jaltman81

Well, we’re almost to the end of this story. After a period of extreme emotional response to the news that Lynette was dying and that she would be admitted to hospice, Connie Mitchell Shelton and Joey Shelton offered to let Luke and me use their unoccupied house in Belhaven for the night. This would save us a 35 minute drive back to Harrisville. Lynette’s sister Linda was going to stay with her at the hospital. I can’t say I slept much that night, but it WAS good to avoid the long drive.

The next morning Lynette and I waited for the hospice admission nurse to come. She was reasonably prompt. Lynette understood what we were doing and she signed her own admission papers. I then went to the house in Harrisville to wait for the durable medical equipment delivery man to come with the hospital bed for Lynette. It was set up in the living room, just steps away from the room where I’d be sleeping and allowing her to see those who came and went.

I took Luke and Sarah to the new Pearl Steak n Shake for supper that night. The four of us had always enjoyed going there on our trips to Florida. The three of us enjoyed our meal, though it was a somber time.

The next morning, December 10, was spent waiting for the ambulance that would take Lynette home to arrive. By now she could not walk safely or otherwise care for her own Activities of Daily Living. She was conscious and able to talk and communicate, but she was quite weak. It certainly would not do for me to take her home in our car, which was how I had brought her to Jackson a week earlier.

Sarah took Luke home and got Lynette’s bed made. When the ambulance arrived, they sent me ahead to wait for them. We got her situated in the bed about 4:00 that afternoon. Luke asked me how long Mama had. I told him that the doctors expected six months or less. I certainly hoped for the longer period.

That Sunday evening Lynette and I caught up on her favorite show, Jane the Virgin. It was a little odd for her to be in the bed, while I was on the love seat/recliner, but it was still good to have her at home.

She called me once in the night to help with personal hygiene. She was a little distressed that I had to do this for her, but I didn’t mind. I’d have been glad to do it every day for six months.

The next morning we sorted out what was the “new normal.” I spent some time in my nearby home office catching up on internet, while playing “Favorite Christmas Songs Written by Jews.” Luke sat next to her bed telling her about pro wrestling. He was glad to have his favorite audience available.

The Hospice Ministries social worker came by and completed her “pycho-social assessment.” One of my folks from Harrisville UMC brought by a cake he had made and the best peanut brittle anyone has ever made. The Hospice nurse and home health aide came. We agreed that the home health aide would come five times a week, meaning that personal hygiene could be handled by someone not a relative. We got the “emergency” kit for pain and shortness of breath. Lynette asked about inpatient services. The nurse said that at her current level of health and functioning, it wasn’t necessary.

One of Lynette’s folks from Rexford brought some vegetable beef soup. Lynette could eat that and enjoyed it. Two folks from St. Paul in Ocean Springs also came. Lynette carried on gracious and friendly conversations with all of them.

I was able to get to Florence to get Lynette something she REALLY wanted-a cup of Sonic ice. This helped keep her hydrated and comfortable.

That night we got caught up on our other favorite show, The Good Doctor. I told her goodnight and that I loved her.

She didn’t call me in the night. I woke up around 7:00 the next morning, saw that her nasal canula for oxygen was in place and just thought she had passed a peaceful night. About an hour later, Luke came downstairs. He said “Daddy, I can’t wake Mama up.” I then got closer and saw she was not breathing. I called Hospice Ministries. The home health aide was already on her way. When she arrived, she checked Lynette and said “She has expired.” I actually don’t care for that phrase, since I certainly didn’t think she’d passed her “sell by” date.

I began making my calls, first to Sarah. Sarah had been completing her work for the semester and was planning to be at home that afternoon. She was QUITE distressed that she hadn’t gotten to spend any more time with her Mama. I then called Lynette’s sisters, then my father, sisters and brother. I also contacted Chancellor Funeral Home.

I had been a hospice chaplain and knew the protocols for a death of a hospice patient at home. That didn’t make it less distressing to be the family member.

The nurse who had been there just the day before said “I’m surprised. I really thought she’d be with us for a few weeks.” I thought so too.

