Note: This is a serial blog. To start at the beginning, click on Chapter 1 – The Meltdown under “Categories” and start at the bottom.
It was the end of August, 2003 and Robin was in the hospital. Unfortunately, between the time we had the conversation about covering the costs of her medical care and the time she was hospitalized, I had learned some bad news. Really bad news. I hadn’t told her yet because she had been in crisis. It made sense to tell her while she was in the hospital and safe, so she could have some time to integrate the new information and make some decisions…hopefully with her family members’ help.
The inpatient unit had a bank of phones on the wall in the hallway. From my office in the outpatient building I could call the Transitions Unit nursing station in the adjoining hospital building, give the confidentiality number assigned to the patient (which I happened to know was the medical record number I wrote on every progress note), and the staff would find Robin and connect my call to a phone in the hallway. I hated to have this conversation on the phone where she had no privacy, but my schedule was packed that day and I did not have an opportunity to get over to the hospital to see her. And, I needed her to know what I had learned as soon as possible so she could rally support from her family.
“Robin, it’s me,” I said when I heard her answer the phone. It was the day after she had entered the hospital. Her voice sounded flat and sad. “How are you doing?”
“I just talked to my brother,” she said. “He was trying to be supportive. He was telling me he’s always been concerned that working in mental health is too stressful. He agrees I should go on disability long-term and do something part-time that doesn’t involve suffering.” Yay for Bob, I thought. I actually agreed with him. But I couldn’t be the one to tell Robin I thought she should stop working in mental health. She saw it as her identity, and as her only real area of interest. I was happy to hear Bob was supportive of Robin collecting disability benefits. His support was crucial to the bad news I was about to share.
“Robin, I’m glad Bob is supportive and you are being open with him. There’s something I’ve learned that I need to tell you.” I went on to share with Robin that her previous income would not cause her to be ineligible for Medicaid (government healthcare) benefits, but the amount of money she would earn on long-term disability would result in a “spend down,” the equivalent of a monthly deductible, of around $500 per month. Also, having Medicaid benefits would disqualify her from receiving free medications through the drug company patient assistance programs, which were available to people whose incomes were low enough and who had no insurance benefits of any kind.
Robin, distressed by being back in the hospital and unable to concentrate well due to mixed bipolar symptoms, was confused by my explanation. I boiled it down for her. “What I’m saying, unfortunately, is that giving up your insurance would make it impossible to cover the costs of your medications. You’d have to cover $500 of the costs every month, and then have Medicaid cover the rest. You’d still get the 95% discount for your services at the agency, and I’m sure Dr. Greene would provide some samples, but that won’t work as a long term solution. I’m not sure you can keep your apartment.”
When Dr. Greene admitted Robin to the hospital he had immediately lowered her Celexa dose, as he had agreed with my assumption that increasing it and adding Trazodone for sleep had triggered a mixed episode. The other change he made to her medications was to stop Geodon, the antipsychotic Robin had been taking since her first hospitalization in January. He replaced it with Abilify and prescribed Ambien for sleep rather than Trazodone. Ambien was specifically a sleeping medication, not an antidepressant like Trazodone, and was not likely to exacerbate mania.
I had learned about Abilify, a new antipsychotic medication in 2003, at the psychopharmacology conference I attended in January, immediately after Robin’s first hospitalization. I didn’t know specifically why Dr. Greene chose to make this change, but I remembered the presenter at the conference saying it was a brand new type of antipsychotic medication, unlike anything else that had ever been on the market.
The problem was, Abilify (or Geodon) and the other medications Robin was taking regularly (Celexa, Wellbutrin, and Depakote) were very expensive. Without insurance they would cost hundreds and hundreds of dollars per month. There was no way Robin would be able to afford to pay for them without insurance.
I threw out the only other option I could think of, one which could potentially allow her to continue to live in her apartment. It was not a good option, but a possibility.
“Robin, I don’t think it’s a good idea but the other option is to go without insurance. You’d qualify for free medications from the drug companies and for the 95% discount from the agency. Obviously there would still be some medical costs, but they’d be minimal as long as you only need treatment for mental health issues. If you had a car accident, or an injury or physical illness, you’d be uncovered. I’m concerned living on the edge to this extent would be really stressful.”
Robin was silent on the other end of the phone. This was a lot of information to take in. I didn’t want to say what I said next, because I figured it was the last thing she wanted to hear. But I had to say it. Out of all of the options, in my opinion, it really was the best one. Robin needed her family. They needed to feel more involved in her life. Hell, I needed them to be more involved in her life. I was still feeling the effects of continuing to be the only person she felt comfortable letting in. I was sure they’d all be willing to help, if Robin would let them. But, I didn’t know if she could sustain yet another huge loss, without becoming even more suicidal.
I tentatively asked my question. “Do you think living with your brother or your parents would be an option?”
I expected her to instantly react badly to the idea of losing her independence. I figured she might be upset with me for even bringing it up. I had known her a long time and knew how important it was for her to support herself. After living with roommates for many years, Robin had been very proud to be able to have her own apartment and take care of herself financially. I never could have imagined her response.
“I wouldn’t be able to keep Epiphany,” Robin said simply.
