Category Archives: General

Dementia: Maureen’s Insight and Confidence Was Returning

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This post was written yesterday before this morning’s stark reminder  of Maureen’s vulnerability.  She is fast asleep again now, and didn’t mention the incident when she was awake earlier.

Maureen has shown some really positive signs in the last few days.  I am not wanting to get too carried away but on several occasions she has shown remarkable insight into situations.  The other aspect of her behaviour that is worth commenting on, is the confidence she now has about talking about her condition. I think this is evidence that the diet that the Head Chef is providing is really helping: so androgogy will remain on the menu.

Yesterday morning convinced me that as Head Chef there is no need to change the menu and we are ‘cooking on gas’.  We went for an early morning walk and bumped into a friend along the way.  As we stood chatting, Maureen joined in the conversation with some gusto.  She said all the right things and joined in with the jocular nature of the exchange.  At one stage Ron said to Maureen: ‘you are so much better than the last time we saw you’.  Any observer of Maureen would not have believed that she had suffered stroke, and been diagnosed with dementia.  But it gets better than that.

As walked on from Ron Maureen gave a fascinating insight into her condition.  She said she would not have known Ron if he had been on the other side of the street.  The trigger for her memory came when he spoke and she recognised his voice.  I took my cue from this to confirm how we use all sorts of tools to remember things.  

Maureen found this analysis very reassuring, and we walked on chatting away.  When we returned home things got even better.  We separated for a while on returning home; busying ourselves with our own pursuits.  When I caught up with Maureen a short while later she was bursting to give me more good news.  She had been in the dining room looking through the book shelves, and found ‘her books’.  That had led her to realise how they had got here, and that this was where she lived.  Once again, like a couple of days before, laughter took over when she revealed that she thought someone had stolen them.  Then I thought ‘in for a penny in for a pound’ and recounted her thoughts in Nottingham about the gay man who has sorted out the underwear crisis: that did it.   Maureen roared with laughter for quite some time – rolling about on the sofa.

I reassured her that it didn’t really matter if she was sometimes unsure who I was:  the most important thing was to know I would always be here for her.

Footnote: I have deliberately substituted ‘is’ for ‘was’ in the  title of this post because I have no idea how Maureen will be today.  She seems exceptionally quiet and pensive.  I hope that  sleep will have a healing impact on any troubling thoughts that are rumbling around her head.

Dementia: TINA Now

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After the events of this morning there is no alternative but to put some serious issues on the table. Maureen’s scream followed spending time with her eldest son yesterday.  His visits have often led to incidents of extreme distress, and confusion, about who is sharing Maureen’s bed.

Without going into detail Maureen’s previous marriage was a disaster.  Ian’s presence often leads Maureen to think his dad is back on the scene again.

Unless we all take account of this association, and her fear of men, then we will continue to create further distress for Maureen.  Therefore, anyone who drops Maureen off at a Day Centre where there are lots of men needs their head examining.  Particularly, when they know Maureen’s history and her constant anxieties concerning men.

I will need to take advice how to handle  this matter as sensitivities are involved.  It is time for some serious talking about the best way to support Maureen.  I am fed up with my best efforts being undermined by some family members,  Certain people ‘don’t get dementia’:  they continue to bombard Maureen with questions, and dump bad news during phone calls.  We’d almost be better off if they didn’t know our number or where we lived: often Maureen’s reality.   However as they do pussy-footing around on my behalf is not the answer.

Dementia: A Stark Reminder

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It’s three in the morning and I am posting as part of my strategy to calm down.  As I turned in bed half an hour ago, and opened a drawer on a bedside table, Maureen let out a deafening scream.  When I mentioned ‘I was getting another antibiotic’ she said: ‘I didn’t know who it was’.  The scream was so long, and loud, I am still emotionally shaken by the incident.

It is fortunate I am seeing two support staff in the next couple of days: Admiral Nurse tomorrow, and social worker the day after.  They both need to understand how delicate Mauren is, and the fears that continue to haunt her.  My understanding is that it is far too late to deal with events in Maureen’s life that have caused this ongoing fear that something dreadful is going to happen to her.  One thing I know is  I have no intention of mentioning the incident when she wakes this morning.

