August

When we say it’s a miracle that mom is still here, it’s for a reason.  I think it’s safe to say, August was one of the hardest months of our lives (though April’s coming in at a close second).  The first night out of surgery gave us a false confidence that mom would be back on her feet in a few days, just as the doctors had predicted.  Instead, that first night marked the beginning of a downward spiral, from which she would take almost four weeks to fully recover. 

 

 Shortly after surgery and a recovery period in ICU, they moved mom to her own room, and to our surprise, they didn’t hook her up to a pulsox machine to monitor her breathing/pulse, despite having undergone major surgery on her BRAIN.  We immediately asked for one, and were reluctant to leave her alone since she seemed fairly ‘unstable’ at the time.  Once back at the hotel, Diane, Erin and I drafted our bunking arrangements so that one of the four kids would be with her, just in case.  Diane was first up to bat; E and I were second and third in the order, with Craig taking the clean-up spot, trading nights on the hard pull-out couch just to make sure she was okay.  Dad rounded out the order by filling in as relief pitcher during the morning and afternoons.  This was our routine for nearly a month.

 

Needless to say, our nights there were exhausting.  She’d forget to breathe which would trigger an alarm on her pulsox monitor.  We’d quickly have to help her puff into an inspirometer to keep her lungs inflated.  When she developed a rash, we were up every 15 minutes helping her put on Benadryl or scratching her back.  (She’d often say, ‘Oh Jill, that’s exquisite’.) During the day, we were in charge of turning her, bathing her, making sure she drank the appropriate fluids (she was on restricted water intake for most of her stay) and ate a full meal.  Most importantly, we were in charge of getting mom back on her feet, starting with her brain functions.  Days after her surgery, mom was barely herself; the blank stares were the hardest part of her recovery.  She didn’t recognize us, couldn’t put names to faces, and so on.   There’d be occasions when she’d look at us with an ‘I don’t know who the hell you are, or why you’re in my room, but I’ll sit here and endure it until you leave’ kind of gaze.  We’d each take turns holding her hand, but often she’d pull away.  One time, when dad asked her who I was, she looked away and mumbled I don’t know that person.  She then said I was her nephew.  (Double ouch).  We put up pictures of the family, the house in Stilly, our dorkie dogs and kitty cats, etc. to help jog her memory, and motivate her to get better.  She'd have lucid moments where she'd be roughly the same old mom, and then just as quickly, relapse back to being virtually catatonic.   One day, in particular, stands out.  This was the day she turned to me and asked for some water, and at that moment, I thought all would be okay.  I quickly called everyone to let them know she was ‘back’.  Unfortunately, her moment of lucidity was short-lived, and she quickly fell back to a more kid-like state, where she couldn’t follow simple instructions like ‘spit out your toothpaste’ (she’d end up swallowing it). 

 

The doctors were less than helpful at first, and responded to our queries about her lack of affect with answers like ‘don’t worry, that’s why you pay me the big bucks’ and ‘you guys are trying to predict the future too much’.  Frustrated at the progress and unable to confide in our mom, the five of us would resort to hallway discussions where we’d strategize on ways we could help (e.g. hanging photos, etc.).  Call it getting our ‘bang for our buck’, but at some point, the doctors discovered that her relapses were likely due to low sodium and potassium levels, which were also causing small seizures.  After reducing her fluid intake to 500ccs/day, she slowly but surely came to.  We quickly became the water police, and would alert her nurses (who seemed rather clueless to the plan) that she was not to exceed 500ccs.

 

In addition to the problems with memory, she also had a hard time detecting the left side of her body, something the medical field calls ‘left-sided weakness’.  The tumor was removed from her right frontal lobe, impacting everything on her left as a result of the brain’s mirror-image phenomenon.   It was funny (in a sad kind of way) to watch her move her right leg when directed to lift her left.  The left-sided weakness affected her vision as well, so that she was unable to see or recognize things on the left side of her peripheral vision.  There’d be times I’d stand to the left of her, and have the real sense that she didn’t know I was there.  We would massage her left leg and hand in order to get her feeling again, and taped pictures in strategic locations so that she’d have to turn her head to look. 

 

It seemed like weeks until mom was well enough to walk.  Her balance was off, and she couldn’t move her left leg (or both of her legs, for that matter) once we’d get her standing.  The short walks to and from the portable commode were exhausting for us all.  There were a few times when she’d collapse before reaching a chair; it would take all five of us to get her back to bed.  Again, the hospital staff was less than helpful.  Rather than encourage her to take one step at a time, they’d tell her (in a not-so-soft voice) that she couldn’t do it and that she had no business being out of bed.  Yes, walking was a struggle, but how do you improve if you don’t try?  Scaring her sure didn’t help!  (Funny enough, the day after being told she couldn’t walk, mom was walking down the hall – a major F-you to Nancy, the naysayer.  Never tell a Lawler they can’t do something.) 

 

Anyway, on top of physical therapy, we were also in charge of her basic upkeep, including ‘turning’ her to prevent bed sores, and bathing her.  It seemed their idea of a good wash was to sprinkle baby powder on her, and hope for the best.  There were several occasions when we’d come back from dinner only to find mom sitting in urine or feces.  On one occasion, the nursing staff left her in a crumpled mess, where she was slouched into the crease of the bed (imagine a pike position) and leaning to the side.  Her face was beat red from a fever.  Man, just remembering that moment … 

 

I’d like to say that with each day, we’d see subtle improvements, but it was more like one step forward, and two steps back.   It wasn’t until the third week she was finally stable enough to be transferred to inpatient physical therapy.  Once there, she thrived, and within a week or so, mom was outperforming everyone there.  She was discharged after a week, and was able to walk from our driveway into our home with the assistance of a walker.  Despite all the ups and downs, mom fought through it and recovered, through sheer will and perseverance.    

 

And so ended our little month of hell where every human emotion was thrown into the mix.  We had our highs and lows, our little fights and moments of real bonding, and, of course, our Mary sing-alongs.  (We, a.k.a. the girls, have a habit of calling our mom Mary or Mar-Mar, if only to annoy her….she just rolls her eyes.  Our dad gets a ‘sir’ or James Joseph.)  Her favorites were ‘Up, up and away, in my beautiful, my beautiful balloon (hit the high note), ‘Goodbye, so long, blah blah blah blah blah blah’ (from the Sound of Music), and, of course, ‘George, George of the Jungle, watch out for that …radiation’.  Yep, she named her tumor George.   

 

We also had tender moments where she’d relay stories of her life before meeting dad.  It was nice getting to know her as Mary Kennedy (and then Lawler) -- the woman she was (and still is) before becoming a mother.   She told us stories from when she was the head nurse on the pediatric ward of a major hospital (in Pittsburgh I think).  Ironically, she specialized in taking care of kids with advanced illnesses, including cancer.  Her stories are pretty heartbreaking, but you can tell through her stories that she loved nursing and would do anything to help her patients, including ticking off doctors.   She told us of the time she pissed off a bunch of doctors by removing the ashtrays from the peds ward.  Though she had many run-ins with the nicotine-deprived doctors, she never gave in and told them to take their habit outside, and away from the children.   She was a pioneer in many ways.   Mom received a Masters in nursing when Masters in nursing were rare.  She also taught nursing in Oklahoma for many years.   

 

Like so many, we’ve always relied on her for medical information and care.  It’s a strange reversal to be handling much of her medical care now.  I look at it as a much deserved pay-back for the years mom and dad have given to us.  Being there for her (and for dad) during this time is the least we can do.  -- J