When the folks from Chancellor came to take Lynette’s body away, Sam (our 14 year old dog) registered HIS distress about these events. Sam never cares much for “outsiders” in his house, but I think he knew this was also Lynette’s final departure. I could be reading too much into his vocalizations, but that’s my story and I’m sticking to it.

The nurses DID eventually get Lynette’s breathing (with oxygen assistance) back to a sustainable level. Sill, I knew we had crossed a line from which there was no return. Not long afterward, the doctor from Jackson Oncology came in. The scans showed significant disease progression. There was fluid on her right lung, as well as her left. We could put a drain on her right lung to ease the breathing difficulties that went with the fluid, but that was, at best, a “comfort measure,” not curative. That doctor quoted Lynette’s UMMC oncologist: “This is a very aggressive cancer.” Finally, my thick head understood what they had been saying for 16 months. “We can try to slow this down, but we can’t stop it.” All “slow down” efforts had now been exhausted.

Lynette came to enough awareness that we were able to discuss where things stood. She also understood that we needed to move toward comfort care, not cure. Now, we had the hardest part of all. We were going to have to tell our children.

Sarah had been fairly vigilant throughout the process, but had not knows as many details as I did, since I was the one present for all the conversations with the doctors. She knew the difficulties Lynette had had with her neurological issues earlier in the week. Now, I’m convinced that the neurological issues were a manifestation of the disease progression. Luke had chosen the path of “I don’t really want to know.” This was going to make the conversation VERY difficult.

Lynette’s sisters were also coming from north Mississippi that Friday afternoon. I asked Guyanne to go to our house in Harrisville to bring Luke to St. Dominic’s. Linda sat with us for a while that afternoon. I now know that she had been taken aback by how much it hurt Lynette to have her lungs drained when she saw the process during her earlier hospitalization at Baptist. She was “ahead” of me by a week or so in knowing we were near the end.

We asked the case manager at St. Dominic’s to contact Hospice Ministries for an admission consultation. Hospice Ministries has an inpatient facility. We considered it a possibility that we would eventually need inpatient care. I also had come to respect this particular organization during my work as a healthcare chaplain in the Jackson area.

At some point (I can’t remember if Linda or someone else was present) I asked Lynette if she was mad at me for “giving up.” She said “No! You silly man! You’ve done everything anyone could expect.” I knew that we are, at least, on the same page.

Luke and Sarah arrived for the hardest conversation I’ve ever had with them. I told them that the doctors had done as much for Mama as they could. I said we are going to bring her home on hospice.

Luke said “Do you mean Mama’s DYING?” This was a bolt from the blue for him. He sobbed and screamed. I knew what he meant. Sarah and the rest of us were crying as well, but Luke was the one who was acting like he’d been punched in the gut. It was the worst day of our lives (up to that point.”

As I said, the research nurse at MD Anderson had said that Lynette needed to be back at her November 13 “baseline” of self-care and mobility in order to participate in the clinical trial. Lynette was receiving daily Physical and Occupational Therapy. Her speech difficulties had (mostly) resolved, i.e. she could make sentences and communicate, but the reality was that she was NOT getting better at mobility and self-care. She was now pretty much bedfast and not able to do what Occupational Therapists call “Activities of Daily Living.” For the first time since her diagnosis about fourteen months earlier, I began to ask myself if it was time to “stop” efforts to slow the cancer’s progression down.

I was aware that another Mississippi United Methodist clergy with cancer, Jim Biedenharn, was by then on hospice service. I contacted his wife, Clare Richardson Biedenharn, also a Mississippi Conference clergy and healthcare chaplain, to ask how they had come to make the decision to “stop” curative treatment.

Clare basically went through a brief history of their clinical journey. I actually don’t remember that she even said what was the final trigger. It just was clear that she “knew” when it was time to stop. At this particular point (Tuesday, December 5) I didn’t “know.”

Most of Lynette’s care at St. Dominic’s was under the direction of the St. Dominic’s hospitalists. It was somewhat odd that they were treating a cancer patient, but her oncologists (who had staff privileges at UMMC, but not at St. Dominic’s) were not readily available. Eventually, Jackson Oncology WAS consulted. I spoke with THOSE doctors about where things stood and gave them the names of her UMMC oncologists. One thing that was clear was that we needed updated scans to see where things stood with Lynette’s cancer progression. Her last UMMC scans had been in mid-September and her last MD Anderson scans had been in late October/early November.

