Tag Archives: #DAM2016

Remember me, by Mick Carmody

Remember Me

By Mick Carmody #DAM2016 #WAM2016

Remember me I am the one who used to be here
I am the one who you spoke to without fear
I am the one who you listen to but do not hear what I say
Remember me I am the one you used to love now for which I pray

Why don’t you call, why don’t you talk
You avoid me when you see me when you walk
This cruel disease robbed us of love and friendship that we used to share
Back then you used to care

Remember me because I am still here
I am told that you do no longer know what say
Simply start with, hello, is what I hope and pray
Remember me please remember me

Thank¬†you Mick Carmody for sharing this wonderful poem, and for the story below for our continuing series of blogs for World Alzheimer’s Month 2016, themed ‘Remember me’.

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“Remember me my old friend, before I was diagnosed we were so close, sharing everything in our lives as one. We were as close back then.

You know we used to share everything just like good friends should do. We no longer go on picnics with our families and kids, or do you all go and not include me.

All my old workmates avoid me at all cost, now that they know what caused my strange behavior and that I could not remember anything I had or had not done.

Now my phone, my car and my life all sit idle because nobody remembers me. Out of sight, out of mind is what hurts me the most.

I look at my mobile phone contact list which says two hundred and fifty three in total of I call just three. That is my mother, my wife and me.

I have been diagnosed with a type of dementia which affects the two frontal lobes in my brain. I can still talk, walk, run, play and have fun.

Remember, I am still here I am still me. I am still the same person as you knew back then. The way I act and speak are still the same. My brain is the one that is causing the problems, you see I   have an incurable disease, there is no cure, something is eating away at my brain but hopefully it will be years before I am affected so much that I cannot walk and talk.

I may knock things over and drop other things to numerous to name but I can still hold a conversation with all of the guys who used to come around without notice, because you all are considered part of my family.

You avoid me when you can, I presume that is because you are scared about what to say in case I dribble or say something that may embarrass you.

Even if you did have to speak to me I would imagine that you would be looking around to make sure that none of our friends saw you and your face would be blood red.

Back then I believed that we all cared about one another and for one another, how wrong was I?

There is one thing that you don’t see and that is that I AM STILL HERE I AM STILL ME.

I am told you do not know what to say, how about starting with HELLO.

REMEMBER ME, REMEMBER ME “

By Mick Carmody, Copyright 2016                                                                                

What do dementia and solar power have in common?

Teresa Zawicki
Teresa Zawicki

DAI member Sheryl Whitman shared this piece written by her friend Teresa Zawicki, and it is an excellent analogy that we have been granted permission to publish here. Special thanks to Teresa, for allowing us to share her story of why the experience of living with dementia and solar power have some striking similarities.

It is still World Alzheimer’s Month and/or Dementia Awareness Month 2016, and¬†we continue our series of daily blogs. It is¬†also either day 4¬†or 5¬†of #WAM2016 ¬†#DAM2016, depending on where you live when this is ¬†posted… As if dementia isn’t confusing enough!!

Living with dementia is like living with solar power, sort of.

By Teresa Zawecki

“Most people who have solar power, have multiple solar panels and regular electricity as backup at night and on cloudy days. Their power capacity is unlimited, as it is for those with traditional electricity. People buy generators, just in case of emergencies.

People with dementia are limited to one solar panel with no backup source. No generators. No traditional electricity.

From the second I wake up, my brain requires power to make my systems function.

If I watch TV, it drains my limited power. Listening to music drains my limited power. Engaging in conversation, drains my limited power. Showering, reading, preparing a meal, doing chores; any activity that requires following a sequence of steps will drain my power.

Anything that requires following steps, multi-tasking, visual and sound overstimulation, a crowd of people, and recalling information (like grocery shopping) drains the power so rapidly that by the time I get 3/4 of the way finished, it’s likely I will have used up every kilowatt of energy.

And then confusion, frustration, mental exhaustion, negative emotions or the inability to form and communicate thoughts hit like a tornado, causing a bigger mess.

Some days, I wake with a fully charged amount, as much as one panel can provide anyway. But often, I wake with a deficit. I have many cloudy days! The same basic events deplete power at a more rapid pace, leaving me unable to function while everyone else move, speaks, and functions at full power with backup sources readily available. They never question it.

People with dementia need people who can either supply some power for us, or do some tasks for us so we have some remaining kilowatts. Even a basic understanding helps.

So know that we operate with a power deficit every single day.

We move, think, speak and function at a slower pace, either because we’re running low on kilowatts, or were trying to conserve energy for something important later.

We hate running out of power. We don’t want this. We didn’t sign up for this plan!! No one would!!”

 

Together in our “cognitive wheelchairs”

For Day 2 or 3 of World Alzheimer’s Month –¬†Dementia Awareness Month #WAM2016 #DAM2016 , depending on the time zone you live in, we are sharing (again) the video of the late Richard Taylor’s presentation at the ADI conference in Puerto Rico in 2014, the same year seven people with a diagnosis of dementia also¬†‘launched’ Dementia Alliance International. There are many days when living with dementia is difficult, and continuing advocacy seems impossible. The memory of Richard, of his friendship, his kinship, his desire for this group to not only begin, but to continue long after we all die, and his legacy is what keeps many of us going… in fact some days, it is the only thing that does! Thank you Richard.

Alzheimer’s from the inside out