Far too many people, including some medical professionals, claim that many ‘Dementia Advocates’ don’t have ‘actual’ or ‘real’ dementia.
Invisible disabilities are just that.
Anyway, I feel like it’s time to talk about Dementia and Me again. It continues to be a roller coaster, and I’m needing to talk about it here again. The changes, the challenges, and the gifts and even joy, which I’ve also written and spoken about often, and wrote about it in my first published a book.
I had a meeting with a fellow advocate a few weeks go (or maybe it was months or perhaps even years????), who had heard me present 10+ years ago, long before her own diagnosis of dementia. She mentioned that she’d had an in-depth conversation with me at the social gathering at the end of day 1 of the event. She then said that the next day, it was clear I had no recollection of meeting her the day before, or of our lengthy conversation.
At a support group much earlier this year, I shared some personal news with my friends at DAI. One member very gently mentioned I’d told everyone the same story the week before.
We all laughed.
Seriously, why wouldn’t we. It might seem sad, but it’s also very funny.
It reminded me of something one of my sons said to me not long after my diagnosis: “So mum, we will be able to give you the same birthday present every year…”
We all cracked up laughing.
Yes, it is definitely better to laugh than cry, although sometimes easier said than done.
Care partners seem to have more trouble laughing than us… their suffering is profound (although so is ours, even if many of us dislike being called sufferers), and many care partners report they do not like their new role.
Some are very openly angry about it too, which I’ve no doubt transfers onto the person with dementia who they support feeling their negative vibes. They mean well and come from a place of love, but I’m fairly certain they don’t actually understand what we are experiencing.
Unless we’ve been a care partner to someone with dementia, we also don’t know what they go through either.
As I’ve often asked, who really does have the challenging behaviours? I often think care partners have a lot more trouble adapting to the changes to our (and therefore their lives) than people with dementia do.
It’s true though, that only people actually diagnosed with dementia understand.
Which is no different to, for example, to cancer, domestic violence, getting married, or divorced. If you haven’t experienced these things, you won’t understand what they’re like either.
When talking to friends of mine in the US recently, we all agreed that people without dementia (one friend refers to them as ‘regular people’) mean well and may be good at what they do.
Some of us have been attending some training, and it wass obvious the trainer was not equipped to work with us as equals.
Regular people mostly have no idea what it’s like to live with dementia nor how to communicate or work with us in a way that is not at least mildly patronising.
Being able to adapt to change is good for our overall health, including our Brain Health.
Yes, it is still Brain Health Awareness Month!