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

Another thought provoking post from George Rook.

george 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…


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…

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Dementia: You Silly Man!

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!

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Dementia: ‘I Socked It To Her’

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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!

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Dementia: Immortality

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

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Dementia: Lucky Breaks or Excellent Choices?

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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


Image may contain: 2 people, people standing, people sitting and indoor

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

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Dementia: Take A Breath With Teepa

The other day a relative asked me for some advice the on how to provide support that would be helpful to Maureen during his visits – so I pointed him in the direction of Teepa Snow:

I have had to follow Teepa’s advice many times during the last 24 hours.  I am the only person who has been able to persuade Maureen to take a bath or a shower in the last couple of months.  There was a heavy price to pay for my success yesterday as Maureen struggled to accept that she had chosen to spend the day in her dressing gown without anything underneath.

Early this morning, things were very challenging with Maureen becoming hostile as she tried to resolve a clothing crisis.  She became rather uncomfortable when she put the leg of her pants around her waist and began lashing out at me in frustration.  Help arrived in the form of Night Rovers as things had cooled down.  By the time that the ladies from arrived Maureen had pants. PJ bottoms and a T Shirt on for the first time since her Sunday morning bath.

One of the problems at the moment is that Maureen is finding it difficult to hear or understand what I believe to be straightforward instructions.  Taking deep breaths along with giving simple instructions has to become automatic from now on.

Slightly more than deep breathing might be needed this morning as all windows are being replaced at the front of the house. At the same time, our builders are into the final week of the Sun Room.  It’s another one of those occasions when there is no gain without pain.  Once our window fitter is done, Maureen will no longer be looking through leaded windows which remind her of a prison cell.  The Sun Room will mean that Maureen’s Care Home is fit for purpose at long last!

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Dementia: ‘Two Things We Need To Do’

In the second of my weekly Buddhist teachings I offer a simple message  from Dekyong:



Maureen ‘brought the house down’ yesterday singing along to the Sound of Music.  Our builder even switched off Radio One and stopped plastering once he heard the Sound of Maureen.  It was lovely to hear her accompanying Julie Andrews as her focus shifted from her thoughts about a dead baby.

She is in good form this morning after relaxing in a warm bath.  I have no idea how home carers are expected to get a service user bathed in a half an hour call: Maureen is still in her dressing gown and unfed an hour after I began coaxing her in the direction of the bathroom.

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Dementia: Remember Me

This is our song of the week:

In the week that I have mentioned the work of Dr. Dan Nightingale, this song gives me room for optimism.  Maureen had never heard of Christie Hennessy until some time after her diagnosis of dementia.  If she can sing along with Christie, almost word perfect surely I can help her to remember that she did everything she could when her child died almost 60 years ago.

I’m hoping that emptying her bookcase in the dining room will give Maureen purpose this morning.  This will then enable us to strip the remaining wallpaper so the room can be skimmed in a week’s time.  The only wallpaper that will remain in the dining room is the wall that was decorated by Maureen several years ago.

As we labour this morning I will remind her who taught her to decorate: her granddad. She has such beautiful stories to tell of her childhood that such memories might help her to cope with her grief.

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Dementia: Don’t Grieve Conceive!

Posted at 2.00 am:


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I have just phoned the Konar Suite to speak to a Nurse to check whether my support to Maureen has been appropriate.  She was in floods of tears a short while ago because ‘they had found a dead baby’.  This was the second time this week that she has been overwhelmed with this thought.

When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’.  Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming.  She didn’t know that Maureen’s second born had died at three months when she was twenty-one.  I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.

Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7.  This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house.  She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution.   Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a  replacement for a young child who never made it to his first birthday.

If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life.  She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!

Footnote:  Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!



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We are the Disrupters

George Rook always telling it as it is. I meant to Reblog this yesterday but our Adventure meant an early morning departure and lots of things didn’t get done!

george rook

We are the disrupters!


You know, the thing about being a volunteer activist in healthcare is that it’s sooo frustrating.

There are various mantras around…

Nothing about us without us…

Do it with us not to us…

But we’re always fighting against an imbalance of power. Against a hierarchy where we are at the bottom, if even not in it at all.

We attend meetings where the agenda is set by the organisation, the hierarchy.

We make our points, we challenge, we suggest, we want to “work with” to get change.

And we’re told…

Well that’s not altogether true…

We can’t do that…

Our staff are sick of action plans, we can’t do any more…

Staff are sick of innovation and change projects…

So we are squashed into submission, because of course we don’t have the power.

Most healthcare (and other) organisations are old power hierarchies. They do to people…

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