Decisions Making

Sunday we enjoyed the opportunity to visit with a friend from South Africa.  David Tswaedi, former seminary classmate of Richard and former bishop of the Lutheran Church in Southern Africa when we were in Botswana, was in St. Louis.  David had a couple free hours Sunday afternoon and we were able to visit on the St. Louis seminary campus. At the end of our visit David asked if we could give him a lift to a church in St. Peters, Missouri.  “Sure,” we said in good African form, even though we had no idea where the church was. 

In the car Richard got out the St. Louis map.  My heart raced mildly as I remembered the last time he was armed with a map in St. Louis. (See March 9 entry)

I climbed into the driver’s seat and asked, “Are you sure you can figure this out?”

“Yes,” he said, condescendingly, giving me a side-glance and unfolding the map.

As we pulled out of the seminary, we discussed how to get to I-70 which had the most direct route to St. Peters.  Richard relaxed to permit me to find the best route.  I chose I-170 but was plagued with left hand exits that furrowed Richard’s brow briefly.  Soon we were on I-70. 

As we crossed the Missouri River I realized I had no idea which exit to take.  I was totally dependent on Richard’s map reading since the road we were seeking did not have a direct exit from the interstate.  He projected that the fourth exit after the river would be the best option.  He was correct, but off the interstate I failed to get in the correct lane to execute a right hand turn.  By the grace of God, a couple cars at the first light were slow and I could play the jackrabbit to get into the right lane.  Soon we were on the road searching for the church.  Bingo, Richard saw it.  He had successfully read the map, and I had successfully listened!   Progress again!

Setting the Alarm

We were both gratified that Richard did so well at making decisions with the map and in delivering such clear direction. But by the time we returned home he must have used up all his precision brain power.  I was delayed at getting to bed as I completed some writing business for an article I was submitting to the advertizing tabloid.  I thought Richard had simply gone to bed, but the truth came out in the morning. 

Richard invested his waiting time in adjusting his cell phone settings.  He has a spare non-network cell phone beside his bed that he uses only as a clock.  He had set the calendar to alarm at one time and the alarm clock at another time.  On his ATT cell phone he had set his alarm to go off at still another time.  Starting at 5:30 this morning an alarm went off every little bit until we got them under control by 6:05. 

I took a moment of silence while I contemplated what to do with that man.  I decided to simply give him a hug. We then disarmed all the alarms and schedules on both of our cell phones and agreed upon one time that our phones would simultaneously ring every morning.  I never would have guessed that decision-making would be such a target in therapy. 

A Close Clip

Yesterday (Thursday) was the clearest day Richard has had since surgery.  He started the day out saying, “I feel great! I am thinking clearly.”  He was as sharp as my best kitchen paring knife.  As the day progressed, he tapered to be more like a nice quality butter knife, but he still had a cutting-edge wit. 

At bedtime, we talked about plans for the next day.  He offered to give me a haircut since I was looking a bit shaggy.  He has been my primary hairstylist throughout our 35 years of marriage, so I said, “Let’s plan on it.”

Today, Richard sat up in bed and said, “I’m cloudy today.”

I instantly thought – do I want a brain-damaged man taking a sharp instrument to my head?  Should I let him give me a haircut?

I voiced my reserve at the breakfast table.  My children were so consoling.  They came to the comforting consensus, “Dad won’t do anything that a buzz-cut can’t fix.”

They all offered to do before-and-after pictures to document Richard’s prowess with the scissors.  I was afraid they were really thinking of making a bizarre Power Point to post on YouTube.  I declined the photo documentation.

After breakfast, Richard asked, “Well, do you trust me?”

How could I say “no” to such a sincere offer? We chatted further, and I agreed that the children were close to correct in that even if Richard failed I could have it repaired elsewhere. 

I smiled a weak smile and resolved to sit in Richard’s stylist chair.  He draped me with the barber’s cape and set to work. I closed my eyes, as was my usual, to keep hair chaff from flying in.  Snip, snip, comb, part, snip, clip.  Soon he was finished.  

I loosened the clamp on my eyes and peeked out. He was smiling a wide silly self-satisfied smile as he held up the mirror for me to inspect his work.  The mirror only reflected the barber’s cape.  I reached up to try to reposition it, but he kept tilting it down.  He didn’t notice the mirror’s angle. He was grinning with pride at my haircut.  I couldn’t see it very well, so I said it was fine as I scampered off to the shower for a wash. 

