Past Caring by Audrey Jenkinson

Actress Audrey Jenkinson was starring in a BBC television series when she put her career on hold and returned home to Edinburgh to care for her mother suffering from a stroke and her father with cancer. In Past Caring, she describes how she tried to cope with her parents deaths and recalls the void she felt at the time: "I wondered how others coped in similar situations. When I discovered there were no books on the subject. I decided to write one." Audrey travelled throughout the UK. interviewing former carers and asking them how they rebuilt their lives. The stories I heard were both fascinating and uplifting, and I knew other people would find them interesting and helpful. Past Caring also includes a twelve-step recovery guide for past carers.

Concern for the carer is as important as concern for the patient. Past Caring tells why"
Dame Judi Dench

"With Jenkinson's positive approach to picking up the pieces post-caring, she is surely on the road to becoming
a life coach."
The Guardian

"A remarkably candid book."
Daily Mail

Contents

Introduction

Introduction

I don't know why it happened as it did. I don't know why they had to suffer as they did. I envied my friend whose dad collapsed midway through his Cuban cigar. I envied my neighbour. Her mother simply went to bed one night and never woke up. How lucky to just drop dead!

I know everyone must die. It is the how that is difficult to reconcile.

It was not so much my parents' deaths that scarred me but what they went through in their lives. If we could choose our deaths, oh joy! Choose our lives, what then? There would surely be a shortage of carers?

I had just turned twenty-four when my mother suffered a severe stroke. She had had a small one eight years previously. Fortunately, she recovered completely and I remained blissfully ignorant of the horrific damage a severe stroke could inflict. This time I was terrified. I moved back home from London, where I had been working as an actress. I was lost, out on a limb, didn't know what to do.

Whilst my friends were living the lives of twenty-somethings, excitedly buzzing with news of career, relationships and fashion, I found myself catapulted into a strange new world. The world of a family caring, as best we could, for a seriously ill loved one. It is a difficult world to put into words. I felt alone, often. How could I expect my friends to understand what was going on for me when it was so outwith their — my — ken?

Yes, we all have choices. Perhaps not about what events life deals us, but rather, what we choose to do about it. I moved back home. Twenty-four and terrified, a book was my saviour. So They Tell Me:Encounter With Stroke by Valerie Eaton Griffith, an account of the work she did, unpaid, purely as a neighbour, with the actress Patricia Neal, wife of the late Roald Dahl.

Patricia Neal had lost the power of her speech, as had my mother. Valerie's story, of her rehabilitation work with Pat, told with warmth and humour, kept me going. I now had a friend by my side, who had been there too, who understood.

Reading about other people in similar situations gave me a sense of not being quite so alone but somehow connected to the world. More importantly, it gave me a kind of hope, even in the bleakest days. Then — yet more bad news. We came to know that my father was once more suffering from cancer. He had had an operation to remove a tumour seven years previously. The cancer was back.

Witnessing what my parents endured and caring for them, along with my family, in the small ways we could, had an indelible effect on my being. I know this. How is more difficult to explain.

I saw things and heard things that haunt me still, I know. As I watched the life slowly ebb from my parents, so too did the life ebb from me. Like a pebble battered on the seashore I was eventually eroded, worn out. All this, before they died.

After they died, I know I hopped around like a little orphan lamb bleating every two minutes 'Life's so unfair.' I know I searched for reasons. Why do some souls seem to roll through life unscathed whilst others have to bear more than their fair share of tragedy? I couldn't understand it, tried to work it out.

Tony Garnet, a television producer, once said to me, "Audrey, life is unfair. Once we accept that, it's easier." That made sense. Life is unfair. Why? Because it is. Some people have an easier time than others. Why? Because they do. Life is inexplicable. Things happen. We live the experience. We discover things about ourselves. We do our best. What else can we do?

To write a book like this was never in my plans. I could never have imagined that one day I would be sitting in strangers' living- rooms and offices across the country asking people about their life as a carer, as a past carer. But this is where I was led.

Nine and a half years ago, in the wake of the deaths of my mother and father, I went to a bookshop. I was searching. There were books on childbirth and menopause and 'Magical Living'. Books on health and wealth and finding Mr Right. Books on losing and gaining weight and how to have great sex. Books on general bereavement that advised the bereaved one to 'try to resume your normal life as soon as possible'.

