By Bronwen, Around the Dinner Table Forum Moderator
Caring for your loved one with an eating disorder is hard enough. It is common for parents to be charged with caring for their very ill loved one, offering intensive time-consuming treatment to restore nutrition and mental health support. It normally takes a toll on the family as well as their loved one. This year things got even harder, and COVID19 came along. A number of common COVID based themes have come up on the forum. How and when do you decide on inpatient treatment, and how do you manage when your loved one must be away from home at this difficult time? Given the forum is international, inpatient care means different things to different parents and families. In the US it is more likely to mean sending a loved one for medical stabilisation or residential care with a wide variety of length of stay, in the UK it is most likely going to mean a prolonged residential care stay of some months, in Australia it is more likely to mean admission for medical stabilisation over the course of some weeks. In other countries it means something else again.
The general advice that people mostly get on the forum is safety first – the safety of the family and their loved one is paramount. In this current crisis some parents have been terrified to take their critically ill child to an emergency department for fear of COVID-19. Parents need support to have the confidence to take their loved one to get the care they need, with or without the current crisis. This may mean attending an emergency department, for ongoing food refusal, low heart rate, or fainting. It is important that parents are aware of the severity of eating disorders and the attendant medical risks.
Persisting at home in the face of continued weight loss, and worsening health at home has been another problem for some families. Recognising that a higher level of care is needed is one thing, but trying to choose this, without on-site visits, and via telehealth interviews adds a further degree of difficulty. Facilities have put into place various rules limiting visiting hours, or stopping visiting altogether. In anticipation of this parents have been asking how to choose a facility that is a good fit for their child. Using the FEAST family guide Port in a storm can help parents in the US to decide what the features of good care are, however they then need to decide if they or their child are going to be able to manage with the added separation these new rules produce, and overcome their own fears and send their child (often unwillingly) for a higher level of care. Parents in the UK and Australia have reported difficulty in accessing these higher levels of care, with providers indicating that that although their loved one would normally qualify for admission, they are not offering these services at present. This of course can mean that their loved one may deteriorate even further before a bed can become available.
In an already fraught situation, it can be hard to have confidence that the right things are being done, especially when the person who has been admitted reports they are being treated poorly, or the treatment is not working. A common occurrence with eating disorders is anosognosia. Unfortunately, this can mean that those who are the most ill struggle to see that they are so, and furthermore feel that restrictive levels of treatment are inappropriate or unnecessary. Families who have made the difficult decision to send their loved one away for treatment are often met with a barrage of calls, texts or emails for their loved one to come home again. They second guess themselves and wonder if they have made the right choice. This has taken on new levels with COVID-19 where parents and caregivers can struggle to stay in touch, with limited face to face contact and little access or ability to see what is really happening.
Another issue that has arisen is that of facilities sending those with eating disorders home earlier than expected. Inpatient units have tried to minimise the number of people under their care and this has led to some people being discharged back to their family’s care sooner than expected. Outpatient support has been reduced with many treatment centres offering only video conferencing for intensive outpatient treatments or in other situations cancelling them altogether. This can lead to families needing to offer support at a much higher level after discharge from inpatient care. Parents have struggled with trying to learn new skills with minimal supports. There is also a risk that these early discharges may predispose to a recurring cycle of readmission and prolonged illness, owing to less support being available.
ATDT has come across all of these issues over the last few months, with support and direction given from those who have been there before.