An online friend Kay Bransford recently lost her father to cancer and dementia, and wrote “While my Dad had dementia and some days he was a little less put together, he still resembled his former self, just a little tuned-out.” Whilst I do not know her or her family personally, we have been connected for a long time now, and I have felt their loss.
Her words really resonated with me, and it was a beautiful way to write about her father, rather than focusing on the changes brought on by the symptoms of his dementia. To honour and treasure the man he still was, seems the perfect way to remember him.
Whether we become ‘a little tuned out’ because of dementia, or some other disabling disease or an accident, we will always be our former selves, and it is important we are remembered in this way, and not as a disease or symptom. This is especially so for people with dementia and it is important to see past the disease and overcome the myths and stigmas.
I once had about 12 television screens going inside my head, simultaneously, and all with different activities or thoughts. At any given moment I could tune in or out to one or some, or all of them, allowing myself to operate at a number of levels, and for many years without a diary. Now I’m lucky to get one screen fired up, and to stay ‘tuned in’ long enough to complete thought processes or tasks. I really miss that level of thinking… and hope I will be remembered for the whole person I still am, but can’t always find!
I wrote this a few years ago:
“The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the myths!
And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties.
It is a tragedy that so many just see our deficits.”
It is imperative we all understand the human cost of dementia, and remember those people who have been diagnosed with it, as the people they once were, and, still are.