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.

Do you care?

Uncategorized

George Rook, spot on as always.

georgerook51's avatargeorge rook

Let’s start with a question…

Do you care?

image

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: Solving The Crisis In Social Care

General

Image result for Roy Lilley Picture

Roy Lilley has provided immediate solutions to the crisis in Social Care in today’s Newsletter:

‘Close the CQC it hasn’t improved quality, costs a fortune and demotivates all concerned; recognise technology takes us beyond the clip-board era.  
 
We can, now, answer the question; ‘how did we do today’, by plugging into data and key indicators, measurable in real time, with the use of technology we can all see.

 

Pay and train family members as carers, to look after the frail elderly at home.  Pay net of tax, provide respite.  

 

Create tax-sweet savings bonds for whole families to pay into; syndicating the costs of care for frail elderly relatives.  If, when the time comes, there is a residual in the bond allow it to be used, tax free, for education and house purchase for younger members of the family’.
Roy’s practical ideas on how to solve the crisis in the NHS are well worth reading!

Dementia: Being Upfront

General, Mixed Dementia

Image result for Being Up Front PictureI have now left professional staff in no doubt about the outcome I’m looking for at Friday’s Best Interest Meeting.  Maureen and I want to stay together and I will play no further part in any plans to put her into permanent care. However, I would want the meeting to come up with a safe solution for Respite Care.

There has never been a satisfactory outcome when Maureen has gone into Respite Care.   On her birthday I found her bruised and battered in a place that a Specialist Doctor said was likely to lead to a further deterioration of her condition.  Then she escaped from another Residential Home and refused to move from the Centre of Cleethorpes until I came to pick her up.  A later attempt resulted in a phone call to inform me the police had found her when the Care Home were not aware that she was missing.  Finally, I visited her at the aforementioned  Home in the latest attempt at Respite and the staff were unclear of her whereabouts.  Eventually, I found her in what is called the ‘new build’; a suite of rooms yet to be brought into commission.  She was shut in an unlit room in an unsupervised part of the building. Following this incident, this area has eventually been made inaccessible.

I think there are serious questions to be asked about the monitoring of  Homes where we have sought Respite with the support of the Local Authority.  Maureen has been at risk on four occasions and there are issues about the reaction from a number of quarters.  Consequently, I’m in the process of seeking legal advice on how my wife is being put at risk when we are paying the going rate and anticipate a duty of care.

It has taken a while for me to comprehend why Maureen keeps saying that ‘I ‘ve tricked her or I’m attempting to trick her’.  I think it is her way of saying that I have sold her a pup – saying: ‘Respite will be good for her when it has clearly not’.  I have given her my word there will be ‘no more trickery from me’ and that from now on we’ll  stay safe together!

 

Dementia: ‘Until Death Do Us Part’

General, Uncategorized

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: You’ll Never Walk Alone

General

Tom Schuller now a Professor has always encouraged me to share what I have learned on this blog.  He was a Senior Lecturer when I was one of his students at Warwick University almost 30 years ago.  His supportive guidance eased me through a Masters Degree in Lifelong Learning and the Management of Change.

This Blog has always been part of my coping strategy; it has aimed to  be an open account of our journey.   On occasions, I have pushed my luck and may have shared a little too much detail: thanks to the goodwill of others I have got away with it.  I hope that readers will understand my need to depersonalise my posts from now on and not use names or photographs without the prior agreement of the subjects.

To return to Tom’s challenge I ‘walked through a storm at 2.30 this morning’ whenMaureen didn’t know where she was; who I was, and was terrified.  As always I accepted her reality and tried to give supportive answers to her questions.  Then I gradually introduced objects that confirmed our togetherness, such as presents to one of us from her children.  As a cup tea worked  wonders I fired up YouTube and introducing my dad into the equation I put music connected to the RAF and remind Maureen how much he liked her.

Luck or intuition from YouTube then put the icing on the cake with Last Night of the Proms on screen.  I remembered Maureen’s affinity with classical music and we were still going strong 3 hours later.

The lesson from all this is that:

There is always someone, somewhere to help you on this journey.

