Therapy Team 1

I love learning. The process of learning what therapy was for stroke survivors was fascinating for me.  As a teacher and would-be perennial student, learning about the benefits and machinations of occupational, physical, and speech therapy was exciting. I knew it was critical for me to observe John’s process and progress from the standpoint of being an advocate for his care. However, once I was able to be at his appointments as much as possible, I got hooked on the process itself. It was as if I was back in college, taking a new class, cracking open a fresh smelling new textbook and diving into a new opportunity to learn something completely different.

Looking back at my reaction to learning about therapy, I realize how grateful I am now that I found Therapy 101 so exciting. My excitement put me on a gratitude ship that allowed me to sail right through the tragedy of why John and I were really in all of these therapy classes. I was able to focus on the goals of his improvement without looking back at the past at all. I locked my panic about John’s condition in a footlocker and tucked it away in a musty closet in the hold of the ship. As long as I didn’t dwell on the panic and fear inside me, I could enjoy my new titles: Chief Advocate and Captain Support.

I felt empowered.  I could throw him the lifeline that would help him improve. As long as he grabbed the other end of that lifeline, together, John and I could do this! Our team attitude that was well developed from our music performing careers together kicked in.  We could get him back to his former self. If we practiced daily and kept on the same page of the score, he would be walking and talking in no time. All he had to do was pick up the other end of the lifeline I threw to him.

At least this was my plan, this was the theory. I learned many lessons along the way about that plan. 

 2014 Nancy Weckwerth

Teammates to the Fore 3

The third and largest project that John and I wrote completely as a team was a full length ballet entitled “Leharjinn”. This was written sometime between 1983-1986 while we were living in Toronto, Ontario.

Somehow we learned of a ballet composition competition that was occurring in Geneva, Switzerland. The prize, with details now long forgotten, was a performance by some ballet company and orchestra in Europe, and a financial prize. John and I decided to dig in and submit an entry to the competition. One of the requirements was that it would be for full orchestra.

The first step was to create a story for the ballet. I dashed that off in a couple of days. Then we planned out the many individual movements that would be performed by the dancers in order to tell the story. In this situation, we felt we were each more suited to specific movements so we chose who would write each movement. The orchestration was communal however.

To describe the basic compositional process, we initially wrote the ideas for piano. At this point the work is basically a sketch for piano with the melodies, countermelodies, and harmonies outlined.  The second step is to decide which instruments are to play which notes of that piano rendition. That process is called “orchestration”. An Orchestrator makes those decisions. The Orchestrator can be likened to a painter that adds the color to a black and white sketch. The Orchestrator takes a large piece of paper that has enough staves on it for each instrument that will be performing. This is called a “score”. Then the notes are carefully placed on the individual staffs. One staff for the first violins, one staff for the second violins, then violas, cellos, and bass. This continues for each and every instrument that will have something to play. When it is completed, the score is used by the Conductor to conduct the composition.

John and I put score paper on the dining room table. For several months we ate somewhere else as that table was the creative venue for our magnum opus. Whomever strolled through that room worked on the orchestration of the entire ballet.

Months later, and a trip from Toronto, Ontario to Buffalo, New York to have it photocopied, we mailed off our entry to Switzerland.

We eventually heard that our piece was one of the top three selected for the prize: but no prize was awarded. This was both a boost to our ego and a slap in our face.

Years later we learned one of the lessons of composition competitions. Apparently it is no secret that a specific type of work is being commissioned. A competition is announced. If none of the works meets the criteria that is unofficially but realistically desired, then no award is given. The contest promoters keep their prize money and try again next year.

At one point in my career of creating performances of works on synthesizer, I actually recorded the entire ballet. Its only performance exists on a now deteriorating set of two cassette tapes. The full orchestral score is lovingly protected, carefully boxed, on a shelf in our garage. It is a skeleton living there: a relic of our past lives as professional musicians and composers together.

