Guest post by Laura Baxter. Read more of her work at Stirfrylaura.wordpress.com.
Our son was insistent: He had to fly to CERN in Switzerland, he had to announce his scientific findings at the Geneva Convention. Would we take him to the airport? My husband and I deflected the best that we could, even as Zeppy’s agitation grew. The next morning, we woke up to discover that Zeppy was gone. He had walked to town in the middle of the night – 15 miles away.
If your child has a serious mental illness, at some point you may face a crisis that is more than you can handle at home. Maybe she is talking seriously about suicide. Maybe his anger is turning to violence. Or perhaps, like Zeppy, your child is so delusional he might come to harm accidentally. At these times, medicine and therapy may not be enough.
Before starting his current medication, our son was hospitalized 5 times in 4 years. As a result, we grew increasingly better at discerning when to seek in-patient care. The first time we encountered such a crisis, our normally-quiet son was raging with emotion. We were new to the area and decided to seek help from the pastors at our local church. After listening to our son shout profanities for hours – in the church office – we received some wise advice: “You should take him to the emergency room.” It seems obvious now, but the thought that Zeppy was suffering from a medical condition never crossed our mind.
GETTING TO (AND THROUGH) THE EMERGENCY ROOM
Normally, the ER is the gatekeeper to commitment in a psych hospital. But how do you get your child to the ER, especially if he is larger than you are? We were fortunate in that Zeppy generally cooperated in going to the hospital. One time we bribed him with an ice cream sandwich; another time we pretended to take him to the airport, playing along with his delusion. At least once, Zeppy was in such distress that he asked to go to the hospital. Even so, those drives were nerve-wracking. We constantly worried that he would jump out of the moving car.
As we became more experienced, we spoke with local law enforcement about our options in the event Zeppy refused to go to the ER. This is a terrible thing to think about. Once you call 911, you have no control over the situation. And because some symptoms of mental illness appear threatening, it is possible your son or daughter will be harmed by the police. Our hope was that, by speaking with local enforcement in advance, the risk of someone getting hurt in a crisis would be reduced. Thank God, we never had to execute “Plan B” and call for back-up. Nonetheless, I am glad my husband insisted on having those hard conversations.
At the emergency room, the doctor must assess whether your child meets the legal criteria for psychiatric hospitalization. The most basic standard is “danger to self or others.” Some states also allow psychiatric commitment where the patient is “gravely disabled.” This is a nuanced conversation between doctor and patient. The doctor doesn’t want to get in legal trouble (i.e., a lawsuit for false imprisonment) if she gets it wrong. You may believe with all your heart that your child needs in-patient treatment, and you may share your reasoning with the hospital staff. Ultimately, however, the decision is up to the doctor.
EXPECT TO LOSE CONTROL
Once the ER doctor has signed off on commitment to a psych hospital, the medical staff will call around to see which facilities have open beds. The national, chronic shortage of beds in psych hospitals suddenly became personal. We had little choice in where Zeppy was sent – sometimes the facility in town, sometimes a location an hour or more away.
By this point, the ER has taken charge of your child and of the placement process. It sounds very difficult (it is), but your job is to breathe and trust that the staff will get your child to a safe place as soon as they can. Worrying and pestering the staff – always my first impulse – does not help.
If your son or daughter is over 18, you will face additional problems. Under privacy laws, hospital staff generally cannot share the medical information of adult children with their parents, at least not without the patient’s permission. Psychotic or not, by this time your child may be quite angry with you, so don’t expect immediate permission to share information. Especially when you are kept in the dark, it is easy to become frustrated and bewildered.
When it became clear Zeppy’s mental illness was not going away, we spoke to an attorney about a medical power of attorney. We were fortunate in that Zeppy was clear-minded at the time, and willing to sign the appropriate documents. The next time he was hospitalized, this gave us some leverage in getting more information from health care providers — along with the fact that he was obviously unable to care for himself.
Sadly, some doctors are dismissive of parents, with or without a medical power of attorney. To these doctors, your questions and concerns are irrelevant at best; more likely, you have somehow contributed to your child’s problem. Although you have learned much through painful trial-and-error over the course of your child’s illness, some doctors just don’t care. It doesn’t matter that your child lives with you, that you are caring for him on a day-to-day basis, or that you are the one paying for the hospitalization! You can expect such doctors to make treatment decisions unilaterally, without consulting or even informing you, based on whatever new drug is being pushed by the pharmaceutical companies. That’s just the way it is.
A HOLDING PLACE
So your child has finally been admitted to the psych hospital. As a first order of business, you may be asked to drop off several changes of clothes. Shoelaces, belts, and strings (for example, on hoodies) are not allowed. I tried to offer books, but these were generally ignored by the staff and Zeppy alike. The first time Zeppy was admitted to the psych hospital, I asked whether he could bring his clarinet – a request quickly denied, of course. (This shows my own frame of mind at the time, that I was worried about him falling behind in band!)
