It may sound obvious but when your memory is poor familiarity is vital.  We have our regular carer back now and the difference is immense.  She is like a daughter to us and we have had a lovely morning together.  Yes I have stayed here this morning with good reason.

I need to show that we are  married couple who remain very close.  It has never been down the pub or anywhere else for me.  In some ways we are like a couple of Siamese Twins joined at the hip.  We enjoy being together and don’t really need the company of others.  So going out as soon as a carer arrives has not helped at all: it has now stopped.  We are in this together.   We will continue  our journey with dementia close together: that is how we have always done things.

I am realising the debt I owe to K from Dementia Engagement this morning.  She taught me that the Emotional Memory remains intact even when dementia is at full throttle.  I will be eternally grateful for her exposition on the Dementia Friends Course where she likened it all to two filing cabinets.  One with the day to day short term memories is often firmly shut.  The other containing emotional memories is still accessible even when the condition is in its later stages.  How else would I make sense of the vivid recollection my wife has of  last night?

I have just had the most amazing half an hour discussing the events of last night.  My wife has a vivid recall of what she thought was happening after our stroll under the light of a full moon. Her recollection of the events is outstanding.

She has just told me of the strange man who wanted to get into bed with her. How he had brought her back to his empty house.   All the people she had been socialising with had gone: her granddaughter was missing.  She recalled considering sleeping on the sofa then changing her mind.  Her recollection was so clear that she even remembered being nice to him so he would not attack her.  As she described the events of the previous evening I took a risk and called her reality into question.

As I explained to her the man was me her relief was palpable.  She thanked me for being so brave: her gratitude was overwhelming.  For once I appear to have got it right.  I went with her reality last night and helped her to put into context this morning.  My context is: you have had a stroke on occasions you get mixed up – particularly when you are tired.

It seems likely that my wife’s fear of men will continue: when I am seen as the bad guy all I can do is accept the sins of my fellow men.  There is little point in challenging my wife’s reality that some men are dangerous.  How could I?  That is her life experience being replayed out time and time again.  All I can do at those moments is seek to minimise distress.  Last night I appear to have played it well: allow her to find a place of safety and wait until the fear abates.

Three hours or so after her period of extreme agitation I slipped into the marital bed and whispered I had just returned from the bathroom.  This morning when she first awoke I gently stroked her arm and told her I loved her.  She told me how glad she was that it was me in bed with her.   Explaining to her at the right time that she had got mixed up last night worked; she is tired this morning but mighty relieved.

That man is not going to go away.  When he appears in her reality I have to be very wary: this time I appear to have got it right.  I hope I continue to ride my luck and minimise distress as much as I am able..

I have to admit I am completely bemused with what has been going on in the last hour.  Suddenly my wife has no idea who I am.  She is talking to me in the third person and asking me if I have a dog.  Following a short walk we are no longer in our house: it belongs to her Aunty.  My wife is convinced that other people are living here and  will be returning shortly.  She is particularly concerned about the whereabouts of her favourite granddaughter.

It is a full moon tonight and you just wonder.  She has decided to sleep downstairs on the couch because she doesn’t know this house.  She has just asked me my name.  Then she asked me if my name is ****  and  got it right.  Now she has closed the bedroom door and has gone into the marital bedroom.  Something similar has happened before and joining her in bed proved to be a mistake.  The scream she let out when I joined her on the previous occasions frightened the living daylights out of me.

The safest option tonight will be to sleep in our spare bedroom.  I will not risk a repeat of the previous episode as her scream left me shaking.  All I can speculate is that the brain cells and the electrical currents are misfiring.  Thankfully, she is not distressed and is talking enthusiastically about gardening together tomorrow.  She has just me a kissed me goodnight before she closed the door and retired to bed.  She said I am a good man.

This is another occasion where it is sensible to let sleeping dogs lie.

Seven years ago we were on a Baltic Cruise as a special birthday celebration for my wife. We have been reminiscing a little this afternoon. I am going to get the DVD of our holiday out shortly as a variation from watching YouTube in the evening.

This is an attempt to do two things.  Firstly, to try to ground my wife in the here and now: something to reinforce that we are husband and wife.  Secondly, to talk of holidays we might like to try in the future.  Who knows we might even start the process of renewing our passports tomorrow.  I will keep you posted on how things go.

Edited one hour later:

This activity – Cruising – will not take place as the hunt is on for missing distance glasses.  I am beginning to think that looking for something is just another ‘racket’ (Transaction Analysis terminology) something to do when my wife can’t remember how to spend her time.  I would speculate it is a routine: searching in itself just something to do a time filler. I arrived at this conclusion when my wife said: ‘I’ve have forgotten what I’m looking for’.

