4.3.2; PAUL

 

Sept 20, 1978. We had just gone to bed. The phone rang at about 11:20 PM. We had been to a Marriage Encounter meeting and volunteered to be the “back-up” couple, to fill in, in the head couple’s absence. Paul had been in a serious accident and was at Osteopathic hospital, (now called Riverside). He had crashed into a concrete light standard on Kellogg at the bypass. He was driving our car instead of his own, for some reason I don’t recall. Joan feared he was dead, like her brother, Mick. When we got there he was in a coma and not breathing on his own. After a long night’s vigil, he awoke, still not breathing, and paralyzed from the neck down.

 

When the doctors started using words like “quadriplegic” we were filled with fear, dread and denial. The caretakers at the hospital were loving and caring, but woefully ignorant of treatment for spinal injury. Such care was often wrought with fear and superstition. At that time, when doctors were offering hope and promise to patients with incurable cancer and such, they defined spinal injury as hopeless and incurable, and went out of their way to avoid “false hope”. The caretakers allowed the spinal cord injury to swell, causing further damage. After two or three days he was found to have some mild reflex motions in his legs, but nothing was done to enhance them and they disappeared. Also, they kept him immobilized, allowing decubitus ulcers, (bed sores), to form. His injury was diagnosed as at C2/C3. (Between the second and third cervical vertebrae). The doctors agreed that there was no visible evidence that the vertebrae had been damaged. They theorized that they were displaced, then returned to their original positions.

 

 After about four weeks we had him transferred to Wesley hospital’s spinal-cranial unit. They were more knowledgeable and more proactive in their treatment. The first order of business was to get his strength up, treat the “decube”, loosen his joints and muscles with range of motion and build up his body. (He was six feet tall and probably weighed less than 100 pounds.) During his ten months of confinement, I don’t believe there was a day that he didn’t have at least one of us to visit him. He would get grumpy and his mother would scold him and remind him that his caretakers did not cause his predicament. People would say, “ How can you scold him?” She would say, in effect, because I love him and he is the same person now that he always was.

 

When he arrived at Wesley he had several decubes including one on the end of his spine, which formed a crater about the size of a hockey puck, which was not responding to treatment. They were considering surgery, unsure of how it would turn out. That Sunday, Joan asked the priest to have the congregation pray for this special intention. The next day, when we got to the hospital they announced that the sore was beginning to heal.

 

Paul was on a respirator, connected to a trach, ( having had a tracheotomy),  thru a flexible tube. It was removed to “suction” him. (insert a catheter down his throat to remove mucous.) When the tube was removed for this purpose, an alarm went off. One morning we got a phone call to hurry to the hospital. Paul’s tube had popped off and no one answered the alarm. When it was finally replaced, he remained unconscious for several hours and we didn’t know if he had had brain damage, organ damage or what. Apparently there was no damage at all, but I think they expected a lawsuit and they apologized profusely. Joan often said she prayed that there would be no brain damage, and when there wasn’t any, she regretted not asking God for more.

 

The next half year dragged on, routine, but never boring. One of the “omnipotent” neurosurgeons inserted a phrenic nerve stimulator in his chest, intended to activate the nerves which make him breathe, but I’m not sure anyone there knew how to check it out. Doctor Snyder said he knew how to install it, but didn’t know how it works. We found out a lot about doctors during this ordeal. Some think they are God-like and some think they are God Himself. The experts said Paul would be in denial, and then depressed and suicidal. When we told him this he said it never occurred to him to try suicide, and besides, there was no way he could do himself in, in his condition.

 

As Paul got stronger, different things were tried. He had been fed through a stomach tube. The glop they gave him was blue. I don’t know if it was intended, but when you saw something blue leaking from his trach, you knew from whence it came. When they proposed to feed him by mouth, they warned him that terrible things could happen if it went down wrong. They didn’t know his mother had been giving him food and drink for several days. Later, when I went to St Paul, MN, to investigate the Spinal Chord Society, I met a young man who, after years of treatment, with a disability less than Paul’s, was still being fed thru a stomach tube.

