A Letter to the Director of Nursing

In honor of Nurses' Appreciation Week this week, I am posting a letter that I recently sent to the Director of Nursing at the hospital where my dad was treated in hopes that she is able to use the information I provided to recognize three nurses at that facility who provided truly extraordinary care during my dad's illness.

Dear [Director of Nursing],

I am writing to let you know about three nurses who provided outstanding care for my father, William L. Bullard, when he was a patient on the oncology floor in December of 2010.

My dad was initially hospitalized at Centennial just a few days short of his 67^th birthday on October 23, 2010, when he was transported there due to disorientation experienced on a ten-mile run.  An MRI showed a large mass in his brain that was later revealed to be Glioblastoma Multiforme, which as you know is Stage IV brain cancer. He had surgery and spent a few days in the Neuro-ICU and then a few more on the Neuro floor, and, although in both cases the nursing care was adequate, my family was glad when he was discharged after a total of ten days there. 

A few weeks later, on December 21, 2010, my dad was re-admitted to Centennial, and again in the ER the nursing care was fair, in most cases competent but not outstanding by any stretch.  When he was moved up to the Oncology floor, though, we were lucky enough to have our case assigned that night to a nurse named Meredith who provided exceptional care for Dad and who took both Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor over the next several days.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember. To us, Dad wasn’t a terminally-ill cancer patient; he our champion, an Ironman athlete, brilliant in thinking and indomitable in physical presence.  Very unfortunately, though, during the course of his illness, the majority of the health care workers with whom we came into contact appeared to see him just as a patient, and honestly it seemed like some of them didn’t really see him at all.

My dad was very sick and as a result was intermittently confused and distressed while we were in the hospital that second time, but he took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Nurse Meredith, aka “Angie”, was with us again for the 7 p.m. to 7 a.m. night shift that second night we were on the Oncology floor (12/22/10).  My sister and I stayed overnight with Dad and were impressed by not just Meredith’s competence but also by her compassion and her coolness under pressure, particularly when things started spiraling out of control for my dad late that night.  For no apparent reason, his heart rate shot up and he started having trouble breathing; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Dad’s heart rate continued to climb, and then he started saying he was freezing and then making comments that we didn’t quite understand, with lots of talk about death which shook my sister and me to the very core.  Despite the temperature of the room being warm and several blankets being placed over Dad in the bed, his teeth were chattering so much that we had to strain to understand him. 

My sister and I were terrified; we agreed later that it was the first time we thought Dad was actually going to die right in front of us, and we felt completely helpless.  Meredith stayed right with us and was such a calming force for Dad and for us.  At one point, the three of us were almost lying on top of him trying to warm him up and to calm him down.  After more than an hour, we realized that neither verbal nor physical comfort measures were going to be effective in battling the panic and the terror Dad was experiencing, and Meredith raced to get a sedative for Dad, which, five minutes later, had him resting soundly.  

Looking back, I’m not sure that my dad would have made it through that night without Meredith, and certainly my sister and I would have been much more at a loss without her expertise and, more importantly, without her kindness, which is something that stays with us to this day.

Although Dad ended up being stabilized for the night, unfortunately his condition continued to deteriorate, and, on Christmas Eve, he was transferred to the ICU – actually, due to hospital staffing shortages during the holidays, to the CCU.  There we dealt with many challenging issues, some involving nursing and some not, but suffice to say our stay there was a terrible experience overall, and we were very glad when Dad was moved back to the Oncology floor two days after Christmas – and even happier when we realized that we had once again been lucky enough to be assigned to an exceptional nurse, this time in the form of an RN named Dave.  Again due to staffing problems that we didn't really undersand, my dad was placed on a unit that didn't really fit with his diagnosis; this time it was the Bone Marrow Transplant unit on the Oncology floor.  

My dad had been struggling to take in enough calories for quite some time; he often reported feeling “zero hungry” or, even worse, feeling nauseous at just the idea of food. When we clued Dave into the fact that we were very concerned about Dad’s caloric intake, Dave offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.  Unlike our days in the CCU, with Dave it felt like we were no longer having to beg for what Dad needed; in fact, it seemed like Dave somehow anticipated not just Dad’s physical needs but also many of his emotional ones as well.

