Recently Richard Taylor wrote to the following message to a person with younger onset dementia living in Queensland who had connected with him via his website; “Thank you for taking the time to write. Have you met Kate Swaffer? She is a kindred spirit, who also lives in Australia, of ours who hears the same…
As always, there are still a few things to do when someones life ends, a few loose ends, a few things you’d wished you’d always done, a few things you wished you’d never done, a few people who wished they had seen you more often, a few people who you wish you had seen more…
November is the month for National Novel Writing Month, or NaNoWriMo and I bravely (stupidly??!!) signed up to give it another go this year. I am way behind the 1600 words per day they suggest you write to keep up, but if I get all my other writing finished by the middle of next week, I’ll…
Appearing as if you are LUCKY virtually always comes through effort and so I usually spell lucky like this: HARD WORK! I heard recently that I have been called lucky because the symptoms of my dementia do not seem to be progressing as quickly as the initial prognosis predicted, or as some others who’ve been diagnosed. This…
The D-word is almost like the C or F words used to be, too upsetting to say out loud. The word dementia is simply too confronting or challenging to talk about or face up to for so many people. Not just the friends and family who don’t know how to cope with someone they love telling them they…
There are lists written on this site, and on many sites outlining the challenges of a diagnosis of younger onset dementia. Having to give up paid employment is near the top of the list and I’ve not found much written up about how difficult it is for a person with dementia. It is in effect, a…
Yesterday was World Alzheimer’s Day, and a number of countries and organisations published reports and Press Releases to acknowledge its significance. Dementia stigma to blame was published by DPS News yesterday, as was the Alzheimer’s Disease International World Alzheimer Report 2012: Overcoming the stigma of dementia. Here is the whole report. The brief Summary in…
There are many negative things that happen after a diagnosis of dementia, and many that are ongoing challenges and changes, but for me the most difficult ongoing ones to live with are the isolation and loneliness. So many friends slip away after finding out you have dementia, not because they are bad people, but because…
A cyberfriend suggested I write about this; “Alzheimer’s disease has one image, dementia another.” Last week at the launch of a DVD made by Domiciliary Care SA about younger onset dementia, I was asked by a woman if Alzheimer’s was dementia. This was curious to me, as the group in attendance were all people related…
An online friend has given me some topics to write about, and today I thought I’d try a NaNoWriMo style writing of this one; “How do you feel about what the future holds for you – the future in 1 year, in 2 years and in 5 years? How does it make you feel? What…
The real price of a diagnosis of dementia is endemic and systemic DISCRIMINATION, caused by IGNORANCE and STIGMA. In every area, people with dementia are being denied the right to contribute. People with dementia are being discriminated against, and their rights are being violated by the very people who claim to be working for us.…
The stigma and ignorance continue. Today I sat through another meeting, where one topic on the agenda was about whether to nominate a person with dementia to join a Ministerial committee, to represent this committee I am on. Sadly, there was not one person there who felt it suitable, and in fact one carer suggested perhaps…
One online friend has asked me to explore and write about older people not wanting to accept a diagnosis of dementia, and how they often don’t want to talk about it or involve themselves and their families in this new world. Many older people I know won’t even talk to their doctors about their memory loss…
My website and Daily Digest or blog has grown legs, and is now being referred to as a resource for a variety of dementia training organisations or other sites. It is exciting and empowering, and also gratifying it is seen as useful, but with this comes a certain amount of pressure to ‘perform’! Some time…
People with dementia face an identity crisis – who am I – who will I become? One major fear is the loss of self associated with dementia, and we face an existential crisis of identity. Our sense of self is shattered with this new label of dementia. Who am I, if I can no longer…
You must be logged in to post a comment.