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: News From Base Camp

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Yesterday was the first time in 16 years that we have had a G P call at our house.  Dr Munjal  is well aware of Maureen’s reluctance to take any medication and spent a long time trying to persuade her to take paracetomol to ease the pain in her back.  He is well aware of Maureen’s preference for natural remedies and knew there was no point in prescribing anything to relieve her anxiety or lift her mood.  I realised that was down to me and my natural remedy was quite simple: camping..

Maureen had become so distressed from her experiences in Ladysmith Road Care Home that I set up camp in the lounge last night.  I spent a reasonable night on a mattress that was close to the sofa where she often sleeps.  That meant that whenever she woke up I could immediately assure her that she was safe.

I decided on camping after she broke down yesterday evening saying ‘she was frightened because she couldn’t do anything’.  We have been up since 2 am having a great time.  Maureen is wondering if we need Planning Permission if we change our lounge into a Camp Site.  This theme continued for a couple of hours as we ‘sent up’ the idea with various hilarious extensions to our early morning theme.

It is important for me to back off for a while as my antics this morning will have tired Maureen out but it was great to see her in such good form after such a harrowing week.  My response to her question about what I’m going to do today was the same as always: ‘we’re going to have an easy day’ – so why not take a day off Mrs Dementia and let the fun continue all day?

 

Dementia: Picking Up The Pieces

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Maureen remains bruised and broken from her experiences in Ladysmith Care Home.

She is now frightened if I’m out of sight fearing I have left her

Her G P will make a home visit around noon.

The Capacity Assessment has been postponed until she is well enough to have the best chance of demonstrating capacity.

This is the second time that respite has had a negatives outcome for my poor wife: she is now a shadow of her former self.

 

Dementia: Off Her Trolley

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Maureen’s recollection of how she gained black eyes and hurt her back is consistent: she ‘fell of a trolley that was travelling at speed’.  She recollects colliding with a door as she fell to the floor.  The Care Home says she fell out of bed and they found her lying on the floor.

Last night was another story of sleep deprivation with Maureen frequently waking up in pain from her injuries.  I doubt I have had more than two hours’ continuous sleep.  This has become a habit that is very dangerous for my well-being and ability to be a supportive Care Partner.  On a couple of occasions yesterday Maureen picked up on my snappy mode and reacted accordingly fuelling a fire of tension that I had lit.

The dangers of Carers Burnout are increasing in tandem with Maureen’s deterioration.  This situation cannot continue without a price that neither of us can afford being paid.  If action isn’t taken today the Best Interest Meeting will be academic, as the next stage of our journey will already have taken an unfortunate turning.  I will be in contact with Sue our Social Worker this morning to confirm to our Care Package for the coming weeks..

 

Dementia: Little Things Mean A lot

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If looks could kill I wouldn’t be around any longer as Maureen’s presentation continues to become more challenging.

I don’t think she knows who I am and she wants nothing to do with the meal I’m preparing, despite it being one of her favourites.

The Capacity Assessment by the Home Treatment Team has been delayed because they have been involved in crisis work all morning.  I hope they will be here this afternoon to carry out the assessment and advise me on the best response to Maureen’s presentation.

Sue our socail worker is trying to organise additional carer sits for the weekend.  I hope the weather is kind and I’ll be able to have a refreshing walk in the sunshine: little things mean a lot when Mrs Dementia has got one on her.

Dementia: Mission Impossible

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Some time ago Yvonna our pharmacist advised me to work on my DNA: to learn not to absorb when Mrs Dementia was at home.  When Mrs Dementia surfaced last night bad mouthing her mother and my inability to explain her lack of contact I realised that my DNA mode was lacking.  Fortunately telephone advice from a nurse on the Konar Suite  ‘to give her space and ensure she was safe’ saved the day.

I think Maureen’s ‘Official Birthday’ may have been too much for her.   We may got it wrong and she smelled a rat with me on the phone as her son tried to keep her busy.  In retrospect I could have joined the party and progressed business today.

Conversations with our G P and my Counsellor at Clee Medical Centre yesterday caused me to consider if it time to accept that looking after Maureen at home is no longer a viable option. This has led me to request adequate time to sort out my thinking on my preferred way forward.  However, before I can look at options I need to still my mind with some Buddhist input.

I  am already re reading Modern Buddhism with particular reference to attachment. I will contact Ed, my friend, from Meditation Classes in Grimsby to chat over my take on attachment.  Further respite at the Madhyamaka Centre can only help me to develop the peaceful mind needed to tackle the next stage of our journey.

This morning my role of minimising Maureen’s distress is becoming Mission Impossible.  She is extremely confused and in considerable pain from her stay in Ladysmith Road.  On the advice of G P Out of Hours Paramedics have called to check her out and she is a different woman in their presence.  Mrs Dementia who couldn’t get off the sofa has been seen off by Maureen who is now fine and dandy.  

It will be interesting to see who is here when the Home Treatment Team arrive to conduct a Capacity Assessment later this morning. 

 

 

Dementia: Bruised and Broken

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Maureen has a black eye, extreme back pain and in the words of her son ‘has been broken’ by her spell in Ladysmith Road Care Home.  I am meeting the Manager on Monday to hear the results of her investigation into Maureen’s treatment whilst in her care.

