The quest for a more positive public narrative about those of us diagnosed with dementia, and on attitudes about the way a person and their family might choose (and be able) to live with dementia continues. Currently, living too positively with dementia, being remotely functional, and even having fun with it too often gets those of us daring to do so, into real trouble.
We are accused of not having dementia, or defamed as if we are faking it; we are even written and talked about negatively for not being honest about the more negative realities of dementia. I’ve written many blogs about my own sadness and feelings of despair of living with dementia, but for goodness sake, if I focused only on them, I’d never get out of bed.
And the daily strain of having to ‘fight the same battles’ I was advocating for ten years ago, and that others advocated for 20 years ago is tiring, and frankly, bloody annoying. People are at least now listening, but why aren’t they yet acting?
It is definitely time we moved away from only seeing dementia as a tragedy, and start to see living better lives (than expected) with dementia as a triumph. Surely? I imagine Professor William Hu might agree.
Seeing it as a triumph, and yes, sometimes even having fun with dementia, reminds me of the book, Tragedy to Triumph: A Memoir (I’ve used the book cover as my image today). In the short review on Amazon’s website it says: “This story also provides an insight into survival of the human spirit and rising above all indifference, sharing the power of faith, and miracles that happened in the midst of chaos.”
Personally, I believe this is what people with dementia who have chosen to have a positive attitude to a dementia diagnosis do.
That so many people with dementia, and now our families, are choosing to focus on and share our experiences in a more positive light is too often still being frowned upon by many.
Those of us with younger onset dementia get accused collectively of not appropriately representing the larger cohort of older persons who do not share their voices publicly, as we don’t talk about suffering enough, or are too functional.
By the way, research tells us most of this cohort don’t seek a diagnosis until a crisis, and are at a much later stage of the disease.
This unwillingness to share a diagnosis at an older age is likely due to the stigma still experienced, in part caused by the way the diagnosis of dementia is received; they prefer to hide their diagnosis than speak out.
And also, many people of all ages are simply not interested in being public about themselves, with or without a terminal progressive illness. For example, I’m almost sure my parents in their 80’s would not go public about dementia; they probably would not even tell me. I do know though, they see dementia as only a “devastating, hideous and shameful” condition. Many others still only see it this way too. My sons both would probably not share so publicly the way I have done either, about anything.
Thankfully in the 21st Century, not everyone now is only choosing the pathway of doom and gloom that we are mostly all prescribed as the only option, especially at the time of diagnosis.
Even though occasionally I would prefer not to ‘fight’ to live positively at all (no, I am not suicidal, but seriously, living with a dementia is really hard work).
Every single day, I want to stop fighting to stay as positive as possible for as long as possible, and stop fighting to remain as many levels of independence as possible, by developing new strategies and working hard to accommodate my increasing cognitive and other neurological and spinal disabilities.
Sorry also for the war metaphors… advocacy feel like being at war most days.
If I gave up focusing on remaining positive and independent, I’d sit down and cry all day.
So would my husband. In fact he said to a friend recently, that when people ask him what’s it like to live with a wife with dementia, he simply says, ‘you really don’t want to know.” But then, if we did that, we would fit the stereotype of dementia from the 20th Century, rather than the new and emerging 21st century way of living more positively and speaking publicly about it, because we are not ashamed of this condition, and in many cases, we choose to see the gifts of dementia instead.
Check out the article below on the topic of the narrative of dementia published in The Washington Post, received recently from a new online friend, Mary Fridley. Thanks Mary!
It has been people with dementia who started demanding a new narrative for dementia, some more than 20 years ago. It has not been care partners, families, or professionals, even though many of them like to take the credit for it. After all, it can be really good for business.
In reality, these cohorts mostly argued against this new narrative, and many of them still too often suggest it is not possible to live a good life with dementia.