This week I am highlighting a particular blog that I read a few days ago, written by Sarah, entitled: ‘ME, HER AND DEMENTIA’. Sarah has only recently decided to write this blog: it’s about her relationship with her mother Jane, and Jane’s dementia.
Jane was diagnosed with young onset Alzheimer’s in 2013 at the age of 57.
On her home page, describing her intentions, Sarah says:
“I want to share my thoughts and feelings about dementia in the hope that it will help in some way. I want to draw attention to dementia, the cruelty of it, the faults in the social care system, the battle a loved one goes through living with dementia, and what it’s like to care for someone with dementia.
“I’ll speak about how having a diagnosis of dementia doesn’t mean your life is over. My mother and step-father showed such brave stoicism in the face of such a devastating diagnosis and managed to live the best life they could in the little remaining time they had together.
I will also talk a little about myself, and a lot about my mother and who she was. Because if nothing else, I owe this to her”.
In Sarah’s initial blog post, ‘THE HERE AND NOW’, she speaks about her relationship with her mother. How many of her decisions in life were guided by her mother. How, as a child, she remembers not wanting to go to school as that would mean being away from her mother. And how, with her ‘gone’, Sarah now feels lost in the world.
Many people write about their experiences as a coping strategy. Writing things down helps to shift our mindset and re-frame perspectives. It’s an evaluative and reflective process, similar, in a way, to saying things out loud. Sharing experiences and feelings with other people can be immensely therapeutic and cathartic.
There is a lot of emphasis nowadays on listening to the voices of people living with dementia, alongside the voices of those who care for people living with dementia. Learning from ‘lived experiences’. There can never be too many blogs, vlogs, podcasts, books, poems, songs and other forms of expression, describing dementia and its impact and illustrating the diverse, creative, courageous ways that people experiencing dementia make sense of their lives. This is how we gain insight and deepen our understanding.
A blog I read regularly is George Rook’’s. George describes himself thus: Patient activist, Chair of Shropshire Dementia Action Alliance, Influencer for change in healthcare. And I have dementia at 63!
In July, George uploaded a blog post called ‘Waving or Drowning’ in which he wrote: “Today, there is just too much in my head. Too much incoming noise. Too much to process and sieve. Too much out there.”
“I am imploding and exploding … I just don’t know where to turn, how to put all this stuff in an order that makes sense, and which bits to remove and ignore. My head is full, and I can’t empty it”.
George’s feeling of overwhelm will be familiar to many people with dementia. We are fortunate to be able to learn from George as he maintains his ability to articulate these feelings and commit them to a blog. A gift we should appreciate and value.
The change in perspective that writing achieves is exemplified in George’s concluding comments in ‘Waving or Drowning’: “I’m going to take back control, so I can cope. I’m going to get my head back above water. And swim gently at my own speed, wherever I choose”.
Sarah concludes her first blog post with a brave and honest reflection: “I visit her once a week. I live a 30-minute drive from her care home, and whilst the general excuse I put out to the world is that ‘I’m a busy wife and mother and I simply don’t have the time to visit more’, the truth feels far more selfish – I cannot face seeing her more than this. It hurts. It hurts because I miss her so desperately, yet she is physically standing in front of me. My brain cannot keep up with the pain in my heart, and it all becomes too much”.
I hope that Sarah and George will reap some benefits from sharing their stories with those of us who are concerned about dementia and care about the people it affects. It truly is a privilege to gain glimpses into their worlds.
George Rook’s Blog: https://georgerook51.wordpress.com/about/
If you write a regular blog about living with dementia, either because you have dementia or as a family carer/relative, please get in touch and let me know. I’d love to read your posts and will happily share your stories via my blog and through other channels. If you are a novice at blogging, but would like to give it a go, you would be welcome to write a guest blog for the Unforgettable newsletter and website. We can provide some guidance and I would be pleased to look through a draft (if you would like me to) before the blog is published.
You can contact me at email@example.com