May the year you are leaving behind today have been kind to you, and I hope you can remember the highlights more than the sadnesses. Wishing for a fantastic 2015 ahead and I hope all your very best dreams come true.
2014 has been a huge year, with many ups and downs. Life is like that. The title of my first poetry book, Love, Life, Loss: A roller-coaster of poetry (living) I think says it all in one simple line! I’ve had a few days off from blogging and social media, mostly because I needed a break from it, and also because I am [still] on a deadline to complete my book. But I’m almost there, and feel not only relieved, but that I also have time to write a few thoughts about the year that is about to pass.
Dementia Alliance International (DAI) of which I am a co-founder has been operating for exactly one year today and I am immensely proud of this group, an advocacy and support group, of by and for people with dementia. That is not to say we have not had quite a few rocky days with egos, power struggles, and a whole lot of other completely human things finding their way into causing not only the great things, but the turmoil and occasional disruptions. For me, I think the two things that are going to come out of it that are the most beneficial and significant are that people without dementia, who have been used to having control and power over people with dementia, will become used to us reclaiming control of our lives and this oganisation, and DAI will become the peak body for people with dementia globally, to be supported by Alzheimer’s Disease International. These I think, will be our greatest achievement.
This year also saw me re-employed as a consultant to Alzheimer’s Australia, two days a week from August on a six month contract, the first person with dementia in the history of the organisation ever to be employed by them. I am of course hoping this contract will be renewed, not because the money is especially spectacular, but because the rights of people with dementia being employed have been properly acknowledged, and by the peak body advocating for them, setting the example for other employers. People with dementia have a legal right to continue with employment if they choose to after a diagnosis, and still have capacity. Reasonable adjustments do need to be made for them, in the same way any other disAbled person has this right.
On 16th December, I graduated at the University of Wollongong in a Masters of Science in Dementia Care with a Distinction. My first nursing girlfriend Jacinta travelled there with me and we had two days of fun and laughs, and Shibley from London stayed up to watch the live feed and cheer us on via twitter, and some fab friends from Kiama Lynda and Veda supported us as well. My husband also watched the live feed from his office in Adelaide, which really is a sign of true love if ever I needed one. As exciting as it is achieving a degree, a graduation ceremony is really one long boring event, and he’s already been to others!
Of course, after submitting my last piece of work in the vague hope I would complete all the work required to pass, I had not bothered to check uni emails, and so did not find out until the actual day of my pass mark! Passing was all I needed, but to do so with a grade better than that was an unexpected thrill! This may well lead to me doing some work in the academic arena, or further research, and to say there is a lot to do to improve dementia care is perhaps the biggest understatement I will make this century.
On the topic of writing, I am definitely on the home straight to completing my book, the one that Jessica Kingsley Publishers have been waiting on for some months now. The original contract signed in the middle of 2014 had a due date of September, but with my complete underestimation of how hard uni was going to become, and the position with Alzheimer’s Australia being offered to me after signing the contract, it was simply not possible. Anyway, I am almost there, due to submit in the next few days, and, I have also had two poetry manuscripts accepted, both with Ginninderra Press, a local South Australian publisher at the moment in progress for publication. I’ve also had a number of other articles published in UK and Australian dementia journals, which I will add below.
Two weeks before Christmas one of my aunts was killed in a hit and run accident at Port Pirie, and we were able to farewell her on the Monday before Christmas. My husband and I travelled to this regional town to attend and to show our respect and love for her. Ironically, she was buried on the same day as one of her sons Robyn, who had died of an asthma attack sixteen years ago. It was a very sad day for everyone, and a chance to show her how much we loved her. Of course, there is always the wish you had told her how much you loved her one more time… we never get that chance, even with a death that has been anticipated. So not only is it farewell 2014, but it was farewell Aunty Bet. RIP my dear aunt, we all loved you, and you will stay on in our hearts forever.
Blogging and advocacy has become a part of who I am, a part of my life that I love and would miss. Writing of any kind, whether it is an academic article, a blog or a poem, has become a part of my daily life and activities, and there are very few days now that I don’t write at all. RSI has crept into my hand and arm this last week, a by-product of too much writing, but with a bit of Voltaren Gel, hopefully I can keep going! My year has also seen a few more old friends disappear, and some new ones take their place. But also, the few close friends I have are closer than they were. Perhaps this is just a part of ageing and life… A reason, a season, a lifetime. Very few people are in your life for ever, and I feel blessed to have quite a few that have stayed, and some new friends who feel like I have known them forever, closer to me than many in my family. Of course, I have lots of online friends too, but mostly I would not know them if I ran into them in the street, so it is hard to know how friendly we would all be in person!
My best blog this year was the one with 20 things not to do or say to people with dementia, and that is the project for anther book. A chapter on each one, with why and what an appropriate alternative is. As always, there is something else to do following every large or small project if you sit around long enough to think about it.
Published articles from 2013/14 attached below, although I am still trying to find 2-3 of them in my now very unorganised D-attacked filing system!!! If anyone has a copy of any not added below that I may have emailed to you, please send it back to me.
It is hard to believe my desk was once always tidy, and my filing system immaculate. Oh, and my house perfectly clean and the ironing done, including the tea towels and pillowslips… All I can say about that is from a fridge magnet I have somewhere (if only I could find it)… “Only boring women have immaculate homes”. Hopefully with some help rom my BUB, I’ll get my office and files sorted out in the next few weeks…