Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
My mum Helena had rheumatoid arthritis for 16 years, and a heart condition diagnosed in September 2012. Throughout 2013, mum lost her mobility; by January 2014 she could no longer walk or even transfer herself from her chair.
After seven months of waiting, she was diagnosed with Motor Neuron Disease, exactly two weeks after her 66th birthday. It was such a shock.
My mum was the best. She brought my sister and I up on her own, and she was a fab nana and mother-in-law to my husband and our children.
Mum also cared very deeply about the world: she hated any type of cruelty or injustice. In the weeks after her diagnosis, mum's voice was losing its power and her appetite deteriorated. She had terrible constipation, felt sick most of the time and lost at least three stones in weight. I tried desperately to make her something she could eat.
When we got the diagnosis, we applied for a house for mum beside us (we lived about 15 miles apart) so that we could help care for her even more, with less time lost to traveling. Mum didn't want to be in a care home, she wanted her own place and space. In the meantime she was still living one flight up in a maisonette, completely housebound. It broke my heart locking the door after each visit, I felt like a prison warder.
Her first ever wheelchair arrived in May 2014, four months after her diagnosis. I'd hoped it would give her some independence, but it was not to be. Mum passed away in her sleep shortly afterwards.
We are devastated. I don't know how I am going to manage the rest of my life without her.
From the early 1970s, mum wrote poetry. One of her poems was read out at her funeral. I too have written a poem to try to express our loss.
Miss You, Mum
As I sat with my Mum waiting for the consultant to talk
At last an explanation of why Mum could no longer walk
Please make it something we can fight with ease
I was devastated as I heard the words "It's motor neuron disease"
The look on Mum's face was plain to see
No thought for herself, only concern for me
And how I had taken this horrendous news
Cos try as you might you would always lose
For there are no winners with a disease like this
And nothing can prepare you for "that" diagnosis
Fourteen short weeks were all we had left
I'm still in shock and totally bereft
Robbed of the best Mum and Nana on earth
No measure could tally what to us she was worth
Small comfort Mum passed away at peace in her sleep
I pray that God her soul will keep.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66