It is Day 9 of Dementia Awareness Month 2015, or Alzheimer’s Awareness Month as it is technically called and Trademarked. As Alzheimer’s Disease is simply one of more than 130 types or causes of a dementia, many people with dementia, prefer to call it Dementia Awareness Month; we hope that one day, organisations will do the same.
Today, it is a rambling blog, with rambling thoughts, most of them about living with dementia, or about blogging, our family care partners, my husband and children, and my many friends and family – some who have stayed by our side and continue to support us, and many, including my parents, who have unofficially chosen to move away. They just stopped contacting us or returning our calls or sending birthday and Christmas cards.
Why do people support someone with dementia? Why do they not? These are the two questions so many people with dementia ask, and generally, have no answer for. Most of us believe it is not due to meanness or unkindness, but rather due to ignorance and myths.
Perhaps it is simply the myths and stigma of dementia, as the public perception is that once you are diagnosed, perhaps you have grown horns, or more likely, as is because of the way we are most often portrayed in the media with offensive and negative terms and language, using images of ‘very old’ hands or sad faces, with funeral music, as if when we are diagnosed with dementia, we are at end stage.
That is, for the most part, not likely or even possible, in the same way people with cancer are usually not end stage of their life. That is, quite simply, just wrong. It is also the reason, if you are seemingly living well with dementia, so many question your diagnosis, even though, if you were living well and in remission even from a cancer, people would not only applaud you and want to know what you were doing, they would NEVER question the diagnosis.
Most often, dementia is portrayed in the media by highlighting the deficit we have, rather than showing the lighter side of living with dementia. I guess if it looks easy, if it looks like none if ‘suffering’, they done; see newspapers, and advocacy organisation don;t get funding. But this tactic is at a high personal cost to people trying the best to live beyond the diamond if dementia.
What is highlighted publicly and almost everywhere, are our deficits, and our losses and sadness, rather than the strategies we could adopt for living with the symptoms (or disabilities, as I prefer to see them) of dementia. If we were in a wheelchair, or had lost our sight, the media and public support around these would be vastly different; it would be supportive, positive, and would help us see there was life after our disability, it would not define us by our losses.
They seem simple, but I LOVE POST IT NOTES. I love laminated help sheets. I love electronic reminders, and my husband who phones and reminds me in case I ignore the electronic reminder!
I love my walking stick as it stops me falling over.
I especially love the way Universities support PEOPLE with disabilities, regardless of the reason for the disabilities.
The university disability support staff do not ‘write people with dementia off’, they teach us how to support our new and changing disabilities.
We now just need the health sector and the public to catch on to this innovative and novel idea…