Dementia and survival

Dementia and me

What the hell happened to my brain
diagnosed with dementia when I was much too young
my children still at school
a deadly terminal disease effecting
memory, thinking, perception, judgment, language and speech

But worse than that, effecting my
life, family, friendships, my sense of self, my identity
and a bucket load of guilt
truckloads of stigma discrimination and isolation
loss of dreams, and grief
sadness, disbelief, lost employment

And yet a new purpose of advocacy and activism
to bring about change
to stop the blatant abuse of the most basic of human rights
of people diagnosed with dementia, young or old
fewer old friends, new global friendships

The role of educator
teaching global lessons to academics and carers
hoping for and seeking change
searching for new ways for professionals
to discover we deserve the same as others with illness
not involuntary restraint

Eventually locked away in secure memory units
given drugs to make us compliant or physically restrained
the justification it’s for our safety
helping aged care and hospitals comply with their duty of care
avoiding insurance claims

Worse than being locked in prison
the person with dementia
has not broken the law or done anything wrong
they are not criminals
they have a degenerative cognitive terminal disease
needing love and support

Support to remain engaged with pre-diagnosis activities
counselling to stay motivated
a disAbility access plan and assisted technologies
disAbility equipment, mentoring
positive psychology for our sense of well being
and to be treated with dignity as whole human beings
Above all else.

Author: Kate Swaffer ©️ 

Footnote: this poem was written in about 2009, and is how I felt a lot of the time back then. Thankfully, I ignored the Prescribed Disengagement®, and chose to continue to live.®

You are very welcome to respectfully join this global conversation.

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