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Trapped by mental illness ... and a health-care system that failed her

Posted Oct 22 2008 4:32pm

SHE LAY THERE, her legs wooden and stiff, eyes closed and mouth wide open. She looked like one of my 5-year-old son's dolls after he's finished with it: lifeless, and done.

God, I thought, if only my mother could see herself now. She hated people knowing about her health problems. How could she hide being dead? But this moment was as much ironic as it was horrifying.

It was Jan. 18, around 6:30 p.m. when I saw her, hours after she collapsed, presumably on her way to the bathroom where she always hid in times of crisis. We believed it was a heart attack, but that was merely a guess. Not until the autopsy report was released, three months later, did we know it was exactly that. We could say we didn't see it coming. But then again, maybe we did.

To say we were sad --- my father was there, as was my sister, who found her --- would be merely stating the obvious. We were relieved, too. It was the end of five years of hell, five years of bouncing around psychiatric hospitals, assisted living facilities, and nursing homes. It was the end of five years of fighting over psychiatrists and medicines, doctors, healthcare aides, and nurses. Now she was home; now she was at peace.

"If she would only take the damn medicine" was one of the first things I heard my dad say, minutes after I first saw her that night, at our old house in Point Pleasant. I'd heard him say that a hundred times. It was always his cry for help. Going back to November 1998, when my mother's 30-year battle with mental illness was first addressed, he would rant and rave about his inability to solve her problems, and hope that whoever was in the room at the time was listening. No one ever seemed to be.

I am writing now, partly because I find writing therapeutic. I often flashback to what I've experienced over the last five years, and I continue to second-guess myself over what I could have done differently. But blaming myself or my family would be too easy. I want the world to know what failed my mother, and how helpless and isolated my family felt as we wrestled with a mental health-care system that's resistant to any sense of organization or progress.

And as I recall everything my family went through, I no longer want to be alone in feeling this way.

November 1998

This was when we finally got my mother help. For nearly 30 years, we knew she had a problem. We just didn't know what it was.

She'd wash her hands until they were red and flaky, her skin nearly shrunken to the bone. She drank coffee by the gallon. She filled four closets with clothes she never wore, stuffing them to the point that the doors wouldn't close. She broke her knee in 1973, and even after some physical therapy, her leg deteriorated until she could barely walk. Yet, inexplicably, she never went to doctors. Only gynecologists.

She repeated questions over and over, as if she were proofreading her own conversations. She used the bathroom as many as 14 times a day, often making my dad stop at a variety of rest areas, restaurants, and gas stations while on long car trips. She sealed boxes of cake or cookies with electrical tape so no one could take any.

In a word, or two, she was obsessive-compulsive. But we didn't know that, not yet. All we knew was that a bladder operation early in 1998 made worse whatever was ailing her. The fact that it was a correctional procedure was lost on her. To her, the bathroom was no longer safe.

Indeed, for months she was in a panicked state, worried that going to the bathroom would somehow hurt her. She drove not only herself crazy but everyone around her. I used to get calls from Dad, pleading for help. But if he couldn't, I often thought, I certainly couldn't.

One day, she talked of suicide. That was actually a good thing. You can force someone to get help only if her own or somebody else's life is in danger, we were told, and suicidal thoughts were a tripwire.

My dad called the crisis center at Kimball Medical Center in Lakewood; that led to endless hours in the hospital, where my mother refused any kind of help, and pleaded to go home. By morning, however, it was too late. By then, she was unable to leave, committed to the Shoreline Behavioral Health Center in Toms River.

The next morning, I got there expecting to walk into the middle of a cuckoo's nest. It was, after all, the same place that treated Sam Manzie before he killed 11-year-old Eddie Werner when he was selling candy for a school fund-raiser. But I was pleasantly surprised. Except for the occasional screams and incoherent rants of the patients from their bedrooms, it wasn't so bad. It was relatively clean, and carpeted. A big television set had sports on, and the residents sat calmly and watched.

The only problem was that it was temporary -- she could be there several weeks. No longer.

