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: The Shape Of Things To Come?

Mixed Dementia,

 

Image result for The Shape Of things To Come With Dementia Picture

I’m drafting this post at 11 ‘o’ clock at night hoping that Maureen will fall asleep while she is downstairs by herself.  It is pretty wild outside so it is not a good time to wander the streets with her as she tries to find her way home to her husband and children.  She is aware that I have locked her in and has accused me of ‘losing it’.  This is a rather disappointing end to a very pleasant evening listening to some of our favourite records.

Nat King Cole dug me out of a hole earlier in the day after Maureen reacted with hostility when I suggested that she might like to go shopping with a new carer.  She remonstrated with me strongly to that suggestion making it very clear that ‘I should stop trying to interfere in her life’.  Half an hour later she was singing and dancing with the new kid on the block as Nat serenaded them both.   Girl Tuesday afternoon will be back next week at a slightly later time.

I’m now on another steep learning curve of how to balance Maureen’s safety whilst minimising her distress.  I would still contend that it is premature for a DoLS application as that might well restrict my room to negotiate a pragmatic way forward.  This is one of the many issues I need to discuss with our Key Worker when we meet at 9.30 in the morning.

Update at 7 am:  The night passed relatively peacefully with Maureen eventually making her way upstairs.  She woke a couple of times in the night concerned about the welfare and whereabouts of her mum.

Maureen’s demanour this morning has me completely baffled.  She is trying to work out if we are married and if she has been down the aisle on a previous occasion.  Whilst her confusion on her marital status is paramount all underwear is in place for the first time in ages:  perhaps she has called time on being a member of Women’s Lib!

 

 

Dementia: Please Cut Us Some Slack On DoLS

Mixed Dementia, ,

Image result for deprivation of liberty safeguards picture

It was clearly not in Maureen’s Best Interests to let her walk by herself yesterday because the pavement was littered with preparation for the ‘Bin Men’s’ arrival this morning  So last night I stayed by her side during Circuit Training and commented on our route as we walked hand in hand.  I’m seeking to break down our route so that it becomes so familiar to Maureen that she will be able to walk around the block almost with her eyes closed.

I would assert that at this moment in time it is not in Maureen’s Best Interests to seek approval from the Court of Protection for DoLS within our home.   Professional staff who have to work within the confines of the Mental Capacity Act are seeking to move swiftly down that road.  I’m hoping to buy a little more time to see if Maureen can become safe in the community once again.

The Mental Capacity Act and DoLS are new territories for me.  I will be embarking on an eLearning exercise and seeking guidance from a number of quarters this morning. What I’m hoping is to discover is means of maintaining Maureen’s liberty for a while longer.

I have deliberately let our milk stocks run low this morning anticipating that Maureen will accompany me to our Spa Stores again shortly.   She was with me almost as they opened yesterday morning seemingly at home in the company of friendly faces.  If I encourage her to take ‘baby steps’ there is so much more to come from our early morning trips down the road.  Where better to seek cognitive stimulation than in the community? It would be hypocritical for me to see any other way forward after my lengthy professional career as a Community Educator.

I’m not convinced that Maureen’s presentation at the moment is just about the progression of dementia.  I think it is predominantly a reaction to her stay in Ashgrove.   She is terrified this morning of being left by herself. Yesterday, she was afraid that I would put her in the hospital again – her explanation for a recent stay in a Care Home.  I was tempted to tell her that I couldn’t afford to do that as they have overcharged us and still cannot find some missing items of clothing.  She has also told me she doesn’t want another baby: her description of the pain she endured following the work of District Nurses to cure her severe constipation.

Image result for superwoman pictures

There are possibilities for a really positive development this afternoon.  I have engaged a Private Carer for a couple of hours.  She is a Dementia Specialist and  I have tasked her with solving the great underwear crisis. This is not to persuade Maureen from dressing like Superwoman.  I solved that yesterday following advice from our Key Worker.  It is to help Maureen find underwear that she feels comfortable in.  I’m sure my models in M&S will miss me but all good things have to come to an end!

Dementia: Positive Risk Taking In PJ’s Paid Off

minimising distress,

Image result for positive risk taking picture

When Maureen woke in despair yesterday I knew I had to pull out all the stops to try to shift her mindset.  I went for it throughout the day and my positive risk taking paid off with a beautiful climax in the evening.  It took me a while to decide whether to go for it as Maureen sat in clothes that were all inside out with pants on top of her pyjama bottoms.  However, I thought in for a penny and got more than a pound.

