Dementia: ‘No Pain, No Gain’

As a young lad I wanted to build a Charles Atlas type body.  For a while I went weight training several nights a week in an effort to enhance my slim build.  Like most body builders we lived by : ‘there’s no gain without pain’.  This phrase takes on particular resonance this morning.

I have an appointment at a Pain Management Clinic this afternoon to address the problems with my left shoulder.  It has got to the stage where painkillers are needed before it is possible to get to sleep at night. My legs aren’t too clever either, at the moment, with muscle pain waking me up early on most mornings.  I am hoping that this afternoons appointment spurs me on to stick to a schedule of exercises that eases my current levels of discomfort.  I know I haven’t been putting the work in and there’s ‘no gain without pain’.

There is another area where there is ‘no gain without pain’ but this time at an emotional level.  The time has come for a family discussion about the most supportive way to communicate with Maureen.  There are some members of the family ‘who don’t get it’.  Their communication with Maureen continues to be clumsy, and is causing distress.   Any conversation that reminds her of her faltering memory, spins her into a spiral of downward thoughts.  It just takes the wrong comment and down she goes thinking she ‘is mad’.  Imagine how she feels this morning being reminded, during a phone call yesterday evening, that she had forgotten a close family member’s birthday?   The  first thing she said this morning was: ‘I can’t believe I forgot his birthday’.   Now she is in a right state: thinking all sorts of negative thoughts.  I’m going to have my work cut out today!

Dementia: Good News from the NHS

I am pleased to report that nothing untoward was revealed by my procedure yesterday.  Maureen didn’t come along after all as she just couldn’t get ready in time.  However, I was well looked after by excellent nursing staff who eased me through a rather unpleasant procedure.  I elected for the spray at the back of the throat rather than a general anaethestic.  However  you still can feel them prodding around your digestive system during the examination.   Thankfully, I had some lovely nurses on hand to ease me through my discomfort, and wipe my furrowed brow.

On a previous occasion I had experienced  the same procedure at a small private hospital, that also carries out work for the NHS.  Yesterday’s experience was comparable to being in a private hospital.  I would give the Endoscopy Suite and all staff a five star rating.  They even  managed to prioritise aspects of my investigation, so that I could get back home as quickly as possible. I have passed on my thanks to all concerned, and will put similar comments in writing..

 

 

 

Dementia: The Way Ahead (2)

I have reblogged a post  from nearly two months ago to take a check on how I am doing in trying to be more than a Care Partner.  In short, the simple answer is not very well: to put it kindly.  I will address my ‘progress’ at the end of the post

Dementia: The Way Ahead

The next few Featured imagedays are important in our journey with dementia.  The appointment with our social worker on Friday morning will be the start of my Carers’ Assessment.   I need to take advice on how to develop a life alongside being a Care Partner. There are lots of aspects our lives that have fallen by the wayside, as we have grappled with the consequences of Maureen’s stroke and onset of dementia.

The following list outlines my current aspirations:

  • Visit family and friends on a regular basis
  • Plan holidays
  • Resume meditation classes
  • Resume tai chi classes
  • Return to ballroom dancing classes
  • Return to some form of painting and drawing
  • Attend some form of educational/interest group/class
  • Read more books and other publications
  • Improve my DIY skills
  • Resume involvement in the Labour Party
  • Continue with my attempts to improve the diagnosis and treatment of dementia

I am sure I may well revise this list in the next couple of days.  One thing for sure Cleethorpes is a lovely place to live, as you can see from my photo above of the sun rising over the Humber.

Progress?

In almost two months the only item on the above list on which any progress has been made is the first one.  Thanks to the efforts of our new social worker I now have a day off every other weekend.  I made London a week ago, and I will be in Coventry on Saturday.

If a report on the last few weeks was written I think it might say: ‘He talks a good game’.  The procedure I am about to undergo in a few hours might be a warning that Carer Burnout is around the corner unless I, and others,  begin to place more importance on my own welfare.

Dementia: ‘I want my wife’

Today’s posts will be an hour earlier than normal because of my hospital appointment.

There is a selfish reason I want Maureen to come with me to hospital this morning: it might just save medical staff a phone call.  When I had my first hip replaced a few years ago I woke up in recovery crying: ‘I want my wife’.  Maureen tells the tale of hardly having the time to sit down at home with a cup of tea, before the phone rang with my request.  She then hoot-footed it back to hospital to comfort her ‘old man’.

