The power of a TEAM

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

  • Together

  • Each

  • Achieving

  • More

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.

 

24 thoughts on “The power of a TEAM

  1. Doing anything I can to learn and do the best I can! Did the MOOC Understanding Dementia , enrolled to do the BA in Dementia care – sadly life just became to complicated. Still in plan for the future! I’m in my 80s but the love of my life will get the best advocacy I can provide – and anyone else in my life.

  2. Kate, I think you are incredibly brave and inspiring. My husband, the love of my life, was diagnosed with Alzheimer’s in 2003. He has been in a nursing home for 20months now. It’s not what I wanted but unfortunately, necessary. I spend time with him every morning and even though he has lost most of his speech we are able to communicate through eye contact, body language etc, no need for a lot of words. We had years of people thinking there was nothing wrong with him as he was and still is physically active, walking everywhere and up until a couple of years ago still “appeared” to be “Normal” (not my word!). It is sad that so many people have no understanding of dementia and are so disrespectful. I am also an ex nurse, and over the years have tried to learn as much as I can about dementia to gain some understanding so I was able to support my husband as much as possible. I also get frustrated with people that say, jokingly, they are getting dementia because they are so forgetful. All I can do is my best for myself and those around me and focus on the positive things, even the little ones, each day. Keep up the great work and thank you. x

  3. So good to be part of a group where our experiences are understood and our differences respected. So glad I became a member. Thank you to the whole team x

  4. Hello Kate… I have been studying through the MOOC – Understanding Dementia with the Wicking Centre and this is where I watched your interview with Professor Andrew Robinson… While, at this stage, I dont have dementia, that I know of, I appreciate folks like you coming forward to tell us your own story as you are living it… It’s through programmes like this and stories from people like you, that I hope to gain the knowledge to help understand this disease… I am 74 years old and I love your frankness… Keep on talking… Dawn

  5. Couldn’t agree more Kate and I think this is a truth that goes far beyond your own pursuits in dementia advocacy. Thank you for showing how this applies for you and your TEAM of BUBs! All the best, Craig

    • Agree Craig… too often power, money and huge egos get in the way of progress by refusing to be part of a team. Not just in the field of dementia but in life. Stay well xx

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