5 Days in the Emergency Room

This is a guest blog entry from a mother of a young man who struggles with mental illness and is currently hospitalized. Her willingness to share her story and what she has learned so that the rest of us can learn from her experience is greatly appreciated.

We have five kids and, as a result, have had the usual variety of ER visits—the broken bone, the dislocated kneecap, pneumonia, and asthma not responding to medication. Usually, our experiences have been uneventful. There’s the normal paperwork, the waiting, the wondering about the germs you might be getting, and the busy/inattentive/or amazing staff. It’s all part of parenting, and is added to the “war” stories shared with other moms as you gather at the park to chat.

But none of those experiences prepared us for the realities of an ER visit with my son dealing with a mental health crisis. Those are completely different.

In the 13 years since our son was diagnosed with schizophrenia, we have sat with him in a variety of ER’s for a variety of reasons, all related to his illness. Although these visits usually only lasted 4-10 hours each, we recently spent a numbing 5 days in an ER with our son who was very ill as they struggled to find a bed for him.

Hopefully, that never happens to you. But just in case, here are my suggestions to help you manage an ER visit related to a mental health crisis.

Before you need to go to the ER:

1. Find out what resources are available for crisis stabilization besides the ER. Our local community mental health provider has a crisis worker and a small in-patient unit to provide short-term support. When possible, our son is evaluated there first to see if placement would be appropriate.

2. Call the Director of Nursing at ER’s in the area and determine if any have specially designed services for mental health crises. This could be simply a room designed to be more calming and appropriate than a typical ER room, or a complete area with specially trained staff to manage mental health issues.

3. If possible, discuss with your family member (when they are not in crisis) the situations when an ER visit might be needed. This can be a hard conversation but, if you have some clear benchmarks, you may feel less “guilty” when you must make the decision to head to an ER with your family member.

4. There may be times that you need help getting your family member to the ER safely. As with understanding services that ER’s provide in advance, building a relationship with your local law enforcement ahead of time could be very beneficial. Call your local law enforcement and ask if you can visit the department, or have some officers visit you in your home so that they know you and your loved one’s situation. When a crisis happens, and you feel that you need EMS or local law enforcement to help, call 911, explain the situation, and ask for a CIT trained officer. (CIT training is specifically to help police officers to deal with individuals in mental health crisis.) Some community health centers also have teams which can come to provide intervention and transportation if needed.

5. Our son is often without his wallet when he is struggling. If possible, even if your family member might be living away from home, try to keep a current copy of their insurance card, copy of ID, and their medication list (or how to obtain it at any time day or night.)

6. If your family member is an adult, consider getting a medical power of attorney so that medical staff will keep you informed of what is going on during the ER visit. Check laws in your specific state for what is possible.

While You’re in the Emergency Department:

1. Bring the paperwork that you have to facilitate that part of the process.

2. The key issues that an ER wants to assess are whether or not your loved one is a danger to himself or to others. Of course, dealing with psychotic disorders is a lot more complicated than those two questions. Often, as parents, we are aware when voices or delusions are ramping up and we are seeking help before they become suicidal or aggressive. It is important to clearly explain your concerns to staff.

3. Sometimes, it will further agitate our son if we are describing his symptoms in front of him. In that situation, we ask to talk to staff outside the room. Sometimes staff will refuse because he is an adult. However, know that staff can listen to your concerns outside your family member’s room. They may not be able to comment to you without the written permission, but they can listen. Remind them of that if needed.

4. If medical staff is discounting your concerns because your family member is holding it together in front of them, ask for a crisis worker to evaluate them.

5. Be prepared to wait. In our experiences, crisis workers are often very busy, and it takes a while to see them and then longer for them to offer their alternatives or solutions.

6. Bring water. Ask for food for you and your family member if you are there during a mealtime. ER staff have access to food and drink any time day or night.

7. ER’s are designed for emergency care. They are quick to offer medications to calm (sedate) patients who are in need of immediate intervention for crisis, but they don’t generally give regular medication your family member may take. This is one of those moments where you may need to advocate for your loved one to get the medications they are used to so that things don’t get worse.

8. It can be very intense to wait in a room with a very anxious, psychotic person who is pacing the small room back and forth. If you need a break, step out of the room. Ask for a staff member to stay with your family member if they shouldn’t be left alone. I have sat out in the hall reading a book for a quick break at times. Take care of yourself.

9. It is imperative to verbalize what you think your family member needs. For example, “My son hasn’t slept for 3 days and we have tried these things without success. Tonight, he was pacing around the house and started going outside and yelling at the neighbors. He needs help to fall asleep tonight and then we can take him home.” Or “He is becoming very restless and agitated. He is yelling at us and expressing increasing paranoia. We have talked to his psychiatrist who advises that he needs to be hospitalized as it seems like the medication he is on is no longer working.”

In each case, you explain the situation and the outcome you feel your family member may need. You know your loved one best. Don’t be afraid to advocate.

The first time we made an ER visit, we loaded our 18-year-old son into the car and headed to an ER 45 minutes from our house to seek help for his growing paranoia and high anxiety. We did not tell him where we were going or why. That visit led to a hospital stay at a suitable hospital and eventually led to his diagnosis of schizophrenia. Fortunately, he had some insight at that time and after he was home, we were able to have a long talk about the purposes of hospital and ER visits in the management of his illness. We were able to identify key things which might require an ER visit, and made an agreement with him that we would never “trick” him into the hospital again.

As part of that agreement, we stressed that we are on the same team and we are all working together to fight schizophrenia. In the years since then, he has usually taken the lead to call for crisis help or go to the ER when the voices, lack of sleep, or other key symptoms occur. I really am not sure how he does it amid being so ill, but he usually senses when he needs more help. We are lucky.

However, we also have called the police when we were concerned and needed support getting him to seek more help. That was part of the plan we made years ago.

How to survive a 5-day ER stay…..still too early for me to even figure that out, but we did it!

Reach out to this website or to the Facebook group or to other moms who have been there.

We will offer our best support and suggestions.

We can do very hard things for our kids! You’ve got this!