Our Christmas wishes…

Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.

Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…

phyllis-fehrThe first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.

“To the nurse who may care for me:

Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.

Know full well that, that may not be my only problem.

What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.

Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.

You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.

You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.

No, I don’t look like a typical Alzheimer’s patient.

So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.

If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”

Phyllis Fehr Copyright 2016

All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:

“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.

If it is really necessary in order to still believe us, because ‘we don’t look or act like we have dementia’, most of us would invite you to come with us to our next doctors appointment.”

Dementia Alliance International Copyright 2016