyamaka Buddhist Centre in Pocklington shortly.

I need the company of kindred spirits to help me clarify my thinking.

I now accept that I cannot provide the 24/7 care that Maureen needs.

 

Dementia: Care Homes: ‘not good enough for mum!’

Mixed Dementia

This article is copied with the kind permission of Roy Lilley:

Image result for Roy Lilley Picture

 

Listen…
News and Comment from Roy Lilley
If you have a relative in a care-home this’ll interest you and if you don’t it should…
Which? the consumer magazine people, have been busy researching.  Results published last week, that didn’t hit the headlines.  Given the system-wide difficulties with care of the elderly, this news should have pushed Brexit, Trump and all the other malarkey, off the front pages.
Here’s a flavour:
“More than half of care-home places in some parts of England are in facilities rated as ‘inadequate’ or requiring improvement”
The report, based on the CQC’s own data, is a horrifying read.  In 45 local authority areas, a third or more, care places are in poor quality care-homes.
We are paying the CQC to be spectators, watching the car-crash that is care of the elderly.
Where is Andrea Sutcliffe’s “good enough for your mum” baloney?
If ever there was real-time evidence that inspection doesn’t improve quality, it is in this report.  Health Minister Philip Dunne, responsible for all this… asleep at the handles of the wheelchair.
The care sector is in crisis.  One of the biggest, Four Seasons, threatened me with their lawyers last time I mentioned them… they posted a £264m annual loss and £500m debts, are back in the headlines.
They’re responsible for 17,000 people.   The Guardian reports; 
“Four Seasons has [buckled] under the pressure of state funding cuts… shortage of EU nurses since Brexit… higher costs after the introduction of the national living wage and meeting repayments on a debt-pile of £525m.
The UK’s second-largest care-home provider… put forward its own survival-plan last month, ahead of a £26m debt repayment, due in December, that it would have been unable to honour.”
… bear in mind the CQC are responsible for regulating the industry as well as inspecting it.
Months ago I said the sector was surviving on a totally unfair subsidy from private payers.  It seems the Competition and Markets Authority have finally woken up.  Doing the CQC’s job for them.
On average, self-funders pay 40% more than local authority rates.  Private individuals paying a multi-million pound subsidy to keep the sector a float.
… time for a law preventing differential pricing.
The CMA also points to an inadequate complaints system, unclear T&Cs, family and friends banned from visiting.
It’s not just the CMA, we all need to wake up.  We simply can’t allow the CQC to swan along, responsible for the care quality of 350,000 people, knowing a third of them could be warehoused (what other word is there) in poor quality, possibly dangerous places.
We have to ask, is the CQC incompetent, overwhelmed, wilfully blind, inadequate, out of their depth?  It is dishonest to pretend they are on top of their task.
They’re responsible for this mess and we can’t challenge them or get rid of them.  They are not interested in our complaints.  They are unaccountable to the people who pay for them and the people they’re supposed to protect.
There is a democratic deficit.  Hand the money, the licensing job and supervision to local authorities.  Unlike the CQC, if they make a mess of it we can vote them out.
The data is clear.  Live in a care-home and you are more likely to be admitted, through A&E, for pneumonia, hip-fracture, sepsis, head injuries, volume depletion and dementia.
Time for an eye-watering focus on which of the 17,500 care-homes has high admission-rates.  At a national level the data’s a bit crude but easily finessed locally.
The demarkation between care-homes and nursing-homes is no longer valid.   As care-home residents get more frail they drift into nursing care and few care-homes can manage the transition.
All care-homes should have a full-time, prescribing, nurse-specialist on the staff, 24-7, or no registration… simple.  And, the local A&E should be able to veto registration. They’ll know better than anyone, what’s what.
The under utilisation of elective services, by care-home residents, probably tells another ugly story.  Not enough GP visits picking-up potential problems.
The DH, palavering about with a Green Paper, is an obvious long-grass tactic.  The price LAs pay, for care home placements, is being exchanged for the safety of the most vulnerable and the exploitation of self funders.
Austerity is being bought with the safety of the most frail and money ripped-off from families.
———————————–
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Dementia: Time For Tweaking and Sleeping

Mixed Dementia, ,

 

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We are now halfway through the cycle agreed at the Best Interest Meeting.  Two weeks today Maureen will go into Alderlea Care Home for a week.

