As I sit here very late into the night trying to reflect on the awesome launch of the Mental Health Strategy for our District attended earlier this week – I think about the link with holistic approach to mental health; I am also trying to review the journey BME Dementia has had and where it is headed.
My thoughts take me back, thinking about a young woman who was widowed in her early 20’s. She found herself raising two young boys on her own in rural Pakistan. She worked the land and grew her crops in a patriarchal society, which had the bizarre duality of patriarchy but requiring a widow to take on the role of a man once she had to fend for herself.
Raising the boys meant hard labour, ploughing the land, growing crops, getting the harvest in, keeping some livestock. This hard work meant the boys could go to school, get an education and aspire for a better quality of life
Fast forward another 50 years and the young widow, now an elderly woman living in Yorkshire struggled to acclimatise to the changing world around her.
But what was it that was changing?
She had began to struggle in communicating with the grandchildren to whom she used to tell stories about the Indian Princes and Princesses, the tales of the sly fox, the riddles of old India (Pakistan). These children grown up into young men and women and were now talking in a language alien to her; they couldn’t understand why she would get up every so often, wanting to go and tie up her animals. She needed to go speak to her mum who was calling her. But the room and the layout of the house had changed. Where there were old wooden doors were now painted shiny doors, in place of the earth floor and the mud plastered walls of her house was a carpet with funny shapes on the floor and painted smooth plastered walls. She was being given fancy food in colourful fancy utensils instead of her old chipped plates and the roti that had been kept from that mornings breakfast was replaced with warm fresh chapattis – soft, thin and fresh rather than the hard chew ones.
It wasn’t the ‘jinns’ making her behave erratically, nor was it the fact that she was being treated any different so what was going on? The GP said there was nothing to worry about and it was a part of normal ageing. About a year later she slipped and had a fall, which didn’t help the situation. The deteriorating situation was further exacerbated by her younger son playing politics with her emotions; removing her from the care of the older brother and his family – simply to create havoc for the brother – family politics for you. To-ing and fro-ing the old lady was becoming very unsettled. “You are not being cared for, they take your pension mother” were the unkind words used to create cheap points not realising the damage that was being done.
Eventually, unable to care for her, the younger son “dropped her off” at the older siblings doorstep – “…after all you are the older sibling and it’s your duty to care”, he said. The lady – who was also diabetic began to struggle to remember if she had eaten, asked why was she needing to take tablets? Why was mother always calling her? and why were these strange young men in the house stopping her from going out of the room to go see mother?
Time passed and she found it harder to communicate, difficulties with speech increased, the ability to hold a meaningful dialogue was disappearing and before long personal care became an acute need. The son and daughter in law were grateful that the ‘Nurse’ would come along to see her – except of course when the District Nurse decided to clip the toenails – cutting and making a toe bleed – rather than arrange for a podiatrist. When asked by the adult children who was the Nurse? What does the GP say about the deterioration? The father would say no one was really communicating with him.
Being told “But you are a carer dad”, fell on deaf ears because there was no such thing as a carer – he was a son. Looking after Mother was intuitive no questions asked and not up for discussion. “Hadith states the rights of the mother carrying you for nine months, giving birth to you and feeding you as a baby can never be paid off” he’d say. Slowly but surely the wider/extended family stopped checking on the old lady, the nephews and nieces were too busy but not too busy to give opinions on how the old Aunt should be looked after.
The months passed by and the day came… the old lady returned to her maker. Her carers – son and daughter in law, took comfort in the scripture “every soul shall taste death”. The grandchildren and great grandchildren were distraught. The theatrical storyteller, the loving caring grandmother, the matriarch of the clan was no more. It was the first time death had been seen from so close.
A few years passed and one of the lads came across a condition Social Services were referring to as dementia. But the characteristics of it were synonymous with the ageing grandmother – the final years that were the norm in getting older. Four years later the son died too having never really understood why Mother had gone through a difficult patch at the end of her life.
A few years on n 2006 a ‘calling’ was made. Meri Yaadain was set up.
Never again… never again will we want to allow any grandmother to go through the pains of dementia without love and care being afforded, never again would we want communities – who had no word for dementia – not to become aware of this condition, never again would we allow practitioners to avoid supporting carers because they were seen to ‘look after their own’, never again would we allow service providers to use the excuse ‘hard to reach’.
The year 2016 – after 10 years of supporting BME communities – especially South Asian – the Manager was awarded an MBE. A national honour – one of the top forms of recognition from the country – the old lady’s family call(ed) home, for services to people with dementia and their carers.
The old lady was my Gran, Mirza Bi… I dedicate the MBE to her and to her son the carer who put ‘Mother’ before any institutional or service support. The son who knew that the young widow sacrificed her youth to raise him and his brother, the son who had a schooling – so even though orphaned – he was later able to teach his own kids English even before they started state school.
Thank you Gran for the education and thank you dad for teaching the value of love and care before stigma and society. Miss them both but will always see M. Bi (Mirza Bi), whenever I write MBE after my name.
Mohammed Akhlak Rauf MBE
PhD Student (School of Dementia, University of Bradford)