One of the problems when your loved one has dementia is how to deal with the reaction of those around you.  There are problems with family understanding how to behave towards the sufferer.  It is likely that M will revert to her ‘Hostess With the Mostest’ role when family are around: a ‘nothing much wrong with me’ mode.  This makes really difficult for those who pop in occasionally or speak to her on the phone.  She simply confabulates – makes things up – to deal with their barrage of questions.  So not knowing how the condition is progressing they have little hope of making helpful reactions to her presentation.

The other component in all of this is the wider community.  I have stood back on occasions when M has asked people things that make little sense.  She has made comments in all sorts of situations that would confound the best of us.  Unless the recipient of her comments ‘twigs’ then things can get out of hand.  If she wore a badge or carried a stick then things might be different.  One thing that could help is for communities to become Dementia Friendly.  The short piece that follows will shortly feature in a magazine for our local Mental Health Network:

Dementia Friends Course

It must be over a year ago now, and time passes so quickly these days, since dementia moved into our lives.  Once that dreaded word is used and there is a reluctance in the Memory  Service to use it; with a preference for ‘memory issues’ your life changed forever as uncertainty darkens your door.  As I have said before you go to the Clinic as husband and wife: you leave as carer and cared for one.  It is possible you leave with little else apart from general advice about healthy life styles and the odd hand out.

I think it is possible that I had a stroke of luck in all of this and by chance stumbled across something that has really helped me in my approach to caring for my wife.  The other day she was in floods of tears about an event that had happened 20 years ago.  She had remembered the tears in her son’s eyes when she had told him to avoid visiting at the weekend as they were the days my children might be at her house.  You’ve probably worked it out by now we are both divorced and Saturday was my contact day to see my children.  One thing I am perhaps not making clear, my partner (in those days) was telling her son not to bring his children round as mine would be there for the day.

As she howled in the dining room with the thought of the upset she had caused over 20 years ago I wondered what was going on.  She has dementia yet she is remembering stuff from such a long time ago.  Then suddenly it clicked something from that Dementia Friends Course that  K  from Dementia Engagement ran.  My wife was using her long term memory and dealing with her emotional recall.  Both these faculties would still be intact.

I could go on about many positive aspects of the Dementia Friends Course just remembering: ’Once you have met one person with dementia you have met one person with dementia’ has kept me going: when the going has got tough here.  It has helped me to see that although we are all travelling along on the same path our journeys will be different.