Category Archives: Mixed Dementia

Dementia: ‘Put On Your Seat Belts You’re In For A Bumpy Ride’

Mixed Dementia,

Today’s teaching is from Gen Togden the Resident Teacher at Madhyamaka Buddhist Centre:

His teachings are amazing and have inspired me at a very challenging time in my life.

My good friend Kelsang Dorde has had a similar impact on my well being.

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Anyone who opens a meditation session with: ‘put on your seat belts you’re in for a bumpy ride’ has clearly understood life when a loved one has dementia.

My time here is drawing to a close.  I couldn’t have been at a better place to calm my mind at one of the most challenging times in my life.

I am also grateful to so many people who have supported me during my struggles as I have reluctantly accepted that I can no longer provide the level of care that my dear wife deserves. In particular, Leah Bisiani who has provided exceptional support as I have walked down this tortuous path::

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I’m sure my mum would want to say ‘thanks, duck for supporting that lad of mine’.

 

Dementia: Finding The CQC Something Useful To Do

Mixed Dementia, Uncategorized

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The following article is posted with the kind permission of Roy Lilley, editor of nhsManagers.net:

‘Write about the CQC (them again) and I have to

prepare.  I need to reinforce my inbox.  I have never known an organisation to incite so much ire.
The inspected, the inspectors and the expectant all take to their keyboards.  Tales of woe, tales of the expected and unexpected.
For the moment, I’m going to park the ‘futility of inspection’.  We all know it doesn’t work.  You either get it or you don’t.
If the CQC are to warrant a place at the table and their huge budget, they have to do something useful.  They are not useful… and it may be be there fault.
Earlier this week I referred to the Competition and Markets Authority and their report on care-homes.  Pretty grim reading.
Finding a care home for yer-granny, untangling entitlements and getting a feel for what is a good home and what isn’t, is, as the report says ‘overwhelming’.  A situation made worse by contracts that vary from home to home.
Once in a home; it’s difficult to change a poor choice and there’s always the fear that complaining with result in subtle reprisals.
Rip-off pricing means the private sector is subsiding the skint, public sector.  Sometime paying double for identical care.
Service users and their families find themselves in the Bermuda Triangle of Local Authorities as the commissioners and purchasers, consumer law (clunky and dense) and the aloof CQC. 
Looking more widely at the landscape; funding is down by 8%, costs are up.  The CMA report tells us 75% of care home residents are LA funded and on average they are paying 10% less than their actual costs; a total deficit of £300m.
The consequence; care homes will reduce the number of LA clients they will take-on and the NHS will have to build bigger A&Es.
Is it any wonder the Times is reporting the care home giant, Four Seasons, is on the brink of collapse.  I wonder if the DH has a Plan B?
Is there a way out of this mess?  Yes; give the CQC  more powers.  I bet you’d never expected me to say that!
Their quest to ‘inspect’ quality into care homes is futile.  Turning them into a proper regulator makes much more sense.
The CQC should have total powers over the sector.  Clear accountability and someone to nail if it goes wrong.
I can think of a dozen new powers:
  1. Develop and publish an annual, independent, strategic assessment of the sector, with recommendations for government on the realistic cost of care and funding levels.
  2. Provide national model-contracts for care home providers, so the public know what to expect and where they stand.
  3. New powers to decline any home registration that does not have a CQC recommended safe staffing and skill-mix.
  4. End the difference between care homes and nursing homes.
  5. Develop accredited training for the care-home sector workforce.
  6. Publish clearer ‘Which’ style reports on care homes, making it easier for families to chose through an improved, user friendly website and help line.
  7. Publish ‘advisories’ on the viability of care home operators and prepare contingency plans for failure.
  8. Create a centre of excellence making it easy to find and share best practice.
  9. Provide an easy to navigate complaints and dispute resolution service.
  10. Create an identifiable, accessible local presence, that includes elected members, to improve public confidence in the CQC and democratic accountability.
  11. New powers to prevent differential charging between the LA and private sector clients.
  12. Powers to require care-home providers to post a performance bond to guard against the cost of failure.
Focussing these functions, in one place, makes one organisation accountable for the care home market, its conduct and it gives the CQC something useful to do…’

 

 

 

 

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:

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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: Three Sleeps To Go!

Mixed Dementia, ,

 

Image result for Three Sleeps to Go PictureI’m counting the nights of sleep until Wednesday; rather than looking forward to the arrival of Santa.  Following little sleep, in the last few days, Maureen will be going to Alderlea Care Home on Wednesday morning, for a slightly earlier than scheduled Respite Break.  If I’m sensible I will be able to hold the fort until then after a very difficult few days and nights.

Yesterday evening, things became very challenging shortly after ‘Strictly Come Dancing’ when Maureen became convinced that a baby was in danger of hypothermia.  It took me a long time to convince her that the poor little mite was safely wrapped in a blanket.

During the night she woke several times; initially convinced we were about to go into battle.  Then she was searching for a missing teenage grandchild.  Later on, she was shouting for her mum because she thought she had swallowed a marble.  She then returned to the missing baby theme as I was making her an early morning cuppa.

I always try to go with Maureen’s reality and resist arguing with her concerns.  However, on a couple of occasions, I have found it difficult to provide the reassurance that she is obviously seeking.  When I told her that her granddaughter was probably tucked safely up in bed in Coventry she called me a liar.  Obviously, I got that one wrong but when you are woken in the middle of the night it’s not easy.

