Parents Under Pressure - Caring for an Eating Disorder Sufferer
November 3rd 2007 20:59
Interviews with parents who care for eating disorder sufferers have identified the severe pressure they often face, but also the fact that minimal professional support that is available for them.
Whilst the majority of therapy and support is made available for sufferers of anorexia and bulimia, relatively little is available for parents and siblings who too feel in need of support. Many have a lot of worries and concerns and would like to speak to parents in similar situations rather that having to cope alone.
The need for a holistic approach to treatment has been identified,
One mother said,
Another said,
Support for people with eating disorders is sometimes difficult to obtain but help is available. Meanwhile families are left suffering just as much with the day to day realities of living with someone who is ill and clearly disrupting the family dynamics.
As one mother said,
Parents often feel out of touch with their child and the only measure they have of how they are doing is a visual assessment of their weight and their behaviour around food. Whilst many said they appreciated patient confidentiality they would have liked some guidance as to what they could do to help but were not offered this. For some it seemed easier to say nothing at all thus increasing the sense of isolation each family member was feeling. Many wanted a support group for carers in their local area or at least someone they could talk to but nothing was forthcoming.
Father’s too are left feeling just as desperate, “
Where the child was living at home it was clear that the illness dominated family life,
Parents have been left wondering where they went wrong and have tried to explain how they never put any unnecessary pressure on their child. All each parents wanted was what was best for their child and it was to their total bewilderment that one of them ended up with a potentially life-threatening illness.
Parents have reported finding it difficult to get the balance right between the time they share with each of their siblings,
Parents have reported displacing their anger on spouses or their children, not wanted to provoke an argument with the ‘sick’ child,
Extended family members are also affected,
Clearly more support is needed for the carers of those with eating disorders particularly in terms of access to local support groups. G.P’s also need to be more forthcoming with information even if it is just a reading list for parents to take away. Those parents that have felt most fortunate are those who are able to talk together about their child’s illness and share their anxieties and concerns.
Useful Resources
UK
Leicester University - Eating Disorders Service www.le.ac.uk
Beat - Previously the Eating Disorders Association www.b-eat.co.uk
Australia
Mental Health Foundation of Australia (Victoria) www.mentalhealthvic.org.au/
Eating Disorders Association of South Australia www.edasa.org.au/
Whilst the majority of therapy and support is made available for sufferers of anorexia and bulimia, relatively little is available for parents and siblings who too feel in need of support. Many have a lot of worries and concerns and would like to speak to parents in similar situations rather that having to cope alone.
The need for a holistic approach to treatment has been identified,
“One of the cruellest aspects of eating disorders in the family is, to my mind, the personality change. I have almost begged mothers to hang on to the fact that underneath the abuse and blame hurled on them by their daughter, is still the much loved and loving child. It’s the illness talking, not the real person. In this context I do feel that just as homeopathic medicine treats the whole person, so should professional treatment be aimed at the whole family, as a unit, not divided into family - sufferer.”
One mother said,
“I felt totally alone. I was attending an outpatient psychiatric appointment with my anorexic son on a weekly basis, but whilst I was on the verge of a nervous breakdown all the psychiatrist seemed to be interested in was Jason’s weight.”
“Personally I have probably felt every emotion there is since this started, and now, seven months down the line, I feel very tired and often depressed and also uncertain ... In lots of ways I feel there is a grief process involved here, I am needing to mourn the child that was and should be, and there’s a stranger instead.”
Support for people with eating disorders is sometimes difficult to obtain but help is available. Meanwhile families are left suffering just as much with the day to day realities of living with someone who is ill and clearly disrupting the family dynamics.
As one mother said,
“I could see Helena was cutting out certain foods especially cheese, chocolate and biscuits which she had previously loved. She was getting thinner by the day but would adamantly deny there was a problem. Eventually her school nurse convinced her to go and visit her G.P which she did, but she insisted on going alone. She refused to let me go along with her yet I was frantic with worry and desperate to speak to our family doctor. Hannah still sees him weekly, but I have no idea what they talk about or if her weight is even mentioned. All I know is that she is getting thinner and I am being left totally out of the picture, totally cut off from my own child.”
