Together we meet

Once a week I am the luckiest man alive

I get to chat with my special friends who give me inspiration to strive

We chat, laugh, solve the problems of the world and sometimes cry

There is no chest beating, no one has to try

People who do not have dementia fail to understand why we enjoy it so

Even though we all live with dementia we still give a life a good go

Never giving in just accepting changes even if initially with disbelief

Dementia is like having your heart and soul robbed by a common thief

So, every week meet, greet, chat, show, look and sometimes even cry

One common theme that is strong between one and all

Love, friendship, and above all caring for one another is the call

I love honour and respect every one of you guys and love the way you have always supported and shown love to me and Sue beyond our wildest dreams.

I wish you all love happiness and peace every day of your lives and do so much look forward to seeing you today

LOVE YOU

Tears rolling down my face

Dementia came calling again today and broke my heart

What happened tore out my heart and soul and tears they did start

I love to help our grandson with yr 11 English assignments

Not that he can’t do it just needs some little refinements

Banter back and forth until all mistakes are made right

I will write, he will say , uhm, no not quite

We both then laughed as only our strong bond could show

His latest assignment proved too much even with me going slow

With a crushing blow realisation set in that dementia had robbed me of a love and a bond

A bond so strong that my soul was ripped out knowing from our school work we did abscond

Tears rolling down my cheeks, never have I felt so helpless, full of despair that dementia has robbed me of such love between my grandson and me

Comprehensions now

Dementia affects the people you love the most in the harshest of ways

Often bearing the brunt with memories which must hurt and surely stay

Dementia can be and often is so cruel for us when we find out about new symptoms last

It is not until a dispute over lack of comprehension that hits you hard and fast

Inability to comprehend simple English is now a task

This  has been going on for some time so I am told

This leaves me feeling ashamed, angry and sad, that I have hurt the one person that I love so much leaves me feeling cold

I believed it was due to medications recently increased

Now reality has set in and I feel like another part of me has deceased

Loving someone with all of your heart and soul is not enough

When DEMENTIA steps in it really is tough

Dementia versus pain

My future is mapped out for me in two very uncertain ways

One is dementia with a decline in cognitive abilities, memory loss and more, increasing every day

Some may choose to never believe what different scans, clinicians, radiographers say and more

There will always be a range of varied non-believers that’s for sure

The second is by far the most frightening of all

I will end up in a wheelchair, that’s the specialist’s call

All five disks in my neck are slowly decaying and in such a state

Bone on bone, bone in nerve, hole in nerve, all part of my fate

C4 is bulging and compressed which is causing concern

My ever increasing and changing medication is such that Sue must learn

Soon as pain medication becomes less and less of an option

There will be no medical concoction

Some will say that is a long way down the track

I will trade places with you for just one day then will not be coming back

Fight on I must and will, until that day, until

Food for thought

All too often stigma raises its ugly head in a completely new way

Disbelievers who refuse to be told or listen to what you, doctors, or clinicians say

Those who use their position in a profession that defies their mythology used, to say the least

Incapable of making decisions am I, with this, I will have a feast

Sit on your arse and listen up good

A lesson in dementia is coming as well it should

All of a sudden your face glows red like an apple freshly picked today

Dementia just like cancer is incurable, it is here to stay

To a very noble, loved, honoured profession you are a disgrace

What would happen to me if I publicly humiliated, discriminated and violated your basic human right????????

 

2017 and beyond

Some of us have family we grew up with and yet we do not know why

Why they do not believe dementia is now part of my brain, nor do they try

Sadness, frustration, anger and disbelief

I don’t have to call him that is such a relief

My wish is a simple one, that’s how it appears to me

Make 2017 the year of belief for all including you and me

You see I have dementia and I am not seventy five or even eighty plus

You can’t see my dementia, I will continue to function without any fuss

I refuse to tell you how I really feel

You see I promised myself that for 2017 and beyond my beliefs you will not steal

I have made a promise to myself that in 2017 I will not speak ill of any human being at all

I can call you whatever I like up till then, that is my call

Expletives a plenty as I am sure you are aware

Oh, sorry I thought you really cared

All is well and good

Recently at a family pre-Christmas gathering something became very apparent to me

My wife, children, grandson and one other you see

All is fine, well and good

Great food and company as it should

Dementia not too bad as many a conversation was held

Young people speaking of good times past and present as well

It suddenly dawned on me that there was only dementia and me

As conversation and noise increased I felt there was only dementia and me

Never in a million years would I say anything against my family

In years gone past I would have joined in the conversation you see

Withdrawing from conversation caused by dementia is cruel to a person like me

As more people and children arrived I went further and further into my own little dementia world of being alone

Eyes upon me waiting to see what I would do next does not help me at all

There is nothing wrong with me it is just my dementia, that’s all

Revealing

It is now December and Christmas awaits

Maybe changed symptoms will abate

Just like Santa, they are real

People treat me with exaggeration as if nothing I say is real

No time to listen, care or refute

Don’t need confrontation or a dispute

As pain increases and memory and cognition all decrease

Life goes on, happy, positive, alive, better than those who have deceased

Have to stay positive and be more aware and kind

Otherwise, friends will leave me behind

Pain getting bad, take another pain- killing pill

An hour later pain is here still

Embarrassed and red

When you first find out you turn around 180 degrees and ask why

I can’t believe that dementia will be what they blame after I die

They are all wrong, I know I am dementia-free

If I have got it who do I see

That’s right, I haven’t got it just ask me

MY wife looks at me and says it will be a hell of a fight

That gives me a hell of a fright

Then I ask where do you think I can go for help

I don’t know, just don’t dribble and yelp

A lady the other day said I can help you

I looked at her and said only if you have to

Dementia Alliance International would be good for you as well

Might as well try it as I have been through hell

Ok, I will give it a go, I finally said.

Support groups are the missing link, even if you get embarrassed and red

That’s where I go and now I am confident and feel really good

Much much more

Do you often think what if tomorrow never arrived at all

Why did I not do this or that yesterday would be your call

Would that have made you enjoy last day much more

I will guarantee you would have smiled, laughed and much much more

Why not treat tomorrow as if it is your last