All posts by It's My Time Now

Unknown's avatar

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: The Only Protection Is Dharma

Uncategorized

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!

Dementia: Waiting For A Bed

Mixed Dementia

Image result for Konar Suite Grimsby

Maureen is waiting for a bed on the Konar Suite – a specialist unit for dementia.  Consultants have decided to review her diagnosis and monitor her presentation.  They are hoping a bed might become available before the weekend.

The above news came late afternoon, so when Maureen finally lay on the sofa I took the opportunity of taking rest.  I slept on and off until 10 ‘o’clock, an hour before a night-sitter arrived for her eight-hour shift.  When she rang our doorbell I was pleased to see a familiar face who had helped us out on a previous occasion.

Night sits will become a permanent feature of our Care Plan – I have listened to our Key Worker at last!.  We have decided to start with Wednesday’s and move on from there.

At 4 am I was woken by a deafening scream from downstairs: Maureen was scared to find a stranger in the house.  It took a while to settle things down and reassure her she was in safe hands.

Following an early morning conversation with the Konar Suite, I have agreed to monitor how much food and drink Maureen is having.  She has only sipped her first drink of the day after under-consuming yesterday.

I feel rejuvenated this morning following more sleep than I have had for weeks.  I’m also reassured that a complete appraisal of Maureen’s condition is imminent.  Once again, I’m very grateful for the services that are available in North East Lincolnshire – the Konar Suite is a rare commodity.

 

Dementia: I Did It Roy!

Mixed Dementia,

Image result for roy lilley picture

In his Newsletter yesterday Roy Lilley encouraged us all to say thank you to nurses.

There are four nurses who I have already thanked for their support in the last 24 hours:

Firstly, a Practice Nurse at Clee Medical Centre who confirmed I had a viral infection.

Secondly, a Nurse from the Konar Suite who gave me advice during the day on how to manage Maureen’s presentation.

Thirdly, my Admiral Nurse who has been nominated as my first line of contact. on all matters.

Finally, another Nurse and a Support Worker from the Konar Suite who made a home visit in the early hours and have provided ongoing coaching via telephone.

It is reassuring that I have nurses available for support 24/7 to enable me to continue to care for Maureen at home.  Unfortunately, despite lorazepam, it has been another sleepless night and I’m rather tired.

I have been assured that Maureen will be assessed this morning.  She appears to lack any semblance of cognition: struggling to understand basic interactions.  The times when she doesn’t recognise who I am are becoming more frequent.  She is currently chattering to imaginary family members and young children about events that have some resonance.

 I’m extremely concerned and wonder what will be the next steps on this journey?

Dementia: Diagnosis Needed

Mixed Dementia, ,

Posted at 4 am:

 

Image result for Type of Dementia Picture

 

Maureen needs to be seen by her GP this morning after another dreadful night.

She had just laid down on the sofa after ‘being on a boat’ for the last five hours.

She is awake now: looking for her mum and frightened about being left on her own

I am asking the GP’s advice on how to manage her current presentation.

I am also formally requesting a review of her diagnosis .

Is her dementia predominantly vascular, Alzheimer’s or something else?

A Best Interest Meeting in a month’s time is no help to me in the middle of the night.

We also both need to know if our coughs and colds are anything more sinister!

Dementia: Good News Week

Mixed Dementia, , ,

Image result for Good News Week PictureTwo really good things happened last week.  Firstly, our longest serving carer had a little girl: we understand mother and child are well.  Secondly, her replacement managed to wash Maureen’s hair and give her a full body wash.  It looks like the ‘new kid on the block’ is now Maureen’s hairdresser.  Consequently, I have withdrawn from today’s Teepa Snow Webinar on Bathing Issues as personal care needs to be in the safe hands of ‘the ladies’.  My focus needs to be on the completion of our renovations and securing adequate coaching.

The  good news for the forthcoming week is that our decorator will be on site today and a joiner later in the week.  I would estimate that we are still a couple of weeks away from completion; with further plumbing and electrical work pending.

There is still uncertainty over the coaching I’m legitimately entitled to as Maureen’s Care Partner and whether Maureen should have a Care Coordinator.  Clarification on these issues may not take place until the Best Interest Meeting on the 3rd of November.   In the mean time my Admiral Nurse is doing her best to fill in the gaps in available support.