"I just want to go home, that's all," my mother kept saying. She was really sickened by this experience. She grew up around this stuff, and never imagined ever seeing it again. Her father was an administrator at Greystone Psychiatric Hospital in Parsippany. He was obsessive, too, a cheap alcoholic who did anything he could to save a buck. During her teenage years, he moved the family into a house on the hospital's campus, which was rent- and mortgage-free. Years later, my mother spoke of how she used to see the patients outside her window, running wildly around in a cornfield.

On this day in November 1998, her hair wasn't washed, and for the first time in 25 years, the blond was disappearing from her scalp. She continually pleaded to go home, and the more she did, the more she hoped Dad would do what he normally did: buckle under to pressure. But this time, he stood his ground, and refused.

Where she failed with my dad, however, she succeeded with the social workers and psychiatrists. It was really a mismatch, actually. My mother was the master manipulator, and she charmed them the same way she used to charm people into buying acne medicine from Avon. She'd lie about herself, and talk about how she was perfectly fine, that there was nothing wrong with her brain and that she was ready to go home. And she would play the part so well.

By the time we got a chance to talk to the professionals, they sounded like her, merely repeating what she said and seemingly believing every word of it.

"Why can't you take her home?" they'd ask.

My father would respond that she's too much to handle, that she needs more help than he could provide. But they'd just respond the same way: "Why can't she go home?"

June 1999

It was time for my mother to move again, to an assisted-living facility called Brandywine in Brick Township. It would be her fourth home in five months.

Earlier in the year, she had flunked out of a similar though smaller assisted-living facility in Berkeley Township. There, she was taking the prescription drug Luvox and doing reasonably well, even playing the piano in the recreation room and entertaining her fellow residents.

But she stopped taking the drug, and soon after, the old obsessions returned, as did the repetitive worrying over her bladder, her hands, her food, and on and on. By May, she was back at the crisis center again --- my dad again spent nearly six hours with her --- and then to Shoreline, which again, was only temporary.

The new place looked more like a time share in Myrtle Beach than an assisted-living facility. It looked perfect, sparkling clean and friendly, even though my mother took one glance at it and repeated the same refrain she had repeated for months.

"I just want to go home," she would say. "When can I go home?"

When my dad and I arrived, we dropped her off in her room while we talked to the administrators. We were impressed, we told them. Still, I had questions: Are you sure you can handle her? What kind of doctors do you have on staff? Are you aware of the things she does? Are the nurses properly equipped?

The administrators must have thought I was some kind of ninny. They laughed at my nervousness, and sought to assure me everything was A-OK. I'll never forget what one administrator was telling me as I was leaving the place. "Don't worry, Tom," she said. "We'll take good care of your mother."

June-July 1999

Within weeks, there were problems. My dad was already growing nervous that Brandywine was going to boot her out. Call me naïve, but I couldn't understand.

"That's not what they told me," I kept saying to him. I suggested he remind the nurses what the one administrator had told me: "We're going to take good care of her... ."

But my dad said it went a lot deeper than that. My mother's constant repeating was getting to the nurses. She was hoarding food, collecting gallon-sized containers of ice-cream and eating very little of it. She collected cans of soda but rarely drank a drop.

Still, I was in denial. I couldn't believe that anyone would lie to me, at least no one in the healthcare industry. I didn't believe that her resident status was in peril. So I telephoned the head nurse, the one who was leading the charge to get her out of there. Her words surprised me.

"You don't understand," she said. "This is not the kind of place for your mother." Unfortunately, she didn't tell me what place was.

I challenged her the same way I challenged my dad, again repeating what the administrator had told me. "She told me you'd take good care of her," I said.

As I said this, I could hear her sighing and seething on the other end of the telephone line, obviously steamed that I was making sense.

"But you don't understand," she repeated. "This is not the kind of place for your mother."

May 2000

It was Mother's Day at Ancora Psychiatric Hospital. By then, my mother had long overstayed her welcome at Brandywine. Staying at home didn't work, either. She refused to take her medication; not surprisingly, her behavior was getting even more erratic, and more stubborn. She didn't bathe unless forced. Even Shoreline wasn't good enough for her.

