Staying with good grace

I've said all this before but, having read a post on a forum last night, I thought it might be worth saying again.  It seems to me that, if you're going to stay in the life of someone living with dementia you might as well do it with good grace otherwise what's the point?  When Ash was first diagnosed I/we knew nothing about dementia and I was one of those people who felt that if he just listened harder he'd remember, if he'd just try harder he could manage to carry on as normal and if he'd just talk to me about it all we'd be able to work through it together.  When none of those things happened I blamed him for everything that was wrong with my life and we went into a spiral of despair where we were more unhappy than we'd ever been in our lives.  It took Penny Garner and her team at Contented Dementia Trust ( to put me on the right track and I learned that if I wanted my life to be better I had to make Ash's life better first.  I began to use the strategies immediately and overnight life got easier not just for Ash but for me too.  I learned that if I was contented so was he, if I was organised he knew he could relax, if I was happy to be in his company his self esteem grew.  Every positive thing I did or thought was reflected in his behaviour and it made all the difference.  On the other side of this was (and is) the realisation that if I'm unhappy, stressed or bed tempered then Ash's behaviour and confusion is so much worse.  I also realised that if I was in his position I would be equally as frightened as he so apparently is and I would want him to be patient with me, I would want to be able to think he was by my side because he wanted to be and I would really, really like to think that he still loved me and that's why he'd stayed.  To be there in body but not in (the right) spirit seems to me to be a complete waste of time and no help to any of the people involved.  I'm not a saint so I don't manage this every minute of every day, I'm frequently tired which means I snap without meaning to, I get excited about things and blurt out the details unnecessarily, I forget to leave notes telling him where I am and what time I'll be back and each time I do one or all of these things our life is temporarily thrown back into chaos.  I'm also not much good at acting and Ash is far more aware of undercurrents than he ever was in the past so the only way to get through this and live a happy life is to truly believe that life is good, that I'm happy to be here living this life at this time.  Some people may be in the depths of their despair right now and reading this in disbelief but I promise with the right attitude it really can be done.  If you're where I was two years ago and finding it difficult then make one change to your thinking and watch the results.  Find the bright spot in your life right now, focus on that and build on it then get in touch and let me know how it's made a difference.

Oh, and on the subject of white lies (post from 15th November) I have it on very good authority that they are called 'fiblets' which makes me love them all the more!

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Lesley said…
Absolutely brilliant post and it's applicable to lots of situations where people are vulnerable and need support. I can't bear the thought that anyone who's struggling would feel unloved - on top of everything else they are dealing with it is too cruel. To create a 'we're in this together and we're going to get through' pact makes the best of any shitty situation to the point where both parties can get some satisfaction and even pleasure from the joint struggle and successes. And I reckon occasional 'fiblets' are a perfectly acceptable and sometimes even essential tool to help! Keep up the positive vibes, Jane!
Ann said…
May I echo all Lesley’s terrific comments. Brilliant post Jane. Well said Ladies!
Jane said…
One of the reasons I left this specific forum was because some of the attitudes were too difficult to read about. None of us choose to be in this situation and those living with dementia can't do anything to change the situation so it's up to us to make life good again.