Friday morning, December 8 dawned with an inch, plus of snow on the ground in central Mississippi. Though this likely seems inconsequential to people from Northern climes, it’s a crisis in central Mississippi. The “snow removal plan” is “wait for it to melt.” I couldn’t do that, though. I needed to get from Harrisville to St. Dominic’s, a distance of some 15, plus, miles. I got there and didn’t slide. Lynette was scheduled for her scans that morning.

I saw her off, and waited. About noon, she returned from the scan. As she was being transferred back to the bed, her oxygen saturation levels (“sats”) dropped into the 70s. She was quite distressed, in air hunger. As the nurses went through their protocol to try to help bring her “sats” back up, they asked me “If this does not work, do you want us to put her on a ventilator?” It was the “final exam” question for which I’d been studying for more than twenty years, without knowing it. All I could do was shake my head “No” and sob. I knew the answer. I knew what Lynette would want. I knew that “life” on a ventilator is no “life” at all.

I mentioned that Lynette was at St. Dominic’s because there were neurologists on call. I’m reasonably certain that a nurse practitioner associated with Dr. Ruth Fredericks saw Lynette and reviewed her chart and scans either on that Sunday or Monday. At some point early in the week, that practitioner delivered her opinion that Lynette had NOT had a stroke. I know I never saw Dr. Fredericks. I don’t think Lynette did either.

I contacted the research nurse at MD Anderson that Monday to tell her that Lynette was back in the hospital. The nurse told me that Lynette would need to be back close to the “baseline” she was on November 13 (walking independently, not on oxygen) to resume participation in the Clinical Trial. She indicated that the whole screening process would need to be redone. I communicated that to Lynette. At least on Monday,she thought that was a “makeable” goal. Vickie White, from the Conference office, came by that Monday to visit with us. I told Vickie what was necessary for Lynette to be able to return to MD Anderson. Lynette said “You just hide and watch!” For those who don’t “speak Southern,” that means “I’m going to do it.!”

Sitting with Lynette was beginning to become exhausting for Sarah and me. I reached out to Lynette’s Dream Group for assistance. Sarah’s friend Simon saw these women in action. Simon said Lynette had “An Army of Ladies” to care for her. I am eternally grateful to that “Army of Ladies” for the way they cared for Lynette and for us in that week.

We began what would prove to be the final pivotal week of our cancer journey on that Sunday, December 3. I got Luke some breakfast and went back to St. Dominic’s to sit with Lynette. Sarah had an internship with Christ United Methodist Church’s choir. That morning they were to do a Service of Lessons and Carols, a service Lynette and I both loved and had taught Sarah to love.

I don’t recall if anyone gave us medical updates that morning. I can only discern that they did not diagnose any sort of active stroke.

The Millsaps Singers were to also lead an Advent Service of Lessons and Carols that evening. Sarah was to have a solo during part of the service. I really wanted to both be present and to find a way for Lynette to see and hear. Our District Superintendent, Connie Connie Mitchell Shelton, came to the hospital about 1:00-1:30 and brought us Communion. I am SO grateful she did so. I didn’t know that would be the last time Lynette and I would have that sacrament together, but it certainly makes the time more special.

Connie agreed to sit with Lynette during the Service of Lessons and Carols. I was planning to broadcast the service on Facebook Live, but it turned more complicated. Fortunately, Joey Shelton was able to “Facetime” between his and Connie’s Apple devices, and Lynette and Connie were able to see and hear most of the service.

Sarah again spent the night with Lynette at the hospital and I went home to be with Luke. Unfortunately, whatever neurological problem Lynette was having was also making her restless. She began trying to get up when it was not safe for her to do so. She also was not processing either Sarah’s nor the nurses’ instructions. This was a new development and was quite distressing to Sarah. It was also interfering with sleep Sarah needed to get to complete her coursework on what was her last week of the Fall semester.