Maureen is still struglling with her upper underwear and trying all sorts of permutations for support.  I’m hoping that Girl Monday will be able to help her with this today and she will gain some respite from the attendant distress.  I summoned help on that front last night but by the time night carers arrived Maureen had dropped off.

We had another ‘visitor’ during the early hours when Maureen believed her mum was  beside her on the sofa.  She seemed to gain great comfort from believing her mum was close at hand: some hallucinations have a positive impact!

There is some bad news this morning: my infection is not letting up; my nose is dripping like a tap,  I have a persistent cough along with discomfort in my chest, and my legs feel like jelly.  I have already messaged our Key Worker that additional support may be needed if I am to keep Maureen safe and sound over the next few days.

 

Dementia: Controlling Our Mind

Mixed Dementia

I share Buddhist teachings on Sunday’s.

The following lesson seems particularly relevant to Care Partners:

 

Maureen struggled with her clothing yesterday; particularly her underwear.  She kept hoisting her trousers up towards her bust and at one time tried a belt for even higher  support,  I’m hoping Girl Sunday might be able to give some helpful direction when she arrives at noon.

Despite a diagnosis of severe dementia there are times when Maureen’s intelligence and intellect shine through.  I had to smile when I put Strictly Come Dancing on last night when Maureen said: ‘the ladies are making fools of themselves by revealing so much flesh and the dancing isn’t much good either’.  This was my cue to switch over to YouTube to spend another evening watching our current favourite in action!

Dementia: ‘You’ll Never Walk Alone’

Mixed Dementia,

There is no doubt who is the musician of the week.

We have called up Andre on YouTube on most evenings .

Maureen waves at the screen and applauds every number.

‘You’ll Never Walk Alone’ is my approach to our journey:

 

Dementia: CHC Is The Answer!

Mixed Dementia,

Image result for Continuing Health Care is the Answer Picture

If ever I needed it the evidence that Maureen needed CHC  it was before my very eyes and ears in bucket fulls yesterday.  In the morning the singing and laughter from Maureen and Girl Thursday Morning almost drowned out the noise from our plumbers.  I went out in the afternoon and  Girl Thursday Afternoon told me ‘we’ve been singing and baking’ – I sampled the fairy cakes as soon as I got the chance.

My brother is on Continuing Health Care in a Nursing Home: supposedly one to one support to meet his needs.  He is well cared for and it is clear there is lots of TLC on offer for ‘Our Kid’.  He lives in a busy place where the demands on carers consistently outstrip their ability to meet the needs of the residents.

Maureen is on what I would call Continuing Home Care.  Her visits to Care Homes have not gone well and the care has hardly been person-centred.  This is no cricism – how on earth could they get to know her when she is only with them for a short while?  How could anyone expect carers to prioritise the occasional visitor when their regulars provide their bread and butter?

The building work to make this Care Home fit for purpose is slowly drawing to a close.  Three months is a long time for anyone to have workmen on site.  It isn’t surprising that Maureen hasn’t occasionally wanted to run away from being ‘upside down’ as they say around here.  There have been times when I have doubted the wisdom of living in turmoil; not knowing how long power or water will be off or scaffolding will be in situ.  However, when I remind myself of the hilarity coming from our lounge or the sweetness of the fairy cakes: no gain without pain comes to mind.

What I’m now hoping is that those who live by Mental Capcity Act will review their approach.  We will always be renegades – wanting to explore new territory.  We will never accept that prescribed Care Pathways are always solutions for those who are living with dementia.

Our journey is just that: trying to fit us into the ways that others want us to go is not going to work  and can never be in Maureen’s Best Interest!

I believe I have made some progress to deal with the frustrations I expressed yesterday.  Unfortunately, nothing is cut and dried but I’m optimistic that some things will soon shift in our favour.  What was heartening yesterday;  when I spoke  to Kelsang Dorde about my plan to visit the Madhyamaka Centre  next week he immediately offered to change his teaching to that lunch-time.  A real act of kindness and so typical of this lovely man: a ‘no-brainer’ for him of course!