This is a section from Chapter 11 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’
How do you get your spouse, your other children, your family, to function well as a team? What about the outside world, with money and work concerns, and people who don’t understand this illness?
The logistics: how can you care for your child and attend to your other commitments?
Caring for a child with an eating disorder often requires big changes in the parents’ lives. This is easier for some of us than for others. Some parents are looking after their children singlehandedly. Some have acrimonious relationships with an ex. Some have other children or elderly parents who need a lot of care. Some are going through treatment for cancer. Even in conditions that look ideal (plenty of support, financial ease etc.), caring for an ill child turns your life inside out, and every parent needs recognition for their heroic work.
For some of us the illness hits so suddenly that all we have in place is emergency measures. We take temporary leave of absence from work, and worry that our employers will run out of patience. We stop activities that used to sustain us, and we stop going to the dentist. But as the saying goes, this is a marathon, not a sprint. How can you reorganise your life so it works for you?
I would like to help you step into a place of choice and personal power. Notice that your frustrations correspond to a desire to attend to what really matters to you. Acknowledge the tensions and give yourself compassion. Remember the acceptance that comes from ‘shit happens’? Look at the cards that are in your hand right now. Many of them are horrible, so it’s utterly understandable that you should be suffering. What can you do with your cards? And is there any way you can buy, borrow or steal some better ones?
If you look at your own situation, you may be able to let go of perfection. You may let go of any of the ‘shoulds’ you’ve read in this book. Being with your child 24/7 to check that she eats and abstains from bingeing or purging may not be for you. You may notice that the crisis has passed, and that you can now be reasonably sure that you can leave your child at home and that she will not self-harm, or binge or purge, and that she will eat what you’ve agreed she would eat.
I’m going to throw some random ideas at you to see if any help you with logistics. They come from parents who are married, single, divorced, full-time workers, freelancers, and whose young or older children are at various stages of the recovery journey. Some of the ideas may be completely inappropriate for your child’s needs at present, but may nevertheless give you hope for a later stage.
- Both parents take a few weeks off work to attend to the early refeeding stage.
- One parent takes compassionate sick leave for an indefinite time period. The employer is sympathetic.
- One parent gets signed off work by their doctor for stress or depression.
- One or both parents change their work from full-time to part-time, or change to shift work so that there is always someone at home.
- The child goes into hospital for inpatient treatment or into a day-care centre.
- Parents lobby for their child to be moved from a distant hospital to a closer one. (In the UK, if you know of an excellent private treatment facility, your doctor may be able to arrange access to it free of charge.)
- One parent resigns from their job.
- Grandparents or friends are roped in on a regular basis.
- A trusted agency home carer regularly turns up for lunchtimes while parents work. I don’t know anyone who does this, but it works with elderly people, and if your child only needs a light level of support, why not?
- The school supervises daytime meals.
- Parents resume work full-time and support meals by phone or Skype.
- Parents lay out the lunchtime meal before they go to work, and their child is likely to eat this at home without supervision.
- The child spends some time at their parent’s work.
- Parents organise regular paid help or make friendly arrangements with other parents, so that their other children get support with homework and taxiing to various activities.
- This is a great time to tell your other kids that their wish to abandon competition highland dancing is granted.
- Parents put a stop to therapy sessions that are not helpful.
- Parents require more therapy consultations to take place by phone or Skype, reducing driving time.
- Parents take turns to hold the fort at home while their partner does something for their own well-being.
- Parents delegate more. They get a cleaner, a gardener, a dog walker, an agency carer. If they are the main carer of an elderly parent with, say, dementia, this is a time to get state or private support.
- Parents put locks on cupboards and on the fridge, or lock away knives, so that if they need to leave their child alone they minimise the risk of bingeing or self-harming.
- Parents move their bed or their child’s bed so that they can keep their child safe at night and still get some sleep.
- Parents find out what financial help is on offer from authorities (medical, social work) or charities. Transport to and from medical appointments may be funded, for instance. Social work services may pay for agency carers or may give you funds for you to use as you see best (e.g. housework, taxis, or private carers of your choice).
- Parents who cannot easily leave the house get regular emotional support by phone or internet. They use helplines, parents’ forums or Facebook groups, or build a relationship with a couple of trusted friends or a counsellor.
- Parents let go of the crazy notion of self-sufficiency. They ask for exactly the help they wish for and trust that others get pleasure from helping.
I’d like to acknowledge that caring for an ill child on your own is a massive task. You may long for practical help, and you may long for someone to unload onto at the end of a day – someone who can empathise with you. To me, these are absolutely essential to anyone’s well-being. I hope that some of the suggestions in the previous section help you to work out how to undertake this journey in good company.
Your spouse or partner
It takes a huge amount of teamwork to help someone recover from an eating disorder. Every day, your child goes through a massive internal struggle to get food in his mouth or stop bingeing or purging. Any disagreement or inconsistency between carers opens up the most irresistible escape route and slows down progress. Or, as some like to put it, an eating disorder likes to triangulate – to divide and rule.
