Sunday Dinner

With a name like Cook, it only seems natural to measure progress by the Sunday Dinner. 

Recalling his January 27 surgery date, his first Sunday, January 30, was hospital-based where he moved from the intensive care unit to a standard surgical floor. The hospital had an interesting food service in that the patient needed to telephone an order for each meal just as one would order room service in a hotel.  Richard struggled on his own ordering that first meal - pork roast, mashed potatoes and cheese cake with lemonade. It was an odd selection for him lacking vegetables, but it was what he could read and speak.

On his second Sunday he was home and willing to eat at the dining room table with us.

He assembled his own beef fajita as the ingredients were passed around the table.

On his third Sunday he helped with preparation.  Richard cleaned the beef into chunks and I mixed the ingredients for the oven casserole.  Richard then peeled the potatoes I set out.  I finished preparing the meal from there.

Today on his fourth Sunday, Richard and I discussed menu options and decided to prepare the following:

Chicken Parmigiana (a simple oven-baked chicken with Italian toppings)

Pasta tossed with a basil-tomato-onion sauce

Green beans with onions and

Lettuce greens

I thawed the boneless chicken breasts, cut them into manageable pieces and gave Richard the recipe to prepare them. He did it. He prepared the entire meal with minimal help.  Part of the minimal help was in determining sequencing.  He started to cook the pasta sauce before he started the chicken, risking scorched sauce. Otherwise, his performance was delicious.     

Yesterday Richard was willing to help out by baking the week’s supply of bread.  Saturday afternoon I handed him the simple white bread recipe.  I learned that Richard is very concrete at this stage of recovery.  When Peter makes the recipe he achieves 3 or 4 loaves using narrow bottom pans. The recipe said 2 loaves and Richard was determined to obey the recipe. He found some over-sized pans to keep it that way.  The recipe said “yields 2” so two it was.  Scrumptious and wide-bottomed – I guess I should rejoice that he likes wide-bottoms.  

Regeneration Moments

Thursday night at 10:47 p.m. I was awakened from a sound sleep by Richard’s tossing and turning.

“You okay, honey?” I asked.

“No, I’m awake and my mind is running.  I can’t get my thoughts in order and …”

“Go on,” I invited, drowsily.

“I can’t!” he exclaimed and struck the mattress with his palm.

Oh, duh! I couldn’t believe I could be so dumb. Now I was fully awake and a partner to his racing mind.  I needed to help him defuse his running mind and maybe help him open his gates of verbal expression. 

I began by asking some simple questions about his physical comfort.  “Do you want a pain pill?” “Are you a comfortable temperature?” Those were fine.

Then I moved to his emotional comfort. “Would you like a back rub?” “No,” he replied but I could hear the edge softening in his voice.

I moved on to his spiritual comfort. “May I pray?” I asked.  “I guess,” he rasped amid his rapid breathing.  I began to pray. It was an easy prayer to begin as I reflected on the beautiful warm day it had been, filled with sunshine and hope.  I spoke on, pouring out my heart and I could sense Richard relaxing. His breathing slowed down and his arm muscles relaxed. The bottom line of our prayer time was seeking courage, patience and peace.  We slept.

Now two days later, I retold the story to Richard and he had a good laugh over it. He is steadily improving, especially evident by being able to initiate laughter at his own challenge.  Friday, he worked on various brain games to recapture reading.  Late in the afternoon I had to collect the car from the garage after some routine maintenance.  Richard came along for the ride.  We took a meandering ride home covering some of his old school bus route from his childhood – 45 years ago. He told tales of who was related to whom all along the road.  I could see a satisfaction in his eyes as if he were caressing each memory as it surfaced.  We have vowed that on the next sunny sweet day we will drive the rest of the route to complete the catalogue of 45-year-old memories. 

I look back and think of those as turning point moments of regeneration.  Not only are those moments regenerating Richard’s brain circuits, but they are also proving healthy for our marriage.  In a sense we are growing up together.  More down these paths later…

Ten Easy Steps

I can do it in 10 easy steps. I have learned to go from being a homeschooling mom to being a rehab nurse in 10 easy steps.  How do I do it?  Right foot, left foot, right foot, left foot, etc. It takes ten steps to go between our kitchen table, the base of our homeschool work, to our living room couch, the seat of our rehab efforts. 