Footnote: Now in Maureen’s reality: ‘it must be almost midnight and I’ve had that music thing on for ages and it’s time to go to sleep’.  I hope I will be able join my wife in a little more shuteye.

 

 

 

Dementia: The Fight Within

General,

I have a chest infection and have been prescribed antibiotics.  My sinus passages are blocked and I’m taking paracetamol to try to keep my temperature down.  Maureen is far from well with symptoms that need checking on Monday with a home visit from our G P.

I’m using this  poem by Normms McNamara  (diagnosed with dementia 6 years ago at the age of 50) to think about how she might be feeling about her dementia:

Image result for norman mcnamara torquay picture

‘THE FIGHT WITHIN

You read my posts, you see my pics, but cannot hear my thoughts,

The fight within, rages on, so desperate and so fraught,

I`m disappearing within myself, a little at a time

Every day my mind grows smaller, such a human crime,

Some days i sit for hours, with nothing in my head,

As the day drags on, its the evening that i dread,

Short burst`s of clarity come to me, every now and then,

I write them down, send off to you, and then i`m back again,

All alone within myself, getting ever smaller,

Suffering the blows, of Dementia`s brawler,

So if one day i disappear, before i say goodbye,

Always know your friendships, in my heart forever lie’

 

 

Dementia: ‘I’m Still Winging It’

General

Image result for Still Winging It Picture

If my performance as a Care Partner for Maureen was being observed by football supporters I’m sure they would be singing : ‘you don’t know what you’re doing’.  This familiar retort when the referee makes a bad decision would ring out on our terraces here on many a day.  As the man in the middle, I could argue that I have my badge, an NVQ Level 2 in Dementia Care, and I’m not going to offer the whistle as I know my wife better than anyone.

Although I’m qualified to care for Maureen there are shortcomings within my skill set.  Throughout my working life, I have predominantly been a Group Worker even though my Initial Training included Counselling.  More importantly, I have not had a supervised placement in this field or an opportunity of shadowing an experienced practitioner.

Time is never on your side when you are a Care Partner for a loved one with dementia.  You may feel you have got the hang of it until one day you are caught out as the goal posts have shifted .  I sometimes feel I’m not keeping up with the game as Maureen’s presentation throws up new challenges.  It is fortunate that telephone advice is so readily available.

In the 90’s I sought support from a therapist  when I was ridden with guilt following divorce and  separation from my children.  Jenny used Transaction Analysis to help me put my situation into Eric Berne’s framework – always advising me : ‘if something isn’t working – try something else’.  When the going gets challenging here it is one thing I try to keep in mind .  Unfortunately, I’m far from match fit at the moment with a chest infection taking its toll but those antibiotics will kick in soon and I’ll be BACK!

Dementia: Chest Infection?

General, Uncategorized

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: Purifying Our Mind

General

I put on YouTube this morning and there was Dekyong sharing wisdom:

I have found this teaching inspiring at a very challenging time in our lives.

Dementia: Always On My Mind

Mixed Dementia

I have been advised to take Special Measures to attempt to minimise Maureen’s distress until a Best Interest Meeting at 10.30am on Friday.  This is because when we  leave the house she is totally disorientated on our return.  Yesterday was a repeat of the previous day when she became very hostile and aggressive following a short car trip to the shops.

There is 24-hour telephone coaching available whenever I need support.  Two of my neighbours are on red alert if I need immediate help.  I am also reassured that this Blog gives me access to support from far and wide.

I have alerted Ashgrove Care Home to the possibility of emergency admission.

Professional advice is to try to keep things simple for the coming week.  Unfortunately, there is a new Carer on the block today and tomorrow; thankfully familiar faces for the remainder of the week.

My current infection may be my salvation as I won’t feel well enough to go too far.  This may focus ‘Nurse Maureen’s’ attention on keeping me well.  It matters not that she sometimes calls me dad, grandad or an old work colleague.  Even with dementia generally calling the shots, she is still that nurturing loving person I have been privileged to  live with, and love, for 25 years.

Footnote: Normal blogging will be resumed as soon as possible.