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.

Don’t give up

Kate has helped us so much and this post says it all.

Kate Swaffer (she/her) Kaurna Country's avatarLiving Beyond Dementia™

jonathonLike my food blog, I’ve not been here for some time… The only suggestion I can think of this week, for living beyond dementia, is to not give up! A very close friend’s son died unexpectedly, a colleagues house burned to the ground, including their pets, and the week before that, a close girlfriends husband had a major stroke.

Dementia is definitely not the worst thing that can happen to you or someone you love, which I feel is worth remembering…

When you fall over, get up. When you fall off your bike, get backup, fix the bike, patch up your wounds, and get back on your bike.

When you feel sad, cry a while, then get back to living. When you lose someone you love, or someone you love loses someone they love, cry a while or a lot, then get back to living.

If you get dementia or someone…

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Dementia: A Silly Mistake

Image result for A silly Mistake PictureI made a silly mistake on turning in last night: I chose the wrong bedroom.  When Maureen woke in the early hours and found me in the marital bed she let me have it.  The onslaught lasted for over half an hour as I was told in no uncertain  terms what a s*** I was. Fortunately, I’ve now got a strategy for ‘cocking a deaf un’ so that I don’t absorb the vitriol and there was a bonus on-line.

Tara Quirke, in Australia, was on hand to sooth my troubled thoughts and offer warm words of encouragement -another Gem from Down Under. What she didn’t venture was I could have prevented the torrent by taking to the spare bedroom.  This will be my ploy in future to encourage ‘Mrs Dementia’ to stay in the closet so Maureen and I get a good night’s sleep.

The proof of this pudding is in the eating: Maureen has just joined me at the keyboard and I have eased her into the Girls Dorm.  She is a little unsteady on her feet this morning and feeling dizzy.  Her grip is strong and she can smile so I’m encouraging her to take further rest.  Just to be on the safe side I will relocate the Baby Monitor so I can hear her whenever she wakes from her slumbers.

Dementia: ‘Girl Friday and the One Down Under’

Image result for Girl Friday pictures

I’m always pleased when the arrival of Girl Friday is pending.  She has been supporting us for over two years now and feels like one of the family.  Her contribution to our well-being continues to be considerable.  I have mentioned in previous blogs that by sitting next to Girl Friday I have learned the ropes of being a Care Partner for someone with dementia.

The other ‘ladies’ as Maureen calls them have all done sound work this week.  Their kindness is outstanding as they all go well outside their duties to minimise Maureen’s distress.  One of them has made Maureen a tea cosy in the red and white of Nottingham Forest.  Another brought along a puzzle book to entertain Maureen, whilst one of  her colleagues may have resolved the underwear crisis.  I could go on to describe how these wonderful ladies put the icing on the cake day after day.

The ladies all fill in a journal of their daily experiences here: a living record of Maureen’s presentation.  Unfortunately, their notes appear to be filed away – left unread.  Which puts into context the now postponed attempt at Memory Testing.  I continue to ask myself what is the point in such assessment when Maureen’s presentation fluctuates and a living record appears to be ignored!

Image result for Kate Swaffer picture

I understand that if a Best Interest Meeting ever takes place that my request to have Girl Friday in attendance has been heeded. I certainly hope that this hard working dedicated woman is paid for her troubles and treated with respect.  How ironic that the lowest paid member of our support team- on minimum wage –  might struggle to claim travelling expenses for further support to us!

The Chief Executive’s Office of NAViGO has advised staff that further contact is to be avoided until we meet on Monday.   It is good to know that we can still call on the Home Treatment Team if there is a crisis.

Today’s Good Music is dedicated to my cyber friend Kate Swaffer; our ‘Girl Down Under’: an amazing woman who highlights the need to ditch Prescribed Disengagement.

Dementia: ‘I Am The Way’

In an effort to add an air of lightheartedness to proceedings this morning I introduced Maureen to Loudon Wainright on YouTube:

I remember seeing Loudon live in Coventry almost 40 years ago.  The above video is well worth watching.

Dementia: Unbelievable

Image result for I dont believe it pictureI will be contacting the Chief Executive’s Office of NAViGO this morning to request that her staff do not darken our door until after our scheduled meeting on Monday.

Two Support Workers arrived, unannounced, at our house  yesterday evening to conduct the MMSE Memory Test on Maureen.  Fortunately, she was asleep and common sense prevailed.  Perhaps I should have told them that she had already graduated to the ACE 111 Memory Test last year  when the Memory Service determined that further testing was pointless because of their diagnosis of ‘dementia: predominantly vascular’.

