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: Changes Ahead

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Image result for Regime Changes Picture

Maureen’s enthusiasm for the trip to Nottingham dwindled in the final hour before departure yesterday.  When our chauffeur arrived she was adamant that she didn’t want to see her sister: ‘she was cold and her sister should be coming to see her’.  When I saw that my efforts to shift her from the sofa were causing distress I paid our ‘Black Van Man’ a token cancellation fee and bade him farewell.

Although I was disappointed that our away day didn’t happen I’m pleased with what I achieved with an ‘extra day’ on my hands.  It gave me the opportunity to clarify three important matters.

  1.  In future, I will be using the Alzheimer’s Society for support.
  2.  It is legitimate to ask carers to undertake domestic duties.
  3. Maureen will be consulted in the development of our Sun Room.

I’m meeting the Manager of the Alzheimer’s Society this morning to look at a clock that might help Maureen to regain some concept of time.  This will also be an opportunity to explore the nature of the support that will be available in the future.

When Girl Friday (Maureen’s Hairdresser) arrives at ten she will encourage her to have one of her ‘Pamper Days’.  There will be plenty of other tasks in the diary if Maureen says she prefers my company in the shower.

The roof tiles for our Sun Room arrived yesterday and will be ready to be put in place next week.   Following a number of discussions with our builders, we have revised our plans for this extension to our house.  The last thing Maureen needs at the moment is anything that necessitates changes to her normal routines, without her consent!

The clarification that has now taken place will ease my workload along with the potential for Carer Burnout.   If we are also able to build short holidays into our routine, the need for a Respite Break with Maureen going into a Care Home has to be called into question – that would be a change really worth shouting about!

 

 

Dementia: ‘It’s The Noise Stupid!’

Mixed Dementia

Image result for It's The Builders Noise Stupid Picture

Almost as soon as the builders started work yesterday Maureen yelled at them to ‘shut up’.  Her verbal retort to their banging and sawing helped me to ‘wise’ up on what was behind yesterday’s anxiety – I immediately thought: ‘it’s the noise stupid!’

It didn’t take long to persuade Maureen to escape from our noisy building site.  Once she was out in the peaceful surroundings, and the genuine warmth of folk around the local Market Square, she was a changed woman so we made hay while the sun shone:

  • We sought out our friendly greengrocer who knows us from Freeman Street Market.  He set the scene by telling Maureen how pleased he was to see her.
  • We then popped into a newly opened travel shop to explore a possible trip to the Isle of Man.  They were dementia friendly and handled Maureen’s questions positively.
  • Our final call was to a Beauty Salon to book a Pamper Day for Maureen next week.  We got to know the owner when her husband was a patient on the Stroke Ward at Grimsby Hospital at the same time as Maureen.  She understood the need for flexibility in the arrangements that were made.

When we returned home, a high spirited Maureen bantered with our builders about using a rubber hammer in future.  She then fell asleep on the sofa and woke as our Key Worker arrived to check on how we were doing.  She woke up in tears and told him: ‘they had broken their promise to allow her to go home’.

Our Key Worker stayed for over an hour as he was about to leave I managed to have a quiet word with to request an assessment of  Maureen’s condition.  I had to emphasise that I was not seeking another pointless Memory Test.  Therefore, he offered to make a referral to Occupational Therapy.  Their assessment should provide the base line for good practice in the future by all and sundry: including her Care Partner!

Our builders have warned me that today is going to be an extremely noisy day so we will be leaving to visit Maureen’s sister in Nottingham very soon.  The only noise Maureen will hear in the next couple of hours will be the purr of the engine from our chauffeur driven Volvo and my chatter as we hold hands on the on the back seat!

Reasons To Be Cheerful

Maureen is so excited about the prospect of seeing her sister today.  I’m ecstatic that we have slept together for the second night running.  I realise it’s dangerous to count your chickens when dementia is around but if I didn’t accentuate the positives Maureen would be after me!