All lessons learned aside, John and I enjoyed every moment of writing that beautiful piece. It was yet another series of teamwork projects that solidified our capacity to work together. The real value of “Leharjinn” is that I now know that this was an important piece the Universe gave to us to prepare us for our greatest teamwork project of all, that of surviving a stroke and thriving together in love and joy.

 2014 Nancy Weckwerth

Teammates to the Fore 2

Teamwork project number two occurred during our three years of travelling with the Mantovani Orchestra throughout the United States from 1983-1985. A singer had arrived to perform with the orchestra and the music he brought with him for the orchestra was actually for a big band. It was the wrong instrumentation for the Mantovani Orchestra [1] which is mostly strings with a few brass, woodwinds, and one percussionist. Overnight and working in a hotel room, John rewrote the entire piece for the correct instruments while I copied the musical parts for the players. The next morning at the rehearsal, the orchestra members played straight through the work: there was not one error.

By nightfall, it was performed on stage.

John and I were continuing to develop the ability to work together accurately, quickly, and with a highly advanced set of musical skills. We did this without even thinking about how lucky we were to be able to enjoy our abilities together. What was necessary, we accomplished. 

How well these skills would serve us, in the completely different world of physical, occupational, and speech therapy in the future. Life hands us amazing opportunities to learn and grow. Awareness of our lessons often comes years later. We now live in gratitude for the lessons we learned.

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[1] http://www.themantovaniorchestra.com/

 2014 Nancy Weckwerth

Confessions of a Caregiver: Teammates to the Fore 1

John and I were an amazing team prior to the stroke. As professional musicians we performed together, wrote music together and commuted to gigs together as needed. This professional teamwork added a level of splendiferous joy to our marriage.  Not only were we professional teammates, we considered ourselves soul mates on the personal level. All the stars had lined up for us when we found each other and fell in love.

In our burgeoning business as composers, John and I often collaborated on works that we needed for upcoming recording sessions or other performances. We would put the score on the piano and leave it open. Whomever walked by added the next needed parts of the arrangement as time permitted.

I recall three specific projects where this technique was used. The first was while we were living in the Miami, Florida area. We had been hired to do the arrangements for that ancient technology: the vinyl record album. It was being recorded by a spiritual singer. I believe this would have been in 1982, definitely the pre-compact disc era. The young lady had hired another arranger to do the eleven songs on the album but for some reason which I can no longer recall, he had had to back out of the assignment. We got a panic call and had one week to do the arrangements for strings, brass, a couple of woodwinds, piano, and percussion. This was the first time we ever collaborated on the same works. We had no choice: this was a lot of music to arrange and prepare for the recording session in seven days.

We threw ourselves into the task and there was staff paper, pencils, and erasers spread all over the piano. Our living room looked like the aftermath of a ticker tape parade with larger pieces of paper as these items spilled onto the surrounding floor and copying tables. Whomever was home at the time commandeered the piano and pencils. Whomever walked by later, assessed the progress and continued.

In one week, we both performed on the recording session. Two copies of the vinyl album entitled “Songs of Joy and Praise” sung by Mary Anne Kigar stand proudly, but nearly forgotten on the bookshelves in our home with other vinyl skeletons.

 2014 Nancy Weckwerth

6 – Routine and Music Lessons

I settled into the routine of three daily visits to the SNF on top of my full time job at the retail store. Since my wages were still ridiculously low, I was actively recruiting new private music students for my home teaching studio. This paid considerably better. I also approached the Director at the music conservatory where I taught and requested more work. He and I came up with a piano ensemble class that I would design. It was great. I was delighted to be creating something positive for a group of kids that wanted to learn to become better musicians.

There are ways to find joy in any situation. Sometimes they land in your lap, and other times you get to make them happen. Notice that I say “get” to make them happen, not “have” to make them happen. The difference between three letters and four here is much larger than one letter. It is a choice of attitude that I was beginning to learn as a result of all of the stress I was under. I wasn’t fully aware that I was learning that lesson of choice yet. I was just doing it without awareness at this point.

