Richard Taylor gently reminded me yesterday of the Abraham Lincoln quote, about only pleasing some of the people some of the time. Thank you. I feel vaguely fragile after another week of taking deeply personal risks by speaking out honestly and receiving more rebukes or disagreement with the way I feel about things. My dear husband is convinced I must continue to speak out for people with dementia, as it is only people with dementia who really know what it is like, and no-one, no matter if they are a carer, family member, or well researched clinician or academic, can know what it is really like. We cried about it over coffee this morning, as the personal cost to us both is high, but I guess with his love, strength and support behind me as my BUB [Back Up Brain], holding me up when I start to wobble, I [we] will keep writing and speaking, for as long as I am able to. Some days it is challenging even finding the words, or understanding something, and I do feel like I am very slowly becoming more naive and much less knowledgeable, somehow fading away, as the symptoms of dementia slowly but surely are infiltrating my abilities. Richard Taylor’s last newsletter made me feel quite sad, as he has been my mentor and shining light for almost 4 years, and he is now talking more about feeling as if he is fading away too. These are the things you don’t often see, and if we don’t talk openly about them, the experience is not only too lonely for some of us to bear; you will never truly have any idea what it is really like. That is unless of course, you too get diagnosed with dementia. Sadly, with a diagnosis worldwide almost every 7 seconds, that is reasonably likely. As the Scottish Dementia Working Group of advocates living with dementia say, ‘nothing about us without us’.
no we mere mortals will never understand what you are going through my dear kate, i can only read your blogs to help me understand in some small way as it is a huge thing you live with, but you sure do have the best BUB, and friends around you for moral support and i am very happy and privileged to be here for you.
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I also have been honoured to know you and watched as you know with horror and sadness at this terrible disease that is taking away your sense of self. But never have I doubted your word, wondered if you were not honest or thought that you would give up fighting for others. That is is the beauty of you and DH, true advocates as you both are, are rare and giving. Both of you continue to share and speak until you can’t for you are being heard and it is important. lots of love to you both xxxx
I guess I am just an onlooker in all these recent dissertations, but I am here because I wish to have some understanding of what I didn’t see happening. I am reading everyones comments with some sadness, but something inside me says “just go for it while you can”
Jeff
Thanks for your support Jeff, and yes, sometimes it is sad for us too. My dear husband often says he ‘hates’ reading some of my blogs, but would hate even more not knowing what I am going through, nd feels for you. In reality, as a couple we are going through it together and it does affect him, albeit it differently, as you well know. Knowledge helps him be a better husband and BUB. Take care, Kate
I have learned so much from you, but probably the most valuable thing I have learnt is that I can never truly understand what another person is going through and what it is to live in there shoes. There are always people who have an opinion about almost everything but probably only people who are gay, indigenous or living with dementia are the people that truly understand what this really means and the stigma and prejudice they face. We can all pretend to understand, but really all we can do is support the people we love. They are the experts we are lucky to know them.