Its nearly one o clock in the afternoon and my wife is still in bed.  Once again we have had breakfast together in the marital bed.  This has been a pragmatic decision on my behalf to ensure that she eats and takes her blood pressure medication.  She has been trying to find clothes that she is comfortable in: a regular morning chore.  She has just told me:’I’m getting too old for this’.  I think she means that life with dementia is hard and that it is just too much for her: it is for anyone who still has periods of lucidity.

There is no doubt that few of her clothes fit at the moment.  Following stroke the weight fell of her already slim body.  She has regained a little with my ‘force feeding’.  After all who could turn down extra portions of my daily ‘Signature Dishes’ : lasagne is in the oven now and the sweet will be to die for.  My task now is to find ways of making life worth living so my beautiful wife has moments of pleasure within her nightmare.

We are all too old for dementia and when it strikes none of us will welcome it as the ‘Elephant in Our Room’.

When I visited my brother in his Nursing Home on Saturday I noticed how some folk had changed.  My bro used to have a mate and they often walked the corridors hand in hand.  Like my bro he was chair bound on that sad afternoon.  They no longer walk the corridors: my bro’s friend is now chair bound.  I asked staff what had happened and they told a familiar tale.

G, as I will call him, had been difficult to manage so had spent time in the local Mental Health Unit.  Some weeks later he returns to his Nursing Home more manageable but now chair bound.  Apparently, this is a familiar tale and encourages me to speculate on what has happened.  Whilst G has been away medical intervention has taken place to control his behaviour.  In short, he has been given tablets that make him easier to control: he is no longer able to raise himself from his chair.

My bro remains  fit and strong; it is difficult for carers to attend to his personal needs.  His wife has often raised concerns that he is being turned into a zombie by too much medication.  I have witnessed my own wife becoming violent on more than one occasion.  She has struck out a me couple of times with some accuracy and with good cause.  My unhelpful responses to her presentation provoked her: she is not becoming violent she has dementia.

This post is in no way a criticism of my bro’s care home or any approach to dementia.  It’s a warning really: get it wrong and you will pay for it.  I deserved the slap on my face: I had failed to understand my wife’s reality.  Probing where she was hiding her dirty clothes indeed: ask a silly question you will get more than a silly answer when dementia is around.

My wife is convinced that people are always moving her belongings around even stealing things.  This evening she is on a mission to find a missing  boot.  She is convinced that someone has deliberately moved it out of her vision.  Her searching is incessant.  As she wander from place to place she mutters about how others are making her life difficult by constantly moving or taking her belonging.

I would speculate that this is similar to the  ‘Packing to Go Home Syndrome’.  It is dementia creating havoc with her life and mine.  She is currently hassling me because I have dropped out of the search.  Her comments sum it all up: ‘never mind it is something to do’.  Quite clearly she has forgotten how to fill her time: dementia has robbed her of the memory of what to do.  Searching and packing are routines to pass time: nothing else.

My job now is to join in the search again for a while.  Then suggest that we do something else i.e. redirect her to something that will help her to fill time.  I will let you know how it goes tomorrow.  I may be in for a long night.

My wife is an articulate very intelligent woman.  She has had a stroke that has led to vascular damage leading to difficulties with her short term memory.  Some say she has mixed dementia and I think that is where I would put my money.  The stroke robbed her of 50% of peripheral vision.  Anyone who sees her at a good moment would not believe she has suffered long term damage from stroke.  Her resilience in the face of adversity is remarkable.

Her husband became rather tired in the last few days and sought additional support from Social Services.  Unfortunately, they have little understanding of the impact of dementia within a household.  They also fail to understand that my wife tires easily: energy is eaten away as she tries to process information.  Their intervention led her to believe that is has all become too much for me and I no longer have the capacity to look after her.  Unfortunately, it gets worse than that.

In my absence they asked her if: ‘she was happy’.   As she has come round after her ordeal, and it has taken her a couple of days in bed, she is put things into perspective.  She has said this morning that they keep trying to prove that she is depressed.  I think she has a point and i know where it is coming from.  They are trying to apply a model makes no sense with dementia: the medical model.

All of this reminds me of John Lennon.  When asked at school what he wanted to be when he grew up his short written answer was: ‘to be happy’.  His teachers said he didn’t understand the question he said: ‘you don’t understand the answer’.

I would say two things: lots of people who have been infecting our lives do not understand dementia.  They also fail to understand the limitations of the medical model and it’s outcome for mood.  Antidepressants are no better than a sugar coated pill for mild to moderate depression.  You should know that by now if you followed my Link in an earlier post on this Blog.

Just in case you missed it I will post the link again: Irving Kirsch