All jesting aside, Richard’s time with the speech therapist yesterday was fruitful.  She was impressed with his improvement since she had last seen him on the Tuesday before.  She asked if we had photo albums from our past.  She wanted to give Richard an opportunity to tell the tales behind the pictures.  In a flash we had the photo album chronicling the restoration of the old Missouri farm house we moved into in 1993.  Richard enjoyed telling the tale.  Tomorrow she will be back, and he is armed with the photo collection of the construction of our office-guest house in Thamaga, Botswana.  African construction techniques will fuel lots of talk time since the African way was different from the American way of construction.

The other event on Monday that seemed to have an impact on Richard’s rehab was a visit to the Missouri Veterans Home (MVH) in St. James, his place of employment.  He called it bitter-sweet.  The sweet was in the warm greetings and encouraging words of the staff, his co-workers.  The bitter was in the stark reality of the time pressure of leave-time, the economic risk of disability, and the brain demand of the environment.  “It reminded me of how far I had to go,” he said, “and of how far I’ve come.”  The cherry on the top of that visit arrived today in the mail – greeting cards signed by what looked like every employee at the St. James MVH.  I tell you he is pumped to keep working. 

Rehab Lesson Planning

Back in Botswana in 1998 when Richard had Hepatitis A, he needed to take a couple months of rest to recover. To keep him down in bed, I brought home skeins of yarn.  He started knitting and did not stop until he had produced 2 sweaters, several pairs of socks and a hat or two.  Intense knitting was just the thing to assure compliance to bed rest recovery.

With that in mind Richard was thinking ahead to have a knitting project at hand for his post-operative recovery this time.  Socks worked last time, so why not again?  Before his surgery he had started about 3 inches into the cuff for one sock in a pair of nice wool socks for me.  When he returned home from the hospital, he picked up the sock and blankly stared at it. After a day or two he was able to remember enough to get another inch or two on the ribbed cuff before he came to the heel.  Turning the corner of the heel requires knitting row by row while reading the pattern. He just could not make his brain circuits operate to coordinate the reading and the knitting.

I offered him my simpler project underway - knitting a scarf on a circular needle.  In two weeks I’d only completed about 8 inches toward the 48-inch scarf and was frankly feeling overwhelmed by the single knit stitch effort.  I really am not a knitter.  Well, today (Sunday) he finished the scarf! A mere 7 days after taking it up. The sock heel is still beyond him, but bit by bit he will get there. 

On another manual craft, he is starting to perform some simple sewing projects on the machine.  Hemming vintage plain white feedsacks was his first production.  Slowly he was able to perform all the little stages of sewing – threading the machine and needle, loading the bobbin and folding the edges of the feedsack.  I have great hopes that manual performance is the gateway to verbalization.  So far he can do and show but is limited on verbally explaining his performance.  The next goal?  It is time for the therapist tomorrow to help us sort out the plan.

From Flashback to Forward

Flashback to the Super Bowl commercials viewing – our family favorite was the Volkswagen commercial with the little Darth Vadar. Why?  The dad was the hero who empowered his little boy to succeed.  Now that is family values at their best.  

Now more about dad the hero and the most recent news…

Friday was Richard’s first outing since his ride home from the hospital. We headed to St. Louis for his post-op visit with the neurosurgeon.  On the way I needed to stop past JoAnn Fabrics to pick up some supplies for Laura.  Richard had the option of waiting in the car while I dashed in, but, no, he wanted to come along in.  I was delighted strolling into the store on his arm.  Being in the fabric store was splendid therapy for him.  He was wide-eyed and radiant with wonder at all the possibilities, but he kept his hands to himself, a difference from his normal stroking the fabrics.

We arrived at the hospital an hour early to have an intimate lunch at the Bistro Coffee Shop, an unbelievable hospital-based eatery. It was my turn to be radiant as I flashed back to the reality that a mere two weeks ago I’d been eating at the Bistro while Richard lay in the Intensive Care Unit. Here we were celebrating the recovery and restoration side of life.     

