A mother’s love never gives up

A mother’s love never gives up

What do you do when the hospital staff say ‘take your daughter home, we can do no more for her’? These words were said to K’s mother. She feared she would be considered responsible for her daughter’s death. Anorexia was a formidable foe. This is a story of a mother’s love, shared to highlight the need for more support for caregivers and their families:

My introduction to this deadly disease began during a routine visit to our local GP with K’s younger sister. The doctor felt she was too thin and would benefit from a visit to a dietician. I was not unduly concerned as I had always been extremely thin as a child and my husband was also extremely thin and still is.

The dietician saw K’s sister on her own and then we were called in to her office. She informed us that our daughter was suffering from anorexia and needed to be admitted to an anorexia hospital immediately. We were told our daughter was seeking attention from her father, who worked very long hours, and that she was restricting eating to get the effect she wanted. Our daughter told us afterwards she had said she knew her Dad had to work long hours and it did not worry her at all. We were shocked at the recommendation our daughter be admitted to hospital as we planned to take both children to Disneyland the following week. The dietician informed us that we should take our holiday – without K’s younger sister. We were told to have her admitted to hospital straightaway and leave her behind. We refused and said we would take her on the holiday and admit her on our return. The dietician informed us that we were negligent parents and we had to sign a statement that we had been told we were endangering her life by taking her away.

I immediately went to K’s younger sister’s school and was told that they did not feel she had anorexia and that they watched the children closely at recess and lunchtime. I also spoke to her dance teacher who said exactly the same.  We duly went on our holiday armed with Sustagen and ensured our daughter ate well on the trip. As soon as we returned she entered hospital. I was absolutely horrified when we walked in and saw the patients. Our daughter’s roommate was lying on a bed devoid of all bedclothes or any personal effects. She said she was being punished for losing weight.

Some days later I had a call late at night from the psychiatrist to say that our daughter did not have anorexia after all and, if she were her daughter, she would collect her immediately. Apparently our daughter been observed during meals when she would leave all her vegetables but help herself to dessert with lashes of cream and icecream. Of course, we rushed to bring her home.

Although K is adamant this experience was not one of the things that triggered her anorexia, we feel sure it contributed.

The next time anorexia raised its ugly head was when I went into K’s bedroom to check why she was not up. She was still asleep and I noticed a bottle of pills beside her bed. I rushed her to hospital and she was examined and the doctor advised that she could go home. I was shocked and said: “What if she tries this again?”

The doctor replied: “She says she won’t.”

That certainly was not reassuring. We suggested she be admitted into the hospital but the doctor said it was solely K’s decision. He suggested we try and get her into a ward for patients with anorexia at a hospital close by. We did this. However, as it was during the Christmas break there were very few staff on duty and the doctors were on holiday. She stayed there for a couple of weeks with no treatment whatsoever and then discharged herself. As her parents there was nothing we could do to keep her there. There was no follow up treatment at home and we were left in the wilderness trying to cope with the situation ourselves and failing badly as we had no idea what we should be doing.

K continued to lose weight, continued to overdose and have periods of fainting and vomiting up blood. She was living away from home at this stage and very hostile. She spent hours at the gym until the gym instructor informed her that she was to be banned from the gym until she gained weight. Fortunately this shocked her so much that we were able to talk her into another hospital admission. She was in the process of doing a Ph.D. and was assured that she could return when she was well.

So began a six-and-a-half month stay in hospital which, far from helping K, caused her to have post traumatic stress disorder from which she is yet to recover. While she was in hospital I was not allowed any information regarding her condition – because she was over 16 years in age.
We had a family conference with a counsellor who was interested in raking over family issues but he provided only one session and we could not get an appointment to see anyone else. We appreciate K was not an easy patient but feel sure if we had received information and worked with the hospital staff we would have had a better outcome. K did not gain weight. When she was not being punished, and was able to phone, I would spend at least an hour, morning and night, trying to motivate her to eat.  Although not a psychologist, I would feel I was helping, but by the next meal K would phone again, we would be back to square one and I would try my motivation skills yet again.

One good thing: An occasional session for parents of the girls in the ward helped us realise we were not the only ones suffering.

Tough love
Meanwhile this was an extremely difficult time for the rest of the family. K’s two younger sisters were both angry at the turmoil she was causing in our family. They felt she should get over it. K’s youngest sister was studying her final high school exams. Then, because K was not making progress, I was informed she would be discharged from the hospital. This would have coincided with the final school examinations and would have been a disaster for her sister. During one of the parents’ sessions I was so distraught I let fly and burst into tears and said I could not have her home until the exams were over. All the parents were extremely understanding and welcomed my tirade as they had also felt enormous frustration. I was told K had to start putting on weight to remain in the hospital. I then decided, as they seemed unable to get her to eat and gain weight, to do something myself and informed K that unless she put on weight I would section her and she would be fed through a tube. K could not believe I would do something as dreadful as this, but after many tears and seeing I would not back down, she said she might as well eat as she would have to put on the weight anyway.

K reached my target weight (although not the hospital’s, which was unrealistic for her) and we took her home. However, although she weighed more she was not cured at all. Once she left hospital I was her sole carer, there was no follow up and, as far as the hospital was concerned, she could have died. There was considerably more help available to mothers of babies when they returned home, than there was for me.

Every time I returned home I would go to K’s room to ensure she was still alive. This was an enormous strain on me and I often felt, if I did the wrong thing, I would be responsible for her death. There were times when I totally lost control with K and her response would be to take an overdose.

K’s hospital experience has been so bad that she has required treatment to get over her hospital treatment.

Self-help
I am happy to say that after 25 years, K is a lot better. The change came about when she decided for herself that she wanted to get better. She realised that she was slowly killing herself and was heading for organ shut down. She decided as no professional person was willing to help her, she would take control of her problems. She went back to University for a further degree – to study possible ways of getting better and the research into this has helped her enormously.
K has found a new hospital which, although not specialising in eating disorders, enables her to relax and find peace and she has found certain specialists now who are willing to help her, are impressed with her attitude, her intelligence and her long journey.
Progress is being made. I still have no input with her specialists but because K confides in me now I think I know how she is getting on. She still, however, weighs herself each morning and has eight sets of scales. She also cannot eat in public. However this last week, at long last, K was able to go out and have a coffee at a café. It doesn’t sound much but to us it is an enormous achievement.

To other parents I say: try and get whatever help you can. It is the only way you will get through this. There IS help available now and anorexia treatment is greatly improved whereas, when we were going through this, treatment was based solely on punishment. There are many people out there now who have been through this illness and want to help others – people like June Alexander, who has been a great help recently to K. I know that K wants to be able to help people when she is totally better so they do not go through the long, arduous path that she has taken.

What is your experience as a caregiver? What would make life easier for you and your family?