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: Further Tales of the Unexpected

Mixed Dementia, Uncategorized

Image result for Tales of the unexpected pictureI have to smile when people tell me that you have to take things day by day with dementia.  Those who make such statements have never been on duty 24/7 as they would have seen it’s more likely to be hour by hour.  In fact, things can often change within minutes.

I wish I could have videoed Maureen’s joy yesterday evening when we were listening to Bocelli on YouTube.  She had a constant smile on her face and she applauded every number.  When I sensed she was getting tired and switched off the television she became distressed asking when we were going home.  I explained that it was time to clean our teeth before we retired for the night,  accusations about bringing her here against her will followed with all sorts of recriminations. The looks she gave me would have turned any mortal being to stone so I decided to give her space hoping that sleep would have a curative impact on her mood.

This morning my lovely wife is back singing along to YouTube.  She is probably on her third cup of tea of the morning.  I won’t be taken aback in a few minutes if she tells me she is dying of thirst because she hasn’t had a drink since last night: that’s the nature of her condition.

Maureen is keen to go to Freeman Street Market this morning.  I think she remembers our last visit when stallholders were so supportive as she moved around selecting fruit and vegetables.  She also wants to buy me a present for my birthday which is just over a week away.  Being in Grimsby early on a Saturday morning really works for us as we get our shopping done while most people are still in bed.

Dementia: Complimentary Therapy

Mixed Dementia

A couple of hours into another early morning YouTube Party I suddenly thought of an approach to dementia that might be useful: a sort of 2 for 1 deal; music and learning a language.  If we listen to Bocelli with Italian lyrics on the screen then the brain is being stimulated in two ways.

Maureen has always been a better linguist than me so I have a resident tutor on hand.

Addio, amico mio: its ‘Time To Say Goodbye’:

 

Dementia: How To Reduce Accidents

General, Uncategorized

Sensible advice from a G P on YouTube:

This is one of our favourites and always brings a smile to proceedings in the mornings.

Dementia: Talk the Talk and Walk the Walk

Mixed Dementia, Uncategorized,

Image result for walk the walk pictures

I’m often too tired to think straight when it comes to the crunch.  On some days I hardly get any sleep on others the challenges come so thick and fast I don’t know which way to turn.  When Maureen threw out the challenge of being allowed to wander yesterday I immediately ran for the cover of requesting another assessment by Occupational Therapy.  Later in the day after several conversations, a way of preserving Maureen’s independence emerged.

To take a step to release Maureen from her bonds we all need to walk the walk: whenever she wants to go out we accompany her.  The days of restraining her freedom have to be recast as joining her on her right to roam.  This will allow her to fulfill her doctor’s advice to ‘keep on walking’.  When I look back this is a simple solution: rather than calling her back I need to keep my training shoes on and be prepared to step it out whenever my wife beckons.

When I was struggling last week for a ‘one liner’ to address Maureen’s concern about our Wednesday Night Sitter the Local Branch of the  Alzheimer’s Society came to my rescue. They provided sound support again yesterday as did Maureen’s Care Coordinator. From now on we are going to talk to the talk of person-centred support and walk the walk!

Our Care Agency also walked the walk by arranging for Girl Monday to be here today as Girl Wednesday is off sick for the next week.  They understand the need for continuity and pulled out all the stops to get Maureen’s favourite carer here today.

In the evening our Decorator trod an excellent path as he popped in to see us.  It’s fantastic how people call in just when you need (ask) them!  He stuck to our rehearsed script and will return shortly to refresh the kitchen.  Within a few weeks, it will be easier for Maureen to find the downstairs utility room and I wouldn’t be at all surprised if there is sufficient paint left over for our bathroom door to also be painted olive green. While he is working upstairs I’m sure he will suggest that our bedroom door might need refreshing in a suitable colour – I’m sure you follow my drift!

Folk music has been ringing out from YouTube this morning and Maureen is in great voice.  She will be delighted when Girl Monday shows up in a few hours.  I will leave the girls to catch up so that I can progress some important financial business to prepare for what lies ahead on this unforgiving journey.