Wow, okay. That had never occurred to me. Robin went on to explain that her parents’ dog was “high strung” and would not likely get along with a cat, and her brother’s wife was allergic. Damn, I thought. I knew Epiphany had to be part of the package. Epiphany had been keeping Robin alive. It was terrible, in my mind, that she could not accompany Robin to live with her family.
I knew it was time for me to step out of the driver’s seat somewhat. Robin, overall, was much better. Her mixed episode, which happened for very explainable reasons, was being treated and she was already improving after being in the hospital one night. I assumed this was because her family members were rallied, aware of her financial dilemma, and being supportive. Robin was still anxious and not sleeping well, but she said her mood was a bit better and her suicidal thoughts had dramatically decreased. It was finally time for both me and Robin to let her family help.
“Why don’t you talk to your family members about the situation and all the options?” I said. “Tell them they can call me if they have any questions or concerns. I’ll stop in and see you tomorrow.” She reluctantly agreed.
The next day, I was shocked by the changes. “I saw Dr. Greene this morning,” she said. “He’s discharging me today.”
What? I knew I needed to step out of the driver’s seat somewhat in terms of Robin’s care, but I did not expect this. I had no idea whether she was stable enough to leave the hospital. If Dr. Greene had told her he would send her home, without calling me first as he usually did, Robin must have been very convincing!
“I feel more stable and ready to go home,” Robin said. “My parents and Bob and I all talked about what to do. They want to help me keep my insurance, and my apartment. Bob is going to pay me to help with the kids and do other stuff around their house. If it doesn’t work out, we talked about me moving in with him if I need to.”
Really? Wow, this was great. I couldn’t have been more relieved to hear the news. But, we were approaching the Labor Day holiday weekend. Robin and I had decreased the frequency of our contact, partly because she was doing better overall and partly because she didn’t want to become too dependent on me. I knew she wouldn’t want to talk during the three day weekend. I wanted to make sure she was actually safe to go home, and not just minimizing her symptoms with Dr. Greene because she wanted to get out of the hospital.
“Are you concerned that getting out of the hospital will cause your brain to shift back to thinking about suicide?” She had been experiencing a mixed bipolar episode, and she’d only been in the hospital two days!
“I’m feeling better,” she said. “I’m hoping this was a wakeup call for me.” She said she was still having significant trouble sleeping, typical for her during a mixed episode, but she was hoping once she got home this would improve. She always had trouble sleeping when she was not in her own apartment and bed. We had one night for her to test her theory before the holiday weekend. Robin was discharged home that day.
Shortly after she left the hospital, I received a call from her mom. “I’m just calling to see how Robin is really doing,” she said. “I was surprised that she needed to go to the hospital and then got discharged so quickly.”
No kidding…me too. Robin had given me permission to talk to her family members about anything other than her suicidal thoughts. I explained to her mom that she had been experiencing a mixed episode, and we were now completely clear that bipolar disorder was Robin’s main issue. We talked about how stressed Robin had been about the financial ramifications of losing her job and applying for disability, and that when she gets too stressed she stops sleeping and is unable to think clearly.
“Dr. Greene made medication changes that will help. But I also really think it helped that Robin feels supported by you and her dad and Bob,” I said. “You have no idea how glad I am that she is allowing you to know what’s going on, and to be involved in helping her. That is all huge progress for her.”
“But is she okay to be out of the hospital?” Robin’s mom was clearly starting to understand the potential dangerousness of the situation. Thank God. It was such a relief to me. Robin was finally letting her family in!
“I think she’s definitely better,” I said, trying to reassure Robin’s worried mom without painting an unrealistically rosy picture. “But I honestly don’t know how much of the sudden change was Robin faking it well enough to get out of the hospital. I promise I’ll be talking to her tomorrow before the holiday weekend to make sure she is sleeping. If not, I can talk to Dr. Greene about options.”
The next day, Robin and I talked by phone. “I’m feeling more stable. I’m less depressed than when I went to the hospital, but I’m still really anxious and tired. I slept last night but I kept waking up,” she said. As we talked, I learned she had not taken the Ambien Dr. Greene prescribed for sleep.
I was instantly irritated. Part of the point of us talking that day was to see if the Ambien did what she needed it to do, so I could consult with Dr. Greene about a change before the weekend if necessary. Robin did not seem to understand that we were trying to stabilize her brain chemistry, and not taking the medication as prescribed could jeopardize that. I was already frustrated that she had, without talking to me, gotten Dr. Greene to discharge her right before a holiday weekend.
Robin had, at some point after she started feeling better, rigidly decided talking on weekends was no longer necessary. This was fine, and preferable for me, except when I knew she was still not stabilized following a mixed episode. Despite letting her family in, I knew she would never call them if she was feeling unstable, suicidal or having urges to be self-destructive. I knew she had little control over her rigid, unstable brain. But she was putting me in a difficult position as she had countless times the previous seven months. My patience was beginning to wear thin.
Trying my best to hide my irritation, I told Robin to take the Ambien. She agreed, and we talked about what she would do to stay busy over the weekend. She promised not to kill herself, or drink. This was hard for me to trust when I knew she was not yet stabilized.
As I drove home from my office that evening I reminded myself, for what felt like the millionth time, that I had done everything I could possibly do. If Robin chose to die, I could not stop her.