The "Reel" Ending
Final Chapter in Life
Don't Cry Because It's Over....Smile Because It Happened!
Strength, courage, determination and faith…these are words that illustrate Rich’s final days on this earth.
Come with me now-- back to June, 2000 so you may be able to truly understand how things progressed.
Rich had begun to experience an occasional chest pain and accompanying shortness of breath upon walking up and down the stairs in our home. With rest, he would find relief and begin again his tasks for the day. One evening while sitting on the porch, Rich explained that he was seeing “sparks” and “shooting points of light” before his eyes. With concern of a torn or detached retina, Rich was seen by a local eye doctor. In turn, Rich was referred to an eye specialist.
Upon examination, the eye specialist explained that Rich did not have a torn or detached retina; he in fact, had a calcification or a plaque (clot) in the artery of his left eye that was causing the problem. Subsequently, it was necessary for Rich to be seen by a heart specialist in order to determine the origin of the clot.
Due to his transplant status, it was necessary for Rich to travel to UNMC at Omaha and be seen by a cardiologist and cardio-thoracic surgeon. Test after test, Rich kept his optimistic outlook. It was determined that the “heart murmur” that was detected in 1992 was a precursor to this very problem. Evidently, his aorta valve had calcifications on it (much like a rusty hinge on a door). The “door” of the valve was not opening fully and this caused his heart to have to work overtime in order to feed his body the oxygen-rich blood it needed.
That was June. By October, several more trips to Omaha were made to track the condition of his heart problem. Rich tried to mentally prepare himself for upcoming heart valve replacement surgery. Heart valve replacement surgery is rather common; however, heart valve replacement surgery on a transplant patient is not. According to Rich, this was just one more “bump in the road” and he would learn to work within his new limitations until he could have this corrected.
Late October, Rich was told by his team of liver specialists that if the surgery was not done, he would not live to see Christmas. Emotions ran high as Rich debated over the thought of having yet another surgery. Ultimately, he had resigned himself to the fact that he would not celebrate Christmas with his family and made plans to speak to each of his family groups individually, in order to prepare them. Frustration hit an all-time high when opinions from the UNMC liver transplant team and the UNMC cardiology team differed. After much discussion, it was determined that the heart valve was not severe enough to warrant surgery and that replacing the heart valve would not help at this point. Plans were to study his condition and opt for surgery if the heart valve became “significantly worse“.
Rich celebrated Christmas, 2000 in grand style with his family.
Bouts of fatigue, chest pain and shortness of breath continued and the frequency of symptoms began to increase over the next few months. Rich continued to put his physical needs on the back burner in order to fulfill his commitments to the community. As of January, 2001, he no longer worked outside of the home.
He used his time and energy to continue his mission as a volunteer in our little town. Rich would muster his strength and ignore his pain each day, so that he could deliver lunches to the retirement apartments. He would often visit his special “girlfriends” (most over the age of 70) bringing them treats or taking them to the local A&W for a rootbeer float. Once back at home, he would give into his fatigue and cat-nap in his recliner. Many times, Rich would disregard his own physical needs and serve as a volunteer to the residents of a local nursing home. He felt a need to reach out to the people in the nursing home and help them to keep in touch with the goings-on in the community. He assisted with van rides around town, harvest-viewing trips, and drives out in the country.
In retrospect, another mission that Rich had was to make people see the good things that life has to offer. Rich’s optimistic outlook was inspiring! People marveled at his determination and were curious how he could be so healthy looking and healthy acting on the outside and yet, be so chronically/terminally ill on the inside. His humor and wit and bouncing , boy-like walk enlivened others. His energy spirit and incurable zest for life gave others a reason to smile.
May, 2001 brought more news. In just a few short months, Rich’s heart valve had grown “significantly worse”. The time had come to make a decision. This decision would determine his future. Once again, a trip to Omaha was necessary. Rich was almost excited at the prospect of surgery and the hope of regaining his once active lifestyle.
May 17, 2001 (our 14th) anniversary, Rich was hopeful and excitedly intense as Dr. “G” brought the news. He was met with less than an optimistic view from the cardio-thoracic surgeon at UNMC, Omaha. Head cardio-thoracic surgeon Dr. “G”, stated that the risk of this type surgery with someone in Rich’s condition were “less than optimal”. Surgery would require Rich to be placed on a heart-lung machine and there was a potential for his liver and kidneys to be damaged. The potential for stroke and the potential for Rich bleeding out on the table were too risky for Dr. “G” to feel comfortable. When posed with the question….“what’s the prognosis if surgery is not done?“, Dr. “G” reached over, put his hand on Rich’s knee and said, “Without surgery, you’re probably looking’ at 1 or 2 years at best”. Regardless the risk, Rich was determined to go ahead with the surgery and sought a second opinion.
