4th May: Helen’s Story

My mother loved her work. As an Occupational Therapist she spent her professional career helping others to live full and independent lives. It was more than a job to her, she felt a large sense of personal duty to those she helped.

I have many a childhood memory of cammodes in the car boot and large binders full of heavy casework. After spending her days on visits and supporting her colleagues, the kitchen table was the evening refuge where she could catch up on the paperwork with a glass of wine and a slab of cheese.

By the time I left home for university Mum was among the most experienced members of her team, many of whom were friends of the family, and who had seen me grow up over the last twelve years. As unusual as it seems now, it wasn’t uncommon for my brother or I to find a quiet corner of the office to sit and wait for her at the end of the day.

Her office was only a small detour on the two mile walk home from school, and after someone broke in while I was home alone after school, everyone felt a bit safer with this arrangement. But even as a kid I also knew this might stop her working late too.

So time moves on I fly the nest for university and the independence of adulthood… It’s a few years after I graduate and we lose her Mum and my last grandparent. Only a few months later Dad is diagnosed with cancer. Mum holds the family together over the next couple of years while Dad has life saving surgery but catches MRSA afterwards, he pulls through, but we’ve all been through the ringer a bit.

Dad isn’t working, but Mum continues to work full-time and it doing extra work to support the MND (Motor Neurone Disease) Association, which is a cause that has come to mean a lot to her through her work.

On my visits home I still see loads of paperwork but the nature of it changes over the years as Mum has taken on a more supervisory role in the team. I wonder if Mum will retire as she is approaching 60 and take a well deserved break with Dad. I should know better, because there are still people she can help and support.

Three years later we learn that Mum has pancreatic cancer and our world falls apart. Mum is the glue that holds the family together and it’s only a few years after Dad has recovered. This bombshell leaves us in pieces as we all try desperately to cope with it in our own way. My Mum is an astonishingly private person, even with her own family, she is both our battleaxe and our heart and soul, the one we all go to for emotional support, so now we are all left terrified and none of us know how to cope because the one person who gives us our strength is seriously ill, she needs our support.

When they operate and find that its spread to her lymph glands and is therefore terminal, life feels numb. The surgeon delivers the news over phone as we huddle around to overhear the news on Dad’s mobile in the hospital car park.

Six months is the timeframe they give for terminal pancreatic cancer.

We all focus to make the most of that short precious time. For me this is about making memories with Mum that I can treasure. Dad agrees to the conservatory Mum has wanted for years. Mum spends this time with the same vehement independence she has sought for others, even as the weight drops away, she still carries on like nothing is wrong, raising money for Macmillan and the MND Association, she now makes time to paint again. We go to gardening shows and West End musicals. Dad takes her on holiday in the sunshine. We are blessed with 18 months of bright and cheerful memories, before Mum falls over and breaks her arm, her body fragile from her illness and treatment. The subsequent two weeks confined to a hospital bed are enough for her and she announces she is ready to go now. It’s just two weeks later and she’s home with us all while we wait for her laboured breathing to stop.

I don’t know when my Dad told me that Mum had been forced to retire. If it was while she was still with us or afterwards.

When you have such an urgent sense of impending mortality that every second seems precious, you don’t want to waste any of it fighting an employer. Employment disputes are often slow moving behemoths, tied up in bureaucracy, while life feels mayfly short. Every single bit of your energy goes into trying to cope and making the most of that short time.

I know my Mum wanted to keep working, her work was so important to her. But if she had continued working her employer would have had to pay death in service.

My Mum, possibly embarrassed at the treatment she’d received from her employer after 23 years of dedication, didn’t speak about it. But my Dad told me that they bullied her into retirement.

I can only imagine she retired to avoid being pushed out and to protect her pension for my Dad, who was self employed by this point. Her capability to work could not have justly been called into doubt, but fighting maltreatment at work takes time and energy, both of which are in very short supply when facing terminal illness.

It was only when I saw the TUC campaign that I realised this happens to more people than I’d imagined. My Mum wasn’t alone in being treated badly at such a vulnerable time. We need to provide the legal protection and support so that anyone who faces the horrible news of terminal illness can do so without fear of being unable to support their family and loved ones. The independence to choose to work while well enough to do so and the ability and support to hold companies to account for unfair dismissal in cases of terminal illness.

Helen

Posted in Latest Campaign News

Latest Campaign News