Responsible parties in room 5717

My grandmother has had a minor stroke. At 93, it isn't shocking, but for this particular woman it is always jarring to see her at rest.

Instead of the grim end-of-story scene we all feared (my mother rushed back from a trip to Beijing, an uncle in Texas risked losing a job to get here, another uncle's whole family came overnight in a fogstorm, and I caught a red-eye and came straight from the airport) ... Mrs. C is holding court from her hospital bed, children and grandchildren and grandcousins and medical staff in her thrall. I am permanently bent from curling up to sleep at the foot of the bed, because doing that at the age of 47 is another thing entirely than at ten. Grandmother is doing fine, and it is family reunion time in room 5717.

Now, you can expect ME to find some way to relate this whole experience to my eating disorder interest, right?

I've spent three days shaking the hands of countless hospital staff and doctors and specialists. (Grandmother asks each one their names, and remembers them from then on. She waves at each person passing by as if we are all colleagues in passing, and they are growing used to greeting her in kind) I'm just a random relative, but I notice that most people encountering Grandmother are perfectly happy to treat me as an authority on her medical details. They show and tell all sorts of intimate details, trust me on history and medicines, and let me sign her paperwork on the strength of "I'm her granddaughter."

The reason this interests me this week is because before this mad tear out of town (thanks to my husband and friends for juggling everything to make this happen), I was working with our Advisors and Parent Council on a FEAST policy statement on limits on parent visits and information sharing during hospitalization for eating disorder.

The contrast is stark: Why DON'T family members of eating disorder patients get as much communication, consideration, and a little pullout couch by the bed as I've had these past few days? Why is my grandmother treated as part of a community of caring relatives, and her cast of characters trusted with information and respect - when the norm with eating disorder hospitalization is separation and layers of information-protection.

That is my dream: that eating disorder patients be treated with the tenderness and professionalism and respect they need and deserve, and as an unremovable part of whatever motley crowd of relatives they may have. That parents not struggle to be included, informed, and considered the most responsible parties in a patient's life.


  1. I am so glad that your amazing grandmother is doing so well and that the staff are treating both her and you with the respect you deserve.
    As for eating disorders providers and their treatment of caregivers - I'm not sure that they are any worse than any for any other illnesses considered to be "psychiatric" rather than physical. Perhaps a lesson in anatomy is what is needed in order to put the brain back into the body and allow psychiatrists to be as sensible and sensitive as stroke experts when it comes to respecting the whole family.

  2. Absolutely, Marcella, amen.

    For some reason, when the problem is physical in the sense that it's any other organ of the body than the brain, we are much more likely to go for help quickly and our families are much more likely to be kept in the loop.

    When the brain is involved, and I mean any kind of mental illness, we are more likely to be in denial (true of depression and many personality disorders as well) and not seek help. We don't recognize that 'something is wrong' , we blame ourselves or the blame is put on others. Wrongly for the most part. I was appalled that my 14 year old was given total control over EVERYTHING (but food) while inpatient. This included the decision about whether to take medicine, how much to take, when or if to see us (she was allowed to lock herself in her room in the hospital after we flew 1000 miles to see her and she decided she didn't want to see us). How devastating for us and how wrong to give that much power to a young adolescent. How not supportive of us as parents or family at all.

    We were not allowed to speak directly to her doctor, but only through her family therapist. I still, still can't get over it 5 years later. I TRUSTED them. My trust was destroyed. And I work in mental health by profession. Go figure.

  3. I think your points about EDs apply to mental illness in general--if a person is hospitalized b/c he or she is suicidal, family's not exactly invited in either. Psych patients & their families aren't accorded nearly the same level of respect or consideration as patients with "physical" illnesses. I think it would be viewed as pretty odd if a parent asked to stay in the hospital overnight with a kid having a psych emergency. Which it shouldn't be. At all. But psych wards/hospitals aren't set up to accommodate that kind of care and contact, and it tends to be thought of as an "unhealthy" sign of "enmeshment." It's even worse the way seeing family seems to be so often used as a carrot to get the patient to "comply." (Or a stick, by threatening to deny family contact over "noncompliance.")

    Sick people need their families, their support systems, regardless of the nature of the illness. I'm sure the differential treatment of psych patients has somehow to do with stigma or outdated ideas about mental illness or some other such BS, but right now I'm too tired to come up with a theory. I can only say that the whole thing is...messed up. (Substitute a stronger word for "messed" and it'll give you a better idea of my thoughts. ;-)) It really shouldn't be this way...

  4. So how can we get this changed? I consider it cruel and unusual punishment unless there is obvious signs of physical or emotional abuse. If there is not, which in most case I believe to be the case, then I think there is a strong support role to be played by families. In all cases, but ESPECIALLY when the person is a child or teen.

    I think the status quo really, really needs challenging on this one, big time.

  5. Amazing how an illness can summon a family to the bedside. I reflect on the week prior to my mother suffering a stroke. One week of fun with all the family and grandkids before that fatal 4th stroke. What a blessing.
    How we were treated as a family, in the public hospital health system was mixed depending on the rostered nurse. Some were officious whilst others accommodating. It wasn't until we chose palliative care that we were given all rights and help because we were taking responsibility for the patient.

    In general hospital staff are accomodating, realising the vital role families can provide in caring for the patient.
    But with mental health there's a withdraw of those privalages and I can only assume it comes from antiquated attitudes and beliefs.

    Dealing with the mental changes a person experiences after a stroke can be challenging, like learning to communicate in another language.

    So what does that say about the mental changes a person experiences with an eating disorder, far more challenging with hospital staff feeling overworked on top of having to deal with the ed behaviors.

    Understanding the neuroscience behind the illness, stroke, eating disorder or whatever, means learning a new language - how do we communicate, what are the patients capabilities and our expectations, what associated behaviors are we likely to experience and how can families be better utilised as part of the treatment team. Certainly not by excluding.
    I think change is happening albeit slowly. It requires a different shift in thinking, understanding the illness with all stake holders working collaboratively.

  6. Your grandma is one very fortunate lady to have such a wonderful group by her side. Perhaps we need to learn how to gather in herds to help our kids, curl up on their beds, and treat this disease like it involves everyone affected by it, which is does....then they'll know we mean business! You've got a special family Laura. I smiled just picturing the curled up woman at the foot of a bed!
    Seems like after years of being cast aside by medicine we may have to reclaim our place.

  7. Sorry to hear the news about your grandmother, but I'm glad to hear that she's doing well and recovering.

    I was an adult when my ED developed and I made it a point to shut out my family during this time, so I can't share any experiences from a family perspective. But I do remember being talked down to and patronized as an adult, professional woman seeking help for her eating disorder, and it only served to distance me from getting the help that I needed. I think many professionals forget that having a mental illness does not also mean that one is mentally retarded. People who have an eating disorder are deluded by their illness, sure, but many (like me) are also highly cognizant of their disorder and realize that their behaviors are dangerous and not normal. For me, it wasn't an inability to recognize my disorder, it was more an inability to change my behaviors. Age is a factor in treatment, of course, but I much prefer to be an active participant in my own recovery and not be treated like a passive and child-like onlooker.

  8. I think the reason for this is that giving out information about a person's mental health can be a serious invasion of their privacy. For example, if they make a breakthrough in therapy, their family may want to know about it, but it may be related to something very deeply personal to the patient, and handing out the details of their status could completely violate the patient's trust and confidentiality. This is why confidentiality is so important in mental health care.


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