Talking Sense Volume 45 No 1 Spring 1999
Is 'carer' an appropriate term to use in relation to people with Usher? Not everyone thinks so ....
Most of us who are involved with other people have some caring responsibilities: at times we look after others; at times they look after us. So it is, too, for people with Usher. While some may be supported by a parent or partner, some people with Usher themselves care for others such as children, partners or elderly relatives. It is a complex and various picture.
Perhaps the image that most readily springs to mind when we think of a carer is that of a parent and child . Certainly caring for a child with Usher is immensely demanding. Julie Akers, whose 13-year-old son Thomas has Usher 1, says it's not the physical caring which is exhausting, but the emotional aspects: "You don't want your child to suffer: you'd do anything to have it happen to yourself instead of them. It's a wicked thing that not only is Thomas profoundly deaf, but is also losing his eyesight . There is sadness, worry, and the terrible fear that he'll be in darkness and silence."
Julie felt desperate in the early years. "As a nursing sister I knew something was wrong from about eight weeks but no one believed me and I was labelled as neurotic. Although at 13 months he was diagnosed as being profoundly deaf, we weren't given a reason and I knew there was more to it than this.
"I was overwhelmed with anxiety . It went on and on and affected my whole life - I couldn't ever relax or think about anything else. I completely focussed on Thomas and had nothing left over for anyone, including my husband. The demands of caring quite often cause marriages to break down and this is what happened to Julie and Jeremy: "It put a terrible strain on our relationship and we split up more or less straight after the diagnosis."
When Thomas was five Julie read an article in Talking Sense on Usher syndrome She realised this was what he had and ( though her GP called her an "overprotective mother who needs reassurance") a specialist at Moorfields confirmed the diagnosis. Julie felt "hysterical, desperate, hopeless" but soon after "went into fight mode." From then on she fought continuously - to get Tom into a special school, to raise funds to find a cure ...
Adolescence is another difficult time. In most families there's some conflict and battles for independence but here mother and son have to deal not only with normal tensions but also the worsening of Ushers. Every so often the subject comes up and Thomas asks more questions: "Will I have a dog? Will I fall over?" It's also time to change schools and his means of communication - he is taking up sign language.
Julie must have done a great deal right. Thomas is a happy, healthy, adventurous boy and has a good relationship with his dad who takes joint responsibility. But she recently realised "My whole life was Thomas and Usher and I was absolutely worn out. I had to focus a bit on myself."
After taking a refresher course in nursing she has returned to work as a district nurse. "I 'd lost all confidence and thought I was on the rubbish heap but now I'm in the world of work and it's good. I couldn't have gone back before but this was the right time for us both. Thomas is so proud when I turn up at school in my uniform."
Caring for a child with Usher is, says Julie, terribly draining . "I've gone through awful times and still have huge waves of fear and grief, but there are also good days when I think he'll be OK - and these are getting more frequent. I am the most anxious, neurotic mother, but I've got through it, so others can. You just mustn't lose heart or give up hope."
"It's teamwork"
Thomas is growing fast into an extremely independent and capable person . Some adults with Usher who lead very independent lives find the term 'carer’ inappropriate. So do their partners. Steve Cumming, for example, married for 17 years to Janet who has Usher, says "Other people may see me as a carer but I don't see myself as that. Our relationship is that of husband and wife, not carer and cared for - it's teamwork."
He says that Janet's parents warned him of her condition before they married: "I thought, "Oh my God she's deaf and now this ..." They said "If you want to walk out the door, it's fine." But I didn't - I wanted to marry her."
Janet has a job, does the housework and together with Steve looks after Michelle, 13 and Suzanne, 10. Steve has a job, does the housework and, since he can drive, takes Janet to the shops. When they first had children Steve says social services were very concerned about her ability to look after them: "They wanted to get them into school early and were worried about their development, learning to read and so on. But they've done really well and are two of the brightest girls in the school."
