our son scott

Scott is our son of who we are very proud Sometimes when he exercises, sometimes his music is loud
He has lost so much weight and is so fit
compared to when he was younger all he did was sit All the time he looks out for us
He worries and cares, works to hard, but enjoys the money and sees this as a plus
His new holden ute is his baby and treated with kid gloves, kept clean and shiny
makes friends easily especially those who are tiny Rides his bike one hundred kms or more
Works out in the garage for hours, not like before

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SLEEP, NO NOT FOR ME

Sleep appears to be an issue that effects many or most people with dementia each night
I like many average 3-4 hours a night any more is just out of sight
I am often asked, How do you do it? The politically correct answer is, It is beyond my control, it is a part of Dementia with the next answer being no there is no cure
The real answer and I am sure there are many, some that could not be printed, would be many and varied I am sure
A cure will one day be found by a highly Intelligent scientist and his/her team.
By then I like many others would have crossed over to the other side by then sitting by a mountain stream
I promised myself I would not go there today as those thoughts make me think about the end
Stay positive, get busy, negative thoughts quickly need to be turned around to positive thoughts to my brain I must send

Today is going to be a bad day which I do not have many of at all

I hope negative thoughts tomorrow do not call
OH, well, I better get up out of bed and start this new day
Bye for now, if I keep on writing negative thoughts will continue to stay

My sister Liz

Liz is my eldest sister, I love you very much
You come up to stay a few times a year or we talk on the phone to stay in touch
Even though you are busy with your children and grand children as well Married to a guy that is kind, considerate and the love between you guys is easy to tell
I look forward to your visits so I can give you a big hug while I still can stay in touch as things are changing day by day
My greatest hope is that I will recognize you when my brain no longer functions as it should, so for now I will cherish and enjoy the time we spend together every time you stay
It will be harder to say goodbye each time that you come
We have something that no other family member has, a bond of mutual love and respect for each other, which not motivated by greed, self gratification and glory and then some
LOVE YOU LIZ,the best sister I could wish for, Love you heaps

day in my shoes

I lay here in my bed awake still 
sleep I know at some stage I will 
morning seems so far away  
sometimes I wonder if Mentia will stay 
I often wonder if I am really mad 
or if this is real it is really sad 
frontal temporal lobal dementia they say 
then younger onset dementia  all here to stay 
will get worse won’t get better I am told 
That there is no cure makes me go cold 
I am amusing to my family, wife and all when I speak of a long lost past 
truth gets stretched a little as memory falls from my grasp 
it is about the only bright spot for my carer my wife the love of my life 
one day soon Mentia will go away I say 
Suzie says oh I think it’s here to stay 
People stare look at me strange they don’t know or care 
if they understood they wouldn’t stare 
help me to make them see  it is it’s really me 
Cognitive functions are getting harder each day 
simple tasks getting harder now frustration that this will stay 
always look forward never look back 
REMEMBER to say I LOVE YOU every day  
could be the last thing you get to say 

HELLO LONELY NIGHTS

Hello lonely night again guess what I can’t sleep
Deep sleep is a dream I can keep
I think a lot about Suzie my wife carer and love of my life Thoughtful caring loving strong tough yes that’s my wife
You see her life is different in so many ways now
Full time carer is the hardest job with only love as a know how
24/7 is a carers role think about that no matter where you go
I can’t be left alone not for a minute or I could be a no show Mentia comes in the blink of an eye dam thing stays far to long
This leaves Suzie lonely and sad even though she is strong No matter how much we love and care for each other
When mentia is here that’s time lost between us we’ll never recover
The look in her eyes says it all
I am so proud to me she stands ten feet tall
The respite lady comes every two weeks to give my darling a rest
Just think about it three hours off in two weeks but it’s a test According to Suzie It is her responsibility, her job but that three hours must be so good
There is a feeling of guilt leaving me with someone who is less understood
Remember 24/7 it is very hard go to bathroom whilst keeping your sanity
Constantly calling are you still there at least there’s no anger or profanity

MY SPECIALIST

My specialist seems to think that both will soon be as one
This new one leaves me feeling done
Not knowing where I am or what I am there for
Can’t settle have to move thats for shore
Feels like a dark cloud covering half my eyes
Renders me feeling numb, have to sit can’t look to the skies
Very unstable, more than usual for me
Even though this is real, it leaves me with a feeling of disbelief, anger and stupidity you see.p
I know these feelings are wrong yet the symptoms last so long
This can happen at any time without a moments notice, normal one minute then you are gone
Strange, yes, real yes, makes sense, no
Explain that to someone without Dementia, give it a go My other episodes can appear also with no notice at all Don’t remember a thing, speak funny for up to six hours they last, sometimes I fal I fall

