Alzheimer’s Is Helping Me Accept Schizophrenia

old-lady2To supplement my writing life I’ve started running a senior-care side business. One of my clients, Alice, has early-stage Alzheimer’s and lives in an in-law apartment upstairs in her daughter’s house. She just cognizant enough to be adamant that she doesn’t need help and just demented enough to go missing every now and then.

I’ve been going over there once a week under the guise of “dog sitting” to check up on Alice, try to get her to go outside, and maybe even lure her to lunch at the museum. So far, I’ve gotten inside her private enclave three times for a tour, been invited and uninvited to her summer house at the lake, and vaguely tolerated before being dismissed to the hall landing. Then I go downstairs and savagely sweep and mop her daughter’s kitchen floor, which really is a disgrace.

No prob. Every week it’s a new possibility with Alice. And I know full well from my experience with Sean that victory against mental illness is as fleeting as anything else. But there’s one thing I absolutely love about her Alzheimer’s. Every week Alice asks me if I have any children. And when I tell her about Sean and his schizophrenia her eyes light up: “Oh!” she says, “I have a schizophrenic son too!”

And she does. A 50-something son who lives in a group house in a city nearby from what I can glean. Sometimes she thinks he’s 30 and still in the psych hospital like Sean. Other times she remembers the present. But oh, Alice! Bless you, bless you. Every time we talk about our sons she tells me: “It will get better, don’t worry. Twenty-six is the absolute worst. My son wouldn’t speak to me for years either. It’s a phase they go through.”

Today we had this conversation three times as we walked her daughter’s two goofball dogs around the park. She couldn’t remember their names and I never learned them, so they were just Big Guy and Little Guy. “You just learn to live with the schizophrenia,” said Alice, tugging small doggie. “Nothing much you can do about it.” (She’s Canadian and thereby systemically unflappable.)

Little Guy rolled at her feet in the spring grass like a colt in a meadow. She watched him and giggled a minute before asking, “I wonder what he’s doing?” Then she turned to me afresh and said: “Do you have any children?”

Am I a spaz that I find this repetition so deeply comforting? Just the act of saying My Son Is Schizophrenic to a mother who understands fills me with radiant happiness. Each time I get to see her face alight with the discovery of our shared motherhood. And in every interchange she is invariably generous to me, encouraging me to feel hope and to trust in the long picture.

Maybe if we carry on this demented dialogue long enough I will come to believe Alice about the getting better part. And even if I don’t, I can keep circling back with her to the children we can’t forget, and remembering: I am not alone.

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Taking Refuge in the Appearance of Life

img_4194The snow is only fluttering now. It is large as goose down and I can follow a single flake from its appearance outside my attic window as it tumbles down to the slushy street. Cat asleep on daybed. Knitting project put aside momentarily. Within this small room, my study, a picture of contentment.

For this moment I take refuge in the appearance of life. Trying to believe that I, the inhabitant of this picture, am really here, am really a human being on earth. Because my soul knows better–it understands that I am a ghost. As is my son Sean in his far-off psych hospital bed who is still puzzling over the wrinkled reality that shot him to another planet.

My life tore on the day that my son in his paranoid delusion denied me as his mother, but it didn’t disappear. I had Sean to fight for and I did so ferociously. But time is time, and when wrestling with mental illness time slows down. My fight has slowed, my hope subdued. Each milestone I yearn toward opens up new pain.

A year ago, I fought to get Sean into a shelter only to have him refuse treatment and end up on the streets worse than before. I sent his father to find him and what he discovered was so wretched it nearly cost my son’s life. The LPS state conservatorship that we won was miraculous, and yet, the ensuing months of locked care have yielded few results. Sean lives a drugged, lonely life in a suspended state of what I can only imagine is merely adequate psychiatric warehousing. While it is so, and while he refuses all contact with me, I can never come home to myself. Part of me will always be whisped around him, embodying his disjointed sense of self with my own. It’s exhausting.

In two weeks I am planning to fly out to visit his treatment team and to try to make contact with Sean. My first time in California since my intervention two and half years ago. I fear for myself, what it will do to me to come face-to-face with his shabby surroundings and the inadequacies of this care. I remind myself there are good people there: His conservator is a beautifully attuned woman with a solid spiritual wellspring; his program manager downloads music for him and talks art and books. A man from FERC, an incredible Bay-area resource for families dealing with a loved one with mental illness, will meet me for support.

And Sean has lucky invisibles: The person who helps him wash. And brings him pills. And tries to lure him to attend groups. And serves him meals. And delivers the books I send under the guise of “county donations.” I pray they are kind to him.

I pray I will find kindness too.

 

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Save

Conserved!

Why do I skip over the biggest events here? Not for lack of courage I don’t think. Possibly because they have so many threads that are important to write about that I’d rather not begin until I can commit myself fully.

As the writer Anthony Walton once told me, “You can’t tell any story without telling the whole story.”

But yes! and yes! and my god yes! Sean was conserved. For every time “the system” has failed him, and us, and thousands of other families begging to get even a scrap of the help they deserve in caring for a loved one with profound mental illness, they got it right one time.

