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: Tears In Heaven

Mixed Dementia

My brother in law assures me he would have opened our Sun Room on Tuesday with the above number if the acoustic had been right.  However, as the flooring had not been laid the sound check was not to his satisfaction.  He assures me he will be back once the vinyl is laid!

The standing joke in our family is if you mention an artist or a band from the 60’s my brother in law swears he has backed them.  Who am I to contest his distant memory of playing with the Chicanes alongside the Cream at the Swan at Yardley when Clapton was a member?  What is beyond refute is the exceptional support my sister and her husband gave us when they visited on Tuesday.  As the man says: you find out who your friends are when dementia is in the household!

We have had another good night’s rest.  Maureen woke at 4 am worrying that ‘they had all gone’ and she had been left here by herself.  This fear of being deserted is constant and she expects me to leave her: to run off with another woman.  Just to put her mind at rest this morning, I’m going to suggest that she accompanies me to Cleethorpes Leisure Centre.  It would be wonderful if I could persuade her to have a swim but even walking along the Promenade with Girl Saturday would be real progress.  Then if the going is good we might even have a snack at one of the cafes on the seafront!

Dementia: The Most Amazing Day

Mixed Dementia

Posted at 6 am after an amazing sleep.

Image result for An Amazing Day

Yesterday was nothing short of amazing.

We received outstanding support from the early hours and Maureen thrived as the day progressed.

  • Our early morning visitor, a nurse, gave me a bird’s eye view of the Konar Suite and paved the way for a personal inspection.
  • Our Key Worker phoned at 8 am to catch up on developments
  • Once the after effects of lorazepam wore off Maureen was in great voice.
  • The  Home Treatment team rang by 10 am to check on Maureen’s sleep pattern.
  •  As soon as ‘Girl Friday’ arrived Maureen asked her for personal care.
  • My conducted tour of the Konar Suite took place before noon.
  • On my return home, my well-groomed wife was singing along with Girl Friday.
  • An impromptu call at Clee Medical Centre led to a GP appointment.
  • The dip test suggested Maureen doesn’t have a UTI.
  • Maureen’s blood pressure was excellent; lower than it had been for ages.
  • Maureen had great fun playing with a four-year-old boy in the Waiting Room.
  • Maureen loved shopping in Cleethorpes and seeing lots of friendly faces.
  • Maureen fell asleep late afternoon and we have both slept for most of the night.

On reflection, I think it is possible that Tuesday’s visit by Occupational Therapists spooked Maureen.  She may well have been thinking ‘he is conspiring to lock me away again’ and sought comfort in delusions on Wednesday.  I realise this is all conjecture, but what else is there?

There are no experts on dementia – only considered points of view!

Dementia: Reviewing The Situation

Mixed Dementia, ,

Maureen is very shaky this morning.  She is more confused than ever and unsteady on her feet.  A small amount of lorazepam has given her much needed rest and some respite from her delusions.

I’m currently reviewing our situation.

Dementia: It’s All Been Worth It

Mixed Dementia, ,

Image result for It's All Been Worth It

The struggles of the last few months all seemed worthwhile yesterday when our visitors from Occupational Therapy made it clear that they supported our approach to ‘seeking the good life’.  They were impressed with our extension and how we have attempted to prepare for what might lie ahead.  They also supported how I attempt to resolve issues of independence and safety.  Once we have made a couple of minor changes to our set up OT feel that we have addressed all predictable risks.

Maureen was in exceptional Hostess Mode all day.  Her intelligence and humour shone through as she showed OT the ropes.  She continued in a similar vein when in the company of my sister and brother in law.  In fact, she was in such good form that there were occasions when some observers may have questioned her diagnosis of dementia.

Maureen has paid a heavy price for the overstimulation that I subjected her to yesterday.  She is now hyperactive and has not slept all night.  I should have left things as they were with my sister visiting today.  I’m paying a small price for my naivety as I try to support a very confused wife this morning.

We appear to be on a Cruise Ship again this morning.  I hope Maureen is not too disappointed when we dock at Grimsby:  we couldn’t possibly pull into Cleethorpes with the tide going out!

 

Dementia: It’s Looking Good!

Mixed Dementia

Image result for It's Looking Good Picture

Everyone who has seen it is impressed with our Sun Room: it has the wow factor.  I will post photographs later in the week.  When Our Key Worker visited yesterday he was very impressed with the facilities we now have at our disposal.

This morning a Risk Assessment will be undertaken by Occupational Therapy to ensure Maureen’s safety in our reconfigured home,  They will also give advice on the best use of the space we now have at our disposal.

Focus Adult Social Care will then need to review our Care Plans.

 

Its the job, stupid

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A very forthright perspective from George Rook which deserves to be shared widely.

georgerook51's avatargeorge rook

Does dementia matter?

I am increasingly annoyed about why the majority of clinical staff do not see that caring for dementia is part of the job.

It’s as if… no, it really is that they are trained and developed during their working lives to do the traditional physical clinical work. To deal with the diseases and trauma they see every day.

So, pneumonia, cancer, prostatitis, back pain, arthritis, and everything else…these are what nurses, therapists and doctors do. They diagnose, treat, discharge.

And they’re really good at this. They’re professionals.