Looking back on this time now, I realize that I made the three letter choice as a means of stress relief. I added more students to my teaching regimen to add to our financial asset creation process, but in doing so, I relieved personal stress on two layers. One layer was that of the joy of teaching. It helped me forget about my other issues for ten to twelve hours a week. I was soon teaching 22 students each week in addition to my full time job. The second layer was that the additional earnings were easing my financial burden. Little bit by little bit, I was slowly solving the financial issues and making it all fit together like a well cut jigsaw puzzle.

The seeds of anger and resentment were growing. I was not aware of that yet, either. This whole time period from about six to eight weeks after the stroke to about the two year period after the stroke was about surviving, solving problems and supporting John. I was drifting through each day like a leaf being tossed in a wavy sea. I felt like the moment the waves dissipated a bit so that I could breathe, something else would blow in and roil the surface waves again. I would be flung against more rocks. The bruises I received from bouncing off those rocks were slowly hardening into scar tissue. The thicker the scar tissue, the less I would be bruised. Stressors were starting to bounce off me and I was turning down a new street named “Fearless Way”.

I was becoming fearless because I was conquering each issue as it arrived. I developed a stronger skill set. The more issues I conquered, the more things I scheduled and made work, and the easier it was to add the next layer of skills and duties. I was beginning to believe in myself, totally. I did not know that I believed yet, however. The realization of my belief in myself was a gradual awareness that happened over time.

I added more layers to my role as Caregiver. Pah, I didn’t even know the name for my role yet. Caregiver…what was that?

How rewarding it is for me, now, to look back and realize that I made the choice not to play victim or whine about the new direction life had landed upon me. At the time, I was too busy solving the problems to be aware at all that I was learning incredible spiritual lessons and growing as a person.

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned, and Solutions for Caregivers will be published in late 2014. 

You can view John's facebook page for the complete chronological story of his life and stroke at:

https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.

 Nancy Weckwerth

5 – Early Rehab and The Phone Calls

After a week or ten blurry days of a regular hospital stay with minimal rehabilitation, John’s insurance moved him to the Rehabilitation Unit of the second hospital. Since this Unit had a reputation as being one of the finer rehab units in Southern California, I was delighted with this phase. I felt that now he would begin making some real progress.

On a daily basis, John received speech, occupational, and physical therapy. It became a ritual that I would receive The Phone Calls at work from the therapists. “Nancy, Line 1” became my new nightmare as it bellowed over the store intercom system. Especially memorable were the reports from the speech therapist. Her “John will never speak more than 150 words” still echos in my devilish dreams. When I heard that, I did nearly crawl behind the counter in the store and hide again. This was not my definition of the “normal” to which John would return. I decided that John and I would prove this therapist wrong, somehow. The seesaw ride for me from “pronouncement to determination” to “new pronouncement to further resolve” was now making me dizzy within the Cloud-Fog.

The Phone Calls continued. They came almost daily, and often more than once in a day. The telephone cord felt like a hangman's noose to me.

After two weeks in the Rehab Unit, the next life shattering announcement from the White Coats was that “There is a cheaper way to do this”. Something inside me snatched those words and etched them on my forehead, even though I had no idea what they meant at the time. It became clear a few days later when The Phone Call came that John was being moved in an hour, to a Skilled Nursing Facility, abbreviated, SNF. 

AN HOUR? 

They had to be kidding. I was told to get there to register him. I felt as if I was swimming upstream in icy unknown waters again. The “whys” returned. My thoughts were: “Why is he being moved?” “Why, again?” “Why are they taking him away from this wonderful hospital to something obviously of lesser quality?” “Why are they placing “normal” further from his and my reach?” 

I was so alone. I could barely breathe with the rope squeezing my chest.

We all know that hindsight is 20-20. I now know that this was only the beginning of many ridiculously short notices for massive changes in the “un-care” system of which John was hopelessly entangled.

In my effort to remain as cheerful and supportive as possible in front of John, I arrived at the SNF with a smile on my face and went to the reception desk. After an introduction there, the young gal at the desk took out her clipboard and began questioning me. When I quickly answered her third query and gave his social security number, she asked “How do you know that so quickly?” I was shocked by her comment. Why would I not know my husband’s social security number, especially since I had had to repeat it about four thousand five hundred and seventy six times since the curtain fell? 

