When I was searching for an image for this blog, I found this ‘time out’ image, which was appropriate as I’ve needed some this week. Of course I found various pictures of children who had been naughty and made to go into time out, but I chose this image instead, as it better reflects how I’ve felt the last few days. After much reflection, and consideration, I am back. I’ve not been in the naughty corner, but most definitely would have placed some others in one if I could have…
So why did I need some time out? The need for time out is no different now, than it was before dementia came into my life, and some days, all I want to do is curl up with Boris, my beautiful Russian Blue cat! And some days, I do, and have wonderful time doing next to nothing. But most of the time, I am really busy, to the point where I should take my own advice and use the “Too Busy Basket” and relax more often. In many ways, I’ve almost come to the end of my wanting to be an advocate; I’m feeling battered and bruised, and wondering what the point of it is if after all this time, people with dementia are still not included in the really important conversations about them, and we are a long way from being dementia friendly. On top of that, when we go against the perception of dementia and do well with it, there are then those that don’t believe we have it, which is hurtful, unkind, and generally downright ignorant.
The ugliest part of having dementia is probably the reactions of others. The two most hurtful reactions are those who stop spending time with us, and those who don’t believe us. We simply have to learn ways to ignore them, which is not always easy, but 100% necessary to get through each day. The offer to take people to my neurologist appointments remains in tact, and so far, the people who have either said to my face (the honest ones), said behind my back (the nasty gossips), or implied I am lying (maybe the passive competitives) about the diagnosis have never taken me up on it. As always, I’d much rather someone criticised or questioned, openly and honestly, to my face.
I’m in Sydney at the moment, attending a two-day meeting yesterday and today with Alzheimer’s Australia which has re-inspired me, and I had hour off yesterday to wander along the beach at Coogie. It was glorious, with beautiful sun shine and gentle breezes, and waking up to the sound of waves has been wonderfully therapeutic; it has been way too long since I’ve done that! It makes me want to spend a month at a place called Arno Bay, where I spent time as a child, and also took my children too often when they were growing up. A really beautiful part of the world. Anyway, I’ll have a go at focusing on blogging daily again, and telling the truth about living with dementia, the good, the bad and the downright ugly.