The Dropouts

Three Women Who "Flunked" Hospice by Continuing to Live.

Drawing of Katherine, from the forthcoming “How to Say Goodbye, The Wisdom of Hospice Caregivers” by Wendy MacNaughton, available to pre-order here.

As my mom transitions to hospice care, I find myself thinking back fondly on three wonderful women I met while volunteering at the Zen Hospice Project. All three “flunked” hospice by outliving their predicted six-month “sentence” and eventually left the Guest House to continue their lives elsewhere.

Katherine

When Katherine arrived at the Guest House, on the verge of her hundredth birthday, she was frequently delirious and in a lot of pain. But after the nurses adjusted her pain meds, she quickly returned to her lucid, droll, imperious self.

She had been placed in Bed No. 6 — one of the nicest rooms, at the end of the hallway, with windows looking out onto the backyard garden. Roy Remer, my supervisor, had told me that there was something wrong with the hinge on her door and asked me to go fix it. No one in his or her right mind would ever ask me to fix anything: as my wife, Sara, has noted, my relationship to the physical world is tenuous at best. But at the hospice, I’d learned, you did whatever needed doing.¹

I grabbed a wrench and went upstairs to Katherine’s room. As I entered, she seemed to be dozing. I pulled a chair over to the door, got up on it, and tried fixing the hinge. I quickly got flustered: it seemed that the bolt (or whatever) tightened in the “wrong” direction, counterclockwise rather than clockwise — and no matter how I adjusted it, the door still wouldn’t close properly. I’m not sure how long I’d been struggling with this when I heard, for the first time, Katherine’s powerful, stern voice, with its thick Russian accent: “You have no idea what you’re doing, do you?”

I twisted around on the chair to look down at her. She was peering up from the bed, and she was smiling at me as one might smile at a well-intentioned but awkward toddler. (I’ve been smiled at like that many times in my life.) “No, I don’t,” I admitted. I climbed down, pulled the chair over to her bed, and sat on it. “But I can get you something to eat, if you’d like!”

“Perhaps a snack,” Katherine said. “I know they have some herring in the kitchen.” She leaned her head closer to me, confidingly. “Yesterday,” she said, “they brought up to me four herrings on plate. For a meal! Is herring a meal?” She glared at me, awaiting my reply.

“No,” I said, “herring is not a meal. It’s a snack.”

“Right!” she said.²

And just like that, we were best buds.

(Later, as I recall, Roy came up and fixed the door hinge. It took him about a minute.)

Katherine thrived to such an extent that, after celebrating her 100th birthday, she moved out of the hospice and into a lovely room at the San Francisco Jewish Home. When I visited her there, I’d always bring a jar of herring — as a snack, of course; never a meal.

Jeanette

Jeanette before she got sick, with two of her great loves: rescue animals and motorized vehicles.

Jeanette was another occupant of the same room that Katherine had stayed in — and wow, did she #Occupy it! One of the first things she did after arriving was to have me tape up in the window a sign she’d printed out that said “REVOLUTION NOW.” A proud alumna of Cal-Berkeley from the Free Speech days, she’d never lost her revolutionary spirit — even as she dealt with the horrifying depredations of ALS (“Lou Gehrig’s Disease”), which was rapidly eroding her ability to get around.

Jeanette was determined to keep moving as long as she could. Using her walker, she’d slowly work her way back and forth along the second-floor hallway until she became totally exhausted. She’d brought her desktop computer to the hospice, and keenly followed websites that reported on political developments around the world. Formerly a travel agent, she had been seemingly everywhere, and told me juicy tales of her love affairs and radical doings in Morocco, in the tumult of Paris in 1968, and during her undergrad days in Berkeley. Wow, she was a dynamo!