I am hoping that I won’t be quite so demanding this morning.  It is reassuring to know  if I do need my wife to comfort me after the laproscopy she will only be a stones throw away.   My mum used to tell stories of dental assistants at the School  Clinic fetching her into the recovery room when I was a young lad:  laying on a couch spaced out after a filling.

Dementia has robbed mum and Maureen of these memories.   So they are no longer able to tease me about being a wimp – not that either of them ever would!  It will be interesting to see how I cope this morning.

Oh I nearly forgot – when I put UB40 on yesterday evening Maureen loved singing along with Ali Campbell.  I think that concert will always be there as something we will never forget: it’s the emotional memory that remains with us until the end of our lives.  If Ali could have heard her yesterday evening he’d have her singing with him on Homely Girl at his next concert.

Dementia: Singing from a New Paige (sic)

I know this is the third post of the day but I just have to post it.  Maureen has just found an old cassette tape of hers by Elaine Page.  I have popped it on the deck and the response is amazing.  She is singing along and busy cleaning the bookcase where the player sits.

I would speculate that the music has reminds her of the ‘good old days’.  Trapped in an abusive marriage, where she stayed for the sake of the kids, music was her escape route.  You would only have to see her singing along to : ‘I’m gonna wash that man right out of my hair‘  – to get the picture.

What interests me in all this is something that Yvonna,  my resourceful chemist, mentioned some time ago.  She recollects an experiment where subjects were taken back to a moment in time when they were well.   Apparently the results were amazing with astounding recoveries.  Music has such a transformative impact on Maureen.  I wonder how she will react if I put on a bit of UB40 to remind her of the first concert we went to together 25 years ago?  There’s only one way to find out!

Dementia: Gastroscopy an Opportunity for Compassion

I have golden opportunity tomorrow morning to give Maureen a chance to show her compassionate nature.   At 9.15 I have to be in hospital for investigations into my gastric problems.  Not a major procedure, and I have elected for the spray at the back of the throat rather than a general anaesthetic.  A bit of meditation carried me through the procedure on a previous occasion.  I have been deliberating this morning over Maureen’s involvement in my trip to hospital.

Generally, we accompany each other when medical procedures have to be carried out.  This went without saying when we could both drive, as this gave us an option if either of us didn’t feel up to being behind the wheel.  I can’t get Maureen to come along on this basis any longer.  It would be tempting to leave her in bed in Chloe, our carer’s, capable hands.  However, I think this would be serious mistake and deny Maureen an opportunity of doing something that she has always done: ‘caring for yours truly’.

I think the plan on this matter is quite simple: it has to be based on giving Maureen the chance to show her compassion and nurture; something that came naturally to her before stroke.  To leave her in bed and go to the hospital alone would be saying you are not the person  you used to be.  That would be illogical when we are asserting that: Maureen is not ill: she is recovering from stroke.  Chloe can be our back-up driver and take Maureen for a cup of coffee while I have the camera down my digestive tract.

Dementia: Jeckyll and Hyde

I think I have mentioned several times that you never know what you are going to get with dementia as presentation can change so quickly.  Last night was a prime example as Maureen went through her bed time routine she couldn’t find her toothbrush or paste.  All sorts of recriminations and accusations took place, until I came to her rescue and remembered where she had put her toothbrush.  We went through a similar trauma this morning as she hunted for her slippers.

When the hunt is on I am one of the enemy: there is no end to the suggestions of aiding and abetting that might have gone on.  I’m long enough in the tooth now to know that this behaviour is not going to change.  What I simply have to do is try to minimise the times it happens.  I have to get my act together and make sure things are in place at key times of the day.

I developed a helpful catch phrase yesterday for the morning routine.  In answer to Maureen’s perpetual question over what to where: ‘it’s on the chair’.  That reminds me I must put out a set of clothes shortly to ease early morning distress.  I now have to think of a catch phrase for the preparation for bed routine.

Generally, when it is time to turn in Maureen is on her last legs.  As she puts it:’she is falling asleep as she stumbles up the stairs’.  From today  all the gear that she needs must be at her finger tips.   Her favourite pillows have to be in place, toothbushes and paste have to be in her toilet bag.  If she hasn’t got her P J’s on under her trousers they need to be on the bed.

These routines are so simple to carry out that they are easily overlooked.  As ‘nitram’ from Talking Point keeps reminding me: ‘Fail to prepare; prepare to fail’.

Postscript:  It’s just come to me the catch phrase for the bed time routine: ‘don’t stand there and scratch your head – it’s all on the bed’.  

