Nell Casey, editor of Unholy Ghost, was only 16 years old when her sister Maud was diagnosed with bipolar disorder. Eleven years later, Maud stopped taking her medication and, after a brief hospitalization for mania, fell into a four-month depressive episode.
For this period of time, Nell and her mother became Maud’s primary caregivers. Nell threw her energy into responding to hospital crises, taking care of Maud’s job and apartment, and helping Maud through the trials of finding the medications that worked for her. Eventually Maud recovered. Even after Maud stabilized, however, Nell experienced an aftermath of anxiety, extreme hypochondria, weight loss, and headaches for several months. Nell describes the difficulties and emotions of caregiving, along with the incredible triumph of her sister’s recovery.
What was your sister’s experience with bipolar disorder?
The first time Maud experienced depression, she was 18 years old and in her first year of college. She ended up in the nurse’s office after someone on her dorm floor called to say she wasn’t coming out of her room. She was delusional and had lost touch with reality. My parents had to bring her home and she was hospitalized for about a month. My parents were really involved, although I did visit her in the hospital. I was only 16 years old, so it all seemed incredibly foreign to me. Maud responded quickly to lithium. She regained her composure and became very driven to get back to college. She only ended up taking a semester off from college. It seemed to be a very quick recovery.
When Maud was 29, she went off lithium under the supervision of her therapist, but without telling anyone in the family. She felt that the medication was a decision that my parents had made for her. I saw Maud before I knew she went off the medication and she seemed agitated. Finally, Maud signed herself into the hospital, and then called the family. That was when we found out she had gone off the medication.
Initially Maud was in control enough to realize that she had to go into a hospital and get on medication. But, then the mania got worse and she was in the hospital for six weeks.
When Maud was able to get out of the hospital, she moved back with my mother to Illinois for about month. Then, just as she was incredibly driven to get back to school the first time, she was driven to get back to New York. She wanted to get back to her life.
When she came back to New York, she still seemed really frail and I was uncertain as to how well she was doing. She was living alone in her apartment. Then, she slipped into a very deep depression that no one had predicted. She had a four to five month period of depression. So the whole episode was about six months, but even after that it was such a long process to pull everything back together.
Incredibly, a year later, Maud had recovered. She sold her novel, and had a fully high functioning life. She had a boyfriend and a good job. In putting together the book, Unholy Ghost, I’ve realized how lucky we are. Maud found medications that really work. We are so happy that Maud is doing so well now. She’s been very strong.
What were your sister’s mania symptoms?
She had delusions, was paranoid, and didn’t trust others. She had interesting theories that ranged from government conspiracies to religious revelations. Her delusions were so active, creative, and oddly fascinating, but heartbreaking. Her energy was so high and agitated. I wasn’t allowed to spend the night in the hospital so I had to leave her there in this horrible state. It was awful.
Which symptoms were most upsetting?
The depression was scarier than the mania, because Maud was so absent. It was as if she had exited her body. During her mania, she was outgoing in a way. But, during the depression we feared that we would not get her back. I had long conversations with her on the phone where she was crippled with doubt, pain, insecurity, and sadness. I wondered if she was going to hurt herself. I experienced this ambiguous loss of not knowing if she was going to get better and if the medication was going to work.
What was your experience with the hospital?
The doctors were trying to figure out how to ground her so the mania would not keep galloping ahead. But the people at the desk and nurses seemed bored and because of that they were provocative and tried to pick fights when we were at our lowest point. They had Maud in restraints, even though she wasn’t wild, hitting, or screaming. When the staff called me, they wouldn’t give information out even though she was an hour and a half away. I remember getting a call in which someone said ‘you have to come, something is terribly wrong with your sister. Oh wait, I have to go there’s a suicide call.’ Then, the person hung up on me. I called back and someone said that it might have been about my sister, then hung up again. As it turned out, it wasn’t Maud, but I had to race over there. I never knew what the staff was talking about. The hospital was completely disorganized and it was terrifying because of it. I was far away and trying to hold down a job.
How did you care for your sister?
I didn’t care for Maud by myself, my mother who is an unusually dedicated person, moved from Illinois to New York to be here. If my mother wasn’t here, I don’t think I would have the wherewithal to do it and sustain caring for Maud. We needed to be able to pass off the baton of care giving and take care of each other. I would have burned down to an anxious crisp without my mother. Also, Maud’s network of friends was incredible. Her friends were always going to Queens and checking in on her. And our family and relatives all came to visit.
My mom and I both felt like we could fix it and make it better. I did what was logical, but I also went into overdrive. I went to the hospital every day and arranged for other people to go in shifts.
I took care of a lot of medical insurance business. And, I talked to her employers and worked to hold onto her apartment. We wanted her to have a life to walk back into when she came out of it.
I went to the psychiatrist with her when she was still depressed to get a second opinion. She was struggling so much that she couldn’t take in everything that the doctor said so I had to be aware of the medication. Maud went through 18 different medications, some concurrently, over four to five months before she found a combination that worked. Maud didn’t have the presence of mind to know that one of her medications was actually giving her anxiety. I remember one weekend when she wasn’t sleeping, she was up at six, and she was rationalizing how she was going to get better. She made new decisions every three seconds about how she was going to get better. Finally, she mentioned that one of her medications had changed and I realized that this was a side effect. Ultimately, Maud found a combination of drugs that worked for her.
What effect did your sister’s depression have on you personally?
Because I didn’t understand how to ration my energy, I ended up with some emotional and physical complications afterward. I had terrible anxiety even when she was doing much better. My anxiety was feverish and high about everything. I had a huge amount of hypochondria. I lost a lot of weight. I thought I was dying because I couldn’t gain weight. I remember saying to people ‘I think I might be dying’ and I was clearly thinking irrationally. I had horrible headaches for months. I threw myself into care giving so wholeheartedly. It took a long time to downshift. I was still revved and people would say ‘But Maud’s better, she seems so well.’ My mother had a more realistic expectation, having gone through it the first time.
Also, Maud’s depression didn’t seem that far away from where I might go. At times Maud had me convinced that we were all suffering from mood disorders. Even in her delusions, the leap from me to her didn’t seem that far. I didn’t worry that I would suddenly develop manic depression, but I did worry about my mental health because my anxiety was so high. In trying to imagine what she was going through, it became too easy to feel my mind not being able to hold on.
What motivated you to create your book, Unholy Ghost?
Initially it was from the personal experience of dealing with Maud’s illness. The book was a home for us to express and write about Maud’s experience. Then, the book grew to include many other writers’ experiences with depression. I find the questions surrounding depression and mania so relevant and powerful. The vulnerability, loneliness, isolation, and worry are issues that everyone can understand.
What advice do you have for families?
It is really critical to have a tag team of care giving in the family. You need to understand how to ration your energy, although it’s hard to do because you don’t know how long the situation will last. You need to be supportive of each other.
Know that you are being helpful to a depressed family member even when it seems like you’re not. I was surprised to hear Maud say that it was important to have the consistent stubborn support of family there all the time. There were so many moments when I thought that I was not getting through to her.
Also, realize that there are so many aspects of getting better and one of them is that the depressed person has to decide to get better. Maud made the decision to pull her life together and leave some of her support systems. There has to be a decision by the person with depression to get better, among other factors, such as medication, therapy, and family support.