Dementia and me

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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 improved support and more respectful language
Stopping 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 others
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 using physical restraints
The justification it is for our safety
Helping aged ‘care’ and hospitals comply with their duty of care
Avoiding insurance claims

Worse than being locked in prison
The persons with dementia
Have not broken the law or done anything wrong
We are not criminals
But rather we have a degenerative cognitive disease
Needing love and support

We need support to remain engaged with pre-diagnosis activities
Counselling to stay motivated
A disAbility access plan and assisted technologies
disAbility equipment, mentoring and friends
Positive psychology for our sense of well being

Please, treat us with dignity as whole human beings
See us as the people we still are
Mothers, fathers, daughters, partners and friends
Support our abilities, don’t focus on what we cannot do
And above all other things
Do it all with respect and love in your heart

Living Beyond Dementia™ is possible
Thousands of us are doing it
In spite of the ‘suffering’ that is projected onto us
Regardless of the lack of proactive rehabilitative support
And as we stand up and speak out for our own futures, collectively
Our voice is slowly being heard and acted upon

17 thoughts on “Dementia and me

  1. Wow! Kate you are an inspiration. I can relate bc I have bipolar, and at this point I am in a bad place. I was denied at my hearing and I may have to move and I have a small disability pension. I hope to become stable enough to go back to work down the road. I’m only 47…this can’t be it. I also became an advocate for mental illness. Thanks for sharing.

    • Hi Clare, That’s fine to use it, as long as you reference it to me (which I had not doubts about, btw!)… it is a version of a poem I wrote a few years ago, and I think has a more balanced perspective of dementia. Good luck with your work, Kate

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