Conservator - A Thinly Veiled Horror Story

con·ser·va·tor

kənˈsərvədər,kənˈsərvəˌtôr,ˈkänsərˌvādər/

noun

1. a person responsible for the repair and preservation of works of art, buildings, or other things of cultural or environmental interest.

   • US

     a guardian or protector.

     
     

     "the court does not need to appoint a conservator to handle an incapacitated person's affairs"

I am Sophie's conservator. Every two years, the government checks in on our relationship, which is as it should be, I guess, although the whole process is akin, figuratively, to getting stabbed in the heart. It's the same feeling as listening to the robo calls from Sophie's LAUSD high school that describe the various senior year festivities and activities. Sophie has been a "senior" for over three years, yet she won't be going to college day or career day or military sign-up day or cap and gown ordering day or prom day or -- you understand the drill. If my imagination were a work of art, I'd say that as its conservator, I let things roll, I elaborate, I preserve --

It is what it is, as they say.

Yesterday, a worker from the city came to our house to interview Sophie to make sure that she still needed a conservator.  She was terrified of our dog Valentine, the goofiest poodle on the planet but otherwise a mild enough sort who immediately greeted Sophie. The dog greeted her and the worker greeted Sophie, that is. After she finished asking me a bunch of questions about Sophie's needs and medications and doctors and health history and educational status, she told me that she needed to ask Sophie some questions. I raised my eyebrows. I had kept Sophie home from school for the meeting, and she was sitting in her wheelchair humming. If you're a new reader to the blog, Sophie doesn't hum songs. She makes a steady monotonous sound through closed lips that is at once an expression of agitation (meaning she wants to get up and out of the chair and go outside), of discomfort (of what I have no idea) or perhaps just of a self-stimulating nature that feels good. Depending on my mood or where I am in the caregiver cycle, the sound can make me feel alert to alleviating her discomfort, amused (I have my tolerant side), agitated (okay, CRAZY) or indifferent. Yesterday, I felt amused by Sophie's insistent hum yet my heart throbbed from the ax that the worker had metaphorically thrust into it.

I'm a conservator, a person who guards and protects my adult daughter. I'm also responsible for the repair and preservation of a work of art -- my imagination, I think. A thing of cultural interest.  My writer mind. I listened with amusement to the questions so earnestly asked by this cheerful, bland woman.

Sophie, do you know who you are?

Silence. Hum.

Sophie, do you need an attorney?

Silence. Hum.

Sophie, would you like to vote?

Silence. (I might have interjected here over the hum with my own answer which would be Yes! And hopefully get the asshole and his band of billionaires out of the government!)

We tolerate these things, we conservators.

The worker turned to me, still earnest yet apologetic. We have to ask these questions because there are those who would take advantage of people's disabilities. I told her how much I appreciated that care and attention. I meant it. She stood up, and I stood up and she handed me the paperwork and I put one hand on Sophie's head as the worker said good-bye. Then she said, Plus, you never know! Sophie might wake up one morning and start talking and recover!

Reader, it was then that I removed the ax from my own heart and brought it over the worker's head, cleaving it in two. 

Valentine sniffed around a bit and smiled and Sophie hummed.

Conservatorship, Part Five

So, it's done. The Husband and I took Sophie downtown yesterday morning and waited with many other families before filing into a small courtroom where we waited some more for our turn to stand in front of the judge, raise our hands and swear our truth. We sat quietly and listened while a grandmother petitioned to become the guardian of a fourteen year old girl. The girl's father objected, and there was some intense back and forth between the man, the judge and the girl. The court security guard stood up and walked over when the father pulled papers out of his bag and then pushed them toward the girl and her lawyer. It was hard not to notice the gun. A large young man with Down Syndrome stood between his mother and father, his arms thrown around their shoulders, a huge grin on his face when the judge pronounced them guardians. Throughout the entire proceedings, I heard the most horrific clicking, grinding noise coming from behind me, althernating with screeches, and I strained to not look back. At some point, a young man in a wheelchair was pushed up the aisle toward the judge. He was small and shrunken in his chair, rubbed his hands together over and over and ground his teeth so hard that I closed my eyes, imagined my hands on either side of his small face, willed it peace. Sophie hummed and shifted in her own chair, the judge was respectful and greeted each conservatee by name, both when they entered and when they left, was almost sweet in mien.