After I was out of the shower with squeaky clean hair and with a wall-mounted mirror I could utter the verdict – PERFECT.  It was one of the best cuts he had given me in at least five years.  I gave my stylist a big kiss and “thank you.”

“See,” he declared. “Your brain-damaged husband can still cut hair. It is only the communication I have a problem with.”   

The Week's Snapshot

The sock is finished.

The next one is underway. 

Richard is decreasing his post-op anti-convulsion medication and will be completely finished with it this coming week.  As that medication has been decreasing I feel he has been having an increase in good days.  Once, he actually spontaneously stated, “Things are getting clearer.”   While he has not had Level 4 or 5 (defined in March 6 entry) episodes this week, he was still dismayed when he digressed to Level 3 once or twice.  His progress is a combination of consistently clearer thought or more effective coping with his deficiencies. Either way seems to be a winner.  

Driving Home the Point

The seatbelt locked as I was thrust forward in the seat.  I looked up to see the flash of a dog clearing the passenger front corner of the van bounding off to the ditch.  Richard let up on the break and accelerated back to 65 mph to take us on home last Sunday – his second experience driving. 

Yesterday, Richard drove into Rolla, his first foray into “city” driving.  We needed to go to K-Mart to refill a prescription and to the bank across the highway. Since we could take back roads this third driving trip was bound to be a no-brainer.  He did perfectly until we were in the store.

As we entered we met Richard’s Aunt Darlene.  In the course of conversation he mentioned that the drive to the store was his second driving experience. 

I corrected him bragging, “No, this is your third.”

“Oh, yeah,” he replied with a sheepish look on his face.

I knew he did not remember. When the conversation closed we strolled on to the pharmacy. As we browsed in the store I mentioned to Richard his first drive home from church.  Yes, he remembered the sweet success of the first time.  I asked if he recalled this last week and he went blank. That was when I recounted to him the close call with the dog.  He paused for a bit and then the light bulb went on.  (How very appropriate in a K-Mart that uses a blue light bulb as the store symbol)  He did remember. 

Now on Thursday morning I asked him about his recent driving history, and he was quick to account for all three times stating the dog incident as a marker.  I count that as progress in short-term memory.

Memory loss, brain damage and performance restoration all nudged my mind.  I puzzled if scripture holds an example to testify to these.  Nebuchadnezzer, the first Babylonian king under whom the prophet Daniel served, came to mind.  I have always puzzled at the account in Daniel 4:28-37.  In Sunday school material and in children’s books, I remember reading the tale of the king’s humiliation and subsequent restoration.  The presentations made it seem trite or even whimsical for me. Now I see beyond the juvenile material. 

Richard had genuinely been at risk of a stroke also known as a cerebrovascular accident.  The doctor said the brain tissue around the vascular anomaly they removed was stained as if a small bleed had occurred.  Is that not what may have occurred for Nebuchadnezzar? Thinking that, I have a new appreciation for Nebuchadnezzar’s condition.

Had Richard been a king when he had his rough day (reported on March 11) the court attendants probably would have left him to himself.  After all, we read in the story of Esther just how risky it was to approach the king and how binding his word was.  Had he possessed the power to have me beheaded for speaking to him, Richard could have wandered out to the Missouri landscape in his distemper. 

In due time, King Nebuchadnezzar was restored to his full mental capacity by the grace of God.  In the process, Nebuchadnezzar received an incredible theological education in his adversity. Recovering from his impaired mental condition the king made a unique declaration about God’s majesty and sovereignty. 

Now what does this have to do with our situation? We wait resting assured that God in His grace has all in control.  

Turned The Heel – Pivotal Proof

Back on February 13 I told you about Richard’s knitting project – wool socks – he’d started pre-operatively with the idea he would have it to occupy his recovery days.  Little did he believe that he would be “brain damaged” and thus challenged to perform the knitting.  The knit-purl ribbing of the sock top was a breeze, but the heel with the intricate stitch-by-stitch directions had the better of him. He grew weary looking at it and finally put it away, out of sight, to bury the nagging reminder of his brain weakness.   

Today, March 13, one month later, he dug it out and completed the heel! Happy dancing was in order. I danced not only for that cognitive progress, but the socks are for me.  I am now ½ foot closer to warm toes.  The race is on about which will happen first to facilitate warming my feet – warmer temperatures or completed socks?  Regardless of the winner, Richard now is obligated to admit he is improving!!