At the neurosurgeon’s appointment, the nurse removed the staples from Richard’s incision; he no longer looks like he has a zipper across the top of his head. The repeat CT scan of his head yielded a favorable picture of satisfactory healing without complications.  We were all pleased with the report.  Dr. Matz assured us to continue in our patience.  Gradually stimulating Richard to think and perform will yield the greatest dividend, but Doctor also projected that it will be at least 6 months before Richard will be ready to return to work.  Monday, I will be visiting with the personnel clerk at his work to sort out the paper work to go forward. 

Coffee-christened Therapy

The speech therapist arrived before noon on Monday.  With her came a structure for whittling away at Richard’s aphasia.  He now has worksheets to challenge him to write, to organize his thoughts and to re-stimulate expressing them.

Since Richard’s return home on last Wednesday, I can see some progress.  Richard gets frustrated that his performance is coming back slowly, at least by his appraisal, but let me relate an example of progress over this past week.

Coffee has been a passion for Richard as long as I have known him. We have developed our own multi-step process to brew the perfect cup.  As part of his homework for the speech therapist he wrote out the steps for making a cup of coffee (I’ll add parenthesis for clarity) as follows:

1. Open the can (of coffee grounds)
2. Turn on the water (to boil in the hot pot)
3. Place the scoops of coffee into the receptacle (a 2-cup Pyrex carafe)
4. Pour the water on (the grounds)
5. Place filter on cup (in a Melita cone)
6. Pour coffee into the filter
7. Remove filter from the cup
8. Enjoy the coffee
9. Clean up

This is really the final paper so to speak on a week of effort.  Let me recap the week’s events, day-by-day.

Thursday – Richard accepted a cup of coffee that I brought him before breakfast.

Friday – Richard asked for his cup of coffee before I had a chance to offer.

Saturday – Richard was in the kitchen before me.  He found his cup and set the water to boil in the hot pot.  Then he looked at the cabinet and threw up his hands in exasperation. He stepped back and watched me complete it.

Sunday – He was in the kitchen before me again.  He got all the equipment onto the counter for making coffee – filter, Melita cone, cup, Pyrex carafe, coffee can, boiling water. He started by putting the grounds in the Pyrex carafe. He stood puzzling for a bit before he became frustrated and told me to finish it.

Monday – He started just like Sunday but stuck with it to the step of pouring the coffee through the filter.  He stood and gazed at the brewing grounds and the dry filter. Finally with a little verbal encouragement he poured the coffee into the filter.  Ah, the look of triumph as he sipped that cup of coffee, that was until he scowled and said the coffee was bitter.  We negotiated and decided I should get a different roast when I shopped. 

Tuesday – I had purchased a different roast, but I had not told Richard where it was in the kitchen.  He got to the kitchen before me, and by the time I arrived he was pouring the hot water on the grounds.  I looked on the counter and was jubilant that he had found the new coffee. Slowly and steadily, he was completing each step without prompting.  We stood there listening to the drip, drip, drip of the coffee.  He removed the filter cone and took a satisfying sip.  Then an odd look came across his face as he said, “It’s still bitter.” After a pause he went on, “Tea.” 

After all these years I never expected him to consider tea as a coffee alternative.  I speculated that his medications may have something to do with his current tastes.  He agreed to give it some time before he jettison coffee from his lifestyle.  Meanwhile, I point out his success in coffee preparation as evidence of his potential for further recovery. 

One small cup of coffee, one giant leap of progress.  

Super Rehab Bowl Coming

Here it is Saturday morning, and I totally missed posting anything yesterday.  I have never performed rehab nursing and now I know why – it is VERY time consuming, patience intensive.  I have a new admiration for my sisters serving rehab needs.

First off, Friday morning before 9 a.m. we received a call from the final faceless voice from the insurance shuffle the day before.  Her name was Sharon, and she had indeed achieved clearance for us to use the local speech therapist at in-service rates.  Also in the process we were assigned a case manager, so now I have a name of a specific person to speak to about any issues – Shiela.  I’m not sure if that is good or bad, but she is human and friendly.

