The Edge of Living

I've changed names to safeguard the privacy of residents and their families at the retirement community where I work.

Ellen came home to die. Following major coronary surgery and several weeks at a respite care center, she said simply, "I am tired of all this. I'm in pain. I don't want to be a burden anymore."

I visited Ellen yesterday to deliver her a case of Ensure I no longer needed. I peered into her room and saw mottled skin stretched taut against her face. Her gray hair was brushed back atop her head. Blue veins snaked down from the back of her hands past her bony wrists and forearms.

"I brought you a present," I shouted.

"You did?" said Ellen, who is in her late 80s.

I walked into her bedroom, with eight crosses affixed on the wall above the light switch, a rosary dangling from the portable table in front of her.

"Me."

She lifted her hands at me, palms up, and her eyes widened. She smiled brightly. "I'm glad you're here," she said.

"I dropped off some Ensure," I told her. "I don't need it anymore."

I gulped and held back the tears. I am not going to lose it in front of a dying woman, I thought. Ellen started mumbling about a girl who worked for her and needed to get home. Then she explained the large Impressionist painting of three girls in their Sunday best white dresses, bows in their hair, on the wall next to the crosses.

"The girl there," she said, pointing to a figure in the center of the canvas, "was a neighbor of ours, lived behind us. Her mother was the artist."

"Are you using your rosary?" I ask. "It takes a Jewish guy to make sure you are praying, Ellen."

She smiled again. "Well, yes, that is something you would do." She brought up the worker again and I just nodded. She raised her bony fingers towards me, as if she was about to make a critical point, and we clasped hands. Her fingers were warm, her life force still flowing.

Ten minutes later I visited Fay, who is also on hospice and in her late 90s. Thin oxygen tubes snaked in a V from her nose to her chest. Her eyes drooped and the skin underneath her chin wiggled.

"Hi, hon," she said as I poked my head into her room.

"Fay, you're looking good. Nice to have you back." She'd spent a night in the hospital last week after she'd had difficulty breathing.

"Thank you, hon," she said. I explained to Fay and her two children, Janet and Bob, that they she should not hesitate to order trays and let us know how we can best accommodate their needs. I reminded them that all tray services or guest meals are complimentary while a resident is on hospice.

Janet asked me, "Can I come down at 5:45 after Mom has eaten and get some food?" Dinner closes each night at 6.

"Just tell the hostess I said it was OK," I answered.

I'd first met Fay at Casino Night about a month after I started working here in late 2009. She'd been depressed about her failing body, cancer, and weekly blood treatments, but she'd dragged herself to the evening's festivities. She later told me that my associates and I helped peel away her curtain of despair. "You helped save me that night," she said.

I grabbed her hand just before I left and said we would do whatever she needed. Her eyes darted as if she were preoccupied, but I sensed she wasn't going anywhere anytime soon.

As I left her room and breathed in the stillness of the hallway, my mind focused on hospice, transporting me back to last June, when Verna's oncologist firmly suggested we contact hospice so Verna could have access to 24-hour almost on-the-spot care. The conversation, the images, and the words still imprinted on my brain, when they told us we were looking at two or three more months.

"But," the oncologist said, "I'd love for you to prove me wrong.

Verna died almost three months after her oncologist's final diagnosis and recommendations.

Ellen and Fay are at the beginning of the process, before the round-the-clock administration of pain-killers, conversations about feeding tubes, hushed words about increasing the doses of morphine or Ativan or some other narcotic. I ache for their families, for the decisions they will soon confront or mull over.

I feel sad for them and it reminds me of the anguish I endured last summer. But, on another level, I felt slightly blissful after I left Fay's apartment. Not because I may have eased their suffering (it may beyond anyone's control now), but maybe because I felt how strongly their spirits pulsed as each braved life amid what could possibly be an imminent death. Both women seemed so present, even if Ellen's mind was foggy. And they pulled me into that Zen-state and reminded me yet again that I have a role to play here: caregiver. Or I could just listen to them talk or ramble as they prepare for another journey on the edge of living.

