This blog is about my mum and her struggle with dementia (or, more accurately, my struggle with her dementia). If you have at some point searched the internet for “parents with dementia”, “grandparent with dementia” or “close acquaintance / family friend / some bloke I know with dementia” and found little that felt relevant, then this might be the place for you. If you’ve typed “My mum is demented” into a search engine and meant it in the literal sense (as opposed to your mum having just had a massive go at you because you hadn’t tidied your room / told her she looked nice / taken her shopping) then there may be something useful for you here.
The dearth of relevant, accessible internet chat about dementia seems totally out of keeping with the increased public recognition of the disease. Unless I’m just not looking hard enough – but who wants to look hard for this stuff when you’ve got so much else to worry about on a daily basis. I – vainly – just want to hear about somebody who is like me and how they are coping. I don’t want a spiritual experience; a cosy reflection on Pastor John’s sermon and how it was loosely relevant to Alzheimer’s (believe me – I just found one of those). I don’t want to be preached to or have the virtues of caring for someone with Alzheimer’s extolled to me by an evangelist. I just want a clear, perspective on how it feels to watch your parent lose their grip on reality without losing yours. And an acknowledgement that there are tiny moments of comedy to be found lurking in the mire of Alzheimer’s disease.
My sense of humour is already pretty dark. I’m a doctor by trade (a proper medical one by the way) which does help me understand some of the mechanics of the diseased brain but leaves me pretty helpless in the face of application forms for Personal Independence Payments. The hard outer shell that one develops as a practicing doctor, toughened by years of breaking bad news and watching bleak life stories unfold, has enabled me to find comedy in really quite inappropriate scenarios and believe me, that is the most useful skill I have in facing this disease.
mumhasdementia.com 
This is a brilliant insight into how it must be, dealing with a parent living with dementia. It is a breath of fresh air, being told by somebody actually having to witness the reality of this cruel disease. I love the honesty with which it is written, I imagine its a blog people will really be able to relate to. I only wish I had found something like this when I went through a painful diagnosis with my mum a few years ago. It would have been such a comfort. I look forward to reading more…
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This is brilliant. I am laughing and crying in equal measures. I lost my grandfather to Alzheimer’s. He was a brilliant man. A teacher and a superb linguist but I have to confess to telling the story of my grandmother coming home to find him washing his ties in a bowl of milk to friends and relations and laughing heartily. It does not diminish the sadness of his death or the cruelty of the illness, it’s just that some scenarios when you step outside them are bloody hilarious! And let’s face it, if you don’t laugh you will just cry. I think this blog is so refreshing and brilliantly written. Your mum (as she was) would have been proud. I can’t wait to read more!
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This is brilliant. I really hope it will help you and others deal with this horrible, but at times oddly funny, experience that you are going through with your mum.
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Thank you. Have just sobbed my heart out this evening during a call with mum, who asked if my dad was round mine. He died 3 yrs ago. You’ve made me smile.
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Sam – Thank you so much for your lovely comment. This was exactly my intention in setting up the blog – there is precious little laughter in the world of Alzheimer’s and at times everything can seem so bleak – a shared smile makes all the difference. Good luck to you and keep me posted as to how you’re getting on xx
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Hi
I got in touch via twitter regarding our national carer survey on best dementia home support. The survey gives you the option between two care packages, and you need to choose one. You are asked to choose one of two about 18 times. This will really help us to understand what carers really want and need in supporting or having supported a family member with dementia at home.
If you could send me your email address, I could send you the online link to the survey and the information sheet.
Best wishes
Clarissa
ps. Great thing your website, very helpful to others I’m sure
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Hi Clarissa – yes I’d definitely be happy to take part – the email is mumslostmarbles@gmail.com and thank you for your comments
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I don’t know whether you know, but the Financial Times’ seasonal appeal is for the Alzheimers Research UK fund – https://www.ft.com/content/af1da9fc-ceb6-11e7-9dbb-291a884dd8c6 (I hope you can see that). It is potentially worth a lot of money and there is a matching contribution of up to £300,000 from Goldman Sachs. If you email me I can send you a link to the launch article from the Saturday paper (behind a paywall, but I can gift it to you). One of the things mentioned is “our stories and yours: a special project to collect and share experiences and personal perspectives from readers”. Few people who write about dementia have your intensely practical focus. I don’t quite know how (yet – I will investigate), but it would be good to get your blog mentioned somehow.
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Annabel
I’m not sure how but I missed this comment on the blog way back in November! I’m so sorry – what an idiot I am as this looks really good – am I too late??
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