Then There Were Four
Before leaving home to drive from Portland to Camp Pendleton after returning to the states, my mother kept insisting that I had to see my sister in San Jose. I did not want to stop and see my sister as I only had a little time to see some friends before reporting to duty but my mother persisted.
While in the bay area, I made the mistake of calling home and my mother seized the opportunity to once again press me about visiting her.
"You are her older brother" she said and "she wanted to see me" and "she has not seen me for a few years. You owe it to her because someday you will have to take care of her." I never understood why being her brother somehow took precedent of taking care of her over her parents.
Toni had been transferred to Agnew State Hospital in San Jose from Porterville State Hospital so "she is just down the road" as my mother put it. So with great reluctance and annoyance at this interference, I drove to the hospital to spend a few minutes with her and then get on my way.
Driving around the enormous grounds, I tried to remember how long it had been since I last saw her. I was 20 now and she was 19. I did have some memories of what she looked like as a child but it was so long ago the image was a blur.
I was really annoyed that I had to do this right on my last 48 hours of leave. Angrily I thought: Toni has parents why do I have to do this? I barely knew her. I was 5 or 6 when she was sent off to Porterville State Hospital and it has been 10 years since I saw her.
I drove up and parked outside of the old yellow building of Spanish architecture where she was housed. Looking through the cyclone fencing that surrounded the building, I could see many of the patients sitting or walking around. As I entered through the gate some of them, either out of curiosity or believing I was someone they knew, approached me as I headed to the steps to quickly get inside before they reached me. My skin got goosebumps
Pushing through the large double doors, I entered a large entry way with high ceilings. In the dim light it looked like a vault inside. I thought "Jesus. What kind of a place is this?" The poor lighting gave the room a shadowy look and the long hallway ended in darkness at the other end of the building. Patients were shuffling and wandering around the lobby while others were sitting along the wall. Many had bodies that were contorted or misshapen. Some walked like their bodies had been broken. Awkward with uneven and jolting movement. Many of them walking aimlessly around in the entryway seemed as if they were lost and little did they realize: they were. Upon seeing me, some slowly made their way in my direction as if to say hello or tell me something.
As I made my way to the large reception desk I had to gently brush aside hands that were reaching out to touch me. Their mumbling and sounds made me very uncomfortable. Mumbling words that only they could understand, they were trying to get my attention. You could see they spoke with intention and that something was on their minds but the distance between their thought and speech was too long for anything to come out that was understandable. Their mouths couldn't shape the words to be understood. I watched one standing before me trying to forcefully say something with such effort that he had a painful look on his face. With as much politeness and patience as possible, I made it to the desk to ask the nurse if I could see my sister Toni.
"And what is her name" she asked.
"Antonia McLalan. She is my sister." I said.
"And you are?" she asked.
"Bob. I am her older brother" I replied.
She asked me to sign the register and wait a few minutes and she walked down the long shaded hallway and her white uniform disappeared into what looked like a ward. I looked at the guest register found her name. I was stunned by what I read. I was the first visitor she had from a family member in over 5 years. A former neighbor had visited once in the last two. I was shocked as we annually would be visiting the bay area during the summer and lived in the bay area when she was transferred to Agnew. Trying to comprehend the absence of my family's name from the visitor register gave me a feeling of shame.
Still the object of curiosity by many of the patients, I became surrounded by misshapen faces and bodies trying to tell me something. I had an eerie feeling at that moment and was not happy that my mother pushed this visit on me, when I heard my name spoken by the nurse and turned around. I saw the nurse standing there holding the hand of this short, small adult girl, with this flat face, who held her teddy bear in her arms. Her hair was dirty, oily and flakey with dandruff and the dress she wore was way too big for her. Her face was flat, her eyes were dull and she unmistakenly was a Down's Syndrome child. Unlike my brothers and myself who all over 6 feet tall she was not even near five. There was no resemblance to any of my family at all. I had no idea of what to say. I just stood there looking at her.
The nurse bent at the waist turning towards her and said "Toni. This is your brother". It must have been one second before I felt her arms around my legs and heard her crying incoherently "Mybrudder, Mybrudder."
I stood there in the middle of that entryway looking down at the top of her head and wondered "what in hell do I do here". She looked familiar from the picture on my mother's night stand but I had no feelings for her. I didn't know her at all and certainly did not know what to do with her. I wanted to leave and get the hell out of there but she shook and hugged me so tight that I finally bent down, freeing one arm from around my legs and said. "that's ok Toni. Take it easy. Take it easy. I came to see you for a visit." Unlocking her grip, I took her by the hand and asked the nurse "Can I take her off the grounds? Can we get out of here?"
I bent down to her face and said "Toni, listen to me. Settle down, settle down here; are you hungry? Would you like something to eat?"
Immediately, I struck a chord with her.
"I want a hamburgercokefrenchfriesblackcoffee." Her complexion brightened up and with that we slowly walked through the crowd that had formed around us and went out to my car and drove off to a restaurant.
During our dinner, I tried to make conversation with her but it was impossible. She would just nod her head up and down and sideways with her mouth stuffed with food. She ate with both hands at once moving drink and food like a conveyor belt into her mouth. Sitting there, aware that people were looking at us I felt very awkward. As people walked by you could see the looks of sympathy and sadness on their faces. Kids stared at her as if she was a sideshow freak in a carnival. I could hear the parents telling them not to stare or don't pay attention to her.
She had nothing to say to me about anything. As she sat in the booth chowing down the hamburger and French fries, she was oblivious to me. She refused to give the menu back to the waitress and with grunts continued pointing to pictures of food that she wanted. Everything on the menu or on the plates being delivered to other people would catch her attention. She stayed focused on the food. Suddenly she raised her head and with her mouth full of food said "bathroom. Ineedtogobthroom."
Oh great. In an instant I had no idea of what was involved with that.I can't help her that. Jesus, does she need help? Do I have to go in there with her. Questions ran through my mind until she repeated. "bathroom". Still chewing her mouthful of food I said "come on I will show where it is?" She stopped chewing, swallowed her food, neatly folded her napkin and placed it on the table. She rearranged her glass and plates pushing into the center of the table and got out of the booth. I stood and we walked into the back of the restaurant. Standing outside of the Women's restroom I pointed the word and said you are in here. "Are you ok? Are you be all right here?" She nodded and walked inside. Waiting anxiously for her to come out I kept hoping that it wasn't going to be disaster. It wasn't. She came out and we returned to the table and finished our meal.
She was short but she was not underweight or malnourished. She was roly poly so she didn't suffer from a lack of food. I kept fumbling around for something to talk about. I felt the need for some reason to reach her but her vocabulary though emotionally expressive consisted mostly of grunts, squeals and nodding her head yes or no. Her attention span was very limited. Finally, I resigned myself to just being helpful to her, take her back, drop her off and get on my way.
On the way back she was very quiet until she recognized the grounds of the hospital. She kept repeating "nogo wid you. "go with you my brudder" and pointed at me with her small fingers. I told her she had to go back the hospital because by now I needed to meet my friends and get on with what little time I had left on leave. When I pulled up in front of her building she started yelling "no" and tightly grabbing the door handle she sat immovably in her seat. I tried to explain to her that she could not go with me and this is where she lived but explanations were useless. She was operating on her instincts and experience in the hospital. She refused to budge.
