Peaceful
Breeze
Mark Carrington
In Memory of Marian Rose Carrington (1935-2015)
By her son Mark
Sometimes life goes the way you want
And sometimes it doesn’t
And when it doesn’t, if you look,
you will find something beautiful
Anonymous Quote
Contents
Title Page
Dedication
Epigraph
About the author
Introduction
Who this book is for
Why I wrote this book
Key lessons
About mum
1. The Journey Begins
2. The diagnosis
3. Gathering my thoughts and feelings
4. First operation
5. Homecoming
6. Main operation
7. Our life routine
Discharge from hospital
Home, sweet home
Daily living
Fighting spirit
8. Looking forward to Christmas 2014
Christmas shopping
Christmas Dinner
9. Entering the final journey, 2015
Being told
Final direction
Two weeks of pain management
10. Mum’s final days
Turning point of mum’s illness
Admitted to hospital
Hospice care
Mum’s final decision
11. Saying goodbye
Final weekend
Saying goodbye
Last day
Next days
Funeral service
12. Grief is the price we pay for love
Final chapter
Copyright
About the author
I have always been a goal-oriented person. Achieving just about anything I really set my mind to. This includes securing three master’s degrees over my life.
Then in early 2014, my entire world turned upside down. My mother was diagnosed with advanced colon cancer. She passed away in June 2015.
Through the daily challenges of caring and nursing for Mum, I discovered a wellspring of inner strength that I never knew I possessed. As a result of my personal brokenness, paradoxically, today I am a much stronger person. The quote from the famous German philosopher Friedrich Nietzsche is so true. He said “That which does not kill us, makes us stronger.” Not only have I discovered who I am. I now have a clearer sense of my purpose in this world.
Throughout her illness, I witnessed something truly wonderful, Mum’s humanity. Caring for Mum has profoundly changed my life. I now know what it means to be human. I am even more determined to love and cherish my family and friends. Above all, I am going to try to live the best life I can. I am now planning to study towards a Doctorate of Philosophy (PhD) in Palliative Care. I have this insatiable desire within me, as long as I live, I will learn.
In my wildest imagination I could have never envisaged writing a book on this topic. In some small way, I hope my story will help other carers who are looking after a loved one with a terminal illness.
All the events and conversations contained in the book are true.
Introduction
Witnessing Mum’s sheer vulnerability and the purity of her love as she succumbed to her cancer was a truly humbling and profound experience.
Everyone diagnosed with a terminal illness has a different story, a different experience, and a different way of approaching the end of their life.
For family members caring for those loved ones, it can be an equally traumatic time. They too have their story to tell.
This book chronicles my story, both as a son and as Mum’s carer. In particular, as strange as it may sound, it gave me the opportunity to understand myself better and more importantly, grow as an individual.
In 2014, Mum was diagnosed with advanced colorectal cancer, also known as colon, bowel, or rectal cancer.
This book records our journey and experiences as we navigated through the healthcare sector. In particular, how doctors, nurses, and healthcare professionals treated Mum at every stage throughout her illness.
Overall, Mum was treated well as a cancer patient. As she neared the end of her life, however, the coordination, delivery and quality of the palliative care, was on occasions, sub-standard. Often, the lack of compassion and tenderness she received was woeful.
The harsh reality is that if you are frail, elderly, vulnerable, and seriously ill, you simply do not have the strength to complain or stand up against how you are being treated by the healthcare professionals. If it had not been for me standing beside her as her advocate throughout her illness, Mum would have suffered in silence, like many thousands of elderly people.
As Mum was a gentle woman, she did not want any fuss to be made over her. She did not wish to place a burden on anyone dealing with her illness, whether it be the doctors, nurses, or the care team looking after her. She repeatedly apologised to them for actually being ill. As you read through this book, you will see the emotional rollercoaster ride I went through and the tensions I had to face while constantly fighting on Mum’s behalf to ensure she was given the best medical treatment and care possible.
In my opinion, at any point during Mum’s diagnosis, she could have so easily fallen through the gaps in the healthcare system. She could have so easily died a premature, terrible, and tragic death. As it happened, she passed away with dignity in a hospice.
I hope this book serves as more than just a grief memoir, and instead encourages a wider debate about our society’s view of caring for our loved ones when they are reaching the end of their life.
The need for both social and end-of-life care is going to rise exponentially. The biggest challenge for our society is how we look after the elderly in the context of fiscal and budgetary restraints within the National Health Service (NHS) against the backdrop of finite resources.
The facts are shocking. For example, you might be startled to know that:
The population over 75 is projected to double in the next 30 years.