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from a bed sore on his lower back had continued to plague Dad.  Dave was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

Tag-teaming with Day Shift Dave, as we called him, was Night Shift Jim, another nurse in whose care we were grateful to have Dad placed.  Like Dave, Jim was very patient in teaching us about how to address Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

After almost two weeks of seeing Dad in a downward spiral, one morning I stood in the hallway outside of Dad’s room crying, and Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist during which I had asked how we would know when it was time to consider hospice – and the oncologist had essentially said “Not yet,” which I felt like was not an answer to my question.  “He doesn’t see what we see,” Dave said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

Later that day, my sister and I approached Dave to talked more about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  I'm sure he realized the ridiculousness of my request - as if shielding Dad from knowing about hospice could save him from what I really wanted to protect him from - but he respected my grief process and also, I guess, my need to try to control the very few things that I possibly could at that point, and I was very grateful for that.

While Dad slept that night, my sisters and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and even helped us to make a list of supplies that we would need to have on hand at home, again honoring our desire to feel that we had some kind of command over an out-of-control situation.  He sang the praises of hospice care and of the support they had to offer, which we soon learned to be the absolute truth. 

Looking back at my dad’s last few days in the hospital, which turned out to be just about a week before he died, I am not sure my family would have decided to take Dad home on hospice there at the end without the input and the support we received from both Jim and Dave.  For my family and certainly for my dad, as my mom and my sisters and I have discussed many times over the past couple of years, while changing the setting in which Dad spend his last few days probably wouldn’t have lengthened his life any, having him at the hospital instead of in the comfort of my parents' home certainly would have changed the quality of that time for him – and for us, and that is why we will forever be grateful for the way things happened there at the end of Dad's hospital stay.

I can’t count how many times over the past couple of years I have intended to try to get a message to these three nurses to thank them.  I hope they are still with Centennial and that the details I have provided will help you to identify them so that they can be recognized, although appreciation in any form seems inadequate given the gift with which they left my family through the truly exceptional care they provided during the most difficult time of our lives. 

In case this does make it to Meredith, to Jim, and to Dave, though, here’s my message: thank you, and may your kindness and your skill be recognized and rewarded; my family will never forget you.

Very sincerely,

Stephanie Bullard Lancaster

Birth Story

There aren't many days in a person's life that one knows will always be one of the best, one of the most memorable, one of the coolest days ever, but I am lucky enough to have had one of those days recently, thanks for my sister Nancy and her husband David, who not only brought the newest member into our family but were gracious enough to include many of us in one of the most awe-inspiring things I've ever been a part of. 

Around 8:00 in the morning on Sunday, March 24, my cell phone rang, and I saw on Caller ID that it was my brother-in-law calling.  Given that Nancy's due date was two days before, I got butterflies in my stomach before I even answered the phone.  "David?" I said, instead of even saying hello; I wanted to hear him say everything was ok before I would let myself be overtaken by joy and excitement.

"She's having contractions, about 9 minutes apart," he said. "It's been going on for a few hours, and they're getting closer together." 

"Are y'all ok?" I asked anxiously, still needing that reassurance.

"Yes, we're good, just wanted you to know what's going on," he said.  I could hardly contain myself as I finished talking to him and then dialed my sister Jennifer's phone number to give her the good news.  I talked to her for a couple of minutes and then we hung up so she could call the airline to book the first flight from L.A. to Nashville.  I called our mom, and then I hustled upstairs at my house to get ready to go.  I had gone to Nashville two days earlier to pick up my oldest daughter, who had taken a flight in from college to start her spring break.  We'd spent the night and had driven home the next morning, less than 24 hours before David had called me.  Thinking that Nancy might go into labor while I'd been there then, I'd packed my suitcase as if I were planning to stay for several days instead of just one night; my suitcase, in fact, was still packed, and so I quickly woke up my husband and my daughters to tell them what was going on and then I grabbed my bag and hit the road.

David called again when I was about 30 minutes away from my house to let me know that they were at the hospital and that Nancy was already at 4 cm.  "I'm on my way!" I told him.  I called Jennifer again and got her flight information; her flight was scheduled to arrive in Nashville at 5:45 p.m. that afternoon.  She said she was going to get WiFi on the plane so she could stay up-to-date about what was going on during the four-hour long flight.  "I hope I make it in time to be there when the baby is born!" she said, and I hoped I was right when I told her I thought she would.  As I drove, several group text messages were exchanged by others in the family, all excited and wanting an update as soon as possible.  The weather was stormy, but I made it in decent time to the hospital, parked, and went in through the front door.  I stopped at the Information Desk and got directions to the maternity ward.  I texted David and he met me at the nurses' station, where I was given a Visitor's bracelet so that I would be admitted to the delivery room area.