But ALS is unbelievably cruel: it keeps shutting a person down, relentlessly. One day Jeanette, distraught, told me she didn’t know if she wanted to go on living. She was terrified of dying by suffocating on her food — it was increasingly hard for her to swallow — and was contemplating ways to end her life before that could happen. We were in the Great Room, downstairs. (Thank Buddha for our crotchety little elevator!) It was a beautiful room, with paintings, vases of flowers from the backyard garden, cushions for meditating piled up near the fireplace, incense holders, and bookcase shelves packed with board games and coloring books for visiting children (and grownups). Jeanette asked me what I thought she should do. I told her that I wanted her to live, because I loved her and wanted to keep knowing her. Later, back up in her room, she asked Roy, the volunteers’ supervisor and a longtime volunteer himself, the same question. I stood outside her doorway, listening in. Roy, tell her she should keep living!, I pleaded with him in my mind. Instead, he told her that making this choice was not up to him. I don’t remember his exact words, but I felt their wisdom: he was respecting one of the few things she still had control over — the power to make her own decisions.

When I came in for my shift the following Friday, Jeanette, leaning into her walker, was waiting for me at the top of the stairs. She was beaming. “Josh,” she said, “I’ve decided to live!”

One of the things that Jeanette said she missed the most was driving. A great blow in the progression of her disease was when, just after she’d bought a Toyota Prius, her doctor had insisted that her driver’s license be taken away. (She’d held on to the car anyway.) During one of our conversations, I told her that, like many other New Yorkers, I’d never learned to drive — but that her descriptions of the glories of driving had now inspired me. I asked her if she’d help me prepare for my learner’s permit exam. She loved this idea, and threw herself into tutoring me — even finding sample tests for me to take online. Later I asked her if, once I got my driver’s license, she’d let me drive her Prius. She gave me a hard, appraising stare. “Josh,” she said, “I know you well enough to realize that you’d smash up my car in minutes! You’re too damned distractible!” So she came up with an alternative plan: After I got my license, we’d get a car from a place that rented out vehicles that were already banged up; then she’d sit in the passenger’s seat as I did my first driving in some rural area where, she said, the worst thing that could happen was that I’d hit a cow and have to pay a $500 fine.

Ultimately, she decided to move back to her home in Point Reyes and pay visiting caregivers with the money that remained from selling her travel agency.

A couple of months later, Sara and I went to see her (Sara drove!). Jeanette was confined to a wheelchair by now. She took us out to her garden, where she showed us a little forest made up of trees she’d planted when she first bought the land years earlier. “I love those trees!” she said. “I consider them my children.”

After that visit, I continued to correspond with her via email. At one point I wrote to her:

Dear Jeanette,

It was so wonderful to see you -- and to explore your astonishingly beautiful home and grounds (wow!!).

Just checking in to see how you're doing. ... Have you ordered the new motorized wheelchair? How are you feeling? Etc.?

I had my second behind-the-wheel driving lesson yesterday -- and again, amazingly, no one died! So we're still on track to try to avoid cows and elks in the not-too-distant future!

Warmly,
Josh

She wrote back:

Yo Josh ......

Got your message. Can you drive?????? :)))))) Do you feel comfortable behind the wheel???

I have moved from having only morning caregivers to a 24/7 situation with a very strong Fijian. I have not really driven my own car since I got home from Zen. My family insisted because I was weak from no real exercise. I am exercising now.

Besides the ALS … I am drowning in mucus from pollen. I am taking Sudafed, but it doesn’t always work well. 

Bottom line ...... let me know how you feel in the car and we can make a date.

Your pal, Jeanette

I was still harboring hopes that I could go driving with Jeanette in the environs around Point Reyes, maybe even with her taking the wheel for a bit, when I got this email from her:

Yo, Josh

i have grown so weak that I can no longer drive. Which puts the kibosh on taking you out in the Park. I apologize but I am coming to the end of my road.

In view of that, it was really nice having you as a friend ... for a short time. You are great!!!!!!