 

As Paul progressed, he got a wheel chair with backrest and a portable respirator and battery, and got to go about the hospital and go outside for short periods. It appeared that Paul might not spend the rest of his life in the hospital. But where and how would he be cared for? In shock and disbelief, I found the answer was “at home”. While I was still in shock, Joan was making plans. He was brought home for a couple of “training” visits. Faster than I thought possible, the house was made accessible. The walk-in closet to his bedroom became a bathroom/shower, the lavatory became a hallway and the main hallway lost a wall. The stairway to the front porch became a ramp, a new sidewalk was poured, a used van was purchased, a wooden ramp built for it and equipment, (a portable hydraulic lift, a full size respirator and a modified raised water bed, etc.) was purchased with the help of the J I Case insurance plan. I surprised myself by doing much of this work myself, with the help of my sons. We were told at the hospital that people in his condition usually lived for about two years and spent much of that time in the hospital.

 

So Paul came home to almost 13 years of “intensive” care. I “ ranged” him twice a day, Joan and the nurses a couple more times. Joan was in charge of home care and “nursing” the nurses. Every Tuesday, Joan and the nurse would hoist him in his net-like sling, wheel him to the shower, put his portable respirator behind the shower curtain, and Joan would give him a shower. In the hospital, at first, Joan would not even watch while he was being suctioned. When he was home, she not only suctioned him, but changed his trach as well. They sometimes leaked, and needed to be changed periodically to prevent infection. At first, as instructed, we took him to the emergency room at Wesley to have them replaced. About the second time we did this, we found the doctor carefully reading the instructions before starting, at which time Paul decided “we can do this”. Some of the nurses nearly fainted when Joan first announced, “Now we will change his trach”.

 

We had nursing help for about eight hours a day. Detailed, comprehensive schedules& procedures were setup by Joan and updated as required. We had a parade of nurses, working part time. It took at least two and preferably three to fill our needs. We learned from them and they learned from us. There was Ann, a Quaker who grew up as the daughter of a missionary in Africa. She knew some unconventional methods. Susan introduced us to Carrington lotion, (now called Carasyn), which cured decubes about five times as fast as the beaded stuff they used at the Wesley. She went back to school to become a doctor. We think Paul sort of inspired her. Stephanie was a young “airhead” who formed a sort of brother-sister relationship with him. A typical comment: “They keep wanting me to make monthly payments on this bill. Don’t they know I’m going to pay it off, in full next month? Suzanne was a pretty redhead and mother who traveled with us when we took Paul to St Louis for a week. She remained friends with us and we still correspond.

 

Bernice is hard to describe. She was a burly middle- aged woman who came on like a herd of buffalo. She was a very good nurse, But… Her attire was strictly Goodwill Industries. She was a “jack-of- all- trades”, Avon lady, notary public, sales rep. for other items, who charged for baby sitting her own grandchildren. When we had company, she would sit down in the middle of the group and join in the conversation. She had a tendency to “take charge” when Joan was supposed to be the “take charge” person. Dealing with all these personalities took a lot of finesse and discipline, and Joan did an outstanding job of it. Joan was good at giving advice, both medical and personal and, I believe it changed our nurses’ lives for the better.

 

Then there is Berdina. Berdina is a loving, caring truly good person who was often mistreated by the ones she loved the most. She was intimidated by Joan at first, but learned to deal with her and the rest of the world. She went on to become a dear friend to both of us as well as our head nurse. When Paul died, she was traumatized and ill for months. She still is one of our closest friends.

 

Paul’s plight was published in the newspaper also. Bob Getz, a feature writer for the Eagle did a story on our situation, and a fund was set up for contributions. We got several thousand dollars, which was spent quickly, and several touching letters, which we cherished. (It would not be an exaggeration to say his first year’s costs exceeded a million dollars.)

 

1980; This was another pivotal year. I lost a job and found a job, Joan went to Denver and Phoenix, Paul went to Phoenix and I went to St Paul, MN and Las Vegas.

 

Along about Easter, I was called into the manager’s office at Case and told; Times are tough, you are laid off, two weeks pay in lieu of notice, pick up your things and be gone. Medical coverage was to continue for the next year, (As a “pre-existing condition” he would not be covered by my new employer.) Fortunately, I was hired by Boeing, by Memorial day.

 

Meanwhile, we had been looking for a rehab center, which might be able to improve his condition. Joan went to see Craig, in Denver and talked to Good Samaritan, in Phoenix. Craig didn’t really want him because he was on a respirator. Good Sam welcomed him with open arms. The first problem was how to get him there. The airlines would not accept him because of the respirator. Surface travel would take too long and be a hardship for Paul. Finally, the insurance company agreed to charter a Cessna citation, at a cost in excess of

   $4000 each way. (This was Case’s insurance and I didn’t even work there anymore.)