I started to try and pull her out of the car but she would not move. Either I had to grab her arm and yank her out of the car or reach in grab her body forcefully pull her out.
Finally, I promised her that I would come back and see her. I knew that I would not be up here once I reported back to the base for a while but it seemed to calm her. She continued crying as I firmly started pulling her out of the car. I kept repeating over and over as we struggled up the sidewalk to the doors that I would be back. I was her brother and I would be back. I promised I would return to take her out for another hamburger. Finally, once inside the fence the nurses came to take her from me and that is when the fighting started. She kept pulling her arms out of their grasp shouting all the time that she wanted to go home. "Go with me. Gohomegohomegohome." They finally got her under control and moved her through the double doors and down the hall to the ward. I quickly made my exit as my presence seemed to escalate the situation and I left bewildered as to what to do next. I made it out to the door of my car, got in, slammed it closed. I had to take few seconds to catch my breath before starting my car and heading to the city.
Six months later I was released from active duty and packed up my gear to move to Mountain View to attend Foothill College. I was not there a week before my promise to visit her finally got me to drive over and see her once again. This time she was more orderly and calm, acting as if I was there all the time. I took her to the apartment that I had rented to allow for a longer visit than a restaurant. Getting some food and beverages we walked to the pool. It had a number of tenants lying around in bathing suits and they soon found themselves with Toni talking to them. "My brudder" and she would point to me. "My brudder" and then she would giggle delightfully. The tenants engaged her in conversation and quickly asked her name and the name of her teddy bear. They got her a chair and a coke which transformed this unhappy girl into a smiling one. But once again when night came and she had to leave, she knew without being told that the car was headed back to the hospital and the same struggle would occur again.
The salve that finally soothed her in the end was my repeated promise to be back in a week. I asked her if she knew how many days that would be? Of course she didn't so I put up seven fingers. "That is seven breakfasts. Can you count to seven? Count to seven for me" but she couldn't. I took each finger and counted them for her. One for each day at which time I would come back to get her for the day. Looking at her hand I could see she had the short stubby thumb of her mothers. All three of her brothers had the same shaped thumb. There was only one family I have ever met who had thumbs like that and that's mine. Looking closely at her, I could also see she had the sturdy facial structure of my father. She had his hair. My God, I thought as I began to realize that she is one of us.
When I finished counting, she smiled and said "Coke" 'Can I have Coke". Yep. You can drink a six pack and when you turn 21, I will give you a six pack of beer how is that? That will go real well with all the medications they are pouring into you. Just behave yourself. I love you. I will see you in a week." She gave me a big hug. I could now see why the nurses had trouble wrestling with her. I said "is that the biggest hug you can give me? Come on give me a hug" and with all her strength she gave me a big squeeze and with that I walked her into the ward.
From mid-summer through the fall I picked her up every Saturday and returned her at night. She was trying to get me to let her stay with me but I had to quickly put an end to that idea. Going to college and working at night did not give me the time to have someone around who had to be attended to all the time. I was no caregiver. I was busy. It was not something that I wanted at all. If I had the time and inclination to take care of something I would get a plant.
She seemed contented to accept the routine. The young women in the apartment would help do her hair and the guys would dance with her in the evenings. At least for one day out of her week she was no longer a patient but a 20 year old woman having fun.
She was fun to watch dancing in the apartment. She loved to dance. Everyone would tell her how beautiful she looked and she loved the attention. Whenever she would disappear into the bathroom to do her make-up, she would reemerge with lipstick all over her mouth, red rouge spread thickly on her cheeks, her eyes shadow spread too far and her hair all wet from trying to style it. She was unconscious of herself. If she felt beautiful she was. If you told her she was she believed you. I remember thinking that in her mind normal people weren't the standard. She had her own. She must have, since standing before a mirror she could see what she looked like compared to the other women but somehow she didn't seem to notice the difference. All it took was a smile and a compliment. Standing there in front of the party waiting for a compliment she would beam when someone said how beautiful she looked.
She made me wonder what was she seeing as she stood there among all these young women and men. Did she see that she was unusual? Did she feel like she was different? Was she angry that she was unlike other people? Did she feel sorry for herself? What did she see when she looked in the bathroom mirror putting on her makeup? Did she ever cry about not being like other people? Were there tears for not being beautiful or not fitting in others? Could she really lack the self consciousness that normal people are plague with? Is it possible that it is she that has the better attitude about herself than normal people? These questions about what could going through her mind have never left me. I concluded that she just saw herself as Toni and if you told her she was pretty she would believe you.
These parties revealed something else about her. That is in spite of her mental retardation and disproportionate facial and body features she loved affection and intimacy. I would watch how she would sit next to a friend of mine and slowly stroke his hand and want to give him a kiss. How she would giggle as I kissed my girlfriend. She would giggle and laugh as she put both hands over her face in embarrassment and say "helikesyou". She would point at my girlfriend and say "youmybruddersgirlfriends" and giggle some more when I kissed her again.
She loved to dance all the time. She loved rock and disco music the most. You could her lips moving as she sang along with the record. Her movements were not all inhibited. She must have learned to dance from TV because she would bump and grind her round little body as if she was back up dancer.
Everyone would laugh and say how Down Syndrome people are so cute and affectionate but I began to suspect that it was a lot more than that going on. I would watch her and think about the fact that in so many she is different from people and yet her body and her mind go through the same stages we all do. She knew laughter and tears. She could be sad. Her facial expressions indicated that she experienced the full range of emotions like I did. She knew beauty and would gravitate to those that were. Her problem was she just couldn't communicate it in words. You could read her moods or see her emotions show but she just couldn't articulate them. The key to understanding her was through her expressions and looks of what she felt and thought.
In so many ways she was like human beings everywhere. Toni went through puberty, menstrual cycles and if she is capable of all bodily functions including giving birth, why wouldn't she want to kiss a man or dance with him even if she can't understand the urges that she has. When she would reach over to pet my hand I would tell "knock that off I am your brother" and she would giggle which made me wonder what is really going through her mind. It became our little joke but she began to understand that I was a brother not a boyfriend. I decided to keep the knowledge that my sister was more lustful sometimes than affectionate to myself. I didn't want to spoil her fun or make anyone uncomfortable and if everyone thought she was just being cute and affectionate then so be it. She will enjoy the kisses anyway.
One Saturday, I arrived as usual to pick her up but was informed by a nurse that she no longer lived there. Gone within in a week and without any warning. She had been transferred to a group home in Hayward. The State of California found these old institutions like Agnews insufficient in helping the mentally retarded find a place for themselves in society. I was quite annoyed that I wasn't notified especially since I was her brother and visited her every week. She told me that it was not their responsibility to do so. The state was her conservator and as such could move at their pleasure. I had no legal authority whatsoever and even if I was her parent or a guardian the state had legal power over her because she was supported by it.
