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Giving in to death

By LINDA HUMPHERS
Published March 25, 2005

[Handout photos]

“Mom at Maximo: Speaks for itself, 1955,” Humphers noted. Toward the end, Louise’s long, graceful legs would become mottled from chemotherapy.

	Linda Humphers and her mother in 1997 at Linda’s house in Clearwater. Three years later, Louise Guggino — a private, stubborn, independent, woman — would die.
	Louise Marks Guggino in a blue sweater at 20. She had lived in St. Petersburg since 3 and would die there.

She got tired of jumping over fences, as Virginia Woolf said. After a passionate life, a free spirit slips away, her devoted daughter by her side.

When I think about the last days of my mother's life, the image that comes to mind most often is her sitting up in her rumpled little bed in her dark little room, her hair, now 4 inches of white tipped with 2 inches of pale rust, standing straight up in a halo around her chalk face. Her eyes, which had been green almonds, have become muddy pools. She's wearing a long-sleeved yellow T-shirt over her pink silk nightgown. An ugly black scab - a remnant from a fall a few weeks earlier, clings to the back of her right hand. She says it doesn't hurt.

She says nothing hurts, really, just that she feels cramped from lying in the same position all the time - on her left side, knees slightly drawn up, left hand tucked under her cheek. Although it has been damp and chilly in the house, she kicks off the sheets. Her long, graceful legs and feet, which have been numb since her first round of chemotherapy four years earlier, are mottled from lack of circulation, and are the purplish color of an eggplant. Wrapped around her bony shoulders is an Irish wedding-ring shawl given to her by her sister, dead for 10 years now. A small, round Laura Ashley pillow that I gave her cushions her hip.

For her, thirst is the worst and most overwhelming aspect of these final days. She wants to sit up to drink, but she's so weak that I have to wrap my arms around her and pull her up so that her skinny legs dangle over the side of the bed. She wobbles a little but won't let me steady her. Within a minute she'll feel light-headed, the black dots dancing before her will thicken and blend, and she'll have to lie down again.

But before that happens, she'll take two or three noisy gulps of water, interspersed with looks of sheer ecstasy and gratitude, and she'll murmur how delicious it tastes.

Suddenly she says, "tired, tired," and falls back to her pillow, waving me away. She can't stand my hovering. "Go, now, you have to get to work," she says.

But I wait for what I know will come. Her mouth will twist, her eyes will protrude and she'll grope for her vomit basin. I pull her up again, and the black liquid gushes out, filling one, two, sometimes three trays. She loses much more fluid, it seems to me, than she takes in.

I know, but she doesn't, that the black liquid is backed-up fecal matter mixed with gastric acid, all caused by the intestinal blockages that are part and parcel of ovarian cancer. The cancer tumors - insistent, persistent, unrelenting grains of rice that fill the abdomen - send the terrified digestive system into hiding. Digestion stops, but the gastric juices don't.

"Oh, so bitter," she says when the vomiting stops; she closes her eyes, exhausted. I bring her a thermal glass filled with ice chips - another obsession as the cracked ice must be precisely executed or she'll pronounce it "no good" when it melts. I slip a piece into her mouth, and eyes closed, she says, "Delicious. You go now."

She has always had obsessions, fixations, passions, so her preoccupation with the taste of water and the quality of ice chips never strikes me as particularly odd. True, most of her previous obsessions had been literary, artistic or intellectual - Nijinsky, Debussy, Lautrec, Renoir, Ellington, Fellini, and then the whole Bloomsbury troupe, led by Virginia Woolf, her magnificent obsession.

Private by nature, she became reclusive when her health deteriorated and allowed only me and Rose, who cleaned for her, in the house. Despite the seclusion, little changed about the way Mama and I related to each other. We spent those last days reading to each other, listening to music, watching old movies and talking. I could always talk to Mama about anything and know that she was in my corner.