Richard is wandering around the house.  He can clearly state, “I have expressive aphasia.” Then the conversation comes to a halt or melts into a monologue by the other person.  The speech therapist is schedules to visit on Monday morning, that is, if she can get out of her rural road. We had about 3 more inches of snow last night and more in the forecast.  At least it is pretty landscape to view from the windows.

Tomorrow is Super Bowl Sunday which has never been much of an event for us. Since Reuben has television and we do not, in the past we have gone to Reuben’s house to watch the commercials and then play cards during the actual football play.  We have a family passion for commercials; John even collects them on his computer.  John announced that the website Hulu will be showing the commercials only.  We are baited to see if that is true and then we will sign on to project them on our big screen. But given the snow and post-op recovery, we are staying home and cozy.  Play cards? We’ll see. 

From Insurance Labyrinths to Benediction

Richard was up early this morning as is his usual at home.  He savored his coffee while he sat in his recliner wrestling with finding thoughts to organize.  He is such a high-output person that the slow-down on expressing himself is an agony for him.  His activities of daily living, like hygiene and eating, kept him occupied enough of the day.  Drop in a catnap and his day was complete.

My day was another matter.  I started my day by contacting the home health care agency of our local hospital to initiate home-based speech therapy for Richard. They agreed but said the therapist was snowed in at home because of an impassable icy road.  They apologized but assured us she could be here by Monday.  All looked fine.  Until...about 3 hours later the financial person for the home health care office called to break it to me that they were out-of-network with our insurance, thus the insurance would not pay for them.  She had already examined the in-network options our insurance offered and could find none to refer us to. She helped me understand just how to address the insurance spokesman. I was off on the quest.

I telephoned the insurance to face the dragon.  After getting through a labyrinth of computer decoy commands, I reached a real speaking person.  She explained to me that the local service could be approved if  all other options within 50 miles were unable to serve us.  There was only one alternate option within 50 miles - Sullivan, Missouri.

"Fine," I said, "I'll call them."  I dialed.

"No," they said, "we don't even have a speech therapist on our staff."

Back to the insurance company with a hope of getting the local provider approved.  Transversing through the labyrinth of computer barriers again, I arrived at the mercy of a new face-less voice who informed me that the last person was incorrect that the service should be within a mere 50 miles.  On January 1 the rules had changed that the service was to be within 100 miles.   The face-less voice then led me through the insurance company's website to a list of 49 providers within the 100 mile range.  She told me I needed to contact each one to confirm their availability before I could petition to use the local provider.

Two hours and 49 phone calls later, I'd enjoyed a chase through valid home health care services who did not serve the Rolla area in addition to numbers for nursing homes without physical therapy departments, dead phone numbers and housecleaning services for invalids. I called the insurance company back.  It was minutes before their 4 p.m. closing time.  The person I got this time wanted to start me over with the list of providers in that 100-mile range.

"No," I said, "I have already called each and every one. There is no service available in that list."  The line grew silent. I waited.  Finally, she spoke and said she was reading my file for the day.  The other face-less voices had recorded the proceedings. She said it was closing time so she would take the case to the supervisor tomorrow.

"What time can expect to I hear back about this in the morning?" I asked, "Nine o'clock?"

"No, I don't get in until 8 a.m. and I will need to call the supervisor," she replied.

"That gives you an hour," I pointed out.  She was not amused.

"That is too early.  We will get back with you as soon as possible," she said closing the conversation.

So we are at the mercy of the insurance company.  Even if I call in the morning, that last face-less voice must have been keenly aware that I most likely would not arrive at her phone since in today's three calls I'd reached a different voice each time. So I realize that the Lord is working His will in all this.  I am sensing His will is that I develop graciousness and patience while being assertive and caring.  

Meanwhile, Richard took a step toward his own rehab plan.  After breakfast, we had an abbreviated family devotion with a song from the hymnal followed by Luther's morning prayer.  Richard chose the hymn "Hail, O Source of Every Blessing" from the Epiphany section and then he took off leading us in the song using the family favorite tune "Ebenezer".  He was not expressively challenged as we sailed through all three verses with gusto.  Then we melded our voices in Luther's morning prayer. At the close of the prayer Richard traditionally has a blessing, but he could not recall it.  His singing triumph was marred for him.