She was transferred to a lovely home in the Hayward hills. The neighborhood was comprised of nice homes with lawns and parks everywhere. The house was owned by Frankie Rambo. A lovely charming widow, who had a beauty shop downtown. My sister briefly had her own room with her Elvis and Michael Jackson posters on the wall and the house was filled with nice furnishings. There were just two girls, Toni and Carol living with Frankie at the time. I was quite amazed at how fortunate Toni was to be sent to Frankie's. Frankie saw to it that the girls had many activities to keep them busy and to provide some behavior management programs. Additionally, Frankie had a friend who followed her into the group home business but she chose all boys. By the time each house had 8 clients, the parties and dances were going on all the time. I have a large picture of my sister and four of the girls sitting together on the porch posing for a picture. It taken during a good time in her life.
Comforted by the fact that Toni lived in a good home it was time to focus more on my schooling and work. Driving to Hayward each weekend and spend a whole day of it with Toni took a of lot time.
My middle brother, Bill moved to Mountain View to attend college and provided a lot of company for myself and my sister when visiting her. Toni quickly grasped the concept that she had two brothers now.
My brother had no memory of her living at home since he was 1 when my parents sent her away. But he knew they were related and saw to it that he participated in spending time with her. The only complication he added was that I had to convince Toni that Bill was her brother and not her boyfriend. He was lucky that he was too young to remember us taking her away to Porterville.
I remember when we made the trip in the family station wagon to put her into the state hospital. My parents rented a motel room on a very hot day and while I played in the pool and my father found an air conditioned bar next door with Schlitz on tap. My mother sat in the motel room doing Toni's hair. For a couple days my mother would sit in the motel room brushing Toni's hair and cry. She would put braids and clips to make into different styles, play with her dolls and tell her how much she loved her.
Finally the time had come to drive her out to the hospital and put her away. The decision my two parents made to put her into an institution for the rest of her life must have been one of the most difficult ones they ever made. Over many years, I wondered what they told each other and how each of them felt about doing this but I was not a party to this decision and over the remainder of their lives refused to talk about it. I know they each had different feelings about Toni and over the years their behavior gave me clues as to what they felt but they would not discuss her. I could not imagine the difficulty of making that decision and have always tried to give both of them the benefit of the doubt due the complete lack of alternatives available to them back in the early fifties. The path to this decision was fraught with facts, disappointment and circumstances that left them little choice in the 1950's.
My father was a career Master Sergeant in the marines and was on deployment to Korea, leaving my mother out at Camp Pendleton with myself, Toni and the infant Bill. Having few resources available, my mother found it impossible to care of Toni. She struggled with the management of two boys and a daughter that required care all day while her husband was fighting in Korea.
She also struggled with tremendous guilt, as she felt God had given her Toni as punishment for a grievous sin she committed some years back. She stopped going to Mass and take communion. The realization that something was wrong with Toni took a long time for her to accept. My father once told me that she kept finding doctors to tell her something different in spite of visible evidence that Toni was unlike other babies.
I believe the recommendation to send Toni away to an institution must have broken her heart. She had a brother who was sent away to a mental hospital during the war so she was very familiar with the separation and loss of her brother Joe being institutionalized for almost the rest of his life. In spite of the fact of Toni's condition she went ahead and named her daughter after her favorite brother Tony.
The day came when she could not go on anymore and against her husband's wishes, applied to the Marines to return him back home under hardship conditions. It was during that period that the decision was made to send her away to the state hospital in Porterville.
I stood in the motel doorway watching my mother crying while she ran a brush through Toni's hair. She tried to make her voice sound playful and excited but the tears that I could see from the door were impossible to hide. To Toni it was fun and play. I only had a vague idea of what was going to happen but I was too young to appreciate the gravity of the decision and the impact on my sister's life until after her family drove away. While my mother continued to comb her hair and tell her how beautiful she was, my mother could not stop crying.
Toni of course had no idea of what direction her life was headed that morning as we drove out to the state hospital. It was a massive complex of buildings with staff and clients walking about the grounds. All I can remember was the scene at the curb outside her ward when the nurses came to take her inside. When my mother released her hand and the nurses took hold of her something instinctual alerted Toni that some nightmare was occurring. As the nurses pulled her toward the building, telling my mother to drive away and the distance to her mother became longer and Toni fought and cried as hard as any 5 year old child could do to return to her grasp. I sat in the back of the wagon watching them pulling her inside the building until we drove out of sight.
From this point forward the next 15 years of her life her birthdays, Christmas, Easter were holiday's were spent in the ward or day room either alone with other 50 or 100 other people left behind. Celebrating Christmas and birthdays among people with whom she could not communicate with, were not her family and were not in her home with her mother and fathers must have been an empty feeling. Quite the opposite of my holiday's. Meanwhile the family lived only a few hundred miles away.
I would only see her twice over those years until the day I arrived at Agnew State Hospital in January 1969. The only mental image I had of her was from a picture of her in a small oval picture frame on my mother's night stand standing on the lawn in front of our house when she was four.
A couple years after Toni was placed at Frankies my youngest brother Steve arrived in the bay area to live. Now Toni had three brothers. Steve was a musician with shoulder length hair. When he would step of the car she would put her hand over her mouth to conceal her laughter and with her brother she would point at him and yell "hippie".
Steve would bring out his guitar and play some songs for the girls while Toni jumped in the middle bumping and grinding dances she saw on "Soul Train".
As the family began to fill out she started to ask to see her mother. We played around the subject as she continued to press for a visit best we could until finally it became necessary to discuss it with my mother.
My mother's response was much like my dad's. Her responses were : "She won't know me" or "she doesn't remember me" and in spite of my disagreement she persisted in pushing the subject away.
During the years Toni resided at Frankie's my brothers and myself would make regular visits particularly on the holidays and her birthday. The weekly visits were no longer necessary as Frankie kept the girls busy during the day.
It was always easier on these visits if we took Toni to activities that we enjoyed. Whether it was sitting around the pool drinking beer or attending ball games.
Toni's favorite past time was going to the Oakland A's baseball games. Drinking beer and watching the games were great way to be together as Toni was distracted and entertained by the endless flow of people, the game, the entertainment, the hot dogs, the cokes and the ice cream. I tried to explain the game to her but I realized she could not understand me but that did not interfere with her enjoyment of it. When the fans cheered, she cheered. When they stood and screamed she did. Between innings when they played music she stood up and danced. It didn't matter to her at all what was going on the field, she fed on the energy of the crowd.
We sat in the bleachers one day right up at the left field wall and by the fourth inning no one cared if Toni had a couple beers. By the 6th inning she kept poking me with her elbow. I turned and she would look at me with her wide eyes and while holding her hand in front of her mouth and point at the back of Oakland left fielder Rickey Henderson. I could not figure out whether it was the beer, her medications or the Down's Syndrome so I returned to my conversation with my brother until she poked me again. With irritation in my voice I said "what? What are trying to tell me?
She extended her arm in the direction of Rickey who was facing the diamond bent over with his hands on his knees.
"What is it? what's the matter?" I asked and with her extended finger pointed at his well formed muscular ass supported by thick thigh muscles in skin tight pants. She smiled and said "I like Rickey."
"oh my God Toni! You are baseball groupie. She laughed and giggled and kept repeating "I like Rickey".
