There are more and more inquiries from around the country asking how to get started. During the first meetings where we began building what would become Purple Cities Alliance, we had such complicated, huge plans but we quickly realized that simplicity was our best advantage. The idea was to spread awareness, to give as many people as possible a small amount of knowledge about dementia, knowing that once we open the doors people would seek further information. Our first and most important goal was to help the general public understand what it is like for our neighbors who are living with dementia and are still living and working in the community. We saw first hand how many of our friends and advocates who stood with us a few years ago were now living with dementia themselves. We know how many of our friends and families are living with a loved one who is dealing with dementia. What we want is for everyone to understand, welcome and support these people. To understand the determination to live every day to the fullest in spite of a disease that is unrelenting.
If a neighbor has cancer or heart disease we all rally around them, encourage them, offer to help. If a neighbor has a disease that brings dementia we back away, we watch them to see how "bad" it is now, we abandon them and their families and we tell ourselves that they wouldn't want us to see them "that way". The truth is WE don't want to see them that way, we are afraid and we don't know what to do or say. In a Purple City people understand and support their neighbors, we learn how to respond when someone is in a frightening situation due to dementia. We know how to approach, what to say, where to look for help. We are proud to know that there are so many other communities who are ready to make the change and become dementia friendly. We also hope that the simplicity of Purple Cities Alliance, the grass roots, volunteer based initiative which has no money or fundraising attached to it but is simply dedicated to creating a better world for people with dementia, will help those communities to achieve it .
Everything we have done is available to anyone who wants to duplicate it. Our education page and powerpoint can be used by anyone who wants them. The logo we designed is easily adapted to show another city and state. We cannot sponsor any other group since we have no funds but we can support them. We will help in anyway we can. This is a surprisingly easy method to acheive a dementia friendly community. It starts with one or two or ten people who have a passion to make it happen and then it grows! We can do this everywhere! Let's start talking!
From our friend Norm MacNamara:
Pushing My Luck
So, I said to Elaine, we drive up next Tuesday night, stay over, speak, then stay Wednesday night, travel and , speak, stay over and then speak in Birmingham??
NOOOOOOOOO !!!!!! Elaine said, She wanted to scream, I could tell, but she didn’t, for the 11th time she tried to explain to me what we are doing next week, it was right there, written in front of me on a piece of paper, and still I couldn’t see it or understand it.
What can you see that I can’t!! I demanded!! “I have dementia, I am not stupid!! I added quickly, please don’t patronise me. “I`m not “Elaine says, it’s just that you’re getting confused.
Well, talk about a red rag to a bull??
CONFUSED?? CONFUSED?? I shouted!! How dare you!! I can quite plainly see what that says and I cannot understand why you’re having trouble reading it properly. I was shaking with frustration and beginning to get really upset, my mind was in torment as the information on this piece of paper jumped out at me and made total sense to me, Then I glanced very quickly at Elaine, wanting and needing her to say “yes your right darling” but she didn’t, instead, she just put her arms around me, told me not to worry about it and we would look at it later. She had distracted me and I went on with my business on the computer, I started to calm down, my breathing went back to normal, and I could feel my face cool down as it probably turned from Crimson red to its normal colour. Half an hour later, I looked at the same piece of paper, and as you may have guessed by now, it was me who WAS confused, certainly not Elaine. What I saw then and what I was looking at now were two totally different things, to say I HATE this disease is the Understatement of the year.
This disease is not just about forgetting things, but in certain types of dementia , like mine, Lewy body’s, it can make you see things that aren’t there, read writing that isn’t what’s written, and talk about things that may never have happened. I am getting progressively worse, and that’s a fact. I am coming up to my 8th year now and for the last few months I have felt as if I am pushing my luck, but PUSH IT I will , for as long as possible, and when I run out of luck I hope you, my dear friends, carry on pushing the same luck until we win
Much love and tons of respect to all, Norrms and a very understanding “ANGEL” Elaine
Diagnosed with Dementia aged just 50 yrs old,
7 yrs ago now