My experience of listening to someone who has suffered stroke, that has led to dementia, suggests a number of things. First of all the fear never goes away and any symptom takes on a new perspective.  That isn’t surprising when you have had a near death experience. Then there is the possibility that the person concerned will develop a perspective that focuses on a chronic condition, rather than recovery.  It’s easy for me to suggest it but I don’t think any of this is helpful for the individual concerned.  Therefore I focus on: ‘you are recovering from stroke; just as I am from bilateral hip replacement’.  I think this is a preferable state of mind and I preach it daily.  So what has this got to do with this morning?

I think it is important for someone who has dementia to feel useful.  So this morning when my wife declined an invitation to join me on a short shopping trip, I left her the opportunity to feel useful – a messy kitchen.  I returned an hour later and she had spent the whole time tidying my mess.  While I have been out she has been ‘on the go’ the whole time.  It doesn’t matter if things are misplaced or not completely clean: she feels useful.

My wife has now taken to the sofa after hard morning’s work.  She feels good that she has been left alone to get on with household tasks: rather than being supervised by carers.  If we are to have a life with dementia we have to take calculated risks, so that we can continue life in our own sweet way.  It all a question of judgement on the day.  This morning went well: tomorrow brings another day and fresh challenges.

My bedroom behaviour is clearly in need of review.  I am generally the first in bed at night and often up before the crack of dawn.  Generally, I  and watch with increasing bewilderment my wife’s routines before she joins me in bed at night.  Last night was fairly typical as her search for missing things became even more frantic.  Drawers were opened and banged shut as the search for her toothpaste  intensified.  Nothing surfaced and I stayed under the covers for fear of making matters worse.  Various announcements were made including thieves stealing her belongings yet again.

The search went on for over half an hour and the frustration became more evident.  Eventually M announced that she would sleep in another room, away from the thieving B’s that keep nicking her stuff.  At that stage I decided that I could take it no longer and went down stairs to see the closing half hour of Match of the Day.

When I returned upstairs my wife was standing looking out of the window in floods of tears.  I eventually managed to coax her into bed and console her somewhat with a cuddle.  I reassured her that I would sort things out in the morning and we could easily buy some more toothpaste.

Just for a change this morning I managed to stay in bed beyond the crack of dawn.  Therefore, I saw with my own eyes the difference it makes when I am beside M when she wakes up.  Her fears of being left alone are gone and if I play my cards right she knows she is safe with me beside her in bed.  We indulged in matter of a fact chat for a while then I got up and began my morning tidy up of the bedroom.

As I opened the top drawer of M’s dressing table I found two tubes of her toothpaste.  If only I had joined in the search last night I would have saved us both an hour of anguish.  Why on earth I stayed in bed last night rather than help the search I will never know.  It’s not surprising she couldn’t see her toothpaste wit her loss of vision.  The white tubes were on a white background in the half light of a table lamp.

I need to change my behaviour in the bedroom and work towards last in last out.  The former is slightly easier to accomplish than the latter: M continues to sleep for England.

My wife usually wakes up in the morning distressed over one thing or another.  This morning she is worried about whether she is late for school: a return to a childhood nightmare.  I’m pretty sure where it comes from but detail is not important for the sake of this post.  However, just by chance, or intuition, I made a move that seemed to ease her concerns.

I took myself out of the bed and moved to sit on a small bedside table adjacent to her head.  This seemed to have an immediate beneficial impact as I stroked her arm and tried to ease her anxiety.  The reason is quite simple: I am a safe option, no longer in the bed, as she tries to figure out where she is and who I am.  All I am confirming is that I am there to help her; so simple.   As I see the anxieties disappear before my eyes, I almost kick myself for not thinking of this before.

Once I have sorted out what she needs I am off to make her the first cup of tea of the day.  How can the arrival of her ‘Tea Boy’ first thing in the morning be anything other than a good start to the day?

We have had a good chat this morning about the consequences of stroke for M.  As an ex car worker I would liken it to the engine occasionally misfiring: when the spark and fuel don’t quite arrive at the same time.  Older readers may remember ‘pinking’ when the timing was out and the engine would run on, after the ignition key had been turned off.  Oh those happy days with the timing light or a cheap tuning kit: under the bonnet on a daily basis trying to get the old banger to run smoothly.

