Looking back on it, Sue’s always been a carer. Being the eldest of five children growing up in Carbrook, she soon took on the duties of helping out with her younger sister (Margaret) and brothers (John, David and Peter), as well as others in that close-knit community. She remembers how the adults would get the older girls to take a string of siblings up to High Hazels Park, giving them a penny for the bus and a penny for the return. Of course, being typically resourceful kids, they spent the pennies on sticky buns and walked the distance.
Not that her Mum didn’t care. Far from it. Sue describes her parents as being the most loving and caring people, working hard and making sacrifices to make sure the children didn’t go without. Her Mum was a carer for others too – a carer in the sense the word is used now, but wasn’t then. With her Dad working full-time, her Mum was left in the traditional role of looking after relatives – first her own mother-in-law (who lived on Lyons Rd) and, in later life, her sister and his husband, Sue’s Auntie and Uncle. Sue helped out and gradually took on more and more of the role. It was a sound apprenticeship.
From Carbrook, the family moved to a maisonette on Andover Drive, a very happy family home for Sue. She remembers a close, supportive community. Tragedy hit when her Dad died in a sudden accident. The loss was unbearable. Now, 30 years later at her home in Firshill, Sue’s eyes still have tears in them as she talks of how her Dad loved her and she shows me the photographs. She looks like him. If it was possible to bring her even closer to her Mum, the bond was now watertight.
Now her own mother is elderly, partially blind and moving in and out of dementia. She fought the battle to get her Mum moved to a house close by her and now provides daily care. Her Mum won’t have it that she needs so much care and says, “she won’t carry a white stick because then people will know she’s blind”. She likes to have her daughter around but, Sue says, they’re so alike, both strong-willed; they both need their own bit of breathing space from each other at times.
The family moved on to Shirecliffe soon after her Dad’s death; the happy family home was too much for her mother to bear. Before they were demolished, Sue arranged to go back. A man from the council let her in and she left some flowers. She found the message her brother David had written on the bare floorboards in model aeroplane paint, “This is a nice house. Please look after it.”
The family moved on. Sue was working. She married Andy. At the age of 36, her son Ben was born. She looks back and says, “it was a shock when I found out but I knew in the back of my mind from day one really.” At 9 months, her health visitor raised concerns about his development and she felt the shock of reality. The doctor started off the long, long process of referrals, assessments, diagnosis, discussions, meetings and consultations, arrangements for support and offers of help. Ben has a rare condition called Soto’s syndrome. Ben’s now a tall 16-year-old with a love of heavy metal music – black leather jacket and long hair to complete the image. It’s meant solid work as a carer for Ben too over the years, attending to every detail of his life. Ben now goes to East Hill School, but this is his last year there. Sue and Ben now face the challenges of arranging a place in college for September.
Sue now has an awful lot of experience as a carer and all the arrangements are now in place – she is used to dealing with social services, benefits, education provision, etc – but it wasn’t always like that. For Sue, it felt as if she was on her own when Ben was first diagnosed. Later on she says, as she got into the system, “it all started rolling”. But that also brought new demands on her commitment and she tells how she had to get a huge calendar just to plan all Ben’s appointments. Dealing with everything – practically as well as emotionally – was a lot to cope with and of course something she could hardly have planned for. Over time, she’s become used to the way doctors deal with you. Now it’s like in America, she says, meaning that the doctors tell you the worst possible scenario so they don’t get sued. When things don’t turn out so bad, you’re pleased, but at first it’s incredibly hard.
What strikes you about Sue is how positive and generous she is about the people who have helped her over the years. She talks about some of the wonderful people who have helped her along the way – the health visitors, Dr McCullough at Pitsmoor surgery, the staff at Ryegate Children’s Centre, Betty Gelsthorpe at Ivy Lodge Clinic, Pippa at Burngreave Young Children’s Centre, Keith Jenkins at East Hill School and John Lawson at the Carers’ Centre are a few of the names she mentions in conjunction with words like “brilliant", “marvellous” and “wonderful”. Only rarely – and it shows she’s not just naïve and accepting – is she critical of those professionals who just don’t’ seem to care. She wastes no time with them, saying her piece about how they let the system down – and then moves on. She always returns to the people who have helped, the people who care. Has it taken a toll on her, these forty-five years of caring? She’s currently responsible for 2 people full-time and provides hours of care. She’s done the sums and knows the carer’s benefit and social services money works out at about a pound an hour. Anti-depressants have helped her for the last 10 years.
She’s learnt to cope, though, and to regulate herself, to balance out her time and activity. Even though she doesn’t seem to recognise her skills as a manager, she’s obviously very experienced at it. She knows when she needs time out and she’s skilled at planning it. She’s got a week without her Mum soon, when her niece is taking her on a holiday. She knows her Mum will enjoy the trip, but she also knows she needs the time for herself. “I need a rest. I just need someone to help out, sae says.” Other than that, she goes out with her husband once a week, a necessary relief.
Being a carer has opened her eyes to how caring is seen and to think about the wider issues – how so much is taken for granted by so many people. She talks of going to a carers’ event at the City Hall and meeting actress Pam Ferris (out of Where The Heart Is). “I just went in and shook her hand and thanked her,” – Sue gushes at the memory. But the response was almost a secret whisper from Pam: “us carers have got to stick together.” Sue knew then that Pam was talking from experience.
In 2005, she went back to college and studied the Introduction to Community Development and Health course at Ellesmere Young Children’s Centre. She was nervous at starting it because she never thought she was “clever” but she says she learnt a lot about herself and tells how it brought out all the feelings that she’d put to the back of her mind. I’m impressed by the several folders of work she shows me, the displays and presentations she’s produced for the course. She looks at some notes she’s written about where she’d like to be in 5 years time – back working in the hospital she enjoyed so many years ago, living in a house with a swimming pool and hoping her husband’s health is OK.
Well, Andy’s not doing so bad now.