The new year has arrived, and I’m still wondering how on earth I arrived at the year 2000! The older we get, the quicker the years seems to go, but of course as I’ve speculated before, that is relative to our age as a year at my age, is more than 1/50th of my age, where as at the age of 5, it was at 1/5 of my life, and therefore a very small proportion of it.
2015 has been an incredible year with many amazing highs, and some devastating lows, and lots in between. I have felt the pain of some very special friends who had to face their first Christmas without their partners, and although it is a long time ago for me, I do recall the terrible sadness of the person who is missing at the table.
The emptiness and loneliness knowing others are spending times with their families, and that yours has died is very difficult to live with, especially when the media is full of couples and brightly shining happy, and fully functional families (as if they really do exist), all having a wonderful time. It is an incredibly difficult time, as most others are in party mode, and many, even close family and friends, barely remember you are still grieving deeply.
So, I salute those of you who have spent a first Christmas and New Years Eve without someone you love, and made it. I was with you in spirit all the way ❤ ❤ ❤
My final blog on my Living Beyond Dementia™ website was on one of my regular topics, and I firmly believe until the public discourse of dementia changes, living beyond dementia will not be achievable for many with dementia, nor even thought possible. Suffering is optional, and therefore, we need to constantly remind those others who insist we are suffering, that this is hurting us, and not helping us to live better lives with dementia. Sure, dementia is a terminal, progressive chronic illness, and has changed how we see our futures, and most certainly how our lives will end, but we are all going to die any way, and it could be from cancer, or a car accident or an aneurism, and perhaps not because of a dementia at all. There are many days we suffer from all sorts of things, including dementia, but to keep labelling us as sufferers publicly is hurtful, and harmful.
We will all live until we die; just because you have dementia, or someone you love has dementia, that is no reason to assume the pseudo death now.
The best parts of my year have been related to our two sons both finding their individual passions for their life and work goals, and my husband who is always there for me, no matter what, even when I am short-tempered with him. They are the reason I live as well as I do with a diagnosis of, and alongside the very determined symptoms of a dementia. Without their support, many things that I have achieved would simply not be possible. My husband in particular, enables and supports me to be as independent as possible, but also in his role as my BUB (Back Up Brain), he helps me with the activities I can no longer do, including things such as very simple maths as I cannot even use a calculator any more. Technology also needs thanking, as without it, we would all be failing more often in the roles required on this sometimes hideous, sometimes amazing train ride called dementia.
Some of the lows of my year have included the continuing exclusion of any sort of relationship with many of my family members and some previously long term close friends, which as been very tough, especially at Christmas and at the other special occasions like the birthdays of my husband and two sons, as they have been cut off as well. There is nothing I can do to change them, so accepting it, and focusing on the things I can change and importantly, can still do, is what I have to do to get through it. I cannot change dementia either, but I can work on enablement and rehabilitation strategies, and positive thinking. For me, for now, this really works. I also know, this will change, but why worry about a future I cannot predict? Having so many global and other close friends makes it bearable. Thank you.
One of the true gifts of dementia, is it has helped me ‘see’ who are my real friends, those people who are with you when you are well and happy, as well as when you are sick or miserable, there for you with unconditional love and acceptance, and without judgement. These wonderful people, who are even there for me, if and when I’ve been behaving unwisely!
My top 5 posts on this blog published in 2015 were:
- Who’s got the challenging behaviours,
- Dementia care missing common sense #DAM2015 Day 14,
- People with dementia have feelings too…,
- The canvas of my musical knowledge is becoming blank, and
- Let us live better with dementia.
Whilst they are not the top posts since I commenced blogging on this site, they are the top ones out of the 268 new posts I published in 2015, which have also grown the total archive of this blog to 1,434 posts.
On top of that, I added 39 recipes in 2015 to my recipe blog, In The Kitchen, taking this to a total of 232 recipes, with readers from 44 countries. Quite a few of the recipes are from my grandmother and even a couple from my great grandmother, and I have also added a few from my cake business.
My newest blog, Living Beyond Dementia™ , where I will only publish once or twice a month, is the place I will focus on how to live, rather than only head towards aged care and death, after being diagnosed with a dementia.
Blogging is definitely a positive non pharmacological and psychosocial intervention for dementia, and especially for managing the complex loss and grief associated with the constant, progressive changes relentlessly being introduced into my life.
Last November, I received a formal letter from the University of Wollongong with a Conditional offer to commence a Doctor of Philosophy. Of course, I am incredibly nervous about my capacity to undertake such a journey, but also excited at the prospect of the intense ‘neuroplasticity brain workout’ it will ensure I undertake!
Dementia Alliance International is going from strength to strength, and I am excited about the year ahead as many more of our global goals and plans will come to fruition, and more of us are advocating and speaking out.
Last January I finished writing my first book on dementia, What the hell happened to my brain?: Living beyond dementia, and although it has taken a long time to finalise it for printing, I believe it will actually be released some time this month, and although nervous, also thrilled. I am also in the final stages of a book being published by New Holland Publishers and co-authored with me by Associate Professor Lee-Fay Low on dementia for an Australian audience. I also hope to sign another contract with Jessica Kingsley Publishers once this one has been released. So, thankfully, there are many more things to look forward to, other than some of the changes that will come from the symptoms of dementia.
There are many other good and perhaps also bad things that have happened, I am sure, but I cannot recall them at the moment. No doubt, my memory bank, also known as this blog, will tell me when I start to analyse it for my PhD, the first part of my research project.
Most of all, I hope you all have had a reasonable festive season, and 2016 will be wonderful for you. Happy New Year!