Category Archives: Uncategorized

Dementia: ‘Help Me Get Better’

Image result for Help Me Get Better Picture

After a two weeks respite break, it’s taking me a while to get up to speed as Maureen’s Care Partner.  I was struggling last night when Maureen thought a woman was going to ‘steal her food and cause her harm.’  She also said that this woman had ‘taken her baby away.’  It took me a long time trying to reassure her that I would keep her safe and ease her into sleep on the sofa.

One good piece of news is that Maureen’s eye infection is clearing up.  The antibiotic cream prescribed over the phone by a Practice Nurse seems to be doing the trick.  Perhaps such minor concerns can be dealt with over the phone but we are really missing the support of our old GP who has retired.  He would have seen us at the drop of a hat!

As I type, Maureen is crying in the next bedroom and when I go to see her says: ‘help me get better’.  I reassured her that I’ll do my best!

Dementia: Happy Valentine’s Day

As you will see Maureen was delighted with her Valentine’s Day present this morning:


Seeing the joy on her face this morning has persuaded me to go ahead with my birthday plans for next week.   I have had a chat with Thoresby Hall and they assure me they will do all they can to support us during our stay.   Positive risk-taking remains the way forward here we will never subscribe to ‘Prescribed Disengagement’.

N.B. I hope my editing of the photograph has shared  Maureen’s joy without compromising her independence.


Living with dementia is better than expected…

I can’t wait to meet Kate Swaffer to personally thank her for helping us to see that a diagnosis of dementia is a new beginning rather than the end.



If people would proactively and positively support us to do so, and stop telling us all to go home and prepare to die, via aged care, living with dementia can be far more positive than I ever expected. I was interviewed in Singapore last year when support the Singapore Alzheimer’s Disease Association in an article in the Straits Times which you can read in full here. There are a few very minor errors in content, and having my age of diagnosis noted differently in two places, but overall, it is a really positive, respectful and well written piece. A pleasant change to work with a journalist who wants to write the truth, with no have hidden agendas.

View original post

Dementia: A Moving Song




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.


  • Written by Alice Hesselrode and performed by Gregg Steiner

Let’s make Britain Great again!

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

george rook

A world without diabetes

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


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…

View original post 288 more words

Dementia: Sharing The Good Times

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

Image result for The Cqc picture

The following article is posted with the kind permission of Roy Lilley, editor of

‘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

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?

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.

Dealing 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…

View original post 100 more words