I realized that in the not so distant past, all of these young adults would have been chained to beds in institutions. I was grateful for the reams of paper, for the waiting and the officialese. I was grateful for the absurdity of all of it.

Eighteen years ago, on June 17th, I was in New York Hospital with Sophie in a room with six cribs and six sick babies. I sat in a plastic chair by a dirty-paned window and waited for the hours to pass, the nightmare to end. Instead, I learned how to inject steroids into Sophie's legs by practicing on an orange, the nurse cheerful in her demonstration. I pressed my nose on the nineteenth century glass of the parents' lounge and cried, my tears running off my nose and down the window. I waited for tests to come back, for reasons and answers to whys, the baby sleeping and crying and seizing in the metal crib, while I sat in the plastic chair and just kept waiting.

The papers have not been officially stamped and could take up to eight weeks to be delivered (wait for six and then call, our court-appointed attorney said), but we are now Sophie's official conservators, granted the seven powers of conservatorship.

So, that's it.

My main thought is whether I check the box next to the word Guardian or the box next to the word Parent - Mother on future official documents.

Does anyone know? I'll wait for an answer. I'm still waiting.

I've got the whole world in my hands

for Sara, Maggie and Sally

A couple of pieces of mail that were shoved through the door slot today looked as if they'd been chewed. I swear I saw teeth marks on the corners, and one was ripped.  Something had chewed off the corner of the confidential report of Sophie's conservatorship, submitted to the judge downtown. I sat on my bed and read the recommended seven powers that The Husband and I would "gain" upon the judge's decision later this month. Los Angeles is beautiful today, like most other days and despite yesterday's mayhem in Santa Monica, the sky is still blue and the bougainvillea riotously pink. The breezes are blowing even as sirens wail.  The Limited Conservatorship law recognizes the important principle that persons with developmental disabilities should not, on the basis of their disability alone, be deemed  unable to exercise certain rights, I read. The sky is still blue and the bougainvillea pink. It is not likely that she could respond appropriately to an emergency, such as an earthquake or a fire. Breezes blow and sirens wail.  I also received a copy of my poet friend Sara's new collection called Lake Effect, and opened to the world has broken blazing from a poem titled Tree of Heaven.  In another envelope was a gift for Sophie from Sally and Maggie of Maggie World, a beautiful necklace that spelled out DREAM. Again, given her significant deficits in communication, self-care and self-safety, the Regional Center recommends granting the power to consent or withhold consent to marry. If I were more beast than human, I'd chew the rest of it up, read only the poetry and swallow, a dream around my neck.

The Penultimate Stage of Conservatorship

The Conservatee

I say cool, and dig all jive,

That's the way I stay alive.

My motto,

as I live and learn,

is

Dig and be dug,

In return.

Langston Hughes

We had a visit today from a representative of our Regional Center who is required to file a recommendation with the court regarding our petition to gain guardianship of Sophie, now that she is eighteen years old. The visit went as smoothly as one would hope, given that we discussed what is called Powers Sought and the Corresponding Rights to be Limited. In the interest of educating readers, particularly those who will go through this process when their own child comes of age, here are the powers sought:

1. The power to fix the residence of the conservatee.
2. The power to consent or to withhold consent to medical treatment and to make decisions concerning the medical treatment of the conservatee.
3. The power to contract for the conservatee.
4. The power to access confidential records and papers of the conservatee.
5. The power to make decisions concerning the education/work programs of the conservatee.
6. The power to make decisions regarding the conservatee's social and sexual relationships and contacts.
7. The power to consent to marry for the conservatee.

There are few words to describe what was, at best, a pleasant conversation with the representative. The feeling I get when these sorts of things transpire is at once obliterating and grounding. 

In a couple of weeks, The Husband and I will complete this process and appear in front of a Judge with Sophie. 