Stayin' Alive

One of the songs playing lately on the soundtrack that loops endlessly in my brain has been “Stayin’ Alive” by the Bee Gees. I close my eyes and visualize John Travolta strutting his disco king stuff to the high-pitched warbling of Barry, Maurice, and the other brother.

“Aye-aye-aye-aye, stain’ alive…”

Staying alive has been on my mind because Verna’s oncologist told us last Tuesday that we should contact hospice.

“Are you saying this is the beginning of the end?” we asked.

“Yes,” she said. “Now, I don’t know how long we’re talking about. Could be a few months, two or three, but we just don’t know.”

I tried to pose a few more questions, but the words came haltingly as the tears welled in my eyes. I looked over at Verna in her hospital bed and she was also crying.

So we cried, tried to breath, and cried some more as the reality of the doctor’s words seeped into our consciousnesses. The cancer support manager, who no longer even cares for breast cancer patients but sees Verna because she adores her, asked Verna to share her understanding of what the oncologist had said.

“But I’m not ready to die,” Verna said after she answered the cancer support manager. “I have a lot left to do.”

“And that’s OK,” said the manager. “But sometimes it doesn’t matter how hard we want to live.”
Verna mentioned our renewal of wedding vows, planned for July 24, the wedding of our nephew (for a date to be determined), and the wedding ceremony of one of our closest friends in late October.

As the anxiety and anguish of the moment dissipated and we retreated to the comfortable confines of sarcasm and dark humor, I said we were definitely having the renewal of vows ceremony. “I can always do it alone.”

But I am pretty sure Verna will be there. Physically there, that is. Maybe that’s the hardest part of this latest body blow, the highly unnerving uncertainty. There is no way for anyone to predict how long Verna has left to live. All her doctor can offer is, “We don’t know.” On the other hand, not knowing is less definite.

The latest chapter in our journey began late last Sunday night just before midnight. Verna’s full body pain had been escalating for a few hours before she finally declared, “We need to go to the hospital.” She was unable to move. She later said, “It feels as if my legs are in vise clamps.”

So I quickly wrote Miguel a note that I’d be back soon (though I doubted he or Maya would wake up) and drove Verna to the hospital, which is 2 miles away. After she was admitted to the emergency room and we met her nurse, Glen, a Filipino native we’ve known from previous visits, I returned home and tried to fall asleep.

Monday was a nightmare. Verna was sedated in a fog of narcotics, wracked with pain. She mumbled half sentences, had trouble swallowing, and her normally golden glow was pale. We met her hospitalist, the doctor in charge of her case while on the 5th floor, and a palliative care nurse, who offered suggestions to further control Verna’s pain. The cancer support manager and a Reverend with the spiritual support team visited and quickly arranged a single room for Verna.

I left to feed the kids and came back later. The nurse was just hooking up Verna to an IV blood transfusion when I split for the evening around 8:45. I was seriously afraid that Kaiser was going to call me in the middle of the night to say Verna had died. She looked that ill.

I dragged myself out of bed a 6 am and hopped on the Life Cycle. I stuffed the iPod ear buds in and opened my book as I pedaled into a relative state of escape and relief. Suddenly the phone rang. The caller ID read ‘Kaiser’, and I gulped. It was Verna.

“I feel much better,” she blurted out as I finally started breathing again. “The blood transfusion worked.”

Maybe Dracula and his ilk were on to something. The transformation in 10 hours was miraculous. The hospitalist had explained to us that if the transfusion worked it would provide lubrication for her bones, which were rubbing up against each other and causing the intense pain, and re-energize her anemic body.

By Tuesday afternoon we were ready to host Verna’s oncologist and the cancer support manager, both of whom shed nearly as many tears as we did. The oncologist explained that hospice would make it easier for Verna to manage her pain and avoid returning to the hospital.

“And we’re going to put you on a low dose chemotherapy pill because we’re not giving up,” the oncologist added. “I would love for you to prove me wrong by living a lot longer.”
So Verna’s challenge is anything but simple. She needs to stall death by staying alive. Somehow I know and feel she’s up to the challenge.

“Aye-aye-aye-aye, stayin’ alive…”