December 2016

Outside the Bardos of Death

Barbara Churchill

The last thing I did for Joan before she died was buy her a bed.  She tried to get me to go to Sears and call her to talk about every bed on the sales floor, but I refused.  By then, I was refusing many of her crazy demands.  I shopped on-line, using my credit card because she wouldn’t give me hers; she knew someone would hack it.  The bed had to be delivered the next day; she didn’t have much time left, though she never put it that way.  I knew.  I forgot, though, that she’d never figured out how to use the flash button on her phone, so when the delivery men came, and beeped to be let in, if she was on the phone, she ignored them.  Over and over.  After we finally figured out what was happening—I kept calling Sears asking where the bed was and they kept saying they’d tried to deliver it–we had to station someone outside her apartment to flag down the drivers and let them in.  She only had two nights in the bed.  This was Joan as she always had been: asking too much, insisting friends go along with her phobias, her craziness, and then, when we gave in, went along, adding another phobia until we were as helpless as she.

She lived off of us, weaving a web around those she knew most likely to give in to her whims and obsessions.  For years, even before the cancer, we gave in to her neediness, her helplessness.   I once heard her ask our department chair to come to her house to change a light bulb.  And he did.  She lived life letting others do for her.  At her dying, one of us stayed until the end.  Most of us did not.  By the time of the bed escapade, Joan had sucked me dry.  I forced her to hire help, a caretaker and a driver, help she could well afford, and dropped out.  I, we, watched and waited for her to die.  I am ashamed of myself, but I could do nothing else.

At her best, Joan is eccentric, delightfully crazy and this binds some of us to her. Somewhere in her hard scrabble past, she realized she had a brain that absorbed everything.  She escaped a lower class Polish/Italian neighborhood in New Haven, an alcoholic mother and a detached father, got a Ph.D. in Comparative Literature from Berkeley, lived a wild life teaching in Puerto Rican universities and traveling the Caribbean, settling down finally with a soul mate who, after ten years together, simply disappeared.  That wild, adventurous woman grew more and more uncertain, adrift.  She found a teaching job that called on half her skills and gradually grew scared of everything: elevators, her washing machine, computers, changing light bulbs, driving, travel.

Every so often in the years since I quit teaching, we met for coffee.  We shared an interest in books and I’d catch up on department intrigue.  I didn’t confide in Joan; she wouldn’t have listened and I had no desire; she was a world-class gossip.   I heard all about her life, though, her relatives, her classes, her TV shows, looking interested and nodding at moments during the monologue. I know she cannot form friendships, so I didn’t consider myself her friend.   Even those people she proclaims friends she betrays with gossip, no-shows to their invitations, palpable disinterest.  She never feels any obligation to attend ceremonies, or accept holiday invitations; she missed a good friend’s wedding, forgetting to tell her she wasn’t coming.  Still, plenty of people enjoy her company because her non-stop, stream of consciousness monologues are always funny, with an occasional nugget of brilliance from a brilliant mess of a mind. She reads everything and knows all the latest fiction, the latest criticism, films, Hollywood gossip, who won American Idol.  When I get together with her we exchange books. She says she wants my opinion on what we read, though she never listens.  I can tell; she watches my lips to see when they stop moving, then she starts talking again.  When I first started teaching at the French School Joan was to be my mentor for the upper-level classes.  The department chair told me to call her because in the twenty years she’d been there, “she’d taught them all.”  I do call but before I can explain fully who I am and what I need, Joan cuts me off and starts in, spinning off bits of the courses as things occur to her.  I hang up and sit on the floor and cry. I have no idea where one course stops and the other begins.  Joan is my sole resource and I feel as if I am depending on Lucky in Godot.  She is not a linear thinker and can’t be held to a single topic for more than a moment; then she’s off in another direction. She gave no thought to what a new teacher might need, and never gave me room to ask.  I went to check with her after my first class, feeling as if I’d figured out one day at least. She said, “Yeah, all your students came to me afterward and begged me to let them into my class, but I told them just give you time.”  So, no, Joan is an entertaining presence, but not a friend.

Psychologically, I can make some sense of her: she had no attention from her parents.  She never married; never wanted children (they make her nervous).  She focused her life on her mind, and eventually on Raymond.  After he left–simply gone one day when she got home from school, taking all his things and leaving no note–she had no one and grew more and more paranoid.  As time went on, that sharp mind became a mind so fraught with phobias and fears and obsessive quirks, she was nearly paralyzed.   Joan is alone.  She has a brother, nice guy, not too bright, she says.  Joan is the brains in the family, she tells me often.  She has a sister who doesn’t speak to the brother, is older and battling cervical cancer.  Joan didn’t go to her father’s funeral–fear of travel combined with a complete lack of emotion at his death—she saw no reason to go; he was dead, after all, and she didn’t like him much anyway.  Once or twice since I’ve known her she’s gone to Connecticut to visit the dying sister, but hates going–too much family.  She doesn’t have a family and doesn’t really care.  She uses us as her ‘family,’ a family that is expected to give and give and get nothing in return, like an infant and its mother.

