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: Give Us Just A Little More Time

Mixed Dementia

 

I have been pressing for a review of Maureen presentation.  This has resulted in the suggestions that a Best Interest Meeting is the way forward.  I’m not sure that a BIM is needed after how she presented yesterday:

Maureen’s presentation will always be a reaction to her environment and how she is being treated.  If living on a building site for three months hadn’t changed her presentation there would be real cause for concern!  Who doesn’t want to get away from it all when your house has been turned upside-down and you no longer know where anything is?

What really needs to be resolved at the moment is:

  • Clarity over Maureen’s diagnosis: is it predominantly Alzheimer’s or Vascular Dementia?
  • Consensus on where to place Maureen on Teepa Snow’s CEMS Model and the attendant approach to support.
  • Adequate support to me as Maureen’s Care Partner.
  • A reinstatement of the role of a Care Coordinator.

Maureen was a revelation in the company of her family yesterday.  Once our renovations have been completed and there is adequate room for her relatives to stay I am convinced we will see a very different Maureen.

Now here’s a thing: earlier this morning I reminded Maureen that four of her grandchildren had been here on Monday – she had forgotten.  As I’m about to post she has just said ‘it was a nice day yesterday’ going on to explain how much better it was to be out in the fresh air rather than sitting in the house when visitors are here.  Such comments give me hope that neuroplasticity is fact rather than fiction!

 

Dementia: ‘They All Know Us’

Mixed Dementia, ,

Image result for Citizen Khan PictureI often adopt a Citizen Khan approach to our life: frequently telling Maureen ‘they all know us’.  Once again the locals came to my rescue yesterday afternoon when Maureen gave me the slip.  It was another one of those farcical events that can leave you bent over with laughter when you look back.

I had been having a Sunday afternoon snooze and woke up to find Maureen had done a runner.  When I made it to the front door she was walking by and I hailed her with ‘hello Blondie’  she responded with ‘I was trying to remember where you lived’ and walked on.  I stopped to talk to a neighbour as Maureen started on a familiar route around a local Court.  Then I walked on to catch her as she completed her circuit but no Maureen. I checked with my neighbour but she had not passed him as he tended his front garden so I retraced my steps thinking she may have gone into someone’s garden.  A few minutes later I gathered what had happened when my neighbour said she was in a Close opposite our house.

Maureen had obviously doubled back and that was why she had not met me at the end of the Court.  Then she had gone back towards our house and ended up in the Close.  When I found her she was on the arm of a woman who lives in a bungalow opposite our house.  She has been kind enough to let us park our car on her drive while skips have taken up our normal parking space.  To show our thanks for her kindness I invited our neighbour in for a cup of tea and she stayed and chatted for a while.

It is so helpful that our neighbours know us and are aware of Maureen’s condition.   I always know if she slips out some kind soul will be on her case within minutes to keep her safe and sound as they usher her back home.

Dementia: Positive Risk Taking

Mixed Dementia

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After a great deal of thought, and frequently changing my mind, I have decided to go for it this morning: 

When I first heard that two family members and their four children wanted to visit today I was aghast.  My first thought was didn’t they understand?   How could anyone conceive that someone with severe dementia could cope with such a gathering?  So I suggested breaking up the visiting party and leaving some of them in waiting until we saw how it was going.  This morning – I think – I’m going to leave it to their discretion as this will mean I have the time to clear up some important outstanding business

If the visiting party arrive before one ‘o’ clock I will hopefully have time to resolve some critical issues for the forthcoming week.  Some of them involve complex matters about my relationship with certain organisations.  I’m not a believer in doing dirty washing in public – unless I have to – and I’m hoping that a little bit of positive risk-taking today will be good for all concerned.

Maureen’s early morning response to the news that visitors are coming today is ‘I don’t know what they look like’.  Showing her photographs and talking about her grandchildren yesterday has long since faded from her memory.  Her current focus is on trying to solve a support issue and lambasting me with a comment that the black bra (which is, in fact, a belt) belongs to my girlfriend.  It’s getting hot here now as she ups the anti shouting out that ‘it’s hers, not mine and it stinks!’  The bra has now been thrown into the wash basket and Maureen is shouting that ‘fat arse has had all of her underwear’.

A cup of tea and a bit of humble pie is my only hope: at the right time of course!

 

Dementia: ‘Suffering Is Hallucination’

Mixed Dementia

Labelling anyone with dementia as a sufferer is totally unacceptable.  This lesson from Dekyong puts the whole issue of suffering into a Buddhist perspective:

Dementia: Too Much Pressure

Mixed Dementia, ,

Posted at 3.30 am

Today’s music is particularly pertinent:

Our house is now a complete mess: nothing like the order that Maureen has lived in all of her life.  We emptied our dining room so the walls and ceiling could be reskimmed yesterday evening.  The bookcase that Maureen has claimed as her own has been emptied:  some of her most precious belongings are in boxes all over the house.  Little wonder she doesn’t know where she is and wants to run away: she is completely lost in her surroundings.

The dining room now needs to be left to sweat – dry out.  Chaos will reign in our household for the next few days.  This will be intensified on Monday when plumbers will be here to begin kitting out our new shower room.

In two weeks time, the pressure will be off and a semblance of normality will return to our household.  We will then welcome visitors with open arms and be able to offer them somewhere to stay as the Sun Room doubles as a self-contained flatlet!

Believe me. I’m always right. About me.

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Another thought provoking post from George Rook.

georgerook51's avatargeorge rook

Believe me. I’m always right. About me.