Parents often feel out of touch with their child and the only measure they have of how they are doing is a visual assessment of their weight and their behaviour around food. Whilst many said they appreciated patient confidentiality they would have liked some guidance as to what they could do to help but were not offered this. For some it seemed easier to say nothing at all thus increasing the sense of isolation each family member was feeling. Many wanted a support group for carers in their local area or at least someone they could talk to but nothing was forthcoming.
Father’s too are left feeling just as desperate, “
I work long hours so I am out of the house a lot of the time and I never know what I am coming back to. Sometimes both my wife and daughter have been in tears or I’ve interrupted them in the middle of an argument, always over food. I don’t get as outwardly upset as I feel one of us needs to try and ‘hold things together’ but I feel just as despairing as my wife, I have no idea what to do despite all the books I have read on bulimia, I don’t know what the ‘correct’ approach is. I worry that my daughter Karen will feel I don’t care because I don’t get as hysterical as my wife but inside I feel the same hurt and a terrible, indescribable sense of loss.”
Where the child was living at home it was clear that the illness dominated family life,
“I suppose you could say we were an ‘anorexic family.’ The family consists of me (mother), Louise’s father, and her elder brother Andrew. I suppose it affects me most as I spend most time with Louise. She has had five inpatient admissions over the years to a top London hospital and she is very much governed by the times of meals there and will not be flexible, so things are very much ruled by Louise’s meal-times, days-out, visits etc.., have to be times exactly, and if we should be late there is a chance she won’t eat at all. When I go to work I write down what she has to eat, and sometimes she will ring me at work to check she really has to eat it. I get up at 7.00am everyday to help her with her breakfast. I cannot remember the last time I had a lie-in.”
Parents have been left wondering where they went wrong and have tried to explain how they never put any unnecessary pressure on their child. All each parents wanted was what was best for their child and it was to their total bewilderment that one of them ended up with a potentially life-threatening illness.
“We have looked forward, not to glittering careers, but to happy, intelligent children with so much going for them.”
Parents have reported finding it difficult to get the balance right between the time they share with each of their siblings,
“Certainly the balance has changed in the family, in all sorts of subtle ways; for example allowing Sara not to take her fair share of household jobs, because we don’t want to upset her and her then to stop eating. It has needed a lot of time and energy to cope with Sara, and to not let her older sister, seventeen, and making decisions about university, feel we are no longer interested in her. It has certainly widened the distance between them, both emotionally and in level of maturity, and also in the experiences they are able to cope with; last summer Jane spent two weeks in San Francisco with friends of ours, an experience Sara would be unable to cope with at the same age, if only because of the food aspect.”
Parents have reported displacing their anger on spouses or their children, not wanted to provoke an argument with the ‘sick’ child,
“The evening meal, which we eat together, is now an uneasy compromise between what we would normally eat and what Sara will eat. And of course there’s the usual displacement of anger and frustration which I don’t express to Sara, onto one’s nearest and dearest, John. Maybe we’re doing the wrong thing in not letting Sara see how upset we get, but there does not seem to be anyone to say if that’s right or wrong. Anorexics can be very intimidating because they literally hold the power of life and death, and the last thing their parents want to do is tip the balance the wrong way.”
Extended family members are also affected,
"We are contacted about every ten days with some upset or other, the children crying in the background. Joanna (our daughter-in-law) says she has been discharged from her local hospital where she says she has been having treatment for anorexia, she says she knows she is better and wants to start some form of counselling service for fellow sufferers! We can see she is ill, and has admitted to me she has joined A.A. I found empty drink bottles years ago when I baby-sat for their first child. These outbursts are generally prior to the children going to bed. My son is at the end of his tether, he runs his own business and is so stressed he wants to get away from it all. Last summer I told him Joanna needed help desperately and that he should support her more, go to the hospital with her, when he did go he was not allowed in.”
Clearly more support is needed for the carers of those with eating disorders particularly in terms of access to local support groups. G.P’s also need to be more forthcoming with information even if it is just a reading list for parents to take away. Those parents that have felt most fortunate are those who are able to talk together about their child’s illness and share their anxieties and concerns.
“We both have the same attitude and we are able to support each other and thereby provide a ‘safety net’ for our child."
Useful Resources
UK
Leicester University - Eating Disorders Service www.le.ac.uk
Beat - Previously the Eating Disorders Association www.b-eat.co.uk
Australia
Mental Health Foundation of Australia (Victoria) www.mentalhealthvic.org.au/
Eating Disorders Association of South Australia www.edasa.org.au/
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