Maureen’s Care Coordinator is due this morning and this will be an opportunity to discuss how things are going.  Tomorrow our Key Worker and I are meeting our Care Agencies to review progress.

Our carers; the girls’ as Maureen calls them have been remarkable in the skill and compassion they have shown in helping Maureen to settle at home.  They have worked tirelessly to involve her in domestic duties despite her claims that she is entitled to be a Lady of Leisure.  In her view, such things as general household duties including the preparation of food are my job ‘as I don’t do anything else for her’.

Although I will have a week off in a fortnight, the current arrangements are no longer adequate.  I have already clarified that one of our carers is available for an additional three-hour shift a week.  This will mean that I can have six hours to myself on alternate Tuesday’s and Wednesday’s.  Such an arrangement is a phone call away.

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Paul McKenna could help me to solve my sleep deficit.  When Maureen wakes distressed in the night I’m finding it increasingly difficult to get back to sleep.  I’m hoping I can find my ‘Sleep Like A Log’ CD as McKenna has helped me to count myself back to sleep at previous difficult moments in my life.

 

Dementia: A Must Read

Mixed Dementia, Uncategorized,

The following article is reproduced with the kind permission of the author Roy Lilley

Image result for Roy Lilley Picturethe Editor of nhsManagers.net:

‘Ten elderly people with dementia live, in a care home, supported, but as independently as possible.
To provide meaningful day-times, they take part in daily chores and contribute to light housework and preparing meals, under supervision.
Two residents have taken on the responsibility for opening and closing the curtains, night and morning.
One morning it all goes wrong; whilst opening the curtains a resident falls and breaks a hip.  This is reported as a serious untoward incident, the regulators are informed, as are the relatives.  The press get hold of it and the roof comes in.  The whole care model is under threat.
The resident’s participation in their care model comes to an end.
Had the incident been thoroughly investigated, it would have been discovered there was a leak from a radiator which meant the client slipped on a puddle of water.
The rules have now changed, the lives of the residents less interesting because everyone is risk averse.  Managers are thinking about their careers.  Now it’s all about the rules.
Let me ask you some questions…
  • Can you name five rules, in play, where you work?
  • What is the purpose of the rules?
  • What rules would you delete and change?
  • If you could invent three new rules, what would they be?
  • Do you think rules should be made in agreement with the client; if they want to take a risk they should be allowed to do it?
Think about the dignity of risk.  In our lives we compute the risks and decide; we cross the road before the little green man appears…
Now think about a lady with dementia.  She screams.  She screams and screams and screams.  The staff can’t stand it and the other residents complain.  So, they lock her in a room until she stops.
This is called negative behaviour.  A resident with limited communication resources reacts in the only way they can.  They either get violent, withdrawn, or scream.  She has to scream to make a point.
The question is; what point?
More questions:
  • Have you even demanded attention in a negative way?  What was the response?
  • Statement; ‘If a client cries out for attention, it says a lot about you’… discuss.
  • How do you find out the cause of negative attention?
  • What do you think of the statement; ‘if only she didn’t have become a client…’
These are not my questions.  I’ve pinched them from a book by Geert Betting,˜Moving on and Sending Still“.
Fundamentally a book about caring for difficult people in a care home setting, LD and dementia clients but it is so much more…
By accident the book explores the psyche of care and the people we care for.  It asks tough questions and made me think.  The signals we give to the outside world and how we misinterpret them… to our cost.

What group of patients do you work with?

  • What are the similarities among them?
  • Can you, clearly, describe the work you do, to friends and family.
  • Have a few people around you and ask them to write five key words about the work you do.  Ask everyone what they’ve written… what are the similarities?  What do you notice?
  • Do you sometimes say, ‘I don’t have time’… could you have made a different decision?
This is a very good book and read with an open mind can be applied to wherever you work in the care system, regardless of what you do.  Do that and it comes a great book.
Working under pressure, working with scarce resources, working and managing at the very edge…
…this is a clever book designed to make us reflect and is a must read’.