Now she had to go to this isolated complex in some desolate patch of the Pine Barrens, South Jersey's no man's land, where the grass was overgrown and yellowing. At Ancora, the drugs are injected if you don't take them willingly.

When we arrived, no other sons and daughters were there. Just myself, my wife, and my then-2-year-old son. I called beforehand and was told that it was OK to bring them. Admittedly, I was reluctant. But Ancora told me my son wouldn't have to walk through the "scary" part.

Plus, I kept thinking how horrible it was for any mother to be there, by herself, on this day.

Once there, I was immediately struck by how empty the lobby was. All the life was behind a metal door, surrounded by a wall made of rectangular cement blocks, like a cellar. The door was locked shut, so from the lobby I couldn't hear a thing. Yet as I entered and left my wife and child behind for what I hoped would be a brief period, I heard more than I wanted to.

There were screams and moans coming from all directions. The people walked by me, rambling or yelling about anything. And they smelled. Some had their names written on the backs of their shirts out of fear that their clothes would be stolen. Immediately, I thought to myself, "Now I really am in the cuckoo's nest."

A pay phone --- the patients' telephone --- was on the wall, with the receiver hanging off the hook. At one point while I was there, a patient tried making a call on it, but another one snatched the receiver away. I had tried calling my mother on it earlier, but one of the patients answered and said something incoherent before hanging up.

In the dimly lit hallways, I didn't see my mother right away. Rather, one of the supervisors saw me first. We talked about how I was told I could bring my family in there, or at least into the vacant lobby where my mother could at least touch my son's hand.

"I'm sorry," she said. "No one should have told you that."

But that was the whole reason why we drove two hours to be there, I told her.

This took a while, and I wasn't ready to give up. I ran out to the car, and my wife convinced me to keep pushing. Eventually, however, my wife got fed up with waiting, and began to explore other opportunities.

An overhang that extended off one side of the building caught her interest. Maybe there's a door there, she thought. She got out of the car and carried my son, on her hip, to the other side of the drab building. Yes, there was a door there, and it was open. Still, she thought: "Why the hell is it open? What if the patients got out?"

Beyond that, however, she found a locked metal door with half-inch-sized holes throughout, like a giant pegboard. She pushed on it a bit, hoping it would open. It didn't, but she did spot my mother through one of the holes.

She called out, and my mother didn't hear her right away. "Look," the attendant said, noticing my wife first, "your grandbaby is there!"

My mother walked over, and they talked, through the holes. My mother, my wife says, was locked in self-absorption, saying how terrible the place was. She was obsessing over whether I followed through on my promise, to bring her coffee.

This was the woman my wife knew, too. So she was startled when, for several long seconds, my mother stared at my son, who was staring right back at his grandmother, through another hole.

My mother noticed his eyes. "What color are his eyes?" she asked.

"They're brown," my wife said. She didn't want to tell anybody that if you looked closely, you could see a little green. It was just too much to explain.

My mother, however, saw the color buried in there. "No, I can see the green," she said.

My wife was amazed. Somehow, even with her vision, and seemingly, her wits as limited as they were, my mother knew.

April 2001

My mother was a mess. She was home, with an aide, a month removed from her latest stop, a nursing home in Neptune Township. Since the previous summer, however, when she left Ancora, she had grown 10 times more independent and 100 times more stubborn. To say she was erratic would be putting it mildly. She was acting downright goofy.

Perhaps it started at Ancora, where she had bonded with a fellow patient who was a past sex offender. The guy wrote letters to her, and made innuendos that virtually constituted date rape.

Once home, she was ready to party. Unable to drive because of her leg, she was making frequent delivery calls for pizza, sandwiches, and beer, and stuffed it all into the refrigerator. The pizza and the sandwiches just sat there for weeks, uneaten, and each food item grew mold the size of a small vegetable garden. She'd drink beer until she passed out, snoozing in a chair in the living room.