A Saturday Morning List

1. The ladder outside my bedroom window and the boot right there at the top, where A Man is busy trimming the hedge between my house and The Neighbor's, prompted me to wish that it were Daniel Day Lewis' boot, the Daniel Day Lewis who played the main character in the movie version of Kundera's The Unbearable Lightness of Being. I believe his name was Tomas pronounced Tomash and he was washing a window on an apartment building, and he caught sight of the woman inside, and before you knew it he had climbed inside and then he had seduced the woman.
2. Anyhoo.
3. On the advice of a friend (one of my many drug mules who help me to ferry Sophie's meds from Canada), I have finally bought a copy of War and Peace and have decided to complete it by my fiftieth birthday in late August. So far, so good. I'm on page 14. 1021 pages to go. This is in lieu of losing fifty pounds by my fiftieth.
4. Anyhoo.
5. The Husband has a miraculous Saturday off, so we've already divvied up the baseball game duties. I'm signed up for the noon game with Oliver.
6. Sophie is on her third or fourth day of a liquid strike. We don't know what's wrong with her, and it's difficult to shake water and juice into her resisting mouth. We took her to the doctor and nothing, apparently, is wrong. She has no infection in her ears, throat or mouth, that the doctor could see. She has no fever. She has, evidently, a $220 virus. I've gone through the stifled panic that I usually go through when Sophie isn't feeling well or acting "normal," where I imagine that it's the beginning of the end for her. I woke up this morning, though, feeling not so great myself, so I'm excited that perhaps it is indeed a virus and not that some new neurological complication has begun and the next thing you know we'll be having to have a permanent IV line or feeding tube and the seizures won't stop, etc. And you thought I was so calm, so amazing, right?
7. Anywho.
8. I spent four out of five weekdays off-kilter due to potentially stressful activities -- the removal of my stitches, the SSI meeting, a job interview and the conservatorship meeting -- and each one went as well as it could go. I believe that calls for an open thanks to the universe and all those who made it happen. I am grateful.
9. Now, if only Daniel Day Lewis would climb through my window, everything would be perfect.

Bougainvillea, Conservatorship and The Ministry of Silly Walks

I yanked my car hard to the right, parked it and jumped out to take this photo. Pink, shocking pink paper -like bougainvillea against a blue sky. I just drove back from Pasadena, where I attended another conservator clinic. The foundation holding these clinics and helping us to gain guardianship of Sophie is incredibly efficient and well-organized. It's also free. Praise the good lord on that one. The universe is abundant. Basically, we're given a folder with stacks of paper, documents that we have to go through and sign, one after the next. When we're finished signing, we're told where and when to show up next. The people sitting around the table are Hispanic and Vietnamese, African-American and Australian. We all have a child, recently turned eighteen ,who for various reasons cannot make decisions for herself, and we all share the rueful smiles and sighs that those caught in interminable bureaucracy learn to sustain themselves. No one argues when the elderly volunteer woman tells us not to open our packets until she tells us to do so. The Husband, Sophie and I will make our court appearance in June, but before then, Sophie must be served a petition, a stack of papers, basically, that someone over eighteen years of age must hand to her. Literally. The elderly lady demonstrates this particular course of action with a young man in a wheelchair in the room. She takes the stack of papers, says the boy's name -- he is busy, twirling, twirling, twirling a small piece of paper -- and places the stack in his lap, where it rests for a moment before the young man brushes it lightly with his fingers. The lady next to me looks confused and turns toward her interpreter. I imagine her culture prevents her from grasping the irony of the situation, and I imagine the interpreter breaking through irony to express the literal. You must have another person, over the age of eighteen, hand the documents to the conservatee, the elderly lady states again, and the rest of us nod our heads. That person must then fill out this document, she continues, and we all flip through the next carefully clipped set of papers, and mail it back with this envelope. 

The clinic takes little more than an hour, and we each leave with a manila envelope stuffed with papers. My anxiety about this process has turned, quite dramatically, into resignation and even amusement. To tell you the truth, I'm actually looking forward to asking one of my friends to serve the papers to Conservatee Sophie. I intend to be the Minister of Silly Walks when it's time to drop that set into the mail.

