All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

Dementia: Going Dancing Again

Mixed Dementia,

 

Image result for Going Dancing Picture

Maureen and I strutted our stuff on the ‘dance floor’ at Alderlea Care Home yesterday.  How could I refuse a ladies invitation dance when my wife had said ‘can we do this one?’  I may be wrong but I think she even allowed me to lead as we moved around the floor.  Our dance was another indication of how settled Maureen has become at Alderlea.

I’m going to Coventry for more dancing this morning.  I need some further tuition from my mum.  She used to wait up for me on my return from Victor Sylvester’s all those years ago. Clad in her dressing gown she would help me to remember my steps.  Even if she is sleepy on my arrival at her Care Home I know I can get her feet tapping to Nat King Cole or Frank Sintra if I pick the right moment

I also think I can get the master of the jive, that big brother of mine, to reminisce about his days when they would be queuing up to partner him at the Locarno.   Elvis or Bill Haley will hopefully bring a smile to his face as he sits in his favourite spot in his Nursing Home.

I have yet to see a situation where music fails to transform those with dementia.  The Entertainments Organiser at Alderlea worked wonders yesterday.  She danced with those who needed a walking frame, held hands with those who were unable to stand and gave her wonderful smile to those who couldn’t speak.  Little wonder that Maureen has settled in a place where the staff always do their best for the residents.

 

Dementia: ‘I Don’t’

Mixed Dementia,

The following  is copied from Linkedin with the kind permission of Norman McNamara:

‘I DONT…………………..

I don’t get angry, I get frustrated,

I don’t mean to shout, I want to be heard,

I don’t mean to walk like I am drunk, I just can see properly,

I don’t want to keep repeating myself,

I don’t want to keep having “Little Accidents” so embarrassing,

I don’t want to see things that others cant see

I don’t want to be frightened to death

I don’t want to scream and shout every night,

I don’t want to hurt you when I am fighting in my sleep,

I DONT WANT TO DIE

I DONT WANT DEMENTIA, DO YOU ??

Norrms Mc Namara Diagnosed with dementia ‘

 

Dementia: What’s Good For The Cat!

Mixed Dementia, , ,

 

Image result for What's Good For The Cat picture

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: ‘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.

Image result for Kelsang Dorde Picture

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::

Image result for leah bisiani picture

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

Image result for The Cqc picture

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:

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.
———————————–
 Contact Roy – please use this e-address

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, ,

 

Image result for Open All Hours Picture

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!