When these incidents have happened in the past I have struggled to get back to sleep.  Perhaps in a strange sort of way it is a stark reminder to me to try to ensure that our new support staff are aware of the how delicate Maureen is.  They would have no idea that beneath that confident persona is an extremely frightened child.  I can fully understand how professional staff have taken in by Maureen when she is in good form and full flow.

I best switch this machine off and see if music and some basic household tasks help me calm down.  It worked the last time.  I can always catch up on sleep later in the day.

Dementia: Time To End the Exploitation of Care Workers

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This afternoon Maureen and I bumped into a woman who used to be one of the carers from the Agency.  We hadn’t seen her for a while and she said: ‘you won’t be seeing me again, as I have just handed my notice in’.  Sue was one of the better carers, and we would happily have had her as one of our regulars, but that never happened.  Until I became very firm with the Agency a couple of weeks ago, they sent a succession of carers on Wednesday’s: almost a fresh face every week.

Sue told us the reasons for her resignation were not: the poor hourly rate; the lack of travelling expenses; or the fact that she was on a zero hour contract.  Her reason for giving in her notice was that she was often asked to work for a couple of hours in the morning and go home before resuming her work a few hours later.  She was also fed up with continually being phoned up and offered a £10 bonus to work a few hours on her day off.  She was even told if she didn’t  bail them out there was a danger the Agency would be placed in ‘Special Measures’.

Yesterday I happened to be down by the headquarters of our Agency.  Large banners were outside their offices trying to recruit new staff.  The terms and conditons on offer included: regular contracts, training, and travelling expenses.  I just wonder how on earth any organisation can get away with such misrepresentation?  I also wonder how Local Authorities are able to place lucrative contracts with such dubious organisations?  I think the only solution is to take such vital services back into the Public Sector.  Care in the community is fine but it should be under the auspices of Local Authorities.

Dementia: Getting To Know You

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There are two reasons why Charlotte and Maureen hit it off so well over the weekend.  Firstly, Charlotte understands dementia, and gave Maureen the time and space to settle in her company. Secondly, I stayed around to help ease Charlotte into working with us.

In retropsect I think we came up with an excellent approach to a carer’s first visit. I deliberately stayed in the background early doors.  Looking out of the kitchen window, I saw that the two of them hit it off from the moment they met.  Within minutes smiles, and laughter, rang out around the garden, as the remaining washing was placed on the line.

As the morning progressed I left Maureen to tell Charlotte her story.  I also opportunistically used events to help Charlotte see Maureens functional capacity first hand.  Maureen approach to trying to find my missing antbiotics gave Charlotte direct evidence of Maureen’s cognitive function.

I don’t think Charlotte had time to read Maureen’s outdated Care Plan.  I deliberately threw her in at the deep end, and helped her to stay afloat.  On many occasions over the weekend, I saw her take opprotunities to encourage Maureen to open up.  I overheard her using the photographs, on the wall in the dining room, to encourage Maureen to talk about her family.

I would suggest that my ad hoc induction process, and I have only shared part of it, hit the spot.  It was far more effective than any written document created by me, or whoever.   Charlotte knows far more about Maureen than professionals who have been coming here for quite some time.  In the short time she was with us she cajoled Maureen to tell ‘her side of the story’.  It is rather sad that her senior role within the Agency may mean that we may not always enjoy her company.  However, I have feeling that her brand of care will be replicated throughout the Agency.

Dementia: ‘ We Are Not Singing From The Same Hymn Sheet’

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I have come to the conclusion that there is a significant difference between how Maureen and I are approaching dementia, and  those who claim to be supporting us on our journey.  In simple terms ‘we are not singing from the same hymn sheet’ as the medics and professionals.  I think the same could  be said of most of our family, and friends.yes, no, maybe, I do not know - choice or uncertainty concept - colorful sticky notes on a cork bulletin board Stock Photo - 10299826

As anyone who reads this blog would know I am relatively new to being a Care Partner.  Much of my approach has been developed by trial and error.  Friends on Talking Point have also provided  sound guidance.  I have also read  quite a lot about dementia, and attended various courses.

