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: ‘I Want My Life Back’

Mixed Dementia

Image result for I Want My Life Back Picture

There appears to be a consensus on the need to cut us some slack and allow us to catch up with loved one’s next week.  I may be wrong and ‘Ginger’, as Maureen calls our Key Worker. will soon tell me this morning. He will be here at 10 ‘o’clock this morning; that will please Maureen as she is always keen he keeps a watchful eye on how we are doing.

There is an immediate point of concern in my opinion.   As Maureen put it on retiring last night ‘she hasn’t got a life of her own anymore, as she is being told what to do all the time’.  Maureen frequently says she ‘wants her life back’.  I fully understand why my very intelligent wife hates the loss of her independence.  That is one of the reasons I have been requesting a gathering of the Multi-Disciplinary Team.  Why should she have to wait for her concerns to be addressed and continue being treated in her words ‘as if she is stupid’.  My campaign for an immediate reflection on how she is being treated will continue.

You will be pleased to be reassured my cyber friend Kate Swaffer there remains no room for ‘Prescribed Disengagement‘ here!

Image result for Kate Swaffer picture

Dementia: Please Cut Us Some Slack!

Mixed Dementia

Image result for Cut Us Some Slack Picture

Today marks the third anniversary of Maureen’s stroke: the culmination of a catalogue of errors.  It was three days after presenting at Accident and Emergency at Grimsby Hospital before she was sent to the Stroke Unit at Scunthorpe. On arrival, we were asked ‘why have they sent her here?  It’s too late for us to do anything’.  The window for thrombolysis had long been shut and our journey was rather pointless.  When I look back this was the final straw in missed opportunities where few had been interested in listening to my concerns about Maureen’s faltering memory.

Maureen now has a diagnosis of moderate to severe dementia.  She has recently been confronted with the nature of her condition: despite choosing to be in denial for three years.  I’m not sure anything has been gained by trying to bring her out of denial – the process has certainly scared the living daylights out of her, as has preparation for the Best Interest Meeting concerning her future care and accommodation.

Sometimes Maureen’s reality is I’m seeking to have her taken in a Care Home because I want all of her possessions for myself.  My reassurances fall on deaf ears when the going gets tough. Therefore, I am requesting that we are left alone until Monday 13th of March and the procession of professional staff to our home is temporarily suspended.  The one exception being our Key Worker who Maureen calls ‘Ginger’ as she likes him to pop in to see how things are going.  We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

Monday the 6th of March is my brother’s birthday.  He has Alzheimer’s and is on Continuing Health Care in a Nursing Home.  Three days later it is my mother’s birthday. She has vascular dementia and is in a Care Home.  Next week needs to be set aside so that our chauffeur can take us to see our loved ones.  Dementia is such a significant factor in our lives and a compassionate approach is needed at this moment in time, rather than trying to bounce us into the procedures of the Mental Capacity Act!

Footnote: This post is being forwarded to all professional staff who are providing support to us on this journey.  I will also copy to Maureen’s G P as I seek his permission to give her prescribed medication covertly.  The ongoing battle to persuade her to take tablets is draining!

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Dementia: Action Man Returns

Mixed Dementia, Uncategorized,

Image result for action man picturesMaureen often asks me: ‘what’s the plan Action Man?’  So I took on the mantel yesterday in an attempt to move things in a positive direction.

Once it was confirmed that Maureen had a UTI  I  encouraged the Practice Nurse to outline a formula for recovery:

  • Antibiotics to be taken for a week.
  • Eight glasses of water to be drunk daily.
  • A shower or a bath to be taken three times a week

This formula complemented our early morning pledge:

  • To sleep together in the marital bed at night.

Girl Monday morning also gave me some much-needed coaching:

  • To stop giving Maureen options as she can no longer make choices.

The support we received from professional staff yesterday was of a really high standard.  Early in the morning, a Duty Officer from Social Services contacted me as our Key Worker was not working.  Within a short period of time, she managed to secure and arrange two-hour afternoon carer sits for the remainder of the week.  The added bonus being that this additional support would be with known faces.  Throughout the day other professional staff weighed in with support and advice.

It will take a couple of days before Maureen’s medication starts to kick in.  With luck, things will then move in a positive direction – providing ‘Action Man’ remains well enough to deliver the goods!

Dementia: Oh What A Night

Mixed Dementia, ,

Image result for Oh What A Night Picture

Yesterday morning and afternoon had been very challenging as I tried to deal with Maureen’s constantly changing presentation.  As the evening progressed and none of my normal routines were having any real effect I sought advice from staff on the Konar Suite.  I often find that the sound of a soothing voice gives me the impetus to change my approach.  After my phone conversation, further music onYouTube had a positive effect for a while before Maureen handed me a Wild Card.

There were no stars in the sky at 2 am as I tried to distract Maureen’s, yet again, by responding positively to her request to get some fresh air.    We didn’t stay out for long as there was a cool wind and we were both tired.  However, it took a further half an hour of YouTube on our return before I was able to persuade Maureen to accompany me to sleep in the marital bed.

This morning I’m hoping that we will be able to establish if Maureen has a UTI.   A recent purchase should help to preserve Maureen’s dignity as she seeks to provide the necessary sample.  Once again Girl Monday/Friday hit the nail on the head on her last shift encouraging a focus on protecting Maureen’s dignity and independence.  I’m so fortunate that I have sat next to Girl Monday/Friday (Nellie) for almost three years now: she is my immediate mentor when it comes to Maureen’s care.

We are out of the blocks with a meeting of the Multi-Disciplinary Team on Thursday morning with only Mental Health needing to confirm their availability.  The Best Interest Meeting is still some time away and in the meantime, we need to ensure that our approach to Maureen’s care is appropriate and cohesive!

Dementia: Time For Some Straight Talking

Mixed Dementia, ,

Image result for Time for straight talking graphic

This is no time for beating around the bush: Maureen is on a downward spiral.  No one knows what is behind the increased level of confusion and the attendant ongoing challenges she is presenting to me and carers   Anyone who suggests it changes from day to day should witness this: it’s frequently within minutes that our status changes from friend to foe.  What I can say without fear of contradiction is that I’m very tired and that a reappraisal of our situation is required.  That is why I am requesting an urgent meeting of the Multi-Disciplinary Team.

I anyone else tells me I’m ‘doing a good job’ or suggests the solution is to ‘distract and redirect’ my response is likely to be in Anglo-Saxon.  As much as I appreciate compliments it is a time when action is needed rather than words.  We need to review whether the focus of professional input along with our Care Plan reflects where Maureen is in the progression of her condition!

From immediate effect, anyone who has or might be carrying an infection will not cross our front door. I took a chance last week with two individuals who may have brought the lurgy into this household and Maureen now has a heavy cold!

We would not cope without this guy at the moment:

It’s 4.30 in the morning and ‘Rudolph The Red Nose Reindeer’ is in great voice.  Don’t worry my cyber friend ‘Amazing Susan Macaulay‘ (pictured below):Image result for Susan Macaulay Amazing

I have videoed my ‘Singer Lady’ but as you know safeguarding issues prevent me from sharing her lovely voice on here.  If only you could see her joy when the Three Tenors are on it would bring tears to your eyes:

She is singing in Italian at the moment: it has to be‘Incredible Maureen’ from now on!

Dementia: Feeling Neglected and Stupid

Mixed Dementia, Uncategorized,

Image result for Feeling Neglected and Abused Elderly Woman Picture

Several people heard Maureen giving it to me yesterday and a common response was ‘I can hear what you are up against.’  I appreciate their empathy but they have no idea what it has been like lately: particularly during Storm Maureen. What they also fail to understand is their contribution to Maureen’s distress.  A frequent question from Maureen is where are my family; why don’t they come to see me?  The other burning issue for her is ‘why are people treating me as if I am stupid?’  This is her reading of how most professional staff are dealing with her.  I am at one with her on both issues.

Last night I asked those family members who are in contact to visit more often.  They assured me they will do their best to address Maureen’s feelings of neglect.

On Monday I will request an urgent meeting of the Multi-Disciplinary Team to address our concerns.  I will also suggest that certain professional staff not to darken our door until we have met.

Maureen was in great form at our YouTube Party from 2 until 4 this morning – I wish I could share pictures how much she enjoyed herself – my wife was back for those precious few hours.  She is still here after further sleep three hours later looking forward to an omelette full of good things to drive away any signs of a water infection.

As she has always asserted when she has been in a Care Home ‘those people are behaving as if they are stupid because they are being treated as if they are stupid!’

 

Dementia: The Storm Rages On

Mixed Dementia, ,

I thought I had weathered the worst of ‘Storm Maureen’ by 2.30 am when Maureen had dropped off to sleep.  Music had quelled the initial onslaught with songs from Peter, Paul, and Mary on YouTube:

The focus of the storm changed from thieves stealing Maureen’s car to searching for her missing mum when she woke around 3 am.  Two hours later she was ranting over the need to move out as everyone was ignoring her here and the house was too cold.

I’ve decided to move out myself this morning to Cleethorpes Leisure Centre, as I need to rejuvenate myself in the Spa and the Sauna.  It’s fortunate that Girl Friday is on duty again this morning: Maureen desperately needs one of her Pamper Days.

It wouldn’t need much thought to work out which song would be on my Good Music page today.

Update: On taking Maureen her first cup of the day at 7.45 am she has a simple question: ‘where is this big family of mine?’  She has forgotten her son was here two days ago but she knows that her visitors are now few and far between – a familiar tale for those who have dementia!

Dementia: Seeing The Light

Mixed Dementia

Image result for fibre optic lamp working modelI had a surprise birthday present yesterday; a fibre optic light I had forgotten I had ordered on eBay.   It was a cheapie and no instructions were included, so it took me a while to get it working.  From what I have seen so far it might just provide soothing light; even a  diversion when the going gets tough.

When I came downstairs yesterday morning I saw something I have possibly been reluctant to see.  Maureen told me that she had ‘made me a birthday card but couldn’t remember where she had put it’.  Then the reality check was before my eyes on the dining room table: a used envelope on which she had written ‘HAPPY XXX’.  Inside the envelope was a used sticky notelet book.  When I thanked her for the card she broke down and said ‘I can’t write any more’.

