by Julie Dewey
Helen was clearly not capable of being supportive. She was uninformed and ignorant. She shunned the idea that anyone in her family could suffer from mental illness. She had heard the stories about Iona, but that’s all they were, stories. Luckily the kids went to different schools, because her boys were similar in age to Jenna and Helen didn’t want word to get around. She hated the thought of her boys being any less popular than they already were because of an awful rumor.
“Helen, I have to go.” My daughter hung up the phone, but not before Helen told her to call when Jenna was all better.
“Mom, she doesn’t have the flu, or a broken bone. Helen thinks if she has something wrong, there is an easy fix. Is everyone so ignorant?” Camille asked with tear-filled eyes.
“I sure hope not. I guess it’s just not easy for them to understand or accept. Listen, we do have to talk about school.” I said.
“I know. The principal called again. He suggested that we arrange for a tutor and see how it goes. If Jenna does well, we can finish off the year so she doesn’t fall behind.” Camille explained.
“I can move in here for a while, you know, to help. You have to work and I don’t mind, I really don’t. I can take Jenna to the library to meet her tutor and we can meet you for therapy.” I offered.
“Yes, I suppose we’ll have to work something like that out. She can’t be left alone, that’s for sure.” My daughter agreed.
Before Jenna’s well being took a turn for the worse, we had a firm schedule in place. There was however one afternoon where Jenna was alone for the space of three hours. Somehow during that time she left the house, took a bus to the mall, and wandered around alone. The mall security guard picked her up because she was acting oddly in the food court. She was irrational, and crouching in a corner, screaming that everyone in the mall was out to get her. She scratched the guard when he tried to retrieve her. He was unable to talk her down from her agitated state so he called the police.
When the police arrived Jenna was unable to give them her private information. She couldn’t recite her name or address and became increasingly volatile. She recited gibberish and sequestered herself further into the corner crouching down with her knees to her chest. She pulled a dining chair in front of her to help her stay hidden.
Luckily, a neighbor was out shopping and recognized Jenna. She called Camille and we intervened just in time. If we hadn’t arrived when we did, she would have been taken into custody. I coaxed Jenna out from her position and Camille spoke with the guard. She also talked with our neighbor and thanked her for calling, although she gave no explanation for Jenna’s odd behavior. If the neighbor thought she was on LSD that would be okay. That might be a lesser offense than having a mental illness.
My daughter, Jenna, and I went for therapy as a family and individually in an attempt to understand how to move forward given Jenna’s condition. The doctor diagnosed Jenna with schizophrenia and cautioned us that it could become more acute. After witnessing this incident I became all too aware that Jenna’s safety was at risk.
I had to be with her at all times and moved my things in to my daughter’s small three bedroom house at once. When Helen insisted on coming over for a visit, Jenna didn’t recognize her. She lashed out at her and claimed she was an intruder from above and that she was sent to kill her. Jenna grew violent and punched and kicked Helen in an effort to protect herself. She tried running from the house, but I was able to stop her. I threw myself on top of her and waived Helen to leave.
“See, she’s gone now. She won’t hurt you.”
“Okay.”
“Do you think I would let anyone hurt you? You’re my one and only granddaughter. What do you say we go bake some cookies?”
We went into the kitchen and made a double batch of triple chocolate chip cookies. Jenna measured and stirred the dry ingredients while I prepared the wet ones. We took turns mixing the batter and we scooped spoonfuls of the dough onto cookie sheets. For a fleeting moment everything seemed normal. Jenna wasn’t speaking gibberish, she looked at me when we talked, and she wasn’t behaving paranoid or neurotic. She was at peace in my presence and I felt the need to protect her at all costs. Helen would have to stay clear from our home for a while, no surprise visits from anyone would be allowed.