Maybe you’re in a loving relationship or maybe you signed your divorce papers five years ago. Either way, it’s going to take some care to be on the same page.
Teamwork is precious
“Since I became more than just a father on the fringes and became actively involved, we have been able to support the journey to recovery for D and the whole family.”
My husband and I are close and we trust each other. Even so, in the early days there were times when all my self-confidence drained out of me because he disagreed with the amount of food I put on our child’s plate. Or he disagreed with how I had talked to her. I saw myself as I (wrongly) imagined he saw me: incompetent, over-zealous, messing everything up. The rejection I experienced from my daughter further eroded my self-confidence. Once therapists gave us a road map, things got a lot easier, but still there were dozens of small decisions to be made every day. When we could, we made them jointly. Sometimes there was no time to consult each other, but we made time for discussion later.
After a long day of caring for our daughter on my own, I was surprised to notice that I had no urge to tell my husband about my day. I wanted to distract myself or catch up with some work. Yet he felt a need to catch up, and it was useful to relate various events so that our child couldn’t say, ‘But Mum doesn’t put butter on my toast.’
Who’s the weakest link?
Being a team doesn’t mean you do equal amounts of the same things, that you are clones of each other. Caring for our children involves different skills and mindsets. At times, some of us are good at the day-to-day care, while some of us are movers and shakers, fighting to get the support we need from organisations.
A dad wrote:
“In the early days I was not that involved, and my wife did most of the ED stuff. It was not until the big relapse that I got to take a big role. In fact I kinda took the lead and found really good treatment. Now we are down the journey to recovery, the mum–daughter thing has become the day-to-day stuff, and I am more in the background, there to help whenever the need arises and also to be first response every now and then.”
Sometimes it makes sense to take on different roles because one is the main breadwinner, or because our children offer extra resistance to one parent in particular – often (but not always) the one who has the main, day-to-day caring role.
My husband and I had interesting fluctuations in the roles we took on. In the early days I admired his patience at mealtimes. When he was home, he did the mealtime support while I eavesdropped, trying to learn from him.
About nine months into our daughter’s illness, I got terribly low, and whenever he was home it was a relief to have him handle meals, while I cried in my room and tortured myself with thoughts of my inadequacies. I really needed to hear from him that I was a valid partner in my own way. I find it interesting to note that however useless I told myself I was, I could take over and do a fine job if my husband showed the slightest sign of running out of steam.
Some meals can be exhausting to see through on one’s own, and it was wonderful when we could give each other a silent signal that one of us was ready to take over to give the other a break.
As you’re busy reading this book and looking for answers, I wonder if you’re in a similar place I was in when I was hiding away in my room, crying, reading and learning. This was a time when I seemed fragile and weak, when I hung on to shreds of dignity behind dark glasses, when I felt ashamed that I could know so much yet do so very little. I now think of this as my chrysalis stage. I was learning the principles and skills that later helped us turn our daughter around. I became strong. I became the one who took the lead and drove changes.
I sometimes come across a parent who, in spite of being in a relationship, has taken on the sole responsibility for feeding and supporting their child. This can start in the early days of refeeding, when the child finds it easier to eat with a particular parent. It might make sense to go with the child’s wishes when every mouthful counts, but if you allow this to become the norm, the other parent becomes increasingly de-skilled and excluded, and this can lead to hopelessness, depression or anxiety. Everyone pays the price. The child is no closer to moving towards normal family meals and the main carer never gets a break. They say, ‘My husband is so vulnerable. If he was to get involved he would break,’ or ‘He loses his temper and just makes things worse.’
At times I have turned down my husband’s help because I needed to ‘feel the fear and do it anyway’. The best way of dealing with my suffering was to experience some measure of success. I know of other families where circumstances have forced the ‘useless’ partner to step in, revealing how competent he or she is.
Having said all that, this may not be an issue in your family at all. There are parents who only occasionally serve meals, but they take care of the other children and that works for everyone.
If you’re getting help from this book, you may be very keen to get your partner to read it too. And you may be disappointed if he or she doesn’t engage. To me, our differences are what make good teamwork.
“My husband and I agreed not to disagree with each other in front of D and that he would support me in the plan. When he disagreed with me, I asked him to read the materials that I was reading and from which I was drawing my conclusions. He thanked me but decided to agree with me on whatever. He just couldn’t deal with it. But he was WONDERFUL. He shopped, cleaned, took care of our young son, entertained D when she was distressed etc, while I researched, planned and fed our daughter.”
In this book I give you Nonviolent Communication tools and I hope they turn out to be wonderful for you. But they can easily be misunderstood, and people can be turned off, so I recommend you don’t rush into asking your spouse to learn Nonviolent Communication. It may not at all suit him or her. In my family, nobody would have heard of it if it wasn’t for me going off to workshops.
[End of extract]
More in this chapter of the book:
- The logistics: how can you care for your child and attend to your other commitments?
- Single parents
- Your spouse or partner
- Your other children are affected
- Family and friends: how to make good use of them
- Links with other parents in the same boat
- Work and money