Live In Caregiver – One Day At A Time – I Still Have Hope

September 1, 2015, Ange, A Creative Touch, Journey So Far, Uncategorized, , 0

I am a live in caregiver by default. I care for my adult daughter who still lives with me because she is unable to care for herself or her daughter at present. She suffers from mental illness in the form of developmental complex post traumatic stress disorder and also has an adult ADD diagnosis.

How Many People Know What Being A Carer Involves?

Many people don’t realise what being a Carer involves, especially a live in caregiver, who is in their caring role for 24 hours per day, 7 days a week, and the impact this role has on their lives on a daily basis. Some carers or caregivers depending on which name you prefer to use, every single day of their lives face the possibility of a domestic violence situation or an abusive episode, and more than once.  Not all carers go through this, but many do, and suffer in silence for it.

My Creative Genius Let’s Loose

I put pen to paper and wrote a poem describing what it is like, and has been like, for me to live with my daughter’s childhood Leukaemia resulting in the more prominent and long term mental illness we now suffer. Once she was finally diagnosed, some 22 years later, I felt a glimmer of hope that this madness might be over soon. Here is what I wrote in my creative genius back in 2013.

 

At this point I should warn you that this poem is long, so grab a cuppa and a snack before sitting down to read this. You’ll thank me later.

I Love You My Innocent Child

 

I love you my beautiful, innocent child

What a wonderful feeling, the day you were born

So innocent and free, a future of possibility

I love you my sweet, innocent child

 

When you are hurt and sad, angry and afraid

my arms hold you tight, round your shivering frame

I love you my fragile, innocent child

 

I try so hard, to protect you from ‘Them’

The Judgers, the Teasers, the Bullies, they’re shameful

I love you my sensitive, innocent child

 

There are people out there who can’t see the real you

Judgements cast by others, are so far from the truth

I love you my valued, innocent child

It’s getting harder each year to keep you from harm

in Physical, Psychological and Emotional ways

I love you my tender, innocent child

 

As the years go by you hold everything in.

My love can’t seem to reach the person within

I love you my dearest, innocent child

 

My love has never, been withheld from you

It’s all I’ve been able, to freely give you

I love you my precious, innocent child

 

My heart breaks, every time you cry,

I just can’t help you, no matter how I try

I love you my distraught, innocent child

Then breaks even more, when at me you fly

In your mind it seems, I said the wrong thing

I love you my manic, innocent child

 

I can’t understand your anger towards me.

You scream at me, swear at me, emotionally blackmail me

I love you my worrisome, innocent child

 

What did I do to set you off this time?

Bruises on my arms, my chest, with such hate in your eyes

I love you my scary, innocent child

 

You curse me, you hate me, you claw at my face

Then fall in a heap, and want just to be loved

I love you my frustrated, innocent child

I see you curl up and want to die

It’s no wonder you collapse, and not want to try

I love you my lonely, innocent child

 

What a horrible life you’ve been forced to live

With so little support, yet so much to give

I love you my amazing, innocent child

 

Too many comments, advice givers to deal with

Invisible illness has its non-believers

I love you my diminished, innocent child

 

I cower away, arms protecting my head

Not sure if next time, will be so bad, I’m dead

I love you my psychotic, innocent child

I lay awake at night, wondering what next to try

When all attempts to get to through to you, fall on deaf ears

I love you my flailing, innocent child

 

More years have gone by and help still has not come.

I’m not sure how much longer, I can keep going on

I love you my crazy, innocent child

 

You break my things and smash up my walls

I’m afraid one day, you’ll go one step too far

I love you my distant, innocent child

 

You run out on the road in the hopes to end it

Or lay on a car to stop someone leaving you

I love you my anguished, innocent child

The neighbours all hear the commotion in home

Silently condemning the people inside

I love you my embarrassing, innocent child

 

There are times I’ll admit that I wanted just to leave

But my child would’ve been left without safety or protection

I love you my tiny, innocent child

 

That Monster within you, is not the real you

We can’t let that ugly, ogre win

I love you my battling, innocent child

 

It wasn’t always like this, I remember a time

When we once danced and laughed, and clowned around

I love you my giggling, innocent child

The day you became ill at nearly 4 years old, I died a bit inside

So young and untainted it was so hard to fathom,

I love you my sick, innocent child

 

They cut you, they pricked you, dosed you up full of chemicals

I watched you change before my very eyes

I love you my confused, innocent child

 

I asked what might happen with all of these chemicals

They said don’t worry, it’s better than being dead

I love you my altered, innocent child

 

Time moved on and they said you were better

But something was wrong, that it seemed only I could see

I love you my changeling, innocent child

I stood by you when others gave up and abandoned you.