Conservatorship and the Boddhisatva

I drove to Pasadena this morning for the second meeting of the process of conservatorship. For those of you not in the know -- isn't that a weird phrase? -- since Sophie turned eighteen, The Husband and I have to formally apply to the state to become Sophie's guardians. The process involves, basically, stripping her of her rights to make life decisions, including medical, sexual, partnership, etc. for herself. Fortunately, there's a wonderful organization here in Los Angeles called Bet Tzedek that runs clinics and helps you to do the necessary paperwork, reams of it. The people who work for Bet Tzedek are extremely helpful, sensitive and caring individuals and make the whole process a piece of cake.

Well, maybe not a piece of cake. Given the strange and wondrous workings of my own brain, my take on the process is perhaps more perverse than cake and I periodically have to yank myself back into the present as I check off boxes, date pages and sign my name. I sat at a little table in a busy courthouse building with five other people each doing the same thing while an elderly lady walked around peering over our shoulders, a handy bottle of White-out (have ya'll seen the new White-out because I hadn't and it's magical!) in her hand to erase errant marks and typos. There was a Vietnamese couple across from me, applying for twins and next to me sat an African American man applying for conservatorship of his second child. Next to him was an African American woman in a wheelchair and next to her an Hispanic couple, with myself rounding out the Syrian/Italian/Scotch English ancestry. We were a veritable kaleidoscope, and all of us there for the same purpose! On about page 657, each of us read and checked for accuracy a paragraph describing our children's limitations which had been drawn from a questionnaire that we had filled out on the first visit. The paragraph about Sophie listed, literally, everything that she could not do, and let me tell you, Reader, it takes some serious dissociation to read that list for accuracy and sign your name with a flourish. She cannot clean herself. She cannot use the bathroom. She cannot talk. She cannot take her medication safely. She wanders and is confused. Etc. Literally, everything you can think of.

That's where my wild and wonderful brain steps in for my heart and does circus gymnastics alongside the other members of the rainbow coalition around that table in the courthouse in Pasadena.

Afterward, I wandered about the beautiful streets of Pasadena and into an Asian museum that was completely empty of people but whose rooms were filled with cases of ancient Bodhisattvas, their thousands of years old faces staring serenely out at me in my circus garb. I stood for a long time in front of the one above until my costume fell away, I wriggled out of my leotard, kicked off my big red shoes and stood there, naked, my heart beating steadily in the dim light.

The day after the day I rested

I dragged myself out to Pasadena this morning and began the proceedings to formally divest Sophie of her rights as a self-determined individual and become her guardian. I am, evidently, a "self-represented litigant" in this process and had the great fortune to be referred to a wonderful organization that will help me along the way. I filled out the beginning paperwork this morning while coughing discreetly into my upper arm and felt almost grateful for not feeling fully up to snuff. Had I been my usual feisty and iconoclastic self, I might have had reason to see irony in every sign that crossed my path and every box that I checked. Should I check YES or NO as answer to the question Does conservatee wander and get lost? Or how about Is conservatee confused and forgetful? We won't even get into Is conservatee able to make decisions about his or her sexuality? I thought for a split second about the women in North Dakota and Mississippi, and how their rights to reproductive freedom are not just being chipped away but, rather, hacked at the roots, while an hours old embryo is perhaps going to be considered a person there. Way to go Mississippi and North Dakota -- so very advanced of you. Such is the way my mind generally wanders and it might have been for more than a second if I hadn't felt so run-down from this dang virus. In any case, I finished my appointment and then drove back home where I walked around in circles in my house for a few minutes and even attempted to reach Medi-Cal for direction regarding Sophie's Drug Acquirement Troubles. If you can believe it, when your identification number has a LETTER in the string of numbers, instead of just pressing the corresponding number on the phone you have to do this convoluted thing where you press STAR and then the corresponding number and then STAR again and then a number that says which number the LETTER comes on that button. I'm not kidding you. That's what the lovely Medi-Cal voice tells you to do, and you know what? I couldn't figure it out. I started to cry a little and then giggle a little and then I realized that I need to get back into bed and watch some more episodes of House of Cards. So that's what I'm doing.