Of course, it helped that Sean didn’t even get out of bed to attend his conservatorship hearing. But I don’t expect that was what could be termed an active choice, more likely the unfathomability of putting on actual clothing, leaving the hospital and going into a courtroom to defend his life.

We don’t really know what a conservatorship will look like — will it play out in years of Cuckoo’s Nest warehousing? Will his mind actually begin to quiet and find some kind of healing? Will he ever allow his family into the picture? For every problem it solves, it answers no questions.

But he will not be living on the street.

Commit Him or Dismiss Him?

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“At the precipice of all that I’ve worked for, I no longer know what I’m waiting for.”

There are so many kinds of waiting that come with mental illness. Waiting for understanding. Waiting for help. Waiting for forgiveness, for signs of improvement. For doctors and caseworkers who slam the phone down. Waiting for a child who won’t let you see him. For the person you loved to emerge, unscathed, from the one who now hates you.

But there are worse kinds of anticipation. Especially from 3,000 miles away. Waiting for phone calls from policemen who have found Sean, or not. Waiting for hospital clerks to give you scraps of information before nurses HIPPA-up and hang up. Leaning into the bureaucratic silence as shelter workers and jailers and coroners search their list of names for the one that will make your heart stop.

Hardest of all, in many ways, is waiting for peace. It’s not so much that peace is fleeting; it’s just impossible. But that doesn’t stop me from deluding myself that I’ll nestle into it someday. I think it is what drives me to push ahead through cosmically absurd impediments to try to get my son help. It’s the closest thing I have to hope: the idea that through long-term psychiatric care Sean will have some kind of healing and that the collective family nervous system can begin to unwind.

This week the thing I’ve been waiting for is finally come. Through a Perfect Storm of intervention by shrinks and crisis units and conservators and hospitals (not to mention my ex-husband–yes! the bad one, who performed the greatest act of bravery I’ve ever witnessed in rescuing Sean from the street. Read future post!), Sean is going to mental health court for a conservatorship hearing.

Quite unlike the small victories of those 72-hour, or 14- or 30-day holds, this will determine whether he is judged sick enough to become a ward of the state for up to a year, and possibly more. Finally, finally a chance for Sean to get real psychiatric treatment instead of the Fun House of jails and shelters and sidewalks he’s been treated to thus far.

There’s one catch though, and it’s almost unfathomable. California’s General Conservatorship law states that if a judge determines his condition doesn’t warrant Sean  being a ward of the state, he will simply be released. RIGHT THEN. Commit or dismiss. No gray area, no resumption of month-to-month treatment. Just a “Vamoose baby, don’t let the door hit your wheelchair.”

At the precipice of all that I’ve worked for I no longer know what I’m waiting for. Justice? Mercy? Destruction? Shock? Oh, these days are long.

 

 

 

Losing a Child to Mental Illness

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“Our love doesn’t stop. It grows around the pain ….”

I had an idea when I started this blog nearly two years ago that I would be brave enough to take some readers on a journey with me to find my homeless son. And I did write it, I suppose courageously, up to a point. I found Sean, but encountered an utterly changed child–delusional, paranoid and ravaged by mental illness and a life on the streets.

In my last contiguous chronicle, I had succeeded in getting intervention by a mobile crisis unit and watched as Sean was shackled in People’s Park and loaded into an ambulance bound for a psychiatric hospital. There my posts ended. At the very beginning.

In the ensuing months, Sean has cycled through operatically horrific episodes of hospitalizations, incarcerations and homelessness. He walked into traffic and was hit by a car and spent 5 months in hospitals only to release himself Against Medial Advice. He is now in a wheelchair, nearly catatonic, refusing help of any kind. He is also in one of the best psychiatric hospitals in the Bay Area, where he is being “stabilized” after his recent admittance. He was picked up in an alley, sitting in his own waste, convulsing.

I couldn’t write about any of this. I just held my breath and blundered through. But I want to now. Maybe not so much the outward journey of negotiating the nefarious mental health system, but what it feels like as a mother to grieve a living child. I have discovered there are so many of us, often sitting alone in our own pain. Mothers whose children are lost to drugs. Or to husbands, or courts, or through anger. Children get lost through our own failings and for no reason at all.

Our love doesn’t stop. It grows around the pain, misshapen, and even strengthened.

Schizophrenia has stolen my son. But I will not let him go.

My small black heart

blackheartI know the goal of meditation is to find oneself suspended–if briefly–in puffs of nothingness. No words, no skittering chains of thoughts, no human entanglements. As a newcomer to regular meditation (for me, that means actually sitting 2-3 times a week when I absolutely can’t avoid myself any longer), those moments of “being” are few.

Mostly, I am waking to myself over and over to remember the tail-end of a thought stream very much like a dream. Then I focus on my breath … one, two, three …. only to wake moments later from another tangent. Many of these waking dreams include Sean. I know this because my centering breaths occur in a chest that is tight with longing and I have the sense of him having been near.

