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: We’re Almost There!

minimising distress, Uncategorized

Image result for We're Nearly There PictureI’m optimistic that within a month there will be some good news to report from this neck of the woods.  Our difficulties have originated from the national approach to vascular dementia: there is no treatment available.  This means you are almost left to find your own way on this hazardous journey; even if your personal history adds a layer of complexity to your route.  It has taken a while but there is now recognition that being cast adrift is hardly a person-centred approach to care in Maureen’s situation.

There are lots of people working behind the scenes to put in place arrangements to provide the support that is needed as we attempt to address the ongoing impact of changes within the structure of Maureen’s brain.  This is taking place at a time of dwindling resources; when there is a  relentless demand for services.  I would like to extend my sincere thanks for the hard work that is going in so many quarters to create a level of support that will attempt to minimise Maureen’s distress and help us all give dementia ‘a run for its money’.

Dementia: Tales of the Unexpected

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On Tuesday as I made my way to meet staff at our local Alzheimer’s Society I got a feeling of déjà vu as I passed a familiar bus stop.  As I stood for a moment I remembered waiting, with my heart in my mouth, to be taken to a Secondary School where I spent many a day.  I recalled those moments of panic wondering what I was letting myself in for to earn my £145 a day.  Would it be one of those days where they would be at me for all five periods or would I manage to find a peaceful haven for the odd twenty minutes?

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As I moved on towards my destination I smiled as I thought of some of the characters from my days as a  Supply Teacher and wondered what they were doing as Christmas loomed.  I also thought how fortunate I was to have been in their company and reflected on what I had learned from the almost inevitable hostilities.  Two things came to mind firstly I could never predict what would happen as soon as I entered the school premises.   In fact, I  rarely knew from one day to the next be which classes or subject I would be expected to teach.  Secondly, what a wonderful training ground Supply Teaching was for a Care Partner dealing with dementia: tales of the unexpected personified.  Unfortunately, there is one significant difference: this is a Labour of Love and there is rarely any time off!

I have managed to squeeze in a few hours of rest in the last 24 hours.  Maureen appears to be sleeping peacefully at the moment.  It was well after midnight before there was any respite from last night’s presentation -possibly driven by the full moon.  I wouldn’t even chance to predict how today will go and I will take the bus this morning to meet our social worker: ‘stealing’ Maureen’s car only fuels the fire of dementia!

Footnote: I won’t be going anywhere this morning as Maureen is begging me not to leave her.  I’m hoping YouTube will lift her spirits and  Lesana and Lea are on as I post.

Dementia: Is It the Full Moon?

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Image result for Full moon and dementia pictureSome say that a full moon causes chaos for those with dementia.  It is a possible explanation for what has happened today.  The other possibility is that having Heating Engineers in the house has upset the apple-cart.  Maureen is currently ‘letting me have it’ downstairs while I keep a check on things via the Baby Monitor.  Today has been one of the most challenging days of this journey.

The story is that I have robbed Maureen of all her belongings and used her wealth to buy this house in Cleethorpes against her will.  Throughout the day my status has changed I’m currently her brother who has been complicit in the shady dealing of that Paul.  I have taken advice from Specialist Dementia Nurses on the Konar Suite and will try to keep her safe; give her space and ensure there is luke-warm tea at hand.  It’s looks like it’s going to be another long night!

Dementia: Time Travelling

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Maureen is time travelling this morning: reliving some unhappy childhood memories.   She is replaying her mother’s disappointment that her father moved the family back to Nottingham from Cleethorpes into a house that she had never seen before.  I have had an hour of ‘why are we here; why didn’t you involve me in choosing this house; why did we move from Coventry?’  It is one of those occasions when nothing I  say can shift her perspective so I have made her cups of tea and I’m now going to leave her to rant to herself.  Hopefully, she will tire shortly so we can both get some further sleep and wake up at a reasonable hour to our lives together in 2016.

There’s no peace from dementia and we are still awake three hours later listening to YouTube.  This one always calms things down:

Maureen  is now singing along with Boney M to this one:

Hope we can catch up on some sleep later!

 

 

Dementia: Moving Forward

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I have never thought it necessary to do your ‘dirty washing in public’, so the detail of yesterday’s meeting with NAViGO needs to remain with those in attendance.  From my perspective, the air has been cleared and lessons have been learned which will be cascaded down within the organisation. It is reassuring that NAViGO has been prepared to listen to my concerns and put their hand up to acknowledge aspects of unprofessional practice. The written reassurances that  I received yesterday evening, lead me to feel optimistic that we will, once again, be treated with respect and person-centred care will resume.

It’s been another challenging night with a beautiful ending.  We began sleeping downstairs with Maureen waking up twice terrified by something or other.  We then moved upstairs in the early hours and eventually shared the marital bed: sleeping beautifully just like the good old days.

Maureen’s early morning concerns are that she might still be able to become pregnant.  Now that would be an immaculate conception that could lead to joint litigation against medics who would have real  problems defending their competence!

Dementia: Bad Dreams and Hallucinations

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Maureen has had a difficult night.  Her dreams have been vivid and frightening.  She has seen and heard things in the room we have been sleeping in that have scared the living daylights out of her.  This is hardly the restful night I needed before this morning’s meeting with Senior Officers of NAViGO.  Just to add to my difficulties my new Wireless Printer has lost its connection so I will need to take my Lap Top to the meeting.

Dementia: A Lovely Memory

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I clearly gave Maureen a lovely memory earlier this morning.  She was sleeping in the chair and stirred as I came into the room and said: ‘it’s GrandDad’ and gave me a kiss on the cheek.  I have often heard her speak so well of her grandparents so this case of mistaken identity didn’t worry me and reminded me of this song:

I remember a West Indian friend of mine once saying: ‘I don’t care what they call me as long as they don’t call me late for dinner’.  As Maureen’s dementia progresses I don’t worry who she thinks I am as long as she feels safe in my company.

Don’t give up

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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

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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’

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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!

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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.