During the day, she was bopping around town, buying clothes at an alarming rate. By the end of the month she had spent more than $5,000 on food, partying, and clothes that she never even tried on.

Her physical condition was never worse. She walked around with a severe limp, favoring the same old leg with the same old knee injury. Years of walking like this caused her back to bend over at a 90-degree angle. She had a walker, but she often left it behind. My mother would sooner die than realize her limitations.

My father and I decided to get tough. Only this time, I volunteered to be the bad guy. It was a Saturday and I went to Point Pleasant, unannounced, armed with a cellphone and a piece of paper listing numbers for the crisis center and the police.

I ordered my mother to go with me, to get help. She screamed at me and dug her hands into her chair, pinching it with her finger tips and acting as if I was going to pull her away.

I called the police. She called a taxi. She wanted to go shopping, she said, which meant a trip to the supermarket or even Applebee's, where she had gone on previous excursions and typically ordered a glass of beer for herself. I canceled the taxi and waited for police.

My mother was screaming. "Thomas, you call the taxi back right now!"

I was hurting so much over this. I really wanted to give in. But I couldn't.

The police arrived. But when they got there, they told me they needed a reason for coming. At this moment, I looked around and spotted a coffee pot that my mother had broken earlier in the day, the shattered glass from which was still laying on the kitchen counter.

"See, look at what she did!" I said, and then expanded it to a lie. "And I think she cut herself, too."

The crisis center was called, and two social workers were dispatched to my parents' house. They arrived about three hours later. Both looked like they were 18 years old.

They walked in but didn't sit down. It was like they were ready to go already. They each stood about 10 feet away from my mother, asking her simple questions, none of which probed too deeply. In some cases, their own questions provided the answers, like "So you're OK?" "What happened with the coffee pot?" was perhaps the most controversial one.

My mother, meanwhile, washed her charm over them, like a warm bath. She managed to display one of her patented smiles, and even though her face was pale and scrawny, she could still make herself look pretty and trusting.

Shortly thereafter, the social workers left. I stopped them as they walked off the porch and pleaded with them to reconsider.

"You don't understand," I was told. She had to be endangering her own life, or somebody else's, they said, in order to get them to act.

I heard that before, I told them. But I also said that someday I was going to walk into that house, and find her dead. Then somebody was going to get sued.

"That's your right," I was told.

Days later, my mother got into an argument with her aide, then ran to the neighbor's house, in her stocking feet. The neighbor said my mother wasn't making much sense.

My father arrived soon after, and so did the police. Within hours, my mother was back at Shoreline. Within days, she was back at Ancora.

So much for being OK.

January 2003

I had my son, who was then 4 years old, call his grandparents. By then, it was safe to do this. My mother had been home and had been doing rather well. A stay at a New Brunswick nursing home near my house in Metuchen during the summer of 2001, once she was out of Ancora, actually worked out well.

But it was no permanent place, and she ended up home again. Only this time, her behavior was better, and she was perhaps wise to her ways, or at least somewhat. Sure, she was obsessive. Sure, the freezer was filled with ice cream containers. She was still drinking coffee out of oversized mugs, filling them to the top, to the point that drips were spilling over the side. My father even got a health-care aide, but my mother fired her.

However, this time --- or, at least it appeared that way --- she was making sure that her stay would stick.

I instructed my son on what numbers to push. He heard a click, and then wondered aloud why a panicked woman's voice was coming from the other end. I thought to myself, that's not quite right. My mother never answers the telephone.

I moved it closer to my ear and heard my sister's voice.

"Thomas," she said. "Mommy died!"

My mother had fallen while she was getting the mail, on the porch. A neighbor helped her back in, but my mother, whose nose was bleeding, refused help. Soon after, she tried reaching my dad, who had gone up to the family's other house in Ocean Grove, and left a panicked message on the answering machine.

She called my dad, I thought later. She didn't call 911. Even in her last minutes, she still couldn't get help.

This article was originally published in The Record of Bergen County on April 20, 2003.

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