Dementia: Seeking Help

Mixed Dementia,

Image result for Asking For Help Picture

I have never seen Maureen as frightened as she was yesterday.  It was a while before she told me that ‘she didn’t know me and was frightened about being locked in the house’.   I think there is a distinct possibility that she has become distressed by witnessing our back garden becoming a building site.  Her comments about ‘two heads being better than one and not being consulted on the plans for our Sun Room’ are revealing and justified.

I was warned that embarking on a building project was a risky venture.  Our builders are now in their 5th week of being on site and could well be here for a similar amount of time.   They are dementia friendly and very happy to work with us to minimise Maureen’s distress as well as achieving a positive outcome.

The graphic below accompanies a recent article by Leeanne Chames who stresses the importance of carers reaching out for help.  I began that process yesterday seeking advice from Admiral Nursing and the Alzheimer’s Society on how we might make the best use of our extended home.  I will also seek guidance from our Key Worker this afternoon on how we could go about reviewing my approach to supporting Maureen.

The irony about Maureen’s distress yesterday that she currently remains asleep in the marital bed.  She climbed in beside me shortly after midnight and she has never been the sort of person who would sleep with strangers.  The more I witness changes in Maureen’s behaviour the less I understand what is actually behind her presentation!

 

Dementia: Facing Reality

Mixed Dementia, ,

Image result for Facing Reality Picture

I felt tired and completely overwhelmed by our situation yesterday.  Throughout the day I struggled to cope with my environment.  Maureen’s presentation fluctuated at such a rate that at one stage I doubted who I was and where I lived.  Our builders, along with two joiners, were making such a racket that any thoughts of a siesta were out of the question.  The shell of our Day Room was being used as a dumping ground and resembled a bomb site.  Towards the end of the day, I began to wonder whether I had got carried away with the ideas about a Day Room and was failing to face the reality of life as a Care Partner.

Maureen woke very early this morning and I tried a bit of Barney to cajole her into the marital bed:

This was a person-centred approach as Maureen loves a lot of Barney and will always join in with the chorus.  Once again she was ‘having none of it’ as they say and went on to berate me for ‘never being at home or often in the bed of others’.  It didn’t take me long to understand that she was confusing my behaviour with ‘her previous’.  However, shifting tack again did the trick and led to a really positive outcome.

I decided to give Maureen space before turning on Mr Nice Guy by telling her about my faltering attempts to return to drawing.  After describing my struggles with the pencil yesterday I told her that I wanted to attempt to sketch her while she was sleeping.  She then asked me what I wanted to do today and I suggested going for a walk on the beach and collecting shells.  We made this a date and collection will begin later – weather permitting.  If our mission is successful we plan to paint the shells and add to the collection that we already have from the efforts of our grandchildren.

The reality of this morning is that Maureen may well forget about our planned walk on the beach.  What I have to face is that I can’t go on like this: no-one could or should be expected to.  The demands being placed on me are unsustainable.  This became obvious when I met our Key Worker last week.  He was uncomfortable with my plans to engage a carer for a 48-hour stint so I could have a break.   Any reader of this blog will be aware of the exhausting sagas that have followed previous ‘Respite Breaks’.

I have not been able to sleep, and have been ruminating over our situation, since my early morning awakening.   A ‘Respite Break’ is far from the solution, in fact, we have been worse off after a period of separation.

The ‘shell seekers’ have to come up with their own solutions to the challenges we now face.  Some of my initial thinking has been along the following lines:

  • Using carer sits to reduce my involvement in domestic tasks and cooking.
  • Exploring the possibilities of short breaks together.
  • Exploring new activities together and with others.
  • Seeking advice on how to make our home more dementia friendly.
  • Reviewing the outline plans for our Sun Room.

There is no doubt that the level of support we receive in our neck of the woods is exceptional.  The attempts to support carers and their partners in a person-centred way are genuine.  However, the reality is that I’m tired and ‘Respite Breaks’ have not worked: so we have to try something different!