There are over a million carers over 65, an increase of a quarter in the last ten years.
Two-thirds of hospital patients are now over 65.
While we have a strong hospice movement, just over five percent of us will pass away in a hospice with world-class care. The reality is that the majority of us will pass away in a hospital.
The core principles of the NHS are focused on early detection, treatment, and survivorship of our illnesses. I strongly believe that palliative and end-of-life care must be included as a further core principle. Without it, many of us will continue to die without dignity.
With the advances in medicine and the longevity of life, the ethical choices of end-of-life care are not so simple.
The right to die discussion is not what this book is about. There are plenty of books that cover this subject area. The law in the UK as it stands is clear: assisting someone to die is illegal. The rights of the person to determine and exercise how and when they wish to die, and the counter-argument that such a decision essentially undermines religious, philosophical, and ethical principles, will continue to be debated by society for decades to come.
Who this book is for
I believe there is something very precious and life-transforming about caring for a loved one.
So, before I outline who this book is for, I need to tell you “who this book isn’t for.”
When you care for a loved one, you do things not out of a sense of duty, but out of pure selfless love.
If you are caring for someone you do not love or have no empathy for, then this
book is probably not for you. You will not understand the heartache and, at times, the sheer indescribable joy of caring for a loved one.
No one who hasn’t been the primary carer of someone with a chronic or terminal illness for an extended period can begin to imagine what it is like. You can read book after book about caring for a loved one. But it is only when it happens to you that you truly understand the impact it has on your life.
For me, caring for Mum was like second nature, as natural as breathing.
It was that unconditional love that sustained me through the difficult and unexpected journey we faced.
I trust that this book, somehow, gives you an idea of what it is like.
If you are caring for a loved one, I hope this book will provide comfort and reassurance that you are not alone. Millions of other people, including myself, have trodden this path before you.
Why I wrote this book
I have thought long and hard about writing about my experience of caring for Mum. It has been an incredibly hard decision to make. But in the end, I boiled it down to four reasons.
First, to honour my Mum, her memory, and her humanity.
Second, I hope this book will help other carers going through the same experience.
After reading this book, you will see how, as a carer, I navigated through the depths of unmanageable emotional pain as I accompanied Mum to the end of her life. I believe you cannot go through an experience of caring for a loved one with a terminal illness and remain unchanged as a person.
If even just one person going through the heartache of caring for a loved one with a terminal illness reads this book and it helps them, then that’s enough for me; I’ll have done my job.
And thirdly, through deep emotional writing I have been able to gain perspective over my loss, and to gain power over my grief.
Finally, I believe we should protect the vulnerable and preserve their dignity not only while they are living, but also as they reach the end of their life.
In this respect, the book is dedicated to the many thousands of carers who selflessly look after their terminally ill loved ones.
Key lessons
There are four key lessons that I have learnt caring for Mum, which I hope you can take away from reading this book.
First, I just simply kept on digging deeper into my emotional reserves. And when I thought I had reached the bottom, I managed, as a carer, to somehow dig deeper. And day after day, I continually dug deeper.
Believe me when I say you are emotionally stronger and more resilient than you think. You just need to know how to tap into your hidden strengths to pull you through. For me, it was my faith and the power of prayer.
I hope you will see, as you read about my personal journey as a carer, how I managed to draw on my emotional reserves.
The second key lesson is one of forgiveness. By which I mean forgiveness not only of others, but more importantly of myself. Let me explain. There were times when I was caring for Mum, I would become angry, frustrated, and annoyed. I might have said things to her in the wrong tone or in a raised voice. I now regret that. I have regrets for things I should have done differently or not done at all when caring for her.
I wish I could take back my anger and not have raised my voice or been consumed by my emotions. But I can’t. There is no rewind button in life. The past cannot be undone. I made a lot of mistakes when caring for Mum. It has taken me over a year, to accept my own failings and weaknesses as her carer but more importantly as her son. I have found peace, in the knowledge, that as I was going through this heartrending period of my life, I followed my inner voice. In effect, my soul. I tried to do my best. I tried to do the right thing by Mum. And that is, in my opinion, all you can do in life. The third key lesson is one of letting go. No matter how much you love a person, ultimately, it is their personal journey. The hardest thing I had to do in my life was to let go of Mum. That is not to say I do not miss her every day, because I do. More than I can express in words. She is in my mind and heart every single day. I accepted, however, that it was her journey to take alone. Getting to that point of profound understanding, I first had to take a journey of self-discovery. It did not happen instantly or overnight. It is only now, looking back, that I realised, running in parallel with Mum’s journey, I too was on my own journey of self-realization.