Dementia: What’s the Plan Action Man?

Maureen often says: ‘What’s the plan Action Man’?  As there is no peace with the wicked dementia I have been continuing with my mission this morning.   I resorted to some of early morning  confidence building: helping Maureen to see that she is perfectly ok to be left to her own devices while I pop out to the shops for an hour.  That meant that she could stay warm in bed until my return, when she was sleeping peacefully.  Maureen has proved, on several occasions, that she doesn’t need baby-sitting and likes to be trusted to be left to her own devices.

On return from my shopping mission I woke her gently with another cup of tea in bed.  When she came downstairs for a late breakfast we practised filling the kettle, and making sure the lid was in place before it was switched on.  She is now singing along to a Joe Brown C D as she tidies up the kitchen.

It’s a dismal day here in Cleethorpes so we won’t be going far today.  As it is raining she has just put washing on the clothes horse rather than the line.  She is a busy bee doing all sorts of household chores as the afternoon progresses.

She may well sleep as I listen to the fortunes of the Sky Blues on the radio.  As a loyal Nottingham Forest fan she is unlikely to show as much interest in the match as me.  In fact she might just have a nap if my cheering when we score doesn’t keep her awake.

So ‘Action Man’ has been on the case today; attempting to build confidence as well as cognitive stimulation.  I might even suggest that we go into hold as ‘Strictly’ comes on the T V later.  Adult educators never retire they just watch their hair go white!

Dementia: The Challenge of Neuroplasticity

Maureen’s recovery from stroke is remarkable.  As I have said on many occasions when people meet her for the first time there are three things they do not believe: how old she is, that she has had a stroke and she has a diagnosis of dementia.  I would gamble that even the most astute psychologist would struggle to spot the symptoms when she has energy.  When she tires the signs of brain damage would be clear to the uninitiated.  What I am pondering this morning is do we continue with more of the same or move forward with a new agenda?  Well I have a cunning plan with Christmas looming we have a natural focus for what I have called our personal integrated stimulation therapy. 

Since coining IICST I have wandered into the field of neuroplasticity.  In simple terms my thinking has been moved on from the ‘use it or lose it’ approach to considering how the brain can heal itself.  I now realise I would be selling Maureen short if I just tried to keep her stimulated.  Preparing for Christmas can be fun and there is lots of ‘use it or lose it’ activities that can be undertaken in the build up to Santa’s arrival.  Buying presents and sending cards will build confidence but may not reach the parts that neuroplasticity offers: with ‘the sky being the limit’.

I have to confess that neuroplasticity is an extremely new concept to me, and I am far from well read on the subject.  From my cursory coverage of the subject two activities leap out at me from the screen of my tablet: learning a language and dancing.  They both offer the opportunity to learn something new and switch on something in the brain that leads to the equivalent of rewiring and the brain healing itself.  I hope those better read on the subject than I  will forgive this simplistic explanation.

The beauty of dancing and French are that we could naturally drift in that direction on these dark nights. We have all we all the material we need at our disposal and YouTube offers even more opportunities.  Astute readers of my Blog might well say he has said all this before: his rhetoric is strong but why doesn’t he just get on with it rather than pontificating?  Well when your wife decides to rest her eyes mid- afternoon and stays in bed for the rest of the night then it is a question of choosing the right moment My challenge is  spotting when Maureen has energy and knowing when she just needs to rest.  What’s life without it’s little challenges?  My conscience wouldn’t allow me to sit back accepting the limitations of departmental budgets and watching the inevitable progression of Maureen’s dementia!

Dementia: Caught In the Act

After Maureen’s concern this morning I decided to put the security systems to test to see how simple it is to steal her gear.  I just wondered how easy it is for thieves to get in here and steal all sorts of stuff.

Shortly before 10 am I took off with one of Maureen’s fleeces in hand: red of course the colours of Nottingham Forest.  Whilst in town I a got a couple of strange looks as shoppers thought I was a little early for the festivities.  They would have noticed that my hair is the right colour but the beard needs to come on a little.  I decided against a dry run and resisted the opportunity to ask anyone if they wanted to sit on my knee?  Couldn’t risk being arrested and charged with impersonating Father Christmas.

As soon as I returned home my concerns about internal surveillance were put into context.  Not to be distracted by my tales of being out in the Humber to catch fish for lunch, Maureen interjected with: ‘I wouldn’t have thought that my fleece would have been warm enough out there today’.  So that’s a relief the girl is still on the ball even after a difficult start to the day.