The Grace of Being There

...But I'm thinking of what Sarah said 
That love is watching someone die 
from "What Sarah Said" by Death Cab for Cutie
Five hundred miles away in another city, my mother-in-law Josephine lay dying.  My husband David--taking turns with his brother and with our eldest son--sat by her bedside in the ICU, watching, holding her hand, and talking reassuringly to her.  Josephine did seem to respond to her sons' and grandson's voices and to their touch.  Sometimes she even fought her way to a semi-consciousness, opened her eyes--unfocused and unseeing--and even attempted to raise her hand before once again lapsing back into a deeper haze of unconsciousness.  Unconsciousness had descended upon Josephine immediately after her emergency surgery on July 1 and would linger until her death.  The emergency surgery--for a perforated colon--had revealed for the very first time, a very advanced, metastasized stage 4 colon cancer--a cancer that had already spread to abdomen, lungs, and liver.  By July 8, the same cancer killed her.

Death is sometimes that way.  Swift and sudden.  With little warning.

But then again, in some ways Josephine's death was anything but sudden.  Josephine was strong; she fought valiantly for her life, despite the overwhelming odds against her.

When, according to the clear instructions Josephine had left in her advanced care directive, the respirator--which doctors had assumed was keeping her alive--was turned off five days after her emergency surgery, and the tube removed, Josephine didn't stop breathing.  Instead, she continued to breathe on her own.  Not just for the revised prediction of a few minutes or an hour, or even a few hours, but for many hours.  And then a day, and then more than a day.

Despite her earlier, healthier conscious-self's wish that she might die swiftly in a situation such as this, this unconscious, terminally ill Josephine kept clinging to life, strongly and resolutely, hour after hour.

Our midwife told me years ago, as she reflected on her new job as a hospice nurse, that the process of dying is a lot like the process of giving birth.  Both involve a hard labor, a struggle in recognizable stages moving toward an inevitable end--the moment in which someone transitions into or out of life on this earth.  Like a midwife shepherds and supports the laboring woman as she struggles to bring a new life into the world, ideally someone--a hospice nurse or family member--is there to support and shepherd the dying person safely, respectfully, calmly, and competently through the process of its culmination.

Josephine, despite being formally signed into hospice care, had no dedicated hospice nurse--no "midwife" to shepherd and support her through this her process of dying.  Instead, for better or for worse, she had three of her closest family members supporting her.  And a rotating team of nurses, first on the ICU, and then on a regular hospital unit--where Josephine was moved because the labor of dying was taking longer than expected.  Family members--themselves supported by Josephine's friends and neighbors--not only made the many required decisions (with the help of medical personnel, friends, etc.) along the way, but also, more importantly, were there for her in a personal way.  Talking to her.  Holding her hand.  Just being there. Making sure she was comfortable.  Ensuring that she got her pain meds on time.  Asking for a warm blanket or whatever.  As is often true, sometimes it's not what you do.  It's simply the fact that you are there.  Showing up and staying close by.  After all, "Love is watching someone die."  Being there as they die.  That's what's important.

And so Josephine passed away peacefully, with her son David sitting by her side, in the very early morning of July 8, one week after she arrived at the hospital, one week after her emergency surgery, and one week after she'd been diagnosed with stage 4 colon cancer.

The Saturday morning that started this process--the Saturday morning that Josephine arrived at the hospital (with a close friend) via ambulance for emergency surgery--we'd gotten a phone call saying that Josephine was headed into emergency surgery.  And then later, another call to inform us that she'd been found to have stage 4 metastatic colon cancer which had already spread to abdomen, lungs, and liver.  At that time the surgeon thought Josephine would likely survive a few months.  Only three days later did ICU and palliative care doctors begin to talk about the possibility that Josephine might never regain consciousness again--that she might never leave the hospital. But that hadn't been given to us yet.

During the time that Josephine's prognosis involved months of life rather than days and hours, decisions were made about travel.  Josephine lived in a city 8 hrs drive--or a 6 hour flight--away.    Jacob already had plane tickets for the 5th because, before the emergency surgery, he'd already been planning to go visit his grandmother Josephine--both to help her and to accompany her on a trip.
 Should David leave and go to Josephine right away on July 2?  Or should he wait a few days until the 5th and fly there together with our son Jacob?

Waiting until the 5th to travel with Jacob made some sense.  Josephine wasn't conscious anyway; she was heavily sedated and on a respirator--and according to the doctors' plans wouldn't even be conscious and awake until Tuesday, July 4th--the day they planned to dial back her sedation, remove her respirator, and bring her back to consciousness.  While it would have been nice to be there when that happened, Josephine wouldn't be alone.  David's brother would be there--being due to arrive that day; and then David and Jacob would then arrive the very next day after that.