Maureen is transformed this morning after seeing her aunt and uncle.  She can’t stop thanking me for taking her to see them.  Seeing her with those who loved and looked after her as a little girl is priceless.  Listening to them they reminisce about the good old days is heartening. The amazing thing is my misreading of a crucial matter – I was frequently trying to steer the conversation away from Maureen’s parents for fear that her relatives would confirm they were dead: Maureen assures me she was on the same mission!

Wearing PJ bottoms paid off earlier in the day when Maureen had popped out by herself.  I heard the locked front door open as I was in the bathroom.  Maureen had scarpered before I could get some clothes on but I soon found her a short distance away being steered back home by some locals who had spotted her unusual attire.  I caught up with them as they were about to phone 101 about the lady with a key in hand who was looking for ‘her friend Paul who would have her dinner on.’

I’m not sure if there is a moral to this story apart from you never know what you are going to get with vascular dementia particularly if you are dressed appropriately.  One thing for sure we need to pop into the local Spa Store more often as the assistants there gave Maureen such a lovely start to the day yesterday.  They helped her to choose which cordial to buy and gave her so much more.   As she offered them a £10 note she had them in stitches as she bantered with me about all sorts of things.

All staff at our local Spa Store are dementia friendly and such support in the local community makes a real difference to our lives.  I’m just wondering if we pop down there shortly if it would distract Maureen from her current focus of us ‘getting a move on or we will miss the bus to take us back home.’

Dementia: ‘Nobody Loves Me: I’m Such a Nuisance’

minimising distress,

Image result for I'm Such A Nuisance PictureWhen Maureen woke early this morning she was very sad feeling unloved and a nuisance.  She was beside herself with her loss of independence and her reliance on others. Her feelings are not surprising when you reflect on such a capable woman now being limited by dementia.  I hope my assurances that I loved her and would do all I could to help her rediscover her capabilities and enthusiasm for life had some impact.

Our Circuit Training went well yesterday and a similar approach is needed to address Maureen’s sadness this morning.   If I pitch it right I have no doubt that Maureen will see glimpses of her old self.  Dementia will mean that she forgets those brilliant moments when she shines but the feel good factor will remain.  Her performance on walking around Royal Court by herself yesterday was remarkable.  She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with her friend from Durham who she had a lovely chat with the other day.

Her performance on walking around Royal Court by herself yesterday was remarkable. She stopped at a lamppost outside the house of a new found friend.  I would speculate that she wanted another conversation with a lady from Durham who she had a lovely chat with the other day.

Circuit Training will take place again today along with another cunning plan.  With luck, I will persuade Maureen to visit a nearby Auntie who looked after her when she was a young child.  Maureen will feel, and remember, the love of this elderly couple and I will get to hear a more about my beautiful wife when she was a little girl: a BOGOF approach to reminiscence therapy!

Just had the first smooch of the day in the kitchen to this one from the Brothers Gibb:

I think the answer from both of us is an emphatic YES.  What I continue to wonder is if Maureen will ever let me lead?

 

Dementia: Dealing With DOLs

Mixed Dementia,

Image result for Deprivation of Liberty Safeguards Picture

After Maureen’s Run Away Day professional staff are considering if they should apply for a DOLs order in her own home.  It can be argued that DOLs is the best way of keeping Maureen safe in the community but there are serious shortcomings of this approach.

While we were out walking yesterday evening Maureen thought we would be in trouble as she had got the impression that: ‘they thought she was stupid and should be locked in the house’.  She had told Girl Friday a similar story: ‘that her cousin had told her that she was no longer allowed out’.

I have decided to address the DOLs concerns with Circuit Training.  We started the programme last night with several walks around the block.  Maureen may not have remembered the route but her pleasant memories of walking hand in hand will remain: feeling matter (Sheard):

Our Training tonight training will be moved up a notch as I let go of her hand for short periods of time and encourage her to stroll around safe areas under her own steam i.e. set her off at one end of a Close and meet her at the other.

If Maureen believes she is ‘stupid’ then we are on the road to Prescribed Disengagement:

With luck ideas, concerning DOLs can remain where they are best kept: on the shelf!

Dementia: Following The Dementia Sherpa Pays Off

Mixed Dementia,

Image result for tHE dEMENTIA sHERPA pICTURE

I have never been fond of the concept of ‘going with the flow’ as an approach to being a Care Partner: it has always seemed too liberal for me.  When I read the Dementia Sherpa’s thinking it seemed more my style.  As we searched for Jamie yesterday afternoon I think Christy’s hand was close by and led me to the distraction that we needed.  Her guidance also helped me to fill in gaps about Maureen’s recent experience in Respite Care.