Nancy looked relaxed and happy when I got there; our mom was there with them and everything seemed to be going smoothly.  About 1:45 p.m., the nurse and the midwife came in and examined Nancy; she was already at 9 cm, but the midwife said it would probably at least a couple more hours before the baby had dropped enough to be delivered.  The midwife told us she would come back in 2-3 hours to see how Nancy was doing.

Lots of text messages amongst the group of Bullard family members were sent back and forth; everyone was so excited and anxious for the baby to be born.  We were all really hoping that Jennifer would make it to the hospital before the baby was born, but with the latest news it seemed possible that she might not be able to.  My mom asked my aunt Ellen to pick up Jennifer from the airport and bring her straight to the hospital; we knew that even if the baby was born before her flight had landed, Jennifer would want to get to the hospital as quickly as possible.  My aunt said she would get Jennifer to us as soon as she could, and I emailed exact directions to her so she would know which entrance to use and how to get to the room once she was inside the hospital.  

As we waited, Mom French-braided Nancy's hair and we chatted excitedly; what was going on almost felt more like a dream than reality.  About 2:15, Nancy was having some problems with itching, a common side effect of an epidural, and so the nurse gave her medicine for that.  Nancy told the nurse that she really hoped our other sister could get there in time, and the nurse said she thought there was still a good chance that would be able to happen.  Nancy said she wanted all of us to stay in the delivery room while the baby was born, and we were thrilled.  As I was finding out, even though I had had two children of my own, it's very different to witness a birth than it is to give birth.

Meanwhile, Jennifer emailed from the plane that her flight was supposed to be landing 20 minutes early.  We passed the new arrival time on to my aunt and crossed our fingers that the extra time would up the odds for Jennifer to be there for the birth.  Nancy's nurse, who was pregnant herself and who like Nancy had opted not to find out her baby's gender ahead of time, seemed to be deliberately taking her time with some things, and when she stepped out of the room we agreed that we thought she was doing everything she could to make Nancy's wish for Jennifer to be there come true.

About 4:15, the midwife did an exam and told us that Nancy was at 10 cm but that the baby still needed to drop a little more, and she added that she thought they should also wait a little longer for the epidural to wear off a little so Nancy would have better control during the delivery.  "Let's think about having you start to push about 5:00," she said.  "Fine with me!" Nancy told her, and we all made yet another silent wish that the baby would be able to wait until Jennifer was there, too.

David's mom Linda got there about that time.  We updated Jennifer, who said she was ready to run to meet our aunt as soon as the plane landed.

At a few minutes after 5:00, the midwife, her assistant, and Nancy's nurse came back in, and the midwife said, "Let's have a baby!"  It took a few minutes for them to get things set up, and then the nurse told Nancy it was time to start pushing.  I had been pacing around a bit prior to that time, full of lots of nervous energy, and at one point the nurse asked me if I wanted something to do.  "Yes!" I said, and she told me to stand at one of Nancy's legs and to count to ten each time she gave me the heads-up that Nancy was having a contractions and should start pushing.  I happily accepted my position, and my mom and David stood on either side of Nancy at the head of the bed while Linda stood to the side.  Every couple of minutes, the nurse instructed Nancy to push, and I counted to ten at what I thought was a medium-speed pace, during which time Nancy pushed.  (As I told Nancy later, I reasoned that if I counted at too fast a pace little to no progress woud be made in the delivery during each contraction - but that too slow of a pace would be unreasonable for Nancy to keep up with.)  We repeated that three times per cycle, and then Nancy got to take a very short break between contractions.  The midwife said she thought the pushing phase would take around an hour, and so I quickly reported that news to Jennifer via email in between contractions.  Jennifer responded that her plane was about the descend; she said she still hoped to make it in time but that of course she just wanted Nancy and the baby to be ok.  Again, I hoped I was right as I told her I thought she would make it in time. 