We always meet in the only coffee shop she can enter, Aroma Café in a local mall; she can only go places she’s been before and decides are safe—this was one of them.  It is an inconvenient meeting place for me, but Joan can’t meet me half way.  She can’t follow driving directions and can only park in a huge lot, as far away from any other car as possible.   Anyway, this time, as we drink our coffee and she offers to buy me a croissant, forgetting that I don’t eat gluten, something I’ve told her every time we have coffee, she asks me again if I will be her Healthcare Power of Attorney.  The first time she asked, a year ago, I put her off, saying ‘let me think about it,’ hoping she wouldn’t ask again. It seemed odd, inappropriate; we hardly knew each other after ten years. Now she asks again, though why I’m not sure.  Nor am I sure why I said yes, except I knew she had no one else.  Joan knew I’d do all I could to help because that’s what I do.  Neither of us knew she was dying.

Over Mother’s Day, while I’m out of town, she’s hospitalized and given emergency transfusions.  When I get back, I have a message from her saying she’d been sick, “actually, pretty sick.”  When I call she tells me the diagnosis, a rare bone marrow disorder in which her marrow stops making red blood cells.  If she knows what it means, she doesn’t say so; she seems to regard the whole thing as rather curious.  I go into overdrive. Now my commitment has legs and I take finding out about the disease as my mission.  I become the best informed Healthcare POA ever, assuming Joan will want to know what I learn.  She clearly doesn’t, I find out, when soon after the phone call, I drive her to the doctor, the first of hundreds of drives over the next few months.  She distracts me with chatter, asks if I’ve read the latest James Lee Burke which she’s bought in hardback as a “treat” for herself, talks on and on until I understand she’s trying to keep me quiet.  I also understand what another friend says: he can’t drive her anywhere because the non-stop chatter is so distracting.  That, of course, rules him out as a possible second driver.

Thus begins driving and driving and more driving, to doctors, to hospitals for transfusions, to grocery stores, to the hairdresser.  She is already too weak to drive herself.

I must get her to fill out the POA forms so I can do what she asked.  I suggest a living will.  By now, Joan is in extreme denial.  It’s nearly impossible to get her to focus on the forms.  She puts me off and puts me off.  Finally, one day, after I bring her home from transfusion, I insist.  I know she’s tired from the day, but I have to get her to do this. I draw her back from her meandering chatter over and over again, the chatter which allows her not to hear me. She was the one who asked me, I tell myself.  I have to get her to do this because she wanted it; wants it, needs it, though maybe now we’re both wondering why she asked.  She asks me to fill out the forms for her, the living will too.  I tell her I can’t.  Finally, as I drag her back to the questions over and over and explain the terms to her again and again (her Berkeley trained brain can’t make sense of terms like ‘extreme measures’), she makes a few pencil notes and says she’ll finish later.  I know she just wants to get rid of me.  Now that she’s face to face with death, she doesn’t want to think of what’s to come, including needing a Healthcare POA.

Eventually, I take the penciled forms to Kinko’s since, after months, that was all she had. The Kinko copy doesn’t come through—the copies are as blank as if she’d never touched them.  She did have her signature witnessed, after I nagged and nagged, but when I get to Kinko’s, I see she herself didn’t sign it; she had a blank signature line witnessed by two people.  We’ll have to start all over again.  She is a child, has always been, I think, and is getting more dependent every day.  I realize she wants, in dying, what she’s always wanted—people to take care of her, to think for her, to entertain her obsessions.  I believe she thinks life will go on normally as long as she doesn’t think, doesn’t let reality in, just like she believes the drugs will cure her, despite the undeniable decline week to week and the literature—which she never reads.

Often when I pick her up, she answers the door ghostly pale, leaning on the door jamb for support.  I tell her it would be so much simpler if she’d give me a key and a “fob” so I could get in the outside security (especially because she often forgets how to buzz me in), but she will not, telling me she doesn’t have extra keys.  I offer to have some made while she’s at transfusion, but she says she doesn’t like to have her keys out of her hands.  She has to stop two or three times on the way to the car to sit and breathe.  But, she won’t take the elevator; elevators scare her.   I cook for her, but often she tells me she doesn’t like what I bring, couldn’t eat it.  So I change it.  I create a list of people who will cook or drive; quite a few people volunteer.  Most of them bring her food once or twice, but after she tells them unceremoniously that she couldn’t really eat it; she had to throw it out, they stop.  I keep driving and cooking and running errands and she keeps asking for more and more.

