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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 mummy died this morning. She was the most humble and devoted mother. A devout Muslim from India who spent the last 55 years of her life bringing up her four children and ten grandchildren in London. Those who knew her or of her will know she was an amazing woman who suffered much hardship over the years. Despite this, she seldom complained about anything and saw it as her mission to look after others and put their needs before hers.
She came to England from India by ship, newly wed to my father whom she met for the first time on her wedding night. I only found this out recently but she was pregnant at the time and must have suffered terribly with sea-sickness. She also had the responsibility of looking after her mother-in-law, who was travelling with her and was suffering from dementia.
Mum didn't speak a word of English or know a soul at that time. She had lost her mum at the age of two and left her father and siblings to start a new life here in the UK. I cannot imagine what it must have been like setting foot in a foreign land and the loneliness she must have felt in those first months.
My memory as a child is of her filling the house with her chatter and laughter. She worshipped my father and supported him as he went from a small market stall to a successful cash and carry business.
Mum's job was to shop and cook for the staff of 6-12 people; yes, fresh meals every day, twice a day. She was well known for her samosas with hand-made pastry. Nobody could make samosas like my mum. She used to seek out shops selling the best and cheapest fresh produce and took great joy and pride in feeding the family and any last minute guests, of which there were always many! She never let us kids lift a finger to help her in the house either.
Sadly my father passed away before they could enjoy retirement and mum became the carer for my older brother, who suffered chronic depression. She lived independently until she was diagnosed with motor neurone disease (MND) in 2014. MND is the most devastating condition - she lost use of her legs, her speech, more recently she struggled to swallow and I had to battle with my family who couldn’t understand why she didn’t want to end her days in hospital with a feeding tube. Mum suffered terribly as a result of her condition, but despite this she had a smile for everyone, including strangers. She was a magnet for children: she could light up their faces with a click of her fingers. And a jar of sweets was never far from her!
The last few months she rediscovered her love of classic Indian songs and would dance in her wheelchair. She took up sewing during her illness, making dozens of tapestries which adorned the walls of her room. She learned to play bingo for the first time and was the bingo champion at Springfield! She came to be loved by her carers and fellow residents in the nursing home; it gave her a new lease of life in the last 14 months of her life. It was during this time I really came to know mum and watched with joy as she made so many new friends without being able to speak. Her warmth and energy spread to those around her. She was open to new experiences even in the advanced stages of her illness, connecting with everyone who came into contact with her. This February we decided to give her a surprise second birthday party. She was not used to being the centre of attention but you can see from the photograph how delighted she was.
Having quietly endured endless pain all week, she left us today in peace and, most importantly, with dignity. She taught us all that it is not only life that matters but the way we leave that also matters. I am glad we were able to fulfill her wish not to die in a hospital. The day before she died had watched her great granddaughter make a straw doll using a kit. She saw me hopelessly trying to knit. Various family members arrived armed with treats that mum was craving, like rose syrup and yoghurt curry.
I’m so grateful to my niece and my sister for colluding with me to make mum's last months some of the jolliest in her life. I'll always cherish this time. My grandfather named mum Cher Banu, which means ‘Dear Banu', although to her family and friends she was known as ‘Amma’ (Mother). That was because she was a mother to us all.
I am so grateful for having had this time seeing my mum’s spirit remain strong despite her devastating diagnosis. She was an inspiration to us all and will remain in our hearts forever.
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