The day the tutor was scheduled to meet us at the library, Jenna was particularly troubled. She went back and forth between outfits, I didn’t care what she wore, I was merely grateful she showered and used soap. She wanted to please me for some reason and pleaded with me to help her decide on a shirt. When I picked a polka a dot blouse that had once been a favorite, her eyes grew dark and stormy. She rushed from her room and stormed in to the bathroom. She slammed and locked the door and refused to come out. After an hour I canceled the tutorial session and called Dr. Saul.
The doctor felt Jenna was experiencing more frequent, more acute psychotic episodes that warranted intervention. If I couldn’t coax her out of the bathroom, the doctor suggested that I call 911. I was fearful because we kept numerous prescription and over-the-counter medications in the cabinet. If Jenna was at all suicidal, all she had to do was swallow them. She was so unpredictable these days, and it wasn’t just the paranoid outbursts. She was angry one minute and serene the next, one day she was relaxed and I was able to connect with her, but the next she would act like she didn’t know me. It was frightening and I felt at a loss.
I was unable to pry Jenna from the bathroom and when Camille came home from work, she couldn’t either. In the end we called 911 and sat by silently as the team of experts unhinged the bathroom door and carried my listless granddaughter to an ambulance. Jenna had taken a variety of pills, I couldn’t conceive that she was suicidal and had to believe it was this other, more sadistic side of her that acted when she popped the tops to the cabinet’s medications and drained every last capsule.
Jenna was taken to the hospital where her stomach was pumped, then she was admitted to Hutchings Psychiatric Center at once. The weather in Syracuse was rainy and grey, like my heart. I felt tired and overwhelmed by the onslaught of events since the beginning of the school year. My once sweet and caring granddaughter had become an unrecognizable being. My daughter was in pieces and had been prescribed anti-anxiety medication to help her cope. She gained weight as a result and was always beating herself up about it.
The neighbors knew we had a situation thanks in part to the mall incident, but also because of the ambulance and squad of police cars that had stormed into our driveway last week. If they noticed that I moved in, they didn’t mention it. In fact, they tried to pretend nothing was wrong. No one really pried, they just ignored us from that point on. We were weird, had a situation, and no one wanted to be involved.
Helen, God bless her, called us numerous times in tears. Her concern for her boys grew. Word had gotten out about Jenna and she didn’t want them to suffer any teasing. Helen behaved selfishly, she really couldn’t understand the ways in which Jenna was being tormented and she didn’t try. I offered to take her to a meeting with me, but she refused. She didn’t want to be seen entering ‘one of those meetings,’ so I went alone, again.
Listening to people speak about who their loved ones used to be before the disease of mental illness took over was the most distressing. I took my pleasure in the small moments when Jenna was back. I visited with her every day at Hutchings. In those small fractured moments, I might catch Jenna’s eyes looking directly into mine with love. Sometimes she appeared confused and afraid, but more often she was in a world of her own, split off from reality.
“I have diagnosed Jenna as having schizophrenia,” Dr. Saul said to us during one of our private therapy sessions. “I’d like to try an atypical anti-psychotic medication for her called Clozapine. I believe it will help her to be emotionally expressive and motivated at the same time. Like all medications it can have side effects, in this case weight gain is the most noted.”
“Join the club,” Camille said sarcastically.
I don’t know what was harder for my daughter, seeing her child in an institution such as this one, or dealing with the outside population who didn’t understand. There was a stigma to mental illness, it was shameful to admit to it or discuss it with anyone. Helen begged us not to tell anyone what was going on, but I thought that was ridiculous. Anyone who was a real friend would understand, wouldn’t they?
Chapter Twenty-One
Release Forms
The Authorization for Release form OMH-11 was not too difficult to obtain. I contacted the office of mental health and downloaded the necessary paperwork in duplicate. Dr. Saul was required to show that we had a demonstrable need for the information in the medical file we wanted released. The information in the files was deemed confidential by the HIPAA laws as well as the New York State Hygiene Law. Once the form was filled out, witnessed, and signed by the doctor and myself, we submitted it and crossed our fingers. Not only would Iona’s file help inform of us of our family history but it would also help us with insurance. The costs to keep Jenna at Hutchings were unmanageable for us for much longer. Our insurance company noted that our costs exceeded the norm and refused to reimburse us for any care. Our only other option was to send her to a facility that was quite a distance away, and we felt that would be more traumatizing.
