Tuesday, 22 April 2014

Last Mother's Day

My Mother inspired this blog.

When I was forced to retire from the ambulance service in 2012 due to a back injury, it was Mum who directed my continued concerns about the direction of pre-hospital healthcare toward writing about it.

Together, we created the Broken Paramedic and she became my editor, my confidante and my co-conspirator. Her positive outlook, her passion for seeing others properly cared for, her attention to detail and her drive to push for what is right was at the core of everything we were trying to achieve. Her approval and guidance empowered me to continue fulfilling my desire to contribute to a critically important cause despite my career ending.

As a North Norfolk resident, Mum's locality was one of the worst affected by the failings of the emergency ambulance service. As I wrote, she supported me, advised me and championed the cause. She pushed the issue in the direction of her MP Norman Lamb, now Minister of State for Care and Support. He challenged the status quo. People listened and wheels turned.

Over the following two years, positive changes did indeed occur. There was a change of leadership at the East of England Ambulance Service and many of the issues we clamoured about on this blog began to be addressed. Because of this blog and Mum's support, I had the opportunity to write for a national newspaper, and to appear on television and radio to push the issues that were important to us.

Things in the ambulance service and the wider healthcare environment are still far from optimal, but I like to think that in some way, Mum helped to change her corner the world for the better.

I dearly hope so, because yesterday she died.

In a cruel twist of fate, the life of a bright, vivacious and health-conscious woman of 63 years was prematurely ended by a rare disease which no amount of healthcare could prevent.

In January, Mum started to become confused and weary – symptoms everyone initially accredited to the emotional and physical impact of her steadfast support of my 9-year-old nephew's ongoing leukaemia treatment, which involves regular visits to distant hospitals for chemotherapy. But by February, her symptoms began to affect her physically as her motor function became impaired and she began to suffer hallucinations.

As she deteriorated, and under-resourced and unprepared NHS services struggled to reach a diagnosis, I began to spend more and more time at Mum's home, trying to help her and my Step-Father manage her worsening condition and get to the bottom of the problem. By March, I had practically moved from my home in Hertfordshire to become a full-time carer. My two sisters, who both live near to Mum but were already stretched thin by their own life challenges, dug deep and did their best to help too.

It wasn't until the week preceding Mother's Day in late March when Mum was admitted to the neurology ward at Norfolk & Norwich University Hospital that a diagnosis was finally reached. She had a rare disease affecting the prion proteins of the brain causing rapidly progressive dementia: sporadic Creutzfeldt-Jakob disease (note: NOT the variant CJD made famous in the 90s due to infected meat).

There was no treatment, no cure. It was 100% fatal and the speed of her decline meant that she had mere months.

Determined to free Mum from an awful ward environment, we took her home from hospital in time for her last Mother's Day. We had to fulfil a promise that we had never thought we would need to keep, not so soon; we would not leave her to the care of strangers in some far-flung ward, care home or hospice.

What followed was a harrowing month in which my family and I fought an unwinnable fight to keep Mum comfortable and healthy as the torturous disease took its course. The NHS community support was fantastic, with equipment, medication, GP and nursing support readily available. With their help and along with my sisters, who between them have years of medical and care experience, and a family friend with a lifetime of nursing experience, we could not have provided a better environment for Mum to live out her final days. We did our best to make her feel safe and loved despite her horrendous condition and increasingly debilitating health.

The entire experience is not one I can readily talk about in depth yet, but it did force me to see the successes and failings of our healthcare systems from a perspective I never thought, nor wished, I would have. For me, it brought into focus things that should be questioned and challenged.

But not today. Today I mourn.

Writing this post is my first step toward trying to remember who my Mother was before the sporadic CJD stole her personality, her health and her life.

My Mother, a former nurse turned master dressmaker, was an amazing woman who deserved a longer life and a better end. Not only was she an inspirational parent, but also a wonderful friend, my moral compass and a shining example of all that is best about human nature.

The world is a darker place without her.

8 comments:

  1. You made me cry :(
    I am so sorry for your loss, and I know that is such a generic thing to say, and hear, from a stranger on the internet, but it is true.
    Your Mother sounds like an amazing woman, and you are equally amazing to have stood by her side til the end.
    My heart and prayers go out to you and your family.

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  2. Words cannot convey my sympathy, Mat. I'm so sorry for your loss. My thoughts are with you and your family in this difficult time.

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  3. Heartfelt prayers and thoughts for you and your family. What a wonderful and inspiring lady she must have been for a son to honor his mother as you have with your words. My own eyes have teared up from reading your tribute and bring back similar feelings within me. In 2007, the day after mothers day, I gave the only present that I could to my own mother. It was the most difficult decision and gift I have ever made and gave. I had her taken off of life support which she had been on for several months. I have no regrets, it was the right decision and one that I knew from her medical will that she wanted. My tears today after reading your blog are of the fond memories I will always cherish of my mother, as like yours, she supported and loved me in all things.

    The world is not darker as long as you shine the light that she shared and gave to you.

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  4. After grief comes peace. So sorry for your loss. She sounds like she she was a wonderful Mum to you.

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  5. Mate, so so sorry to hear about your Mum. Much respect to you for the difficult decisions and choices you had to make! Thoughts and prayers with you and the rest of the family. Keep up the blogging!!!!

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  6. My condolences to you, your sisters, friends and family. With what you've shared of your mom's enthusiasm and energy, she must have been a force to be reckoned with. I'm much saddened by your loss and grief, but am comforted learning that you and your family were able to provide the best care, with much love in her last days. May you find peace soon...

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  7. Well, I have to say, your post really stunned me.

    So sorry to hear this sad news. Please also accept my heartfelt condolences for you, and your family, at this very difficult time.

    Frank.

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  8. My condolences to you...CJD is undescribable and always seems to take the best. My Mother passed March 18th after a whirlwind 3 months. I hope your blog spreads to make more people aware of this horrible disease. Your Mother inspired you to start writing, may she continue to do so!

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