tag:blogger.com,1999:blog-2429560125838989988.post2688990658527234637..comments2024-03-26T23:41:10.319+00:00Comments on Authors Electric: Confabulation by Julia JonesKatherine Robertshttp://www.blogger.com/profile/17196712319655603442noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-2429560125838989988.post-69790510397533651552014-03-10T15:23:27.825+00:002014-03-10T15:23:27.825+00:00Thanks Dennis. You might like to point Rosalind in...Thanks Dennis. You might like to point Rosalind in the direction of Val's Changing Age, Changing Minds book which was published by Newcastle University's Institute for Ageing and Health and which includes some of the poems she wrote with dementia sufferers. I didn't know Kay was a carer. Yet another reason for wishing you lived in East Anglia!<br /><br />Thank you too Reb for kind words.<br />julia joneshttps://www.blogger.com/profile/09773900100240758504noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-90745668852367033392014-03-10T12:30:59.589+00:002014-03-10T12:30:59.589+00:00Yes, Julia, a wonderful post. My mother had dement...Yes, Julia, a wonderful post. My mother had dementia and I can well understand how things are for you. Kay meets many dementia sufferers in her work as a carer: each one is different and needs a different approach. Among other things, she has found 'Contented Dementia' a very useful book. Rosalind Oates, a young writer whom I mentor and who is also a medical researcher, has a grandmother with Alzheimers. They have been working together on writing poetry. The results are very interesting. The grandmother is retrieving and formulating many lost memories and though they may be 'false' they are beautifully expressed and moving - and give her much pleasure. Roz is just starting a PhD on dementia. Poetry as a form of not merely therapy but as enabling constructive achievement and a way of tapping into lost events are at the centre of it. Dennis Hamleyhttps://www.blogger.com/profile/15781139870037634374noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-6003867813365979722014-03-09T16:07:36.817+00:002014-03-09T16:07:36.817+00:00Thank you for sharing. A deeply moving, provocativ...Thank you for sharing. A deeply moving, provocative post.glitter noirhttps://www.blogger.com/profile/11728649916344336118noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-32617140608143145252014-03-09T14:02:15.992+00:002014-03-09T14:02:15.992+00:00Thanks Lee and Bill and Cally for your support. I&...Thanks Lee and Bill and Cally for your support. I'm sorry Lee that there wasn't as much discussion and support when you were going through this. It definitely helps, even when it hurts. Saly M has some staggering statistic for the economic size of the dementia 'market'ie the care industry costs and the loss of productivity and all that sort of thing, which of course I can't remember - being rubbish and remembering statistics. Yet the frightening thing is still how POOR so much of the care is and how little (proportionately) is being invested in research. Thank you Cally for your recommendation, ages ago of 'And still the music plays' which I found so much more enlightening than the much praised Keeper.<br />julia joneshttps://www.blogger.com/profile/09773900100240758504noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-71668210872229739362014-03-09T12:05:46.027+00:002014-03-09T12:05:46.027+00:00Perhaps I use the terminology wrongly, Valerie, bu...Perhaps I use the terminology wrongly, Valerie, but mum has also suffered from mental illness through my life and Im being urged to talk to the doctor about anti-depresents for her. Mental ilness is also physical / chemical and perhaps in mum's case continues to give its own flavour to the dementia - part of her overall personalty. I think everyone's experience of AD (or other dementias -she also has vascular) varies according to their individual selves -as you show in your book. On a more pragmatic note Sufolk Council categorise her as suffering from severe mental illness and let her off paying council tax!julia joneshttps://www.blogger.com/profile/09773900100240758504noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-56796787295574953342014-03-09T11:55:29.042+00:002014-03-09T11:55:29.042+00:00as you know Julia I've done a lot of research ...as you know Julia I've done a lot of research with neuroscientists and pathologists into dementia, after my mother's death from AD. I just want to say, I'm not personally in favour of using the term 'mental illness' as it's not really accurate and can be misleading. Dementia is simply brain damage, physical brain damage, just like someone who's been in a motorbike accident, or had a stroke. Lydia Bennethttps://www.blogger.com/profile/09328239009863878547noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-92158047591200251232014-03-09T11:52:21.230+00:002014-03-09T11:52:21.230+00:00there