Slipping Into Darkness

This story is 100% true.

April, 2011

We knew if Betty’s life was gonna be saved, we would have to do it ourselves.

After suffering a dizzy spell and falling in her home, Betty (her real name) had already spent six days in hospital being poked and prodded and medicated and imaged and evaluated and, after a somewhat inconclusive diagnosis, was pronounced healthy enough to be transferred to a local nursing care facility to regain her strength and mobility.  She couldn’t walk yet, but she would soon, they assured us.

It didn’t turn out that way.

She was in that nursing care facility, Country Villa in Seal Beach (CA), for 12 long days, during which time she was physically dropped by staffers, denied fluids, overmedicated, underfed and rendered unable to perform physical therapy due to weakness and lack of muscle tone.  They said "She isn’t sufficiently capable of making additional progress" and concluded that she was a candidate for long-term hospice care and would inform the insurance company of their decision. This was bullshit, and we knew it.

Over the first 11 days of her so-called ‘convalescence’ in that awful place, The Artist (Betty’s daughter) and I watched Betty’s health decline rapidly.  She went from being able to sit up on the edge of her bed to requiring a strap around her torso to keep her upright in her wheelchair.  Her mouth was full of terrible sores… she suffered the indignity of a catheter when they decided changing her diapers was too much trouble… she developed a severe urinary infection and was unable to eat any solid food at all.  When we visited her on The 11th Day, we knew that she was in dire straits, and the nursing facility was only making her worse and worse.  We had to do something.

On The 12th Day, I contacted Betty's health insurance company (SCAN) and spent hours on the phone with them, pleading for help.  I told them we were gonna break her out of that awful place and take her to the hospital ER unless they did it for us. To his credit, the agency's service rep was most-excellent and very pro-active, informing me that removing her without the proper approvals would cause a world of legal hurt for everyone. He did some investigation of his own while I held on the phone, confirmed the crappy nature of the care facility, checked with his supervisors and made a crucial decision. He assured me that if the staff physician rejected the family's demands to have her transferred to the ER, the insurance company would step in the next day, take over her care and do it themselves. That's all I needed to hear.

I raced home after work that evening for a speedy shower and change of clothes. The Artist and I jumped in The Beetle and blasted 35 miles up the freeway in rush-hour traffic to Betty’s home to meet up with her husband Don (his real name) and granddaughter and head to the facility.  I made the mistake of stopping to grab a burrito beforehand and was cooling my jets for 20 minutes while the cooks kept screwing up the orders.  When I finally got my food I was livid, because the facility’s visiting hours ended at 8pm and it was already past 7pm.  We hooked up with the rest of the family and raced the 10 miles back to that terrible place.

We walked in at about 7:50pm and noticed the expansive hallways, usually lined with patients in their wheelchairs, were deserted.  We went to Betty’s room and were alarmed at her appearance.  Her skin had the pallor of death, she could barely lift her head from the pillow, her mouth was filled with open sores and her tongue had the color and texture of an eggplant. When Don saw her he was shocked, and after a few minutes of visiting, we exited her room.  Don said “She’s dying… right in front of our eyes, she’s dying. I don't think she'll last another day in here. They’re killing her”  That hit me hard.  I decided RIGHT THEN to do something.

We’d been attempting to reach the staff physician, a Dr. Kim (not her real name) for days to ask for help, but no dice.  So when I walked down the long hallway, looking for someone… ANYONE… to talk to, I crossed paths with a small Asian woman in a white coat with a nametag, obviously a doctor doing her rounds. I spun around and did a double-take.  Could that be her, the mysterious Dr. Kim who refused to return my many calls?  I asked the nursing staffer on duty if that small Asian lady was indeed Dr. Kim and she confirmed that it was her.  I went back to the family standing outside Betty’s room and told them Dr. Kim was in the house and I was gonna talk to her about Betty’s condition and our plans for her.  The Artist begged me to not lose my cool and use a calming tone with her.  I agreed.

When I walked back to the nursing station, Dr. Kim was standing there, making notes in patient files.  From her demeanor, I assumed this was her standard routine, checking out patients after the families had gone home so they wouldn’t bother her with, you know, annoying questions and stuff. I also figgered she wasn’t expecting to be confronted by desperate family members at this late hour. I introduced myself to her and asked why she hadn’t responded to my numerous messages.  Her answer: “I never got your messages. And besides, you talked with my assistants, they should have been able to help you.”  WRONG ANSWER, DOC.

