My mother, Anna Patricia Doyle had the joker card handed to her at birth. Rheumatic fever that kept her bound in bed for two years and left her with the legacy of a heart murmur, and prevented her from participating in anything physical in her childhood. This came back to haunt her later on in her life, she also had febrile convulsions.
In my mother’s late 40s, another isolated convulsion came out of the blue and at the age of 59, my mother was dealt the cruelest card in the pack. After two minor injuries to her head, my mother suffered a stroke. It was a major stroke, no actually, it was the mother of all strokes. This ‘stroke’ was not a stroke of good luck or even a stroke of misfortune, it was a stoke that would keep my mother in hospital for the next three months, first as a vacuous body in a coma and then as a person who had fundamentally changed. She might put on other people’s clothes, after mistaking their wardrobe for hers. Or she might wander phantom-like through the corridors of the Stroke ward at night, answering the ward phone whenever it rang (she was an ex nurse).
After three months, the hospital needed their bed back and so a meeting was held with the pre-decision made that it was in everyone’s best interests that my mother should be sectioned. My mother had won a one-way ticket to hell with no hidden extras, no upgrades or returns. My sister and I, who were both present at the meeting, knew that out mother would not survive this journey, we knew that she would end up marooned, a foreigner in a strange land. We knew that the waves of dementia inside her head would quickly drown out any remaining sparks of rationale.
And so, the decision was made that my mother would go home, the home that she had left three months earlier, the home where one night she went to bed a feisty, independent, attractive, vibrant workaholic at the age of 59 but who never awoke. That night, my mother, that is, my true mother died. A death before death. The Grim Reaper’s younger brother, Dementia had come a-knocking and now she was gone.
We attempted to carry on as normal, my mother after all was still a grandmother, a mother, a sister, an aunty and a friend. But it was not ‘normal’ nor would it ever be again. My daughters, who were 7 and 12 at the time, were on their own with her once. After a dramatic scene on a bus, this was never to be repeated. My sister lived in London, working full-time and I was a single parent, doing three jobs to make ends meet. My mother’s two sisters lived in London and had their own lives. My mother’s friends appeared to drop off the edge of the world’s surface, the last one made a hasty retreat when my mother, out with her one night, became ill in a restaurant.
Life from that point, appeared to be a continuum of endless telephone calls - from the police who had found my mother in a strange place; or from members of the public, reporting her as a drunk because she was behaving in a weird way; or from nurses at the local hospital saying that my mother had been found ‘fitting’ in public (the stroke brought with it mass epileptic episodes) and that she was now in the emergency department. These calls would come at all hours, whilst I was at work, (called out of classrooms); while on dates with sympathetic suitors and I would jump into my car and race off to the hospital to find my mother with her clothes cut off, tubes feeding life-fuelling medicine into her veins, her face and body covered in blood and bruises from where she had fallen. For a period of time, this happened so regularly that I stopped rushing to the hospital, I realised that I would be of more use to her when she awoke. Eventually, medical professionals managed to make my mother’s medication stable. The falls and blackouts decreased, my mother was able to stay in her home for another nine years.
When my mother was 60, she moved into a warden-controlled flat. There was a warden on duty five mornings a week and emergency pull cords. In addition to this, after one particularly severe relapse, (which resulted in an extended stay in hospital and a period of respite in a nursing home), social Services organised a carer to come in twice a day to aid my mother with her medication. And she is still in this flat.
What you have just read is a very brief history of my mother’s illness. Some information has been erased from my mind during the past 18 years, other information has been omitted to prevent it becoming an article that would rival War and Peace. And yet, my job here is not yet done.
You see, there is a job that needs doing, a mission if you like, and it is a serious kick-ass mission, not suitable for the meek or for the mild. It is a mission to make people listen, to rip off the invisibility cloak from the unheard old and sometimes young. It is a voice, in this case, it is my voice yet the words that I speak do not belong to me, they belong to others, they belong to my mother and the 750,000 people in the UK suffering with Dementia (Alzheimer’s Society) and these words need to be heard.
My battle cry, for I do not wish to whisper, starting forming 18 years ago, when my mother lay in a coma, (my sister remembers it being a weekend), in a hospital bed, lips cracked from thirst. We asked the nurse on duty if my mother could have a drink as she was obviously very thirsty, but she was not allowed one because there was no medical professional on duty to check my mother’s swallow reflex.