is actual loss of brain tissue and also dest...there is actual loss of brain tissue and also destruction of connections and pathways between neurones. my mum and myself had lots of laughs too. her sense of humour was actually enhanced despite feelings of intense fear and anger at times. Lydia Bennethttps://www.blogger.com/profile/09328239009863878547noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-51463074507294276952014-03-09T11:47:09.424+00:002014-03-09T11:47:09.424+00:00This comment has been removed by the author.Lydia Bennethttps://www.blogger.com/profile/09328239009863878547noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-36692230489920810262014-03-09T11:19:22.727+00:002014-03-09T11:19:22.727+00:00Julia, just hang in there. Dementia is awful for a...Julia, just hang in there. Dementia is awful for all concerned. The only good there is, is in forcing us to view the world differently,and so we learn. But at what a price. I totally agree with you on the mis-use of words like 'mad', 'moron', 'retard', 'schizo' etc - especially as people who work with words I think we should be a lot more careful in how we use stigma terms. I used to be as bad as anyone, but when I started to know 'real' people to whom such poison words were applied and the devastation it caused them, I soon stopped! <br />But the whole narrative, memory thing is truly interesting (when in abstract - just distressing when a daily part of life) Narrative psychology has a lot of interesting elements to it and the 'stories' we tell. And your post is very interesting in adding to what there is to know and say about it. We can't 'cure' dementia (yet) but at least by learning we can learn how to deal with it better - which is the least we can do for people who are blighted by it. <br />Sending you good thoughts and thanks for opening up this to us, to help us think and talk about it. And lots of love to your mum.CallyPhillipshttps://www.blogger.com/profile/15481379296340077102noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-18554466078094065602014-03-09T10:42:41.550+00:002014-03-09T10:42:41.550+00:00Julia, your use of the word 'cruel' for th...Julia, your use of the word 'cruel' for this disease is distressingly apt - cruel not only for the sufferer but for those witnessing it all. This is a very moving post and, as so often, I don't have the words to convey how it makes me feel. Sending good wishes (but I don't know for what) is hopelessly inadequate but it's all I can do.Bill Kirtonhttps://www.blogger.com/profile/16345949773423764808noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-24654941170500789782014-03-09T10:28:52.797+00:002014-03-09T10:28:52.797+00:00Fascinating post, which I wish I'd been able t...Fascinating post, which I wish I'd been able to read when my mum was still alive. Leehttps://www.blogger.com/profile/13770069472552779217noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-65340880746601512512014-03-09T09:21:37.258+00:002014-03-09T09:21:37.258+00:00By the way Jo, the book I found most helpful in im...By the way Jo, the book I found most helpful in improving my attitude to mum was a book called Contented Dementia. Loads of guff in it but really brought home to me the iceberg of concealed and terrifying anxiety that dementia suffers feel as they notice themselves losing the ability to funcution. It persuaded me to be a lot more patient, to stop incessently correcting her (well, most of the time!) and to treat our endless circumluctory conversations as long rallies of ping pong. Sally M's book really is very good but desperately painful and I felt so inadequate afterwards. Music is THE BEST - and for mum animals (esp pony) are such a comfort. Good luck to your godmother and you.<br />julia joneshttps://www.blogger.com/profile/09773900100240758504noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-10680948642594070352014-03-09T09:08:43.220+00:002014-03-09T09:08:43.220+00:00You're right Jo. Even mum and I manage lots of...You're right Jo. Even mum and I manage lots of laughs.<br />julia joneshttps://www.blogger.com/profile/09773900100240758504noreply@blogger.comtag:blogger.com,1999:blog-2429560125838989988.post-49323401628854134932014-03-09T09:01:09.002+00:002014-03-09T09:01:09.002+00:00A wonderful post. I'm looking out for my old g...A wonderful post. I'm looking out for my old godmother (in the absence of any other family) and am still trying to get the grips with the unpredictability of it all.<br /><br />I agree that 'madness' (terrible term) isn't at all funny. But confess to occasional bouts of grim humour that helps to get me through. Nothing I'd ever publish, or even be remotely proud of. But sometimes laughing is the alternative to weeping all the way home on a train.JOhttps://www.blogger.com/profile/03127111575563904349noreply@blogger.com