In a calm but insistent manner, I spent the next 5 minutes delineating Betty’s condition, our serious concerns about her rapidly declining health, and our desire to have her transferred to the local hospital ER for immediate care that evening.  The Doc began to blather something about more tests being needed and that Betty wasn’t as bad as we thought.  My response was direct:  if she didn’t transfer Betty that night, the insurance company would take over the case the next day and get her to the ER, then have words with a certain Dr. Kim.  Looking up at me from her 5-foot nothing stance, the Doc's eyes got really big upon hearing me say ‘insurance company take-over’.  Without saying a word, she went over to the night’s Charge Nurse and asked her to perform an evaluation on Betty… she simply wouldn’t do it herself. Bitch.

We walked to the room with the charge nurse who asked us to remain outside while she looked at Betty.  She went in, pulled the curtains around the bed and spent about 2 minutes in there.  She pulled the curtains open, came outside and said “Oh yeah, she needs to go to the emergency room RIGHT NOW."  She walked to Dr, Kim, they spoke for a moment, then Dr. Kim came up to us and said she would write up the transfer order right away and have an ambulance pick up Betty shortly and take her to the ER.

To say we were ecstatic would be an understatement.  Don looked like he was gonna cry, same for The Artist and granddaughter.  We went in and told Betty what was gonna happen and the best she could muster was to feebly lift her head from the pillow, open her eyes, whisper “OK, that sounds good”, then drop her head and close her eyes.  About 45 minutes later, the ambulance arrived and loaded her onto a gurney for the short drive to the hospital.  As the EMT’s strapped her in for the ride, Don and granddaughter took all of Betty’s belonging to their car, and we asked them to go home and wait while we followed the ambulance and helped get her admitted.  We jumped in The Beetle and followed the ambulance onto the freeway on-ramp Northbound.

Now, we’ve all seen an ambulance during emergency patient transports, sirens blaring and lights flashing, warning other cars to move aside.  That didn’t happen. Once the ambulance merged onto the freeway, it took off at over 90mph, seemingly to try and lose us, without lights or sirens, oblivious to other cars around them.  I sped up and started following their frantic traffic-weaving movements.

The Artist is yelling at me:

“AREYOUFUCKINGKIDDINGMESLOWDOWNYOU’REGONNAGETUSKILLED!!!!!!” 

My answer was to shout back:

“NOWAYARETHEYGONNALOSEMEIWANNAKNOWWHERETHEY’REGOING!!!!”

For the next 10 minutes, we raced at way-illegal speeds on the freeway, never losing sight of that lumbering ambulance slicing across lanes, around other cars and going faster, ever faster.  I was gripping the steering wheel like I had talons, hearing The Artist’s shouts of protest in my right ear, eyes glued to the road ahead flying at me through the windshield, hoping against hope that some hapless bozo in a slow-moving Buick wouldn’t change lanes in front of me at 45mph and take us all out.  The Beetle kept the pace, never once placed a wheel wrong, seemed to relish the asphalt dance.

After what seemed like 10 minutes, the ambulance veered off the freeway and onto the correct off-ramp, with us in hot pursuit. They ran several red lights with us right behind them, turned sharply onto a side street and directly into the ER ambulance bay.  We followed them through and slid into the parking lot across from the ER entrance.  We watched them offload Betty, wondering if she had any idea about what had just happened, and walked into the ER to get her admitted.  It was now about 9:30PM, less than 2 hours since we first walked into the care facility to rescue Betty. 

WE DID IT.

The ER waiting room was crowded when we arrived and checked in, with nary a chair to be found anywhere.  After a while we found a place to sit and wait, then were called and escorted to the ER bay where we found Betty awake, propped up in bed, with a buzz of activity around her.  Over the next several hours, multiple doctors and nurses and technicians and others came and went, a blur of medicinal treatment taking place as we watched from our little stackable chairs.  Around 1AM, I grabbed a pillow from the closet, set it on a spare tray table, laid my head down and dozed in a sitting position for about 30 minutes.  The Artist and Betty chatted up a storm, as the IV fluids and meds she’d been given were already having a positive impact on her condition.  Watching me sleep, Betty told The Artist it was the longest time she’d ever seen me not talking or making noise.  She’s funny... I love her like crazy.

By the time 2AM rolled around, the ER tests were completed.  She had an aggressive and dangerous e-coli urinary tract infection, was severely malnourished and dehydrated, her blood chemistry was all over the map, a virulent candidae thrush infection was ravaging her mouth and throat, her blood pressure was fluctuating wildly, her white blood cell count was alarmingly high, she was unable to walk and her condition was extremely unstable.  However, she was responding well to the IV fluids, was eating ice chips and talking and smiling and her beautiful blue eyes were shining and we sat there, marveling at her strength and composure under such dire circumstances.  By 3AM, she was slated to be taken up to her room, so we decided it was time to mosey on back home, get some sleep and come back the next day to see how things were going.  The drive home seemed to take forever, and after only a couple of hours of sleep, I dragged my skinny ass off to work, where I was less than useless. For the entire day.