After supper he suggested we have devotions again.  A different hymn and Luther's evening prayer blended our hearts before the Lord.  Then the time came for Richard's benediction - HE DID IT!

Home Safe and Sound

It was 5:30 p.m. when we pulled into the driveway with Richard snuggly sitting in the backseat of the mini-van. John and I made wonderful time getting to the hospital arriving at 2:15 p.m. The roads were mostly clear with some counties having been more meticulous than others.

The staff at St. Luke's was great about getting things in order and we were on the road by 3:15 p.m. John drove the return trip to Rolla, so that I could sit in back with Richard.  It was grand being chauffeured. Upon arrival Richard dispensed hugs to everyone available, before he assumed his seat of honor in the living room.  He reached over and picked up a cookbook Laura had been studying to plan tomorrow's menu.  He slowly browsed through the picture-ladened pages and then he looked up with a silly smile on his face.

"This is going to be fun," he said with a tone of anticipation.

"What is going to be fun, honey?" I queried.

"This," he stressed while holding up the cookbook as he wrinkled his brow searching for words.

The lightbulb went on for me. "Oh, because it is all new to you?  All the recipes look new?"

He resumed the silly smile and nodded with gentle enthusiasm.

I think Richard is going to bring new meaning to my coffee cup quote by Marcel Proust -

"The real voyage in discovery consists not in seeking new landscapes but in having new eyes"

It is wonderful having him home. Hey, maybe the doctor didn't remove anything, but rather installed "new eyes" for discovering a new look on life. I can't wait to see the new things we will all get to discover.

News Flash!!!

Dad is coming home!!!
Mom got a phone call from Dr. Matz about a half hour ago and he said that there was the possibility of dad being discharged today. She got the call 15 minutes later that it was a certainty. So she and John grabbed together the things they would need, jumped in the car and are now heading towards St. Louis. Thus leaving behind one very excited daughter who couldn't help but share her excitement with you.
Signed Laura

Grounded by the Snow

Yesterday, Richard insisted that John and I return to Rolla, especially in anticipation of the big winter storm pending.  The storm hit. I was awakened by the plink on the bedroom windows at 4 a.m.and by 5 a.m.it was a hardy chatter of freezing rain. I heard a couple lone cars moving along our road as normal in that 4-5 a.m. hour.  I started calculating how I could slip out to get to St. Louis. Since the majority of folks would be canceled out of work and school, the roads would be deserted. I resolved to wait until daylight (about 7:30 am) and then to sneak out.

At 6:44 a.m. Richard called.  His first words - "Stay home."  I melted into tears.  He repeated his command.  I could tell he had practiced to be able to sound decisive and clear.  Why did he have to have speech back right now?!??!  I was silent in my tears.  I could not speak lest I give myself away as the fountain of tears I'd turned into.

"Are you still there?" he queried with effort on each word.

"Yes," I finally ventured, "I'm here. But there are cars on the road."

I knew I wasn't convincing him.  He was unswerving.  I relented.

Since I didn't leave a charger for Richard's cell phone we must be frugal with our talk time.  Richard's aphasia limits him to talk only - no texting since the keypad and the struggle of spelling overwhelms him. We have talked for about 10 minutes every 2 1/2 hours so far today.

He said the social worker visited to help set up home-bound speech therapy but he still has no time table for his discharge.

One other thing I have not told you, my dear readers, is what the doctor reported was actually removed during the surgery.  The initial diagnosis was a colloid cyst which would be a smooth gelatinous sack looking a bit like a gooseberry. That is not what the doctor found when he reached it. Rather he described it as a mulberry in size, character and color.  Dr. Matz said the brain tissue around it was rust-colored making it suspicious that a small bleed had occurred at some time in the past. We are in baited anticipation with Dr. Matz to learn what the pathologist report will say hopefully later this week.

Meanwhile, we watch the snow and wait.