The next question she asked was “What funeral home will you be using?” The abject cruelty of that question rankles me to this day. I thought torture chambers were illegal in America. Fortunately, I was leaning with my elbows on the counter. My knees went weak and had I not been leaning on the counter, I would have fallen to the floor. In what Universe is that the next question after name, address, and social security number? Why would anyone so easily stab a family member that quickly, without knowing why the patient was arriving there? Are there no standards or training for these workers that teach them compassion or simply humane-ness? What planet did this girl live on? 

"Does this emotional roller-coaster that I am on ever slow down? Can I get off this ride?" These were my rampant thoughts. The ever present Cloud-Fog was exceptionally dark on this day.

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned, and Solutions for Caregivers will be published in late 2014. 

You can view John's facebook page for the complete chronological story of his life and stroke at:

https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.

2014 Nancy Weckwerth 

Confessions of a Caregiver 4: The Second Hospital

John remained in the first hospital until he was fully stable. Then I was told he would be moved to a hospital closer to our home that was on our insurance plan. On the appointed day, I waited at the second hospital for him to arrive. I waited several hours, or at least what seemed like several hours to me. Time had become a non-entity for me. I was always either waiting or moving to the next situation to wait. The Cloud-Fog was never gone. It just flitted out now and then to give me a moment of respite, only to return when I was not looking.

It was either the fifth or sixth day after the stroke when he was moved to the second hospital. I only remember seeing him come down the hall on a gurney and saying “This one belongs to me!” to the driver.

The days were now a blurry haze within The Cloud-Fog. I had gone back to work after three days off. I needed the money from my barely above minimum wage part-time job in retail sales. Gratefully, I was the manager of the department in which I worked. The first thing I did on the job was to give myself a full 35 hour work week to increase my income. They needed me there more, anyway, so it was a win-win. I had flipped into “solution” mode to solve our financial concerns. Well, my concerns. I now realized that John was no longer a part of the financial team as an asset earner in our household. He was now completely a financial liability. The full realization of this fact was an explosion of dirty-bomb capacity on my time and awareness.

All the “whys” of the previous days since the curtain dropped had now turned into “hows”. My thoughts revolved around “How was I going to provide the income? How was I going to find the time to hold down a full time job? How was I going to support him emotionally, physically, psychologically? How was I going to get him back to normal?” I actually believed normal was still possible at this point.

At the second hospital, as he had at the first, John refused to eat hospital food. I bravely added another layer of duty to my roster. I cooked his food each evening, and brought it into the hospital for him each morning when I visited at 7 a.m. The kinder Scrubs at this hospital were happy to refrigerate it and heat it for him at noon. In the evening after work, I went back to the hospital to visit and bring another meal for him.

It never even occurred to me at this point that I was heading down a path of no return. That path was one of permanent Caregiver to a handicapped person. Each new self-assigned task was assumed without even a twinge of anger or resentment. There was no time to be angry or resentful. It just “had to be done”, so I did it. I added layer upon layer to my schedule. I was in shock. It was months before the shock began to dissipate and I allowed the anger and resentment to drop in for a long visit.

Confessions of a Caregiver 3: The Second Morning

It was Valentine’s Day: the morning of February 14, 1991. I had rustled through John’s dresser at home looking for clothing for him and discovered a brand new woman's blue sweater in one drawer. I realized that it was his Valentine’s present for me. I decided to wear it. After having spent the rest of the previous day making arrangements with a friend to drive me to our car I then drove to the hospital. The ever-present Fear Cloud was still with me. It had now settled into a large knot in my stomach. Breathing was challenging because my chest was so tight. At least I was warm in my new sweater.

