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.

Waves

One of the best books I read about grief last year, aptly titled About Grief (by Ron Marasco and Brian Shuff), says that grief does not proceed in linear stages, but rather rises and falls like waves or a roller coaster. You don’t get to one stage and then move on until you are completely over death or grieving. It ebbs and flows basically forever.

I was reminded of their wisdom last night as I was putting Maya to bed. “I have a headache,” she said to me after I’d finished reading her Soft Blanket by Jane Yolen. She’s had a runny nose for 2 ½ weeks and also has pink eye.

“Are you sick?” I was poised to feel her forehead.

“No, I just have a headache because I miss Mommy,” she answered, her lips curled downward.

“Me, too,” I said.

“I miss Mommy,” she repeated.

I crawled into bed next to her and pulled Verna’s picture, inside the balsa wood frame decorated by Maya, off the headboard. “Have you had dreams about Mommy lately?” I asked her.

She shook her head.

“Take a look at Mommy’s picture.”

“I miss Mommy,” she said again. “I want to hug Mommy.”

“I miss Mommy, too. So much,” I said. “You can still hug Mommy in your heart. Always.”

She smiled, gazed at the photograph, which was taken at Disneyland just before Christmas 2009, and said, “I love you Mommy.”

I should have known Maya was grieving more deeply yesterday afternoon. We were doing the grocery shopping when she said to me, “I wish I’d been there when Mommy died.”

“Well, you were there, Maya. You were upstairs in bed.”

“But I wasn’t downstairs,” she said.

“I know.”

This morning she woke up with sadness etched across her entire face. I thought she was sick. She got up and almost curled into a ball on the floor at the foot of the bed. “I miss Mommy,” she said. “I don’t want to go to school. I miss Mommy.”

“How about a hug?” I was clad in my bike shorts, headband, and light blue North Face t-shirt.

She shook her head.

“I’m not sweaty anymore.” Maya knows to avoid me for I usually put in an hour on the Life Cycle.

But she slowly came over and buried her head on my shoulder. She started sobbing. “I miss Mommy,” she wailed into my shirt. “I want to stay home Dadda,” which is what she calls me. It was the first time she's cried since Verna's death seven months ago today.

Her sadness settled over me, but I had visions of watching a movie together and then doing some retail therapy at Claire’s (a company in which I should own stock) before taking her out for ice cream.

“How about a play date with Maya (her best friend) after school?” I asked.

Maya perked up and grinned. “OK.”

Maya’s mother, Michele, invited my Maya over practically before I made the request this morning just after 8 AM.“No problem,” she said, two words that immediately comforted my Maya, who was listening on speakerphone.

So I ordered three picture books on death and grief from Amazon, though I still think the best is Liplap’s Wish by Jonathan London, one I’ve read to her a few times. But I wanted to do something. A co-worker also suggested I call the formerly known Center for Attitudinal Healing in Sausalito because the center offers sessions for preschoolers like Maya.

I know grieving is a long-term, maybe permanent condition. It comes in waves, the surf crashing to the shore. Again and again and again.

Cosmic Stars

Our emotional roller coaster continues.

Maya sat on the living room floor this evening with me next to her and Verna's sister-in-law, Donna, on the couch. Miguel was at soccer practice after having spent the day with me and a buddy of his at a water park. Verna was asleep on her special recliner chair right behind us.

"Mommy's going to die," Maya said, lying on her back.

I got on my knees and edged towards her. "Yes, she is," I said. "But she will always love you so much. And she always be able to tell you how much she loves you. She'll be a star in heaven--"

"--Just like Grandma Chela," Maya interrupted. Verna's mother died in October of 2008, and we've always told Maya that she is a star in heaven illuminating the cosmos (but not in those words).

"That's right, Mommy will be a star in heaven," I responded. "I hope not too soon. But then we can go outside every night and see which star is Mommy shining down on us."

Maya looked up at the ceiling and said, "There's Mommy. Let's pretend Mommy died." She waved. "Hi Mommy."

Verna suddenly woke up and said, "Hi Maya."

Our hospice social worker said when these moments occur to take extreme advantage, which is why I engaged Maya and affirmed for her that, yes, Mommy is going to die. I tried to maintain an almost light or humorous demeanor as she and I talked. Donna, however, turned towards the window with tears in her eyes. Later, she and I held hands and I admitted, "I almost lost it out there with Maya."

But Maya knows what is happening even if she can't fully digest what death means. Last week, on the day Verna and I found out she might only have a few days left, I was driving Maya to her 1/2 hour swimming lesson after preschool.

"When we get home," I said, "we can see how Mommy's feeling."

"Mommy's going to die," Maya said. "And I'm going to be sad."

I reached for the proverbial brass ring and said, "Yes, Mommy's going to die. And we're all going to be sad. But we'll always have Mommy in our hearts, and she will always, always love you very, very much."

Yes, Verna is going to die. Sooner rather than later. Just not yet. Today her pain level hovered at a seven (on a scale from 1-10, with 10 being the most pain), she said, and didn't subside very much even with all her pain medication. Aside from insisting on going out to help Donna bath our dog who'd thrown up on herself in her kennel last night, Verna slept or was in a foggy state for most of the day. So tonight, just before I helped her upstairs to bed (she still prefers to sleep in our bed mainly because Maya, who shares a room with us, wants her around), I said, "Verna, where's your pain level right now?"

"Seven," she answered.

"Is it unbearable?" I asked.

She clearly shook her head. We have an agreement that once her pain becomes unbearable, she wants me, as her healthcare agent and POA, to instruct hospice to steadily increase her pain medication and cease the steroids, both measures that will hasten her death.

But tonight she did not hesitate to move her head quickly from side to side against the hospital bed pillow. Sometimes non-verbal communication is a beautiful thing.