The ugly parts of dementia

timeoutWhen 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.


14 thoughts on “The ugly parts of dementia

  1. I’m so sorry you’re feeling so down …… I think you deserve and need to go on a holiday ……. can you go somewhere like Hawaii in the next few months? It will be warm and relaxing ……. (big hug)


    • New York here we come on April the 23rd!!!! and VERY annoyed and frustrated, rather than down is proably more how I’ve been feeling, and thanks for your lovely friendship and hugss xox


  2. Kate, you are such an inspiration, and play such a crucial role in opening people’s eyes to what living with dementia really means. Sounds like you’ve had one or more encounters with some ignorant idiots recently – don’t let them get you down. It may not always feel like it, but your efforts DO MAKE A DIFFERENCE!

    But you’re right to take time out. My experience of dementia is only second-hand but still find that talking and writing about it incessantly can become overwhelming. Take care of yourself and know that you have a wide and appreciative audience whenever you feel up to writing. Best wishes, Zoe.


  3. You have been much missed over the past few days. I am so sorry that you have been having a rough time but have risen above it. A good walk on a beach can do that. I am so much in awe of you – you are in aspiration to us all. My thoughts and love go out to you.


  4. I relate so well to what you say Kate about giving up being an advocate, I’ve been fighting battles for 35 years now, well they seem like battles, for our Son who has severe Intellectual disabilities and Autism, he is unable to speak up for his needs, so as his Mum I do it for him, and I’m tired! This will continue for all his life and mine.
    I have tears for you and for us as I read your posts and I wish you well in all your endeavors.


    • Let’s stick together then Anne… sending you my love and support, and I have no idea how tough it mush be for you all. Makes m y few years seem a doddle, and always good to have things back in perspective xox


  5. So sad my friend! I wish I was there to give you a big hug and just be there for you. Hope you enjoyed your beach stroll and have managed to get some ‘Kate time’ to regroup and re energize. I know that you don’t have it in you to give up or give in. Love and big hugs.


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