“Why don’t we bring her home, Camille? We can monitor her meds as closely as the staff at Hutchings.”
“I was thinking the same thing. She seems to be doing well on the current dosage, at least the staff hasn’t indicated she’s had outbursts.”
“We can discuss it at therapy today. Who knows, maybe she won’t want to come home?”
“I know, but the idea is to admit patients for a short period of time, not indefinitely. I just worry because she’s really been distant the last few visits. It makes me so sad.” Camille started crying. I held my daughter close and soothed her by rubbing her hair. I cried alongside her, spilling the tears I had been holding in for the last few weeks.
“It’s going to be all right, Camille. She is in good hands, the best. I have written for Iona’s files and we will learn more about our history. If Iona, my very own grandmother, went on to have a normal life, there is no reason to think Jenna can’t.”
“Times were much simpler then though, Mom. People are just so judgmental and I don’t know, I wish we could all just go away and live away from the prying eyes.”
“Why don’t you come to a meeting with me this week? I have found it very helpful and I think you will too,” I encouraged.
“I don’t have time, I’m thinking of picking up an extra shift at work to make ends meet.”
“Let me cash in my retirement, I’d rather do that than have you working anymore. You’ll run yourself right into the ground and we need you.”
“Mom, no, that’s your money. We’ll figure it out.”
Later when we were at our therapy appointment with Dr. Saul and Jenna, we both noted that Jenna was more composed. She said hello and gave us both warm embraces. Her hair was brushed, she smelled like she‘d had a fresh bath, and other than the sniffing and occasional glances to the ceiling she seemed normal.
“Doctor, is there a possibility we could bring Jenna back home with us?”
“She’s just settling into a nice routine here, I am not sure I want to interrupt her treatment and progress just yet.”
“Could we try it? If she doesn’t do well, we can return her. Our health insurance isn’t covering her care and we are running low on funds.”
“I see. There are other federally funded facilities you could consider if you’d like.”
“No, we would rather she came directly home so we can care for her.”
“Well, let me discuss it in private with Jenna. If she agrees we will establish some parameters. We don’t like the patients to stay too long here, often we get them on track and to a place where we feel they aren’t going to be harmful to themselves or anyone else. Jenna did attempt suicide once already so I have to be confident she is not depressed before I let her go. The medication is very effective and is doing its job, Jenna is more social now and has better control. She is also more aware of her surroundings and reality.”
“We will be in the waiting room then.”
Camille and I sat for a lengthy twenty minutes while Dr. Saul evaluated Jenna with a series of questions. When he was done, he determined she was not at risk for suicide. We were all in agreement that Jenna would come home with us at the end of the week. Dr. Saul wanted to continue to observe her for a few more days before her release.
Back home Camille and I removed anything we saw that could be a potential trigger. In Jenna’s case, mirrors acted as a trip wire for her. For some reason they made her very sad. We removed every mirror in the house, including those in the main bathrooms. The only one we kept was in Camille’s closet, it was a full length mirror, one of the cheap ten dollar ones from Target.
We replaced the mirrors with cheery photographs and inspirational quotes. We paid special attention to the items in Jenna’s bedroom, placing her favorite books on her night-stand and a diary with lock beside it as well. Journaling was a tool utilized at Hutchings so we bought a purple, leather bound, lined journal with a large cursive ‘J’ on the cover for this purpose.
