Well I am back with good reason.  I am having a short break and will be visiting family members where dementia is more than the elephant in the room:  it is the building.  During the day I hope to take mum out as she still loves a ride in the car.  Now in her 90’s a little ride in the country is one of life’s remaining pleasures.  I will take her back to her Care Home for lunch with her fellow residents and it is likely that she will forget she has seen her youngest son before sweet is on the table.  There are ‘benefits’  from her dementia:  she has  forgotten how much she misses dad and has no idea of the condition of J her eldest son.   Thank goodness and I will tell you why……………….

A couple of years or so ago I took mum to see J as I thought she wanted to see him.  At the time I thought I had done the right thing.  Now with more understanding of the condition I think it was a naive gesture on my behalf   In fact it may have done more harm than good.  I had no understanding of the points that those who understood the condition better than me were making: she needed to remember him as a little boy.  Her dementia was torment enough I had added to it by showing her J was suffering.

Mum was probably bewildered as she sat holding his hand: pleased that at long last she had found him again  but puzzled by his reaction.  He had no idea who this elderly lady sitting next to him was.  She could have been anyone and certainly not one of the’nice (young) ladies’ that surrounded him on a daily basis.  The irony being that at that stage he often talked about his mum.  In fact prior to his incarceration he often wandered down to visit her several times a week.

He had found his way into a Nursing Home following an experience at a Respite Centre where it was alleged he had attacked a carer.  This had eventually led to the conclusion that his poor wife could cope no longer with him at home.  His Alzheimer’s required  Continuing Health Care, medication so he would accept personal care and 1:1 support.  The only thing J can do for himself now is wander the corridors of his ‘prison’.

It is always good to have a holiday even when you are ‘on the buses’.  The first thing that strikes me on my trip is how hard it is for any of us to deal with dementia.  There is no route on this journey.  Nothing is straightforward as I have said before it is akin to trying to find you way round a maze blindfolded. Dementia surrounds myself and other family members.  We all have our different takes on how the condition is progressing.  When you pop in or take a glimpse  of how things are you may develop a different picture from those who see it 24/7.  I know I had no idea what this journey had been like for my sister in law.  In fact many of us made very harsh judgements  on his behaviour.  It is also possible that some of us criticised her for not making us aware of his deteriorating condition.   However, until you have been there 24/7 over a significant period of time your knowledge of dementia and the impact it has on the carer is academic.

We all make observation during our lives: we sometimes stand on the periphery and shake our heads. The only way anyone can understand dementia is to live it 24/7 and then that is only one experience of the condition. In retrospect when i look back and reflect on how I thought others had got it wrong I shudder with embarrassment.   Taking my mum to see my brother agh……………….