A stroke plunged my mother into the abyss of 'care'. Despairing daughter describes a hospital where one shower a MONTH was the norm, carers who could hardly care less and loved ones driven to brink by exhaustion and spiralling costs
This photograph of my 81-year-old mother, taken on her favourite Yorkshire beach on a chilly May day this year, sums up the woman she was: spirited, fun, hale and hearty.
Remarkable for her age, Mum still power-washed her drive, cooked a Sunday roast most weekends and even went line-dancing weekly.
Looking at this picture today breaks my heart. I took it shortly before Mum suffered a severe stroke that left her unable to speak or walk and confined to hospital for three miserable months.
Loved: Janet Appleyard (right) with her daughter Mandy (left). Janet suffered a severe stroke that left her unable to speak or walk and confined her to hospital for three months
It has changed life for her, and my sister and I, for ever. Last month, we reluctantly moved Mum into a care home, guilt-ridden and broken by the challenge of being her full-time carers, thanks to a social care system that not only dehumanises and mistreats the vulnerable, but stretches their desperate loved ones to unimaginable limits. So it was with little surprise that I read in the Mail last month of the appalling toll of the social care crisis on women, who all too often make up the unseen army of carers.
These women confessed to not sleeping, eating or caring for themselves properly, thanks to a life where their sick parent, husband or relative was constantly put first. Depression, loneliness and other illnesses were their rewards for such personal neglect.
I suggest guilt should be added to that list, because most women, I’m sure, want to be able to help care for their relatives, to honour parents who have given them so much and to preserve their dignity in old age. Yet they find themselves destroyed by a system that seems only to hinder them in that task.
Permanent care homes are so often the only ‘solution’, which, for many, leads to a terrible sense of guilt that they’ve abdicated responsibility in their loved ones’ greatest hour of need. As I can testify, the corrosive guilt doesn’t stop there: the trials of being a carer can make you angry, even resentful. You feel as if you’ve surrendered your own life. Indeed, as I have learnt, being a carer eclipses anything else.
Janet Appleyard, aged 81, pictured before her stroke on her favourite Yorkshire beach on a chilly May day this year
Today, I’m left feeling strongly that my mother, Janet, deserved so much more than this. She’s lived a dutiful life: raising me and my younger sister with tenderness, working full-time as a secretary for most of those years; caring for several elderly relatives; running a ship-shape home, even baking bread and cakes every week for those she loved over 60 years.
When widowed in 2014, after 58 years of marriage, she adapted well to life without my beloved father.
Then came catastrophe. On May 15, after collapsing at the bus stop on her way to a dancing session, she went from being Janet to a simple statistic; one of the 100,000 people in Britain who suffer a stroke every year, and one of the UK’s 1.2 million stroke survivors, a figure predicted to rise to 2.1 million in 2035.
The day after her stroke, on the ward at Hull Royal Infirmary, Mum writhed in distress at finding her left side paralysed, her face drooping on one side, unable to speak.
Helplessly, my sister and I realised with horror that life had suddenly changed beyond measure for us all.
As shock subsided, the shortcomings of the NHS proved to be the next circle of Hell. Those early days were a blur: nobody communicated with us. Mum’s consultant was elusive and condescending; hard-pressed nurses, physios and speech therapists were spread impossibly thinly, and we were surprised to learn that one shower a month was, apparently, routine.
Aged 81, Janet still power-washed her drive, cooked a Sunday roast most weekends and even went line-dancing weekly
On May 15, after collapsing at the bus stop on her way to a dancing session, she went from being Janet (pictured) to a simple statistic
Mum, clearly frightened, was in shock at what had happened to her. By miming a gunshot to her head, she communicated that she wanted to die. And, while I understood how she felt about living in such diminished circumstances, I felt panic-stricken that Mum — previously always undaunted — now wanted to die.
I asked her to give it time. My sister and I hoped that Mum’s next stop — a community hospital where she’d go for several weeks of ‘rehabilitation’ — would be more positive.
But it wasn’t. In her five weeks there, her burst and displaced catheter left her in agony, yet was apparently ignored.
How had we gone, in a blink, from a functional family to what felt like frontline soldiers at war with the system? ‘Why us?’ my sister asked. ‘Why not us?’ I wondered.
As the weeks passed, Mum made some improvement. Her speech got a little better and she learned to sit. When the hospital discharged her in August, we hoped her return home would be the tonic she needed.
Instead, she returned to the house she had lived in happily as an active woman to find she couldn’t cook in it, clean it, reach the bathroom or the garden without help, or answer the phone or front door. While she struggled to communicate, she managed to tell me she felt ‘sad beyond words’ to be so incapacitated in what was her prized domain.
It was now that our family disappeared down the rabbit hole of State social care, as Mum was placed on a six-week intermediate care package funded by the council.
This entitled her to an hour’s visit by a carer in the morning, then half-an-hour each at lunchtime, teatime and bedtime: 2.5 hours of care in every 24.
I wonder how many people would be willing to leave their elderly parent home alone day and night but for four brief visits by strangers?