Jeanette

Many months after Jeanette died, I was on a bike ride in Point Reyes with my teammates from the Leukemia & Lymphoma Society’s Team In Training. Before each training session, a member of the team usually dedicated the ride to a loved one who had died from blood cancer — but on this occasion, our coach let me dedicate the ride to my friend Jeanette, who’d died from ALS. When we went past her old house, I pointed it out to my fellow riders. We paused and gazed, with appreciation, at the sturdy trees she had planted.

Jenny

A drawing of Jenny by Claudia Biçen, from her project “Thoughts in Passing: What the Dying Can Teach Us.”

Jenny was a tough one! When she came to the Guest House, she’d already gotten herself kicked out of another hospice for repeated violations of protocol. She could be brutal in conversation. She snapped at nurses and volunteers. She was demanding. She was petulant. She had little regard for the no-smoking rule.

We all loved her madly.

And not just because she could charm your socks off, when she was in the right mood. She had a luminous intelligence and a rollicking sense of humor. And she was a shrewd observer of others, a skill honed over decades of being institutionalized and then living on the streets and in SRO hotels. Once I was with her in the hospice’s backyard garden, where she would grudgingly allow herself to be taken to smoke. I was fumbling with a book of matches as she waited for me to light her latest cigarette. I gave her an apologetic smile as I continued to fumble. Squinting up at me from her wheelchair, she suddenly had an insight: “You’re a boy!” she declared, gleefully. Yep, she got me — my whole man-child persona.

The fundamental thing about Jenny — what grounded her, what saved her — was that she was an artist. She did most of her work with tiny beads, which was particularly challenging given her deteriorating eyesight. We’d set her up at the dining-room table, and she’d peer through a magnifying glass while ever-so-slowly building her next piece. For someone who could exhibit such a short temper, it was incredible how she could stay so focused on her art-making for so many hours!

One of Jenny’s artworks. As Elizabeth Greene, another former Zen Hospice Project volunteer with whom I enjoyed sharing many shift-change meetings, notes, this piece was “created entirely of seed beads, meticulously placed with the patience and concentration of a surgeon, in the Huichol style.”

In an interview with the artist Claudia Biçen, for her project “Thoughts in Passing: What the Dying Can Teach Us” (see Biçen’s portrait of Jenny, above, which toured with the Smithsonian National Portrait Gallery), Jenny reflected on her life:

Sometimes I wonder what I have to look forward to. And the more I think on that, the more it draws me to what it was. As a child I had nothing. And I had to make my life work, ’cause I was kept in the attic. And not having anything, I would purloin things from the school. And in time I had paintbrushes, scraps of paper. Art would take me to another world.

Oh, I tried to tell people that things weren’t right at my place, but nobody listened. By the fourth foster home they didn't have a clue what to do with me. They started to give me medication and they had me on 28 pills a day and I was introduced to shock treatment. Nothing terrified me more than that. And I would hang in the back and the paint on the walls would seem to bubble up and there would be insects and snakes crawling underneath the paint. And I think where my head is now; I have come so far.

When Jenny arrived at our hospice, she was suffering from an array of deadly cancers. Like our other residents, she was thought to be very close to the end. But then she kept on going — for months and months, and more months — until the donated funds that were paying for her stay finally ran out. Fortunately, she was able to get placed in a pretty nice subsidized apartment in a senior-living facility. I eventually lost track of her, but the last I heard she’d gone on a cruise to Mexico! For most of her life, authority figures had tried to negate her humanity. They failed. Sometimes I need people like Jenny to remind me that being human can be a superpower.

1. Most powerfully, this sometimes applied to administering the beautiful ceremonies we did when one of the residents died. It was a revelation to learn that I, a volunteer with no Buddhist practice (though I came to love the 10-minute meditations we did every shift change), was “qualified” to lead these rituals when no one more experienced was available. (I’ll write more about the extraordinary bathing ritual and flower ceremony in a future post.)

2. Katherine, like all the other residents, received endless amounts of scrumptious food from the hospice’s world-class kitchen staff. This little conversation was her way of screening me, to make sure I understood the finer distinctions in life and would thus be worthy of her continued attention.