Another reason for delaying travel until the 5th was that David wasn't eager to leave me alone with our daughter Awesome--who has intractable epilepsy--until other family members--coming and going with various plans--could get back to our home again so that they could be here with me to help in case of a big seizure.

Because of Awesome's epilepsy, it was never a possibility that we--Awesome and I--would accompany David and Jacob to the city where Josephine lived.  Just being in her grandmother's house, being away from home, having to hear details of Josephine's dying, let alone contemplating visiting her, would have been far, far more than Awesome could have handled stress wise.  To have taken her would likely have resulted in Awesome ending up hospitalized herself from stress-triggered seizures.  Awesome is an emotionally sensitive child; part of keeping her safe with epilepsy is keeping her stress levels within bounds that she can handle.

Epilepsy has a way of making all the hard things of life even harder.  It doesn't just add an extra layer of stress, it seems to multiply stress at the most basic level--often, exponentially.  And when stress multiplies, it becomes a strong seizure trigger.  Seizure triggers increase seizure frequency.  And then increased seizure frequency, in turn, creates even more stress.  It's a vicious escalating cycle.   And so, things that are miserable often get even more miserable with epilepsy in tow.  It's simply a fact of life with epilepsy.  And so we try to damp down stress whenever possible.

The news of Josephine's surgery and terminal cancer diagnosis came on Saturday, July 1. And so, with the heightened stress of her grandmother's diagnosis and the stress that it caused our family, the very next morning, on Sunday, July 2, Awesome had big seizure.

It was a fairly typical big seizure as seizures go lately.  Difficult in ways we've come to expect lately.  But the particulars of this seizure brought home to us yet again, just how hard--practically speaking-- it has become to handle Awesome's seizures.  Ideally, it takes more than one person to administer seizure first aid to Awesome these days.  She's a big girl now, approaching her adult size; and she weighs over 100 lbs.  It's can be hard to roll her over onto her side at times; it takes two persons to carry her during or after seizures, to a safe place.  Her seizures also come on quickly these days, and so, have a high potential for injury.  All this means that Awesome needs to be watched especially carefully these days; and that we have to literally be ready to offer seizure assistance quickly without warning.  Whoever is tasked with watching Awesome literally carries seizure rescue medication on their person at all times.  We wear rescue meds on our person.  And we come running when the Empatica Embrace seizure detection watch calls us--and we have special ring-tones for it

This seizure also brought home to us what an unstable period of time we seem to be in with Awesome seizure wise.

All this was especially sobering to realize as David and Jacob were about to head off to be with Josephine for an indeterminate number of days or weeks.

David was very nervous about leaving me alone with Awesome. As Awesome's big seizures--we don't worry about her little seizures--have become more numerous, we try ensure that there are two of us at home during Awesome's most seizure prone times of day.

Our son Jonas (home from college for the summer, working an internship and a summer job), readily agreed--during the period of time that David and Jacob were gone--to stick close by.  He came up with the plan to work from home for one job and for the other job, only to work during the afternoon hours when Awesome tended to be most stable.  He volunteered to wake and be within earshot in the morning when Awesome and I woke and until lunchtime, and then to be on call during the times he was home in the evening, so that he could respond immediately should Awesome have a seizure.

Despite the arrival home of various family members from various places, it was a stressful and sober 4th of July as we gathered together.  Made even more sober when we got word that Josephine's doctors' attempt to wean sedation so as to bring Josephine back to consciousness, had failed.  As sedation was weaned, Jospehine had became agitated; she was in danger of pulling out IV's, the respirator tube, and monitoring leads.  The doctors had no choice but to put her back under heavy sedation again.  Even more sobering, the doctors were not encouraged by the symptoms they saw under the lesser amounts of sedation.  They suspected Josephine's eyes weren't working.  They posited greater damage from her stroke than they had anticipated.  There was no way to confirm this damage since a CT scan or MRI wasn't possible unless they could actually remove some of the life supports.  But this much was clear: Josephine was not in good shape; multiple organs and systems were compromised.  It was likely she wouldn't regain consciousness and never recover enough to leave the hospital again.  For the first time, they implied that Josephine was likely to die soon.  In fact, they thought it likely that she would die when the respirator was removed.

David and Jacob arrived at the hospital to be with Josephine on Wednesday.  On Thursday the respirator was removed.  And Josephine fought valiantly.  We got regular updates from David and Jacob as Josephine lay dying.  I tried to shield Awesome from all but the broad outlines of what was happening so as to keep her stress level lower.  Thankfully Awesome didn't have any additional convulsive seizures that week.  Instead, the stress came out in sky high little seizure counts.