I told her "no more beer for you today honey."
Frankie started calling to put Toni on the phone so she could talk to me. The conversation would be a one way run on request to see her get hamburger, Michael Jackson, a watch, her mother or come live with me. Sometimes I would have to shout at her angrily to get a grip and behave herself or I would not come over at all. How much she understood was mystery but if I exhibited enough emotion she would back off and settle down long enough for me to assure her I would be over on Saturday and see her.
Not long after, the calls from Frankie were informing me that Toni was running away at night and that she had to call the police. She would disappear after everyone was asleep. I could not tell if she was running away from something or to something. Running away started to come into her life as a form of behavior that had no solution except to send her back to Agnew if it continued. Explaining consequences to her was very difficult if they stood in the way what she wants. She was stubborn, willful and determined if something or someone stood in her way. She had a temper. In spite of her cheerful attitude and loving nature her behavior could become belligerent around the house and running away became more frequent. I had no solution other than to threaten her with sending her back to Agnew or not coming to see her.
What must she thinking when she gets up in the middle of the night, dresses quietly and slips out of the house? What determines the destination in her mind and which direction should she go to get there? It seemed the route she chose was the road who took her to Frankie's. Somehow it made sense to her that the way out was the way in.
I would have to get up in the middle of the night sometimes in driving rain storms in the middle of the week and drive over or stay up calling the police to see if they could find her. They always found her because when she was tired, she would lie down in the middle of the road or intersection and refuse to move until the police or fire department arrived. She would lie stiff and force them to put her on a gurney and take her to the hospital.
One night she had been gone a long time. I received the call around 1 AM. She was in the hospital and I needed to come right away. I asked "can't you just keep her overnight?" The answer was "no". If I didn't come to take back to take her home they would have no choice but to send her to Highland Hospital to the locked psychiatric ward. The nurse added "Mr. McLalan, I can tell you don't want your sister in that ward. It is not a place for her. I suggest you come right away because we will have to transfer her in two hours."
At the time I had to get up for work at 4 AM. There was a strong winter storm of driving rain and wind and driving the 40 miles over the bay to get to the hospital. By the time I arrived I was furious. I went to the emergency desk and identified myself, signed some papers and asked to see my sister. They escorted me into a small room with two beds. In one lie a man who had his guts cut open in a knife fight. The bandages over his abdomen were bloody and he was semi conscious on drugs. My sister occupied the bed right next him. She was buckled down in 4 point restraints. Arms and legs spread to the corner of the bed and short belts buckled around her wrists ankles. Apparently she went on a rampage in the emergency room and overturned tables and chairs before they could hold her down.
When she saw me enter the room she lifted her head and gave me a big smile and said "hi my brudder". In a second I went from the door to the bed and shoved my face down into hers and said. "Do you think this is funny"? Her eyes widened with fear. "Do you think this fun". Do you think I have nothing better to do than get up in the middle of the night to get you. Do you think I want to get up in the middle of night drive 40 miles because you want to go for a walk. Where is the nurse? I hollered. "Get me a nurse". The nurse arrived, I handed her the release papers and with my face back down on hers I said unbuckle her right now!" "Let her go. Get her out of those retraints, God damn it." She started cry. I didn't care. I was really angry. Once released, I pulled her off the bed. All she could say was "I am sorry my brudder. I am sorry my brudder. As we neared the exit I told her I am tempted to put her in the car and take her back to Agnew and with that I put her in the car to take her home.
I sat in the car with her wondering how much longer would this go on. I had my own life to live and the demands of always moving from crisis to crisis was getting me down. Here I was sitting in the parking lot at 3 AM with my sister trying to figure out what to do while she kept sobbing "Iamsorry" Iamsorrymybrudder".
The next day, I went to see her case manager. She explained to me that Toni had a long history of maladaptive and violent behavior. She could be sweet and very likable but very willful and out of control. I said "I just don't understand it. Where in the hell is she going. Running around in dark neighborhoods alone in the middle of the night is not only dangerous but scary. Why is she doing this now that everything is better? Is she just hot for men in uniform? She looked at me and no that's not it.
Then where is she going? I asked.
"She is trying to find you." was her reply.
My brothers and myself thought that the right thing to do was to take her to Portland to see her mother for Christmas. My father was living in a hotel in San Francisco after divorcing my mother and he adamantly refused to see her. His only comment was that she was better off if I told her that he was dead. She would not know him and she is better off where she is.
My mother's response was much like my dad's. She won't know me or she doesn't remember me and in spite of my disagreement she persisted in pushing the subject away. My mother was reluctant but she finally saw the opportunity to gave her three sons home for Christmas caused her to give in.
The three of us had to tend bar that Friday until two AM. We picked a Toni up at about 3 AM and with a case of beer and some road aspirin we headed north to Portland. We had to dress her in all her clothes as the car had no heater. With visible breath coming out of all our mouths we headed north to Portland.
The trip to Portland required a gas stop in Redding and one in Roseburg Oregon. With the gasoline crisis closing stations, we knew we had to get gas in Roseburg or we were sunk. All stations were closed on Sundays and Christmas was on Monday. We timed it as best we could to reach Roseburg well before 5 PM before the stations closed. We sat in a long line waiting to get gas when just 4 cars away the attendant came out and announced they were closed due to a lack of fuel.
The three of us sat in the car and tried to figure out our options when across the street behind a closed station, I saw an Oregon State policeman. I drove over, pulled up next to his car and went to speak with him. The name tag on his chest said Hand.
I was pleading to him to help us get gasoline but to no avail. He dealt with problems like this during the gas crisis. His response was very official and impassive which conveyed to us that there was nothing he would do. For a moment something behind me caught his eye that immediately changed the composure of his face. It surprised me so I turned to see what he was looking at. There in window in the back seat of my car was my sister with her snow cap askew, her collar up and her cold face pressed against the window to see what was happening. The expression on her face was one of worry and anxiety for me as she saw the policeman and understood what it meant. Immediately, I turned back to the officer and said. "You have got to help us get a tank of gas. I am taking my sister to home to her mother for Christmas and if I can't get out of Roseburg now we will not have another opportunity to get gas until Tuesday morning. She needs nurses care. She has to take her medications. I can't take care of her, I can't stay here with her for days. She needs care. You have got to help me."
Without a word he pulled his car back and moved it adjacent to mine. Without speaking he got out and took a rubber hose from the trunk of his car and put one end of it in my tank and the other in his. He hooked up a small motor that pumped gas from his tank to mine. He gave me a quarter of tank. He got the radio and called in looking for station that was still open. Taking his pen and notepad he wrote down the directions to a station out of town which stayed open for the locals. "This is the best I can do. Good luck to you and Merry Christmas" and with that Officer Hand drove off. We got the gas we needed and headed to Portland for Christmas.
My mother's house was decorated with a small tree with lights strung around it. Christmas banners were up and the manger was under the tree. My mother put pictures on the table and shelves of the family from prior holiday's. The holiday portraits showed her three sons, arms over each one's shoulder, my father sitting in his easy chair by the tree. Along the shelves decorated with small holiday figures were the trophies we were awarded as boys. Our high school diplomas were tacked up on the wall. The only picture that gave any hint of my sister was the small oval photo of her before she left for Porterville that sat on my mother's night stand. There were no photo's of all of us together. Nothing that would indicate that she had four children and not three.