She wants me to figure out what questions to ask the doctor and go with her.   Once there, she doesn’t want to hear the doctor’s answers; so, when I manage to get a question asked, she begins a diversion.  When the doctor realizes what’s happening, he doesn’t answer; he collaborates in her denial.  He realizes, long before I do, that she wants to know nothing. And he probably thinks, ‘what difference does it make?  The outcome is the same whether she sees it coming or not.’  I bite my tongue and drive her and drive her and drive her, every time she calls. She never thanks me except one time, after she had a CAT scan to look at the mass growing on her liver.  When I brought her home, she was so sick from the dye, she vomited for hours.  I lay on her living room floor waiting.  I persuade her to call the doctor; go pick up prescriptions.  That time she thanked me.

She won’t ask any of the other volunteers for help; she doesn’t like most of them, and some she doesn’t want to impose on (!) and gradually, they stop calling. I’m too easy, stuck like a fly in her web of neediness, helplessness. I’m hyperconscious of her every symptom, but only vaguely aware of how trapped I am.  I watch and suffer as she is able to do less and less.

She goes through treatments, takes one pill for a while, then another, with nasty side effects.  She has transfusions every two weeks, sometimes more.  I drive her to transfusions; help her walk down the hall, settle her in the chair.  She’s gregarious, funny and kind to the nurses, chatting as long as they’ll listen.  She’s noticed several people who look worse than she does, she announces.  She’s worn all her usual jewelry: five or six bracelets, mismatched feather earrings, an ankle bracelet, tank top with three or four scarves.  Her new dye job, her trademark Marilyn Monroe blond, worn in a flip. When the nurse brings the blood, Joan exclaims: “There’s my blood!”  She sends me to the fancy deli, Balducci’s, to get her juice and a sandwich so she won’t have to eat hospital fare.  She’s supposed to be resting but she digs through her bag of newspapers, magazines, cookies, a change of clothes, books, emerging with Vanity Fair and Caitlyn Jenner.   She knows I don’t care anything about it, but she tells me all the details of his/her transformation.  We talk about new literature, the new Anne Enright which we both love; the new translation of The Stranger.  She speaks with the nurses in Spanish, asking them if they’d seen the last “Real Housewives.”

She circles and circles death, pulling me and one or two others with her.  Nothing has a pattern, nothing makes sense in dying.  I find myself doing the same errand twice because she got it wrong the first time; asking the same questions of the doctors; trying to sort out when she’ll need transfusions, and when to pick her up and drop her off.  She promises to call me, as the transfusions don’t always end on time.  But, her cell phone makes her nervous, and she forgets it or forgets to turn it on.  I have to call the nurses in the transfusion center.  She has a book where she usually writes appointments, but it doesn’t help as each week brings a new chaos, another emergency, another call to me because I’m the one she always calls.  I try to get her to hire someone; she will be getting a lot of retirement money soon. She refuses; she doesn’t want a stranger driving her.  I tell her Carmen isn’t a stranger; she helped me after a surgery.  Carmen won’t know where to go.  She can’t afford Carmen. She doesn’t believe the retirement money is really there even though we show her the print-out.  I tell her I can’t do all the driving; I have other things I have to do.  I tell her Carmen could do her laundry; but she’s scared of her washing machine, even if Carmen did the laundry and cleaning while Joan was at transfusion.  No, she already has Carol from upstairs doing her laundry in Carol’s machine.  No, she doesn’t want anyone in the apartment when she’s not there.  I know the disease is affecting her thinking, but I also know she’s always thought like this.

Somehow, the few of us who are left want her to acknowledge where she stands.  We need her to know what we know, that she’s dying, probably within weeks.  But she won’t and her denial sucks us in too.  Just as she relies on us for help, she now relies on us not to talk about how serious the disease is-and we join the conspiracy.  She says she hasn’t read a thing about it, and I believe her: she doesn’t know how to look through the on-line information even if she turned on her computer, and the oncologist only tells her as much as he thinks she can take.  We see her desperate optimism, or her denial, or her ignorance and say nothing.   None of us knows what she’s really thinking, because for all her chatter, she reveals little, except in rare moments.

Yesterday when I called to check she said she hadn’t slept well; the storm knocked out her power so she was awake worrying about the ice cream in her freezer.  And she’d been reading The Bardos of Death.  Tibetan Buddhists believe after the physical body dies one drifts, awaiting rebirth.  Throughout the meditative life, a Buddhist prepares for this intermediate state.  Towards the end of life, a teacher guides one through the last days or weeks in meditation as preparation. The intermediate state often brings visions, demons.  Jealousy, envy or greed in this life manifest as monsters.  Only the most contemplative, well-trained, who have practiced a deeply spiritual life can face these demons with the equanimity necessary to peacefully move to the next stage.  All this Joan tells me, because she’s been reading and we’re both Buddhists and I should know this.  And because she’s dying.  I take this small moment as truth from her, yet I know she dips in and out of Buddhism to suit her purposes.  A few weeks later, when a friend, Nancy, sends her The Bardos, Joan is shocked, seems to have forgotten she was reading them herself the night the ice cream melted. She won’t touch the book, wants me to take it to the post-office to send back to Nancy.