Nancy continued to push during contractions; I will never forget how awe-inspiring it was when the very top of the baby's head became visible.  "You've got this," I told Nancy at the start of the next contraction, and she looked me in the eye and then we started the cycle again, counting and pushing.  At 5:32, Jennifer texted that she was in Ellen's car and they were 10 minutes away from the hospital.  The two minutes between contractions during which Nancy could take a break from pushing seemed to go by faster and faster; the excitement and the awe in the room was almost palpable.  "Oh my god, this is so awesome," I must have said a dozen times during the next half hour or so; I felt like even that wasn't adequate in describing my emotions.

Jennifer texted to let us know she was one minute from the hospital.  A few minutes later, Linda volunteered to run to the nurses' station to give Jennifer the Visitor's bracelet, but, before she had had a chance to do so, Jennifer burst into the room.  She later told us that, as she rounded the corner to the nurses' station running (literally running - just so you have an accurate picture in your head here.), a nurse yelled, "ARE YOU THE SISTER?" and when she said "YES!!" the entire staff there, all of who had undoubtedly heard that Nancy wanted her to make it in time to deliver the baby, cheered and waved her into the restricted delivery room area, towards the room where we were. 

She was so happy; we all were so happy.  She all but floated over to Nancy to kiss and hug her; there wasn't a dry eye in the room.  A second later the nurse gave us the signal, and the counting and pushing started again.  The nurse told us it wouldn't be long, and the midwife asked if anyone in the room wanted to call out the gender of the baby after the birth.  "I'll do it!" David said excitedly.  By this time, Mom was at one of Nancy's legs and I was at the other, and so Jennifer squeezed in at Nancy's shoulder, opposite David, and we all in complete awe as, at 6:04 p.m., only nine minutes after Jennifer had gotten there, the newest member of our family was born.  

The midwife placed the baby onto Nancy's chest, as we all looked on in wonder, and then David announced, "It's a boy!"  Happy, grateful tears flowed, and Nancy looked down at her son and said, "Well, hello, baby!"  After a few more minutes, she said to him, "Now you need a name!"  After a brief huddle with David, the new daddy announced, "Meet Crosby Bullard Owens."  

As another round of smiles and tears went around the room, it occurred to me that, although it often takes a village to raise a child, sometimes a child can lift the spirits of an entire village.  

Welcome, Crosby; we're so glad you're here.

If the video doesn't automatically load in the box above, CLICK HERE TO WATCH A VIDEO ABOUT HOW CROSBY JOINED OUR FAMILY.

Not Knowing, Part 1

One of the things that my dad worried about the most when he was sick and even before then was his mom, who had been living alone in a small town in southern Alabama until the age of 87, when she suffered a stroke.

Kind of like my dad, she lost her independence in the blink of an eye, never to regain it, even though we had hopes that she would, at least to some extent.  Kind of like my dad, she was in very good shape physically and mentally, until her illness struck.  But unlike my dad, in addition to her physical skills, her cognitive abilities also were severely affected as a result of the stroke, and she did not have anyone in her area to take the kind of care of her that was required after that or the resources to have it provided in her home.  And so, as her hospital stay after the stroke was coming to an end, a skilled nursing facility was strongly recommended by the medical staff, and my parents decided to move her to one that was close to their house, one state over from hers.  

The downside was that the move disoriented her more and that, since it wasn't feasible for her friends from her hometown to visit her several hours from her hometown, she ended up being pretty isolated there, at least from people who had been involved in her life as it was before she got sick.  The upside was that my parents were able to check in on her several times a week and to make sure she was getting good care, and the rest of us were able to see her too whenever we were in town.  After the initial landslide loss of function, her memory and her physical status continued to deteriorate, a little at a time.  Eventually she was diagnosed with Alzheimer's Disease and she wasn't even consistent in recognizing those of us she had known for all of our lives, but she always recognized her son, my dad.  

Grandmom's first Christmas in the nursing home

Dad and I discussed many times over the years how tough it was to see Grandmom be so changed, so dependent.  She had always been a bold woman who strived to do things for herself and to do her part in making the world a better place.  All her life, she had lived on a fixed income; she did not have fancy things or take fancy trips, but she was grateful and generous and happy all the same.  Before she got sick, at the beginning of every year, she wrote out a detailed budget for herself for the upcoming year and mailed it to my dad.  The few times I happened to see what she'd written, I was flabbergasted at how specific it was and at my grandmother's frugality, and I was amazed that despite the limits of her finances she still committed to tithing to her church year after year.  She was not what one would call a Southern belle; rather, she was much more of an activist and a liberal-thinker for her time who valued individual rights and freedom for all.  

