When I woke up today, I had received an email from a friend and colleague at HRW who has done a lot of work on rights for people living in nursing homes.
She alerted me to Sophie Morgan, whose blogs and work I have found to be inspiring; her experience at this time resonates with me, and the post Disability and Covid 19 in particular spoke loudly to me as a person with acquired disabilities caused by younger onset dementia.
After all, dementia is a major cause of many disabilities, and as it progresses, of dependence, even though most think it is just memory loss.
Sophie’s blog Disability and Covid 19 says: “… since I was paralysed in a car crash I have spent days, weeks and even years trapped at home for health reasons. And I am not the only one. For thousands of people with physical or mental disabilities, as well as long term health conditions, this is a part of our lived experience.”
The isolation, stigma and discrimination, as well as so many others having physically and socially distanced themselves since diagnosis, has been my lived experience for more than a decade. It was never my choice, nor something that had been done for a pandemic, or for the good of civil society!
It is due to the pervasive and hurtful stigma and discrimination, and to fear and ignorance about dementia.
Hence, it has been interesting watching so many able bodied people ‘falling apart’ at this time. If this community is struggling with the stress of isolaton and social and physical distancing, and they don’t have cognitive impairments, no wonder people with dementia may find the changes thrust on them by a diagnosis, just just the pandemic difficult.
Almost daily I have been receiving emails since writing my blog on the Behavioural and Psychological Symptoms of COVID-19, as it continues to be read by academics and professionals working in dementia. Many have said it is very valuable piece of ‘thinking’, and will be using it in their work.
One email said:
“I always enjoy reading your work and cite you and your work often in my presentations and writing. You make an interesting analogy between the personal expression of people with dementia and to the COVID 19 pandemic. I have saved a copy as I think it would be an interesting discussion in my classes, once we are able to get back into our real classrooms again.
Thank you for all the advocacy work you do Kate towards making a better world for people with dementia. I hope you know this but I really REALLY appreciate all that you do. Stay safe, XXXX”
A dear friend called me this week and asked me how I was coping. She is like an adopted sister to me, and is not one of the ‘many’ who walked away from me after diagnosis. When I said life was no different now than before COVID-19, and in some ways it is better, she was a little startled, and said something like, ‘yes, I suppose that’s right, it has definitely been your experience long before this pandemic’.
In an online peer to peer support group I attended with other members of DAI today, many of us were commenting on just how stressed people without disabilities are at this time. Many of us also said we’d rather die from COVID-19 than dementia; we are so used to thinking about dying anyway, and not feeling overly distressed by this pandemic.
Many with dementia are so used to the online space being our prime place for communication, it is already our norm.