Hello

International grief poured out this week

For some it is attention they seek

For those of us that knew him well

Emotions, tears, laughter and sorrow at the same time do swell

He touched so many lives in many different ways

Quietly spoken, powerful words about how dementia affects our days

Hello was how he opened his speech

It was about advocation he did teach

He told many they were wrong

Academics, professors he told them and he was strong

” Hello, my name is Richard Taylor “

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RICHARD TAYLOR

I find it so hard to sit here and write

Knowing my good friend is no longer in sight

Shedding a tear is easy for a man loved by one and all

At his best he was over six feet tall

Yet another tear is shed as I think what this man has done for me

Quiet, gentle, witty, wise does not describe him fully you see

The GODFATHER  of advocacy of human rights for us all

He was known well from all corners of the globe, always accepting calls

The struggle and pain was more than any human being should have to endure

Suffer no more, my good friend, of that I am sure

Your memory will live on in a legacy with me from now on

With advocacy  now even more so, my main aim from now on

Each time I speak in public you will forever in my thoughts.

Vale Richard Taylor

INCOMPETENCE

After months and months of  being controlled by a provider that is supposed to be providing respite for us every two weeks where I have repeatedly asked for them to keep the same person. Every time they change the girl which completely unsettles me due to unfamiliarity  causes mr a great deal of stress and anxiety.

Last Thursday they tried to send a new girl without notice, saying the regular lady was sick. This has been used on several occasions when the scheduler, incompetent as she is by using the same excuse.

I ended up quite infuriated and vented my anger at the people concerned and ended up by cancelling the service stating that they did not know anything about dementia.

Sometime later another lady rang me to promise once again that she would assign me two ladies to come all the time incase one is sick or away on leave.

I reluctantly agreed and said that If they went back on their word as they have done before then I will cancel the service.

This experience left me upset and unable to settle down at all. Increased anxiety levels ans my heart feeling like it will jump out my chest.

My energy level was and still is  ( 3 days later ) the same with no energy at all and the same feeling in my chest.

That was Thursday, it is now Saturday night and I have just told my wife that I will go to the doctor tomorrow and why. She is now worried and wants me to go now to the doctor.

I am usually full of energy but my level at the moment is so low that i am having trouble doing anything.

I normally don’t complain about things that are affecting me  but i felt that the incompetence of a provider who is supposed to be providing care for PWD, actually know little about dementia and how to treat a person with dementia.

No idea

Dementia where one size does not fit all

Just like some people are short some are tall

Some talk a little, some talk a lot

Talk over the top, but in, always. ” I am ” which generally means not

Actions speak louder than words in this case

Ambition never meets ability in this race

Poor souls don’t know they are being rude

Make out you are listening, a nod of the head  thinking what you should do is rude and crude

Commonly called verbal diarrhoea

You keep thinking this dude has no idea

With little money

Most of us advocate for the betterment of people with dementia as often as we can

With meagre pensions for little support for which i am not a fan

A band of so few with so much to do

Advocation is a must for awareness and education and we will reach you

With very little money and no complaints

I carry on each week without restraints

If I had to go without food, that would be fine

Money is short and things are tight and get worse but I won’t whine

I would do all of this again in a heart beat day after day

Passion is such a driving force

How exciting is this

Listening to new music makes me feel good

Tunes on my ipad I listen to like I should

Many many tunes that are all new to me

Perhaps they played yesterday, I can’t remember you see

How exciting is this

Dementia has given me something  of which I am remiss

Exercising is now such a joy

LIFE

Just like dementia, cancer knows no boundaries at all

When you are told it is a terribly cruel call

Makes you appreciate life and what we have be it good or bad

Most of us have quality of life at the moment and we are glad

Dementia will win in the end

For now life has been put into perspective, a message it did send

Life can be so cruel it seems to us

Some would say why all the fuss

Life as we know it is a gift for all to share

Value your life and say I love you every day and night to show you really care

My day is complete

Reducing STIGMA means there is so many things to learn

To be treated as a normal human being is what I yearn

Turning STIGMA around is not an easy task

When Ignorance arises, questions I do ask

Tell them how I used to be, what I am now

I hear you ask but how

Tell all that you know stand tall and proud

Bombard them with facts, figures, speak out aloud

I ask them what they know

Shake my head, the truth I will show

Most do not know through ignorance that dementia affects the brain

The frown on their face tells me the truth is such a strain

Oh, dear dear they were wrong what a shame

That’s one less with a million more to train

To educate one person makes my day complete

99% Imagination

People’s perception of dementia leaves me aghast

Often I think, how long will it last

They don’t get it, it’s in my head

Be different if I didn’t have an arm or a leg

Ignorance, so-called experts, fuelled by 1% truth and 99% imagination

This is a constant source of frustration

You look normal, sound normal, act normal, they say

They do not know the true price you pay

Only when you say, cognitive skills, concentration, comprehension and memory loss, just to name a few

Loss of these on a daily basis is for me nothing new

Nothing to say

It pains me so to hear such a good friend is in such pain

Little or no chance of health will be regained

Cancer only ever visits people who are genuinely superb human beings

Character, honesty and integrity as never before seen

Whit, charm and education abound

Possibly the most important person who has publicly represented us going  around

What do you say when everything seems the wrong thing to say