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: A Day Of Pleasant Surprises

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Yesterday was a good day full of really pleasant surprises.  During my early morning swim, I resumed chatting to a woman I had spoken to the previous week.  From my routine in the water, she had gathered that I  was addressing the consequences of hip replacement and she was doing the same.  As we chatted we realised our paths had crossed on a previous occasion when Maureen had taken her on a hike around the Boating Lake as I exercised at the Leisure Centre.   Maggie was another excellent carer lost to the cause because as she put it: ‘it was costing me money to work for that Agency’.  She had decided to call it a day three years ago as she was fed up of the minimum wage, irregular hours and no time or payment for travelling between calls.

I could hardly believe my eyes when I popped in to see my dear wife shortly before noon.  She was fast asleep lying on a bed in a room that she had refused to enter on the previous day.  She stirred as soon as she saw me and gave me a beautiful smile.  When I saw the clothes she was wearing I was amazed: a pair of new trousers that she had sworn were not hers for a couple of years were being worn.  Then it got even better when she held out a hand with beautifully manicured nails varnished to perfection.

Maureen was eager to tell me so many things that she had been doing since my last visit.  She had clearly been fascinated by ‘a man who could read the stars’.  This man had been to University and his ability to read the solar system had clearly fascinated her.  Then she mentioned that she had been involved in craft activities.  She told me she had made a cushion cover that she had kindly given to a young boy.  In some ways, she regretted her generosity as she would have liked me to have seen her handiwork.

As we sat chatting in Maureen’s room a member of staff arrived and asked me if I would like to stay to lunch.  I would have been proud if I had served the chicken hot pot that arrived – it was gorgeous.  Maureen had fish although she ate it, she told me it wasn’t quite as good as my cooking.  The sweets that arrived were lovely Maureen chose bananas and custard and I had a chocolate sponge with a similar sauce.  Our meal would have done credit to a four-star hotel.

Shortly after lunch staff ran a check on Maureen’s vitals and she passed with flying colours.  I suggested that it might have been a time when Maureen would have consented to the outstanding ECG but unfortunately, the doctor was unavailable to carry out this assessment.

It would be risky to suggest Maureen is settling on Konar but yesterday was full of pleasant surprises.   She remains concerned that her independence is often under threat and resents being told when to take her medication or have a wash and change her clothes.  This is a familiar tale that challenges us all as we try to provide the support that Maureen needs and without challenging her independence.

The good news from Konar this morning is that Maureen slept through the night in her room from 8 ‘o’ clock!  I didn’t do as well as that but after a couple of hours in the afternoon managed 6 further hours in bed.  I’m sure as we both get the rest we need we will be both in a much better position to make sensible choices on our journey!

Dementia: A Person – Centred Partnership

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  • After discussions with staff on the Konar Suite yesterday I’m feeling a lot happier.
  • It seems likely that Maureen will lack capacity about her health and welfare needs.
  • Best Interest decisions may well feature in Maureen’s Treatment Plan.
  • There will a partnership approach to the development of her Treatment Plan.
  • We have agreed; I’m the expert on Maureen: they are Specialists in Dementia.
  • Maureen’s reluctance to take her prescribed medication or have an ECG continues.
  • At night Maureen continues to sleep in a chair in the company of staff.
  • She told me she doesn’t like her room and finds the bed uncomfortable.
  • When I offered to sit in her room with her yesterday she declined.

I’ve just spoken to the Konar Suite and once again Maureen slept in a chair in the lounge last night.  The good news is that she has been in her her bed for the last hour.  My sleep isn’t much better.

I’ve been up from the early hours putting furniture in our Sun Room.  It looks great now with vinyl flooring down a few plants delicately placed alongside a table and a couple of chairs.  It will be interesting to see what Maureen makes of it when she is home.  I will post some photographs of my work tomorrow.

 

 

Dementia: Sent To Coventry

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Maureen continues to be uncooperative with the regime in the Konar Suite.

She has ‘sent the medical staff to Coventry’  and refused an ECG yesterday.

Perhaps, this is part of her strategy to get back home to the Midlands.