As a self-employed writer, I had been able to step back from work to visit Mum in hospital every day, with a two-hour drive there and back. My plan, on her discharge from hospital, was simply to ‘project manage’ the first few days of her homecoming, then get back to work.
Within 24 hours, though, I realised I would need to step in as a carer. It was immediately apparent that leaving Mum alone in the house for 21.5 hours a day was impossible.
Even for the hours she was technically ‘cared’ for, those sent to help were often not up to the task.
It has changed life for her, and my sister and I, for ever. Last month, we reluctantly moved Mum into a care home, guilt-ridden and broken by the challenge of being her full-time carers. Pictured Janet with two children
While a couple of the carers couldn’t have been lovelier, despite working long days on minimum wage, others were not. Some turned up late, others claimed to have no experience of using the equipment needed to move Mum. One was psychotically moody, another had a hygiene problem, while several shouted at Mum as if she were deaf or stupid — she is neither.
While Mum put on a polite, brave face, once they were gone she was tearful and unsettled, admitting she didn’t feel safe with them. A proud and private woman, she’d been forced to endure a bizarre parade of people she would never normally tolerate.
‘Awful’ was her word for them.
And so our lives became a crash course in the challenges faced by relatives who work as carers. I dropped everything, vowing to care for Mum 24/7. It was my duty as her daughter and, more than that, I wanted to — I love her, after all.
But, by the end of the first week, I was on my knees. Sleeping in Mum’s spare room, most nights I was up three times: Mum rang a bell if she needed me, if her bedding needed changing, if she was too hot or too cold, or wanted water. Bad dreams woke her; she needed comforting.
Night after night after night.
Then came demanding days: cooking, cleaning and moving Mum between chair, bed, commode and wheelchair. Lifting an immobile body isn’t easy. Then there was the shopping, emptying commodes, medication, changing the bed, phone calls, paperwork for social services, paying bills, updating friends and relatives, reading to Mum, working with her on her speech and physiotherapy, medical appointments.
Ten days in, I sent up a flare to my 56-year-old sister who works full-time as a secretary, telling her I wasn’t coping. Having used up all her annual holiday entitlement since Mum’s stroke to be with her in hospital, she managed to arrange a month of unpaid leave and we devised a rota: she covered 9am to 7pm every day, then I did 7pm to 9am. Four weeks later, we were exhausted — and we’re both single: had we husbands and children at home, an already stressful predicament could have been worse.
I keep wondering how people do this permanently — and at greater ages than ours. I’m 59, and quickly became bad-tempered and impatient, then unspeakably guilty for feeling this way when none of it was poor Mum’s fault.
As for me, while I used to be lively, sociable, gregarious — like Mum — I looked sad and exhausted. ‘You look old. You look tired. I’m killing you,’ Mum told me, sobbing, at 4am one day. Each day, each night, brought the same demands.
For all this relentlessness, the State deems it worth a paltry Carer’s Allowance of £66.15 a week, to which you are entitled only if you earn less than £123 a week. By contrast, the cost of a private-agency live-in carer is upwards of £1,500 per week.
Two weeks in, desperate for a night’s sleep at home, I rang an agency to ask what it would cost for a private carer to cover from 7pm to 8am — some £260, an impossible sum for us.
Just as draining as the physical care was the endless jumping through hoops to get help.
Social services only visited Mum after I insisted we needed support, then told us we’d get no financial help with care fees because she owns her own home.
And, while Mum has been with her local GP practice for nearly 20 years, a doctor only came to see her five weeks after her discharge from hospital, and only then after I wrote a letter of stiff complaint to the surgery.
On top of lost earnings, we are having to pay £270 for three hours of private physiotherapy a week after being advised that the 20 minutes provided by the NHS is insufficient to get Mum anywhere close to walking again. Two hours of private speech therapy is £250 a week: the NHS provides some, but not enough, and the waiting list in Mum’s area is eight months.
More important than any financial loss is the fact that we have lost the mother we had. She was a tour de force, suddenly reduced and robbed of the speech to match her quick intelligence. She says she feels a burden and, recently, she broke my heart when she asked if she had disappointed me — and if we thought this had happened because she doesn’t believe in God.
Do I miss having an independent, active Mum with whom I chatted on the phone at least once a day? Without doubt. There is crushing grief on her part and mine that those carefree days are gone.
After family discussions, we three agreed that she would go into a local residential home for up to eight weeks to give us time and space to decide the next steps. It costs £700 a week, £480 of which is met by social services, leaving my sister and me to pay the balance.
We’re hoping she likes it; that the social company, activities and feeling of safety at being looked after by professionals will make her more at ease with life. Should she decide to stay, we will have to sell her bungalow to pay her care home fees.
But all that really matters is Mum feeling comfortable and safe for the remainder of her life.
She is still struggling with speech. She can stand, though is not walking. After a struggle with low mood, she seems a little brighter.
I asked her yesterday where she would be if she could be anywhere in the world. She said she’d like to be walking my dog, Freddie, on the beach where this photo was taken. A simple wish but, sadly, one I cannot grant her. Maybe one day. We travel in hope. Slowly, but in hope.
- For more information, visit stroke.org.uk