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.

Cats and Rats and Mother’s Day Wishes

Quote

It happens every few years that my son’s birthday and Mother’s Day coincide. That overlap is recorded in his baby’s book on the day he was born, along with some pressed lilacs a neighbor brought me from her garden.

Today, I find myself taking my emotional temperature all morning as friends and family send Mother’s Day greetings tinged with their pity and love. At the psych hospital that has been Sean’s home for the past year, birthdays are celebrated en masse once a month. So I have no idea when his public acknowledgement will come around or if it even matters to him (I doubt it; he was never big on birthdays). But I’m wondering if he is tending his birthday carefully, privately, as I am my motherhood. And if we share a secret that way, just for today.

Here’s what I’m noticing: I woke to an open bedroom window with a lovely light spring rain outside and new leaves soughing on a distant tree. The smell of bacon actually wafted up from somewhere–a beautiful, smoky cloud. My cat son, Ruben, is curled on the bed beside me where he’s been since last night when I traumatized him with what was supposed to be a cute remote-controlled mouse, but which turned out to be a huge, black terrifying rat from China that bowled him over in the hallway.

Later today I will call the nurse’s station and ask someone to wish Sean a happy birthday from me–since he won’t take my calls. Okay. No longer a gutting. I will hope he at least took the money from the card I sent before tossing it, unread. Practicality. I will envision his delight when he gets the book he requested–Oliver Twist–which is on its way, an incredible little edition with gilded page edges and original engravings that fits perfectly in your hands. Call this hope.

I used to despise it when people who had been on this path longer than I told me it would get easier, even if the situation didn’t improve. But even I have to concede my Mother’s Day thermometer does read something less than a fever. Sean is safe for now so I can afford to wake up a little to my own life, even if I’m not crazy about living it this way. He will always be my mercury, but I am finding ways to cool myself down.

 

Save

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.

 

Save

Save

A Mother in Sheep’s Clothing

Old woman with sheep

“Mom, I need you to do something for me.”

I haven’t spoken with my son in almost two years. Since he abruptly cut off communication, prompting the Berkeley street search that begat this blog.

Actually that’s not entirely true. I have managed to slip in a couple of unwelcome phone calls when he was hospitalized after being hit by a car. Unsuspecting weekend-shift nurses who didn’t know better than to transfer the call through to his room where he was presumably pinioned and tractioned. A sitting duck.

Those calls all began with a long pause. Sean, I’m imagining, getting his mind around the person at the other end of the line. Then his strange, new schizophrenic voice. Robotic: “I’ve asked you not to call,” or “I don’t know who you are and I want you to stop harassing me.” Click.

Each time, I’ve whispered my desperate message quickly before he hangs up: “Honeyiloveyousomuch.”

These calls are for me, let’s face it. I am told he hates me, that he delusionally believes I am a child abuser and that he holds me responsible for all the negativity that has occurred in his life since he hit the streets and before. He refers to me by my first name only. My declaration of love isn’t exactly a balm for schizophrenia.

But I can’t help wanting to get the message through. I have to believe that a core of him still needs my love. Like all mothers, my tragic flaw is believing that my love can protect and bring comfort to my child. Against all odds.  When it’s probably me who needs his love.

Once I got a nurse to deliver a message to him that only he and I would understand, hoping against reason–or is that unreason?–that it would prove to him who I am. The message was part of a comical dialectic we used to have when I would sometime guess his thoughts, anticipate an action, or know just the right meal to make.

He would say, “How did you know that?” And I would ruffle his hair (before he got too bristly to touch) and counter: “Have I not been your mother for a thousand years?!” We chuckled over the idea of us tumbling through time together mothersonmotherson. Many incarnations, if you believe in such things.

But Sean’s familial enmity has been resolute since he cracked. And it’s not only reserved for me: Once, when his father called the hospital, he became so agitated they had to sedate him. He would instantly throw away any food or clothing his family sent to the shelter where he lived for several months.

It seemed hopeless, but then I had this brilliant idea. Grandma. They have always had a rapport, my mother and Sean. Not built on much of a personal relationship–my mother is much too awkward around children, especially boys–but they share a deep, common interest in metaphysical matters, Native American spirituality, art, mysticism.

My mother is an art therapist and over the years she has worked with Sean on drawings, writing poetry, working with symbol figures in sand tray therapy, and painting mandalas: “the great round,” as she would say.

So I found myself seated at her breakfast table a couple of weekends ago, just after Sean was conserved. My heart ached. The birds were beautifully, feverishly stabbing at the bird feeder. She crunched her gluten-free bagel. And I suddenly blurted out,”I need your help Mom, I need you to do something for me.” It took her almost a minute to figure out that I wasn’t reading the newspaper or having a random conversation, but was sitting there crying hard.

I asked her to send in her handwriting a short note from me to Sean in the psychiatric hospital. She would write what I dictated and sign it, Grandma. Hidden in her shaky hand, I prayed my message of love would have a chance of getting through. I feverishly stood over her supervising every word she wrote. I don’t know how she endured me except that her own mother’s heart hurts so hard for me she was probably glad to have something to do.

Here’s what (I)she wrote — and I even had her misspell his name, as she does:

Don’t give up hope, dear Shawn. Things will get better. You will find your own path again. There are many angels–in heaven and on earth–who are watching over you. I am in awe of your strength and courage. Love and hug, Grandma

The hug part was hers.

Whether Sean read it and was comforted, or read it at all, is just one more drop in the sea of not-knowing where my motherhood now floats. But it floats. And maybe my hidden message to him is really my mother’s message to me.

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?

waiting-500x500

“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

dscn6140

“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.