She is very angry with me for ‘telling lies’ that have led to her incarceration

I look forward to hearing the plans of  the Multi-Disciplinary Team this morning

 

Dementia: Imagine

Imagine:

  • On Wednesday your Key Worker takes you out for coffee and cake.
  • He leaves you to a strange place where there are lots of other people.
  • At night you sleep on a couch in a large room.
  • In the morning you are surrounded by people you don’t know.
  • On Thursday night you again sleep on a couch.
  • On Friday morning your husband – pops in to see you.
  • He rescues you on Friday evening from a noisy incident in a social area.
  • You wake up alone on a bed around midnight.
  • You make your way to the lounge to sleep on a couch.
  • Your husband returns in the morning for a short visit.
  • Two unknown women arrive and take you to a strange place.
  • You are surrounded by strangers and have no idea where you are.
  • Your husband arrives the next day and can’t explain what is going on.
  • You think you are on a Cruise Ship.
  • He returns in the evening with some sandwiches.
  • On Monday morning a Doctor wants to chat with you but you refuse to talk to him
  • Your husband arrives shortly before noon.
  • You think you are in a Market and have bought some vegetables.
  •  You have lunch with your husband in a small lounge.
  • You ask him to take you home but he is unable to help you.
  • A short while later your husband has gone and you don’t know why.

The above events can only have increased Maureen’s level of confusion.  I would contend that any attempt to assess her within Konar’s 72-hour target would be short-sighted!

Dementia: Battling Giants

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I got a distinct feeling that I was ‘Battling Giants’ yesterday – a position that Gladwell explores in his book ‘David & Goliath -Underdogs, Misfits and the Art of Battling Giants’.   In my early dealings with staff at the Konar Suite, I was in despair with haunting memories of a professional belief in ‘chemical imbalance’ from my time as a patient at Harrison House.  Fortunately, late on a Sunday evening the Head of the Unit appeared and eased my troubled mind.

My memories had been sparked by a meeting with two Nurses from the Konar, with one taking notes on a Lap Top.  When I heard that Maureen would be seen by a Consultant in the morning and he might prescribe medication then my concerns intensified.  I wondered how on earth anyone could assess Maureen’s needs when she had been in Konar for such a short period of time?

It wasn’t just the informal gear the Head of Unit was wearing that impressed me; it was her compassion and sincerity.  Along with: ‘if you have any concerns at any time then ask my staff to contact me’.  She assured me that ‘Konar was not in the business of medicating anyone for the sake of it and the priority was to assess Maureen’s needs’.

David knows that Goliath can always use the Mental Capacity Act to assert what is in Maureen’s Best Interest.  However, he is reassured by extracts from Konar’s Misson Statement:

‘What Services do we offer:

Konar provides an evidence-based, high quality, individualised service …….

Our Aim is:

  • To provide person-centered care, addressing the whole persons needs including body, mind, emotion, and spirit.
  • To work with carers where appropriate ensuring they are included in all aspects of care, future needs, and treatment.’

I’m reassured that Maureen is in good hands at Konar: my initial panic has ebbed. As David, I have a Mission Statement and a friend indeed whenever I have concerns!

 

 

 

Dementia: Real Suffering Verses Compassion

Today’s Buddhist teaching has great relevance to my thoughts this morning:

When I popped into Alderlea to warm Maureen’s toes yesterday she was sitting at a table, with a fellow resident, having breakfast.  I watched her for a while and chatted to a Senior Carer who remembered me as Phil Collins the guy who had checked out the Care Home of her previous employer.  I could see that Maureen’s hair was glistening and guessed correctly that she had been in the shower.  The Senior told me how Maureen had returned from personal care holding the hand of the carer.

When Maureen saw me she smiled and said ‘here’s Paul and is Barrie there’.  It didn’t take me long to figure out that she was expecting us to catch a bus so that she could go home to Nottingham to be with her her birth family.  I was relieved that she had no idea of what lay ahead: admission to another strange place -the  Konar Suite.

I used the thermal socks that I had bought as a distraction and left her newly found carer friend to check that they were the right size as I headed for the exit.  As I drove home I reflected how within the space of three nights my wife had become a dependent child – a shadow of the woman I know!

I was very reassured when I heard the news that Maureen’s transfer to Konar had gone well.  How kind of The Head of the Home Treatment Team to let me know that Maureen had been moved by people who knew her.  Similar kindness was shown by a Nurse from Konar who phoned to tell me that Maureen had settled down to being on the Ward.

I am meeting a member of staff from Konar this morning to help them develop a Care Plan for Maureen.  Although I’m inclined to accept their advice about when to visit my wife.  However, I’m concerned that delaying things could leave her feeling abandoned in a strange and frightening environment: that’s compassion rather than suffering!