When Maureen became concerned that Jamie had gone missing again yesterday afternoon I suggested that we should go and look for him.  As we searched around our neighbourhood the little boy that Maureen believes she plays tag with was nowhere to be seen.  She assured me that he can’t run fast enough to catch her but he is great fun to play with.  I tried to reassure her that he was probably in the safe care of his mother but she didn’t think he would be able to find his way home.  Fortunately, as Maureen was becoming increasingly upset distraction arrived before our eyes with one of our neighbours walking with her daughter whilst pushing a pram.  When her daughter addressed Maureen by name I suddenly twigged: she had cared for Maureen when she had been in Ashgrove.

Maureen enjoyed admiring the baby and exchanging with her great grandmother but she clearly had no recollection of her daughter.  Despite several prompts, it soon became clear that Maureen had no recollection of being in Ashgrove less than a fortnight ago.   However, there were two important things that I  learned during our exchanges.  Firstly, Maureen had hardly slept while she had been she had been in Residential Care.  Secondly, there had been an exodus of staff from Ashgrove who have joined the previous Manager at a neighbouring Care Home.

I’m  clear that Fiblets are a part of my style as Maureen’s Care Partner: honesty is the best policy.  I don’t think it is too much to ask for Care Homes to open the books and let their clients know what is really going on in their neck of the woods.  Is it too much to ask that they provide a basic written report on how things have gone while a loved one has been in their care and that it doesn’t take so long for missing clothing to be returned to the owner?

Footnote: It’s rough terrain early doors as Maureen is on my case about her car and me taking it out and leaving her at home.  I might have to get on my bike today!

Dementia: A Change Of Perspective

Mixed Dementia,

 

Image result for Seeing Things Differently Picture

I think I have been looking at things from the wrong perspective as I have tried to fathom a way forward on this hazardous journey.  Firstly, I have been focusing on Maureen behaviour rather than my reaction to her presentation.  Secondly, I have been concentrating on the view from our lounge rather than reflecting on the beauty of our back garden.  Yesterday,  two people offered me another route on this journey that might just help us return to the straight and narrow.

Christy Moore posted Validation Therapy& Therapeutic Fiblets in Action with real life examples of how to deal with some of the very issues that  Maureen presents on mosts days.  I found her suggestions on how to deal with ‘Wanting To Go Home’ particularly helpful.

The plans from Daniel our architect on a Sun Room as an extension to our house helped me to see how our usual view has been from the wrong perspective.  How lovely it will be to spend our days overlooking our beautiful rear garden rather than the bungalows that are across the road.

If I begin to focus on my behaviour rather than Maureen’s, and we concentrate on looking out of rear windows this journey might just become a little easier in future!

My perspective on yesterday was that we had a really good day:

  • Girl Wednesday was back on duty after 12 weeks off sick
  • Maureen passed her physical with the GP.   His compassionate approach was, as always, person-centred.
  • Maureen’s Care Coordinator discharged her from the Memory Service back into the care of her GP.
  • Maureen was happy and contented for most of the day.  She wondered why the Care Coordinator and her colleague had paid us a visit.  She was puzzled why they hadn’t rewarded us with a prize following their compliments about our rear garden.
  •  We had a lovely afternoon walk around our neighbourhood.
  • We slept well together for most of the night apart from one minor incident when Maureen thought there was a leaking gas pipe in the bedroom.

 

Dementia: A Run Away Day

Mixed Dementia,

Image result for Dementia Assessment Needed PictureI  am requesting an urgent review of our Support Plan this morning after Maureen chose to run away yesterday, rather than have an Away Day.  She slipped off from a carer early afternoon and a couple of hours later declined a short car trip preferring to walk around the local area almost to the point of exhaustion.  Her behaviour during that time exceeded anything I had seen before: vitriol towards me was par for the course but trying to get into neighbour’s cars and homes were new territory.  Thankfully, even those we had never met before grasped that Maureen was unwell and reacted to her compassionately rather than summoning the Police.

It may have been a blessing that the Emergency Services were unable to respond to my request for assistance; their presence could have taken Maureen down an unhelpful path.  If she hadn’t turned round from her mission to walk towards Cleethorpes an ambulance crew were scheduled to intervene.  That may have led to a lengthy period of assessment that would merely have confirmed that her presentation had changed or her condition had progressed.