It continued during the months spent in the Stroke Unit, when I would visit her during my lunch breaks and again after school in order to bathe her and to ensure that she was wearing her own clothes.
It crossed the ten long years spent in her own home with no care or interventions set in place, just an ambulance collection service, a streamlined service where they would pick my mother up from some local gutter, patch her up and send her off on her merry way.
Then finally it arrives at her warden-controlled flat. A warden, whose job description I am led to believe is: ‘You are obliged to socialise with the hale and with the hearty’. A compassionate warden who, when my mother has problems with her electricity or plumbing is informed by her that she must phone her daughter.
Then there are the carers, organised by Social Services. Carers, who left my mother in the dark after a power cut for two hours. Carers who left my mother (who had accidently caused herself serious burns on one of her hands) with terrible blisters where the skin was ripped away for two days before informing me that my mother had a single blister on one of her fingers. One carer who helped my mother to dress for the day in a bright pink fluffy night top, some stained jumper and trousers with yesterday’s tights still caught up in one of the legs. Carers, who whilst I was away helping my sister to scatter her husband’s ashes, did not venture out of their way to assist my mother with washing or bathing - I was informed ten days later on my return that this was due to my mother not having any hot water (my mother has an electric shower). The list goes on.
My mother now has new carers, again organised by Social Services, and again a catalogue of errors is already building. I can no longer communicate with them and have handed over the reins to my sister, for I have forgotten how to speak and now can only shout.
My mother has a case worker, who believes that my mother is independent and more than able to stay in her own home. Medication is locked away in a safe, spare keys securely hidden outside, newspapers delivered, white boards emblazoned with the days of the week and the months and seasons of the year. My sister talks to my mother every night; I visit a few times a week, clean and look after her money and she survives.
Teenage-like now - knickers, tights and dirty clothes adorn the floors, evidence of fish and chip dinners lay around the flat and fag-filled ash trays wait expectantly on the smeared coffee table. But unlike the average teenager, who chooses solitude as an expression of self or as a vacation from a super fuelled life, solitude has chosen my mother. There are no friends who choose to visit, no clubs to be assimilated into, no books to get lost in. She is alone. She is lonely.
The population of the UK is ageing. The proportion of people aged over 65 rose from 15% to 17% from 1985 to 2010, an increase of 17 million people; this is projected to reach 23% by 2035. Elderly people account for most of the adult social care service users and of public spending on adult care. In the UK, the cost per year of residential care is on average around £29,270 rising to over £39,300 a year if nursing care is available. These figures point a crooked finger towards why the majority of the focus of health and social care services for elderly and vulnerable people is based on the promotion of independence.
Yet, this independence comes at a cost, not a monetary cost but a cost, which holds much more value. If we place someone who has scaled the entire dizzy heights of Maslow’s ‘Hierarchy of Needs’ as rich, my mother is poor, overdrawn, bankrupt, just scraping at Maslow’s heels, her basic needs of food, water, warmth and rest barely being met. This surely illuminates that this promotion and ‘gift’ of independence, has grave implications when it comes to vulnerable people living on their own.
According to statistics, we will be slinking around as silver foxes for longer than our ancestors (80 is the new 50 and all that). Yet, don’t dust off your disco pants just yet as skulking in the shadows is Grimm’s younger brother and he is rather excited by this news. You see, the risk of dementia increases with age (he is now clapping his hands in glee) with The Alzheimer’s Society’s figures showing that 98% of the estimated 750,000 people in the UK with dementia are aged 65 or over.
And so we need a call to arms, we need to make a noise, we need to shout, we need to peer over care-givers’ shoulders and question those in authority. My mother’s story and history of care (or more accurately lack of care) is not isolated. We have all read the horror stories.
We, as a society, need to fight, we need to fight for the provision of tailor-made care, tailor-made for all individuals, not just the privileged (as we all know that one size does not fit all especially if like me you are a curvy sized 16). We, as a society need to ensure that care, as we get older, provides the relevant footholds to enable all individuals to pat Maslow on the head with all basic, psychological and self-fulfillment being met. We, as a society need to ensure that those who manage the care of the vulnerable and older are held accountable and that they keep a close check on its relevance, quality and the manner of delivery.
We are the voices of the future, we are the voices of our mothers, fathers, loved ones, and we need to make ourselves heard, we need to stop talking in whispers and instead daub ourselves in battle paint and practice our roars. It will be us next.