Creating a Safe Recovery Environment
Parenting a child with an eating disorder is not normal parenting or even normal caregiving. An eating disorder diagnosis affects every member of the family and the lifestyle of the family, just as it would with any grave illness. Creating a safe and supportive home environment for all family members during recovery is critical, but families often lack the crisis management skills and face stigma in the community when asking for help.
Although it is natural for parents to want to retain a sense of normalcy throughout recovery, families often find that it is necessary – and a relief – to make temporary changes in the home environment that prioritize treatment over work, school, socializing and other daily routines.
Some changes may become permanent as families learn new skills to manage the specific needs of their loved-one and to remain vigilant in order to head off future relapses. Parenting during treatment is often confusing and counter-intuitive; but one thing is clear, parenting the ill person and other siblings during the months of initial recovery is a true challenge.
Supporting Nutritional Rehabilitation
No matter the diagnosis, many of the tools parents need to employ during recovery do center around food. Nutritional rehabilitation requires 24/7 support or monitoring, even during outpatient treatment. Home is the ideal place for nutritional interventions as all family members need to eat, the patient does not need to travel to a clinic, meals can be planned in advance and a schedule of regular meals and snacks can be integrated into the family’s regular schedule.
Families should work with their treatment teams to establish nutritional requirements (quality & quantity), and to decide who will be accountable and in charge of food at what stages of treatment and recovery. Although it was once believed that patients of all ages should be in charge of food decisions during recovery, the recommended treatment for adolescents has evolved to one where parents and caregivers (or inpatient staff) take the lead during the early stages.
Family-Based Treatment/Maudsley puts parents in charge of what, when, and how much food the patient requires until the patient is able to reliably take this responsibility back in an age-appropriate manner. For example, young children will continue to need guidance and have parents make food decisions through early adolescence. Some families call this the “Magic Plate” approach. For older teens and young adults, it is to be expected that they will be able to take over food choices and even food preparation as they move through the recovery process.
For patients living at home, having regular family meals in which all members eat the same menu is often advised. For patients requiring inpatient stabilization and residential care, parents can learn skills and techniques for continuing the recovery process after release by attending family therapy, training sessions, and family week activities. Nutritionists and dieticians can be an excellent resource for parents in learning about dietary goals, the dynamics of the recovery process, and transitioning to normal eating.
One thing parents should remember is that some kind of nutritional support or meal supervision will be necessary at home, even with patients who have begun eating more independently in a residential setting. Changes from one level of care to another are common times for relapse, thus it is never too early to begin planning for the transition to supported eating at home.
Support for the Entire Family
As in any caregiving situation, there is also a need for parents to balance attention to other siblings, to the marriage, and to responsibilities outside the home. Every family will need to come up with their own strategy for balancing life and caregiving depending on the demands of work, school, and finances.
Some strategies that families have found helpful are listed below:
- Parents often decide to suspend any non-essential activities in the community
- Many families find that a leave of absence from work or staggered shifts are necessary to make sure a parent is at home at all times for meals and monitoring
- Siblings need and deserve appropriate support and attention during recovery. (Family-Based Maudsley approach includes the entire family, including siblings, in the treatment)
- Finding peer support can be very helpful:
- Parents often use the analogy of “if my child had cancer” to assess priorities; an eating disorder is a life-threatening emergency and deserves the same urgency and attention
- Self-care, for parents and caregivers, should be considered a priority in order to keep the necessary focus and stamina needed for full and long-term recovery. It is not a luxury but a necessity to get enough sleep, emotional support, practical help, and respite.
- Taking advantage of resources outside the eating disorder world which support caregiving, like the Caregiver Action Network.