Winter is not so bad

Winter brings snow, sleet, frost and rain

Making early morning rising a pain

Underneath the covers, all tucked in and warm

Half asleep, listening to the storm

Wind chill factor of minus something

All relaxed, warm and cosy, till the alarm gives you it’s offering

Damm it’s cold, why didn’t I wake up 30 minutes ago

Turn the heater on and back to bed I would go

Cold as I maybe, at least I am warm with a roof overhead

Would I rather a thin blanket and the stars instead

Winter at our house is not so bad

That we have homeless people is so cruel and sad

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Procrastination

Today I will, no maybe I won’t

Maybe I should, nah, maybe I shouldn’t

Do you think I should, maybe I will

Maybe I will, then again, maybe I won’t

Should, shouldn’t, maybe which one should I choose

If I don’t choose I will certainly lose

Will I, won’t I, maybe I should

Things have changed since then

Now it is why not, where and when

Ask why not when you are asked why

Or you will forever remain shy

I was once told to always swim upstream

Now this no longer a dream

Thank You, Richard

RIP

Take away what you will

Speaking from the heart when giving a presentation is a given for me

Hard for some, easy for others who do this continuously

It is heartening to hear that a shift in attitude has occurred to many, if not all

Baring your heart and soul in a way that many will recall

Learn as you may, take away what you will

Ask, listen, learn, lead and do not push, as together we all climb this big dementia hill

Always remember that inside nothing has changed you see

I am still here I am still me

Respect and dignity I do ask, at all times, for the rest of my life

A lifetime sentence will always be there for me, my children and my wife

Sacrificing everything never complaining at all

Talk to me, not at me, and never about me at all

Including people with dementia on boards, committees and in all decision making is imperative you see

All very important to me

Nothing about us without us

Tokenism

I am often asked  to train staff about how to treat us

 Being  people who are the true experts who speak from the heart without any fuss

As hard as we try it seems tokenism is here to stay

Being told, you will be speaking on the last day

We need you to finish with a bang, knock their socks off, to say the least

Accordingly a speech befitting the prowess of a professor is duly prepared with words a feast

“Being used” is a terminology I will never get used to and leaves me seeing red

Making me so angry and frustrated a tear I do shed

Chocolates and flowers for us while professionals are duly treated with compensation and respect

This is now the norm when those of us who so expertly pour out our heart and soul know what to expect

Dementia means having to accept all the normal day to day issues that we face

Then face being used, morally abused and represented in an insulting  and tokenistic gesture to pacify the morality of the human race

I sit in my room

I sit in my room and stare

The staff are all too busy  to care

Who is that kind and gentle young man

He said he will come by whenever he can

Why am I here in this strange room all alone again

Maybe one day they will ask if I want a shower every now and then

Then I would not stop them from undressing me

They make me go to the toilet even if I don’t need a pee

It would only take five minutes to sit and talk with me

Then they might treat me differently

Naysayers

I am often asked why when I tell people what I do  each and every day

My life is now devoted to DAI in each and every way

Repaying a debt that has now become my passion

It seems having a go is out of fashion

It is funny how having a disAbility gives me the Ability

The drive to strive to the end

Naysayers now with tongues now held no longer offend

Ability and passion are not just a given to many and all

From mistakes comes learning making you stand tall

While I can still talk and breathe I will have the will to strive

I might have been handed a huge blow but I am still here and I am alive

Naysayers, naysayers, what say you now

Stand up

Stand up and be counted is how the saying goes

Help when help is needed brings no shows

Always staying in front of the fog

Caring, passion and love is never a hard slog

Planning for new adventures is under way

What would happen if I did not stay

Maybe passion is ninety percent pride

The main reason, stop people from having to hide

Every week brings a new reward for me

Every person is family you see