Jonas was true to his word and stuck close by.  He was very helpful.  And kindly took his little sister to the park every evening.  He let her poke around in the creek at the park.  And they talked a lot about things that were bothering her.  Awesome really looked forward to her outings every evening with Jonas.  Jonas takes his responsibility for his little sister seriously; he's knowledgeable in rendering seizure first aid to his little sister too.  So as much as it's possible not to worry, I don't worry when she's with him.  But I do keep my purse and car keys at the ready, just in case.  And I put my shoes on when they leave, so there would be no mad dash to find shoes if she should have a seizure while out with Jonas.  I'd be at the park lickety-split.  And be there for her post-ictal period and should things get more difficult.

On Friday night the 7th, I'd talked to David before going to sleep, Josephine was showing signs of being in the final stages of dying.  David asked for warm blankets for Josephine, and insisted on pain medication every four hours.  He advocated for his mom.  And slept in the chair beside her bed, his brother having gone back to the hotel, and Jacob down the hall to a room with a bed that the hospital provided so that he could be close by.

At 4:15 AM on Saturday, July 8, David woke as a nurse came into the room to take Josephine's vitals.  Josephine was still breathing, her vitals were weak, but she struggled on.  As soon as the nurse left, David went back to sleep in the chair beside Josephine's bed.

About 45 minutes after David had woken to see the nurse take Josephine's vitals, and then had gone back to sleep, suddenly at our house 500 miles away, the fire alarm on our whole house security system sounded.  Imagine a normal fire alarm whose volume has been doubled and then overlaid with a police siren right there a few feet away--and that these alarms are placed in multiple places in your house hallways--and you'll have an idea of just how loud the alarm was that woke us.   I, Jonas, and Rani (our adult Nepalese adoptive daughter) sprang from our beds, bleary-eyed with sleep but pumped with mega amounts of adrenaline, in an absolute mind-numbing panic.  We went from deep sleep to fight or flight mode in one second flat so that it was impossible to think a coherent thought; it was made more stressful by the fact that the alarm that was so loud it literally physically hurt to hear it.

It took us five minutes to manage to get the alarm disarmed--Jonas and Rani had done a quick search of the house for fire first--which I trusted them to do--while I tried to gather my thoughts enough to remember HOW to turn the fire alarm off.   Amazingly--and somewhat alarmingly--Awesome slept through the whole thing....  Which only made me worry.  Was she in a seizure state?  Wasn't that the only way that anyone could sleep through an alarm as loud as this?  I couldn't even go there mentally.  It was too much to worry about.  A dead end of worry with no easy way out.  And I dare not check on Awesome by waking her unless I were ready to risk causing a seizure by stressing her with worry about a possible fire or by risking sleep deprivation if she couldn't easily get back to sleep.  I decided I would wake her only if we had to remove her from the house....  There was no easy solutions.  Just more risk of seizures.  I decided in the end not to worry about the fact that she could sleep through the alarm--and decided to presume she wasn't in a seizure state..   Perhaps it was a mercy of sorts that she slept through it all.  We'd take all the mercy we could get.

After we finally managed to get the alarm turned off (no fire department on their way, thankfully), then Jonas, Rani, and I checked thoroughly inside every room of the house (including checking electrical outlets for signs of trouble), outside (the roof with flashlights), basement, and attic for any signs of smoke or fire.  We found nothing that was remotely smokey or problematic.

If there was no smoke or fire, then why had the alarm sounded just then?  It had been at least 5 years, maybe more, since we'd had a fire alarm malfunction.  And a malfunction had happened only 3 times in the 16 years we'd lived in this house.  It seemed very odd to be happening just then.   Like some cruel joke during a time period when things were already very difficult.  But as Jonas, Rani, and I sat in the kitchen talking, sipping hot tea, and trying to calm down enough to go back to bed, Jonas suggested that maybe the alarm went off because Grandma Josphine had died right then.  Perhaps it was her saying good-bye.  Come to make her peace with us before leaving this world.  We thought about how significant that would be if it were true.  And so as we contemplated that, we all went back to our bedrooms and crawled into bed again.

Sometime about the time that we had concluded that all was well in our house and were sitting waiting for the tea kettle, David, sleeping in the chair beside Josephine's bed, awoke.  The nurse was coming in to check vitals again and give Josephine her next dose of painkiller,  Before the nurse could get to Josephine's bed, David turned to look at Josephine, and knew immediately that she was gone.  The nurse and then the doctor soon confirmed that she had indeed passed away.

The next morning, in putting two and two together, we figured out that our house alarm had gone off 15 minutes before the nurse confirmed that Josephine had passed on.   We choose to believe that the alarm was not a random event, but Josephine come to make her peace with us and to say good-bye, before she left this world.

Life is full of mysteries.  And coincidences.  And perhaps, if you choose to believe in them, little signs of grace.  Grace that we all need.  Grace that transforms our many struggles from the beginning to the end of life.  The grace that we offer each other in being there for each other for all our difficulties and struggles.


  1. I love your blog. And I love this post. So spiritual and so beautiful. (Plus a Death Cab quote.) ~Dave, Epilepsy Dad


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