She Was, And Still Is, My Mother

10 Jan 2014

There are no words to describe watching someone you love deteriorate before your eyes and no one feeling that is felt. I suppose one goes through the standard phases of grief – denial, guilt, anger, bargaining, depression then acceptance. I was 16 years old when my mother was diagnosed with MND, and 16 years old when she passed away. It is only now, at the age of 25 that I think I have finally reached acceptance. Even so, every now and then I still fall back in to self pity and think “why me?” or more importantly, “why her?”. My mother was strong, healthy – hadn’t had a sick day in years. She was energetic, enthusiastic, optimistic, kind, loving – I would exhaust the thesaurus if I were to describe all the wonderful things she was. Most importantly, she was, and still is, my mother.

How is a 16 year old supposed to deal with a terminally ill parent? I used to have long conversations with my friend who tragically lost his father in a boating accident, wondering which was best; a sudden and pain free passing, without the opportunity to say things that need to be said or a terribly slow and painful passing? At least that way you can prepare yourself. We never definitively answered that question.

Motor Neurone Disease would have to have been my mother’s worst nightmare – a quick, sharp mind trapped inside a body that had betrayed her. For me, the only way I could deal with it was to continue with life, pretending that nothing was happening and I was a normal kid. Not that people didn’t know – everyone knew and was very supportive – but I couldn’t stand being the one everyone pitied. So I pressed on during the day and came home in the afternoon, going about my business trying to pretend that all was well, until the bell would ring and I would have to take her to the bathroom or lift her in her chair to stop the pressure sores. Even as I write now, I am astounded by how I talk about my own pain. What about her pain? To put myself in her shoes is unbearable – something I still cannot do. She fought with courage and dignity, trying to spare me as much of my pain as possible, but, in those moments, I was so full of self-pity and anger I found myself blaming her for getting pressure sores, or needing to go to the bathroom. I am not proud of it, but it was how I felt – something I have faced the heavens and apologised for many times. When the end was near and we all knew it, she was so miserable and so weak that I would fall asleep at night, secretly hoping that she would peacefully pass in her sleep; waking in the morning to be quietly saddened she would have to endure another day. That I don’t apologise for. MND is one of those diseases that makes you realise there are worse things than death. The minute she let go – fairly peacefully – I am sure was one of the most serene moments for her. The pain we felt at losing her was nothing compared to the pain we felt watching her anguish every day.

I can’t help but thinking of my father. A self-confessed workaholic who worked insane hours to make sure we could go to good schools and have all the opportunities in the world. His life stopped the day she was diagnosed. Work took a back seat; he became a full time carer. How he coped, I still don’t know. He never allowed himself to show his pain in front of me and my sister, he always held us all together, managing while I tried to block it all out. How he coped, knowing the person he had planned to settle down and spend many happy years with – no work, kids school paid for, grandchildren… I admire his strength and I know mum appreciated him more for it.

When something like MND happens in your life, you carry on. You have no choice. It becomes your life. What upsets me now aren’t the holidays – birthdays and Christmases – but the fact that, at 16, you see your parents as obstacles to staying out late and trying to sneak in to pubs. I see the relationships my friends have – especially my girlfriends with their mothers – and I get this knot in my stomach that I missed the opportunity to become really good friends with my mother. We never fought much but we weren’t at that point where we were mates – we were mother and daughter. For that relationship I have lost, I still grieve. I grieve that my mother won’t be at my wedding; that she won’t be at the birth of my first child – her grandchild. I grieve that my children will not get the chance to know their grandmother.

For years, every time I thought of my mother, all I could see was this twisted, mangled body. It was haunting and more upsetting than I could put in to words that I could not remember the happy times – childhood, Christmases, her laughing with her best friend in the evening as they roasted a leg of lamb. One day, out of nowhere, about seven years after she passed away, I had a happy memory. All I could see in my mind was her smiling face and ever since then, I have trouble recalling what she looked like when she was sick. Selective memory? Perhaps. Or perhaps I am finally at peace. I am eternally grateful that now all I have are happy memories. Now, I am finally in a position where I can deal with my own grief and can help others who are going through what I have been through.

I still think about her every day. I don’t often go to visit her grave; I like to think she can hear me wherever I am. I still tell her I love her and I still ask her for guidance. There are so many things I regret, but as I get older I realise there is no point regretting the past and I know she would not want me to, she would want me to look forward to the future – even though the thought of the future without her often brings me to tears. A family friend said something to me about three days after mum passed, she said; “When someone you love dies, you never get over it, you just get used to it”. This has stuck with me ever since and it is true. And why would you want to get over it?

The experience of Motor Neurone Disease is something you can not put in to words. Even as someone who has gone through it, I find it difficult. It is heartbreaking. This foundation is my mother’s legacy. We promised her we would fight to find a cure and that is what we are doing. If my efforts mean one family gets spared the heartache I have experienced, then my job is done.

Claire Cox

Claire is the daughter of the dearly departed (but always with us) Deb Bailey.

HELP US, HELP THEM

GOT A STORY? SHARE IT!

Join Our Team

The Deb Bailey Foundation for Motor Neurone Disease is a not-for-profit organistation and depends on the generosity of individuals, corporations and community groups to help us achieve our mission of finding a cure for MND. Whether your interested in fundraising, sponsorship, joining the research team, or if you’re just keen to get involved, there are many ways you can help.

Donate Now

You can support the research and work we are doing by donating to The Deb Bailey Foundation for Motor Neurone Inc. Whether it’s a one off donation, pledge or sponsorship you can be assured that your money is going towards research aimed at finding a cure for MND.

Contact Our Administrators

Are you looking to get involved through research, by providing information or by sharing stories about your involvement with MND? If you would like to get in touch with us, The Deb Bailey Centre for Motor Neurone Disease, or our researchers please contact us.

Generously supported by
Share Us