A Specialist Doctor told me in July that Maureen’s condition is now classed as moderate to severe dementia.  There is a distinct risk that further testing will unsettle her as she will see it as  another step on the road to locking her up in a Care Home and throwing away the key.  I hope common sense prevails this morning: this is far from person-centred care!

The  approach to dementia has major shortcomings which we have to endure day after day:

  • The services for dementia are rooted in mental health.
  •  The experiences of those who care for Maureen on a daily basis are consistently overlooked or ignored.
  • Professional staff consider what is happening here from the wrong perspective: dementia is not caused by an affective disorder of the mind it arises from a damaged or dying brain.

The professional approach to what is going on here will continue to be UNBELIEVABLE while the current setup remains.

Maureen has woken this morning wondering why we are in a foreign country.  This was a familiar question in the days following stroke at the beginning of 2014.  I will seek an appointment with her GP this morning to discuss her presentation.  She is fortunate that there is someone who knows her well, treats her with respect, and will listen to what she has to say with an open mind.

Dementia: ‘Watch Thee Back Lad’

With a Best Interest Meeting on the horizon, there is much to be done.  I have a meeting with my Advocate this morning and an appointment with my Counsellor this afternoon.  This video from the Alzheimer’s Care Resource Centre is a helpful focus for what lies ahead:

I went to bed early last night and left Maureen downstairs.  I awoke at 2 am to find her sitting in an armchair.  She told me she has been helping a couple of ladies who were holding a sale on the sea front.  She believes she has disposed of some unwanted clothing.

Maureen’s diet has been interesting in the last few hours; a mince pie and some Christmas Cake. Her thoughts are concerning:  ‘I’m her husband; a miserable possessive old man’.  Apparently, we rarely do anything together; I come back here for food and then go out by myself.  My expectation is that she’s the little woman who stays at home and attends to my needs.

Image result for Dennis Skinner Quotes Picture

Maureen is clearly travelling back in time to  a very unhappy era in her life.  It is very sad to see her in this mode and as  dementia progresses my role as her Care Partner becomes increasingly challenging. It is perhaps the time to heed sound advice from  Dennis Skinner ‘watch thee back lad!’

Postscript: Maureen thinks we are in London this morning.  She is angry that I have sold our house in Cleethorpes and brought her here against her will.  I will just have to vacate the room to leave her to her ranting!

Symptom Progression and Strategies 2016 December

A very interesting post by Tru.

Truthful Kindness's avatarTruthful Loving Kindness

Tru here.    (Sorry; it is not a glitch; my brain is just not working well enough to come up with a graphic.)  I realize it has been a month since I have last written a blog.  There is a good reason these have been less frequent;  Doctor and I just call them “events”, but current theory is that I am having tiny strokes.  This is supported by my MRI, and part of my current diagnosis is “mild to moderate cerebrovascular disease”.

First event was probably mid-February 1999 (year before they first pulled my driver’s license and awarded me permanent physical and cognitive disability).  Most recent was about 10 days ago.
Frequency has slowly progressed from every few years, to every year, to every few months … then every month, and now three events in six weeks (every two weeks).  Consistently, after each event I experience almost a week of dramatic fatigue and…

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Dementia: Nationalise Southern Cross

  I know I planned not to post on Tuesday’s but this can’t wait: 

For yer granny
News and Comment from Roy Lilley @ nhsManagers.net

 