By the time she has only three months to live, my mother has virtually stopped answering the phone. She allows a hospice nurse in for a few minutes a week and tries to cut off those visits, too, insisting on her very own "patient's bill of rights."

If she has to have hospice, she says, she intends to have everything else her way. She furiously refuses to let me stay with her, so my habit is to go over every morning before work and every night after work. Sometimes in the middle of the day, if I can't stop worrying about her thirst, if the pain in my heart, my head, my jaw, my shoulders, my back blinds me to everything on my desk, I drive the 45 minutes to her house, just to see her, just to touch her.

She finally agrees to let someone from hospice stop by in the middle of the day. She has fought this for months, pointing out that she had taken care of her mother, why can't I take care of my mother?

"I'm not trying to give you less care," I plead for the millionth time. "I want you to have more care."

So she relents.

It's evening now, and I'm sitting on Mama's bed, the one in which she will die, the one I'd slept in as a child. Mama has been telling me about the hospice aide's first visit. "She was so nice," Mama says. "A high-quality person, very sweet. We talked about you and about her daughter." I brighten.

"There really wasn't much for her to do," Mama says, "so I told her not to come back." I sag.

"It has to be my decision," she says quietly.

And I say, "I know."

This was in December 2000. The previous June she had been rushed into intestinal bypass surgery, a nasty, life-saving operation that she never felt she'd consented to. "I don't feel like anyone's giving me a choice," she said while she was getting dressed to go to the hospital. She was deliberately moving very slowly, her anger draining her. She threw down her hairbrush and turned from the mirror in disgust.

"The choice is always yours," I said. "You just don't have any good choices left." She was too angry, and too contained now, to answer. I was too filled with grief to say more.

Weeks after the surgery, when her doctor had wanted her to resume chemotherapy and she had told him "no more," he said to her gently, and sadly, "You'll die of starvation."

"I know," she said to him, sitting on the edge of the examining table, watching her own feet dangle. "That's how my mother died. I went through the whole thing with her."

"Okay," he said softly. He stood and took her hand, but she didn't look at him. He said a few more things about medicines she should take to ease her nausea and vomiting, but she, still not looking at him, only said, "Hmmm, hmmm."

Starvation isn't supposed to be the worst death, or so you hear. Having watched the process firsthand, twice now, I have a different perspective.

My view is this: Unless a person drops dead playing golf, there is no easy death.

On Dec. 9, Mama ate her last bit of food. It was a half-piece of a See's chocolate, sent to her from California by my sister-in-law Anna. I can't remember what kind it was, except that it was cream-filled. You have never seen anyone so thrilled by a box of candy.

"Ooooh, goodie goodie," she said, flinging herself upright with joy. Funnily enough, she kept that half-piece of chocolate down, long enough anyway.

One day she abruptly said to me, "I wish I could be more nonchalant about this, but I guess I've always been a nervous person."

"My God, Mama, nobody expects you to be nonchalant about this."

"I'm not talking about what anybody expects," she said. "I'm talking about how I feel."

Then she surprised me by saying "yes" when I asked if she thought a tranquilizer would help. When one eyedropper's worth of Xanax knocked her out, I knew she couldn't be left alone anymore.

The next day I threw a few things - all the wrong things - in a tote bag and moved back in to my old house. I had the last two weeks of December off and I figured I could use those up and then start on next year's vacation. I had no idea how long this would go on. In a way, it was like giving birth; you don't know when it will end.

The next day Mama roused herself and murmured, "Going to work now?"

"No, I'm here now; I'm here from now on," I said, more grimly, more firmly, than I like remembering.

Mama could be unfair, supercilious and disdainful. On very rare occasions she'd spit out one single word of profanity, leaving the target of the onslaught bathed in that fiery, stinging syllable.

But she never raised her voice. Nevertheless, she could obsessively bore in on the smallest detail, putting in her cross-hairs some poor, hapless, muddle-headed person's vaguely incorrect or insensitive remark, grilling them like a high-priced lawyer or switching gears to baldly accuse.