My mother held up ok with my brothers there and Toni spent most of her time eating and watching TV until the day we left. She offered no resistance when leaving. Where her brothers went, she went. In spite of the anticipation of the visit it turned out to be uneventful.
Toni was here one day and gone the next. That seemed to be the pattern of her life. Whether it was deliberate or accidental it nevertheless was an action that showed an utter disregard for the need to have a home and some stability. Without even a call to me, I discovered that my sister had been removed from Frankie's after 13 years and sent to an address in Oakland. I only discovered it when I called to tell her I was coming on Saturday to see her. Her only answer to my question as to why was she moved; she simply said the regional center wanted her moved and other than that she had no other information to give me.
I called the regional center in Oakland to find out where she was. Since I was not her conservator, they informed me that they were under no obligation to tell me where she lived. Finally, her case manager called me and gave me her address. It was then that I began to realize that the state did not always know best. It is an assumption that everyone makes in trying to rationalize the decision to commit someone to a life in a state institution. The government knows what my sister needs.
I relied on the recommendations of the doctors, staff and administrators but now I could see clearly that this reliance was misplaced and how people, like my sister, can fall through that cracks in a large state run organizations and disappear into a hell hole somewhere with no one knowing she exists other than on paper. In their world no one knew I existed which is why I never got a call.
Driving through the neighborhood behind the Coliseum the houses would have metal bars over the window and well fortified screen doors for protection. The plywood windows on abandoned houses, cars rusting along the curb and graffiti were all indications that this area was heavily infested with crack cocaine and crime. Down in the center of the neighborhood was the address where my sister lived.
Being admitted into house, the interior was ok. I wondered where she was as the living was only occupied by an employee who was lying on the couch watching a game on the color TV. I asked for my sister and he pointed down the hall to the kitchen. Inside there four other girls with my sister, sitting around a kitchen table eating and watching a cheap black and white TV on the counter. My sister had a gained a lot weight very quickly. I deduced that being warehoused like this was all the activity she was getting. At 4 feet and 11 inches Toni had ballooned up to 210 lbs.
The proprietor was not around nor did she work there rather she collected the checks and put cheap and untrained babysitters to watch the girls. I demanded her phone number and immediately called her to discuss relocating my sister. She deflected my conversation back to regional center and said there was nothing she could do about it.
Regional center would not even discuss the issue with me. They refused to cede anything to me since I was not her conservator. Even being a legal guardian or family afforded me no say in the matter. I kept pressing and pressing the issue with her case manager but nothing became of my efforts. It was grim visiting her. Her weight continued to climb, she became lethargic and having to continually refuse her pleas to take her home with me was very emotionally trying. I requested to have her moved to the peninsula but once again, I had no power and no role. She was a ward of the state and the management and direction of her life were left to bureaucrats, who had nothing to do with her nor even know her.
I was recounting this story with a friend of mine who was a family attorney and he suggested that I get into court and request that I be appointed her conservator. I had met many parents over the years who had failed in getting that appointment but my attorney believed that because I was a brother and very involved that I may have a better shot at it. He filed the necessary papers and on the scheduled day we appeared in Alameda County Court. My sister was seated at her table with her court appointed attorney representing the State and my attorney and myself sat on the other side.
When called forward to the bench my attorney and I stood before the judge while he made the case for handing over conservatorship to me was a difficult one to justify. My attorney pointed out that I was not requesting economic conservatorship just authority over the "body". He pointed out how long and how often I have been her only family member to look out for her interest and how many times in the past I interceded on my sisters behalf.
The judge advised me that this was a serious issue as Toni would not be living with me and I would be solely responsible for all her medical decisions, her living situation and her care. I was untrained in caring for disabled people, had no resources and in his past experience well intended family would eventually disappear leaving her without anyone looking at for her.
"I hope you understand Mr. Mclalan that the state cannot make a decision for her unless it is a medical emergency and you are not available. If you fail to execute your responsibilities the State can and will pursue legal action to regain conservatorship. You will have to be involved in all aspects of her life and be her representative. Are you prepared to do that?" "Yes I am your honor."
I stood quietly listening to him until he called Toni to the bench. She was escorted to the bench by her attorney but when released she walked over to my side and stood next to me. The judge looking down at her started slowly to explain to her what was involved and when he reached the question "Toni. Do you wish to have your brother take care of you and be your conservator she took my hand in hers and said" Heismy brudder. I luvmy brudder". The judges face was clearly moved and his decision to award conservatorship to me was approved.
By now I was married and had a daughter. I had a successful investment business and was active in other organizations. At times I felt overburdened by my responsibilities and Toni in particular was always a random one. Feeling the weight of it all one day, I asked a friend of mine why was I the one taking care of her? I was just her brother. She responded by asking me what reason do you think you do it?
I said "she is my sister. I do it out of duty."
She looked and said quietly "No. I don't I think you do it out of duty. I think you do it out of love"
I was stunned. I asked myself if I had the capacity to be that kind of man? How could love play a part? I barely knew her. It was a one way relationship. She never once thought of me when she ran away in the middle of the night. She never thought "Oh it's Bob's birthday. I should give him a call. The answer my friend gave would not be understood for a long time.
Over many years people have told me that they respected or admired me for taking care of my sister. Invariably, they would say that they could not do that.
I would give them all the same response. "if you were standing in that reception area at Agnew's with a little girl tightly wrapping her arms around your legs crying for help" you would do the same thing. Walking away would be inconceivable. Was it inconvenient? Show me a relationship that is not. Self sacrifice at that age was not a quality I aspired to let alone understood. I just wanted to help her and if I knew at the time what it would involve and how many years perhaps I would have made another decision. No different than going on date that leads to getting married, having kids and taking care of people for the rest of my life. I didn't see that coming on a first date but kicking her aside and heading to the city for a party and leaving someone who needed me. I saw nothing noble about getting involved. I kept telling myself that if I could get her here or get her this that I would be able to resume my life. What took me the longest time was realizing that Toni is a part of my life. I was running to her not away from her.
I just couldn't walk away after seeing her in this place and remembering what happened to her as a child without trying to help her in some way. Each promise I made to see her pulled me in deeper and deeper. Each time I saw her getting the short end of the stick the more I stood up for her. I could not just drop her off and leave as if she never existed. Unlike my brothers who was infants when she left I knew she existed. Secretly, I admitted to myself that is just what my parents did in Porterville that day we dropped her off at the hospital. Maybe that is one of the reasons I chose to get involved.
When you get a person to person collect call in the middle of the night from Toni you know something is very upside down. I answered the phone and the operator asked if I would accept a collect call from Toni? Completely bewildered I said "yes" and instead of my sister a man's voice asked
"are you Bob? Are you Toni's brother?"
"yes, who are you?
"I am a friend of Toni's. She wants to talk with you."
"Immediately after she got on the phone, I was greated with apologies and sobbing from Toni. "Imsorrymy brudder, Imsorrymy brudder"
Toni where are you? Tell me where are you?