Dementia: Comin’ In and Out of Your Life

The number of the week has always been one of our special songs:

 

With Maureen in a Care Home and about to be moved to an Acute Mental Health Unit (Konar Suite) in a couple of hours Barbara Streisand nails my feelings this morning.

When I visited Maureen last night I got a glimpse of life in her Care Home.  One of the carers was trying to deal with an aggressive resident who was lashing out verbally and physically.  Maureen was cowering within the relative safety of a friendlier crowd.  Her fear was palpable with concerns that nobody liked her and she was at risk of assault.  It took me quite some time to entice her to the safety of her room and nurse her to sleep.

This morning two Support Workers from The Home Treatment team will move her into the unknown – the Konar Suite.  I have been advised to leave it to them and visit in the afternoon after Maureen has been admitted.

The new from Alderlea this morning is that Maureen has had a restful night.  She stayed in her room until midnight then moved onto a sofa in one of the lounges.  I’m going to pop down with a new pair of thermal socks shortly – can’t have my dear wife having cold feet as she is transported to Konar!

 

 

Dementia: The Tipping Point

I’m sure some readers of this Blog wonder what led me to change my mind about Care Homes and the Konar Suite?  Why had someone who hardly has a good word to say about Care Homes and was unconvinced about the Konar Suite changed his mind?

When I look back there were three main reasons.  Firstly, professional staff who I have a great deal of respect for continued to ask me to review my thinking.  Secondly,  when Maureen told me ‘she didn’t know where or who she was and had no idea what was going on’.  Thirdly, when she handed me this crumpled photograph and told me it was a bill:

As you can see I’ve straightened it out now: hence the distortions.  I wasn’t upset that it was one of our wedding photos.  What concerned me was that I had stood it on our mantelpiece on our Wedding Anniversary to try to remind Maureen that we were married.  I had played Wedding Day by the BeeGees every morning and told her how proud I was that she was my wife.  I had told her how much I loved her as the Brothers Gibb had sung this beautiful song.  I had put my hand next to hers as the music played so our wedding rings were touching.  Although she may have grasped what I was talking about at that time, this photograph became a bill: that was the Tipping Point

The news from AlderleaCare Home is that Maureen thinks she is in ‘Marks and Sparks’ trying to find the train station.  She is sleeping on a sofa just like she does at home and was still in the land of nod when I checked up on her early this morning.  I’m off to the Leisure Centre again shortly; to swim and then revitalise in the Health Suite.

Dementia: Taking A Break

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When you  are exhausted and your wife says to you:

‘I don’t know who I am.

I don’t know where I am

and I don’t know what is going on.’

It’s time to take a break to give yourself time to think.

This is why Maureen is now in Alderlea Care Home for the next week.

 

Dementia: Our Pocket Rocket

Image result for Little Miss Pocket Rocket pictureShe won’t be with us today our Pocket Rocket.  I was tempted to call her Little Miss Dynamite until  I heard what a Senior from her Care Agency called her.  She will be back tomorrow and Friday so she will then have been with us for four days this week.

Our PR generally has Maureen in the palm of her hand but yesterday she was sent to Coventry during the early part of her shift.  Maureen ignored her greeting when she walked in the door and appeared to be sulking during the early part of her shift.  When I returned home after my shopping mission all was fine and dandy; with the girls busy as music played in the background.  With five minutes of her shift remaining the PR enticed Maureen upstairs to make sure she was well clad for the rest of the day.  How on earth she managed to get Maureen into sensible gear in that time I will never know – it can take me half an hour!

I haven’t a nickname for today’s Girl Wednesday. She used to be a regular until she changed her shift pattern.   She is another excellent carer who always encouraged me not to pander to Maureen.  I always welcomed such gentle guidance from an old hand.  It will be interesting to hear what she makes of Maureen’s presentation today as she hasn’t seen her for a couple of months.

I clearly need to eat my word this morning after another challenging night.  It was after midnight before Maureen dropped off.   It looks as though she is getting used to Lorazepam – half a tablet no longer has the impact it previously had.  I will get our GP’s advice on upping the dose.  I will also contact our Key Worker to request a couple of Night Sits to see if that can help us through this challenging period.

My Admiral Nurse is expecting my phone call today and this will give me an opportunity to discuss the prospect of Maureen going into the Konar Suite – there are no beds available at the moment.  I’m fully aware that Maureen might need ongoing medication and that could be the outcome of a stay on the KS.  Despite my reservations about medication being the answer, I’m impressed by NAViGO’s attempts to help patients understand bthe:

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