Or refused to believe there was something amiss

I love you my misunderstood, innocent child

 

It was just you and me so I did the best I could

Forgive me if sometimes I got it a bit wrong

I love you my unique, innocent child

 

You always have been a hard nut to crack

So I was left to work out for myself and fill in the gaps

I love you my elusive, innocent child

 

I know it’s not you, but the monster inside

You weren’t born this way, we’ll just do our best

I love you my dysfunctional, innocent child.

This is not your fault, you are not to blame

There is no need for you, to feel ashamed

I love you my frightened, innocent child

 

All is not lost, I will never give up

Until the day comes when we get it right

I love you my oddball, innocent child

 

All you need is to find some peace.

So you’ll finally and deservedly have some relief

I love you my weakened, innocent child

 

I’m willing to try things others won’t deign to

No scientific proof makes alternate healing taboo

I love you my pure, innocent child

If I find testament to a method, that’s next on the list

Only positive thoughts, will foster healing and growth

I love you my stalwart, innocent child

 

Finally we have found a glimmer of hope

A diagnosis of sorts and some skills to cope

I love you my wounded, innocent child

 

Twenty years on and a light we see,

A hope, a chance, a possibility

I love you my experimental, innocent child

 

Twenty years rich with chaotic hell

You’ve lived with such fear, and nightmares and loss

I love you my churning, innocent child

Our lives have seen extraordinary turmoil

It isn’t just you who lives through this mess

I love you my turbulent, innocent child

 

The tables I feel, are about to be turned.

A new life for you, now we know our next move

I love you my intelligent, innocent child

 

The signs are there, we are making some progress

A clearly articulated, expression of thought

I love you my willing, innocent child

 

The monster at last has a name, PTSD with ADD

Brought on by brain injury, and childhood illness

I love you my disconnected, innocent child

Words from ‘Forest Gump’ spring quickly to mind

The box of chocolates, and not knowing what you’ll get

I love you my trippy, innocent child

 

But it’s no box of good chocolates, PTSD is no picnic

Never knowing what mood or behaviour you’ll get

I love you my hair raising, innocent child

 

I don’t doubt for a minute there’s a long way to go

But it’s more than we could hope for, to at least have direction

I love you my focussed, innocent child

 

You have always been an intelligent one.

Which is why it’s been hardest on you most of all

I love you my gifted, innocent child

I’m so glad now that I’ve never given up

Nor am willing to believe, there is no cure

I love you my tough, innocent child

 

You deserve a medal for what you’ve been through

To still be in, the land of the living

I love you my disturbed, innocent child.

 

Don’t give up now, please hang on a bit longer

We are so close now, to making things better

I love you my depressed, innocent child

 

I know we are just on the cusp of a change

I know you can do it, and so can I

I love you my erratic, innocent child

We still don’t know how the cards will land

But I’m so glad we’re made of the ‘strong stuff’

I love you my beautiful, innocent child

 

The End

(or should that really be, The Beginning?)

Written by Ange

In loving salute to my daughter

I am so proud of you

 

May you always find the support you need in me

And find the path a much lighter road from this day forward

I love you my wonderful, fantastic, sweet, beautiful, and healing, innocent child

 

October 23rd, 2013

 

So if you are a live in caregiver, please know that others can relate, and may even be going through similar ordeals. You should salute yourself and know that it takes a special kind of person to do what you do and let’s hope that other people will see a glimpse into what life might be like for you by reading this poem.

 

Thank you for allowing me to share my heart and thoughts with you.

 

Warm Wishes

Ange

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