 

So we went to Phoenix, Paul, Joan and I, two pilots and a female “attendant”. Joan was going to stay at the home of  sister-in-law Shirley’s sister Dianne and family for a few days for a “transition” period and I was to go back with the plane. The crew, not knowing that I was to return, had planned to stop at Las Vegas on the way back. So, when they asked if I would mind stopping on the way for free dinner and drinks, it seemed to be “an offer I cannot refuse”.  I called home, (from 35000 feet to let them know I would be delayed and, when Joan called to see if I had arrived, Terry gave a slightly garbled version saying I was in Los Angeles.

 

Doctor Dugan and his staff tried every trick they had to get Paul’s stimulator to work, to no avail. In the process they learned how stubborn he could be. We heard again, “can we sit on him”? We did learn one important thing from all this, which, we believe, greatly improved his health. They stimulated his bladder daily, by tapping in his lower belly, thus draining it completely, eliminating the accumulation of the foreign matter that causes infection. (Urinary infection is probably the most common reason that quads become hospitalized). We brought Paul back in July. The temperature was 108 degrees and getting him off the plane and onto his van was very uncomfortable for him. It took him days to recover from the trip.

 

I think it was in 1980 when I read about the Spinal Cord Society on the editorial page of the newspaper. It seemed that someone was interested in trying to find a cure instead of telling us how to “cope”. They were having a meeting in St Paul. MN, and we decided to look into it. So I flew up and attended. It was interesting and amusing. About the second day I got on the elevator and a man asked a common question, “where are you from?” It turned out that they were from Wichita, too, and, to make a long story longer, they came up on a private Cessna twin belonging to Bob Love, (I think his name was Bob), of Love Box Co. in town, and they invited me to join them on the trip home. On the way, we dropped Mr. Love at Orr MN, (13 miles from Canada), where he was going fishing. After the Las Vegas episode, Joan wasn’t surprised to get a call from me from Orr Minnesota. We are still active in fund raising for SCS.

 

Regarding SCS, we did stay in contact with them. Brenda Potter, who became quadriplegic when struck by a drunk driver running a red light, formed a local chapter which we joined. It deteriorated into just Brenda’s family and us. We did annual fundraising, usually a “bluegrass” concert with the help of a local country radio station, with limited success. Then, in 1990, we were contacted by Liz Sims, a fellow parishioner, who was trying to raise money for a group home for mentally disabled. With the help of the church, she was organizing a golf tournament and knew of our experiences and proposed that we go together to organize the tournament. So we did. A month or so before the tournament, Liz, who had been doing a lot of physical work at the group home, was hospitalized with a “minor stroke. While there she was diagnosed with cancer, which raced through her body, and she died the night before the tournament. So it became the annual Liz Sims Memorial golf Tournament. We had the 14th annual tournament in 2003. Brenda, who had two children after the accident, (now grown), and her family are close friends.

 

 

So  we resumed the routine of caring for Paul. The first thing I did in the morning was to turn him, tap his bladder and range him. The last thing I did before going to bed was to range him again. Joan and the nurses did a lot more during the day and night. The quality of their care was attested to by the professionals. Paul had several broken bones, which were not cared for when he was fighting for his life. There was a broken arm that Doctor Murphy attended to belatedly. He had a broken jaw, which was not attended to. When doctor Rensner, the Dentist, worked on his teeth, he had him anesthetized, then got on the table and pried his jaw open to work on him. Every time he did that, he uncovered him to show the nurses what good condition his skin was in, and congratulated us for same.

 

For a while we didn’t get to go to church together. We didn’t have nurses on Sunday so I would go to one mass, rush home, and Joan would go to the next mass. Then we got permission to keep a nurse on Saturday evening, so we could go to the evening mass, then go out to dinner. This became our special time together, a temporary escape from the responsibilities as caretakers. This may have saved our sanity. We still almost always go to mass and dinner on Saturday night and it is still a special time.

 

Doctor Fields had a lot of respect for Paul, and a lot of frustration dealing with him. He actually made house calls to see Paul. When Paul was on Medicaid, and Fields didn’t accept Medicaid, he finally treated him for free. Paul was always “second guessing” the Doc, and was usually right. Doc would prescribe “medicine A” for congestion and Paul would say, “no, that didn’t work last tine, give me “medicine B”. Paul was very cognizant of his care and his respirator. He often told the technician what to do to fix the machine. 

 

Some of the other doctors didn’t understand Paul. When he had something wrong, his system often responded by exhibiting diaphoresis, profuse sweating that soaked his clothes and the sheets. An internalist, specializing in ulcers and such, tried to convince us that he couldn’t have ulcers as the symptoms were wrong. Joan had to explain to him that Paul’s body was not typical and couldn’t show the proper symptoms. The god-like doctor was embarrassed to find that he did, indeed have ulcers. There were many similar events through the years.

 

Another case of too much “expertise” follows. One day we brought Paul back from the hospital following treatment for an infection. When I went to range him and put him to bed at 11, I saw that his leg was swollen to about twice normal size. It was apparently phlebitis, caused by a blood clot. A few minutes later the ambulance arrived and the paramedics seemed to be intimidated by Paul’s (disability) condition. They wanted to call a helicopter, but couldn’t figure where it could land and how they would get him there, (Of course it was winter with snow on the ground and a howling wind.) When we got to the hospital we were warned that the clot could move to his lungs and that could be very dangerous. When he was admitted, he was told what the settings would be on his MA1 respirator, the same model he had at home. He protested, knowing his own machine, but was ignored.

 

The phone rang at about 2:30AM. Paul was having breathing problems and wanted the MA I set his way, but nobody wanted to disturb “doctor’s orders”. We were furious. They wouldn’t take our word, or Paul’s, to reset the respirator. They finally got permission to set it right and things improved somewhat. Part of the cause of his distress, (surprise, surprise) was that a clot had indeed migrated to his lungs.

 

One night to be remembered while we were at home went like this. There was a blizzard outside, with snow, howling winds and a temp of 15 degrees. The lights went out around 1AM and Paul’s respirator quit. We had to hustle to get him on the portable. About an hour later the portable quit with a dead battery. While Joan bagged him with our ambubag, I stumbled out into the cold, dark, garage to remove the battery from his van. Soon all was well, although cold and dark. We were on a priority system with the electric company. Although there were only four houses in the dark, the service men came out and repaired our transformer in the blizzard, finishing at about 4 AM. We thanked them and offered them a hot drink, but they had other calls to make.

 

Paul’s health and welfare got a giant boost when we bought new carpet along about 1981 or so. With a major purchase, Star Lumber was giving away a Texas Instruments computer. By today’s standards it was a pitiful 128 K capacity, but Paul latched onto it with a vengeance. With his photographic memory, he would read a page of instructions and never have to refer to it again. When he found out he could compose music on it, his world expanded mightily.

 

Next, Paul got a Yamaha music maker computer and started composing for real. Instructing the nurses, step by step, He composed and copyrighted about 50 tunes. Some of them merged with real instruments and vocals, performed by friends. His tunes are complex, almost symphonic, using multiple “instruments”. He said he couldn’t read music, but he could write it. Once he started composing, his health improved, his attitude improved and he began to “socialize”. The internet had not been “invented” yet, but, by phone and by mail, Paul was making friends and trading information with folks all around the United States, Canada and England. When he died, many of then told us they had no idea how “handicapped” he was. On a good day, Paul’s routine included getting his “care”, lunch, wheeled out on the deck for some sun and a couple hours on the computer. Dee Starkey , of Starkey Music, formed a relationship with Paul. When a new “gimmick” came along, Dee would give it to Paul to try and to evaluate to see if it was worthwhile.

 

I was interviewed by Boeing regarding their “good neighbor” charity campaign. When they learned of his music, they sent a musician to visit him, and the musician wrote words to one of his songs and their choir sang it on several of their recitals.  It was called “Sunshine and Shadows”. They also printed an article with pictures in the company newspaper. He was also interviewed on the TV nightly news. He was a celebrity, of sorts. He was known and treated as someone special whenever he took me shopping for musical “stuff”. (When it came to musical things, he could be a “pill’. He would “audition” a set of speakers in the store, then, if the quality was not right at home, back we would go.)