Half day closing yesterday at our Medical Centre meant that it wasn’t possible to check if Maureen has a UTI.  Even the collection of the sample caused problems with Maureen telling me ‘that Lady ( Girl Thursday) had made her feel a fool’ by correcting her approach to water collection.  I’m hoping that things go a little more smoothly in the morning and we can check if antibiotics are needed.

I’m beginning to wonder if we are now trying to shut the door after the horse has bolted.  It is possible that professional staff encouraging Maureen to widen her social circles and become more active could well be too little too late.

I think it is important for me to remain focused on minimising Maureen’s distress.   Those who have decided the Best Interest Meeting is the way forward could well be contributing to Maureen’s decline by scaring the living daylights out of her.

 Posted live at 2 am as ‘Storm Maureen’ has been raging for an hour!

Dementia: Just What The Doctor Ordered

Uncategorized

Image result for madhyamaka kadampa meditation centre

Yesterday, I took the initial steps to establish a regular day off from my role as a Care Partner for my wife. My first move was to explore the possibilities of Maureen going to a local Care Home from 10 am until 5.50 pm on Wednesday’s.  Then I requested that one of our Care Agencies resumed a regular night sit from 10 pm until 7 am.  Following a visit to our other Care Agency, I’m relatively confident that it will be possible for them to fill the gaps.  This will mean that I will be able to be free from my caring role from 9.30 am on Wednesday until noon on the following day. I’m hoping that this regular package of care will be in place by the middle of March.

The prospect of 24 hours every week at Madhyamamka Buddhist Meditation Centre (pictured above) fills me with joy.

A regular break from my caring role is just what the Doctor Ordered.

I couldn’t wish for a better present on my 71st Birthday!

It isn’t important that my other plans for yesterday didn’t really come to fruition.  We had a lovely time with Maureen’s son and that helped to distract her from the bad vibes of the previous day.  There was lots of redirection during the day as we shifted our plans to take account of Maureen’s energy levels.

I think it would be fair to say she was wiped out by the time her son left us to travel back to the West Midlands: she was no longer able to conceal the level of her confusion and fear.  Before she took to the sofa early in the evening she had been shadowing me; in tears constantly telling me how frightened she felt. This is not what the doctor ordered: a significant dip in her condition!

Dementia: Taking The Bull By The Horns

Mixed Dementia, ,

Image result for Taking The Bull By The Horns PictureI am planning to go for it this morning with an emphasis on distraction and redirection.  In the heat of the battle yesterday, I forgot a basic that any apprentice Care Partner should have grasped by now.  For a while, I foolishly tried to reason with Maureen to establish that I was a good guy.  Where on earth I expected logic and reason to appear from after all this time I will never know.   Such qualities have long gone and when abject fear took over the going got really tough.

I should have known that two strangers from the Local Advocacy Service probing Maureen about what she would do if I wasn’t here would spell trouble.  I could have anticipated that fear would eventually lead to her turning on me as the driving force for the probing questions. However, I was taken aback by the force of Maureen’s reaction and failed to apply distraction and redirection techniques.  It took telephone coaching to put me back on the straight and narrow and for Mrs Dementia to be put under pressure and for glimpses of my loving wife to return.

So this morning I have a cunning plan to take the Bull by the Horns.  Maureen’s son will be here around 10 am and I going to involve him in the Birthday Mission.  If all goes well we will go into Grimsby to help Maureen solve her inability to access her own money.  Our first call will be her bank so she can cash a cheque and order a new pin number for her debit card.  Then she will have cash in her purse: a common complaint is that she hasn’t tuppence to her name. Our next call will be for her to buy the ‘old man’ a card and a present for his 71 st tomorrow.  If she wants to get me a surprise I can leave them to it and wander around Grimsby by myself for a while.

If my cunning plan doesn’t work I can always play ‘More Than Words’ tomorrow morning as a reminder of the good old days:

This was OUR SONG in the early days of being together: if Mrs Dementia surfaces tomorrow she can Take That!

The context for my bright ideas this morning is that Maureen has been wanting to go home since 3 am.  She wants to live with her parents again, where there are no thieves stealing her clothes.  I have listened to her concerns and tried to put her mind at rest to no avail.  I attempted to distract her by talking about the impending visit of her son; with unfortunate consequences.  I listened to a diatribe about him for quite some time.  She doesn’t know ‘what he looks like and knows nothing about him as he never comes to see her.’ Her disappointment about the diminishing level of contact with her family is palpable.  She has been pleading with her daughter who died some time ago to come back, as she was a real friend.

Around 5 am I decided to give Maureen some space – hoping that the passing of time would lead to a change in her presentation.  My hunch paid off and by 6 am she came to tell me: ‘she didn’t know what she would do if I wasn’t here’.  It will be interesting to see how she presents when her son arrives.  One thing for sure, I will need our night sitter on duty tonight so I can try to catch up on a bit of shut eye!