But what if one's 'normal' life had been that of caring for the person who had died? What if one had given up more and more of one's own life to cope with the worsening illness and demands of caring for another? There was nothing on how to face the challenge of filling the void. Where to begin? After years of caring, what do you do with freedom?

It really bothered me that there was no book on this subject. A seed was planted. As an actress I needed a creative way to try to make sense of my parents suffering. My father was a writer. I had looked for a book that didn't exist. So why didn't I write one?

The good news ... here's the book.
The bad news ... forget nine and a half weeks; it took me nine and a half years.

Although the idea of the book possessed me, I was scared. Scared I couldn't do it. Years of caring had filled my once carefree being with endless doubt, confusion. As a child, I believed anything was possible. As a young adult I still believed it. Then came the years of my parents' illness, the juggling of caring and career, the exhaustion, the panic attacks, the loss of joy, the guilt, the fear. The constant terror inside, the not knowing, what will today bring?

I woke up one morning to find my once bubbly pool of confidence had evaporated.

I no longer had any sense of self. It was as if someone had gutted my fleshy centre and left just a bony shell. I could function and look fairly normal from the outside but the inside was empty. It was hard to remember that I was once the girl from Leith who had dreamt of going to London and getting a part on television.

Self-esteem plummeted. I trailed along Harley Street desperate for plastic surgery because I believed myself so incredibly ugly. "Don't worry, we can fix you," said cheery consultants. I was ready to sign up for anything, I was willing to risk everything such was my lack of self-love. (Thankfully, I was rescued by a dear friend, though not before I had a small bump filed down on my nose. It's now worse!) I have nothing against plastic surgery, but I believe the decision to go ahead with it should be made from a solid perspective. The thought that I almost signed up to have my entire face restructured now amazes me.

This incredible loss of confidence is something I have struggled with over the years since my parents died. If they had just dropped dead one fine day, would that have affected my being in such a way? I cannot say. All I know is that the years of caring took their toll as they did.

The idea of this book stayed with me but I couldn't see the way ahead.

Then, suddenly, after years of self-destructing with grief, living in chaos and craziness, I found a way. Not alone, but with the help of others.

I sought out human beings who had cared for other human beings twenty-four hours a day for no pay, for nothing but love. People who had seen terrible things yet stood firm in the face of their own fear to offer what comfort they could to a dying loved one.

I interviewed Christians, Quakers, Hindus and heathens. I spoke to those who had lost faith and those who had found faith. I interviewed children who had cared for parents and parents who had cared for children. I talked to husbands that cared for wives, and wives husbands. I met with men and women who happily shared their stories in a bid to help other men and women like them. And with each story I heard, I came to know more the tremendous scope of the human spirit and its extraordinary ability to survive the most profound tragedies, to not only survive but transform the darkest days even, into a dazzling new dawn.

I came to know that in past caring there is no right or wrong. That what is important is to honour our pain, sit with it, live with it. Trust that it will lead us to a new place.

Words seem inadequate to capture the depth of emotion that is at the core of each individual's experience. Feelings are to be felt, lived. Only then do words come. And in words there is a chance to share experiences, to know that you are not alone.

Past Caring is a sharing of stories. They are personal stories that have been generously told to me. My hope is that they will in some way touch and inspire those who read them. This book was born from a wish to give something back. It is a thank you to Valerie Eaton Griffith who took time to document her story and make a difference in my life.

With love, Audrey.

Care Fact
There are over seven million informal carers in the UK today.

Over seven million people currently looking after an ill relative or friend at home.

Seven million.
That's more than the entire population of Scotland, almost one thousand, seven hundred and seventy-seven packed jumbo jets; enough people to fill Ibrox 117 times and if you laid seven million people end to end (average height 5'7") you would cover a distance of seven and a half thousand miles. That's like walking half-way across the world, half-way from Scotland to Australia. Phew, that's a lot of worn out soles.

Some day, over seven million souls will be past caring. Unbelievably no book has ever been written on the subject of what life is like for people past caring.

Care Fact
Most carers and past carers feel isolated and alone. If you feel isolated and alone, here's the good news ...
There are six million, nine hundred and ninety-nine thousand, nine hundred and ninety-nine human beings out there who probably feel just like you.

"Every time I drive past a hospital, I think of all the ill people inside that building. I think of how many of them will be going home today, tomorrow. And I think of all the people who love them, who become carers overnight."
Mary Parsons, a sole carer for both parents for thirty years.