Tag Archive: carers


Today it is eight years since John had his stroke. The week has also included Valentine’s Day.

John and I didn’t usually make a big deal about Valentine’s Day but that year he planned a weekend away. So we went the weekend before.

We had a beautiful room in the Blue Mountains looking straight down the Jamieson Valley. The weather wasn’t brilliant and the valley was full of clouds and fog. All part of being in the mountains.

We sat on the balcony on the Sunday morning and watched as the weather cleared and the glorious vista came into view.

John reminded me that I used to sing the lullaby “Down In The Valley” to our children to put them to sleep. I had completely forgotten because the children were by then young adults and it had been so long ago. It was lovely sitting there and being reminded.

Ten days later I sang that lullaby to him in the ICU so that the sedatives could be kept to a minimum. One nurse said, “keep on singing, it works.”

If he hadn’t reminded me of it the week before I doubt that I’d have thought of it. It’s a bittersweet memory for me.

Here’s a link to the song for those of you who don’t know it.

Lost in Translation (Collaroy)

Today I lost my phone.

When I say lost, I mean that it fell down a drain at Collaroy. It’s now most probably floating out to sea with some grommet.

Every Saturday morning I visit my dear friend Jo at Hair Salon Des Arts at Newport. I’m happy to be the guinea pig for her apprentices to learn washing and blow-drying. It’s fun, we have a laugh, and she is a darling friend.

Today I decided to stop in Collaroy and pick up a coffee and a toasted sandwich. All good. Headed back out to the car with said coffee and sandwich, climbed in, chucked sandwich and handbag on to the seat beside me whereupon the phone flew out of the bag and landed between the passenger seat and the door. I toyed with the idea of travelling ten minutes with phone out of reach (even though I don’t look at it while driving) and decided to go around to the other side of the car and rescue it. Just for my peace of mind.

Around I went.

I noticed the big drain below the passenger door.

The thought occurred to me that perhaps the phone was against the door, and that when I opened it, the phone may fall into the drain. I chose to ignore that thought. Well, almost. I stuck my toe under the door where I thought the phone might be.

I was wrong, phone went down the drain. Bounce, bounce, plop. Into the darkness.

At that moment I felt completely alone. All the comfort I take from being connected, from dear friends knowing where I am via various apps, was gone.

I thought about calling someone to help me to retrieve it but know in my heart that my “best friend” was gone. I needed to get in touch with my son but couldn’t remember his number. Hell, I couldn’t remember any numbers. My mind went completely blank in panic. Finally, between Collaroy and Newport, I remembered one number, the number with which I’d grown up. The Dad’s home number. I called him, asked him to call my son and tell him to get in touch with me before he went away for the weekend.

That sorted, I remembered one other number, my best mate (and boss). Called him from the salon and told him what had happened. We agreed that I’d done a really good job of losing my phone as I had no insurance, and hadn’t backed up for nine months. This is why he likes me. I don’t do things by halves.

What has done me in is my reaction. I wander the planet with phone in pocket, feeling connected. Suddenly I was on my own and it made me feel desperate for a while. Noone really knew where I was and I was completely disconnected.

There was a minor panic.

To say nothing of going to the special hell that is Warringah Mall on a Saturday afternoon to replace the phone. Plus, what would it cost?

Anyway, my hair looks really nice. It’s a bit shorter.

I gritted my teeth and headed to the Mall. A darling young fellow sorted it in ten minutes (thanks Vodafone) and I now have a new phone at no cost. I’ve lost nine months of data but so what? I now have my real and imaginary friends back around me.

My response completely surprised me and made me think. How could I have felt so helpless without my phone?

There was a feeling of responsibility: nursing home can’t reach me, boss can’t reach me, family can’t reach me. (Yes, there are days when it goes in that order. After all, the kids usually know where I am.)

My need to feel needed was thwarted because noone could reach me. My need to reach out was rendered impossible.

Apparently I’m a cog in the modern engine.

I’m now connected, once again.

Spring Weekend

He’d be asleep now,
It’s 7:43pm and it’s dark.

Spring.

I have flowers in the house,
Picked from the garden this evening.

All around I can hear neighbours
With friends over,
Smell their barbeques
And listen to their joy.

That used to be us,
Boy at the barbie,
Me inside,
Organising the salads.

Spring.
So many flowers.
So much love,
And
Joy.

IMG_4434.JPG

It was six years yesterday.
A time to think about all that has happened in all our lives in that time.

This time of year is very, very difficult.
It begins with my mum’s birthday on Feb 13 and ends with our wedding anniversary on Mar 13.

In between is Valentine’s Day (our last weekend together) and the anniversary of the stroke.

Six years ago I was full of optimism and absolutely sure that John would come home, no matter what. I thought that that all mountains were surmountable.
I thought I could anticipate any obstacle.

Since then the unanticipated obstacles have appeared.

I’m proud of the way my little family has climbed over them but I worry about our ability to continue to climb over and keep going.

Life is becoming more and more frenetic. The old life appears from this distance to be so serene, yet I know that it wasn’t.

I don’t visit as often as I once did, and this is a source of anxiety and guilt.

We have a wonderful friend in Sandra, who visits so often and makes John’s life as good as it can be. We are both so lucky to have her. She has picked up where I leave off.

Beauty keeps me going, and I hope it keeps our children going too.

The beauty of an evening sky, the rain today, my little puppy Piño and our old dog Max. I try to pass the joy of this beauty on to our darling children.

And beauty reminds me of love.

The love John has for us,
The love we have for him.
The love of all of our friends.

Love and Beauty.

Unending Love

I heard this poem today, Valentine’s Day. Sort of sums it all up for me.

If you wish to see Gregory Peck read it, dedicated to Audrey Hepburn, here’s the link:

Unending Love

I seem to have loved you in numberless forms, numberless times…
In life after life, in age after age, forever.
My spellbound heart has made and remade the necklace of songs,
That you take as a gift, wear round your neck in your many forms,
In life after life, in age after age, forever.

Whenever I hear old chronicles of love, it’s age-old pain,
It’s ancient tale of being apart or together.
As I stare on and on into the past, in the end you emerge,
Clad in the light of a pole-star piercing the darkness of time:
You become an image of what is remembered forever.

You and I have floated here on the stream that brings from the fount.
At the heart of time, love of one for another.
We have played along side millions of lovers, shared in the same
Shy sweetness of meeting, the same distressful tears of farewell-
Old love but in shapes that renew and renew forever.

Today it is heaped at your feet, it has found its end in you
The love of all man’s days both past and forever:
Universal joy, universal sorrow, universal life.
The memories of all loves merging with this one love of ours –
And the songs of every poet past and forever.
Rabindranath Tagore

The Hard Words

I am
Always scared
Of
Saying the hard words.

You may not
Love me
Any more?

The words
Cannot
Go
Unspoken

Or we may
Never speak again.

Photograph

I came across a photograph
While fossicking through a drawer.

It’s just a licence photo,
One of those ones
We all love to hate.

You look like a tough guy,
But I know you’re not.

You never were.

I realise
That the memories are slipping,
Sliding,
Disappearing with the ocean’s breeze.

And I need
These little discoveries

To remember you

As you were.

20131025-211957.jpg

Friendship

Today it is John’s birthday, though he didn’t realise it as he doesn’t know what day it is. I organised a birthday lunch yesterday to which some of his friends came. It was a lovely afternoon.

However time is marching by and many of the friends who were once close to him, and whom he’d never have deserted, are falling by the wayside.

This is a note I wrote to one today. He was one of John’s closest friends. I feel that all those close friends who have not been there should read it. I stress that I understand about commitments and this is not intended to those beautiful people who have been quietly wonderful.

“Hi X,
Thank you for your message. I can only guess that someone alerted you to my post as it was put up last Friday, taken down very quickly (to avoid embarrassment) and yet I’m only hearing from you today.
The last five and a half years have been an ordeal for John and I feel very sad and angry on his behalf that his friends, particularly those once close to him, have been absent.
It is embarrassing to have to beg for visits.
From here on in it is up to you. His birthday is Sept 9, put it in your phone if you wish.
I know if this had happened to any one of you he’d have you living in our house, or at the very least be visiting regularly. That’s the kind of friend he is.
I realise time marches on but the man who supported and loved you all deserves more than this.
That’s really all I can say.
In answer to your question, he’s still at the nursing home where he has been for almost five years.
If you visit, please leave a message on the white board.
Yours,
Juju.”

John’s stroke and its aftermath caused (and still causes) immense sadness to our little family. However once the initial shock was over, the sadness was to be expected.
The abandonment by some friends has caused an unexpected sadness. In many ways this is much harder to take.
It is countered however, by the (also unexpected) love, kindness and loyalty shown by some who were barely known by us at the time of his stroke, and others whom I’ve met since.
I thank you all from the bottom of my heart.

The Favour Asked

When you ask:
“How is John?”
How about
You go and visit, brighten his day.

When you ask for help,
How about
You remember how you didn’t help me.

You know I’ll help
Despite
All the water
That has gone under the bridge.

I’ll re-arrange
The life
I’m trying 
So hard to re-build.

I try every day
To forget
How you didn’t help my children
Who so badly needed their family.

I’ll use my meagre resources
To ensure that you do not feel
The sense of abandonment
That I felt.

All I ask is
That you remember the good turn
And pay it forward.

And visit John.
He needs it.

Know

I hope 
That you know
How much you are loved.

The sun will lose his warmth
The moon, her glow
The stars, their sparkle

If you do not know
My love

%d bloggers like this: