Category Archives: Uncategorized

Dementia: A Moving Song

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Lyrics:

An old faded photograph, is hanging on the wall,
All dressed up, Dad by her side, standing proud and tall,
Now she shuffle’s when she walks, she can’t stand up straight,
Her dinner falling from her spoon, can’t help how her hands shake. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

She loves to tell me stories, often the same one,
The night Dad snuck out from the house, for love about to come,
And finding her there sitting, on the front porch swing,
Handed her a metal washer, as a promise wedding ring. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

I know the news will come, she’s with dad once again,
But I’ll make my weekly visits, sit down reach for her hand,
For there’s nothing I’d prefer to do, on a Tuesday night,
Then hold her hand and listen, to the stories she recites.

There’ll be other faded photographs, young mother’s babes in arms,
Fathers standing by their side, all are safe and warm.
They, too, will have their stories, but if they can’t make the words,
I will read them in their pretty eyes, and they’ll know that I’ve heard. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

For there’s nothing I wish I could do, on this rainy night,
Than to hold her hand and listen, to the stories…
of her life.

SOURCE:

  • Written by Alice Hesselrode and performed by Gregg Steiner

Let’s make Britain Great again!

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George Rook at his satirical best and he does have a point!

georgerook51's avatargeorge rook

A world without diabetes

Diabetes is a disease that is invisible. The disease is hidden, often not diagnosed until it has caused damage.

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Type 2 diabetes is often brought on by being overweight, eating an unhealthy diet, and too much of it.

The UK spends around £9bn a year treating people for type 2 diabetes. (£1bn for type 1.)

The total direct and indirect costs of type 1 and 2 diabetes is around £24bn a year.

It can usually be avoided by having a healthy lifestyle…reasonable exercise, good diet, healthy weight.

The results of diabetes include loss of limbs, loss of eyesight, heart disease, renal disease, extensive neuropathic pain.

I wish to propose that this disease, which is invisible and to a large extent avoidable, should not be treated.

The direct health care savings of £10bn could be used elsewhere to improve care and introduce new, expensive drugs and treatment…

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Dementia: Sharing The Good Times

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When I look back at my Blog over 2017 I have often shared those occasions when I have been struggling: when Mrs. Dementia has been in full flow.

That is only one side of the story and one of my Resolutions for 2018, is, to share the good times:

Maureen isn’t just my ‘Dancing Queen’; she is also my ‘Singer Lady’:

Happy New Year

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 Love verses Attachment

Mixed Dementia, Uncategorized,

Today’s Buddhist message is from Mexico:

The same as any Care Partner I need to focus on Maureen’s needs rather than my own.

She woke up this morning saying that: ‘no one wants me I’m too much trouble.  I can’t do anything for myself now.’

My reassurance that she means everything to me doesn’t cut any ice when she feels so lost and alone!

How often should I visit?

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As I posted yesterday our newly built ensuite Sun Room is now open for family members and friends to stay overnight. This post from Kay Bransford discusses the issue of frequency of visits.

Kay H. Bransford's avatarDealing with Dementia

kayandkittyxmas2014For those who have a loved one in an assisted living or memory care community, this question lurks in the back of all of our minds. There is no right answer, only the answer that is right for you.

I recall several times having voice mail waiting for me asking “When are you coming to visit?” In many cases, the calls came within 20 or 30 minutes AFTER my visit. Why am I visiting when my mom doesn’t even remember it?

I came to realize that I needed to recognize my visits were for me. What was the right balance to not only be her advocate and make sure she was getting the right care, but also ensured that I was also present for my own family. The weekly number of visits fluctuated over the last few years of mom’s life. I always struggled to know what was the right…

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Dementia: A Must Read

Mixed Dementia, Uncategorized,

The following article is reproduced with the kind permission of the author Roy Lilley

Image result for Roy Lilley Picturethe Editor of nhsManagers.net:

‘Ten elderly people with dementia live, in a care home, supported, but as independently as possible.
To provide meaningful day-times, they take part in daily chores and contribute to light housework and preparing meals, under supervision.
Two residents have taken on the responsibility for opening and closing the curtains, night and morning.
One morning it all goes wrong; whilst opening the curtains a resident falls and breaks a hip.  This is reported as a serious untoward incident, the regulators are informed, as are the relatives.  The press get hold of it and the roof comes in.  The whole care model is under threat.
The resident’s participation in their care model comes to an end.
Had the incident been thoroughly investigated, it would have been discovered there was a leak from a radiator which meant the client slipped on a puddle of water.
The rules have now changed, the lives of the residents less interesting because everyone is risk averse.  Managers are thinking about their careers.  Now it’s all about the rules.
Let me ask you some questions…
  • Can you name five rules, in play, where you work?
  • What is the purpose of the rules?
  • What rules would you delete and change?
  • If you could invent three new rules, what would they be?
  • Do you think rules should be made in agreement with the client; if they want to take a risk they should be allowed to do it?
Think about the dignity of risk.  In our lives we compute the risks and decide; we cross the road before the little green man appears…
Now think about a lady with dementia.  She screams.  She screams and screams and screams.  The staff can’t stand it and the other residents complain.  So, they lock her in a room until she stops.
This is called negative behaviour.  A resident with limited communication resources reacts in the only way they can.  They either get violent, withdrawn, or scream.  She has to scream to make a point.
The question is; what point?
More questions:
  • Have you even demanded attention in a negative way?  What was the response?
  • Statement; ‘If a client cries out for attention, it says a lot about you’… discuss.
  • How do you find out the cause of negative attention?
  • What do you think of the statement; ‘if only she didn’t have become a client…’
These are not my questions.  I’ve pinched them from a book by Geert Betting,˜Moving on and Sending Still“.
Fundamentally a book about caring for difficult people in a care home setting, LD and dementia clients but it is so much more…
By accident the book explores the psyche of care and the people we care for.  It asks tough questions and made me think.  The signals we give to the outside world and how we misinterpret them… to our cost.

What group of patients do you work with?

  • What are the similarities among them?
  • Can you, clearly, describe the work you do, to friends and family.
  • Have a few people around you and ask them to write five key words about the work you do.  Ask everyone what they’ve written… what are the similarities?  What do you notice?
  • Do you sometimes say, ‘I don’t have time’… could you have made a different decision?
This is a very good book and read with an open mind can be applied to wherever you work in the care system, regardless of what you do.  Do that and it comes a great book.
Working under pressure, working with scarce resources, working and managing at the very edge…
…this is a clever book designed to make us reflect and is a must read’.

 

Emails between friends

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There is much to write about Maureen’s stay on the Konar Suite and the ongoing aftermath but I was keeping my powder dry for a while. However, I couldn’t let a day go by without posting this blog from my dear cyber friend Kate Swaffer.

Kate Swaffer (she/her) Kaurna Country's avatar

This week I was asked to provide some information about one of DAI’s founding members, the late Richard Taylor Ph.D. I headed to my files (word and emails) simply titled: Richard Taylor. It was an opportunity to reflect when not feeling hopeless, as it’s often Richard who I turn to when I want to give up or it seems too hard to keep going and I feel hopeless.

Some days I imagine we have come a long way, then I read an old email like this, and realise we haven’t come that far. I still miss dear Richard, as I know many others do. And I worry that people do not want to work together, as that more often causes much more harm to the ’cause’, than good. On the days I start to think maybe we have come a long way, I then read an old email trail like this, and…

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Dementia: Dealing With The Machine

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A family member reminded me yesterday that ‘we are dealing with the machine’.  The driver of the machine is the Mental Capacity Act.  It leads to a tick box culture that has little to do with person-centered care.

Maureen remains in an Acute Mental Health Unit.  She said to me yesterday that ‘she has done nothing wrong and should be allowed to go home’.  My efforts to speed up her departure have resulted in the Best Interest Meeting being brought forward to tomorrow.

I appreciate that professional staff are doing their best to ensure that Maureen’s future care and accommodation is appropriate.  My mission yesterday was to speed up the process as Maureen remains extremely frightened by her environment: that is not in anyone’s Best Interest.

Postscript:

I have just spoken to a staff member on Konar.  Maureen is asleep in the lounge in an armchair.  She continues to be reluctant to sleep alone in a strange room.  Her history of domestic violence continues to be fundamental in her presentation.