Dementia: Feel The Fear And Do It Anyway?

Mixed Dementia, ,

Image result for Feel The Fear and do it Anyway PictureAs ‘Girl Monday’ was off sick yesterday I tried something a little different. We needed some basics so Maureen came with me to Aldi where she seemed ill at ease, despite almost skipping around on our last visit.  When we were putting our purchases in the car she said ‘she felt useless; as she was no longer capable of shopping alone’.  She recalled earlier days where she filled up the shopping trolley alongside adding up the cost as she traversed the aisles in supermarkets.

We chatted as we made the homeward journey and I decided on some action as we neared our fishmongers.  I stood outside his shop with tears in my eyes watching Maureen chatting confidently to the owner as she took advantage of today’s Special Offer: ‘Three pounds of haddock for £10’.

During the afternoon Maureen couldn’t settle and frequently came to find me if I was out of sight.  Her shadowing became intense as the evening approached and she often sought a hug telling me how frightened she had become.  We retired at 8 pm as we were both exhausted and during the night she found me after I had moved to the spare room.  She shared her fears that ‘some people had invaded the house and were cutting up clothes’.  At that juncture, she followed me into the bathroom and closed the door behind her at a time I would normally enjoy some privacy.

I shared my concerns about Maureen’s current presentation with certain professional staff yesterday and adjusted some plans accordingly.  Our social worker was on leave and will be aware of my need to speak to him this morning.  Maureen struggled last week with Wednesday’s overnight sit and we will need to review our plans on that front in light of the fear factor.  This may not be one of the occasions to take a leaf out of the advice in the above book but the author may not have been taking dementia into the equation.

I have broken off completing this post to make Maureen a cup of tea.  She has ended up contesting the restrictions on her right to roam.  I accept she has a point and I disagree with the doomsayers that she is not safe when she is out by herself.  This is something I need to explore with others urgently.  Why keep Maureen under lock and key and be seen as the Bad Guy if this is not really necessary?

Footnote: 10.15 am I have just sent Girl Tuesday home she has a dreadful cold and we can’t risk either of us catching her infection.  How on earth carers are being sent out to work with vulnerable clients in that condition defies belief!

Dementia: Thank Goodness It’s Monday

Mixed Dementia, ,

Image result for Thank Goodness It's Monday Picture

This morning I have the opportunity of reviewing how things are going with Girl Monday.  She is our longest serving carer and is used to dealing with the fluctuations in Maureen’s presentation.  However, she has been on holiday for a week and even she may be taken aback by what she sees this morning.

Maureen had a lovely few hours with her son and granddaughter yesterday.  It is possible that we encouraged her to do too much and tiredness could explain the dreadful night that followed.  This morning she has returned to the theme of her memory:  she is either terrified by what she can’t remember or resorting to a reality that would not be shared by anyone else.

As always I have no idea what is behind Maureen’s presentation and when it is opportune I will attempt to rule out any medical issues.   My guess would be that panic is a factor induced by compassionate confrontation from the Care Coordinator, and myself, that denial is not helping Maureen to make the best of her life.

Footnote: Received a phone call at 9.30 am to let us know Girl Monday is ill.  Have advised the Care Agency not to send anyone else as a newbie would add to Maureen’s confusion.

Dementia: ‘God Is Watching Us’

Mixed Dementia, ,

It’s fortunate that family will be arriving shortly as I could do with a helping hand or two.  I’m being outrun this morning with Maureen being as confused as I have ever seen her.  She woke at 2.30 singing ‘God watching us’ at the top of her voice.  I soon realised where that had come from:

However, I declined another early morning YouTube party and encouraged Maureen to go back to bed: I’m getting too old for these raves.  She managed to drop off again but I had no suck luck so I carried out an early morning Spring Clean – it was surprising what I found stashed away in the most unlikely places.

I can’t seem to settle her today, she is either ‘packing to go home’ or sitting in an armchair looking distressed.  Perhaps, she will drop off on the sofa a little later and wake up in a different mode.  I was hoping to get out when our visitors arrive but I fear that may only add to her confused state.