In my experience, psych hospitals are like an unimaginative, indoor day camp, just with doctors and medicine. Patients mill around aimlessly, and sometimes the caretakers do as well. At one hospital, we had to check the shoes to distinguish patients from staff – staff were allowed to have laces. Expect your child to be bored.
I suppose there could be some excitement if a patient acts out. However, with modern medicine, this is rare. Any patient in danger of disruption will be heavily medicated. While distressing, this may be what your child’s brain needs to heal. I had to keep reminding myself that our efforts to help Zeppy outside the hospital had been exhausted, and that this was a safe holding place for him while we regrouped.
KEEPING IN TOUCH
Communication with your child is restricted, especially since the hospital will normally confiscate all cell phones and electronics. (Many times, I was not allowed to bring my own phone into the hospital). The hospital will have scheduled phone time and visiting hours. Don’t be surprised if your child doesn’t want to talk with you. And even if your child wants to talk, don’t be surprised if the lines are tied up during phone time.
As much as I love my son, visiting was a big downer. Sometimes Zeppy didn’t want to see me, or was indifferent to my visit, which made me sad. Many times I saw no improvement in his condition, which also made me sad. The physical environment was depressing, and there was often not much to talk about (other than his delusions). I tried not to feel guilty about skipping visitation for a day or two. We wanted to remind Zeppy that we cared, but I also couldn’t spend all my time crying.
I don’t mean to sound callous, but your child’s time in the mental hospital is the perfect time for you to rest and recuperate. You probably went through great stress during the weeks leading up to hospitalization, and there will be more stress waiting for you after your child is discharged. It’s ok to feel some relief once your child has been admitted (I did). Take advantage of the fact that, for now, your child is safe and not your responsibility. Spend some quality time alone, or with your spouse, or with good friends. If possible, schedule a short getaway weekend. The change in perspective will boost your morale for the long haul (and it is a long haul).
DON’T EXPECT A BREAKTHROUGH
Most psychiatric hospitalizations are short, 7-10 days. This is because – surprise surprise – insurance generally covers that length of time. Although there may be some group or individual talk therapy available, the medical staff will focus primarily on medication.
Since your child’s current medications were not sufficient to prevent a crisis, the supervising doctor will likely change them. As an outpatient, when you change medicine, you must spend several weeks tapering the old drug down, and another several weeks tapering the new drug up. But in the hospital, under close observation, the doctors can be more aggressive.
I have found that, while 7-10 days may be enough time to make sure your child does not have a bad reaction, it is not enough time to see whether the new medicine actually works. The psych hospital will give you a break from the crisis, but don’t expect a breakthrough.
In addition, continuity of care can be a big problem when your child is in the psych hospital. Because our brains are so unique, they respond in unpredictable ways to treatment. Your child’s regular doctors can be a wealth of hard-won information on your child’s condition. Yet the attending physician at the psych hospital, who may be seeing your child for the first time, is unlikely to consult your child’s regular doctors.
Zeppy had a wonderful doctor who worked hard for several years to find the best possible drug combination. However, this doctor was not affiliated with a psych hospital. When Zeppy was hospitalized, he was under the control of a completely different doctor. Two times, the attending physician at the psych hospital abruptly changed Zeppy’s medicine to brand new drugs. Not only were these drugs insanely expensive, they did not work for Zeppy. After his release, we were forced to change his drugs again, with his regular doctor, the slow way.
Eventually, circumstances forced us to change doctors. This time, the doctor was also the attending physician at a psych hospital affiliated with his medical group. It was wonderful to have continuity of care during a crisis situation. Because this doctor knew Zeppy’s medical history, and because he had a relationship with our whole family, he was able to come up with a treatment plan that was sustainable after discharge.
RELEASE FROM THE PSYCHIATRIC HOSPITAL
After the allotted 7-10 days, the doctor will generally pronounce your child ready to go home. Your child may be somewhat calmer and quieter, as a result of the additional medication and boring hospital routine. Your child may also be on his best behavior, at least until release is certain. This does not mean he is “all better.”
It is extremely important to schedule an appointment with your child’s regular doctor as soon as possible. Your child’s regular doctor knows his history and hopefully recognizes what is “normal” for your child. He or she will be able to evaluate the medicine changes, and to make further adjustments.
Re-starting therapy with your child’s regular therapist can also be helpful. Unfortunately, we were not able to find a therapist willing to work with Zeppy in his post-hospital phase (they felt he did not have sufficient insight into his problems). This was quite frustrating — I spent a lot of time banging my head against the limits of modern psychotherapy. We did receive great benefit from a therapist willing to work with us, the parents, instead of Zeppy directly.
For us, the post-hospitalization period was almost – not quite but almost – as difficult as the pre- hospitalization period. It generally took a month or longer for Zeppy’s psychosis to fade, and for him to get used to the new drug regimen. Nonetheless, the short break of not being personally responsible for Zeppy’s well-being was helpful by itself. And the whole family, especially Zeppy, gained a renewed focus on staying away from the hospital as long as possible.