Bank Holiday Musings – Good Friday

There is a debate around whether you can live well well the Dementia.

A year ago I would have said that you could live well but in the context of trying to offset the stigma of the media and society vision of the hunched over drooling Person with wrinkly hands.

My own experiences especially over the last few months confirm that I cannot live well but I can live within the reducing limits of my diagnosis.

It’s a bit like the debate about plastic.

The majority may want to stop the use of plastic straws to protect the environment but a minority need to use plastic straws for fluids and nutrition due to a disability, yet there is little informed debate on this issue or suggestion of practical alternatives.

There isn’t a right or wrong answer to the question of how people should live with a diagnosis of Dementia.

Experiences differ, people deal with challenges in a multitude of ways, some positively, some negatively.

There is no right or wrong way to live with a diagnosis of Dementia.

There are different stages, each with its own challenges, there is no one size fits all dogma as to how Dementia is experienced, nor should there be.

The personal and professional experiences of each stage of Dementia are valid and should be seen in the context of those individual stages.

People showing that you can live within the reducing limits of a diagnosis, do not do so to belittle the personal and professional experiences of the End or Palliative stage of Dementia.

Nor is it done to demean a person unable to live within those reducing limits.

From our personal experiences of the stigma and the negative narrative which disables people and their families when they are diagnosed, we try to show not that it is all a bed of roses but that it may not be  the beginning of the end, but it may be the end if the beginning.

At the end of the day it is not about right or wrong.

The negative experiences of care partners and professionals are important.

However, the lived experiences of those living with this cruel chronic disease should be respected, negative or positive.

Those that have a duty of care to us, should take those lived experiences along with their own to stop the stigma and the rights abuses.

To promote good quality post-diagnosis support whose only time limit is death for the person and those that care for us.

To develop a more enabling system that respects our rights and choices.

To treat us like human beings with feelings, hopes and fears.

Until such time as these things are achieved, people will continue to speak out about their lives experiences.

Until that time, we have been failed by those that claim to speak for us and abused by stigma, ignorance, rights abuses and a disabling system of care.



 

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