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.

Living with dementia is better than expected…

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I can’t wait to meet Kate Swaffer to personally thank her for helping us to see that a diagnosis of dementia is a new beginning rather than the end.

 

 

Kate Swaffer (she/her) Kaurna Country's avatar

If people would proactively and positively support us to do so, and stop telling us all to go home and prepare to die, via aged care, living with dementia can be far more positive than I ever expected. I was interviewed in Singapore last year when support the Singapore Alzheimer’s Disease Association in an article in the Straits Times which you can read in full here. There are a few very minor errors in content, and having my age of diagnosis noted differently in two places, but overall, it is a really positive, respectful and well written piece. A pleasant change to work with a journalist who wants to write the truth, with no have hidden agendas.

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Dementia: A Moving Song

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Lyrics:

An old faded photograph, is hanging on the wall,
All dressed up, Dad by her side, standing proud and tall,
Now she shuffle’s when she walks, she can’t stand up straight,
Her dinner falling from her spoon, can’t help how her hands shake. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

She loves to tell me stories, often the same one,
The night Dad snuck out from the house, for love about to come,
And finding her there sitting, on the front porch swing,
Handed her a metal washer, as a promise wedding ring. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

I know the news will come, she’s with dad once again,
But I’ll make my weekly visits, sit down reach for her hand,
For there’s nothing I’d prefer to do, on a Tuesday night,
Then hold her hand and listen, to the stories she recites.

There’ll be other faded photographs, young mother’s babes in arms,
Fathers standing by their side, all are safe and warm.
They, too, will have their stories, but if they can’t make the words,
I will read them in their pretty eyes, and they’ll know that I’ve heard. 

Oh her memory’s grown foggy and she’s not sure who I am,
But I come by every Tuesday, just to hold her hand.

For there’s nothing I wish I could do, on this rainy night,
Than to hold her hand and listen, to the stories…
of her life.

SOURCE:

  • Written by Alice Hesselrode and performed by Gregg Steiner

Dementia: Going On Gardening Leave

Mixed Dementia

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It’s a struggle here this morning as nothing seems to be grounding Maureen.  Even music on YouTube has not done the trick!

Her initial concerns were about the wellbeing of her children: she wanted the phone number of their school to let them know she would be unable to pick them up today.  Now she is packing to go home and wanting me to put some of her belongings into the car.  Fortunately, the sun is shining this morning and I am going to try to entice her into helping me tidy up the garden.

Dementia: The Benefits Of Dancing

Mixed Dementia

Maureen has obviously heard about the latest research on the benefits of dancing:

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Our Sun Room often turns into a dance studio as she moves around to The Sound of Music.  The mask is because I just can’t get the hang of pixelating videos.  Unfortunately, it means you can’t see her beautiful smile and the sheer joy on her face.

Dementia: ‘Tell Me About It’

Mixed Dementia

Another excellent communication tip from Teepa Snow:

I always find Teepa’s videos helpful and need to include ‘tell me about it’ in my repertoire!

I’m optimistic that rest will help Maureen and I recover from our ordeal on Wednesday.  We were both extremely tired yesterday and Maureen was frequently distressed that our children were at risk.  She remembered that she had been to hospital but thought it was to deal with her ongoing problems with her left leg and foot.

Dementia: A Real Cause For Concern

Mixed Dementia, ,

 

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There was a period of real concern yesterday when the Emergency Services were disagreeing over their powers under the Mental Capacity Act.  Maureen was clearly vulnerable, cold and at risk of injury from passing traffic yet, the people on the ground felt powerless to direct her into the waiting ambulance.  Fortunately, the staff at my Brother’s Nursing Home came to her rescue and helped her to get the assessment she needed.

This isn’t the first time I have come across problems with getting Maureen to a place of safety when she has been distressed.  On our way to the hospital, our Paramedic outlined how the Emergency Services were often at odds with each other as they try to cope with inadequate resources.

Maureen is very confused this morning convinced that she has two young children to contend with.  She is exhausted after the events of yesterday.

I was naive to think I could solve the problems over the lack of visits from her family by taking her to see them.  She had a lovely time with two of her grandchildren yesterday evening Maureen but woke up  crying this morning because ‘she never sees her family.’

What An Amazing Woman

Mixed Dementia,

Maureen never ceases to amaze me with her resilience in the face of adversity.

She awoke at 2.30am completely lost: terrified that she couldn’t remember anything.

Two hours later, with a cup of tea in hand, she is singing this one:

She is currently getting ready to travel to Coventry as she wants to cheer my mum up.

That wife of mine is simply AMAZING!

A Great Start To The Day

Mixed Dementia

 

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We both got off to a flyer yesterday morning.  As I was shutting the door on my way out I could hear our Carer easing Maureen into the shower.  A short while afterward I was a short distance away sorting out a missing link in our Care Package.

I’m keeping my finger crossed that Ashgrove Care Home will be able to accommodate our needs for scheduled Respite Breaks.  The Manager is willing to book Maureen in for Rolling Respite once she has conducted her assessment.

I’m confident that the new regime at Ashgrove will mean that Maureen is in safe hands.  The staff has clearly worked very hard to ensure that the place is now up to the standards expected by our Clinical Commissioning Group.  Those days when residents could escape or find themselves lost in an unused part of the building – as Maureen did – are long gone.  The other advantages are that all rooms are downstairs and Maureen loves spending time in the internal garden.

Ashgrove is so convenient:  it is a short stroll from where we live.  It will be such a relief to know that Rolling Respite in a safe place is only an assessment away.  How great that it now looks likely  I will be on that plane to Australia in April to catch up with my old school pal and his wife.  Then if I’m really lucky I might even get to meet Kate Swaffer, Dominique K and Leah Bisiani to thank them for their exceptional support.

A Six Hour Break

Mixed Dementia

 

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From today Focus Adult Social Care has agreed to fund 6 hours of additional sits a week.  This means that I will get a 6-hour break (10 until 4) every Monday.  There is also a 3-hour sit in place on Wednesday evening to enable me to attend local Buddhist Meditation Classes.

I need to spend some of my time today looking into alternatives for Respite Breaks.  No Care Home can ever guarantee availability.   I need to have options for those times when Alderlea cannot accommodate Maureen in a downstairs room.