HAPPENING SO FAST

hings are happening so fast now I find it hard to grasp.
Just like a fairy tale, i wonder will it last
My memory loss increases day by day
Somehow I will have to find a way
Sticky notes every where, desk calendar on the wall
Can’t wait for the first call
hat will mean the start of CAFE LE BRAIN
Something I will enjoy, plenty I will gain
Kate and I will co host the first Aussie one ever
Let us hope the end is never
Friday will see something HUGE for me
Becoming involved in American Virtual eleconferences
blows me away
Very friendly people that I hope will stay
A warm welcome from all involved for me
Global friends I have now for me only to see
hanks to Kate for asking me to have a go

I CAME TO THIS MEETING

I came to this meeting, lack of knowledge, with expectations high and low
Hard work, two long days, headache from brain usage high versus low
With limited input and lot of trying to absorb it all
I have to remember before you can walk you must crawl
So much to learn and absorb hoping like hell it will stay
Listening with so much intent there is just one thing that I must say
So much talent bought about through experience around this table
I just hope in time I to will be just as able
You are made to feel an equal your opinion really counts as well
After day one my brain felt like it was in melt down and heading for hell
Not being used constructively for so long it was a shock
A rest and good nights sleep to recharge and take stock
Next day cob webs blown away, it’s down to business, here we go
No Mentia episodes at the meeting all day, a couple of times I thought it was going to show
Meeting went well, I became involved, ended up on two committees as well
They say this will keep me busy,I don’t doubt,but as usual time will tell
Met some people who I hope will become friends all with Mentia just like me
Now I have set myself a challenge never before seen
One thing I can tell you is I am dam keen.
Stepping well outside my comfort zone is something new for me right now
Lack of courage or embarrassment, I’m not sure but I did it and I don’t know how
Just goes to show a little push from the right people is all it can take
Thank you Samantha, what a difference to me you did make
None of this could happen without the love and support of my carer, my wife.
To those who came, thanks, for your efforts, I appreciate
I thought I spoke to fast, not enough eye contact for me
I know I had to get it right, read it all I had to do you see
Thank you for telling me I did well
This will help me come out of my shell
Thank you Jane for allowing me time for this meeting

NEW EPISODES

This new Dementia is leaving me feeling like a vegetable. No direction, no cause, just finding myself wondering what is going on. The other day I was out in the kitchen getting my breakfast. I put the kettle on forgetting to close the lid, then just stood there not knowing what to do next. I had to ask Sue as I could not remember a thing. my head has the strangest feeling in it like a hangover, or, driving in a storm and seeing cloud just above the horizon then clear sky below. the cloud line was across the bridge of my nose. above dark and light grey then blue under that. I don’t know of any other way to tell you and it hurts to be typing this. it is now 12.22am and this episode has been going for about 20mins.
The other episodes are still happening where I have a blank look on my face goes blank and I have trouble communicating and talking

MY DARLING WIFE SUE

To my darling wife Sue who I love very much
I remember some good times that help me stay in touch
I remember what you wore when we went to the races
how good you looked, brown checked shirt, jeans & looks that sent my heart into other places
How good it was when we kissed and held each other tight
To feel your body against mine, smell of your hair made everything right Sometimes I wonder what you ever saw in me at all
what ever it was makes me proud and stand tall
Remember when I took you to show you our business and kissed you just inside the door
when you came to Melbourne to see me and we lay in the park, talked and kissed for as long as we could, parting made me feel poor
Being with you fulfilled all my dreams, you were the one I knew from the start
I never did like being apart
Every time I kiss you it makes my heart spin
and don`t forget that beautiful grin
Many a good time was had in Hallett Cresent, day and night
that also helped me to know it was right
Many more, some I can’t mention, I’m sure, like me, locked away in your heart forever in a day
Thank you MY DARLING for being my wife, my lover and friend, but most of all, the love of my life and thats the way it will forever stay
I know the years we have left may be few, but, my darling, I will never forget the love, devotion, caring and emotion that came my way
I can only hope and pray that I have returned as much
This I have written just for you and only you as such
Keep it where you will
LOVE FOREVER THANK YOU SUE
P.S: I still owe you the moon.