Dementia: Happy Reminiscing

Mixed Dementia

Image result for Happy Reminiscing Picture

Maureen and I spent a lovely couple of hours yesterday evening talking about her childhood.  It is possible after 25 years together I have grasped a little more of her early years.  I sat back in amazement as she told me stories of how her parents moved about during the Second World War to share their lives with other family members.  We also phoned her brother who helped to fill in some of the gaps and share such lovely stories of their childhood.

I’ve been up early this morning remembering aspects of my own childhood as it is the 8th anniversary of my father’s death.  I have even found another version of My Old Man which I have posted on my Good Music Page.

There is little doubt that Maureen’s long-term memory is much better than mine.  She can recall events from her childhood as if they happened yesterday, where I have few clear memories of my early years.  I have written down the sequence of Maureen’s early life to help me recall the comings and goings of her family as they tried to support each other, and stay safe, during the heavy bombing of Nottingham.  When the going is good I’m hoping that we can find some photographs of Maureen’s early years to add a little more detail to the story and make significant events easier for me to remember!

Dementia: The Stark Reality

General, Uncategorized, ,

Image result for vascular dementia pictures for free

The joy of Wednesday morning has been replaced with a couple of days of stark reality.  Just as I thought I’d got vascular dementia in the bag, it escaped and the stark reality of Maureen’s condition hit me straight between the eyes. My optimistic plans of Wednesday morning were a pipe dream and are long forgotten aspirations of someone who has lost the ability to recollect.

Today Maureen’s early morning mode is fear and confusion.  Earlier on she was asking who the young woman was who came the other day.  She has no recollection of why we might need a Wednesday night sitter and says she has never met the woman before, despite it being her third visit.  Yesterday morning she told me that she thought her diagnosis of dementia ‘meant she was mad’.

It was a little reassuring when Maureen’s Care Coordinator reminded me yesterday that with vascular dementia just as you think you’ve got it in the bag it changes and you have to get used to a new reality.  She also asked me if I had heard of ’emotional incontinence’ as it could be behind aspects of Maureen’s presentation, and I confessed I hadn’t.  However, there is one thing I generally have in the bag – how to distract and redirect when Maureen is upset: Bocelli is the man of the moment:

Although I recognise that his exalted position could change and I’ll have to find the next idol for a mature lady: thank goodness for YouTube!

Dementia: ‘It’s Surprising What Comes Back’

General

It’s been another early start this morning.  Maureen awoke around 2.30 am, having gone to bed at 7.30 pm.  I followed her shortly afterward and had a reasonable sleep apart from having to rescue her when she was wandering around the house clad in blankets at midnight.   I need to check if the CCG’s plans to bring in a programme for improving sleep patterns for those with dementia and their carers has come to fruition.

As we chatted away this morning Maureen said: ‘it’s surprising what comes back’ as she recalled her father’s funeral but mentioned she had no recollection of her mother’s.  This is the first time I have heard Maureen acknowledge that her parents had passed for ages. Generally, one of her first ideas, on most days, is a desire to contact her parents by phone or letter.

Maureen’s thinking this morning encouraged me to push at a door our Care Coordinator had nudged open a couple of weeks ago, and talk openly about her memory problems.  I have to admit this is something I have been nervous about for fear of creating further distress. Having heard a professional skillfully raise the issue I felt a little more confident about taking the plunge myself. I was pleasantly surprised about the conversation that followed and hope that I have moved things on in a very positive direction:

  • I have suggested that Maureen keeps a diary of her thoughts, achievements, and aspirations – it is already on the coffee table.
  •  Maureen wants to learn how to use YouTube and prompt cards are pending.
  •  Following singing along to ‘Do Cry For Me Argentina’, Maureen wants to find out more about Eva Peron and I will remind her of this aspiration

I’m rather tired after a busy morning: thank goodness our night sitter will be here tonight. How fortunate I am to have Key Worker who encouraged me to engage a night sitter and a Care Coordinator who made it easier for me to raise the thorny issues of Maureen’s memory problems without causing distress.