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

THE ILLUSION

Time isn’t precious at all, because it is an illusion. The more you are focused on time —past and future — the more you miss the Now, the most precious thing there is.

~ Eckhart Tolle, The Power of Now

Of all the resources we have discovered since last June’s diagnosis, one of the most invaluable has been the Palliative Services division of Hospice of the Valley. Jamie and I have a long relationship with this fine organization. When it was clear that my mom’s life could not be sustained without constant medical intervention, we turned to Hospice of the Valley. Its counseling services helped me work through my grief after my parents’ died a month apart four years ago. We have dear friends who work there. Jamie even did consulting for HOV in the 1990s.

The Palliative Services is a few steps back from actual hospice. It comes with a 24-hour hotline to call with questions or to ask for a nurse to come by. When we signed up in December, we were assigned a social worker, Sonya, and a nurse, Tania. The Palliative Twins. We met with them face-to-face soon after we signed on. They call to check on us from time to time, though mostly, we play rousing games of phone tag. We haven’t felt an urgent need for their services, but as we’ve been crawling along on the dark path that is ALS, Sonya and Tania were like twinkling lights in the distance. We knew those lights were easy to get to. It was comfort enough.

Recently Nurse Tania left a message suggesting it was time for another home visit. After our typical game of tag, she finally caught me with phone in hand at the end of a long day. “How’s Jamie doing?” she asked. “What’s going on with you guys?”

So I told her: Jamie can’t get any good sleep. He’s uncomfortable in his body. He can no longer cough or sneeze. His appetite is waning. His arms no longer work, and his legs are swollen. His hands are going fast. Breathing is deteriorating. Talking is more difficult. We’re now the owners of two new medical devices: a cough-assist machine and a shiny new BiPAP. I didn’t say the words, but I think she heard them in my voice: “I am worried. And scared.”

Tania was silent for a moment,  then said: “Wow. Those are big changes from the last time I saw him.”

Once you get a diagnosis like ALS, time takes on a surreal dimension. Or perhaps better said, no dimension at all. This human construct of quantifying the revolution of the earth and measuring its journey around the sun is a conceit and a colossal joke. Time is not rigid like a ruler, but more like the liquid in a measuring cup, which can be dumped with one quick flick of the wrist or poured out in an excruciating slow trickle.

It’s like a piece of complex music. On paper, the measures are clearly delineated. Tempo is suggested. Allegro. Andante. Adagio. We hover at the edge of the score, clutching our instruments, tense, completely at the mercy of a crazed, unpredictable conductor.  Some bars contain so many notes that mustering the required energy, breath and dexterity seems impossible. (How many errands can I cram into the four-hour window that the caregiver is here?) Prestissimo!

We want to slow those quiet morning hours after the night caregiver has gone and before the chorus of daily activities has unleashed its greedy howl. It’s our time for coffee and conversations both pragmatic and profound. But the crack of the conductor’s baton will not be denied. Andante!

Those damn abductor wheelchair pads that were prescribed to Jamie more than SIX WEEKS AGO still have not materialized. We endure the cacophony of bureaucratic excuses that inevitably is followed by the hush of unreturned phone calls. Hold your breath. Lento. Larghissimo!

Wait, what? It’s already time for bed?

When was the last time Tania saw Jamie? December. Just before the holidays. Back when he had upper body strength. When he could stabilize his legs and use his arms enough that I could help him into bed. When he could still feed himself. When he could use the computer, and work, and talk on the phone for hours without becoming exhausted. When I didn't have freak outs every time I left him home alone. When he could scratch his own face and push his glasses up on his nose. When we lived entire days and nights at home by ourselves, just Jamie and me.

“Do you think he’s ready for hospice?” Tania asked.

My instinctive reaction, while silent, was emphatically emotional. What a ridiculous question. Of course not!

But then the rational mind kicked in. What does “ready for hospice” even mean? Technically, I know it means “six months out.” But what criteria mark the time of that arbitrary measure? I had no idea. Tania suggested a home visit from Dr. Terry.

So last week we had a visit from Dr. Terry. We immediately liked and trusted him. He was knowledgeable and experienced, direct and compassionate. No spoonful of sugar coated his descriptions of what we should expect, how the disease will affect the body and mind. He explained what hospice will do for us. How we will have the support we need, and the control we want. Unvarnished information, delivered just the way we like it.

The trajectory of this disease is completely predictable. However, no surprise here, the time line is not. Beginning hospice is a delicate decision, Dr. Terry said. You don’t want to enter too soon — Medicare regulations and all that. Neither do you want to wait too long and not benefit from the full hospice offer.

But… no, Dr. Terry told us. Jamie is not ready for hospice. Not yet.

We have no idea how the word “yet” is measured. Then again, time is not, nor has it ever been, our main focus.

Today, we are enjoying the company of Jamie’s sister, Jan, and his brother-in-law, Stelios, who are visiting from Greece. Later this afternoon, we will visit with Jeanine, who has driven over from California for some family time. Tonight, we will exclaim over how much Audie Rae has grown in two months— she arrives tonight with her parents, Sonnet and Chris.

We have right now. And we are constantly being reminded that "right now" is the only time we ever have.

Love,
Maren & Jamie