Friday, 20 April 2012

Dementia, Caring Heartbreak and Hope

It’s Friday night, I have just checked on my we mum and she is sleeping peacefully as I left her room to walk to mine I can hear a sound that I used to be part ofThe excitement of people getting in a cab looking forward to a night out, something I used to enjoy but not anymore, I have only left my house at night 8 times over the last, well nearly 3 years. you try and ignore how life used to be, you have to in order to carry on, there is a constant sadness in this house I would never compare how I live or feel to the destruction that dementia is trying its hardest to bring to my mum, or how she feels or lives, I wont compare it , but I have to, as her son and carer witness it every day and night and it breaks my heart that’s the reason I raise awareness , heartbreak ,I feel it inside all the time ,I read it in letters and I hear it from the people I meet ,I hope we find a way to bring a better understanding on how we live as carers ,I  hope we find a new and better way of understanding and discussing  dementia to the wider public ,and I hope we do all we can to stop people feeling so alone and helpless. In the letters I receive certain words and phrases are repeated time and time again, no one understands, lonely, isolated .and why do we have to fight for everything, we have to start discussing and understanding dementia and caring in a new way, we have to bring a better and more honest  understating to the wider public on how we live and feel as lonely and isolated as we are, its less than it used to be ,I have travelled round in my 22 hours respite over the last year meeting and talking to carers who attend carer groups and centers and I see the friendships and help they provided ,I joined my own local care center a wee while back and I encourage people to get in touch with their local center and see what help is available I feel more able to concentrate on giving my mum the best care I can at the moment as my local carer center is  dealing with all the little bits of my life that ignore or never understood or had time for .it wont take the dementia away, its not a golden ticket ,but it helps ,in an ideal and perfect world we would have all we need and dream of. For all the things that are not available to help us at this time is it not as big a tragedy to not be aware or able to get the help that is available
Good night
Tommy and wee Joan

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