Recently I was chatting with one of my online friends with dementia in Canada, Christine T. She lives alone, so doesn’t have the luxury of the support of a partner to be her BUB. My BUB is at work every day, so in that time I’m doing it alone too.
Anyway, Christine and I both decided that being actively involved with DAI means we each have a lot of Back Up Brains. Together we get through our days as one big online TEAM!
Even when we may disagree on something we still work as a TEAM.
We were not only talking about getting things done for DAI, we talked about how being in DAI means we are also supporting each other just to get through each day, sometimes even to eat.
Laughter and tears, shared alongside the frustration of the symptoms of dementia are our best way forward. In fact, it’s occasionally getting almost too difficult to hang out with most others who are not going through this experience, apart from very close friends and close family.
Why, you may ask? Too often we are accused of not looking like we have dementia, some of us to the point of being called frauds. We are sometimes accused of talking publicly about our illness as if we do it for pity. It’s ok to have a pity party occasionally but everyone I know who is advocating for improving dementia diagnosis and care, are not in it for the sympathy or pity. Our symptoms are also trivialized with comments like, ‘Oh, I sometimes get confused or forgets things too.’
We ALL want tangible, meaningful and positive CHANGE.
Frankly, Christine and I both decided that those who can’t or won’t support us sensitively (on respectful and equal terms) can f*** off! Yep! Both ex nurses, not afraid to swear or tell our truth! I am proud ot say that our active leaders and members of DAI really do work as a TEAM, and because of this, we have achieved much, in a very short time frame
We have to collaborate and work together as by doing that was we are stronger and can achieve so much more. And in reality, I firmly believe those who don’t want work together, or be part of a TEAM who is willing to work with another TEAM, make our advocacy and activism progress much slower.