I will also document all my concerns about Ladysmith Road Care Home for the attention of the Clinical Commissioning Group and our lawyers.  When I have time I will take similar action over my concerns with our Care Agency.

Our G P has confirmed that the results of tests on Maureen’s sample are negative and she has not had an infection.

The Home Treatment Team will carry out a Capacity Assessment of Maureen tomorrow morning.  This will inevitably lead to a Best Interest Meeting to determine how Maureen’s welfare can be protected.

The next step on our journey has now been taken out of my hands: I have to reluctantly accept that I am losing control of Maureen’s destiny.

 

Dementia: Action Man Saves The Day

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I have mentioned before that Maureen often says to me: ‘what’s the plan Action Man ?’ Once I had the news from the Review Meeting: a diagnosis of moderate to severe dementia along with advice that a prolonged stay in the Care Home would be counter-productive I took on the mantel.

As I sat holding Maureen’s hand I saw the distress the chaotic atmosphere of the Orchid Suite was causing.  I realised what I needed to do: get her home as quickly as possible without upsetting anyone..

I do not have the space or energy to detail how I negotiated her early release from the Care Home.  It is fortunate that it is the start of the month and there was plenty of credit on my Mobile.  What I would like to do is pass on my thanks to all those people who gave us such excellent support in our hour of need: family support along with a local commitment to looking after carers and their loved ones shone through.

Maureen remains in considerable pain this morning.  Every time she moves in bed she is moaning in response to the discomfort she feels from her injured back.  It is fortunate that I cajoled her to have an x ray yesterday evening and we know that nothing untoward has happened.

We decided earlier this morning that today would be ‘Maureen’s Official Birthday’ as she didn’t have time or energy to open a single card yesterday.  Despite an early morning reminder she has forgotten that her youngest son Colin will be here later.

 

 

Dementia: Person-Centred Care Personified

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I arrived at Maureen’s Care Home this morning to find her with a black eye, a cut on her nose and pains in her back.  Her account of what happened does not tally with the information I was given by care staff.  When I attended Maureen’s Review Meeting I was told she has moderate to severe dementia and staying in the home could exacerbate  challenges from her presntation..

Maureen is now home and sleeping on our sofa with the blessing of the Home Treatment Team.  It will take me a while to secure a Care Package to protect our well-being: getting Maureen home has been the priority.

For years we have not bought each other birthday presents as our motto is ‘ your presence is my present’.  On Maureen’s 78th birthday today’s action may just take the biscuit and she has just had four with her ‘first decent cup of tea for days’!

Dementia:Person-Centred: Rhetoric Or Reality?

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There is a possibility that today will not be a good birthday for Maureen: that must not happen.  However I’m optimistic that person-centred care approach of the Home Treatment Team will be reality rather than rhetoric.

Once again I liaised with Maureen’s Care Home before I spent time with her yesterday.  We decided to delay my visit until the afternoon to give her time to find her feet after a period of being unsettled: she didn’t go to bed until 5 am on Monday.

I can empathise with why Maureen is totally unhappy in the Care Home.  She would be even more concerned if she was aware that they have felt it necessary to restrict her liberty with DOLS.  Her situation reminds me of how I felt when I was Sectioned and detained in a Mental Health Unit a short distance away.

It was fortunate that my Carers Assessment was scheduled for yesterday morning as it gave me the opportunity to check out with our Social Worker what lay ahead.  I am reassured by the thoroughness of the process but concerned by the length of time it will take before a ‘Best Interest Meeting’ can be convened to determine the way forward.

I realise that a thorough assessment of our needs is essential to ensure the well-being of the ‘dynamic duo’.   Yet there is something about the process that is really giving me cause for concern: Maureen is being assessed in a unfamiliar environment that is causing her great distress: my respite is turning into her nightmare.

My prime function as Maureen’s Care Partner is to minimise distress.  Unfortunately, the current respite arrangements are having the opposite effect.  In my opinion it is now counterproductive for Maureen to stay in the Care Home any longer:  it is doing her more harm than good.  This is no criticism of the regime, or the staff, they are doing good work in a very challenging environment.  That environment is unsuitable for Maureen at this stage of her condition.  I will assert that position this morning.

I hope I can get Maureen to keep singing this song to remind her we are on her side:

I can never be ‘Union Jack’, as Maureen’s dad was fondly known but I hope she can remember  I will summon the troops to help her preserve her independence.  That is something ‘Team Collins’ and ‘Team Wilcox’ will always do: support each other.

Footnote: My birthday present to Maureen is a Memory Box with all sorts of mementos to remind her how much she is loved by so many people.

Dementia:Have I Upset The Apple Cart?

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It is possible that my visit to see Maureen yesterday has unsettled her.  The Care Home have been in touch this morning on another matter and told me that she was very disoriented last night and didn’t go to bed until 5 am.  I have agreed to contact them after lunch to discuss whether to visit today.

Following a conversation with Melissa from the Home Treatment Team we have agreed not to celebrate Maureen’s birthday tomorrow.  There seems little point in reminding someone who is waiting for warmer weather before she can don a skirt or thinks Christmas is around the corner that it is her birthday.