16 Years And Still I Ache

16 years ago today, it was the last day of Ken’s life. His dad and I had no idea when we said goodbye that day, it would be our forever goodby. 
I don’t know at what point during that day, Ken, decided this would be his final day. Maybe he didn’t decide until the next day, but he died in the early hours of the morning so I sense his decision was made on this day, 16 years ago. 
I miss you every day my precious son. I often wonder why it is that you’re gone and yet, I’m still here. It is never right for a parent to outlive their child, it goes against the natural order, but then life is often shambolic. Dad worried so about my health yet he died 10 years after you, leaving me the last branch of our rare and beautiful family tree. 
I love you, Ken. xxx 

 

The Passing Time

It was that time 

Somewhere in the middle

Of blackest night 

And morning light

She sat quietly  

Remembering 

Paramedics 

Mica unit

Pump  

Breathe 

Zap 

Pump 

Breathe 

Zap 

His chest 

Rising 

Falling 

Hope 

Rising 

Falling 

Needles piercing his body 

Terror piercing her being 

Eventually it was time 

To gently removed the tubes 

Disconnect the monitor 

Call the Coroner 

She’d covered his cooling body 

With a thick burgundy blanket 

Lay beside him on the floor 

Held him 

One last time 

Whispered her loving goodbyes 

She stares at his empty wingback chair 

Honouring his dying time

They’d been together forty years 

And yet

The six years since his death  

Felt like a lifetime 

Tricia 14/07/2015

  

Moments of Intimacy

  Moments of Intimacy

In the last couple of years of his life
He developed a beautiful habit
He’d often kiss the top of her head
As he walked behind her chair
She once asked him
“Why don’t you do it every time?”
He smiled and replied
“If I did
It wouldn’t be quite so special”

Tricia 5/2015

Anni’s Letter

Today is the anniversary of the birth of, Krystina, a daughter of my dear friend, Anni. The following was written by Anni in 2002. I share it for Krystina, Anni, my son Ken, myself, and all mothers who have outlived their child.

If I really sat down and thought about it
Would I be able to put on paper the words?
Sanely, without self-pity, or sentimental prose, to tell of your life and your death.
To be able to take out from the inside of me, the thoughts and memories
which are still here?
Here in my heart, my fingers, my eyes and my ears,
each part of me has a different memory of you.
The look of you I see and the sound I hear is your voice or your laugh.
One month, six months – a decade
It makes absolutely no difference what the time span is.
People tell me time will lessen the pain.
Time will not lessen my pain, my sadness or my loss
In fact, it actually makes it worse because the futility of your death will always & ultimately rest with me.
You are my child – my responsibility – my love.
The only emotion, which does abate, is my anger.
Most of my real pain is rigidly suppressed
Underneath the plateaus of feelings too confrontational
to face.
Inside of me there are parts which are destroyed, not whole.
Where emotions & thoughts ceaselessly slip unannounced
into the reality which is known as day to day living
and which continues for each of us who love you.
But I keep all of this under control
With the psychological rigidity I am determined to maintain
I had not realised that my ability to control sorrow was so strong,
until, those few brief moments when I actually let myself exhale
and I feel for just the tiniest sensation, a wave of peace,
whether it was from a memory of some joyous thing –
An unexpected happiness which descends lightly upon me
Like the soft, consoling pat of comfort on my shoulder.
Or the scent and the touch of hair brushing past my cheek
Or a child’s innocent stare, quizzical, straight into my soul;
Or the sheer delightful sound of my grandchildren’s laughter.
That fantastic giggling, chuckling, chortling sound.
Or the sometime hedonistic abandonment to alcohol.
Or a descriptive passage from a book,
Words which verges on perfection and
Offering such hope to my spirit, no dark damnation.
Or the understanding of strangers who offer their experiences
Their commiseration – without judgement
Sometimes I stop whatever it is I am doing
Suddenly, for no reason
These moments are a puzzle to me
Because they bring with them a sense of expectancy,
Unfinished words, things not yet said, hanging on the air.
Hovering, waiting in a shadow just there ….in front of me,
A movement of air and that familiar voice.
With a “hey mum, look what…….” it seems so normal.
And the strangeness of this normality is quite acceptable to me
A funny something – unfathomable and consistent
This persists in hovering and constantly pushing at me.
All the while laughing deliciously into my ear,
Prompting me to remember arcane, shared conversations
Dreams are constant an accepted part of the night now.
Sleeping, falling into that blessed temporary blackness
Hoping it will remain just that – a comforting nothingness
somewhere between the sleeping and awakening
Then nadir returns.
The probing fingers of guilt look for the right nerve,
lingering there for just enough time
to touch the pit of my stomach and create a shriveling,
gnawing, inexplicable emptiness;
this approaches the same plane of panic and confusion
as often happened when you were here.
When the phone ringing in the early hours of morning
would startle me into alertness.
My fear as I grope through the darkness, absolute, suffocating fear
as I struggle to find the faceless, disembodied messenger who will tell me
Death has arrived.
You are lost to me.
My child is in peril.
Or sometimes it was your voice there
and a different, icy dread would claim me.
Your voice sometimes slurred and deceitful
Or whining and beseeching, angry and accusatory
When you were in the grips of your addiction.
Regret was part of your ongoing torment
and black addiction to a powerful and evil drug had won.
Sometimes you clawed your way upward,
triumphant for a short time;
but that short time was so rare
and became more and more elusive
until, inevitably there was no time left at all.
Love Mum

(Written by Anni Leppin)

Forever Love

You told me you would always love me
Never leave me
And you haven’t
Yes it’s over 5 years since you died
Nonetheless your love surrounds me
You will always be
“Only a whisper away”
I look at the 45 year old photo
You carrying me on our Wedding Day
I see the love in your eyes
Just as I saw it in the early hours
Of that final morning
The last thing you did was
Squeeze my hand as you looked into my eyes
The love in your eyes was almost palpable
Your love still carries me through the tough days
Sits beside me during times of peaceful reverie
I still talk to you
Yep not even death can shut me up
You don’t answer and yet I’m still comforted
I know only to well people die
I also know love can live forever.

Tricia 7/2/2015

“I’m Still Here”

Chronic Progressive Life Limiting
Four simple words
That can change one’s life
On an almost daily basis
As my illness progresses
The struggle to deal with limitations
Can be both challenging and frustrating
At present I’m battling exhaustion
Some days holding a conversation
Is more than I can manage
I find I must be discerning
Not squander my energy
Rather I must nurture and use it wisely
So if you don’t hear from me
If I’m not spending much time on social media
Please know it’s not because I don’t care
It’s because I’m so very tired
And working hard to adjust
To the ever changing challenges
That are part of living with chronic illness
I’m not unhappy
Sometimes frustrated with my disobedient body
Occasionally pissed off that a couple of hours out
Costs me a few days in bed
Nonetheless grateful for those
Who make a couple of hours out possible
I find I have much to be grateful for
The constancy of my carers and my sister
The loving acceptance of family and friends
Who make the effort to bring ‘days out’ to my home
Because they understand and they care
Yes I’m exhausted by the battle of existence
At the same time I’m grateful that ‘I’m Still Here’
Still able to live in my home
My place of peace and sanctuary

Tricia 2/2015

I used to belt this wonderful song out, but my ‘song belting’ days are done
Now I simply enjoy watching it. 🙂

▶ 3:22▶ 3:22
http://www.youtube.com/watch?v=USsBVFtzYos
Jun 16, 2010 – Uploaded by Thorneycroft37
Legendary live performance at the Electric Proms 2009. Shirley’s version of this fantastic song …

▶ 3:22▶ 3:22

Day 43: Final Post

Day 43: Final Post.

Peter Short, an amazing man who worked tirelessly on the Dying with Dignity debate, and who, in the last days of his life, got our Prime Minister to agree to allow a conscience vote on euthanasia, died this morning. My heartfelt thanks and deepest sympathy go to the Short family, along with my gratitude for the enormous contribution Peter and his family have made.

Tree of Strength (a poem about resilience)

Tree of Strength (a poem about resilience).

This powerful poem was written by my dear friend, Pooky. It touched me so deeply I felt compelled to share it.