QUITE THE DAREDEVIL IN YEARS PAST:  With her younger brother Freddie, in Daytona Beach, FL ...

... and riding the bull at Gilley's

When Grandmom first got to the nursing home, she needed supervision around the clock and help with some things, but there were some things about her personality that were still the same.  She had always been a competitive person, and we saw shades of that come out in things she did there too; once when we visited her she told us she was the fastest person on a walker in the whole place.  Another time she proudly informed us that she had won the Bingo game there the day before, and she showed us a ladybug broach that she'd won for proof.  She was always so grateful for visitors, even as she became unclear on exactly who we all were, and she especially lit up whenever she saw my dad.

About a month before Dad was diagnosed with cancer, he and my mom sat down with Grandmom's doctor to discuss her steadily declining condition.  She had become completely dependent on others for everything, including feeding herself, and had been having some trouble with swallowing that seemed to indicate that she had had one or more mini-strokes that were hastening her decline.  Because of the swallowing difficulties, she was at risk for pneumonia and she was also having bouts of depression and anxiety, even though she did not seem to be aware of where she was or what was going on around her most of the time.  The physician recommended that my dad, who held Grandmom's medical power of attorney, enroll his mother in hospice care, which meant that she would continue to be cared for in the nursing home but that she would also be monitored by medical staff from a hospice agency who were specifically trained in end-of-life comfort care.  Wanting the best possible care for his mom, Dad signed the papers with a heavy heart; he'd committed to providing for and to looking after his mom years ago and felt in his heart that this was the best choice for her, as did we.

Worrying about her, her prognosis, and her comfort continued to weigh heavily on my dad in the days ahead; in fact, the last text message I ever got from him, which was just before he was diagnosed, was about his concerns for her.  He said he felt that she was declining so quickly that he didn't think she would survive even one month longer.  He said that he was worried about how "the girls" (meaning my children and my nieces, all of whom had visited Grandmom in the nursing home recently but had not seen her in her present condition) were taking the news of her decline; the whole situation was both difficult and sad for everyone involved.  Dad continued to visit his mom whenever he could, as did my mom; thinking about her was a part of their normal routine. 

Dad last visited him mom in the nursing home the day before he was rushed to the hospital and the mass in his head was discovered.  Suddenly, his own health was unstable and his life was at risk, weirdly and shockingly in some ways even more so than his 90 year-old mother.

In his typical way, though, he continued to worry about his responsibilities (his mom being one of the things topping his list) throughout the course of his illness, despite the fact that he was very sick himself.  During his first hospitalization and his stay at the rehab hospital, my sisters and I stood in for Dad, with at least one of us checking in on Grandmom every few days.  It was something we were glad to do; it felt like helping to take care of her was also helping to take care of him.

The first time we went to see her was the day after Dad's surgery.  My sister Jennifer and I went, while Mom and Nancy stayed at the hospital with Dad.  We were still reeling from having just been given the devastating diagnosis less than 24 hours before, and walking into Grandmom's room in the nursing home with a smile on our faces as if nothing was wrong was tough, to say the least. I couldn't shake the anguish that came from thinking about how much had changed in the six days it had been since Dad had last been there to visit his mom, but I felt in my heart that the news that Dad was so sick that he was unable to visit her would be more than Grandmom could (or should have to) handle at that point.  Neither of us is much of an actress, but, for Grandmom's sake and for Dad's, thankfully Jennifer and I pulled it off, and I was glad we were able to spare her the pain and fear that had taken root in the hearts of the rest of us who did know the truth.

After we told Grandmom goodbye in her room, we went to the nursing station down the hall to talk to the nurse who was taking care of her that day.  My mom had been doing Grandmom's laundry, collecting her dirty clothes weekly and then washing them and returning the clothes to her; however, given what we were faced with dealing with at that point, we decided to tell the staff that we wanted to have the laundry done at the facility until further notice.  "I'm Nellie's granddaughter," I said, "and I need to let you know that my dad is very sick and so neither he nor my mom will be able to visit her for awhile.  In fact, I need to give you my contact information and ask that you call me in case of emergency or if Grandmom needs anything."