She fills her days, other than with doctor and hospital visits, with trips to Whole Foods, Balduccis, the hair dresser’s.  She pays attention to her diet for the first time in her life. She buys and takes all the enormously expensive vitamins suggested by the cancer nutritionist who assures Joan these will make a difference, could eventually cure her if she’ll only eat and cook according to the cookbook the nutritionist wrote.   She’s scared of her stove and oven, so she can’t cook, but she isn’t bringing home seven Lean Cuisines and ice cream to last her the week either, instead, going to the hot deli at Balducci’s.  I insist she hire Carmen and begin to tell her when she calls that I cannot drive that day.  She calls Carmen, but doesn’t trust her with a key, won’t let her in to clean the apartment while she’s at transfusion; she’s reluctant to write the checks to Carmen so I have to prod and prod.  She complains Carmen can’t ask the doctor questions like I can, but of course she never listens to his answers anyway.  Carmen doesn’t know what she likes at Balducci’s. Often I give in and drive.

Finally, her bone marrow shuts down entirely; the only red blood cells she gets are from transfusions, the disease has morphed into leukemia.  I know from my reading this is the last stage; I don’t know what Joan knows.  When I call the doctor, he tells me (her Healthcare POA) to call hospice.  I do.  I set it up; all they need is an order from him.  I go to the next doctor visit because I know he’ll talk to her about her options.  But he changes his mind when he sees Joan’s reaction to the word hospice. He’ll give her chemo instead, he says, and transfusions.  It could help, he tells her, and she is eager to believe the chemo will cure her.  By this time, the constant lack of oxygen has affected her mind; she searches for words, repeats herself, forgets what she just said.  So, maybe she really believes this.  She’s read so little she doesn’t know for sure anyway.  She lasts four days on chemo before an infection sets in and she is hospitalized on massive antibiotics.  I spend hours at the hospital, trying to figure out her care, trying to figure out if she’ll get more chemo in spite of the infection, trimming her nails, bringing her food, massaging her frozen hand, getting her pajamas so she doesn’t have to wear a gown.  For this, I have to call Carol, the laundry lady, have her let me into the building and, miracle, Joan’s loaned me a key so I can get into her apartment.  Now, I have to select from the twenty or so pairs of leopard print silk PJ’s she has, bought probably from Nieman Marcus, to find the exact ones she’s requested and take them back to the hospital.  Along with the key.

I can’t detach; and, while Carmen is driving more, I’m still emotionally all in.  Joan asks more and more, calls with lists of things I’m to bring to the hospital.  I spend an entire day on the phone trying to get her discharged—something the hospital has screwed up.  At ten o’clock that night, after the last phone call with the home health agency I’ve found, I count the calls on my phone for that day: sixty-five.  I sit on my patio in the dark and admit, filled with shame and guilt as I am, I can’t see her through this. I don’t know how or when it happened but I’m living her dying with her.  I suffer for her.  I can’t sleep, worrying.  I go over and over the side effects, her blood counts, trying to see trends.  I don’t have the ability to separate myself from her suffering, though she is able to separate herself from herself. The three of us she calls on over and over, four, counting Carol from upstairs, do what she asks, however strange or useless.  We listen to the torrent of words, which never stops even as she grows weaker. We think of what she needs before she does.   The idea never crosses her mind that we are bleeding dry.

Finally, a few weeks before she dies, I tell Joan I can’t do it anymore; I’m drained.  I have to give the healthcare POA to her niece, Aimee, who already has the financial POA because Joan can’t handle her money any more.  Poor niece; Joan doesn’t even like her and the niece knows it, and suddenly she’s intimately involved Joan’s life.  But, she is family, and as one friend pointed out, it’s time they stepped up.

When I admit my own helplessness, my loss of self, I am so relieved.  I continue to do a few things as Aimee transitions in, but mostly I grab my life back again.  I insist Joan hire round the clock care; the alternative is a skilled nursing facility.  I insist she let Carmen drive her, and that she pay Carmen.  All the Medicare and retirement work was done for her before Aimee took over.  Without us, Joan would have no insurance, no retirement income, no help.  We took over Joan’s life, as she was only too happy to let us do; I started to take over her death.  Now, I am shocked at myself, but I face the truth: I am waiting for Joan to die.  This is a grim, ugly way to think and yet…. There’s no other path and one travels it alone.

She died with no instructions for what to do with her hundreds of books, her many possessions, her body. No instructions for a memorial.  Or no memorial.  She assumes, even in death, we will take care of things.  And we do.