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.

Dementia: Light At The End Of The Tunnel

General, Uncategorized

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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: Toughing It Out

General

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The advice from all quarters regarding our infections has been to ‘hang on in there’ until the discussion on Monday afternoon.  Rapid Response visited yesterday afternoon to check  our treatment plans were on the nail.  I was told we were following the book in our approach to treating this horrible infection.  Not surprising when Maureen and I have never reached for the medicine cabinet when dealing with a virus.

Yesterday’s  carer was one of us: a solid citizen as one of my friends used to call like minded comrades.  She provided excellent support in our two hours of need.  Lynne is another one of those carers who realises appropriate help is the order of the day rather than playing it by the rule book.   I’m grateful that she will be back later this morning for another two-hour stint.

Once you accept that it is impossible to provide the 24/7 care that your loved one needs light appears at the end of a very dark tunnel.  As Monday afternoon nears that light is becoming even brighter.

Footnote: A very early post as we are following instructions to sleep when we can and ignore what time it is.  We’ve both had our heads down from very early evening and have permission to forget what the clock says for a couple of days!!!!

 

Dementia: A Rapid Response

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I do not feel well enough to look after Maureen as I have caught the same infection that is impacting upon her presentation.

My contact with Single Point of Access means that  Rapid Response will call to assess our needs as soon as they are available.

Dementia: Distract and Redirect

General, Uncategorized

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: Best Interest Discussion

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A ‘Best Interest Discussion’ has been organised for Monday.  I’m optimistic that my suggested way forward will be acceptable to all parties. Why would anyone want to separate a happily married couple?

Maureen has a heavy cough and cold at the moment which is making her presentation particularly challenging.  I hope her infection passes quickly and things become calmer.

Dementia: Protecting Our Best Interest

Mixed Dementia,

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Our phone line was hot yesterday and there was heavy traffic elsewhere.  On occasions, I resorted to a combative style that is a default from years of trade union and political activity.  Sometimes I think pressure and conflict bring out the best in me.  However, in all of this, the consistent advice was to protect our Best Interest.

‘At the end of the day’ as is often said in this neck of the woods, there was light at the end of the tunnel.  I believe there is a way forward to ensure Maureen receives 24/7 care with me by her side.  Discussions are at a very preliminary stage but I’m optimistic that a radical solution is around the corner.

Music was the medicine that kept us both going throughout a rather busy day.  The resident D J played some golden oldies for a couple of hours and his Singer Lady was in great voice. We played ‘Spot That Tune’ for a while.  We also made up lots of other musical games.  John Travolta and Fred Astaire took in turns to take to the floor sometimes dancing alone, others with Ginger and Olivia at his side.

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Susan Macaulay, above on the left, has suggested that we should record events here so that they can be shared on my blog and elsewhere.  This is something we need to explore when the time is right and we have protected our Best Interest.

Chloe is back today and Maureen is really looking forward to seeing her.  Gail has played a blinder in the last couple of days.  If ever I wanted to set up an Agency training care staff these two excellent women from Hica Care Agency would be part of my team.

I continue to count my blessing that we moved to Cleethorpes.  Like all local authorities, North East Lincs continues to be hampered by Austerity Measures.   However, I never doubt the integrity of professional staff as they do their best to paper over the cracks.  Unfortunately, we are already at the sharp end of the crisis in Social Care: a largely unregulated service that is underfunded.  It’s no consolation to know that we didn’t vote for Osborne and his mates from Eton and never would!

Footnote: A rather special song is on my Good Music page today.

Dementia: Seeking A Best Interest Decision

General, minimising distress,

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I contacted Single Point of Access -Focus at 2.30 am to request a Best Interest Decision this morning on her future care and accommodation needs .

Maureen has kept me awake for most of the night because she has an infection.

I will seek an appointment with her GP this morning to try to prevent a heavy cold becoming something more serious.

A home visit may well be necessary and will be available if needed: we can always depend on Clee Medical Centre.

Our social worker is not working today so I have requested the Duty Manager to facilitate the Best Interest Decision.

To put it mildly, I am rather tired: no Care Partner can sustain being on duty 24/7.

Footnote: Posted a little earlier this morning in a quiet moment as Maureen sleeps.

 

 

Dementia: Safeguarding and Duty of Care

Mixed Dementia

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Formal processes are underway about Maureen’s appalling experiences in Care Homes.

It would be unfair to detail our concerns before they have been fully investigated.

I have distracted and redirected all day with little impact.

Maureen still feels betrayed: that I have conspired with other to lock her away.

She does not accept a promise that from now on they will not separate us!

Dementia: Knowing Who To Trust

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I will be talking to people I trust this morning.

The abuse of our loved ones in Care Facilities has to stop.

However, this it is not a time to issue Press Releases and return to my campaigning days

We all have to work out the best way to respond to our dereliction of duty.

In Maureen’s words: ‘we tricked her into a Care Home that was an absolute NIGHTMARE’.

However, I was not the only one who was complicit in a failure of our duty of care.

Just to add to our woes our heating is broken and its freezing here this morning.

One thing is certain once I ring Dave this morning his man will be here soon after.

It’s always important to know those people who you can really  trust!

Footnote: I’m struggling to respond to Comments as I’m desperately trying to rebuild a semblance of trust with someone who feels her husband has sold her out!

Dementia: At Risk And Neglected

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I removed Maureen from Ashgrove Care Home this afternoon because she was at risk.  On my arrival, they didn’t know where she was.   It took me a while to discover her in an unused part of the building that is accessible and unsupervised.  She was struggling to get out of an unlit room.

Maureen is a shadow of the woman who went into Ashgrove five days ago.  She is very confused and is trying to relate various incidents that continue to give to give her cause for concern.

It would be unfair to detail my concerns in a blog.  Once the dust has settled I will be formulating an official complaint.  I’m so grateful to Jayne Connery for highlighting that CCTV is needed in all Dementia Care Homes: bring it on!