You Don’t Know

If you’ve never lived the reality
Of no longer being able to wash your body
Then
You don’t know

If you’ve never been the person
Who washes a stranger’s body with kindness and compassion
Then
You don’t know

If you’ve never been the person
Who helps to maintain the dignity of those who are ill or disabled
Then
You don’t know

If you’ve never wept in frustration
Because you can no longer manage the simplest of tasks
Then
You don’t know

If you’ve never experienced relief in a carer’s empathy
When you’re having a bad day
Then
You don’t know

If you’ve never had a carer gently coax you
To allow them to put cream on your thin bruised broken skin
Then
You don’t know

If you’ve never had a carer match their steps to yours
Because you struggle to breathe and walk at the same time
Then
You don’t know

If you’ve never had a carer do your shopping for you
Because they can see ‘today’ you have no energy
Then
You don’t know

If you’ve never experienced a carer’s ability
To help while giving you a sense of independence
Then
You don’t know

If you’ve never had a carer clean your home
Respectfully moving your husband’s ashes
Then
You don’t know

If you’ve never seen that same carer
Intuitively do something you wanted doing but hadn’t wanted to ask
Then
You don’t know

If you’ve never experienced terrifying flashbacks because of a change in routine
Been calmed and comforted by the nurse who knows your history
Then
You don’t know

If you’ve never experienced a momentary ‘my life is not worth living’
Yet moved back from the abyss because you have the support of carers
Then
You don’t know

If you’ve never experienced the laughter a carer brings
Known the comfort of being wrapped in a towel on a cool morning
Sat and wept while a carer runs warm water on your back
Because the day is the anniversary of your son’s death
If you’ve never been a carer
Looked after people in the most intimate of ways
At the same time enabling them to experience a sense of independence
Never complained to your client when they’re having a ‘bad day’
Then
You don’t know

You might think you know
But trust me
If you’ve not lived it
From either side of the spectrum
Then
You don’t know

I know my carers are friendly but not my friends
I know there are rules to protect both client and carer
I know there will always be a few who’ll break the rules
I know the majority are good and caring people
I know I’m not allowed to give gifts to my carers
I didn’t realise this applied to Christmas

After all I give a gift to my gardener my postie
My doctors
Their receptionists
Just small things to acknowledge their kindness
These people are not my friends either
But they are friendly and I’m grateful

To refuse to allow me to give a small gift of gratitude
After all I receive at the gentle hands of my carers
Takes away the sense of independence
They spend the year imbuing me with
Do you know how hard it is to constantly accept help
Without being able to give anything in return

When you refuse to allow me to give
An end of year gift of gratitude to my regular carers
And the support staff
Then
I know
You don’t know

Tricia 11/2014

Voluntary Euthanasia

Why is it impossible in Australia
To have the peace of mind
Legalised Voluntary Euthanasia
Would bring
Preachers and politicians
Puritans and pseudo carers
Believe they know what is right
For a person they’ve never met
Where were these paragons of public good
When the small child was being
Beaten
Belittled
Broken
That child through
Courage
Determination
Shear force of will
Survived
Grew to adulthood
Found precious unconditional love
Learnt she was worthy
Entitled to make choices
Grew to love fiercely
Protectively
Joyfully
Unconditionally
Compassionately
Kindly
Survived the not wanting to survive
After the death of her husband and son
Worked to help others
Who were broken by bereavement
Seared by suicide
She now lives alone in her sanctuary home
Traversing the steep learning curve
That comes with
Chronic
Life limiting illness
Trying to find her new normal
Amidst the relentless slipping away of
Mobility
Privacy
Independence
Dignity
With age and growing disability
And the absence of her husband’s loving support
Her childhood vulnerability
Re-emerges
Fears and flashbacks sporadically assail her
She still has a wicked sense of humour
Finds joy in small things
Plays in her fashion
Listens with empathy
To friends and family
Writes to reach out
Shares her thoughts and feelings
Hopefully helping herself and others
In the process
Yet she knows
In the depth of her being
There is one thing she will never again do
Submit herself to the vagaries and vulnerability
Of institutional life
No more hospitals
Her last two hospital stays
Were punctuated by unnecessary suffering
Lack of empathy
Attempted religious manipulation
No care facility for her
Just the thought of them
Brings back her boarding school terrors
She loves her home carers
Occasionally
On bad days
She panics
Fears losing these wonderful empathetic women
For she knows
Without their help
She’d have to leave her home
That’s why she wants
The right to voluntary euthanasia
Not for right now
No
It’s the peace it would bring
Knowing
She’d never again have to fear
Being at the mercy of the merciless

Tricia 2014