As I said a week or so ago, on the evening of December 2, 2017, Lynette was having great difficulty articulating what she was thinking. I could tell she KNEW what she was trying to say, but she just couldn’t form the words. I called her Home Health nurse to report this. The nurse told us to take her to the Emergency Room. All of us suspected this might be a stroke or TIA (Transient Ischemic Attack).

I took her to the Baptist ED. Sarah followed in her car. As had happened before, Lynette was taken back to a treatment room right away and scheduled for a quick CT of her head. I was aware that if they stroke was an “ischemic” one, they could give a clot busting drug to break up the clot and minimize brain damage, but it if was a “hemmorhagic” stroke, then the clot busting drug would make the bleeding worse. A CT is necessary to make that determination.

A “hiccup” came to the fore very quickly. Baptist did not have a neurologist on call that Saturday night. This was, apparently, news to the ED nursing staff. Their frustration was quite evident. I’m pretty sure the ED doctor was able to make a determination on whether Lynette was having an ischemic or hemmorhagic stroke, but further assessment of the reason(s) behind her speech difficulties would require time and training the ED doc did not have.

The most obvious solution was to transfer Lynette to UMMC, where her oncology doctors were based and where a neurologist MUST be on site at all times (Since UMMC is a Level 1 Trauma center). Unfortunately, UMMC was “at capacity” and unable to take even an emergent patient at that time. Therefore, Lynette was transferred to St. Dominic’s, which was neither “at capacity” nor without a neurologist on call.

We had left Luke at home. I went back to Harrisville to sleep and be with Luke and deputized Sarah to get her Mama settled at St. Dominic’s.

Shared with Public

The Millsaps Singers winter/Christmas concert was Friday, December 1. Sarah was the student conductor of the Singers and was to conduct one of the numbers. With wheelchair and oxygen on board, we made it just in time for the beginning. We had to sit at the very back of the Recital Hall, but I was able to get video of Sarah conducting the number. We even had a fun trip to Babalu Tapas for supper afterward.

The next morning, December 2 was the Harrisville Christmas parade. Sarah and Lynette sat on the front porch to seem the parade leave. I ended up on the Harrisville UMC float. I wasn’t planning to. I was wearing a short sleeve t-shirt. That worked out though.

Lynette had found prayer shawls on an Etsy site. She wanted to order enough for everyone in her Dream Group. She ordered two. She was determined to order more. The problem was that she had ordered the only two of that design that existed in the world. In the early evening of December 2, I found her punching her I pad with her finger. I asked what she wanted. “I need the two.” “I need the two.” I couldn’t get anything else out of her. I called the home health nurse and described what was happening. The nurse said we needed to take her to the Emergency room. Back we went to the Baptist ED. There’s more to tell, but I’m taking a break.

Lynette woke me on Thanksgiving morning, 2017 to tell me she needed to go to the hospital because she was so short of breath. From that day to December 12, the roller coaster pretty much went only “down.” Remembering the the admonition from the UMMC nurse, we decided to go to Baptist. I was sure I could get her there faster by driving her than we could by waiting for an ambulance. Sure enough, when we arrived at the Baptist ED and we told them Lynette was short of breath, they took her straight back to the treatment room.

She was on oxygen from that time forward. It took several days of attention from the hospitalists to feel that we had her shortness of breath under control. I was not in the pulpit on November 26 (and would not be until January 14). Lynette’s sister Linda came to see her at Baptist on Thursday, bringing smoked ham and other goodies from her Thanksgiving dinner. We never had our family Thanksgiving dinner otherwise.

One event we were determined to make was Sarah’s senior voice recital on November 27. By great effort, home oxygen services were arranged and Linda helped Lynette get dressed for the event. Linda had previously gone on Saturday, the 25th to help Sarah shop for her dress for the recital. Sarah was doing an internship at Christ United Methodist Church in their music department. One of the church members had very generously given her money to shop for a recital dress. This person, plus another from Christ also took care of providing refreshments for Sarah’s recital.

There are pictures of Sarah, Lynette, Dr. Rob Pearigen (President of Millsaps) and me from the night of the recital. I’m sure I don’t really appreciate how difficult it was for Lynette to be present for that event, but she was there. She didn’t make it to Sarah’s graduation or even to the “fake graduation” Connie Shelton and Phoebe Pearigen were planning, but she made it to that. We are most grateful.