BUT WE DID IT.

I look back on that 9-hour timespan, from the moment I jumped outta the shower at 6PM to the drive home at 3AM and think, yep, lots of things could have gone wrong and kept us from making what happened... happen.  If my burrito had been made in 5 minutes instead of 20 and we’d gotten to the care facility earlier than we did, I might have totally missed seeing the infamous Dr. Kim and lost the chance to confront her in person.  We could most definitely have gotten in an accident during that insane freeway chase.  We could have lost sight of the ambulance and, if they had not gone where they said they were going (it does happen), Betty would have gone missing, slipping into the darkness and from our grasp as the moon rose and the stars shone and the Earth spun, leaving us lost and seething and desperate to find her.  Lots of things could have happened, but on this one night, everything worked out.

WE DID IT.

Little did we know that Betty’s mysterious medical journey was just beginning, oh yes.  She would spend another 12 days in hospital, then 5 weeks in a convalescent hospital, with the weirdest arc of illness and symptoms any of us had ever seen, not to mention her many doctors.  There were dead-ends for one diagnosis after another, wrong turns and ineffective treatments. At one point, she was considered to be in a chronic degenerative state called encephalopathy that would never improve, and we were instructed to get used to her condition.  You can bet your ass after what we’d all been through, that diagnosis was soundly rejected. We pushed forward and demanded one last test, a semi-dangerous spinal tap, only to discover that we made the right choice. Betty’s illness was finally, FINALLY and correctly identified as spinal meningitis and aggressively treated, with her subsequent recovery almost startling.

Within a week or so she came home with a feeding tube stuck in her belly (don’t ask), a medical bed in her living room, a live-in nurse, a tabletop covered with meds, loss of privacy and a months-long slow-but-steady recovery.  She’ll likely never get back to 100%, but she is strong and determined and is now walking without her walker and cooks and cleans and does most of what she was doing before the day she got dizzy and fell.  Whatever her limitations may be now, we are all grateful for her amazing fighting spirit to get back as much of her previous life as possible, and we marvel at what she has achieved.

For me, the moral of this tale is:  STAY ENGAGED IN YOUR HEALTH CARE DECISIONS.  If we had listened to any one of the many doctors who wrote her off as untreatable, we’d be visiting her in hospice care, looking at the shell of a woman whose health had been lost.  From the night we broke her out of that horrible nursing facility to the day she finally returned home, I kept voluminous daily notes in my ‘Betty Book’: her daily med intake, her doctor’s comments, her bloodwork, WBC levels, food intake, temp and blood pressure, ANYTHING that related to her care.   Every night The Artist and I talked for hours about what we knew, what we didn’t know, what the doctors said and how full of shit we thought they usually were.  But all along, we paid attention, asked hard questions and never EVER took ‘I don’t know’ as a serious answer.  It just didn’t compute.

A lot can happen in a lifetime.  A lot can happen in 9 hours, too.  Every hour, every minute, every second we have in our conscious existence is precious.  Every decision we make has ramifications which are evident and obvious, but that also sometimes fly below the radar and disappear without us ever knowing about them.  Take nothing for granted… not your life, not your significant other, not your health… nothing about our lives should ever be without purpose or meaning, unless you choose to make it so by doing nothing and ceding your life decisions to others.

I like to tell people that I’ve been lucky in my life to have two Mothers-In-Law that I really loved and that loved me back.  The first one has recently left this mortal coil, but after several years of her hating my guts, she finally figgered out (after I spent hours and hours sitting at her hospital bedside) that I was pretty OK.  Betty lets me hang around her house at the holidaze, so I reckon I’m OK by her too.  I’m just glad that The Artist and I were in the right place, at the right time, with the right attitude and drive, to make a difference in her life for the better. 

 

A human being can’t ask for a more useful purpose than that.

“Beginning today, treat everyone you meet as if they were going to be dead by midnight. Extend to them all the care, kindness and understanding you can muster, and do it with no thought of any reward. Your life will never be the same again.” –Og Mandino, writer, speaker (1923-1996)

(Lead image, gracias de www.mjjlawfirm.com; War 'Slippin Into Darkness' and Harry Nilsson 'Think About Your Troubles' videos, muchismas gracias de youtube.com.)