"Why do you lie?" she'd say to Rose, her longtime maid, an ageless German immigrant who clearly couldn't read and was otherwise unemployable.

Rose was fond of spinning yarns about anything and everything, and for the 20 years that she came to the house twice a week, my mother called her on every minuscule equivocation.

"That's not the way you told that story last time," Mama would say to her, absently adding, "You forget your own lies."

But lies weren't a small thing to Mama. She couldn't stand them and absolutely refused to tell them herself. "I'm not a coward," she'd say.

One Sunday, when I was 8 or 9 years old and we were driving home from visiting my dad's relatives in Tampa, I first heard her views on religion, not to be confused with conviction.

Mama's arm was lying along the back of the seat of our '53 Plymouth, a car she hated for being ugly, and I was in the back seat, idly plucking at the skin on her elbow. She was gazing out the window. My caresses must have been soothing, for she was relaxed and a little sleepy.

"Do you believe in Jesus, Mama?" I asked her.

"I believe he was a great man," she replied.

"Do you believe in God?" I asked.

"No, I really don't," she said, still looking dreamily out the window.

"Aren't you scared?" I said, feeling a tight pinch in my stomach.

"No, I'm really not," she said. And that was the end of that.

As much as I completely and totally adored her, her off-center traits were her most compelling. Even when things were going well, there could be a certain tension caused by one of us waiting for the other shoe to drop. I know I made her tense, too, with my impatience and tendency to become shrill. I'd get that way when I thought I knew what she wanted but it wasn't what she wanted, yet I was so sure I'd understood what she wanted.

For the most part, what she said was what she meant. I just didn't always know what she meant.

One afternoon we were quarreling over finding her a bungalow - her term - closer to my house in Clearwater. This would never happen, essentially because she would never leave St. Petersburg, where she'd lived since she was 3 years old, and she was driving me crazy with these time-withering house-hunting expeditions. I was beyond frustration with her, and said tightly, "For some unknown reason, you simply don't trust me."

She looked at me in disbelief, was momentarily speechless, and then she said, "My God, Linda, you're the only one I trust."

"Oh," I thought. Okay. And that was that.

When the end came at 8 a.m. on that cold, rainy morning, I was caught off guard. How many times had I anticipated finding her dead as I drove through the shortcuts to her house? How many times had I called out her name as I unlocked the back door, expecting to hear nothing? But I'd never been able to hold the imaginary picture in my head, so seeing her truly dead left me stunned and vacant.

She died, I know, as she wanted to - quietly, no wailing relatives, no big deal, slipping away while no one was looking.

I've always been an early riser and a light sleeper, and when I moved back home I camped out in the living room, where I could see her in bed, and then I'd walk into the room every few minutes to check on her, just as I did that morning. The last time I'd walked in, she was alive; the next time she wasn't. I was stunned by the sheer quietness of her death.

Now, more than four years later, I'm frankly surprised how losing her has affected me. The first year wasn't as hard as I'd thought it would be, but now her death often seems like yesterday. In fact, as time goes on, I miss her more. Sometimes the feeling is so acute that it takes my breath away.

One night last March I woke up about 1:30 a.m. and saw that my husband wasn't in bed. I thought, "Al and Mama must have fallen asleep watching TV, I'd better go wake them up." I found my husband crunched up on the couch, snoring blissfully, but the more I looked for Mama, the more confused I became. Finally, I asked myself, "Is she gone?" and like a gentle wave, I remembered she was.

Once she had me read a passage from Virginia Woolf's diary that said, basically, when you get tired of jumping over fences, take them down.

"No more fences, no more jumping," Virginia - and Mama - said.

So that's what we did.

After all, she was my mother, and I was her daughter.

- Linda Humphers was born in St. Petersburg and is editor of a trade journal for shopping center executives. Her daughter and husband promise to uphold her last wishes, and she, theirs.

[Last modified March 24, 2005, 11:22:03]