Lady Day, Midsummer Day, Michaelmas and Christmas.  They are ‘quarter days‘.  The quarter days were the four dates in each year on which servants were hired and rents were due. 
The significance of quarter days is now limited, although leasehold payments and rents for land and premises in England are often still due on the old English quarter days.
Quarter days have been observed since the Middle Ages.  Accounts had to be settled, a ‘reckoning’ had to be made and publicly recorded on quarter days.
There is a reckoning on the way and it can’t be far off.  I shouldn’t wonder if the Christmas quarter day hasn’t got something to do with it.
It could be a fearful reckoning for 20,000 of some of our most vulnerable and frail citizens.
Last week, Four Seasons Health Care, the biggest care home operator, as reported in the £walled Times, told creditors that its £515m debt burden was;
 “… not appropriate for the long-term needs of the business”. 
In English I take that to mean… ‘we’re going broke’.  My guess is a whack of repayments will be due on Xmas quarter day.
Southern Cross is in the eye of a perfect storm.  Borrowings set at a time when the world was a different place, penniless local authorities cutting care home fees, the hike in the living wage and increases in utility, regulatory and other costs.
Margins in the care home sector are slim at the best of times and this is far from the best of times.  Rumour has it, the venture capitalists, who fund Southern Cross, are on a 12% return.  It’s a complex business.
Likely scenarios?
The lenders could take a hair-cut; reduce fees, payments and spread the life of the loans.  Putting aside all compassionate grounds for keeping this business going, I doubt they’ll do that .
Look at the future from their point of view; councils and the NHS are not likely to have more money in the foreseeable future.  Maybe a bung in the months prior to the 2020 election?
After the election the pressures and confusion of trying to wriggle out of the EU, the damage to the economy and uncertainty means the Treasury is unlikely to relax its grip on public expenditure.
The care sector is not (as venture-caps put it) a place ‘to be exposed in’.  Anyone with an ounce of common-sense would say; get out.
It might be possible for Four Seasons to find another funder.  A bail-in.  Borrow more money, over a longer period, at a cheaper rate; buy-out the existing debt… trade on.
There are two doubts.
The first; it’s unlikely that a new funder would take a chance on business so dependent on a public sector customer.  Councils are no longer the gold-plated payer they once were.
Second; I’m guessing; contractural arrangements would prevent a buy-out or switch.
Sorry but I think it inevitable; Southern Health will go broke.  They are struggling-on, causing all sorts of confusion and worry.  If you have a relative in a Southern Cross care home and you can, I’d move them.
What happens if they go broke?
The CQC have the responsibility for overseeing the financial governance and solvency of providers.   I wouldn’t trust the CQC with the Christmas Club money, never mind an opaque venture-cap deal.  
CQC chairman, ex-PWC honcho, Peter Wyman probably recognises the inevitable but will be powerless to stop it.
Prepare for thousands of frail people, wrapped in cellular blankets out on the street?  The CQC has done it before.
Too awful to contemplate? What would you do?
If debts aren’t paid, the court orders will start flying.  Homes will be repossessed and no amount of contingency planning on the part of local authorities, huffing and puffing from the CQC, or the industry itself, circling the wagons, will solve this.  There isn’t the spare capacity in the system.
The solution; nationalise Southern Cross, get on and do it now.  A one line Bill in the House of Commons, unopposed and passed in a day.
Let health and social care run local homes jointly, get them back on their feet and later, sell them back into the sector in small lots, at a profit.
Sound familiar?
Yup, we did it for the banks… now let’s do it for yer granny.

Dementia: Hollow Cry’s

Normms again:

 

Image result for Picture of norman McNamara

Hollow Cry`s

Hollow Cries from deep inside

Eyes that weep but cannot cry

Open mouth and yet no sound

Familiar Voices all around

Walking around in a dream

Nothing`s real, or so it seem`s

Waking nights, sleeping days

Eating meals through Foggy Haze

Un-Familiar mirror reflection`s

I`m never right, always corrections

All these things, and much more,

As dementia knocks at your door

Cc Norrms xxxxxxxxxxxx

Taken from my book “Silent Voices “

https://www.amazon.co.uk/Books-Mr-Norman-Mc-Namara

Dementia: You Never Can Tell

 

I was rather taken aback on Friday when I met our social worker and he told me that a Best Interest Meeting was still on the cards.  A few days later my feelings are ‘bring it on’: it’s time to wipe the slate clean and have a wide-ranging discussion about the options for Maureen’s care and accommodation.  However, I’m not convinced that the expense of a BIM is justified when there is appears to be consensus on the way forward: certainly  amongst family members.  In fact, I think it would be relatively simple to tie up a few loose ends and move forward on a fresh footing.

On Sunday morning I was pessimistic about the prospects of a  proposed surprise family visit.  When I heard that six additional bodies were going to be in the house I panicked. My caution was misplaced and a well-planned visit went exceptionally smoothly.  Even though she slept for a long time after the visit I’m sure this  enjoyable occasion will remain in Maureen’s memory for a long time.  She may mix up names and families, but very positive feelings will still be retained in her emotional memory.  Although she hasn’t mentioned the visit again since they waved us goodbye yesterday afternoon and headed north.

I am also rethinking about making for the door as soon as carers arrive.  Whenever I’m out of sight and Maureen is unsure where where I am she is frightened.   She is frequently worried that I’m going to leave her for good,  despite me providing  constant reassurance, she thinks I’m in the market for a younger model:  nothing I say seems to shift her from this nagging doubt about my loyalty.

My loyalty to Coventry City is being stretched to the limit.  It’s not because the Sky Blues are on a bad run: the club is in chaos and the sooner SISU the current owners  sell up the better!

I’m yet to decide what to do when Girl Monday arrives this morning.