Finally, and not least, is the use of humour. It is strange to say, but there were moments of pure joy for caring for mum. I believe in the right circumstances and in the right context, humour can ease emotional pain.
When you care for someone you love, it deepens your empathy, your compassion, and your humanity. For me, to witness the sheer frailty of my Mum, another human being, has transformed my own life in so many ways I thought were not possible.
About mum
This book is primarily about my emotional journey of caring for my mother.
I do, however, wish to give you a brief insight into the type of person Mum was. To describe her as a ‘cardboard cut out of a saint’, would not give her life justice. She was very much alive and wanted to live. The early part of her life can only be described as tough and unfair. The university of life was not kind to her. But she got through it. I have no doubt these years developed her indomitable spirit.
As an only child, I was my Mum’s pride and joy. And like most mothers, even when I was a grown adult, she still saw me as her little son. Whenever life got tough for me, she was the one who kept me going and encouraged me not to give in.
Mum was loving, caring, and thought of others first. She was warm and open-hearted. She not only stood up for fairness and justice, but she would fight for the poor and the underprivileged in our society. She knew first-hand how tough life could be because when she was young, trying to put food on the table was a daily struggle. But she never let the poverty affect me.
She was also a woman with integrity, compassion, honour, respect, kindness, and love.
Mum enjoyed watching sports on television. In particular, horse racing and football. She was an avid and knowledgeable supporter of Arsenal Football Club. She could name all the great players: Thierry Henry, Dennis Bergkamp, Ian Wright, and Robin van Persie, to mention just a few.
Mum wasn’t the type of person who could share her emotions and feelings easily.
She was a neat and organised person—everything had to have a place and a purpose. At times, this used to drive me crazy. But that was the way she was.
Mum was four years old when the Second World War began and ten when it ended.
As a child, she grew up in a world where bombs were being dropped only a few houses away from her. She loved to tell me her memories of when the family used to live on Homer Street in Paddington, London. She told me how, as a child, she crawled under the table when the bombs were being dropped. All the houses in the street had lost their roofs and windows. “We were very lucky,” she commented as she reminisced.
She would also reminisce about how she was evacuated to Wolverhampton for a short period during the war with her niece Shirley, and how the couple that looked after them in Wolverhampton wanted to keep her. But my grandmother (Mum’s mum) would never entertain such a thought. She always said my grandmother was a “golden mum.”
Perhaps her childhood contained her fondest memories as she was surrounded with so much love. Whilst times were tough in those days, there was a shared community (where people looked out for each other), a shared purpose and spirit. She often told me about how she rode her first bike and how she cried watching the Disney film Bambi. She would often say to me that, whilst money was short and food was rationed, they were nevertheless, lovely years to live through. Listening to her memories were truly beautiful moments for me.
Mum continued throughout her life to have a war-like spirit of just getting on with life, no matter what she faced. That spirit has been instilled in me.
Mum was not particularly religious, but she retained a faith and spiritual belief that she kept to herself.
As I was growing up, Mum gave me three pieces of advice.
The first was always to be grateful. She used to say, “There but for the grace of God go I.”
Second, “Do unto others as you want them to do unto you.” In other words, treat people as you wish to be treated.
And finally, she told me always to find a sanctuary inside myself, inside my heart, that no one is allowed to invade. “That space is yours alone, where you find your inner peace and contentment,” she used to tell me. “Only you and you alone can make yourself happy.”
Above all, as you read through this book, you will see that she was resilient to the very end.
She always maintained, as she got older, that the fear of death had faded into an acquiescence and recognition. She just hoped she would die peacefully. As a consequence, she not only accepted her terminal illness, but faced it head on with courage and fortitude. At no stage during her illness did she say she wanted to give in or give up. She had a fighting spirit and an insatiable will to live.
To me, she was, and will always remain, a simply remarkable woman who lived a worthy, simple, and contented life with gracefulness and purpose.
Surely, that is all we can hope for in our own lives.
1
The Journey Begins
Even though my lifestyle has been insulated and my life largely untested, I thought I had a sense of mastery and choice over my life. As a goal-oriented person, I had all my hopes and plans laid out in front of me and, one by one, I was achieving them. Whilst never being complacent, I lived in my own little world. I thought I was in control of my life and destiny.
Everything changed forever on a cold rainy day. It was Friday, 14th March 2014. As usual, I left home for work at 7:30 am. Mum went out to do her daily shopping. She always liked to buy fresh vegetables and fruit. She would walk at least two miles a day—a mile to the shops and a mile back. That was pretty good for a 79-year old woman.
Peaceful Breeze Page 1
