Thursday, 25 October 2012

The loneliness that night time brings


I remember sitting a few months back about this time of night and my wee mum was asleep and posting on my blog about the loneliness and isolation that caring brings and how  lonely and alone we where and felt for most of the journey dementia brought to my mums life and mine as her son and carer.  The affects of dementias toll towards the end where all to visible to see and feel and where for the last few years with all the challenges, obstacles and issues that we cant change easily as we are still in the dark in so many ways about this illness about cause, medication and cure ,.why as a society do we allow loneliness and isolation to play such a prominent and damaging part not only with dementia but with so many long term conditions ,why do we allow this mostly invisible painful part of caring to allowed to be such a big part of our life stories .we can cure loneliness and isolation. and I say this knowing I played my part in causing some in our hearts and home ,my lack of understanding created on my part a protective field around us with some, how could I expect others to understand the challenges and changes we where facing if I did not understand them myself for so long It took us almost reaching crisis to find our voice and by that time my mums health ,awareness and abilities where weakened and we where at the point of no return .That’s why its of the greatest importance that we raise awareness and understanding to a wider society ,wider than the families facing this illness and the people involved with our care .As long as wee keep the discussion behind closed doors and with only the people involved when dementia comes knocking then the words loneliness and isolation will continue to have a free hand to play such a big part in our lives ,hearts and home .and it continues to play a part in mine when I wrote on my blog how lonely night was for us that was just a rehearsal to how lonely the last weeks have been without my incredible we mum, we cant at this time cure dementia .but we can cure two of the words that appear in so many life stories I have read and heard from the people I have met  and that does not take funding ,polices or strategies, it tales openness acceptance and understanding
That’s why this campaign will continue and grow as I won’t stop telling our story and the stories I receive as I don’t want anyone to feel as lonely as we felt to often and as feel tonight and certainly don’t want anyone looking back with the regrets I have with so many struggle due to a lack of understanding from within and towards us  by so many from the day of diagnosis to the journey end
#rememberJoan      

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