Category Archives: Uncategorized

Do you care?

George Rook, spot on as always.

georgerook51's avatargeorge rook

Let’s start with a question…

Do you care?

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When people care things happen.

When people care they make things happen.

And When people have personal linkage to dementia they really care, and they get involved, and make things happen.

You all have personal linkage and you all care. And you all are making things happen.

You are a social movement.

Social movements are about people who care getting involved and making things happen.

“Never doubt, said Margaret Meade, that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does”.

We are disruptive.

We have to be disruptive.

We don’t like the status quo.

We don’t want to fit into what others have decided is right for us.

We’re a challenge to existing structures and authorities and power holders.

And they don’t like it much. Why don’t they like it?

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Dementia: ‘Until Death Do Us Part’

Image result for Social Care Facing Collapse Picture

Social Care is on the verge of collapse as Roy Lilley outlines today:

‘What’s gone wrong?
Two things.  The cash anticipated from government, on the face of it, is in line with their promise… pick it apart and it is worth, in ‘real-new-money’, about half the headline figure.  Treasury legerdemain.
The second; in the 100 or so weeks since the Plan’s publication… the collapse of social care.  Growth in demand from the frail elderly is in line with forecasts.  Having them marooned in hospital, waiting to get home wasn’t.
No one predicted the speed with which social services would, effectively, go broke and implode, nor foresee the stream of care providers closing down’.

 

Maureen and I made a vow at Coventry Registry Office: we aim to keep it!

Dementia: Chest Infection?

This infection is now becoming worrying.Image result for chest infection pictures

I have an afternoon appointment at G P Out of Hours.

It is a possible that I have a chest infection.

‘Girl Saturday’ will tend to Maureen.

I’m told she is an  experienced carer.

 

Dementia: A Blessing In Disguise

Image result for A Blessing In Disguise PictureWhen our carer didn’t show this morning I phoned up the Agency to see why she was late. Then I put on my reading glasses and saw the red asterisk on the schedule.  Had I been a little more vigilant I would have taken action earlier and Girl Tuesday would have been here.  However, this is not a mistake I have paid for – quite the opposite as we have had a lovely morning together: singing to Youtube followed by a long siesta.

One of the facets of Maureen’s condition is fluctuation in her presentation.  Last night we slept well together with Nurse Maureen wanting to tend to her poorly husband.  This morning I have struggled to keep up with her dialogue: never quite sure if she was talking about the past, present, or future.   One minute she is talking to me as her husband the next he is the subject of her discussion:  I’m pleased to hear that she generally speaks well of him.

We are both still reeling from this flu-like infection.  Although I’m not pleased about feeling rough I’m reassured that it is likely to be behind Maureen’s time travelling and increased level of  confusion.

 

Moral Dissonance

Straight talk as always from George Rook.

georgerook51's avatargeorge rook

We invest in cancer care because it’s the right thing to do, and because an added qualy year of life is worth £30,000.

But we’ll only invest in dementia care if we can prove savings as a result, regardless of quality of life.

This is Moral Dissonance.

Cancer.

14 days to see a specialist.

31 days to diagnosis.

62 days to treatment.

Near enough anyway, and admirable.

When I was told I had what looked like kidney cancer I wanted to know quickly.

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They said it was highly likely to be slow growing and non-aggressive, and they would recommend monitoring it rather than going through the trauma of nephrectomy.

But I wanted it out. At 64 and with other diseases I didn’t want to risk having a serious operation later when I would be less well than now.

And it turned out to be aggressive.

Oops.

If I have colon…

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Dementia: Frank and Meaningful Talks

Image result for Frank and Meaningful discussions picture

Our Best Interest Discussion went well yesterday and I’m going to request that the meeting is reconvened today to explore some further thinking on my behalf.

Dementia: Light At The End Of The Tunnel

Image result for Light at the end of a dark Tunnel picture

When I explained my thinking on Residential Care for Maureen, to the nurse from Rapid Response   yesterday he said: ‘there was now light at the end of the tunnel’ .  That is not necessarily how I see it but once you accept that Residential Care is needed a spring returns to your step.  The irony is that I’m having to carry on with the type of infection that would have laid me up in my working days.  In fact, we would have both been off work with this persistent virus.