Footnote:  Just as I am about to post Maureen is campaigning to be taken home.  She doesn’t want to stay in here any longer as she is now fully recovered.  I doubt we will make the beach this morning but the aspirations of the ‘shell seekers’ remain viable!

 

Dementia: A Change Of Tack

Mixed Dementia,

Image result for Changing Tack Dementia Cartoon

I got it completely wrong this morning with my 2 ‘o’clock greeting to Maureen as I heard her make her way upstairs.  She didn’t respond at all well to my Charlie Drake impression of: ‘hello my darling’.  It soon became clear that the feelings were not reciprocated as I was the man who was encouraging her ‘to sleep or dress up in horse blankets’.  She then went on to ask ‘why was I talking in a strange voice or if I was drunk?’

It didn’t take me long to grasp that my aspirations to get her into bed beside me were rather optimistic.  Clearly, my hopes to provide early morning cognitive stimulation were out of the question: getting my marching orders were far more likely!  However, rather than leave Maureen to rant I decided to change tack in an attempt to shift her reality.

My first move was to address the horse blanket issue head on and agree that we needed softer bedding.  Two old nags like us need the comfort of continental quilts and all we have to do is cut up a double to make two singles.  Having solved this issue I returned to something I had mentioned yesterday: to start sketching again  I  showed Maureen some of my previous work.  She suggested that I had a hidden talent for drawing and that led me to mention Susan Boyle.  Once I called her up on YouTube we were away; singing along for over an hour, especially to this one:

I think I will leave my Charlie Drake impressions alone for a while: I’m clearly not at my best first thing in the morning!  Sketching is something that may well become a joint activity particularly if I choose the right moment and have some music on in the background.

A short while ago Maureen asked me ‘how is grandma this morning?’  I’m used to her not knowing who I am but her son was shocked yesterday when for a while she thought he was her brother.  He was also surprised by how much her dementia had progressed since his visit earlier in the month.  Maureen has not mentioned anything about her son following his visit and remains distressed by the absence of visitors!  I have asked our Key Worker to visit on Wednesday afternoon to review Maureen’s presentation.  It is now a year since I was told Maureen had ‘moderate to severe dementia’ and her son and I both wonder if that diagnosis is still appropriate.

Dementia: Having It Off

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Image result for Having The Weekend Off PictureI have decided that until further notice I will not be posting at the weekend and intend to keep all social media switched off.  This will give me plenty of time to explore whether playing this week’s selection of Good Music really does improve cognitive function!

Dementia: Raising The Roof

Mixed Dementia, Uncategorized

Image result for Raise The Roof Picture

There are lots of reasons to raise the roof  today in our neck of the woods:

  • Navigo has once again been nominated for a national award for its work.
  • The ‘joiner’ is due today or Monday to begin his work on Our Day Room
  • I’m meeting our Key Worker this morning to review how things are going.

When Roy Lilley praises something then it is worth taking note.  He was full of praise of Navigo following his flying visit to Grimsby earlier in the week.  As I have often posted we are very fortunate to live in North East Lincolnshire where person-centred care and support for carers is the order of the day.  There is also a willingness to listen when things are not going well.

Our builders continue to make significant progress with our Day Room.  The shell of our extension is now standing and if a joiner makes it on time we will be ready for the roofer next week.  Maureen often goes out to check on the progress of our builders and their interaction with her is ‘as sound as a pound’.  If there was a register for dementia friendly businesses I would campaign for their inclusion.

I’m looking forward to my meeting with our Key Worker this morning as we need to consider Maureen’s presentation.  He is the only professional that Maureen ever remembers.  She often asks if ‘Ginger’ will be popping in to see us and that is a mark of his impact: she has no idea who the other professionals are!   She is also unaware how he will pull out all the stops to support us to continue living together in our own home.

