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: Transformed by Bocelli and Brightman

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Maureen was really upset when she woke this morning.  She was very concerned that ‘the lady she had been looking after was cold’ and was hunting around for extra bedding.  At first, I thought she was talking about her mum but then she clarified it was ‘one of the ladies’.  It took me a while to persuade her that there was no one else here and perhaps she had been dreaming.  Then a stroke of luck via YouTube led to a positive change in her presentation.

I had heard this song for the first time earlier in the morning:

When I called it up again for Maureen she was transfixed and we spent over an hour listening to Andrea and all the beautiful ladies who accompany him.  What a medium music is at any time of the day here!

Dementia: An Early Morning Tornado

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I was taken by surprise at 5.30 am when the tornado struck with Mrs Dementia blazing with all barrels.  My instructions were quite clear: ‘to get my things out of her room’.  Along with her husband, she had paid for the front bedroom and I had no right to put my things in there.

The storm had been brewing throughout the night with several incidents.  At first, Maureen was accusing fellow resident of stealing her clothes, a couple of hours later she became very concerned that ‘she would be in trouble for waking me’.  Fortunately, I am finding a short period of meditation helps me to drop off again after such incidents.

It is not helping that the pain in my legs and shoulders necessitates having a bed to myself at the moment.  Having your husband in a separate room is clearly not helping Maureen when she wakes up from fitful slumbers.  I’m hoping that we will be back together soon as my session in the Spa and Sauna yesterday seems to have eased things considerably.

With the tornado in full flow, I took shelter: there’s only one thing to do when Mrs Dementia is in full-flow.  Any challenge will only make things worse, even an aside that I needed a shower led to: ‘see if you can drown yourself when you are in there’.

My forecast for later is cold, with occasional showers that could become a storm if I don’t accept Maureen’s reality.  It is fortunate that Girl Wednesday Night is also available on Friday this week: if sleep interruption continues then there is a ready-made solution a phone call away.

Dementia: Five Hours of Fascination

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Maureen has just treated me to five hours of fascination.  She woke shortly after midnight after dozing from early evening.  At first, she was rather hostile towards me until she warmed and shared her thoughts on how she sees things.

She is still puzzled why I’m hobbling around despite accompanying me to the hospital for physiotherapy on Friday.  Nevertheless, she made an astute comment which has been very helpful in my attempt to reduce my pain.  She said ‘the man has made you worse’ and she is probably right.  When the physio attempted to diagnose the problem with my legs he may well have created the back pain that is a major concern at the moment.  I’m hoping that ice packs will reduce the pain in my back sufficiently for me to be able to follow an exercise regime that will free of my tight hip flexors.

Maureen enthralled me once again this morning with her long-term memory.  Her recollection of her childhood is exceptional and puts me to shame.  I often refer her to our whiteboard list of her mother’s nine siblings to get her talking about the good old days.  She moves between her aunties and uncles with ease sharing details of their offspring and interesting lives.

As always we resorted to YouTube to keep the ‘party going’ this morning singing along to some old favourites and calling up one or two new ones to our playlist.  Mid-session Maureen started singing ‘Busy Doing Nothing’: possibly a reflection on the lack of visitors at the moment.  I scanned YouTube and found this version which we both found rather amusing:

Maureen went back to bed a short while ago.  I’m going to see if a hot shower will ease this pain in my back.  If it helps I will follow it up with a session in the Sauna and Spa when Girl every other Sunday arrives at noon.

Dementia: Another Great Carer On Board

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Image result for A great Carer PictureGirl every other Saturday is here again for her second visit.  She is another excellent addition to our team of carers.  I was so pleased when she knocked at the door as I am in considerable pain today in my shoulders, legs, and back.  Such an arthritic attack happens occasionally and needs careful management to send it on its way as soon as possible.

Maureen seems a little worried that her fun-loving husband is a rather subdued today. Initially, she thought it was something she had done to upset me.  Therefore,  I need to do my best to be upbeat and hope that dietary changes along with paracetamol will soon put a smile back on my face.

