Friday, June 24, 2016
AlzAuthors: Mum Has Dementia
I originally set out to write my blog Mum Has Dementia after recounting a story about Mum getting stuck in the bath - it was a lighthearted chat with my sister, overheard by an acquaintance with a background in social media, who suggested blogging.
I'm a doctor (GP / family medicine depending on where you are in the world) with a busy medical practice, and have always wanted to write, indeed, have always been writing, usually stories about the people I meet through work and their increasingly complicated lives. At the time of the blogging suggestion, I'd entered a writing competition with the British Medical Journal, and was fortunate to be shortlisted and published on their website.
Suddenly it seemed I had an opportunity to write about something that was very close to home and to share my writing in a way that may be genuinely constructive - I felt that if only one person out there read my blog and felt less alone then it would be worth it.
My 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 my blog 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. Being a doctor helps 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.
I am an anonymous blogger so no headshot I'm afraid. The reasons for this are two-fold. Firstly my parents live nearby and my father, despite being a very sociable, gregarious man, likes to keep his private life private. I think he would struggle with me documenting details about mum's illness and broadcasting them to the world.
The second reason is that some of the comments I make in my blog do not sit particularly comfortably with my role as a compassionate family doctor - I do not want my patients to feel that my professional capabilities are compromised or for them to know details about my life.
I have found the anonymity to be very liberating but it does provide barriers to publicising one's work. What I do know is that those who have responded positively to my blog have done so without any sense of moral obligation because they are 'my friend' - very few of my friends know about it.
As a result, I can be completely honest, sometimes brutally so. This is one of the key issues in dealing with a diagnosis of Alzheimer's in the family - how honest can we be with ourselves and each other? How do we acknowledge our darker thoughts and stop them overwhelming us. The answer, trite as it may seem, is through laughter and sharing. If we laugh at a problem we neutralise it and if we share our stories we reduce the sense of isolation. This is where initiatives such as the AlzAuthors blog are so important.
Please visit Mum Has Dementia here.