Yesterday, my meditation yielded something quite unexpected. As I settled into the gently muscled layers of consciousness, I suddenly found myself entering a small, gray chamber. It was like a tomb, with squared, windowless walls and I had the feeling of entering into a charcoal drawing–like Mary Poppins jumping into a sidewalk painting. Only this was not a jolly holiday. This was a sad room, maybe the saddest space I had ever entered.

On the ground in the center was a blackened, encausted lump that was pulsating slowly. And at the moment I saw it I had the thought: “Oh, that is my heart!” A wave of incredible sorrow and tenderness and compassion engulfed me. I suddenly understood that I had entered the very center of my human life. The reality of now.

And I cried for myself.

Later, as I mulled over this experience and its power, I realized something. Yes, I really had transcended my daily existence. I had stopped running long enough to stand with my broken heart. But there was more to it. There was an I and a Thou. The life in ruins, and the loving observer of that life.

I am both. And somewhere, in Sean’s shattered life, his soul is standing beside him too.

On Hearing Voices

0920OPEDnegley-popupMadman or shaman? It’s a long lived debate whether those who hear voices are tuned to another realm or just plain nuts. Where my son is concerned, I have always erred on the side of shaman. It’s been more than mere error–I have long taken pride in his sensitivity and otherworldly interests.

Since he was quite young–five even–Sean has been fascinated by what is felt and conjured and intoned. I remember a little seance he once held in my bedroom, his sweet face so earnest in the candle light as he cast his spells. One of his favorite books was a picture book on shamanism; it was dog-eared by the time he was 10. And once Harry Potter hit the scene, we were utterly lost.

I saw we because I was his companion in these yearnings. When his study of  Wicca became very serious, around 11, I took him to a celebration of Imbolc at a friend’s coven–a jolly gathering of large women who embraced him warmly. He had me as his “flock” for his own ceremony in the woods near our house–I can’t remember which Wiccan celebration it was, but a little green snake hung on a bush nearby and we both thought it a good omen.

I didn’t especially truck with any of the stuff myself, but I could see it was important to him. It was his spiritual life and it was a place of much learning and empowerment to him. He really was impressive: He taught himself fluent Pictish–the written alphabet of the ancient Celts–and wrote pages and pages in a little notebook. He acquired all kinds of knowledge of herbs and plants, of history, of anthropology. As he got older, he became fascinated with psycholinguistics (whatever that is) and philosophy–and poetry.

But when–several months before he left for California to lead a life on the streets–he told me he was hearing voices, I began to feel uneasy. At first I wrote it off as his flare for the dramatic. Then I started to wonder if there might be some truth in it–that he really did have some psychic abilities that allowed him to tune into vibrations from “beyond.” It was possible. And such viewpoints are part of my DNA: I come from a New Agey kind of family where psychics are regularly consulted, energy healings can take place over the phone, and where we were encouraged to guzzle great quantities of green algae to preserve life and limb.

The fact is, I wanted to believe that Sean was psychic. It explained a lot of things in his childhood, which was unduly fraught with anxiety attacks, social otherness, and a pervading sense of being “unsafe” in the world. I envisioned him harnessing these powers to help himself and others, to heal and bring hope. His psychic powers would bring him a much-deserved sense of identity and belonging. He might even connect with other psychics, strengthen his skill through psychic mentors who would help him grow into the shining man I know he’s capable of becoming.

But that is not what happened.

Sean’s voices didn’t offer pearls of wisdom from beyond the grave. They chuckled and growled. They argued with each other. From what he told me (back in the day when he still spoke to me), it was a motley chorus of spirits that inhabited houses and rooms, department stores, and even natural places. At that point, I don’t think they were telling him to do anything, but sometimes their aggressiveness scared him. He reported several times that he was held down by spirits as he tried to sleep. They haunted many of the abandoned houses where he squatted in Maine, and later San Francisco, forcing him to flee.

A couple of times I casually asked him, “Do you think it might be a sign of schizophrenia?”

“I thought of that. But no.” He was definitive. Even when I pressed tenderly on the idea that it might be more than coincidence that the voices appeared just at the time he stopped taking his long-time antidepressants.

The voices began to be a casual part of conversation between us. I’d ask him as if mentioning an acquaintance of long past, “How are the voices doing?” “Oh, they’re still talking,” he’d say with a tinge of sarcasm. I asked if he had ways of controlling them, or turning them off, or protecting himself. He mumbled something I can’t remember.

In any case, I felt it was important to accept them even if I didn’t believe in or understand them, because, in a sense, we were both his companions: I have always been the one person Sean can talk to. I am the person he calls for the pep talks, the long-distance money wires and plane trips home, I am the person who will laugh with him about his bungling, swashbuckling attempts at independence. I believe I have been, most imperfectly, the voice in his head.

You can make the case that it was high time he cast me out to find his own voice. As we all do–or think we can when we are young (before we realize we are haunted forever by those we have loved). But by the time I found him sleeping in the gutter, I believe they had overcome him. His own voice didn’t have a chance.

I still send my voice out to him every night. I keep hoping it will drift through the tangle of chucklers and demons who have encausted his reason, perhaps reaching him as he sleeps. Like a whisp of smoke, so light it can enter undetected. It says to him: I’m with you Sean. Hear me, trust me, follow me. You are not alone.