My professional career in life-long  leaning has also influenced my approach to being a Care Partner.  There is little doubt that andragogy,  is the large umbrella under which most of my approach shelters.  This is rather different to the approach of others which appears to be based on a pedagogy of the oppressed.  In simple terms the former starts from an understanding of the individual: the latter focuses on filling an empty vessel.  My approach concentrates on working alongside Maureen on her agenda: the other conductors try to get her to sing their songs.

At a practical level the following list illustrates the thinking  behind my approach to being a Care Partner to Maureen:

  • Maureen’s dementia is not a mental health condition.
  • The brain can find avenues to re route or repair.
  • We use coconut oil in our cooking on most days.  Some othere helpful supplements are included in our diet.
  • We take regular exercise.  Maureen has developed her own circuit in our garden.
  • We buil cognitive stimulation into daily living.
  • Humour and lots of laughter need to ring out from our household.
  • We avoid activities that separate and label participants.
  • We try to carry on as normal .
  • I  never give Maureen any bad news.
  • To ask others to keep phone calls short, and never ask questions.
  • I never ever say to Maureen: ‘Do you remember?’
  • I try to talk less and listen more.
  • i try to grasp Maureen’s reality at any particular moment in time.
  • I play music that has meaning for Maureen.
  • I try to simplify, simplify, and simplify our lives.

I am sure I have missed out one or two things from the above list.   After all our approach is a ‘work in progress’, with an real emphasis on developing my listening skills.  If I don’t hear what Maureen has to say; how on earth will I ever comprehend her reality?

Footnote:  I will always be eternally grateful to those secondary school pupils in Cleethorpes and Grimsby who had the pleasure of my company when I worked as a Supply Teacher.  I frequently walked into a classroom full of puplis who I had never met before.  Sometimes I had to face the music using my own resources; as lesson plans and resources were mysteriously missing.  Generally, my audience consisted of  30 odd pupils who were  ‘up for it’: supply teachers are generally seen as ‘fair game’.  They taught me to improvise and think on my feet. What better preparation could I have had for my role as a Care Partner?

 I often smile when I occasionally meet one of my old adversaries in town.  I want to say: ‘thankyou for what you taught me’. Then I stop myself, and think wait a minute: ‘they thought I was mad then; mustn’t let them think they were right’.  After all my role as a supply teacher was to fill up empty vessels.

Dementia: We’ve Scooped the Jackpot

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Our luck came in yesterday and we’ve scooped the jackpot.  They say luck runs in threes so I decided to buy a ticket for the Lottery.  Yes and our lucky streak continued as soon as Charlotte walked through our door. Immediately, I realised that we had a winning ticket, to go along with the two very small wins Maureen had received in the past week or so.

I am very optimistic that we have a winning team in place now.  With Chloe,Gale and Charlotte here on a regular basis there is so much potential to move forward on our journey.  Once Charlotte is inducted into our approach to dementia, we are in a great position to make further progress.  Lo and behold Maureen has fed some great ideas into the melting pot this morning regarding my 70th birthday.

We are undecided on the best way to celebrate  the start of my 8th decade.  That uncertainty is a real positive, as it brings into play a little project that will be a means of providing cognitive stimulation.  Our tentative plans are for a scrap book approach on where to celebrate this milestone.  What better on these cold and dark nights than planning a holiday?

That lottery ticket remains in my wallet – unchecked.  We have already won with Charlotte on board, and Maureen progressing so well in the last few days.  Maureen is such a happy and positive woman at the moment, we must be doing something right: continuing in our own peculiar way.

Dementia: ‘Early Onset -You What?’

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Charlotte breezed into our lives at noon yesterday and struck up a positive chord with Maureen as soon as they met.  Maureen greeted her with a lovely smile, and they were off as if they had known each other for a life-time.  I stayed around for the whole time that Charlotte was here to provide an ad hoc induction to working with us.

