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: Let Them Eat Cake!

Mixed Dementia

Image result for Let Them Eat Cake picture

Afternoon tea was taken again yesterday.  Scones with strawberry jam and cream were followed by Bakewell Tart.  This new routine is part of a cunning plan to entice neighbours into our home.  Aunty Clarice has already accepted her invitation.

I’m sure it won’t take long before our invitations are reciprocated and we are popping across the road to have tea with a friendly widow or two.  That is when the real fun will start as they are sure to offer homemade produce.

The ‘Cleethorpes Bake Off’ is within our grasp and if Maureen thinks I’m going to be a ‘Lone Baker’ she has another think coming.  I wonder how long it will take me to learn how to make her signature ‘Cut and Come Again Cake’.   What a delicious way to attempt reminiscence therapy!

 

Dementia: ‘Happy Meal’ Saves The Day

Mixed Dementia,

When I returned from Cleethorpes Leisure Centre yesterday it soon became things were not good.  Hostility was in the air and I made it worse by stupidly suggesting that I took our grandson to see a neighbour’s dog.   This gave Maureen a further opportunity to vent: her husband wanted to leave her for a pet!

Fortunately, our daughter in law played a trump card by taking her two children out for a walk.  This gave me and Maureen’s son an opportunity to cool things down.  He told me how Maureen had spent the last hour convinced she was in the hospital awaiting treatment and their distraction techniques had not changed her reality.

The ‘Sound of Music’ in our sunroom set the tone for a change of presentation.  I didn’t manage to get Maureen to move into her normal dance routines but following a hug from her son and a cup of tea we moved on to join the rest of his family at McDonald’s.

A Chocolate McFlurrie saved the day and two grandchildren saw moments of the Nana they know and love.

 

Dementia: Stop Worrying, Start Living

Mixed Dementia

Today’s Buddhist teaching is once again from Dekyong :

As well as trying to deal with my mind I’m also taking steps to resolve issues with my body.  My physiotherapist has now prescribed a series of exercises to address restricted movement in my shoulders and legs.

There is little doubt that bilateral hip replacement has reduced the chronic pain that I used to experience.  What I hadn’t  understood is that is new hip joints are not the end of the story.  If I want to make the best of the Surgeon’s work I need to exercise to maintain muscle mass and flexibility.

My shoulder problems are explained by physiotherapists as ‘white hair rotator tear’.  Unfortunately, I have the credentials on both fronts and an operation for someone of my age is not guaranteed to work.

Buddhist assert they are not their body: little consolation when pain is keeping you awake at night.  When I was last at Madhyamaka my good friend Kelsang Dorde

Image result for Kelsang Dorde picturetaught me a simple breathing meditation that helps me get back to sleep when I’m woken in the early hours – yet another ‘no-brainer’  from the man!

Dementia: Whatever Happened To Positive Risk Taking?

Mixed Dementia,

 

Image result for positive risk taking in dementia pictures

The Local Authority has made an application to the Court of Protection to allow me to deprive Maureen of her liberty.  I guess if I don’t complete the requisite paperwork they will claim she is no longer safe in my hands and lock her away in a Care Home.

I am as keen as anyone else that Maureen is safe.  However, I wonder what has happened to the idea of positive risk-taking?

Maureen’s presentation fluctuates and on good days she is as sharp as a tack.  If she begins to see me as her goaler that is yet another nail in the coffin of our relationship!

I also do not accept that the local community is a dangerous place: quite the opposite.  Our neighbourhood is full of people who look out for Maureen and many kind souls have brought her back home when she has asked for help.

I’m sure that there could be another way.  New technology offers all sorts of options to keep Maureen safe in the community.  IMHO having the right to deprive Maureen of her liberty is a retrograde step on the path to Kate Swaffer’s Prescribed Disengagement!

Dementia: Taking My Time Off

Mixed Dementia,

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One of my mistakes during 2017 was not taking my time off.  There were many occasions when I chose to stay around during Carer Sits: especially when our Sun Room was being built.  I made a similar mistake on Christmas Day and Boxing Day when I thought it would be better to have the day to ourselves: what a bloomer!

Yesterday carers were here from 10am until 4pm and I took full advantage of their presence.  Maureen has no concept of time and didn’t appear to notice any difference.

When I met our Key Worker yesterday I asked him to build one six-hour sit into our Support Package. This arrangement will be on Mondays from now on – subject to the availability of staff.  A six-hour break will mean that I can have a relaxing time, rather than rushing around to make sure you I’m back to relieve carers.  I have also asked him to put an additional Carer Sit in place on Wednesday evening so I can attend local Buddhist Meditation Classes.

A week on Monday Maureen will go into Alderlea Care Home for two weeks.  Now I have ‘sussed’ the place out I will not visit during that time and take a complete break from my caring role.  I have already arranged a Buddhist Retreat for the first week and will catch up with family and friends later on.

