caregivers

MONI, MONI, MONI

The most massive characters are seared with scars.

— Khalil Gibran
om.jpg

Cypress Homecare Solutions, the agency that rescued us during our care-giving crisis, sent Moni.

“I think you’ll like him,” said the woman who called to tell me who to expect. “He has a really good outlook.”

When I opened the door to him, I thought, “Seriously? This is not going to work.”

Moni is small, a few inches shorter than me, and lithe. Where most of our caregivers have been sturdy SUVs, he is a compact car. I could not imagine him picking Jamie up, much less transferring him from place to place. So I hovered as he did his work that first morning, breath held. Moni is amazingly strong. And competent. It was all good.

You know that cliché about how someone’s smile lights up a room? Moni could have inspired it. His smile never quite goes away. He shined it when he told us we were “in beddy, beddy good hands.”

During his first visit, he pointed to the Om pendant Jamie wears around his neck. “You know what that means?”  Yes. We practice yoga, we told him. We could tell he was delighted. Moni, who is 35, was born in Bhutan, a tiny country wedged between India, where his mother was born, and China, his father’s native country. “I am Hindu,” he told us that day. He sometimes sings us mantras, some of which we know from our yoga teachers.

A few days ago, at our wedding anniversary lunch, Jamie told Zak and me that he had a story to share. We leaned in to hear.

Jamie woke up that morning feeling overwhelmed. He was sick of being helpless, frustrated and depressed and whiny.

“Moni, I am a mess,” Jamie said, full of self-pity and on the verge of tears. “I am just a mess.”

But ... you have had a good life, yes? Moni asked.

“Oh, yes,” Jamie replied. “Yes, I’ve had a very good life.”

Not me, Moni said, still smiling. My life has been full of misery. I have had a very hard life. I have suffered.

Moni’s family left Bhutan in the 1990s, when the rulers began harassing, then expelling, an ethnic population called the Lhotshampa. His parents, fearing a violent revolution, fled with their two young sons. The violence never really materialized, but when they tried to return, the family was refused entry because Moni's parents were not Bhutanese citizens. The family spent 18 miserable years in refugee camps in Nepal and India. Eighteen years of extreme vulnerability. Constantly unsettled. Food scarcity reigned. Water, when it could be had, was unclean. Finding a sheltered place to sleep was a luxury.

I have suffered a lot, Moni told Jamie in his accented English. “My role was to suffer. Not suffering just for me, but for humanity.”

We are all actors, acting in a larger play, he continued. We each have a role. Sometimes we play only one, and sometimes we play many. And sometimes roles change.

“Do you know who Stephen Hawking is?” Moni asked. Jamie smiled and nodded. “He plays two roles. He is a warrior for ALS, and for people suffering with ALS. But he also is brilliant scientist and teacher for the world. He found black holes in space.

“You have roles, too," Moni continued. "You are father to many children. You were successful business man and a teacher. Now you are dying with ALS. Now your role is suffering. You do it for many people, for the world.”

Jamie let that soak in a moment. He suddenly felt less overwhelmed and depressed and whiny. Then he asked Moni: “What is your role now?”

“I know what it is like to suffer,” Moni said. “And now my role is joy. I bring joy to those who are suffering.”

 

HI, BABY!

When you were born you cried, and the world rejoiced.
Live your life so that when you die, the world cries,
and you rejoice.  

~ Indian proverb

Among the slew of family visitors we have recently enjoyed (oh, happy exhaustion!) was Audie Rae, our first granddaughter. She was born on June 25, 20 days after the official ALS diagnosis. We were in Denver to behold her entrance into the world, cuddle her sweet newborn body and witness her first few weeks of life. What a delectable distraction her birth provided.

The timing of Audie’s birth created a metaphor that is so obvious it borders on trite. The arcs of two lives intersecting — one ascending as the other descends.

As Audie learns to manipulate her tiny, long fingers, she grabs greedily at anything within reach. Jamie’s weak, curling fingers crawl up the wheelchair armrest, and it’s increasingly difficult to manipulate the controller. Audie snatches the spoon from my fingers so she can feed herself. Jamie must be fed. She babbles and coos, trying to emulate what she hears. Jamie is losing his ability to speak. We feel the mystery and excitement of Audie’s beginning. Jamie’s passage, equally mysterious, approaches its inevitable conclusion.

The baby and the paralyzed man, utterly dependent on others.

We have been all about dependence lately. All illusions of control have been abandoned, especially as our carefully constructed cadre of night caregivers has imploded.

It is not easy to find caregivers strong enough to transfer Jamie from wheelchair to bed to wheelchair to toilet to shower chair and back again. We’ve needed men. Male caregivers, or CNAs as they’re called, are uncommon enough, but male caregivers willing to work nights? Almost as rare as an ALS timeline like Stephen Hawking’s.

Thanks to our friends at Palliative Services, we have scored big. The first person sent out was Richard, who started doing early morning shifts in February, back when I could still handle getting Jamie into bed by myself. Compassionate and committed, reliable and good-natured, Richard has been our rock. When he could see we needed additional help, he began working night shifts, putting Jamie to bed, tending to his nightly needs, and doing his morning routine. When we needed to add shifts, he did double duty to train the new guys. When Jamie has an issue, he is determined to solve it. “It’s not a hospice thing,” he tells us, “it’s a Richard thing.” It is impossible to adequately express how above and beyond he has gone for us.

It wasn’t long before he felt like family. I could go to bed at night and sleep peacefully, knowing Richard had it covered. And then he was in a car accident. (He’s OK, we’re happy and relieved to say, but out of commission for awhile.)

We had called him during a mini-crisis — Jamie needed to use the bathroom, and he can’t do that without a transfer. In a panic about how to get him on the toilet, I called the palliative services hotline. They got a message to Richard, and a few minutes later he called us — from the emergency room. Because he is Richard, he apologized profusely. Because he’d been in an accident. And was injured. (Seriously, Richard, take care of yourself now!)

Luckily, Audie’s daddy was here to help with Jamie. We got him where he needed to go just in time, but getting back to the wheelchair required the help of Phoenix’s finest. We called the non-emergency 911, again, for a lift assist. That was traumatic enough, but as we recovered, the real panic set in. With Richard out of commission, we had four night shifts to cover.

Thanks to our amazing community, we managed to get through the weekend with help from a fantastic agency, which was recommended by a friend. It found us a male caregiver to work nights on the weekend. A miracle. Then on Monday, we discovered another of our stalwart caregivers also had injured himself over the weekend. Our carefully constructed weekly care plan now had six gaping holes.

Since then, we’ve been scrambling day to day, with lots of help from lots of people. So far, Jamie hasn’t had to spend the night in a wheelchair, an option that was being seriously considered for awhile. Tania, our palliative services nurse, blew up her afternoon yesterday working to get us assistance, along with several other good folk at Hospice of the Valley. Thanks to the ALS Association’s Arizona Chapter, we now have a Hoyer lift, which will allow me to do Jamie's transfers if needed and will broaden the pool of potential caregivers.

We are being taken care of, and we are grateful for all the people who are scrambling to do it. Although we feel as exposed as newborns (maybe more so, assuming infants aren’t conscious of how precarious their existence is), we also feel the wonder of being held by so many people (even though we’re not nearly as adorable as Audie Rae).

Love,
Maren & Jamie