Richard and I are moving on to doing some tag team sewing.  We proved our sewing compatibility last week by completing a quilt for our latest great nephew.  This week we are moving on to design and construct TWO quilts for a most delightful reason.  Sarah and Neal are anticipating the arrival of TWINS in three to four weeks.  The twins are 15 months old and joining the family by way of adoption.  The twins are an “at-risk” adoption meaning the final papers will not be completed until after a waiting period to assure no previously unidentified extended biological family members come forward to request the children.  Looks like we will have a full and busy week.  

Dr. Jekyll or Mr. Hyde

We just came out of a couple rough days.  I was ready to throw in the towel, but only if I would get to throw out the patient.  Let me explain. 

Richard had been on two medications post-operatively – one was an anti-seizure medication and the other was an older medicine used to stimulate restoring connections in the brain. At his doctor’s visit Tuesday Richard was instructed to discontinue the anti-seizure med by tapering off.  The connection stimulator could just be discontinued if he felt it had not been making a difference.  Richard immediately stopped the connection stimulator and began tapering the anti-seizure one.  Gradually over the next two and a half days we did see a change, but it took us until this morning (Friday) to get the full picture. 

First back on Wednesday, Richard started to turn grumpy. By bedtime he no longer saw humor in anything, not even obvious word plays as the children bantered in the living room.  Then Thursday morning he started the day like a raging four-year-old.  A grown man with the temper of a spoiled four-year-old is not a pretty sight, so the sensible family members provided ample room for Richard to have things his way. He was growing into a regular Mr. Hyde. By bedtime Richard was beside himself in agitation.  I finally talked him into accepting a backrub, the very thing that I had used with irrational four-year-olds in years past.  He finally relaxed and went to sleep.

Friday morning he arose feeling quite sheepish over the agitation of the day before, but he still felt powerless to avert another such day.  He kept repeating, “I’m so confused.  I’m in a fog.” His blood pressure was fine along with his other vital signs, but his gait was so unsteady that I ordered everyone in the family keep the basement door closed lest he tumble down.  Also, I insisted that he not even think about going to the basement to fold laundry while he was so wobbly.

After breakfast he simply sat in his recliner with his robe hood pulled over his face.  I held a discussion with the talking robe and we decided to resume his connection stimulator medication.  An hour and a half later he put the robe hood back and it looked like we had pleasant Dr. Jekyll back with us. Today has been fine.  Richard is more like his old self, enjoying a jest and a story.  Why, twice in the kitchen as I was preparing supper he even came up to me for a little kissy-face.  Let me tell you, it will be some weeks before I let him put that connection stimulator medicine aside.   

Know When To Laugh

In a nutshell, this week so far has been interfacing with medical care and changes.

On Monday, we said goodbye to Richard’s home-based speech therapist since her insurance-approved time was finished.  We all agreed that transitioning to an outpatient hospital-based therapist would be a good promotion.

On Tuesday we had a return visit to the neurosurgeon in St. Louis.  He completed his part of the disability papers so we could submit them on Wednesday. 

On Wednesday Richard had his first interview with the hospital-based therapist.  Her initial assessment revealed some clear areas to approach for continuing improvement.  After that appointment we headed to the Missouri Veterans Home in St. James to drop off the disability papers. Michael Kleisser and Donetta Iven made our day.  [Could one of you MVH readers, please, pass on to them kudos from us?] We entered armed with papers and plagued with fear and trepidation. We exited recharged with hope and anticipation.  [Tell them – thanks!]

Despite the melancholy weather and other change threats, we had some laugh moments.  Here are three:

When we were driving into St. Louis, we planned to meet a friend for lunch but the restaurant was in the opposite direction from the doctor’s office.  I was making some quick re-routing plans because I was weary of interstate highway driving in the rain.  I decided to turn off to use a state highway to another state highway, both improved roads and the same distance to the restaurant as the interstate.  As I turned onto the state highway Richard scrambled to find the Missouri map in the glove compartment. I was not bothered when he spread it out and refolded it to view the St. Louis metro portion. He asked about my route choice and I waved my hand at the lower corner of the map saying, “It’s somewhere down here.  You know, that road we use to get to Culvers and Starbucks.” Suddenly, he interjected, “You need to turn at the next light. This is Highway 30.” It didn’t look familiar, but he spoke with such clear authority I pulled into the turn lane much to the dismay of the horn-equipped young lady racing up behind me.  As I sat in the left-turn lane at the red light, I knew it was not where I wanted, but Richard was so satisfied with his directions.  I did not have the heart to challenge him.  As I pulled onto Highway 30 I gently said, “This wasn’t the way I had in mind.”  He started to point out another road I could turn on as a “short-cut,” but I said I’d go straight since I saw it took me back to the interstate leading to my destination.  The next day Richard had a hardy laugh when I told him my moral of the story – never trust a brain-damaged man with a map making impulsive route changes. 

