Sonia tells her mother's story:
This story highlights the importance of making an Advance Decision.
My Mother, at the age of 70, began to show signs of Motor Neuron disease. She deteriorated and within five years she was totally incapable of doing anything for herself.
The most difficult aspect was the experience of watching her choke because her throat muscles were failing to work. Rather than eat solids she chose to suck boiled sweets but still choked on her saliva.
Her weight dropped to 5 and a half stone. She was in agony during the night - unable to turn over if help was not available. She was not able to call for help - her voice disappeared until she could only communicate with a whisper or the blink of an eye.
I and my brother administered to her for 24 hours a day. Social services were totally inadequate. My Father couldn't cope with watching her suffer - and avoided all contact with her - choosing to remain in an upstairs room for the full year before she died. She never once complained about any of the symptoms - and they were numerous.
She was denied the dignity of performing her own ablutions and suffered immense pain when her bowels became impacted. Fluid oozed from pores in her legs and her back muscles collapsed so she couldn't breathe while sat up.
A week before she died - my Mother was admitted to a hospice - basically because myself and brother had reached breaking point in caring for her and trying to run our own homes and share time with our families.
She insisted that she didn't want resuscitating if her condition worsened - though she didn't ask to end her life. Although I suspect she spoke along those lines to the Samaritans. She would not have shared this burden with my brother and me. She was too strong and proud - and independent for as long as was possible.
Eventually she developed a clot on her lung - and breathing became a nightmare of pain. My belief is - that she was 'eased out of her misery' by extremely compassionate and caring hospice medical staff. For that I am eternally grateful. And so was my Mother.
One of my mother's aunts we suspect had died many years previously with the same disease. And there is an understanding that there is an element of hereditary attached to it. If I contracted the disease - I would certainly wish for the choice to be my own - whether to continue with this life - or end it. And I advocate that the law be changed to accommodate that wish - and for the option to take place in the UK rather than a country foreign and inhospitable to me.
Should you want to contact any of the people featured in these pages, or wish to share your own story with us, please contact Jo Cartwright:
020 7479 7737 or 07725 433 025