WHAT IT IS AND WHAT IT ISN'T

This is not a blog about what it’s like to have a dementia. It’s about what it’s like to love and care for someone with dementia while having no prior experience of the disease. It’s about bewilderment, frustration, resentment, sorrow, and occasionally, it’s funny.  

My Dear Demented is Myra, my 84-year old mother living with vascular dementia. She’s intelligent, proud and loving. Also, stubborn as a mulberry stain on white clothing, shamelessly manipulative and to quote her: ‘flippin’ furious’—often all in the course of an hour.

Our roles, mother/child, change constantly and her medical care is often thwarted by her right to agency in her own life.

Our roles, mother/child, change constantly and her medical care is often thwarted by her right to agency in her own life. Because, frail as she is, (weighing less than 5 stone - 30 kg,) sometimes, she’s perfectly lucid and I find myself trembling again in the presence of a fierce parent or listening to a top-class manager analyse exactly how the (very nice) care home she lives in, could be run better.    

This blog aims to bear witness to our stumbling journey together along the road to her death. I hope the observations and reflections recorded here by me and guest writers will help us, if not others. 
 
I have no intention of speaking for those diagnosed (or not) with a dementia. Fortunately, there are now a number of platforms where these folk are speaking for themselves,
e.g: http://www.createdoutofmind.org/talking-life/  
​I can only speak for myself and tell you what Myra said.  
 
The conversations are not all bad. Oftentimes I’m enchanted by a memory Myra trots out from her childhood in war-time Leeds. Or I’ll be gobsmacked by Myra’s matter-of-fact musings about family secrets my sister and I thought we were shielding her from. Then there are her bizarre conflations, when with deceptive logic, she weaves actual incidents together and comes up with a wrong but wondrous conclusion. 
 
Many of the entries will be in the form of reported conversations. But they are reconstructed dialogues and as a teacher of auto/biographical writing, I’m very aware of the impossibility of truth in life-writing. 
 
I’m also aware of the cathartic capability of creative writing, so write about this, I must! 

P.S. If you as kin or carer of someone living with (or departed from) a dementia wish to contribute, please contact me. Or if you just want to comment, do. I’m trying to learn to be a better dementia supporter, so feel free to offer advice.