Later amid a discussion of job benefits I was bragging to Emory about how clever I was in performing my job as family medical historian. When faced with the admission history form for the new speech therapist Richard simply thrust the form into my hands to complete. I had a list of Richard’s medications in my purse, so I could dispatch the form with haste. Emory looked un-impressed, so I went on to explain that if anyone in the family needed to complete such a form for me there would be no medications to include.  Laura chimed in that such absence of medicines was a part of my professional benefit package as a mom crediting my good health to all those years of lactation.  In the background Richard uttered, “Life sucks.” End of conversation.   

But who could be surprised when noting what Richard had just been up to earlier? He had at times been unable to answer questions with more than a word or two today. In conversation he would just give up. That was until he decided to master his cell phone again.  Back in November we had all upgraded our cell phones, and Richard was the only one to get a phone capable of taking verbal commands. There he was in his recliner today intensely focused on trying to answer the cheeky, British-accented lady’s voice demanding, “Say a command.” His face was one of intense concentration as if he were going to grab the golden ring when she spoke again. “Do you know how funny that looks,” I asked, “seeing you with expressive aphasia let that saucy woman hold you captive?”  He laughed at the spectacle he was making and went back to the phone with a command – “Check … messages.” The saucy voice reeled off an answer. He looked up with a triumphant grin. He had the gold ring.   

Progress Measured; Progress Driven

In the first four weeks after surgery Richard would commonly clamp his eyes shut and say, “Too much!  Too much!”  On gentler days he would dismiss anxieties with a shrug sighing, “Got me.”  Now we are hearing those words less.  Richard is slower in replying, and we can see on his face that he is working his mind to formulate an answer.  While he is having fewer episodes of distress, I am able to see in his eyes when stress is mounting.  I was trying to share with the children the marks to read in their father’s face to gauge his mounting stress using a 1-5 scale.

Level 1 – relaxed, smile-ready eyes

Level 2 – smile-absent eyes

Level 3 – two vertical lines appear between his eyebrows

Level 4 – vertical lines plus eyebrows resting on top of eyeglasses

Level 5 – eyes clamped shut

Richard heard the list and approved.  That alone was a sparkle of progress. 

Oh, yes, speaking of progress. Back in January we, as a family, decided Richard with the brain cyst was an accident risk in driving the car.  He appreciated being chauffeured.  Post-operatively, it was obvious that he should not be driving if the decisions of mere conversation stressed him. Well, today he drove home from church, all 45 miles.  He performed very well.  The route was perfect for a first trip since we take a county highway that is not heavily traveled on Sunday mornings.  He was focused and deliberate in the spontaneous decisions necessary for safe driving. Nothing seemed to bother him – not even the turn signal.  With two left turns and three right turns to get home, he only signaled once and that was when he was turning into our driveway.  After entering the house I complimented him on being so energy conservative that he didn’t waste any energy on the turn signal.  He put his head back and laughed heartily. With or without the blinker, today’s journey signaled success and progress. 

Perseverance

Sunday we crested the one month mark past surgery.  Amidst the celebration I realized I had not blogged explicitly about his final diagnosis.  Richard entered surgery with a tentative diagnosis of a colloid cyst in the 3^rd ventricle of the brain. After surgery the diagnosis had changed to read “intraventicular vascular malformation.”  Rather than finding a colloid cyst which would resemble a gooseberry they met with a “mulberry type appearing lesion” with evidence of past bleeding.  My personal speculation is that Richard may have experience that bleeding on December 28 when we first went to the emergency room and discovered the little lesion on his CT scan. 

Regarding his rehabilitation, to measure Richard’s improvement I need look no further than his e-mail sent box.  He has only sent three e-mails.  On February 7 he sent a four word note with a major misspelling. On February 23 he sent an 80+ word message with clear grammar and perfect spelling. 

Remaining challenge?  Fatigue and thinking are top of the list right next to getting Richard to see that he is making progress.  He sees taking several minutes to write that 80+ e-mail as insufficient improvement to call progress.  He gets fatigued just thinking, so he easily gets upset with simple tasks.  Making choices wears him out.  “Honey, do you want a burrito or a frittata for supper?”  That’s enough to bring on the desire for a nap.  We keep trying. We keep praying. We keep working.  That adds up to perseverance as only the Lord can grant.