"Imsorrymybrudder, BobImsorry"
"Toni put that guy back on the phone. Calm down and get the guy who called on the phone."
"That's right get the guy back on the phone."
The voice returned and I said where are you?
He calmly replied "in the San Jose in the locked psych ward"
"Well who are you?"
"I am a patient here. Been here a few days'
"How did you get my number?" I asked.
He told me that Toni gave him my picture with my phone number on the back and pointing to the phone got him to call me at 3 AM. He said they brought her in around 1 AM and were holding her in the ward. They found her in Fremont and brought her here. He said she want you to come and take her home."
She had run away again.
What could I do? Leave her there?" I didn't see myself acting virtuously that night. I saw myself stuck with taking care of another crisis for her. Fortunately the police located where she lived and the staff sent someone down to pick her up and take her home. I sat on the edge of my bed wondering how did I get into all of this?"
I always made a point of bringing my children with me for all holiday events and excursions. The awkwardness of them being around someone who looked so unusual was visible. I would reassure them that she was my sister and as a family we have love one another or there is no point in having one. I know at times their discomfort was there but what they received in return was the gleeful excitement that Aunty Toni experienced when she saw them get out of the car. They weren't her children but she knew they were family. I believe my kids took different experiences from those visits but the one I know they all took was understanding that I loved my sister as I did them and sometimes God puts people in our life to develop and shape the way we express love and loyalty. To put it simply. "She is your Aunt and my sister and we will all do this together. That is how they learned in the beginning. After awhile it was just part of our family life.
It was becoming apparent to me that our relationship together was more than my just being a good boy scout. It was a commitment unlike any other that I had made in my life. I didn't want to take care of her but if she had no one to look out for her then the turns and directions of her life would left to the bureaucracy of the state. The state had a management system that was by now one in which I was all too familiar. They had their job to do and I had mine.
I reluctantly agreed to step in simply because I was destined to stand in the entryway at Agnew and meet her like I did. Whether it was what I wanted was irrelevant. She was my sister in trouble and I could immediately see how important it was to have someone to look out for her well being. If I didn't agree, I knew that no one in my family would pick up any responsibility for her and the quality of her life would rapidly diminish in neglect.
I never considered the state evil nor having any ill intentions but there was no question that a system so vast dealing with lives of people who could not care for themselves that ultimately the quality of life could be compromised. The State existed because no one wanted to take care of the disabled. To many, their deformities made them throw away objects. If it isn't perfect, it can't be mine and if it isn't mine then I don't have to take care of it.
Over the years I watched the State agencies become more efficient and accountable in providing care. The level of professionalism rose each year.The activities programs, the behavior programs started to develop Toni into well mannered young woman. My interest in my sisters welfare became aligned with the State agencies and rather than be obstructed, I began to rely on the advice and direction that doctors, case managers, psychologists and providers could give me. As I got more involved I learned that I needed to be watchful and let the agencies do their job. I was not a case manager or a doctor. My role was not to run her life but to ensure that she had someone looking out for her interests with a personal interest rather a professional one. I showed up when things went wrong.
It worked both ways. When staff or case managers had trouble with her, I would get the call. She was responsive to me and could tell by tone of voice or demeanor what was expected of her. I held her accountable. As her brother and a conservator I could do that when the state could not. It is easy to sit and write about all the bad things she experienced but that would be fiction with an unconscionable bias.
If I had not been a witness to seeing in my sister her basic humanity, I might not have had the necessary fortitude to get this involved. She was a person after all: not a statue. After seeing the person inside the misshapen and imperfect body with all her diminished capacities, I could not walk away and leave her behind. She would know. She knew what my parents did and perhaps that is why they didn't come back or get involved. If it were me I know I could not live in peace with a witness. The consequences for my conscience would be devastating. She was a human being who bore many physical features and characteristics of my family. Knowing full well what the alternatives were if I didn't help her, I found myself committed.
I began to reflect back on the comment about love that my friend made. I could see that the gift my sister was giving was another basic component in the condition we call love. How well I take care of someone or something is a measure of how much I love it. I learned to value what I take care of because the work and effort that goes into it makes it precious.
I used to complain that everything with her was a one way street. That I was taking care of her that was it. I didn't see, that to my sister I was her brother and someone she could count on. Somehow she knew I was a lifeline that brought her away from the hospitals and warehouses into the world of family and fun. She was happy and healthy and though those were the outcomes I wanted, I recognized that in her own way she wanted them too. All people have an innate sense of needing to be love and loved in return. My sister would demonstrate her love for me with my picture.
Every activity center, every event or new program, I would show up to check it out and visit her. Immediately, the first person I would meet would say "You must Bob. You are Toni's brother." I always asked "Have we met? How do you know I am Toni's brother" and the answer was always the same.
"She showed me your picture. She shows it to everyone. We know about you here".
I wasted no time in directing the regional center to immediately move Toni back to Fremont to a lovely neighborhood.
The one they picked however had some hidden serious problems. One night after midnight, I received an hysterical call from the proprietor declaring that she hasn't done anything wrong. I tried to get her to calm down and explain to me what was going on but all I could get out of her was that the TV cameras were over the place and the state took my sister and all her clients away and shut her down.
Repeatedly I tried to extract some facts but she was beyond reason. All I could get was that the State had come in the middle of the night, closed her down and took all her clients to other facilities. I never did find out what happened but I was grateful that the regional center did and moved quickly to get her out of there. If it had been left to me I would not have seen anything wrong when I toured the place.
First thing in the morning, I was on the phone with the regional center trying to get information on where they took my sister. I kept reminding them that I had a court order appointing me as conservator and as such they were obligated to provide this information. I was unsuccessful in obtaining it.
Later that morning I received a call from a place called Serra Center informing me that Toni was placed there and that she was doing fine. I took their address and hurriedly went over to Fremont to see her. I turned off of Washington Boulevard onto a palm tree lined lane that gently sloped up a hill. It was a serene and impressive place. At the top of the hill standing in the center of the circle was a statue of the Virgin Mary holding her child Jesus. I stopped and looked for a few minutes and though not a very good Catholic, I took it as a sign that my sister was destined to have a home like this.
I felt comforted and as I looked around the grounds I could see cottages in one area that held perhaps 100 developmentally disabled people.
"This is it". "I like this place".
Toni was placed in a large house that was adjacent to the cottages. Walking around the house with her she showed me her bedroom. It was hers and for the first time since I came into her life she had her own room. Standing in her bedroom I noticed the suitcase on the bed. All that she possessed in life could be contained with the space of that suitcase. I could buy her nice things but she would lose them. Most often they were stolen. I could not put money in her account so she could spend it as the state would have reduced her SSI if she was receiving support money. I did buy clothes, necessities and music or devices to play it on but in the end I would notice that they were gone. Her most permanent possession where her photo's. She had her photo's already on her dresser. Pictures of her brothers and of course Elvis and Michael Jackson.
I met with the staff who told me the history of the place. An order of nuns had purchased 22 acres in the hills to provide care and housing for unwed teenage girls. They sold the property to a group of parents who wanted a community for their child that offered more freedom than a group home and was closer to the peninsula where most of them lived.
