Today is the day we find out for sure what it is
A page in the diary "the carer got sick - no help for them"
Written by Faye Monday, 27 July 2009 04:33
Late at night, not sleeping, months of waiting and the day has finally come that we find out a definitive diagnosis, and prognosis. Apprehensive, but at least the benifit of being part of a research study it gives us access to the best medical help/advise that is available. What our family wants is quality of life for Jim and my family, and if that means having to medicate him to control his moods well so be it. Dementia .......such a small word for such a overpowering, overwhelming and soul destroying illness, not only for the sufferer but more so for the loved ones and family.
Have told some work collegues of Jim's illness one was supportive, has been there done that with his brother, however others are shocked that some-one so young can have an "old persons" illness, and can not comphrehend the impact on us as a family. The avoidance of friend/work ollegues will now be accelerated - it is a difficult time ahead for my family . I suspet our lives will radically change over the next few days as it is time for the hard decisions to be made - this is such a lonely and isolate yet personal journey. I remember the words of a speech that Carmen Lawrence gave in the 90's when talking about the mental illness "How much they suffer depends upon our perception of their illness" Dementia is not a mental illness, as mental illness is curable, dementia is a incidious death sentence, that robs its sufferers of their dignity, independence and sense of being.
How does one change the perception and ingornace of younger onset dementia?????? This I have no answers for.