I was listening this week to a radio programme about personalising health and social care for people…

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Reducing unnecessary hospital admissions…

Providing health care at home…

Treating people as capable of deciding how they wanted to live and deal with risks…

And I was electrified when I heard something that went like this:

“You’re always right about yourself. No one else can know how you feel, what you enjoy and fear, what makes life worthwhile. Everyone elseis always wrong.”

I may be meandering back to my theme of who knows best? Nothing about us without us, but I’ll pursue it a little further.

Professionals, i.e. people employed and hopefully trained to do specific jobs in health and care, are expected by us all to know stuff. We need to trust them with our lives and bodies.

Trouble is, these professionals have…

View original post 279 more words

Dementia: You Silly Man!

Mixed Dementia, Uncategorized

Image result for You Silly Man Picture

Maureen woke at 2.30 this morning struggling with where to relieve herself.  Despite my extensive explanations, she couldn’t find anywhere that was suitable for her to pass water.  After half an hour I sought some sanity with a call to Single Point of Access, followed by a conversation with a colleague on the Konar Suite.  He reminded me of the film 50 First Dates where the subject started every day without any memories.  Then it suddenly dawned on me what a silly man I had been failing to understand that Maureen was telling me she didn’t know where she was.  The fact that she had been sleeping upstairs in our bedroom for a change would really have thrown her!

Whilst I was on the phone Maureen went back to sleep and woke a short while afterward wanting to reminisce about her childhood.  She told some familiar stories and shared experiences that I had never heard of before.  Her memories of her mum, working at the local Post Office and her dad at the Raliegh was vivid.  I’m hoping to cajole Maureen into making a start on Memory Book in the next few days.  This would have benefits both for Maureen’s memory and those who care for her.  A little more thought might help silly men who are awoken in the middle of the night!

Dementia: ‘I Socked It To Her’

Mixed Dementia

Image result for Not Going with the flow

I have never agreed with ‘going with the flow’ as an approach to supporting someone with dementia.  From my perspective, this is an unhelpful approach more suited to describing what happens to dead fish.

Our celebration of Maureen’s daughter’s life was rather an unconventional approach to this journey.  Generally,  one is encouraged not to mention the death of a loved one to someone with dementia as that might start the grieving process.  It did nothing of the sort here yesterday: it helped Maureen to recall lovely events in her belated daughter’s life.

Once workmen were on site thoughts moved in a different direction.  At one stage Maureen lamented a thoughtless care worker for ‘allowing so much noise in a hospital where she was trying to sleep’.  The day before she had been flirting with the noisy culprit as he took down the bars of her ‘prison windows’.

Maureen has often questioned why two of her children have predeceased her commenting that it has not been fair.  She has generally bottled such feelings up.  I think it is possible, that the outcome of a missing sock being thrown in her direction and a spillage of hot tea gave her an opportunity to vent yesterday.  This led to my status falling from hero to zero within seconds.  All sorts of insults were thrown in my direction because my motivation had been ‘to get her wet so she would remove her clothes’.  It would be inappropriate to quote her language and the depths she went to in a blog.

My attempts to rescue the situation failed and Maureen spent the early evening poorly clad.  I summoned help from a female neighbour, and later a relative, but Maureen was having none of it.  A couple of hours later after a hearty evening meal, she changed her tune asking for the trousers that she had sworn belonged to someone else earlier in the evening.

There are two lessons from a very important day in both of our lives.  Firstly, going with the flow is not a sensible approach to supporting a loved one with dementia.  Secondly, if you try to ‘sock it to someone’ make sure they are not holding a hot cup of tea!

Dementia: Immortality

Mixed Dementia,

Last week Maureen brought me the Order of Service for the funeral of her daughter who died 5 years ago today at the age of 54.  I’m not sure she knew what it was she just gave it to me saying that ‘they were trying to steal it’

We have just spent over an hour talking about her beautiful daughter, as some of her favourite tunes playing in the background.  We have kept our promise to frequently use her daughter’s name and never say ‘we have lost her’.

The Order of Service is now a focal point in our lounge and I know Maureen’s daughter will feature constantly in our conversations throughout this Special Day

Dementia: Lucky Breaks or Excellent Choices?

Mixed Dementia,

Image result for Lucky Breaks Picture

Good fortune was a feature of Monday – even the weather played its part to give us a  helping hand on our journey:

  • On Sunday Maureen accidentally damaged a flat screen television that we use as an amplifier for our record player.  Yesterday, on my way to getting it repaired, I called in at a second-hand shop and bought a Music Centre that may make the TV surplus to our requirements.
  • Rain meant that the window fitter had to delay his replacement of our ‘prison windows’ until today.
  • Fine weather is forecast today so our builders will begin laying the concrete floor in our Sun Room.
  • Maureen will have carers with her from 10 am until 5 am today after one of our Care Agencies managed to reschedule hours we were owed from the weekend.  With such a busy day ahead carers will be able to take Maureen out if she struggles with the level of activity here.

Today should be another milestone as our home takes its final steps in the process of becoming more suited to meeting Maureen’s needs.

The Best Interest Meeting that is scheduled early next month is an opportunity to ensure that the level and quality of care on offer will meet Maureen’s needs – more on that at a  later date.

As I said to our Key Worker yesterday, the only CQC rating that will be acceptable for Maureen’s Care Home – our house – is outstanding!

On his Facebook page Kelsang Dorde has offered an excellent choice today:

Tuesday lunchtime Meditation @ Madhyamaka @ 12.30 pm
Become an Inner Being

 

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Thank you for your kindness Dorde: if things go according to plan this morning I’ll be with you in Pocklington by noon!