 

Dementia: I’m Not To Talk About It

Mixed Dementia,

Maureen has now been declared fit for discharge from the Konar Suite

The Multi-Disciplinary Team agreed yesterday that it was in her Best Interest to come home: subject to a robust Care Package being put in place.

I now have to learn to be patient: particularly as Maureen is settled on Konar.

Maureen has been singing this one to staff on Konar:

Such an appropriate song: our discussions yesterday are CONFIDENTIAL!

Dementia: No Medication Needed

Mixed Dementia, Uncategorized,

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Maureen’s period of assessment has now been completed.  Her Consultant has concluded that no medication is needed at the moment and her fluctuating presentation is to be expected.  The Best Interest meeting that is scheduled for next Friday will determine her future care and accommodation.

It would be pointless to harp on about the delays and duplication under the Mental Capacity Act that will delay Maureen’s departure from in the Konar Suite.  I made the point yesterday that this is another example of the law becoming an ass.

I could waste a lot of energy attempting to speed up Maureen’s homecoming but it would be exhausting.  Following advice from a number of quarters, I am going to use the next ten days or so as a Respite Break.  This will set the scene for how I intend to prevent Carer Breakdown in the future.

I have already made it clear to Social Services that I will be taking regular Respite Breaks.  From now on my shift pattern will be four weeks on, one week off.  With the proviso that two weeks off may be necessary on occasions.   I have already discussed the viability of these arrangements with Alderlea Care Home.  We have talked about how this might pan out, along with Maureen attending for Day Care on Monday’s.

Sincere thanks to two of my cyber friends: Leah Bisiani

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and Tracey Maxfield 

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for their patience in helping me to see that an exhausted Care Partner is on a very dangerous path indeed!

Dementia: Taking A Break

Mixed Dementia,

Image result for Taking A Break Picture

When you  are exhausted and your wife says to you:

‘I don’t know who I am.

I don’t know where I am

and I don’t know what is going on.’

It’s time to take a break to give yourself time to think.

This is why Maureen is now in Alderlea Care Home for the next week.

 

Dementia: No Pain No Gain

Mixed Dementia

Posted at 5.30 am – a further post is likely later.

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There is little doubt that living on a Building Site is continuing to distress Maureen.  She made that clear when I eventually got her home yesterday by asking me ‘when is that man was going to come back to clear up his mess’.  She also told me that she ‘was only staying here because no-one else wanted her’.  There is little I can do about either of these situations: workmen need to be here for another four weeks and her nearest and dearest are conspicuous by their absence even on Bank Holidays!

My judgment about avoiding Care Homes at the moment has been confirmed by two conversations I’ve had over the weekend.  On Saturday we were chatting to a mother of a carer who works at a local Care Home and she said her daughter had told her that none of her workmates would ever encourage a loved one to take up residence in such places.

Yesterday a kind lady, who was very supportive to Maureen, gave an insiders perspective on Ashgrove Care Home.  She told me that there had been an exodus of long serving staff who had been replaced by employees who were untrained and spoke little English.  This is the Care Home that lost Maureen on one occasion and was unaware that she had gone missing until the Police telephoned.  On another occasion, I went to visit Maureen and found her trapped in an unlit room in an unsupervised area of the Home.

There has been lots of pain from builders being on site for the last two months.  It is one of those occasions when there is no gain without pain. The addition of a Sun Room along with a Shower Room will provide all sorts of options for the future.  It can even become a place where family members can stay overnight to give Maureen the company that she so desperately craves.

I’ve just remembered I have forgotten to let you know how I managed to get Maureen back here.  After I trailed her in the car on the advice of the HTT she suddenly waved me down so I opened the car and she got in.  I drove towards Cleethorpes and as I was passing McDonald’s I mentioned I fancied a chocolate milk shake and she said she wanted an ice cream.  A Raspberry McFlurry did the trick with Maureen changing her reality and ‘we had a nice day’.  I mentioned Maureen’s transformation to the Manager and she was so pleased that they had been able to help that she popped out to the car to meet a very satisfied customer!