The night has been far from peaceful with Maureen waking around 2 am convinced that ‘they are trying to put her into a black box.’  She fails to understand ‘why they are trying to get her as she has no money.’

As soon as lines open I will seek a physical review of Maureen’s condition with her GP.  It is possible that infection is creating havoc with her presentation.  I’m also concerned that she appears to be losing weight, as yesterday’s carer was keen to point out.

I’m hoping that our Key Worker will be able to put in some additional support to see if we can help Maureen settle down.  Her Care Coordinator from the Memory Service will be here at 3.30 pm ‘to close the case and refer her back to her G P.’  I think a review of that decision would be appropriate the way things are going!

I just couldn’t resist this after yesterday:

Dementia: An Away Day Beckons

Mixed Dementia,

Image result for Respite Break Dementia picture

If things go according to plan today we are going to have another Away Day.  We plan to be chauffeur driven to visit family in Nottingham.  An Away Day with family is a great way of having a time off from my caring role.  All we will have to cope with tomorrow is a little tiredness; rather than clearing up from the aftermath of Maureen’s stay in a Care Home!

Unfortunately, yesterday did not go according to plan as I had overlooked that Girl Monday has moved to Tuesday.  Now heavy with child ‘Maureen’s Hairdresser’ has reduced her hours and no longer works Monday’s.  However, she will be here on Wednesday and I’m hoping that can be a Pamper Day.

Maureen will love going to Nottingham today to nurture her younger sister.  I’ll be happy to take a back seat while the two of them catch up and chat about the good old days.   I  only hope I have got my days, and who will be where and when, right today.

OMG, the odds have just lengthened on us making Nottingham.  Maureen has just told me she is aiming to ‘get back into hospital as no one is looking after her here.’  It’s going to be another interesting day!

Footnote: the amount of sleep I’m getting continues to improve as you will

Bad News: Maureen says it is too cold to go to Nottingham so no Away Day Today.

Even Worse News: Girl Tuesday has been taken to hospital following a fall at a previous call – I hope she is OK!

Dementia: ‘They All Know Us!’

Mixed Dementia

 

Image result for citizen khan pictures

We would not be able to cope without the support of lots of people who live in our vicinity.  I often adapt a Citizen Khan quote ‘they all know us’ to summarise our notoriety in our neighbourhood.  What the locals know is that Maureen has dementia and we both need their support on a daily

Local shop assistants are a great help even when they have customers waiting to be served.  We often pop across the road see our friends in local stores who are all willing to give us time and consideration even when we have just called in for a chat.  If I’m out ‘wandering’ by myself the first question locals ask me will generally be associated with Maureen’s welfare.  Whenever she slips out without me noticing it would be unusual if someone doesn’t tip me off that she is out by herself: frequently they ease her back to the safety of her own home.

If ever I’m struggling with her presentation I’m spoiled for choice over whose door I can knock on for a little distraction and redirection.  I can honestly say I have never been turned down at any time of day or night in my hour of need.

When I spotted Hattie and her mum across the road yesterday I thought it was an opportunity too good to miss.  Maureen adores the company of little children and loved having a toddler on our drive.  It’s a shame that both of our families live so far away so I think we might ‘adopt’ Hattie and her brother.  He wasn’t around yesterday as he had gone to visit relatives in Coventry.  If we had known we could have asked him to pop in and see some of ours!

Maureen greeted Girl Sunday with ‘we’re seeing a lot of you lately’ – possibly remembering that she had been with us 24 hours before.  They did some sterling work tidying up while I went to top up our provisions for the week.

Following a siesta, we had a lovely afternoon as Maureen watched me pottering in the garden through the patio doors.  She popped out occasionally to assist and praise my efforts.

With vascular dementia, you can never predict how the day is going to turn out but it was good to enjoy the ‘Day Of Rest’ yesterday after a very busy Saturday!

I completed drafting the above just after 9 pm last night as Maureen lay fast asleep on the sofa.  I’m back on the keyboard shortly after 6 am, so I’m almost sticking to the regime I outlined yesterday and how the last nine hours went are outlined <HERE>.

I’m going to suggest that Girl Monday offers one of her Pamper Days this morning.  She has an excuse to guide Maureen into the shower as she is now half-way into her pregnancy and finds it difficult to bend over the sink.  I’m hoping my ‘Silver Lady’ will look a million dollars when I return from the Leisure Centre – attired in the outfit I have left on a hanger.  With her hair such a beautiful shade now I called up David Soul for her on YouTube yesterday: