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: ‘Where’s My Mum?’

Mixed Dementia, ,

Image result for Where's My Mom PictureOne of my favourite ways to start the day is listening to the dawn chorus.  As I lay relaxing to the early morning calls this morning another sound caught my ear: ‘where’s my mum?’  This was nothing unusual and is a familiar cry from Maureen first thing in the morning.

I’m always ‘winging it’ when I talk to Maureen about her mum as she had died years before we met.  Thankfully, I have heard plenty about her from Maureen and her relations.  My reassurances that she was in Nottingham were greeted with ‘why has she left me here?’  Then the going got really tough as I risked trying to fill in the gaps in Maureen’s memory; probably overlooking that she was time-travelling back to her childhood.

One of my usual suggestions, when Maureen is missing her blood relatives is a trip to Nottingham.  Her response this morning was ‘why don’t they come to see me?’  Fortunately, one of her sons came at the weekend and my reminder provided some comfort. Then the offer of a cup of tea was well received but it went cold as she tried to sort out her thoughts and drifted back to sleep.

Distracting and redirecting Maureen’s thoughts will become a little easier when she looks out of the kitchen window at a JCB and a Dumper Truck, on what was our patio. This may remind her of the impending Day Room.  She was rather concerned yesterday about being able to play in the garden whilst building was taking place.  However, she suggested she might be allowed to play in the mysterious Jamie’s garden for the next few weeks.

Thankfully, a short while ago I found a way of changing Maureen reality by whistling ‘You Are My Sunshine’.  Once I got into full throttle she stirred from her slumbers, gave me a big hug and told me what a good dad I was!

 

Dementia: Digger Or Dumper?

Mixed Dementia, Uncategorized

Image result for Small Dumper Picture

Image result for Small jcb pictures

Andy our builder is due to start work on our Day Room this morning.  The extension will run right across the back of the house alongside the current one in the dining room.  It will include an additional a shower room.

I’m going to be spoiled for choice when I need to distract Maureen this morning.  Should she drive the Digger or the Dumper?  It will be interesting to see how things go with workmen around for a couple of months.  However, the prospect of being able to sit all year round and look out on our back garden will hopefully make it all worthwhile:

There are two aspects to Maureen’s reality this morning.  Her early concerns were that ‘I should get out of bed before her mother found us together’ but she reassured me that ‘there would be other opportunities to sleep together’.  A little later she came rushing downstairs worried that I’d gone without her.  I hesitate to speculate what she will think when our builders arrive shortly!

Dementia: Bananas In Pyjamas

Mixed Dementia

 

Image result for bananas in pyjamas

I have made a decision to show solidarity with Maureen this morning: if you can’t beat them join them.  When we go to buy some bananas shortly I’m also going to be clad in PJ Pants.  She has had hers on since Monday and my attempts to encourage to change into more suitable attire have failed.  However, she has followed my advice on another front by taking laxative drinks and things have moved.  It is a relief that the aggression has been flushed away but unfortunately the confusion remains with constant changes in her reality.

One of my daily struggles is working out who Maureen thinks I am at any particular moment in time.  Earlier on, when she gave me the ‘good news’ I was pretty sure that she thought I was her husband.  Less than half an hour later she was calling me grandad and asking me questions about working in a coal mine as if I was her mother’s father.

Maureen is keen to get back home this morning to see her mum and dad: she really misses her birth family and longs to be in the company of her brother and sister.   She has already forgotten my reminder that one of her sons will be here in a few hours.   It will be interesting to see what impact popping down the road to the Spa Stores has on her reality and what the shop assistants think of our attire!

 

Dementia: ‘You Are My Hero’

Mixed Dementia, ,

Maureen spent most of yesterday on the attack, today she is full of gratitude.  My status yesterday was Zeo today it’s Hero.  Thankfully, I knew that constipation was the real villain: creating dramatic changes in Maureen’s presentation.

Unfortunately, we are not out of the wars yet but there is room for optimism this morning with movement a distinct possibility.  It was late in the evening before Maureen accepted the intervention she needed from Rapid Response Nurses after declining help that was offered from District Nurses earlier in the day.

What a difference a week can make.  Seven days ago I was enjoying a meal with two Professors during my Pilgrimage To Paddington.  A week later I was sitting outside the bathroom supporting my wife as she sought the movement she so sorely needed.

