Emails between friends

This week I was asked to provide some information about one of DAI’s founding members, the late Richard Taylor Ph.D. I headed to my files (word and emails) simply titled: Richard Taylor. It was an opportunity to reflect when not feeling hopeless, as it’s often Richard who I turn to when I want to give up or it seems too hard to keep going and I feel hopeless.

Some days I imagine we have come a long way, then I read an old email like this, and realise we haven’t come that far. I still miss dear Richard, as I know many others do. And I worry that people do not want to work together, as that more often causes much more harm to the ’cause’, than good. On the days I start to think maybe we have come a long way, I then read an old email trail like this, and realise we haven’t. I still miss dear Richard, as I know many others do, and meeting him online reminded me of the value of writing, which allowed me to stop crying, which then helped me to make a plan to live beyond dementia.

Email to J with me copied in, from the late Richard Taylor, received on 18 October 2014:

Hello, how kind of you to think of me. I too turn to Kate (and you) in my darker moments for inspiration. We need to stay close. In the end we have ourselves and each other. Here is something I just posted. I thought you might enjoy it. Stay close, stay in touch and I will do likewise. 

Richard

Hello, while the sales and marketing departments are understandably upset when someone calls their baseless claims, “baseless claims” this is only news to those who originally believed the hype. For those living with dementia we know this is not our “home.” We know  we are strangers in a strange land – you all confirm that every day when you ignore who we are and what we need. We know what is happening to us isn’t helping us, we just don’t know how to fix it ourselves, and you all seem to be very little help. A red plate doesn’t make the food taste better. A pill or patch or both a day doesn’t help me understand what the hell is going on around me, who I am, and who you are. 

Today, living in it is ignored by all in favor of paint, pills, and play. Purpose does not grow out of Bingo, Pharmacology, or design. My humanity is not nurtured, when most money has already been invested in building, cure research, and short term ROI’s. Staffing can make a difference. Staffing ratios do make a difference. Appreciating us as full human beings will make a difference. Dementia care cannot be given, it can only be offered. Humanizing dementia care does just that, the transaction create and reinforces humanity in both the giver and the receiver.

This doesn’t need an evidence based, double-blind, controlled, randomized, and over priced and hype study to confirm.

Just ask anyone living with dementia what is important to them, what do they want more of – a well designed facility or an appreciation of themselves as being all still full here? If forced to make a choice would they improve the quality of the food or the quality of their interactions with the staff? Would they vote for higher ceilings or meeting higher level needs? 

Ask us, damn it. Listen to us. Stop trying  to prove to each other you are effective, you know how to be effective when we all see, know, feel, think, act like you aren’t! We don’t need more studies of the wrong elements. The ivory tower, the architect’s office, a drug companies labs are the not the sites from which the most needed, most effective fixes/cures/meaningful changes to resident satisfaction will come.

Richard

On Fri, Oct 17, 2014 at 4:49 AM, J wrote (to me):

I have just been watching your Myths about dementia. Very well done Kate

It is so discouraging sometimes. One gets interviewed and  then  a different message is put out. I was on BBC tv on Monday and although they showed me running my groups (JMG’s) but they did not include the bit I said about how we can actually improve things; they showed Ian Botham the cricketer saying it is Ok not to bother to visit one parent with dementia because they aren’t there etc etc and even ended one transmission with that message! Outrageous!

Then today on BBC Radio they  included  all about my  diagnosis [which took 5 years] but nothing about how one could live well with dementia or what one could do to improve things

At least when one is talking at conferences one can say things even if they have asked for your talk before hand so they can vet it!!

We do not give up and people like you and Richard inspire me to continue!

Best wishes to you J

16 thoughts on “Emails between friends

  1. First off, I’m sorry to hear that Richard is no longer with us, because his voice is very powerful, and it’s so wonderful that you’re keeping it alive and out there, Kate. Wow. His observations are spot on, and heartbreakingly astute. My Mom knows when we’re managing her, she knows when we’re babying her, she knows, of course she knows! Having been a witness to her brain changes over the past three years, I can testify that, even if she can’t express herself, the highly-intelligent and sophisticated person she showed the world for all her adult life is still there – she may not have memories, she may not be able to finish her sentences, she might not be able to connect the dots the way she used to – but everything that makes her human is still alive and kicking. Courage, love, faith, happiness…. these come from the heart and the gut brain, not the mind. We are not defined by what we know or what we can do, even if our culture is obsessed with thinking that we are. I hate that most of the money is being poured into big pharma, institutions which shouldn’t exist, and research that perpetuates the notion of a drug cure. All we have to do is take a more humane approach and everyone wins. Or as Richard said: “Appreciating us as full human beings will make a difference.”

  2. Reblogged this on Seeking The Good Life and commented:
    There is much to write about Maureen’s stay on the Konar Suite and the ongoing aftermath but I was keeping my powder dry for a while. However, I couldn’t let a day go by without posting this blog from my dear cyber friend Kate Swaffer.

  3. Pingback: how many more steps could you take if you couldn’t take any more?

  4. “This doesn’t need an evidence based, double-blind, controlled, randomized, and over priced and hype study to confirm.”

    Exactly! I’m collecting links for a blog post with the working tittle “Stupid dementia research.” All one has to do is OPEN ONE’S EYES FFS.

    Like you and like Richard, I also get discouraged. I also sometimes feel like I want to give up, that there’s not point. But…. wait. I’ll be back I have to post something that’s better than trying to write it…

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