Toni was busily engaged with the staff playing games so I left and returned home. A couple days later I received a phone call from Serra Center informing me that Toni was being transferred to another facility. I asked why and was told that the emergency placement put Toni into a room of a client who was in the hospital and who was now released to come back to Serra. I simply said I do not want Toni moved.
"You don't understand Mr.McLalan there is no room for Toni here at Serra."
"No you don't understand. I am Toni's conservator and under the Lanterman act you can't move my sister anywhere without my permission and I am telling you right now you are not ever going to get it. Either you build an addition on the building or move someone out but my sister stays there. Are you clear. If you are not, I will ask my attorney to repeat the law to you. You are not moving my sister anywhere. She has bounced around and lived in the worst possible places and now she is staying in one place: a place that I approve of.
"But Mr. McLalan, this program is a high level behavior modification one?'
"Really? Have you read my sister's case history? If not, then I suggest you do and if you really believe that she doesn't qualify, you call me up and say so and I will give your request to move her some consideration but for now, and until I say so, she is not be moved."
During repeated trips to meet with the case manager and staff to develop Toni's new behavior modification program, I noticed how lethargic she was becoming and how her demeanor and responses had the symptoms of drugs and narcotics. I asked for the list of her prescriptions and took them home. Investigating each one, I could see how many of them were psychotropic drugs. Looking at the medical reasons and the impact on her body it was apparent that the her behavior had been managed by maximum doses of these every powerful drugs. Isn't that what drugs do: Modify your behavior? That quickly explained why she napped for so long or was barely conscious sometimes during the day. I understood immediately was had been going on in her life for many years.
Toni would often find herself doing something until redirected by staff or other clients. On one occasion a report was written that she had to go to bed while watching a program. When she refused the staff turned off the tv and she protested. Becoming uncooperative and belligerent. With no way to represent herself, the psychiatrist would rely on staff reports made by minimum wage night workers to determine the dosage and drugs needed to modify her behavior. Eventually, with enough narcotics antipsychotics, anti depresents other psychotropic drugs in her she became very compliant. She became the model patient, stumbling along, led by the hand by staff, off to a couch or bed to sit in a haze and stare until moved again. She also became, torpid,docile, semi conscious, overweight and comatose. This one sided diagnosis was a self perpetuating one way trip to becoming medicated so much that you are barely able to function.
Other than seeing her during a routine visit to the center, the psychiatrist would then describe more drugs. I discussed this with the center's nurse and told her that I wanted to speak with her psychiatrist and to have her medications reduced or justified. He refused my call. I informed the nurse to tell him to be prepared to answer them in court as my attorney will be calling to file a suit against him and the center for both improper medications, prescribed without seeing his own patient and for failure to comply with state law dealing with the powers of conservators. Quickly, the nurse responded to tell me that they would reduce her medications slowly over the next six months and would continue to reduce them to zero unless something occurred that would require them to stop.
I agreed. After six months my sister had regained a very high level of activity, lost weight, looked great and was very engaged. The amount of psychotropics over that six months went to zero without any complications. I learned a lot from that experience. It would not be the last time that I would disagree with her doctors. I had reached the point that the state, staff or physicians no longer could count on my cooperation until enough information was presented, I had done my own research and a second opinion was available.
To ensure that I was in a position to keep an eye on my sister, I took a position on the board of directors at the request of the parents association. I was quite surprised to see how poor our financials were and how may cracks to employees we had leaking money in their pockets. Money which should have been spent improving the quality of care went to excessive overtime, contractors who worked drew salaries from Serra while performing work at the center. Mismanagement of money deprived the residents many of the amenities that State was paying them to do.
The course I set upon was to get a seat on the finance committee and to eliminate bad managers and practices but I found myself obstructed by local professionals who volunteered to help the center. To them I was an outsider. Their opinion was that I was a heavily prejudiced family member and didn't understand the importance of local business men who had Serra centers interest at heart. In other words I operated with a different agenda. Thus it would require far more work to root out our self interested lawyer and business men who wanted nothing more than to sell the 22 acres to a local real estate developer and move these people out of the bay area where land was cheaper.
One day we had a closed board meeting to listen to a representative from the state on requirements for providers in dealing with the sexual activities of our clients. Remembering my sister from her younger days, I was quite anxious to hear what our requirments would in regulating sex among the disabled. It was at this meeting that my earlier suspicions were in fact true.
She was a high energy, cute, and early 30's professional who with a lively approach began to inform us of the law regarding sex between clients. The state required us to provide privacy to those clients who wished to have sex, whether they be alone, with a member of the opposite sex or the same sex. The state emphasized protecting the sexual rights of these adults was essential in recognizing their humanity and attraction to each other. This was a time that I was glad to be a brother and not a parent. I laughed when I thought of how well this presentation would go when she did it the following night to the parents association.
I wasn't concerned about it all. It would not have been my wish to deprive my sister of a basic human need. I knew at 40 she was still a virgin and though she could get pregnant, the likelihood was small. Second, by now high functioning developmentally disable people were getting married and if they had children, Down's Syndrome was not passed on. It occurred in 1 out of 100,000 births.
Other than protections against staff and family members the state left it pretty much as a matter of choice and as a provider we had to ensure the privacy and freedom to protect it. This meeting put to rest the question of my sister's attention to men as just being affectionate.
During an interim stay at a home before moving to better facility I had not seen her for six months. When I did she was always sleeping and passing out during the day. The signs were the same from the excessive drugs that were prescribed by her former psychiatrist who did the world a favor by retiring. I made some inquiries and was told by the psychiatrists that she had taken over the former doctor's practice and had not met with Toni. Her decision to increase the levels was due to the reports from staff of Toni's violent behavior.
I asked the doctor how could she make prescriptions simply based on reports from minimum wage staff who often used drugs to make clients more manageable. She provided me an inadequate answer by referring to an incident where Toni had violently struck another client. I asked how violent could a 50 years developmentally disabled woman be? She was under 5 feet tall and now weighed 170 lbs. In short, she only promised to review her notes but would not change her prescriptions nor meet with Toni.
A short while later Toni ended up in the hospital and when the doctor called to tell me of her condition, I asked him if would he answer some questions that I had regarding her prescriptions. He said he would not make any changes but would do his best to answer my questions. I asked "is it common to have a patient on two antipsychotic drugs.
"No."
"Am I correct is saying that the dosage level of each is at the maximum?"
"Yes"
"Is the level of her antidepressant at maximum dosage?"
"Yes."
I asked about some other tranquilizers where were purportedly prescribed because she had seizures.
"Yes, she did have seizures in her medical history but the dosage and was at maximum levels.
"All and all Doctor do you think all of these drugs excessive?"
"Yes, I do and the dosage levels are very high."
Her psychiatrist now discontinued returning my calls. On Christmas day I went to pick Toni up only to find her passed out on the couch with saliva coming out of the side of her mouth. She was all dressed to go. Wearing her down winter coats, knitted Christmas scarf and ski cap she out cold. Her eyes were blank and dull and she was immovable. I tried to get her to sit up, but limp and unconscious she feel back on the couch. The operator of the house told me that Toni slept all day from the moment she took her medicine and then she would be up all night. I exploded and called the cell number of the psychiatrist who foolishly answered the phone.