Professor Tom Schuller always encourages his former student to share his learning on this journey:

  • UTI’s create confusion: constipation causes havoc.
  •  The prospect of constipation needs to be addressed before Maureen goes into a Care Home again.

Dementia: DNA And Aggression

Mixed Dementia, , 
Image result for Constipation and Dementia Picture
Early this morning I have relied heavily on the advice of our local Pharmacist.  She told me shortly after Maureen’s diagnosis of dementia: Do Not Absorb any insults when she is in a combative mode.  She certainly ‘had one on her’ at 1.30 this morning. I have never had such vitriol directed at me and suspect constipation was the cause of her aggression:
‘If they depend on other people for their care or if they cannot easily find or access the toilet, this can also affect their bowel habits. Constipation in people with dementia can lead to a worsening of their confusion, as well as symptoms of irritability or aggression.
Yesterday afternoon Maureen told me that she ‘couldn’t poo poo’.  District Nurses responded promptly to my request for help.  Her reaction to their presence was tinged with sarcasm and suspicion.  It took quite some time before she gave them permission to feel her tummy.  They decided that any further examination would only cause distress and advised me to continue giving her laxatives.
Maureen woke at 5 am this morning, thinking I was her dad and wanting to know if she was late for an appointment.  Her confusion was paramount and she was adamant that she didn’t need laxatives.  In fact, she suggested that I should take them if I was constipated.
The advice from G P Out of Hours this morning was to contact the District Nursing Team as soon as they open.  Hopefully, Maureen will be a little more cooperative than yesterday and they will be able to get to the bottom of this problem!
This is the third time that Maureen has returned from a Care home with constipation.  It is something that needs to be addressed when I take my next break and an ensuite room would be a step in the right direction.
As I am about to post I hear Maureen in tears at the bottom of the stairs.  She tells me that ‘they have gone without me’ and goes on to say that ‘no one likes me’.   My reassurance that I like her has no impact ‘as I am not at school’.  Her feelings about being poor compared the rest of her fellow pupils keep resurfacing: she paid a heavy price for that scholarship to Nottingham High School!

Dementia: Compassionate Carers

Mixed Dementia, ,

Image result for compassionate Carers picture

I am frequently overwhelmed by the dedication and compassion of Maureen’s carers. When I called into Alderlea Care Home yesterday several members of staff asked me how she was doing.  People I had never met before were genuinely interested in her welfare.  It was reassuring to hear from the Activities Organiser that Maureen had joined in with her programme; entertaining others with her flamboyant dancing.  I think it is likely that they may see further performances from my Dancing Queen the next time I need a break!

We had a pleasant surprise in the afternoon when one of our weekend carers popped in to say hello.  She had kindly offered to cover the shifts of her co-worker who has moved onto other things.  This was great news as she has an excellent rapport with Maureen.  Unfortunately, I made a joke that misfired with Maureen thinking she had cheekily popped in for lunch!

Early this morning, following a toilet break I managed to steer Maureen upstairs for the first time since her return home.  It was good to be together in the marital bedroom once again.

I’ve been following my new morning routine today.  Cyber friends like Henri continue to provide invaluable support on this journey.  Maureen’s early morning focus is on ‘how did we get here and have we moved to a foreign country?’  My Tea Boy duties are currently on hold as our milk is sour.  This will give us a chance to get back into the old routine with a little bit of cognitive stimulation in our local Spa Shop.  My only dilemma is whether to try to cajole Maureen out of the P J’s she has been wearing for the last three days before she ventures outside!

Dementia: Reviewing Our Routines

Mixed Dementia,

I have always found it difficult to settle down after a holiday.  Sometimes I have really struggled to get back into my old routines after a short break in the sun.  My Respite Break has left me with a feeling of uncertainty about where to pick up the reins of being a Care Partner for Maureen.  Therefore, I have decided to draw on the work of two fellow bloggers to help me review my routines:

Henri’s post on ‘How to have a good day’ is giving me a creative start for my mornings.

Christy Turner (Dementia Sherpa) has posted a helpful approach to communication:

We both slept well again last night.  The new sleeping arrangements are clearly paying off.  However, Maureen woke in the night with familiar concerns about being left by herself and then said: ‘I wish someone would adopt me but I suppose I’m too old for that’.  When she woke a couple of hours later she said ‘will someone please help me’ as she couldn’t remember where the bathroom was.

Maureen’s Carers have also been encouraged to review their routines.  Our Key Worker has revised our Support Plans emphasising the importance of taking Maureen out for walks and engaging her in stimulating activities.