Hardly being a neurologist my understanding is that stroke could be seen as a bolt of lightening striking the brain.  Lasting damage has been done to a certain critical areas . No one can say with any certainty what the long term consequences stroke will be.  It is possible that pathways in the brain might re route and capacity will be regained.  Uncertainty is the order of the day and the general thesis is that when dementia has occurred decline is inevitable.  Yet there are days when I am astounded by my wife’s lucidity and intellectual capacity.

It would be lovely if I could just get out that tuning kit or timing light and make the necessary adjustments.  Unfortunately my time under the bonnet has long gone: technology has taken over from the mechanic in me – it’s far too complicated now.  When things go wrong with our vehicle now I take it to an expert who plugs in  his lap top diagnoses the problem and sorts out any problem.  So no tinkering anymore for this D I Y mechanic.

I still think it is worth tinkering with my approach to dementia: sitting back and witnessing decline is not for me.  It is clear that having our regular carer back has made a significant difference.  There has to be other changes that we can make to our environment that will impact upon mood and capacity.  Watch this space: there is lots of room for me to tinker with my approach to dementia.

Last night caused me to wonder if I needed to make a radical change to my approach to caring for my wife.  After experiencing a vicious verbal attack I wondered if it would be easier to accept that a more conventional approach to dementia would be sensible.  I have woken early this morning pondering the best way forward and one song springs to mind: We Shall Overcome Them.

I have deliberately chosen Joan Baez version of this song because we saw her in concert over 20 years ago and she probably sang this song.  What we are going to overcome is accepting conventional wisdom in the approach to dementia. I think it is a negative approach to the condition.  From what I have seen in the last year or so the model that is generally being applied to dementia is unhelpful.  I may not be using appropriate professional jargon but my draft manifesto for caring for my wife reads something like this:

• There is uncertainty over damage caused by stroke
• It is possible for the brain to relearn how to function
• Mood is a response to environment
• A psycho social model is the best way of approaching dementia
• The emphasis needs to be on what goes on 24/7 not attending occasional events
• Professional staff need to concentrate on helping carers develop appropriate skills
• Entitlement to support/ benefits needs to be clearly outlined.
• Care Plans need to be reactive and flexible
• Celebrating achievements needs to be the focus rather than watching decline

That will do as a draft Manifesto for the Dementia Party for now.  The date for Annual Conference has yet to be set.

When my wife is lucid she tries to catch me out over her poor memory.  She will even set little traps and then say: ‘ can’t you take a joke any more?’  It’s hard enough trying to deal with dementia but when your loved one has high intellect you are in trouble.

This morning before she came round confusion is abound: this is not our house.  She is complaining about being kept in bed and given tea, as it is all part of a plot to keep her here.  Someone has stolen her dressing gown as it is not where she left it.  Nothing is making any sense to her.

An hour later things are almost back to her being completely lucid.  She is joking about the measures she is planning tonight to catch the ‘thieves in the act’.  She often laughs at some of the things she has said to me when she has been ‘acting out of character’.  I think her favourite its claiming that: ‘I only told her we were married so I could get in bed with her’.

A sense of humour is essential when dementia  is the elephant in the room.   It is not funny to have the beast here but we do our best to laugh together whenever we can.   My wife is singing her heart out now  – ‘Singing in the Rain’ and I have no idea what has tickled her fancy and  hope she doesn’t bring on a storm.  Wow: it’s clouding over – perhaps she’s had a premonition!

I have had some challenging roles in my time but being a carer where dementia is involved takes the biscuit.   The simple fact being you never know what you are going to get or who.  This morning I have had ‘Mrs Upset’.  I am trying to keep things respectable here; so it is safer to say she had her underwear in a twist.  Nothing I said or did led to anything positive: my wife seemed to be looking for a fight.  I stayed out of the ring and avoided a pointless contest where the outcome would only have been joint distress.

Around an hour and a half ago she woke up and thought it was morning.  She greeted me with a smile on her face in a completely different mode.  It didn’t worry me that she thought it was morning and enquired if I had slept well.  I was just relieved that my lovely wife was back in residence.

We still have to resolve the food issue as she thinks our lunch was eaten yesterday.  She asked for breakfast and has then changed her mind; as she anticipates a cooked meal a little later.  I am not sure where we will go on the food issue and may just bide my time.

We have cancelled the carer sit tomorrow as there is nothing that needs doing in the house.  It is possible that if things are favourable in the morning we might make a trip out to visit family in the East Midlands.  The initial enthusisam for a trip out has evaporated and all sorts of reasons for not going have now emerged.  It just a question of seeing how the land lies in the morning.  No pressure just gentle nudging and see if we can make it a little further down the A 46 this time.