June 5th found us in Kansas City at St. Luke’s Hospital. Drs. Stevens and Borkon evaluated the situation and the result was the same. The risks were just too high. We retuned home with an air of defeat present in our minds. Rich said several times throughout the trip home, “One or two years….I can live with that.” He spoke of that being “enough time” to get our son graduated and sent off to the Navy. He spoke of that being “enough time” to celebrate our 15th wedding anniversary with a renewal of our vows. He spoke of that being “enough time” to get everyone used to the idea of him dying.
That’s our Rich--concerned that others would have to prepare….not that he would have to prepare. Rich was so comfortable with the thought of death. He would often talk about dying while others would shy away from the very subject. Rich was prepared to meet God. Rich was excited to meet God. Rich was ready to meet God. He was worried that others would not be prepared, excited and ready to be without him here.
Rich marked his 50th birthday on June 6, 2001. This was something that Rich never thought possible. Rich declared his 50th birthday as his “2nd Childhood”. A party and dance were held in his honor. The affair was made complete with decorations of the characters of his favorite cartoon, The Rug Rats. Rich had never danced like that before! Oh, how he danced. And, oh how he smiled! He talked and laughed with his many friends. He danced and twirled and shook his booty on the floor to nearly every song. Rich truly and thoroughly enjoyed himself with his friends and family surrounding him. He was in awe of the fact that he “made it to 50!”
Always concerned for others, Rich often down-played his health problems. Rarely would he mention his pain. When asked how he felt, he’d reply simply…”Any day I can put my feet on the floor and stand up, is a good day”.
You would think that a wife (a Registered Nurse), someone so intimately close to Rich and trained to observe and assess symptoms would have noticed the subtle changes that were occurring. Rich was very good at concealing his symptoms. The fatigue at times was overwhelming for him; however, he did not complain. Rich would purposely not talk about his health in order to keep his family from “stressing out” over what Rich referred to as the “small stuff”….the “little bumps in the road”.
Always thinking of others, Rich encouraged me to take a work-related trip to Sioux Falls, South Dakota. Being gone for nearly a week was difficult. During this time, Rich was preparing himself and getting his affairs in order. He knew that his time was growing short. Rich finalized his funeral/cremation arrangements, revised his will, visited friends and spoke at length to Sr. Marilyn. Rich was not of the catholic faith but found great peace in sharing his faith with others, especially Sister.
What is so difficult, I guess is the fact that he did not appear to be having any major changes going on with him. He looked the same, acted the same (except for a tad-bit of confusion at times), joked around the same. There were really no tips or clues that his time was growing to a close. I have thought that perhaps I missed something...some subtle hint. Replaying our conversations over in my mind...I can’t put my finger on anything that would have prepared me.
Rich’s activity level was relatively the same, perhaps slowed just a bit. He was not sleeping well at night but that was thought to be related to sleeping during the day. He had begun experiencing back pain and shoulder/arm pain when lying in bed. He started sharing with me the fact that he was indeed having pain but that it was nothing that he couldn’t handle. He was concerned that I was not getting my rest because he was keeping me awake at nights. Always concerned about others!! Other than the fact of his pain while at rest, he showed no signs of anything being wrong. His interaction with his “girlfriends” at the retirement apartments remained the same. His daily visits with my boss (his dear friend, Joyce) remained the same. His interaction with our son remained the same.
Rich voiced concerns to me because of a change in his elimination pattern and had begun having vomiting episodes. Afraid that Rich had an internal bleed going on, I encouraged him to see his doctor. This was one of the few things regarding his health that Rich actually allowed me to have knowledge. He was not eating and would vomit blood several times a day. Although distressing, Rich insisted that he would not go to the hospital and that he’d talk to his doctor. Rich went to his doctor the next day (Monday).
The beginning of the end came ultimately on that Monday-July 23rd , after his appointment. Rich came to my office and announced that he had visited with Doc May and that he was “going on Hospice services“. Hospice would come in Tuesday and get the paperwork started. Hospice? I thought perhaps his doc would prescribe something like Prilosec, Zantac, or Prevacid...not Hospice. Perhaps, if the bleed could be controlled, things would turn around for him. I asked later that night for clarification. “Rich…are you having Hospice come in so that they can help with pain control? Or, are you trying to tell me something?” He assured me that it was merely for pain control.
Our son was visiting relatives 300 miles away. Jason had been gone the entire month of July. I asked Rich if I should have Jason cut his trip and come home Tuesday. Rich had explained to Jason on the phone about Hospice and assured him that Hospice would only be there for pain control. Rich encouraged Jason to keep his plans of coming home on the weekend and not cut his trip short on his account. That to me was an encouraging thought. Surely, if Rich was trying to tell us something, he’d have asked Jason to come home sooner.