It will be interesting to see how Maureen reacts to the new routines.  I’m optimistic that her thoughts on adoption will fade as we all seek to engage her in positive pursuits!

 

Dementia: Facing The Music

Mixed Dementia, ,

The ‘Little Girl’ as Maureen calls her came to my rescue yesterday evening.  As soon as I called her up on YouTube Maureen’s presentation changed:

I was rather shocked by what I saw when I called to pick Maureen up from Alderlea Care Home yesterday.  I watched an elderly lady with a rather hunched posture attempting to escape the attention of a male resident.  She greeted me with ‘here’s Paul’ but I was immediately challenged by her suitor who wouldn’t accept that I was her husband.  He became rather persistent in his questioning of my status and it took the intervention of a member of staff to shake him off.

Maureen’s confusion was paramount as we tried to resolve a missing weekend case full of her clothing.  I found it difficult to comprehend her reality, apart from grasping that ‘I was a wicked man for putting her in this place by lying to them about things she had done wrong’.  She was hostile to all and sundry as we attempted to clear up any outstanding matters from her residence.

Once home it took a short rest, a cup of tea and an evening meal before hostilities began to ease.  Then music paved the way for a beautiful evening with the ‘Little Girl’ working her usual magic.  When Maureen asked me to dance to this one from Rod I breathed a sigh of relief:

This morning Maureen is in raptures about the pleasant evening we spent with her dad last night.  She is delighted that he enjoyed singing with the children!  She is also really pleased that we will be going to a local farm to pick some raspberries this morning.

Tom Schuller my Senior Lecturer from my days at Warwick University, often suggests I spell out the lessons I am learning from our journey.  My simple message this morning is: following a Respite Break always be prepared to face the music and get the fruit in!

 

Dementia: Facing A Dilemma

Mixed Dementia

Image result for A Caregivers Dilemma Picture

During my return journey to Cleethorpes yesterday I continually mulled over whether to bring Maureen’s stay in a Care Home to a premature end.  I’ve had a good break and feel relatively refreshed.  My Pilgrimage to Paddington has been completed successfully and I have met Irving Kirsch along with Tom Schuller:

I called in at Coventry and saw how my mum and brother are being looked after in their respective Homes.  On Saturday evening I had a lovely time in the company of my eldest daughter and her family.

On Sunday morning I sat on a bench in the War Memorial Park thinking about all sorts of things.  I thought about how fortunate I had been that my parents had survived the war: mum sheltering under the dining room table during the Blitz and dad flying 40 missions as a Tail Gunner.

I spoke to the manager at Alderlea Care Home last night and the news remains positive. She reported that Maureen has settled in well and is not giving any cause for concern.  It is really a ‘no-brainer’ to decide whether to bring her home this afternoon or leave it until Wednesday. I know what Maureen has always done when she has faced a similar dilemma, during my depressive episodes: brought me home at the earliest opportunity!

Dementia: It’s Another ‘No Brainer’

Mixed Dementia

When I eventually made it to my brother’s Nursing Home yesterday afternoon he was dozing. His wife was sat at his side showing her absolute affection for her dear husband.  As always she was keen to tell me how well John was looked after and drew the inevitable comparison with his dreadful experience in a previous home.

My visits to Coventry always leave me wondering about standards in Care Homes.  This morning I’m wondering why my mum sleeps to avoid boredom in her place and John has an entirely different experience. My sisterms in law singled out the Activities Organiser as someone who does so much for residents and their families. She mentioned how much money she raises to keep the stimulation going week after week: last week a wonderful singer etc etc.

As I approached mum’s Care Home I met her Activities Organiser. She was catching a bus for a day out with her family. She is a volunteer who I’m  sure does her level best. 

During my visit to mum’s Home the Manager  appeared to be inducting a new member of staff.. The Manager at my brother’s Home was helping a Steel Band to set up whilst trying to eat a picnic lunch.

In the words of my Buddhist friend Dorde it would be a ‘no brainer’ if I had to choose whether to put Maureen alongside my mum or brother. Why on earth would I want her to be sleeping all the time because she was bored? 

I can do little about mum’s  situation. It would be wrong to label the home on my snapshot on one day at the weekend. However, I see no reason for the television to be on constantly in the lounge whenever I’m around. A fellow visitor told me that ‘Jeremy Vile’  was on the other day: I hope mum was asleep!