And they know and recognise that many patients have more than one condition. Multiple co-morbidities.

So for example, they’ll check blood pressure, diabetes, heart disease, and make sure the interdependencies and drug effects don’t conflict.

They’ll check that my eGFR is high enough to allow me to have an angina drug which might damage my kidney.

But it seems that…

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Dementia: Coaching Needed!

Mixed Dementia, ,

 

Image result for Coach needed PictureA frequent lack of cognition, paranoia, hallucinations, and anger are now constant features of Maureen’s presentation.  Last night was a belter.  The old chestnut of finding the toilet and how to use it reappeared.  This was followed by a diatribe on my misdemeanors and shortcomings.  Then comfort was sought as I slept in the spare room as Maureen believed ‘the girls were gassing her as they didn’t like her’.  A  short while afterward I was forcefully told ‘I was not doing’my job’ as I encouraged her to get her own drink of water.

Maureen’s presentation is seen as par for the course for mixed dementia so a Care Coordinator is not needed.  Yet Trazodone has been prescribed ‘to make my life easier’.  Following my reluctance to administer, a planned admission to an Acute Mental Health Unit – the Konar Suite – was on the cards.   Now that is not seen as the way forward we are left with the Best Interest Meeting on Maureen’s future care and accommodation in four weeks time.

Our Key Worker is visiting this afternoon and I will ask him to clarify who is responsible for coaching me on how to resolve the recurrent ongoing challenges.  A meeting in four weeks time may be helpful to those who are concerned with the Mental Capacity Act but I need mentorship now!

Someone who doesn’t need coaching is a new carer we had yesterday:  she was excellent from the time she took Maureen’s arm when she met us on the street.  Maureen fell asleep shortly after she was nursed home and new Gir Saturday/ Sunday helped me to mop up from the flood that Maureen had caused by leaving the tap on with the plug in a sink.  Just another occasion when I’m wise after the event: plugs and sinks don’t mix when dementia is around!

Dementia: The Only Protection Is Dharma

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Today’s Buddhist lesson is about protecting the mind:

I need some protection from the night-time routine as it was a problem again last night.  My painful shoulder was a reminder to proceed with caution so I backed off and took to the spare room.  Unfortunately, this did not help as ‘I was ignoring the fact that the children had nowhere to sleep’ and this heightened Maureen’s vitriol.   I managed a short sleep before being woken by someone knocking on the partition wall.   As I tentatively opened the door to the next room Maureen rushed into my arms.

It took me a while to reassure Maureen that she was safe from ‘foreigners who were trying to get her’.  They had been at the concert last night and had cornered her in the bedroom.  It didn’t take me long to grasp the source of her confusion.

I had left Maureen watching YouTube for over an hour in the evening as I searched for my missing house keys.  She seemed perfectly happy singing beautifully to all sorts of numbers: even in German and French as Andre Reui took his Strauss Orchestra around Europe.  That is why foreigners were dominating her thinking and had consequently become her adversaries.

I need to take advice on how to avoid the trials and tribulations of the last two nights.  This journey is so much easier on the body and mind when we sleep well together!

Dementia: ‘Handle With Care’

Mixed Dementia, ,

This has to be the song of the week:

  • There are some lovely shots of Tom Petty who died this week.
  • My late wife would have been 71 yesterday and she loved Roy Orbison.
  • Rob my brother in law ‘has backed’  Geoff Lynne.
  • Bob Dylan is ‘the man’ as far as my Buddist friend Ed is concerned.
  • George Harrison was always my favourite Beatle.

Maureen certainly wasn’t handled with care the last time she went to an Assessment Centre at Ladysmith Road Care Home.  When I visited her on her 77th birthday she had a black eye, a cut nose and a bruised back.  They said she had fallen out of bed – I don’t believe them!  That is why I had reservations about a planned admission into the Konar Suite.  It is the Acute Mental Health Unit for the over 65: hardly the place for someone of Maureen’s disposition. Thankfully, a good night’s sleep brought me to my senses!

I got it seriously wrong last night by trying to negotiate my way into bed beside Maureen.  She launched a verbal attack as I tried to persuade her I was her husband and fearing a lunge I recoiled and have pulled something in my right shoulder.  This is a painful reminder that if I don’t handle Maureen with care then I’ll pay the price: a fear of being attacked by men remains.  How sad that such painful memories will continue to haunt Maureen because her emotional memory will remain firmly intact!

 

Dementia: Listening To Carers

Mixed Dementia

Image result for Supporting Carers North East Lincs Picture

Services in North East Lincolnshire always aim to support carers.  Both Focus Adult Social Care and NAViGO have heeded my plea.

When staff from NAViGO told me on Wednesday that Maureen was going to have a planned admission to the Konar Suite I was over the moon.  I was pleased that I would be out of the firing line for a while and someone else could be on the receiving end of Mrs. Dementia.  However, my thoughts were based on a classic mistake – which my Key Worker is always warning me about – ‘never make a decision when you are exhausted’.  After a good night’s rest, I saw things rather differently.

It has been reassuring that my change of heart has listened to and a bed in the Konar Suite is no longer seen as the way forward: Maureen needs time to let the dust settle after living on a building site for far too long.

 We are fortunate that we live in an area where carers opinions are taken seriously!