Tuesday was filled with visits from Hospice nurses and Hospice volunteers. The onslaught of visitors was overwhelming to Rich. Upon my return from work that evening, Rich was fatigued beyond anything I had ever witnessed. He was started on Morphine for pain control and slept rather well that night.
Wednesday, Rich was his bubbly self when speaking to the Hospice Social Worker. He did; however, doze off and on during the visit. This was attributed to his body getting used to the Morphine. Additionally, Rich was concerned and shared with me that he had not been able to urinate. Since Morphine can cause urine retention, this issue would be addressed with the Hospice Nurse on her next visit.
Thursday, July 26th will remain with me forever. I took an extended lunch break to allow for a visit with the Hospice Nurse. During her visit, she asked for a weight on Rich. He stumbled, weak and unsteady into the kitchen with both of us holding onto him in order to step onto the scale. Rich had gained 6 pounds overnight. His kidneys had begun to fail as early as Monday of this week. After the Hospice Nurse's visit, I stayed at the house and talked to Rich in between his dozing in and out...again, attributed to the Morphine. Or was it?
I arrived home around 4:30 p.m. to find Rich sitting in his recliner. He was groggy. I asked if he wanted to go with me to run a few errands. If I could get him into the car, he could ride downtown…just to get him out of the house for a while. Looking back, there was no way I would have been able to get him to the car. Rich bobbed in and out of consciousness and then looked at me and said, “I can’t go with you...I have things to do here.”
I returned home within the half-hour to find him lying on the couch. What was causing such a stupor? Too much Morphine? Had he taken an extra Morphine tablet? The next three hours, Rich would raise himself to a sitting position on the couch, open his eyes and sigh heavily then close his eyes again. He continued to reposition himself on the couch, open his eyes and sigh. He was taking long, deep breaths in and long, slow, “snoring” breaths out. His breathing was more regular and rhythmic than ever before. He spoke not a word but would slowly open his eyes upon hearing my voice. His eyes would not focus on me but would focus distantly upward. He took sips of water but would not respond otherwise.
Eight o’clock was when it finally hit me. This is something more than the Morphine in his body. How could I not have seen clearly what he was going through? By 11 p.m., I found myself feeling inept and unable to care for him as I knew he needed. I was uneasy and alone in the house with my husband who seemed to be slowing slipping away from me. I called the Hospice line to ask for support.
The Hospice Nurse arrive by midnight or so. My friend/boss (Director of Nursing) despite my refusal for help, came to assist as well. The three of us tried to make him comfortable on the couch. We were not able to maneuver him very well. I sat on the floor next to the couch, holding him, caressing him, talking softly to him. In an effort to get himself more comfortable, he turned up onto his side. His upper torso was half off of the couch, supported by my body. I was unable to move him without help. I called dispatch and asked that help be summoned discretely. (In small towns, things are not always done quietly and discretely. Often, people with police scanners know what is going on even before the necessary personnel have knowledge).
(now Friday…) Shortly after 1 A.M., with the help of two EMTs and a local police officer, Rich was placed carefully into bed and positioned on his side. I mopped his brow and held him. I phoned my mom for support. I was torn about calling my son. How could I tell him that Rich had taken such a drastic turn in such a short time? Why didn’t I insist that he come home on Tuesday? A thousand “what ifs” and “whys” raced through my mind.
At 2:30 A.M., I laid down beside Rich and held him in my arms. I rocked him and talked to him…telling him that Jason would be coming home in the morning instead of waiting until Saturday. Rich continued to take long, deep breaths and continued to “snore” out long and slow. The melody of his breathing was calming and soothing. I felt so safe and so secure next to him. I fell asleep holding my sweetheart in my arms. An hour later, I awoke to a soft, caress on my cheek….
Rich was no longer “snoring”...Rich had died in my arms.
Rich wanted it this way. He had said to my friend, Lyn…”I just want to go to sleep and not wake up.” Rich died a quiet, peaceful death. His face and body were so relaxed and calm appearing. Even in dying, Rich was thinking of me…he allowed me to relax and drift off to sleep before he took his final breath. Goodnight my sweetheart and thank you for loving me so.
It is vividly clear that Rich was at peace with how he lived and at peace with how he died. I thank God that he died so beautifully and so peacefully.
(And, just as a point of clarification...Rich did not die as a result of his transplant. Rich lived as a result of his transplant. He died as a result of multiple organs failing. His heart was overworked, his kidneys were overworked, his liver was overworked.)
His body simply grew tired.