Today’s carer will be here at noon and I’ll be heading off to the Sauna and Spa at Cleethorpes Leisure Centre!

Dementia: Tired Of Waiting

Mixed Dementia,

The Kinks sum up my feelings this week:

On some days I can do nothing other than wait for Maureen’s reality to change.  Last night was a prime example.  When she woke after dozing on the sofa; concerned that she needed a clean pair of nickers she accused me of stealing her underwear.  When I showed her where she kept her knickers she said she didn’t want them at that moment.  Then she got into bed and told me I wasn’t allowed in the same room as her.  Four hours later I’m dealing with an entirely different reality.

Maureen called out Paul and woke me from sweet dreams at 4 ‘o’clock this morning.  She then joined me in the spare bedroom saying it was cold and we wouldn’t come here again.  Within a few minutes, she was fast asleep beside me in bed leaving me to ponder over what had been going on.  A short while later she shouted me as I boiled the kettle for the first cuppa of the day, asking me where her mum had gone.

There is a simple explanation for all of the above IMHO: Maureen is time travelling. She is going back to the time when she lived with her parents.  She slept in the same bed as her mum.  Her dad wasn’t allowed in the same room as his wife because she was afraid she would be harmed if he had an epileptic fit in the night.

I’m never concerned when Maureen thinks I’m her dad.  He sounds a wonderful man.  Unfortunately, he had passed before we met but I know I would have got on with ‘Union Jack’, as he was fondly known as a house on fire.  We were both Union Men:

As I type Maureen has joined me in the office worrying that her mum is cold.  I have encouraged her to move into the marital bedroom and found an additional blanket for her mum.  She is shouting me now: ‘dad where have you gone?’

NB:  Both of Maureen’s parents passed a few years before we met.  She has just encouraged me to join them in bed.  Perhaps, something she always wanted to see – her mum and dad together in the same bed.

Dementia: Open All Hours

Mixed Dementia, ,

 

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I sought help at 4 am this morning after a dreadful night.  Firstly, I spoke to Single Point of Access to ask them to pass on a message to our Key Worker that things were getting out of hand.  Then I contacted a Mental Health Nurse in the Konar Suite about Maureen’s presentation.  She gave me excellent advice and suggested coping strategies based on her experience of Maureen when she was in their care.

It is possible that my attempts to provide additional stimulation for Maureen in the evening have upset the apple cart.  It was lovely to see her singing and dancing to Nat King Cole yesterday but a quieter evening might have led to a more peaceful night.

It is so helpful to have support available 24/7 when the going gets tough!

Dementia: Dealing With Side Effects

Mixed Dementia

 

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One message that is coming through loud and clear from  NAViGO at the moment is the risk of side effects from medication.  This was evident in the entire time that Maureen was in the Konar Suite.  It was stressed again on Monday when  Maureen’s Care Coordinator said ‘it’s much better if she can get away without taking any more tablets’.

One side effect of dementia that I’m struggling with at the moment is Maureen not knowing how to fill her time.  This is particularly problematic on these dark and cold evenings.  Addressing this as ‘sundowning’ is unhelpful – Maureen simply can’t remember how to fill her time!  To help her on this front I have decided to come out of retirement and start organising evening activities again.  This is how Maureen and I first met: we worked together facilitating adult learning opportunities in Coventry

I’m spoiled for choice in my programme that begins tonight.  Maureen has such a wide spectrum of interests that it shouldn’t be too difficult to persuade her to join me in a learning adventure.  She has always been a good linguist so French will be on offer this evening.  There are all sorts of informal ways I will try to hook her into what should be a fun evening.  I have also set up the Sun Room as an Art Studio in case she gets bored with ‘parlez vous Francais?’

Update: At 9.30 Maureen is singing and dancing to the Sound of Music in our Sun Room.  Her joy is infectious and it is so wonderful to see her in such good spirits.  I’m really back in the working groove now as we organised classed for adults during the day: even integrating them into classes alongside school pupils!

Dementia: More Than Words

Mixed Dementia, ,

Maureen caught me at it early this morning – whistling this number in the kitchen:

When she found me clearing up the debris from last night’s meal she was holding two blankets.  She had spent the night on the safety of the sofa: a place where men would find it difficult to get at her.  As soon as she saw me she gave me a beautiful smile so I  hugged her and burst into the above song.

I then told her I was going to remind her of the first cassette tape she had ever bought for me:

As soon as the opening lines appeared on out TV screen Maureen said: ‘I remember that one’.  Music continues to be such an important part of our life and Girl Monday/Tuesday and Friday often resorts to YouTube.  When I return from my time off  I hear them at it, with singing and laughter ringing out as soon as I open our front door.

The first meeting with Maureen’s Care Coordinator went really well yesterday.  When I mentioned the need for clarification over Maureen’s diagnosis she agreed that it was a matter that needed clarifying – ‘there was nothing to lose’ by revisiting this issue.  It has always concerned me that Alzheimer’s was diagnosed in the early days but that has now been revised to vascular dementia.

The really good news from yesterday was there is now a Crisis Contingency Plan in place with numbers to ring whenever the going gets tough: far more than words! 

 

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.