It is fortunate that Lynne, today’s carer, will be here at noon to help us cope today.  I have explained to Maureen that today’s ‘Shopper Lady’ will buy what we need and make sure we are fed and watered.

Maureen’s infection continues to impact upon her presentation: she is very frightened and emotional.  If I am out of site she seeks me out as she cannot face being alone for very long.  It’s a pity she won’t take ‘propolis’, a homoeopathic remedy that always seems to bolster my immune system.  However, it doesn’t seem to be doing much yet so I’m using  paracetamol to keep me on my feet for.

One consolation Craig’s temporary fix on our central heating boiler is holding up. It needs replacing along with several radiators that are long past their sell-by date.  I’m giving the heating system daily TLC as I’m not sure what we’ll do if it gives up the ghost!

Dementia: Distract and Redirect

Maureen has been awake hourly during the night.  I have given her lots of TLC along with drinks and medicine.  At  5 am things changed dramatically as she poured out vitriol about my shortcomings: ‘another lying, cheating man who was robbing her’.  As she ranted she said she ‘wanted a lady here’.  Once again she claimed I had ‘locked her in’, so I indicated where the keys were but warned her ‘it was too cold to go out’.  Thankfully,  she took my advice and curled up on the sofa where coughing fits have accompanied occasional sleep.

If hostilities continue I know there are several options available to me. I have already received helpful advice from the Konar Suite which will lead to a visit from the Home Treatment Team.  In the meantime, I will continue to distract and redirect:

Our carer at noon is an unknown quantity: she has never been here before and we know nothing about her.  In fact, Hales her Agency has yet to forward details of their schedule for involvement here for today and tomorrow.

Dementia: Refusing To Go Into A Care Home

Image result for I WANT TO STAY IN MY HOME DEMENTIA PICTUREMaureen asserted throughout yesterday her right to remain at home.  Despite various attempts to ease her into Ashgrove Care Home, she was adamant that she wanted to stay in her own home.  As she said: ‘I’ve done nothing wrong, I’m not a criminal: you can’t make me go anywhere’.  She also said that if I was struggling to sleep, I was the one who needed help and should move out to allow her own family to look after her.

There is no doubt that Maureen remains a very intelligent woman, able to use logic and rational thought.  Her arguments for staying in her own home were perfectly  understandable considering her experience of Care Homes.  I had to remove her from Ladysmith Road bruised and broken on her birthday.  She escaped from Royal Court and Ashgrove as she hates being locked in anywhere.  Her faltering short-term memory means that she can’t remember the details of her incarceration but the scars are there in her emotional memory.

Maureen was afraid to go into a deep sleep last night for fear of being taken away.  She is now worried if I’m out of sight.  Therefore, we have to be very careful this morning to ensure that our next moves don’t push her over the edge.  Despite being exhausted I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Although I’m exhausted and would love to be enjoying planned respite, I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Gary our social worker will be here this morning.  It is his turn to try to move things forward.   Sue from the Home Treatment Team could get no change out of Maureen yesterday, despite her success a few weeks ago.  After more than half an hour she recommended backing off to avoid further distress. As Sue left, she commented how much Maureen had deteriorated  since her last visit: don’t I know it!

Dear DWP………

How does rejecting this claim fit in with preserving independence? I understand my brother’s PIP is under review and his Alzheimer’s is so far advanced that he is barely able to walk around his Nursing Home: he can do nothing else for himself.  This is another example of ‘dementiasm’: discrimination against those with the condition.

wendy7713's avatarWhich me am I today?

The real impact on real people’s lives………..

Ok, so now you can smile, now you can place a tick against another statistic you’ve won, after all we are just a number to you – a number to win or lose.
But what effect on the real person behind the statistic – what price do you place on people’s lives?

I consider myself to be a strong person and you crushed me for a while, so well done, you achieved your outcome. I won’t appeal as I couldn’t face that whole process again. My life is difficult enough without this on going battle. So, much to the disappointment of many, I wave the white flag to bring an end to this unnecessary stress to me and my daughters – oh, yes…..had you forgotten that your actions affect far more than the claimant? It impacts on the lives of those around them as…

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