I demanded that she get over here to see the result of her prescriptions for a patient she had never met. She refused and defended her legal position and hung up.
I would have another go around with the regional center who refused to change my sister's psychiatrist. I had finally had it. I called up her case manager and asked her whether or not as a patient if I have the right to refuse a doctor's recommendation of a prescription?" The answer was yes.
"If Toni could speak for herself does she have the same rights as any patient?
"Yes"
"And since my sister is in no condition to speak for herself aren't I, as her legal conservator and advocate to be the one to speak for her?"
"Yes."
"Then as Toni's conservator, I am telling you that Toni will no longer take these any of these drugs."
There was a long pause before she said "that could be dangerous."
I said that may be so but she is in a dangerous condition now and her psychiatrist is doing nothing about. You tell your head psychiatrist that I going send a letter instructing her that as Toni's conservator she is going to discontinue taking these antipsychotic prescriptions.
She told me she would call me back.
A short while later she called and informed me that after speaking with her legal department that I have to right to refuse on her behalf a prescription but I cannot pick and chose which ones or change dosages because that would be practicing medicine.
I said "Then tell them my decision will be that she not take any prescriptions at all."
She asked once again to call me back.
This time she called to make an appointment with the head of psychiatry to discuss Toni's case.
When I arrived at the office Toni was already there passed out on her couch. We sat across the table and she very gently and carefully took me through the prescriptions and the rationale. When she finished, I asked her while pointing to my sister "look at her. She is 55 years old and passed out on the couch. Tell me doctor, is my sister psychotic?" She looked over at Toni with saliva coming out of the side of her mouth, her face swollen from all the weight she had gained while taking all of these drugs.
"No" she replied.
"then explain to me why she is taking two anti psychotic drugs at maximum doses and that one of those drugs is being investigated by the FDA and is the recipient of numerous lawsuits for being ineffective and dangerous."
"Let me ask you this: is my sister depressed?"
"Her records don't indicate that."
But she is on antidepressants. How would you know she is depressed when she is incapable of explaining how she feels? Is the prescription based on intuition or perhaps the conclusions of the staff? If she is unwilling to get out of bed or sleeps long hours or is anti social could those symptoms be the side effects of the more powerful drugs?
"Yes."
Then I restated my wishes that unless she replaced her existing psychiatrist and be willing to take her off those drugs or that I would do it myself and face the consequences. It seemed the only way to get attention was to escalate the disagreement. I pointed out that she only took one drug for her arthritis and one for seizures which I pointed out I have never seen her have one or be notified that she was subject to them in over 30 years. All the other medications were strong psychotropic medications.
She cautioned me against changing or selecting one drug over the other as being dangerous. I fully agreed but to stay with the prescriptions she was taking was also dangerous. I had no intention of giving up any of the leverage I had as conservator and told her that I would discontinue her taking any medications whatsoever unless she got a new doctor, a reevaluation of her conditions and a reduction of the medicines immediately.
She agreed that my argument about the number of drugs and dosages were excessive and she would be willing to scale back for six months to see how she would do.
"Let’s start to reduce the dosage and see what happens over the next six months."
"Starting now I presume?"
Yes.
"And the reduction continues to zero unless she exhibits a need for them." "Yes"
I stood up and reached my hand across the table and thanked her. I appreciated her help and cooperation. I was pleased to learn shortly afterwards that she assigned Toni as her patient.
The result was Toni lost over 40 lbs, was more communicative, lively and happy. It was like she emerged from this comatose body as a real person. The only medication she as left if for her arthritis and seizures.
After many years Toni was provided with a private home that gave her great care and attention. Of all the places that I traveled to with Toni none of them were as comfortable as this one. I would continue to visit her every quarter and by now all she wanted from me was a trip to McDonald's for a Big Mac, fries, a coke with no ice and black coffee. I used to laugh watching how carefully she unwrapped the hamburger and how she placed her fries next to the sandwich so she could eat them almost simultaneously. She had a special position for the coffee on her right side and the coke resided on her left. She had become very ritualistic in her habits and for a devoted fan of McDonald's this was her communion.
But it was at this time that Toni began to experience serious medical issues that eventually moved her to the home she is living now. I received a call from the hospital that Toni was in emergency and was going to be admitted for pneumonia.
Just weeks earlier, I had finished a series of meetings with brain surgeons about whether or not I approved having a shunt put in her head to relieve the fluid on her brain. Based on the advice of a couple doctors, I chose not have her under general anesthesia and surgery. She was already slipping away and I feared that further consequences could arise. My decision was in accordance with the recommendations of the specialist and the surgeon.
Now this new problem arose.While in the hospital with pneumonia, they discovered that she was no longer able to swallow. Her doctor called me to ask for a visit. In all the time I was involved none of doctors ever called me to sit down to discuss health her with me.
In his office, the conversation revolved around the questions of what provisions I had made about the level of resuscitation should she experience heart or lung failure. I told him that I did not want any extraordinary steps taken. In talking with me about this subject the word that kept coming up was feeding tube. I stopped and asked what about a feeding tube? He told me that it is likely that Toni would need one to continue nourishment for the rest of her life and perhaps it is best given her condition that she not receive one now.
It took me some seconds to understand what we were talking about. I asked him are you suggesting or recommending to me that she not get a feeding tube?
With great hesitation he went on to explain how at the end of life at some point it has to be removed to allow the patient to die.
I said "are we talking about a Terry Schiavo situation here? Are you asking me whether or not to feed my sister to avoid prolonging her death? Are we at the end of life here today? What general health problems does she have now? Is she dying?"
"No."
"Then if I refuse the feeding tube how long will it take before she dies? How long does it take it to starve someone to death. A week a month?"
"You don't understand. Your sister is not swallowing which requires special care and she is no longer mobile. A feeding tube is not going to add to the quality of her life."
I was amazed at the conversation. I said "leave the end of life instructions as I have given. You get someone else to put in a feeding tube in her and John will arrange for her to be moved to a facility to provide for her care."
Then I walked out.
She is now bedridden but well taken care of in a beautiful home. She has had the feeding tube for two years now. The care at this facility will take her to the end of her life. I have arranged for all the details to have her share a plot with her mother but other than being bedridden, on a feeding tube with lots of bed sores she is still going strong. She no longer recognizes me nor even needs me. She has long since stopped recognizing me though she would respond to my voice up until a couple years ago. I saw her a couple months ago and I knew this could be the last time. But I have told myself that many times and a call always comes and I always respond. She is 66 now and her heart is healthy. The story is not over yet by any means.
She is over 100 miles away and well taken care of. Before leaving I took a minute to see in her face her father's forehead, the shape of his brow and the unmistakable thick gray hair ending on her scalp exactly where her fathers did. I looked at her thumbs and saw her mother and brothers. It was not the time to reflect on all the years we were together nor the many lessons about life that she taught me. That day was moment to realize that other than some administrative details to take care of I felt I gave her my best. I kissed her on the forehead and said goodbye.
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