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I can’t make him stop. I can’t make her eat. I can’t do this at home.

by Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director

 

As a parent advocate, I hear it all. Even in normal times, parents feel frightened at home with mentally ill sons and daughters. These are not normal times: families have been sent home because the dangers of going out have become a public health crisis. There is a silent crisis of really terrified parents closing the door to the world more frightened of what is inside than outside.

“When going through hell, keep going.”

I’m not going to promise rainbows and unicorns here. But I do feel optimism for families. As terrifying as it is to bring the family into close quarters during this crisis, it is also an opportunity. Families have shown extraordinary power to change the course of an eating disorder at home. Locking out the world also means locking out distractions, obligations, schedules, and appointments.

Before the current crisis, think of the main barriers to treatment:

  • Getting treatment appointments
  • Time between appointments
  • Paying for treatment
  • Travel
  • Inability to monitor behaviors
  • No time to prepare meals
  • School and work schedules
  • Tag-team parenting
  • Conflicting advice and recommendations at each appointment
  • Lack of time to research and read
  • Lack of time with other family members

All of the above are evaporating to some degree during the time a family is quarantined at home, but the main challenge for parents is still front and center and terrifying: keeping the ill person eating and safe. Eating disorders often cause the affected person to strike out at family or become secretive if the symptoms are challenged. Eating disorders feel excruciating especially when the symptoms are challenged.

“I can’t MAKE her stop.” “I can’t MAKE him eat.”

Parents are often tempted to give in to the eating disorder to make peace, to keep the patient “happy,” and to manage our own distress. In this crisis, that temptation will be even stronger: the world feels uncertain and without clinical support we can feel we “can’t” do any more than worry and watch. But here is the truth: letting an eating disorder continue unchecked isn’t peace, it grows and embeds deeper.

The good news: parents at home can very effectively do what good hospital staff do, and for the same reasons. The F.E.A.S.T. parent community is rich with strategies and ideas and peer support to help you do this.

In fact, doing this at home can be the strongest medicine you can provide. Quarantining for covid19 could be the opportunity to evict ED from your home and regain your parental authority to provide a safe, recovery-focused environment at your house. When our doors open again to the world you may have a new family stance and strengths. This is a unique opportunity for many families, and bad news for ED.

Still feel you “can’t?” I’m just one parent of many, but here is some of the advice I’ve learned and shared over the years:

  • How to look at their disorder:
    • If you’ve never seen a florid ED case before you will believe your person is different, more stubborn, or a worst-case. If you have, you won’t
    • All parents feel we are not smart, strong, brave, courageous enough. But we are. Our kids believe we are, too
    • I hear constantly from patients that they want their parents not to give in, not to fall apart, not to listen to their protests
  • How to meet their resistance:
    • It isn’t “making” them eat; it is allowing them to eat despite their fear
    • It is okay if our loved one hates us, hates what we are saying, hates the food and the time of day and the angle of the sun
    • Their distress is not necessarily our distress. They need us to remain calm and unflappable
    • Yes, most of us fake that for a while: it still works
    • Their fear can look a lot like anger: treat it like fear
    • Fear is not a discipline problem
    • You’ve done this before for your tantruming toddler. You can do it now
    • Choices and negotiations seem loving, but can make sufferers feel less confident in us
    • Resistance generally goes up to, and only as far as, when it worked in the past, so:
    • We teach our loved ones to resist, and how far. Only we can reverse that
    • Warmth for its own sake, despite the response, is parental
  • Hospital at home :
    • Learn from nurses: they do not beg, threaten, yell, or cry
    • Hospitals have routines. They are predictable and non-negotiable
    • Most eating disorder patients comply with treatment the day they go into a hospital. Without physical restraints or force. Without negotiation.
    • Making our home a safe place to comply is our job and going to be necessary at some point
  • Attitude matters:
    • A sense of humor in the face of it all is one of our greatest strengths
    • Resilence is more important than getting things right
    • Persistence is strength
    • Your approach will be unique, and uniquely successful
    • ED hates quarantine more than you do!
  • Safety First
    • Not all situations can be made safe at home
    • Work out a safety plan with your treatment providers in advance
    • Have support for yourself so you are in the best state of mind and health to be a caregiver
    • Stay outwardly calm and seek emergency help as needed

I could go on. There is so much to learn, and so many strategies to choose from. No two families in quarantine are alike, and no two eating disorder sufferers are alike. But if you’re shut in with ED, you can experiment and reframe and  try to make the experience an opportunity to heal your family together by learning from the families in the F.E.A.S.T. community and the resources we share.

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3 Comments

  1. Sarah

    I fear this post reinforces a dangerous trend in FBT – one where vital information from primary caregiver is ignored by members of treatment team because they are labeled as overwhelmed and complaining. As with many others, we had to wait months for an appointment when my daughter was referred to specialist for symptoms of AN, so I did research and started a meal plan and appointments with therapist. Those efforts slowed the weight loss, but didn’t reverse it. She was at 73% of starting weight and a malnourished zombie by the time we saw the specialist. The specialist and team proceeded to ask my daughter a few questions and dismiss everything I said, as if they’ve been trained to hear “this is difficult” from parents rather than listening and addressing concerns. Six more months and several more fruitless appointments passed as I sat at a table 8-10 hours a day feeding my daughter, who gained a few pounds while her mental state deteriorated and my mental health, physical health, and employment were seriously compromised. Her therapist reached out to clinical team to express concerns to no avail. When my daughter starting losing weight again, a family member helped me connect with an advocate who guided me through obtaining residential treatment and this changed the trajectory of her disease. The team could see the issues I had been reporting and acknowledge and address them. She’s been weight restored 6 months and her mental health is good. There is still a meal plan, I still plate her food, she still needs support while eating, she stills sees therapist and dietician weekly and is under the care of the same specialist who adjusts meds as needed (specialist became more engaged after res treatment??) but these things are managable. I am grateful for where my daughter is today and so very grateful for the family and advocate who stepped in when we were drowning and threw us a lifeline. However, I strongly feel we could have gotten here earlier if my input as primary caregiver had been treated as valid concerns rather than the rantings of an overwhelmed parent. Also, I’m sure there are many others who don’t get thrown a lifeline and continue to have their concerns ignored while their child stays ill. Please don’t give professionals permission to ignore us when we say, “we can’t”, teach them how to ask “why”.

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