When the day came to bring Jenna home, Camille and I were hopeful. Jenna was cheerful when we picked her up and seemed grateful to be back home and in familiar surroundings. She poured herself a glass of milk, plopped onto the couch and settled in with her regular programs. We hadn’t given up on a tutor just yet, but planned to wait a week or more to get Jenna comfortable before introducing someone new. Helen asked to come visit but we declined for now. Instead, we interested Jenna in cooking with us, we scrap-booked, and surprised her with a kitten.
Jenna adored her new pet. She named her kitten, Mellow, and took excellent care of her, feeding her and keeping her litter-box clean. She dangled yarn for hours while Mellow played with the skeins and allowed her to sleep with her every night. We let her out occasionally, our yard was fenced and the fresh air did everyone good. Unfortunately, the kitten was small enough to fit through our fence posts and on one sunny afternoon she ran away. We waited several days but when she still hadn’t returned we lined the streets with ‘lost kitten’ posters that had her photograph and our phone number.
Weeks went by and Mellow never returned. Jenna fell deeper into herself and rarely came out of her room anymore. When she did it was merely to lay in the fetal position on the couch and watch television. We offered to bake, take walks or go for car rides to get her mind on something else. We even suggested that we go Christmas shopping, but Jenna was uninterested. When we suggested we get a new kitten Jenna stopped talking altogether. Dr. Saul was kept abreast of the situation and suggested we return Jenna to Hutchings for a brief stay. He was worried she was becoming depressed and suicidal once more.
We coaxed Jenna back to Hutchings where she quickly assimilated to the routine. She remained speechless and had withdrawn even further into herself if that was possible. It was her listlessness that concerned the doctor.
“I have discussed Jenna’s case with the assisting doctor. He suggested ECT therapy for Jenna. I want to explain it in detail to you before we make any decisions.”
“Oh my goodness, electric shock is barbaric, how could you even suggest that, Dr. Saul?” Camille asked through her tears.
“It used to be barbaric, you are correct. Patients were not given sedatives or anesthesia before being lined up for blasts of ECT. They were shocked repeatedly and often died. Today ECT is extremely safe and reliable, especially for cases like this. Patients that are not responding to conventional therapy and medication are given ECT as a means to accelerate the benefits of medication. In my experience, depressed patients, in particular, have rapid clinical improvement as a result of the procedure.”
“Can’t we just try a different medication?”
“We certainly could, however, I don’t want to waste time
and risk stepping backwards. Jenna was showing signs of improvement, but she had an incident that sparked her decline. If we can accelerate the medications, it will be highly beneficial to everyone involved, and I promise you there is no risk of injury.”
“So how does electric shock therapy get administered nowadays?” I asked.
“Good question, Shirley. We start by giving the patient muscle relaxants or anti-anxiety medication to relax them and get them ready for the procedure. We insert an IV so that we can administer an anesthetic. Both medications serve to protect the patient from injuring themselves and our staff. Small electrodes are attached to the scalp and seizures are induced with the electric stimuli. Seizures last from twenty-five to thirty seconds. The technique will be administered two to three times per week. Normally a series of twelve procedures is given over a course of three weeks. In Jenna’s case I would opt for a four week course, starting with two treatments and increasing as necessary.”
“What are the side effects of this, Dr. Saul?” Camille asked.
“As with any medical procedure the patient runs the risk of reacting adversely to the anesthetic used. This would be extremely rare, but it has happened. Also, extremely rare would be cardiovascular complications, or oral complications. As I said earlier, she will not be in any pain or discomfort, but she may feel confused or have a headache afterward. Some patients have a brief period of memory loss, or feel nauseous. In my professional opinion, I do feel it is worth the risk. Jenna is at a pivotal point in her treatment. I would strongly urge you to go home and think it through, discuss it with each other, and call me with any questions.”
We asked to visit with Jenna before we left and were led into a group room where Jenna was sitting watching television. She slouched on the sofa, hugging her knees and averting her eyes away from us. She talked to herself in the language only she knew and hardly noticed when we left. Screams and sobs from other sick patients echoed through the hallway and rang in my ears.