Opening the flood gates

This morning I'd been invited along to meet the board of the Lincolnshire NHS Foundation Trust and tell them of our experiences on this journey through dementia.  Some of my friends, when I'd told them about the invitation, had asked whether I thought the board were quite ready to hear what I had to say and the reaction certainly told me that it wasn't what they expected.  In fact the Chair of the board said that it wasn't often they were stunned into silence but my tale of an almost complete absence of support had done just that.  They were all lovely, asked good questions and said they would be in touch about a way forward not just for us but for others in our situation so that was all excellent and hopefully will bring about changes in the system.  They also asked me if I'd mind being filmed for a short retelling of the tale.  I said I didn't mind on condition I never had to see the film so fingers crossed I don't.  The thing that took me by surprise about the whole experience though was how emotional it all was.  You might think I should have expected it and certainly I've thought for a while that the only way I'm able to cope with all of this is to put a lid on everything I'm feeling but I was really surprised by how quickly I unravelled as soon as I began to describe the moment we were given the diagnosis.  It's a long while since I've sobbed and I didn't do it there but on the way home the floodgates really opened and it all came out leaving me with a feeling of relief that something might be done so that others don't have to go through what we have and a determination to work in whatever way necessary to help get it done.


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Comments

Anonymous said…
Give been very brave Jane it's the bravest thing of all when we show our vunerability xx
Snuffycat said…
I’ve been reading your blog for some time, Jane and I feel now like you and Ash are in a way like old and valued friends. My own situation is different to yours in that I’m the sole carer of a 90 year old aunt with dementia, so a little removed in terms of the emotional connection, but close enough to experience the immense daily frustration of dealing with someone who can’t hear, lives completely in the past and has lost all short term memory.

I’m sure your address to the NHS Trust was an absolute blinder and told truths they needed to hear. I really hope that good things come out of it, not just platitudes. But you have grown with your family’s experience of dementia and forged a positive way forward. You’ve blazed a trail, lovely lady, and you need to be very proud. I hope you do find it in yourself to look at any film recordings; I’m sure it won’t be as terrible as you think!
dasntn said…
Well done Jane,

sound like it was tough but also very powerful. Let's hope something comes from it!

Jane said…
Thank you for these comments they're boosting my self esteem no end. In an odd way the experience was cathartic as I managed to tell the right people all the things I've wanted to say for a very long time and I really do think it will have an impact and in the process save a lot of people an equally horrendous experience in the future. However the thing to do will be to watch this space as the saying goes.
Brenda said…
You really are so strong and brave the way you are dealing with this Jane. Ash is so lucky to have you by his side in this journey. I really do hope that the board take notice of what you told them and make some changes for the better.
Jane said…
I think they will Brenda. They've left lots and lots of lovely comments on twitter and two in particular have asked me to help with it all which will give my brain something to work on.