Here or There

Many thing I do not understand about the internet that used to be all to familiar
Nothing I look for is remotely similar
You are directed here, only to find here does not exist at all
So, you go to the next “here” only to find here is not there, who do I call
You finally get to where here is only to find here is no longer there
So you ask, the bloody thing where is it, where, where?
OH NO, thats right, here is not there
Try different words, shorter, more direct terminology, then try again
Then you finally to get to “here” only to find you need your account and password from another account only to find you are back where you began
Now of course I do not remember “googly,” or the password, you have a better memory than me
It has only been a year or two you see
You get the user name only the password is incorrect, dam thing
Reset password, new one sent to your email, enough to make you **!!!!g
OK, now I am set new, password, ready to go,”LOG IN FAILED” incorrect email address.
I will try, Yes, worked, Great, back to where I was, stress, stress
Now I am back to here, here is where,????????????
What was I looking for in there?
Simple tasks are no longer there as each day my memory gets worse in so many ways. It is called Dementia


This Way, That Way

Confusion reigns more and more as memories are stored
Do you remember this, do you remember that, trying so hard leaves me floored
Memories bounce around in my head one thousand at a time
This one, that one, confusion, anxiety, can’t remember, feels like a crime
Yes, no, stop or go, confusion turns to frustration the harder I try to bring it all back
Typing is getting worse, wrong keys, words misspelt,typing finger needs a smack
This way, that way, I’m not sure, I am told I have been this way before
People forget my memory is not there and is very hard to restore
Memories, words and thoughts are all inside my head
Words fail to come out my mouth, choosing to stay swirling instead
Bounce, spin, round and round, this way, that way, no this way
Even though I may be slow I my thoughts I can eventually convey
To connect brain to mouth is very hard as everything spins and spins
Then nobody wins
This feeling now like one thousand red hot pins and needles trying to escape through my forehead leaves me feeling weak
Daily challenges we face each week that none of us seek

Dream Big

Those who dare to dream stay strong
Dare to dream, you are never wrong
For even if you don’t achieve, you still achieve
All you need to do is believe, believe, believe
Strong powerful people all started with a dream and they had to fight to win
Believe in yourself, dream big, follow your dreams for this is not a sin
Surround yourself with people that empower you each day
Get out of bed, be positive and strong, thats the way to stay
We all have Dementia, so do I, but I still enjoy every moment of every day
You see, I know that one day Dementia will win, until that day my life is what I make of it
Don`t vegetate, think, poor me and do not sit
Never let people put you down
Just imagine their face as a clown
Ha Ha Ha.
Ask them to spend a day in your shoes

Saying Goodbye

Saying goodbye to two people that you love dearly gets harder every time, with Dementia it is very hard on me
With tears, hugs, kisses and love you so much,it is not goodbye, that is forever you see
Three days together is never long enough
That is why saying goodbye is tough
People with Dementia do not accept change very well
When the people you love the most leave, for a short time it will be pure hell
Love you guys with all my heart, March next year seems so far away
Looking forward to the next time you stay
Love you both with all my heart and always will

Two Very Special People

I have two of the most beautiful people in the world for a short stay
My SPECIAL sister Liz and Brother in Law Michael, hope they never go away
Each time it is harder to say good bye to the two you love dearly
Not long married, wonderful to see, they love each other clearly
Both lead very busy lives, Michael and Dizzie as well
To squeeze in time to come and see us must be as hard as hell
Not looking forward to saying goodbye, but, memories will last
Memories wrapped in genuine LOVE are the main type Mentia will let you keep from the past
You both are very special and are kind, loving and understanding to me
Not many people are like that you see
Welcome to a vey strange family, Michael, we both ended up with the best, fortunately

Happy Birthday Liz

The day gets closer as I eagerly await for Liz and Michael to arrive Excitement builds, really can’t wait for Sunday morning, seems so far away until we meet at the airport after we drive
Happy Birthday to my beautiful sister, love you, miss you and can not wait to give you a big hug at the gate if for that long I can survive
Hope you get spoiled rotten for that is what you deserve
You are the only sister I have who has love in reserve
Love you more than life itself, so, go out and enjoy yourself and have a ball
You are my very special sister and to me you stand six feet tall

Not The Norm

Talking to other people with dementia from all over the world is great
Even if some do not understand “G’DAY MATE”
It is such a relief to talk to people who share similar stories as well
You know that you are not alone and we have a few laughs and yarns to tell
One thing that is common amongst the majority is misdiagnosis or being told to go home and prepare yourself, get all of your affairs in order, the end is nigh
You will be in a home, the future is bleak, things will not end on a high
I was told, that average life expectancy for FTD is seven years, but,this does not mean a thing
Enjoy every day, who knows how long you will last, five, ten, twenty years or more, I do not know, this to it has a better ring
One thing he did say the episodes that I have will one day become a permanent way of life
This can’t be so, this is me, bullet proof as I looked at my wife
The scans tell it all, they do not lie
I am fortunate to have a network of people and family who understand, who keep me busy, mostly on a high
Do not lay down and die, challenge youself, do something that you like
Tell Dementia to take a hike

Sunday so far away

Sunday, seems so far away
Liz and Michael are coming to stay
They are so kind, loving and understanding of me
Liz to me is the caring, loving sister, every body should have in their family tree
I love you guys with all my heart, not many people would do what you do
Most people tend to stay away, no contact at all, that is their problem, I only care about you
As brother and sister we share a unique kind of love
It is not a bond, something greater, sent from above

Journey of Discovery

I have been on a journey of discovery for some time now
Don’t know why or how
Explain it if you will
Writing each one has been a a thrill
For this is number 50 writing about feelings now and in the past
Often I asked myself, will this last?
Now that goal is reached, I do not know what will happen today or tomorrow
Hopefully, I will continue to write about Mentia, happiness, and sorrow

All Mixed into One

I was sitting here thinking, well that day is done
Another day closer to the end and then some
There are good days and there are bad days

There are happy days and there are sad days
Philosophical as this may sound
It is what I go through every day as a person living with dementia as I try to keep my feet on the ground
I have to stay one step ahead, beat this dam thing that is eating away at my brain
To keep the brain busy is a real pain
To have to stay in front of this is a major task
Positive, smiling all day long, appearing to stay strong is a major ask
Carers, 24/7, I feel like a constant burden to everybody in my life
This I do not let surface often as this will greatly upset, my family, my wife
I will bounce back tomorrow, positive and strong
I know it will last all day long
Good days, bad days, happy days and sad days all mixed into one called “LIVING WITH DEMENTIA”