 

In 1991, Paul went on his first “out of town” trip. Preparing for it was something like preparing for the Lewis and Clark expedition. Paul had a full size van. Still, with clothes and accessories for four people, Paul’s chair, pillows, pads, portable respirator, battery charger, 12 volt and 110 volt suction machines, catheters and nurse Suzanne, we needed a car top carrier before we left. Then we had to find a motel with an accessible room with a waterbed. We found that at a Motel 8, near the airport with adjoining rooms and an accessible Denny’s restaurant next door, which worked out very well. Suzanne stayed with Paul and probably didn’t get much sleep, while we slept “next door”.

 

We went to a King family reunion, visited Bill and Shirley, visited our old neighborhood and took in some of the sights. One of them was the riverfront. There was no way Paul could go up the arch, but he did go for a short excursion on the riverboat “Huck Finn”. There was no easy access, but the crewmen lifted him bodily, respirator and all, onto the forward deck. Paul enjoyed it thoroughly. He did not much enjoy, nor did I, getting in and out of the van, parked “in the tilt” on the levee in the 95 degree heat. Driving home across Kansas was an adventure. There were tornadoes about and a high wind whistling thru the straps that held the car top carrier and we wondering what we would do if we saw a tornado coming our way. Altogether, the trip was extremely successful.

 

It opened Paul’s eyes and imagination to the point that he was colleting data and planning more trips. We were preparing for a busy future. Little did we know that this first trip would also be his last. Looking back, we were so very grateful that he was able to enjoy the one trip.

 

For years we had tried to get Paul interested in a motorized chair, so he could have a little more independence, but he always resisted for reasons we did not quite comprehend. But after his trip he changed his mind and we arranged for one to be delivered to be adapted to his requirements. Ironically, the chair arrived in Wichita the day he died.

 

For some years we had been concerned about what would happen to him when I had to retire. The coverage would be a supplement to Medicare, and Medicare had no coverage for the type of care he needed. The “ experts” from Medicaid and SRS carried on about what wonderful care he was getting, but sadly stated that there was no way to get help from the state.

 

In January of 1992 we went to an Independent Living Resources conference in Topeka to see if   we could learn if something could be arranged. In fact, we learned that there was help available for “special circumstances” like his and all the local “experts” didn’t know what they were talking about.

 

We left Paul in the care of head nurse Berdina and a relatively new nurse, Gale Rich. She seemed capable, but seemed to lack empathy for Paul and she just didn’t seem to “fit in”. We planned to dismiss her after the trip. What we did not know was she was having marital troubles, was taking pain medication which made her drowsy and that a previous patient, a young boy, had died while under her care.

 

On the morning of the second day of the conference one of us, I forgot whom, forgot a notebook and I went back to our room to pick it up. While there I saw the message light, on the phone, blinking. The message was to call home. Berdina answered, hysterical, and told me Paul was dead. I don’t know what was more painful, finding out, or having to tell Joan. I must have looked ghostly, because she knew immediately that something was terribly wrong.  We decided to drive home, instead of flying and leaving the car. We found a doctor who gave her a sedative and the long drive home gave us a chance to contemplate the reality of what had happened.

 

Paul died January 25th, the feast day of the conversion of St. Paul.

 

Gale’s story was: The alarm went off at 5:30 AM and she suctioned him, and asked if he was all right and he did not answer. She went back to bed and slept till 7:30 and went in to check him and he was dead. She called Berdina, instead of 911. Berdina rushed to the house and called the authorities and us. (In our absence, Steve took charge of the comings and goings.) 

 

We believe: The alarm went off at 5:30, (it was very loud).She slept thru it, woke up later to find him dead, panicked, and called Berdina, and made up a story.

 

We played Paul’s music at his funeral. It was attended by many whose life he had enriched. The newspaper wrote a nice obituary. (attached).

 

Paul liked all kinds of music, from heavy metal to classical. (The exception is “rap”, or whatever they call it now, which we don’t consider to be music.) when his mother asked, “doesn’t it give you pleasure to have other people enjoy your music?” He replied something like “I play my music for my enjoyment”.

 

You will note that going “ through the years” not much is being said about the eighties. While Paul kept us abreast of music during this time, we were so busy with Paul we missed out on history, politics and entertainment of the times. The eighties were a blank spot in our memories. On the other hand, taking care of Paul gave us a sense of purpose and accomplishment that more than made up for whatever we missed. To paraphrase the quote a parent of twin adult sons with Muscular dystrophy, “Taking care of him wasn’t a task or a responsibility, it was a privilege”. As the song says, he was the wind beneath our wings.

 

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