It has taken me quite some time to accept that Carer Sits are my time. and from now on I’m out the door almost as soon as they arrive.  This is my plan on Sunday and I will not be here to see visiting family members until our carer goes at the end of her shift.

I have edited my About page to reflect my mission to share positives on this Blog from now on.  Every day, Maureen amazes me with her intellect and how she attempts to deal with the consequences of severe dementia.  One of our mantras has always been to accentuate the positives.  Why change habits of a lifetime just because dementia is in our lives?

Dementia: Music Not Medication!

Mixed Dementia,

I had to resort to an early morning session of YouTube this morning when Maureen was beside herself with fear.  I chose the music carefully and only put on our beloved Songbird Granddaughter once Maureen had downed copious amounts of tea.  From what I have just heard the immediate fears of the morning are over: Maureen has found her way to the bathroom and can remember what to do again!

I’m going to be opportunistic this morning as I try to help Maureen rebuild her self-belief.  I have asked her to accompany me to my physiotherapy appointment. This will give me an opportunity to coax her into her nurturing mode and nag me to do the prescribed exercises to regain flexibility in my legs and shoulders.

Maureen and I rarely see medication as the solution to our aging bodies and tired minds.  Music continues to play an important part in our lives:  if I could coax her into calling in to see our dancing friends at the Church Hall on our way home I would really be cooking on gas this morning!

Updaate at 7.20am:  Taking Maureen to the Church  Hall is far too risky.  I often believe that others are overstimulating her and was about to stray down the same path.  Why would anyone in their right mind take her into two situations that have the capacity to distress her in one morning?

 

Dementia: Sharing The Good Times

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When I look back at my Blog over 2017 I have often shared those occasions when I have been struggling: when Mrs. Dementia has been in full flow.

That is only one side of the story and one of my Resolutions for 2018, is, to share the good times:

Maureen isn’t just my ‘Dancing Queen’; she is also my ‘Singer Lady’:

Happy New Year

Dementia: Transforming Our Lives

Mixed Dementia

 

HOW TO TRANSFORM YOUR LIFE – A BLISSFUL JOURNEY

How to Transform Your Life – A Blissful Journey

BY VENERABLE GESHE KELSANG GYATSO

In the introduction to How to Transform Your Life, the author, Venerable Geshe Kelsang Gyatso, says:

‘Through practising the instructions presented in this book we can transform our life from a state of misery into one of pure and everlasting happiness.’

I have downloaded the free EBook and signed up for the retreat at the Buddhist Centre in Pocklington in two weeks time.

Yesterday I mentioned how increased carer support can transform our lives.  Today  I’m hoping to transform my approach to the unknown.  Six family members will be arriving shortly: rather than focus on the prospect of overstimulation for Maureen I’m going to welcome our visitors with open arms.  I’m hoping to catch many of today’s ‘Magic Moments’ on camera.  Maureen is often fixated on: ‘nobody likes me’ and photographic reminders of the love of her family might just transform her thinking on that front!

I hope between us we transform the approach to dementia in 2018.  Happy New Year.

 

 

 

Dementia: ‘You Need More Help Than That!’

Mixed Dementia, , ,

 

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Sometimes it takes a complete stranger to confront you with the shortcomings of your situation.  When I told a nurse at Grimsby Hospital yesterday morning about the level of carer support that we receive she said: ‘you need more than that.’

Maureen had been taken to the hospital early yesterday morning because of pain in her abdomen.  At first, she was cooperative as she remembered her discomfort. Once the pain receded she couldn’t understand why she was being examined.  She concluded that it was my well-being that was under the spotlight and began to challenge staff as they attempted to diagnose the source of her pain.  Things became really difficult when she was told that she was free to go home.

It took myself and two nurses almost half an hour to persuade Maureen to leave the hospital and get into our car,  During that time she was physically aggressive and verbally hostile to anyone who tried to help her.

Next week provides an opportunity to explore how additional carer support goes down with Maureen.  Carers will be here for 6 hours on Tuesday and Thursday as some unused hours from Christmas and Boxing Day are reallocated.

On the 15th of January Maureen will be going into Alderlea Care Home for two weeks.  We have decided that a two-week Resite Break gives her a better chance to settle in new surroundings and me an opportunity to recover from four weeks of being on very long shifts.

Being a Care Partner is the most difficult job I have ever had in my life and I’ve had some tough ones.  It is important that the level of carer support reflects the demands of the role and is increased as things become more challenging.

The nurse who had saw Maureen in action yesterday is right.  Our current Support Package is inadequate.  It has not kept pace with changes in Maureen’s diagnosis: one of my resolutions for 2018 is to put that right!