Our Care Agencies have been really supportive this week ensuring continuity even when they are stretched to fill all their calls.  We really appreciate them going the extra mile to ease our path on this unforgiving journey.

Dementia: Compassion and Fear

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On Wednesday I received the sad news that a neighbour had passed away.  I delayed telling Maureen the news until the next day, as I feared it would cause a certain amount of distress.  Once again I was wrong as Maureen remembered with fondness an elderly lady across the road who had scolded her for being out by herself.  She still tells the story of an 86 year old woman with dementia, running down the road to bring her back home to me.  Later in the day, she showed great compassion to the grandson of the deceased when I invited him to our house to share our sadness over his loss.

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During the afternoon Maureen was again in a compassionate mode as she tried to console me over the pain I was experiencing in my legs.  Once I shared the news that a medical opinion was needed, to seek advice over my restricted movement in both legs, her concern was palpable.  Unfortunately, she got the wrong end of the stick and it took me a while to understand how her compassion turned to fear.  It was only when she shared that perhaps she would need someone to come and stay with her that I grasped the significance of her concern.

I think Maureen believed that a stay in hospital would follow my visit to seek physiotherapy treatment this morning.  She shared that she had mistakenly been thinking that her deceased daughter would come up and stay with her in my absence.  Her thoughts are quite understandable as I will be returning to the hospital where I had both hips replaced.

Maureen is in a state of panic this morning with the prospect of my early morning visit to the hospital looming.  Her initial concerns have been about us being on time.  Now she is worried that she doesn’t know what to wear; alongside a thought: ‘if she doesn’t know how to dress they won’t let her go home’.  It’s clearly one of those occasions when I should have said nothing and gone for my hospital appointment alone!

I realise that most of the time I’m guessing how Maureen might be seeing things.  I must confess I have no idea why a publication that the Care Coordinator left for her consideration was first placed behind the sofa and then wrapped in a fleece.  My guess is because it was from the Alzheimer’s Society but I will never know.  What I do know is that Maureen is still a compassionate woman who is often frightened by her reality and attempting to minimise her distress remains my priority: not causing it – as I have clearly done at the moment!

 

Dementia: Positive Changes

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I have made some significant changes in my approach to being Maureen’s Care Partner:

  • I’m no longer going to make my escape as soon as carers arrive on our doorstep.  Our ‘Girls’ as Maureen calls them need to be seen as part of the family.
  • I have reduced the time I spend on Social. Media significantly
  • I  have used YouTube for early morning meditation:
  • I have returned to in-house Tai Chi using this routine:
  • I am using the local Branch of the Alzheimer’s Society for support.
  • Girl Wednesday Night has now been recruited into our extended family.

It is crucial to keep my role under review as we continue on this challenging journey.

Who’s afraid of Virginia Woolf? Or Dorothy for that matter

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This post by George Rook cannot wait until tomorrow: who are the experts is so pertinent to our journey!

georgerook51's avatargeorge rook

VReflections on patient-NHS partnership working

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I’ve been to a workshop today to talk about revolutionising (or do I mean achieving?) real patient-staff partnership working in the NHS. Oh it was so refreshing and energising to be in a room full of people who get it, and who work hard to do it.

I like this name – partnership. In fact let’s go a step further…equal partnership.

For who is the expert? The patient/carer or the doctor, nurse, manager, director?

Who knows most? Who has the right skills? Who has the loved experience? Who has felt what illness feels like?

Well of course no one is an expert and everyone is an expert.

And who has the power in these relationships?

And who wants to retain the power in these relationships?

Several people today talked about reminding themselves when they walk into a meeting with a doctor that it should be…

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Dementia: ‘It Is Worth It!’

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Maureen was complaining this morning that ‘leaded windows make this place seem like a prison’.  When I suggested that we could change them she said ‘it was not worth it’.  Her comment led me to think what is worth trying to change on this hazardous journey?  Many argue that dementia is a progressive condition and decline is inevitable: others see that as a negative approach which Kate Swaffer has termed Prescribed Disengagement.