When I arrived in his room, an awake John could not greet me because his speech was completely gone. He saw the blue sweater and reached for me with his now only working arm, his left. He grabbed my arm and tugged on the sweater with the hint of a smile. Facial muscles were not working right either. That hint though, told me that he was still there, inside the silent cocoon of brain damage. I sputtered some words of comfort and he turned away from me towards the wall, refusing to be a part of life. A moment of pure divine inspiration came to me and I said “John, this did not just happen to you, it happened to us. We have two choices here, we can do this well, or we can do this poorly. You and I will choose to do it well.” In that moment, John made a choice. He turned back to me and with his eyes, he told me “Yes”. We had made a pact. We became a different team. We had always been a team as musicians, now we became a team called “rehabilitation from stroke”. 

It is impossible to describe the POWER we both felt, together, at that moment. The clutches of The Cloud were starting to dissipate.

Later that day John was moved to yet another room. This one was private. A White Coat finally arrived to talk to me.  It was my first conversation with him. I asked him what a stroke was, because I really did not know. I was so naïve. He explained what it was and told me that John would not be able to work for at least two years, and probably never again. Anything else he said to me went unheard after that announcement. When he left the room, I literally crawled on the floor and hid under John’s bed and sobbed. John slept through all of this with the head end of the hospital bed raised. I don’t know how long I sat on the floor, hiding in my private space of collapse. Eventually, I crawled out from under the bed and faced The Cloud from a position of strength. I had to. There was no one else to help. John and I were alone then.

We are still alone in this journey today.

All of the above and all subsequent posts are from my memories of the events that occurred.

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The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned and Solutions for Caregivers will be published in late 2013.

You can view John's facebook page for the complete chronological story of his life and stroke at: https://www.facebook.com/pagesDont-Stop-the-Music-John-D-Swan/260829200098

Please feel free to share these posts with others and reply, with credit given.

 2014 Nancy Weckwerth

Confessions of a Caregiver 2: The First Hospital

I really dislike parking lots. My preference is to park away from other cars to avoid dings in my doors. Then I usually forget to notice where I park the car relative to where I’m going. It’s February 12. The dark gray fog is hanging over my head like a cloud. I must remember where I have parked the car, the one I have borrowed from a friend.

My husband, John, is in this very scary place: a hospital emergency room. Running on instinct, I feel myself moving into “support” mode. I must be cheerful and helpful. I must disguise my fear for John’s sake. 

Ah, that’s what this cloud is, it’s Fear.

So it is Fear that is creeping in and settling in my psyche. I’m cold. It’s cold in this emergency room. Why are hospitals always so cold? Isn’t there enough to be uncomfortable with and afraid of without adding bone-chilling cold to the equation? I am not amused by this joke.

When I find John he’s thrilled to see me. He’s on a bed in some room, I don’t remember the room, either. I only remember seeing John. My focus is on him like a spotlight on a performing stage. Everything else is swallowed up in the blackness that exists outside of the spotlight. People in scrubs meander into the light every now and then and interrupt our conversation. Little did I know that these were the last real conversations I would ever have with him. 

The Scrubs tell me they are waiting for The Phone Call from the insurance company telling them that he is covered and they can treat him. Up until this point, there has been no treatment, merely observation, I speculate. I don’t know what time it is, or how long we have been waiting for The Phone Call, or even what “treatment” means at this time.

While I’m standing in the spotlight beside his bed, John suddenly takes his left hand and lifts up his right hand and arm. While saying “look!” he releases the right arm and it falls sickeningly to the bed. Neither of us knew what that meant at the time. It’s probably a good thing we did not know because Fear would have caused me to faint.

I vaguely remember being in an adjoining hallway with some cabinets and a phone on the counter. All of a sudden it rings and The Scrubs pick it up. They tell me it’s The Phone Call and they can now treat John. Relief spreads through me in little waves. I want to believe it is big waves but I don’t dare risk letting go of the dark Fear I’m clutching in my soul. I discover John has been whisked away from my spotlight. My thinking is so unlike my normal self. The cloud-fog is back in force because the spotlight is gone. Everything is so empty.

