A daughter’s plea for caregivers

A daughter’s plea for caregivers

I have seen eating disorders pull families apart; siblings may never forgive the child with the eating disorder. These barriers can last a lifetime ….  Having the right intervention and support at the time of intervention is important. The family needs to be supported to help and promote recovery, without the sole responsibility and burden of implementing intervention on their own. – ‘K’, March 5, 2012

‘K’ lives in Sydney, Australia. She is highly educated, highly intelligent, and has Anorexia. We met in Sydney in 2011 during two major eating disorders conferences with the NEDC and ANZAED. ‘K’ was on the verge of a hospital admission, but wanted to be at the conference; she wanted to make her  evidence of experience count; she wanted to make a difference – wanted to do whatever she could to ensure that better support services are provided not only for sufferers of eating disorders, but also their families.
‘K’ has survived Anorexia by sheer grit and a determination to live.  She is sharing her story – not only to raise awareness of eating disorders, but also to drum home the message that caregivers need more support. Not next year. Now. Because families are being wrecked.
“K’ shares her story:

1987 – I am trying to take control of my life.  I have just turned 14, been through traumatic surgery, being bullied and feeling very inferior to my peers. I decide to skip lunch and go to the library at lunch time to study. Slowly I am clawing back control, and my weight starts to decrease. No one notices. I am still struggling but at least I can see that I can start to take back control of my life.
1988 – I need to restrict more, I start getting up early before everyone, I am pretending I have eaten breakfast before anyone else is up.  My sister questions me – She says you didn’t use that plate, you have not had breakfast. I am angry with her for interfering; she feels she is responsible for my eating.
1990 – My anorexia is in full swing. I am skipping breakfast and lunch, people are not noticing, my weight is dropping. I don’t want to eat dinner.  I start trying to hide my food. I am terrified I will get caught out.  Family dinners cause me so much stress. I watch my parents as I try to hide my food.  They are busy in conversation, they are stressed about work, they don’t notice as I hide my food…but damn, my sister notices, she dobs me in. Why does she have to interfere?  My parents get angry, meal times become battle zones, I am constantly wondering how can I hide my food, will I get caught?

My parents get suspicious, my Mum starts weighing me.  I have to manipulate my weight.  I hide weights in my clothes, I wear heavy clothing, shoes and belts, I can add 10kgs to the scales. But I am so scared, what if my Mum weighs me when I am not ready. I live in constant anxiety.  I don’t feel safe.  I don’t want my parents to worry, I don’t want them to get angry, I don’t want to cause trouble. This anxiety drains me. I am in a constant state of panic. I can’t sleep, I am anxious and starving.

University
By the time I start university, skipping meals become easier. I have long days at Uni, I am eating there (apparently). I am sick; I am struggling to keep going, I become suicidal and then attempt suicide. I end up in hospital and eventually get transferred to an anorexic ward. I feel isolated; I don’t understand what is going on. I am expected to eat. The nurses seem like villains, I dread weigh days. There appears to be no help in terms of recovery, we are just expected to eat and gain weight.
Eventually I discharge and come home. Mum tries to take control of my eating. She wants to weigh me and monitor my exercise. I don’t want this; I want to be in control. Meal times become battle zones, every meal is World War Three over again. Mum is angry, my sisters are angry, we are constantly fighting.  I can’t take this anymore and move out. 
Living out of home I eat nothing, I become a walking skeleton, a few months later I am on death’s door.  Mum won’t let me come home; she says it will be too upsetting for my sisters to see me. I am alone, I want help, but don’t know where to turn.  Things get so bad I agree to admit myself to hospital. But this becomes another battle. I still refuse to eat.  I am treated very badly in hospital. I am punished.  I am not allowed to see my family as I am being punished. I am not allowed to ring my family unless I gain weight. I am not allowed off my bed, other patients are not allowed to come into my room.
Isolating
Anorexia is a very isolating illness, but I was further isolated as part of my treatment.  My parents are not told what is going on. They are at breaking point. I am at breaking point. I wonder how much more I can be punished. How much more can be taken away from me?  I must remain strong. The world is wrong. I must be strong in my illness and fight the world. 
After being hospitalised for months and not gaining weight I am told to go home, there is nothing more that can be done for me.  I am to go home to die. Mum refuses to take me home. I am furious, I am not wanted. My sister is doing the HSC; Mum does not want me at home upsetting my sister.
Mum tells the hospital she is not letting them send me home to die, I must be tube fed until I eat.  This is 1998, and I am 25 years old. I am angry with my Mum, how could she do this to me? I tell her I will never forgive her. Mum becomes the villain. But eventually I do gain weight and am sent home at a higher weight…. But not for long. I immediately start dropping.  Mum tries to interfere. World War Three begins, eventually she gives up and I lose 20kgs.  She washes her hands of me; she has done everything in her power. I am responsible for my own recovery…and so begins a 10 year battle trying to manage on my own, not letting on anything. Things get bad but I don’t let on. My parents are too stressed, they make things worse when they are stressed; they don’t know how to help.

At 36, told: ‘You’re too old to get better’
Eventually, at age 36, December 2009, I decide to enter treatment. I am ready to get better. But I am shocked to find that eating disorder specialists refuse to treat me. They had attempted 12 years ago, I did not get better then, I am too old and I would never get better. But I am going to prove them wrong. I am trying to get better on my own, but it is hard when a person is responsible for their own treatment and recovery. I wish I had more support. (At this stage a Maudsley Model treatment – which I learnt about for the first time in 2011 – would have been helpful). I am ready to get better so having the family helping in preparing meals, and making sure I ate them, would be helpful, but it needs to be done at my level. I am scared and I can’t be pushed too far, too fast.

Had the Maudsley Model been applied earlier in the treatment process when I was totally resistant to treatment, I don’t know how effective it would have been. It would have been hugely stressful to the family unit. Meal times were stressful enough as it was. At least when I was in hospital it was the nurses who were the villains, not my parents – it would have been helpful if we were encouraged to have family interaction at this point when I was in hospital – but no, I was banned from seeing and talking to my parents.
Caregiver role alters family dynamics
When the parents are the sole caregiver, responsible for the eating and well-being of the child, monitoring their exercise and monitoring their weight, the family dynamics change. Siblings become resentful of the child causing problems, “all she needs to do is eat and stop making everyone angry, it is her fault, she could eat if she tried”.  The stress for the caregiver is enormous; they are responsible for saving the life of the child. The caregiver is at risk of caregiver burnout, which will have a negative impact on everyone in the family.
Caregivers can play an important role in the rehabilitation of the child, especially when the child is ready to get better. But putting too much responsibility on the parents is a concern that I have with the Maudsley Model.  Parents need to be provided with support and education. Siblings need education about what is happening. Parents and siblings need time away from the patient. They all need respite, from the constant battle at meal times. They need time out for themselves and to be a family unit without the eating disorder.  It is important that time is created to engage in positive activities that involve the whole family.

I have seen eating disorders pull families apart; siblings may never forgive the child with the eating disorder. These barriers can last a life time, they may never be repaired. Having the right intervention and support at the time of intervention is important. The family needs to be supported to help and promote recovery, without the sole responsibility and burden of implementing intervention on their own.
* (Tomorrow, ‘K’s inspirational mother shares her story).