Lynette came home on oxygen and pretty much dependent on a wheelchair we were lent by David and Denise Ware of the Harrisville church. She could stand and walk a few steps, but she was going downhill.

A home health agency began seeing her after her time at Baptist. In addition to a nurse, a physical therapist came to see her. She actually did some walking around the first floor of the house with him. Even at this point, we were hoping for her to become strong enough to return to MD Anderson for treatment.

The first three days of the fourth week of November 2017 were unremarkable. We continued working on Lynette’ sliding scale insulin with increasing success. Sarah had class on Monday and Tuesday, and was planning to come home on Wednesday. We had an invitation to join Lynette’s sisters at her sister Guyanne’s house in Iuka for Thanksgiving. We decided that the length of the trip and uncertain medical services made that unwise, so we were planning on a Thanksgiving dinner for the four of us in Harrisville.

The morning before Thanksgiving Lynette got off the phone with Sarah following an early morning meeting. Sarah was set to do her student teaching the spring semester of 2018, but she still needed a lab science to graduate. Lynette said “Guess what? Sarah is going to take Astrology!” I found this disconcerting. I wondered if standards at Millsaps had dropped precipitously in the 36 years between my graduation and that day. Of course, Sarah was going to take ASTRONOMY, not astrology.

B.B. Watson of Marvin United Methodist Church in Florence stopped by around noon to bring us a pumpkin pie he had baked. He asked Lynette what else he could do for her. She asked him to pray for her. Luke was watching all this closely. He said “I don’t go to church anymore, but I’m glad for anyone to pray for my Mama.”

That night we had a conversation/discussion about WHEN we needed to put the turkey in the roaster. I had located the full version of WKRP in Cincinnati’s “Turkeys Away” episode (the funniest Thanksgiving show ever). We were anticipating a pleasant family day.

We had left Luke with his Aunt Eileen, but we had left her without a vehicle. Now that Luke was getting sick, this was a problem. There is nurse practitioner clinic in Harrisville, but it’s closed on Friday. Once we were released from UMMC (which we hadn’t been) we had a 45 minute drive back to Harrisville, then a 25 minute drive BACK to the nearest medical clinic. I contacted Brenda Sebren in Harrisville to see if someone could take Luke and Eileen to the Baptist Medical Clinic in Richland. I anticipated that we could meet them there about the time they arrived. Ray Sebren (Brenda’s son) drove them to Richland, accompanied by Brenda’s grandson Gabe. This gave Luke his favorite thing, an audience (in Gabe) for his extensive knowledge of video games and professional wrestling.

Meanwhile, back at UMMC, I got someone to watch me drain the fluid from Lynette’s lungs. We did so successfully, but Lynette suddenly got short of breath and panicky. This was new. They gave her oxygen, while a nurse tried to be calming. Eventually she settled down and her oxygen saturation on room air was acceptable. The nurse advised us: “If this (the shortness of breath) happens again do NOT come to the UMMC Emergency Room.” The UMMC ED is the state’s only Level 1 Trauma Center and the default primary care provider for the Jackson area’s uninsured. Shortness of breath might not receive the rapid response needed. We took this advice to heart.

We did, in fact, meet Eileen and Luke at the Baptist Medical Clinic. I went in with him, while Lynette waited in the car with Eileen. This kept her both away from any germs in the clinic, plus kept her in the place where she could have the car air conditioner blowing on her.

Things settled down. Luke got both an antibiotic and decadron shot for an upper respiratory infection and we filled a prescription for other meds. We finally decided to have diner at Bravo, a restaurant where Lynette and I had last eaten for her 50th birthday in 2010. Our server got a picture of the four of us there. I treasure it as a picture of “Our last good night.”

Eileen left on that Saturday morning. Both Lynette and Luke seemed to have stabilized. Lynette felt well enough on Sunday, November 19 to drive herself to Rexford and preach the morning worship service. One of the Rexford members was scheduled for Coronary Artery Bypass surgery on Monday, November 20. He implored Lynette NOT to come in person, though she was most inclined to do. She reluctantly agreed to follow him by phone instead.