Sophie World

I got this photo today from Sophie's teacher with the following email:

After a very long walk, a community trip and a cooking lesson, Sophie is just plain sacked out!

Sometimes I worry about Sophie at school -- well -- not sometimes, but more like nearly all the time. We parents of children who are non-verbal and/or completely defenseless in a myriad of ways take a certain leap of faith -- some might call it insane -- when we drop them off for six to eight hours with strangers or entrust them to school-assigned nurses and aides. While I've actually learned to at least understand the merits of the medieval chastity belt, I do believe Sophie to be safe at school, and I know that her teacher and aides do a bang-up job teaching and caring for a diverse group of special education students. My expectations for the gigantic morass that is the Los Angeles Unified School District are definitely zilch, though, and I've long let go of the legalese in Sophie's IEP, even caring whether or not her "goals" are being reached. There's only so many years when learning to feed oneself with maximum assistance is something for which to fight tooth and nail. What I'm grateful for, though, are these snippets of her life there that her teacher periodically sends me. They reassure me that Sophie has a life at school that is rich with activities and friendships and care.

Tomorrow, I'll be attending a workshop on conservator/guardian issues. Sophie will be eighteen years old in March -- good lord! -- and it's time for her to go out on her own and make her way in the world.

Just teasing. I'll no doubt learn about how to become her guardian without exploiting her rights as a human being. Stay tuned for what I imagine will be some Monty Pythonish moments as I navigate yet another system. I'll end here with a clip from a movie that my friend Jeneva recently posted on her FB page in anticipation of her son's IEP. I think it pertains to the parents' perspective dealing with any of the systems we encounter (insurance, medical, education, social, etc.). And it made me laugh out loud.

Gertrude Stein, IEPs, Conservatorships and Books

I'm doing laundry and researching conservatorships. Sophie turns eighteen next March, and I have to divest her of her rights, basically, and become her guardian. Sigh. I'm also preparing for her IEP is this Friday morning, and her teacher asked whether I wanted her to be there. I told him that no, IEPs are always about what she can't do, and I don't want her to hear that. I also don't want to fill what peaceful, hard-working spaces are left in her brain with the educational jargon the IEP demands. Those of you in the know, know what I'm talking about: achieve 65% success with 92% accuracy and 50% prompting. When this involves using a spoon to feed yourself, you get my drift. I'm also listening to a cool recording of Gertrude Stein from 1934, where she chastises the interviewer on what it means to understand a text. I loved reading Gertrude Stein in college -- read nearly everything she wrote and relished the weird cadence of her language, the koan-like nonsense. Evidently, my enjoyment presupposes understanding, and in this one wonderful interview, Stein affirms what I've always believed and never articulated: either you like a book or not, and the liking is the understanding. I wish I'd known that when I labored for hours in an all-male book club in New York City, nodding my head in deferment to wiser minds that appeared to understand but not enjoy. In another life I was married to a PhD student in English literature, and I remember suffering through interminably boring get-togethers and parties where graduate students spoke of literature with verbal gymnastics that made my head spin (I was always a terrible athlete) but never of liking something or disliking something, of joy or its opposite. Do these people even like to read? I asked my husband at the time. Maybe I'm just slightly off -- I've written before of my envy for Gertrude Stein, for her massive head and unattractive hair, for her seeming comfort in her own bulk and obtuseness. After five straight days of exercise and yoga, I can feel every muscle and sinew in my body, and they ache. Would that I were Gertrude in a voluminous black dress, sitting in a salon with a mousy helpmate cooking something delicious in the kitchen, spinning words into stories that make no sense except to those who enjoy them.

Look here. Being intelligible is not what it seems. You mean by understanding that you can talk about it in the way that you have a habit of talking, putting it in other words. But I mean by understanding enjoyment. If you enjoy it, you understand it. And lots of people have enjoyed it so lots of people have understood it. . . . But after all you must enjoy my writing, and if you enjoy it you understand it. If you do not enjoy it, why do you make a fuss about it? There is the real answer.

(via brainpickings.org)

The dryer just binged, so it's back to folding clothes.

Reader, what are you doing today?