As the afternoon progressed there were lots of opportunities for Charlotte to see Maureen in a functional mode.  In some ways it helped that my antibiotics had gone missing.     Thsi gave Charlotte a chance to see  the absence of logic and rational thought first hand.  It also gave her a stark introduction into Maureen’s ability to recall.

Charlotte stared in disbelief as Maureen repeated the same questions time and time again.: ‘what type of box were the tablets in – when did I last have them- why didn’t I phone the doctors- were they in here, there, or any where?’ and on and on. She soon realised that the information that she had been given about Maureen was sketchy, and out of date.

I have to take some responsibility for only giving Charlotte basic information, when she phoned up to introduce herself the day before.  That is why I stayed around for her first visit: I will do much the same today.  What concerns me is the scant information that social services pass on when they are referring clients.

It is possible that Maureen may have settled at the Day Centre on Wednesday had they known a little more about her.  All they were given were name, rank and number.  I think this is completely unfair on all concerned and is something I aim to address.  Part of me thinks I shouldn’t have to but I will to protect my wife.

One of the outcomes of yesterday afternoon is a confirmation of my Mission Impossible Blog.  Maureen remains eloquent, and can confabulate with the best of them. Therefore social services classify Maureen dementia as early onset.  Anyone who sees her in functional mode, would smile at such a description of her capacity: as Charlotte did.

Dementia: Continuing In Our Own Peculiar Way

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I posted the  blog below – Our Own Perculair Way – two weeks ago.  A lot has happened in the last 14 days as Maureen continues to make amazing progress.  Early this morning she has been a revelation:  telling me how she is trying to improve her memory by recollecting events from the past.  It is amazing how lucid and funny she can be: her sense of humour is still wicked as you will see from my earlier post.  If you met Maureen in the street you would never believe what she has been through in the last few years.

Today will be an interesting test of her ability to recall.  If she remembers that we have been chatting about contacting our Songbird that will be really positive.  The experts might well question this, as I am dealing with her emotional memory.  Hey who cares as long as she enjoys speaking or writing to Maeve.

Our Own Peculiar Way

We all have our own ways of coping when dementia is impacting upon our lives.  Maureen’s approach to the condition is her choice: it is her life.  If she wants to continue with her belief that she: ‘used to have some problems with her memory’; that is her right.  What would I gain by trying to ram home that she has dementia, and she should listen to the ‘experts’ on how to conduct her life?  Kate Swaffer has some harsh words on that approach and labels it ‘prescribed disengagement’.

I also have my own approach to being a Care Partner.  It has been fashioned by reading and listening to what others have to say about the condition.  I am greatly indebted to the many contributors to Talking Point who share their experiences so openly: they are the experts.

So Maureen and I both have our own approach to our journey with dementia.  That is where Willie Nelson and EmmLou Harris come in because their rendition of ‘My Own Peculiar Way’ opens the door on a good focus for the weekend, and these dark nights.

If my ballroom dancing memory serves me right Willie and EmmyLou are singing to the tempo of a Rumba.  Maureen and I fashioned a good version of Rumba in our ballroom dancing days.  As I have mentioned before we have several ‘dance floors’ in the house.  We also have DVD’s to remind us of our little routines.  Guess what I will be suggesting to shorten these dark nights?

What have we to lose by continuing in our own peculiar way?

Dementia: ‘They Don’t Think I’m The Full Shilling’

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Yesterday as I sat blogging I heard Maureen in fits of laughter in the next room.  It went on for some time, so I crossed the landing to see what had tickled her fancy.  Eventually, she stopped rolling about with laughter and told me of her cunning plan.   

She often thinks that people are trying to prove that she is mad.  Her reference to not being ‘the full shilling’ clearly came from the dreadful experience she had on Wednesday.  Once she stopped gigling away: she shared her plans.  She said:  ‘I am going to tell them there’s something really important they need to know about me’.  Then she revealed all : ‘I’m going to tell them I have got no knickers on’.  Sorry about the pun!

It would be really interesting to see what they made of that!