Anyone who follows this blog will know where my money is and will have read my feelings about Prescribed Disengagement.  Perhaps there is little point in having clear glass in our windows but it is worth trying to move some things forward:

  • I realise that ‘wanting to go home’ is likely to feature in Maureen’s dialogue day after day so I’m going to give this approach a go for a while:
  • After 25 years together I’m trying to learn more about Maureen’s extended family – her mum was one of ten.  The search is on for photographs of Maureen’s relations and hearing her talk about her family is fascinating.
  • Today’s planned expedition to Nottingham has been postponed and our chauffeur has been stood down.  Maureen is far too confused to take her away from the home base at the moment.
  • I hope to make Wednesday night a fixed feast for an overnight sit as soon as professional staff and the relevant Care Agency are open for business this morning.
  • I need to seek medical advice over tightness in my shoulders and legs with a return to Tai Chi imminent.
  • To have a chat with Girl Monday this morning about how Maureen has been over the weekend and adjust our approach accordingly.

It is worth it to progress the above irrespective of how you view dementia.

Dementia: No Room At The Inn

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We had a stroke of luck on Friday morning when there was no room at the Inn.  A nearby Care Home determined that they would be unable to take Maureen for Day Care or Respite as they felt they were unable to meet her needs.  ‘Houdini’ (AKA Maureen) had already escaped from them once and also found her way into an unsupervised area of the building on another occasion. The Care Home concerned already had three escapologists in permanent care and they decided that taking another one would stretch them beyond safe limits.

The Inn being full turned out to be a blessing in disguise as Girl Friday Night played a blinder and opened up a new range of possibilities for care in the home.  The restful night that followed led to a lovely day where Maureen could only be described as AMAZING:  I hope my cyber friend Susan Macaulay won’t mind me borrowing her nickname!

Our first call in the morning was  Freeman Street Market where Maureen played a significant part in our choice of provisions.

When we moved on to Aldi she looked around for things that we really needed to compliment meals for the forthcoming week.

Later in the morning, she reminded me that we had forgotten to replace her toothbrush so we visited our local pharmacy to make the necessary purchase.

Throughout the morning we experienced Caring Cleethorpes at its best:

  • Stall holders at the Market know Maureen and go more than the extra mile to support her.
  • Staff in Aldi soon warmed to someone who takes a little longer at the till than most customers.
  • Our friends at Lloyds Pharmacy were exceptional as always.
  • Then the icing on the cake when  Girl Saturday arrived and picked up on Maureen’s high spirits to play her part in a lovely morning.

How fortunate that there was no room at the Inn and Maureen escaped ‘being put on a train again’ as she described her last visit to the Care Home concerned.  The Inn also let me off the hook as I had promised Maureen that we stand together in this: no more single tickets for our journey!

 

 

Dementia: A Star Appears

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Image result for A Star Appears PictureI know it’s a little late for this analogy but a star has appeared in our sky of carer support. Girl Friday Night arrived at 10 pm she will be going home at 7 am.  Maureen and I have the sleep that you can only dream of when you are exhausted.  You move quickly in these situations and I will be seeking for our newbie to be a regular Girl Wednesday Night and  Girl Friday Night every other week -she’s up for it.

Once again I have to praise our social worker for the speed of his action in adding Girl Friday Night to our Team.  He had the newbie available as soon as he called here yesterday afternoon.  Maureen really likes our Key Worker and was keen to show him that she had been sleeping in a drawer in the bedroom for the last few nights. On his advice, we managed to get one of our by one of our GP’s to rule out infection as a cause of her confusion and distress.

Refreshed from a good night’s rest we hope to be in Freeman Street Market early doors.  We both have a new found energy in our step this morning after what feels like a life-saving rest but I know that with dementia one swallow never makes a Spring!