Later, in another more private room, not the emergency room, The Scrubs tell me they’re trying to stabilize John and keep his heart and blood pressure normalized. He’s on a monitor that sets off an annoying alarm every time he’s in danger. We now know it is definitely a stroke or Cerebral Vascular Accident. He’s had two.

I opt to sleep in a chair next to his bed overnight. His heart monitor alarm goes off and wakes me every hour or so. The Fear Cloud is becoming thicker. I run down to the nurse’s station repeatedly to tell them the alarm is going off. The Scrubs there give me the distinct impression that they can’t be bothered with coming to John’s room yet again to turn off the poisonous alarm noise spewing from the machines connected to John. 

This continues for more hours than I can track in my sleepless haze. There are far too many “whys” stomping through my brain leaving sucking noises in the muck.

Morning looms, I think, in this windowless room on February 13. It must be morning because there is the noise in the hallways of more activity. When John awakens he can no longer speak. Overnight, the swelling in his brain caused by the stroke has damaged his speech center, I later learn. Another series of “why” is jolting through my thought patterns as if I was speeding through a race over hurdles. Each hurdle a “why” appears, I leap over it, and pass on to the next hurdle. 

At one point, The Scrubs enter and tell me I may as well go home and get some real sleep. Apparently John will sleep for many more hours and there is nothing I can do. I will need my rest. I’m wrenched from the windowless room but I must have found the car I had parked the day before. 

I don’t remember driving home, either, as The Fear Cloud follows me.

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned and Solutions for Caregivers will be published in late 2014.

You can view John's facebook page for the complete chronological story of his life and stroke at:
https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.


2013 Nancy Weckwerth

Confessions of a Caregiver 1: The Phone Call

This blog is written to share my experiences, feelings, and growth that have occurred as a result of becoming a Caregiver for my friend and partner, John D. Swan. He had a massive stroke on February 12, 1991. 

There is no terror worse for me than getting that initial Phone Call telling me something had happened to my husband and he was being rushed to the hospital. He had been at a rehearsal with a small group of jazz musicians and collapsed. They were working out the tunes for a new album. I truly don’t even remember who called. It was February 12, 1991, two days before Valentine’s Day. The Phone Call told me it might be a stroke.

All I recall is a numbness setting in to my brain like a dark gray fog. Clarity went out the door for a walk – a walk that has lasted a long time. The clarity that left was that of knowing what my plans were for the future. Up until The Phone Call, my life was that of a professional musician. Each day consisted of a minimum of three hours of practicing my horn, some time writing music, performing, [depending upon what jobs or gigs (as they are called) for which I was hired], and then whatever else was in the date book. As far as I knew at this moment, this was still my life.

My husband, John D. Swan, was a very fine trumpet player. We were living in southern California. I play [French] horn and piano. We’re both composers. We’ve been publishing the music we write for about eight years now, through our own company, Trombacor Music. We also compose whatever music is required for the next gig in the date book.

When The Phone Call came, I was at my part-time job at the retail store. Since John had the car, I borrowed a car from a friend and left work to drive to the hospital, 35 miles away, to be with John.

As I drove, my thoughts were spinning. I remember thinking at one point, this is the end. This phase of our life is over. I sensed it more than knew it. In one extremely brief meme, I was sorry we had not had a child to carry his incredible talent genes to another generation. I tossed out that meme with the bath water quicker than it had appeared. It never returned and I am more than grateful for that now.

During the drive, financial panic set in until I remembered that John now had health insurance. It was a mere ninety days since he had gotten it from my employers. I was immediately grateful and relieved. 

The next panic meme was sticking me like a voo-doo pin. How will I pay the rent in sixteen days if John’s income from gigs is gone? What about the child support payments for his adopted son living very far away? Food, gas, phone bills, car insurance? A million pins were sticking me. I was quivering and trying to drive.

I don’t remember the drive, only the voo-doo pins. And the dark gray fog. 

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned, and Solutions for Caregivers will be published in late 2014. 

You can view John's facebook page for the complete chronological story of his life and stroke at:

https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.

2013 Nancy Weckwerth