 

Dementia: Just When I Needed You Most

Mixed Dementia,

I did my very best to give Maureen a lovely birthday.  Things went well until late evening when we walked along the Prom and Maureen she told me that she felt so alone living in a strange place.  This feeling intensified when we returned home: ‘somewhere I had bought with money I had stolen from her’.  This theme continued as the evening progressed until I decided to take myself out of the firing line and go to bed.  I was awoken a couple of hours later by Maureen banging on our front door and begging to be let out.

Once I was in sight the verbal assault continued about my selfish nature: ‘bringing my wife to a horrible cottage and completely ignoring how she wanted to spend her time.’   The attack became relentless and I phoned Single Point of Access to advise our Key Worker that I was exhausted I would need additional support today.  As always he will phone as soon as he in the office to discuss an appropriate way forward.

Once things calmed down a little with Maureen eventually apologising for her ongoing outburst, I had time to think about what was going on.  I  noticed that all of her birthday cards were scattered around the house unopened.  I remembered how she had been adamant that people should be coming to see her on her birthday rather than chasing around the country to see them.  Then I also recalled how she had refused to take a phone call from her son late in the evening: we had missed earlier calls from him and his brother.

Maureen’s presentation on her birthday reminded me of David Sheard’s  thesis that feelings matter most with dementia:

How would we expect someone with moderate to severe dementia express feeling deserted of their birthday?  What other option did  Maureen’s have than to share her feelings of neglect with the only person who had been present on her birthday!

Dementia: Distract and Redirect With Helium

Mixed Dementia

This morning I have used helium to distract and redirect Maureen.  Half an hour into her birthday she was crying that she wanted her mum.  I tried to console her for a while before encouraging her to seek further sleep.

Once she was in the land of the nod I fetched a helium filled balloon with ‘Happy Birthday’ on it from my car.  She stirred when I came back in the house and was very pleased to be reminded that it was her birthday.  I then decided to begin the birthday celebrations by calling up appropriate songs on YouTube.

The early morning birthday party continued for a couple of hours.  I’m not sure how we will spend the rest of the day.  I have suggested visiting family but her understandable reaction has been: ‘why should I go and see them, they should be coming to see me?’

I very flattered by Maureen’s thoughts that she just wants to spend the day with me.  However, I hope we are able to catch up with some people who are never too busy to show Maureen how much they love her!

Footnote: I have blanked out Maureen’s face following safeguarding advice.

Dementia: Dreams and Reality

Mixed Dementia

Image result for Dreams and Reality Dementia Picture

The times I really feel out of my depth here is when Maureen wakes up after a sleep.  Yesterday was a prime example of my struggle on this front as she awoke from her afternoon nap convinced that ‘her sister was missing in the water’.  It was one of those occasions when I decided it was advisable to challenge her reality by telling her that she had probably been dreaming as we hadn’t seen her sister for months.  I even suggested that she should make a phone call to confirm that her sibling was safely at home in Nottingham.  She replied that this would be pointless as she didn’t know where we were herself!

Our Key Worker contacted me yesterday to touch base after being on leave for over a week.  He was obviously concerned about the early morning events and wondered if such episodes were becoming more frequent.  He has also raised concerns about the back up that would be available for Our Night Sitter with my plans for her to be on duty for 48 hours in mid-August so that I can go to the Buddhist Centre in Pocklington. Therefore, we have agreed to have a catch-up meeting on Friday morning.

I’m very conscious that my Blog is becoming a place where I concentrate on the extremes of Maureen’s presentation.  The events of Monday morning meant that I didn’t share a very positive experience from Sunday morning.  With an LP by Roy Orbison on the deck, I decided to try a little art therapy.  As Maureen sang along with Roy she even added the ‘GRHH’ in Pretty Woman:

She coloured in a picture for a while and even wrote me a message. Unfortunately, the book that we were using has gone missing, so I can’t share her work. What was interesting was her that phonetic spelling of my name as ‘Parl’ and you as ‘yoo’.  I’m out of my depth trying to draw any conclusions from her writing.  What I do know is that playing familiar music in the background seemed to encourage Maureen to participate in new activities and is a strategy worth repeating.