Although he rejects the term carer, Steve admits there are caring aspects to his role, such as interpreting for Janet during hospital appointments: "Nine times out of ten they can't communicate with her." When pressed on any stresses he mentions their social life: "I can't fully relax if we go out as I always have one eye on Janet. Her peripheral vision is zero and she also has cataracts, so I have to make sure her glass of wine isn't too near or that people are talking to her. And I don't like to go out much socially on my own and leave her alone."
They seem to have a very happy marriage. "I do worry, but in the back of my mind I know she's fine," says Steve. "The day may come when Janet says ' I can't do this', but we'll sort it out from there."
"I just get on with it"
Any remaining preconceptions one might have about carers are overturned by Anne Stokes (name changed). She is divorced, holds down a full-time job, lives with her two teenage daughters (19 and 16) - who are both hearing - and also cares for elderly parents who are both deaf and unwell.
She doesn't see herself as a 'carer’ although she undoubtedly has heavy caring responsibilities. In the case of her children she says "I'm their mother, I love them, so of course I'll care for them. Teenagers, though, can be even harder work than babies!" In the case of her parents, caring sometimes takes the form of mediating with social services. The social worker can't sign so communication often breaks down and I have to fight for them both to get the appropriate level of communication.
Anne was diagnosed with Usher when her children were six and three. As they grew up she resisted leaning on them: "I didn't want them to feel I've got to be responsible for mum because she's got Usher and encouraged them to be adaptable, independent individuals - which they are. I had no particular support when they were growing up and since separating from their father have more or less brought them up on my own."
Looking back, she says some things would have helped - counselling after her diagnosis and around the divorce; a taxi and interpreter for parents' evenings ( which she often had to miss) ; closer communication with her children's school. She would like Minicom access to a helpline for parents : "Deafblind UK have a helpline but I want to talk about other things (not Usher) such as my divorce, the fact that my children are at a difficult age, my parents.
"It's really hard to get the right information and help. I can't just pick up the phone - I have to use Typetalk. I leave a message but then people don't get back to me. And so often in shops, supermarkets or travelling to work the most simple requests are met with panic."
So who cares for her? Anne admits that "It's hard for me to ask for support. Pride is involved - I just get on with it. I do feel very responsible, but I'm lucky in that I have good friends who are aware of my difficulties. They know I'm independent and recognise when to offer me help and when to withdraw. It's far harder for people who are isolated."
Allthough she sometimes "just wants to run away", on the whole Anne copes well, seeing "every day as a challenge but not necessarily a problem. One of the most important things in my life is a sense of humour. I could spend the whole time crying - but prefer to have a laugh!"
Talking to people with Usher and their families makes you realise we are all bound together in a web of caring. But it's a kaleidoscopic picture, with many variations in those who care and those who are cared for.
By Francesca Wolf - with thanks to Julie Akers, Janet and Steve Cumming, Anne Stokes and Carol Pollington.
A strong view ...
Carol Pollington, who has Usher 2, gives her reasons for disliking the term 'carer'
"Clive and I have two daughters, little money and some wonderful times. When Usher started affecting my life in my 40s I worked hard to maintain self- esteem and our marriage's equilibrium. So Clive drives, hoovers ( I miss the dog hairs), has a full-time job, walks the dog, and I do the washing, ironing, cooking, gardening, household finance and hold two jobs. We call this partnership.
"Then someone comes up with this word and suddenly my partner is my 'carer’. What does this make me? Someone to be 'looked after’? No one calls me his carer though I cook his meals and iron his shirts. No, because 'caring' is linked with disability. Why should impairment imply inequality? I have an impairment therefore I need caring for and my husband is cast in an unwelcome role. He wants to be my lover, not nurse or carer.
"Language is powerful and insidious. Words subtly influence the way we see and act towards someone which in turn affects how they see themselves - especially if they are disabled. Though caring's original meaning equates to love and concern, since the Government co-opted the term it has become synonymous with 'looking after' and 'duty’.
"I do not deny all Clive does, but he does this naturally in the same way I do things for him. We don’t need terms like 'carer' to bring imbalance to our relationship and threaten my hard-fought independence. So.. call him my partner, communicator-guide, long-suffering husband ... but please, not my carer."