Behind the desk, the nurse and several nursing assistants all stopped what they were doing and looked at me like I was speaking in tongues.  One of the CNA's leaned in and said, "Are you talking about that really nice bald-headed man that visits Miss Nellie all the time?"

"Yes, that's my dad," I told her.

"He's not sick," she asserted. "He was just up here to see her a few days ago, and he was smiling and joking around like he always does. He's the picture of good health!"

I could tell by the looks on the faces of everyone who was listening that they thought I was mistaken.  I understood their thought process; it was the same one that was going through my head repeatedly, fueling my shock and disbelief as well.  I gave them a brief run-down on what had happened: "He got sick while he was out running last Saturday and was taken to the hospital, where they found out he had a mass in his head.  Yesterday, he had surgery, and we found out that he has brain cancer."  There.  I said it, out loud, for the first time.  I felt sick to my stomach, until the voice in my head told me that it wasn't true, it couldn't be true.  

But it was.  In what would become a pattern from that moment forward, as soon as I delivered the awful news about my dad, I was put into a position of having to try to comfort the recipients of the news.  The second after the words left my mouth, I felt guilty about having had to deliver such a blow.  I've since learned that there is a term for something like this called  'vicarious traumatization,' which happens when a trauma specialist spends day after day being exposed to another's trauma.  But it was necessary that they knew, and the news was out.  "We do not want my grandmother to be told about my dad; please make a note in the chart and be sure everyone knows."  I stood there watching them try to keep their composure, until the nurse whom I had originally addressed stepped from around the desk and hugged me.  When she backed up, she had tears in her eyes, and she said, "I'm so sorry.  Please tell him and your mom that we will take extra good care of Miss Nellie."  I swallowed my own tears, thanked her, handed her a piece of paper with my contact information and instructions about having the laundry done for Grandmom on it, and backed away, before I lost it.  

Thinking back, I wonder if what I thought was true actually was:  did I insist that Grandmom not be told because it was better for her, or for us?  Was it too much for her to handle having to hear the news, or for me to have to tell her?  Was it taking the easy way out in avoiding having to deal with her emotions?  Was it protecting her or us?  I think it was for her sake, and for Dad's, but like a lot of things that went on during that time, I can't be sure.  Whether or not it was right to decide not to tell her that day and in the weeks that followed is something that I have questioned many times since then.  Regardless, though, with Grandmom's care squared away, Jennifer and I left the nursing home and headed back to the hospital.

In a life-is-weirder-than-fiction moment, later that day we discovered that Robbie, one of the nurses that was on Grandmom's hospice service, also worked at the hospital where Dad was.  She heard about Dad from the nurses at the nursing home and came to see Dad in the ICU.  (Maybe she was verifying the accuracy of what I'd said for the rest of the staff at Grandmom's facility.)  It seemed to confuse Dad at first when he saw her there, which I actually thought was a good sign, because it was kind of puzzling to have someone involved in Grandmom's care show up on the scene at the hospital where Dad was.  Robbie asked some questions about what had happened and about what was going on with Dad, and then she told us that she would check in on Grandmom more often than usual and would report back to my parents.  We were grateful to have the help; it eased our minds, especially Dad's, to know that Grandmom would be getting some extra attention and interaction.  

It's funny how what seems tragic can change in a single moment.  As things were, after the news of hospice care having become necessary for Grandmom, my family was grieving.  It seemed terrible to have had to watch her decline as she became more physically challenged and more disoriented.  And now, in the blink of an eye, the tragedy had changed, or maybe it had just widened; our perspective and possibly even our forbearance had been altered by Dad's sudden illness.  I think we just thought that was the one-two punch that we just had to get through, that if we could rally and shore up, things would get better.  We had to think that way; it was the only thing keeping us from falling apart.

To Be Continued ... Not Knowing, Part 2

Part 49 – Being Called Home

Continued from Part 48 

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.  It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.  – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.  

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.”  Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted.  My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.  

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone.  As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.  

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip.  Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all.  Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.  

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day.  I quickly hugged my mom and then went into my parents’ bedroom.  I saw my dad lying in the hospital bed – it looked like him, but it didn’t.  I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room.  A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”  I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were.  Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it.  That we had gotten here this fast, or at all.  That we weren’t going to be the ones to beat the odds.  As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital:  “It’s just too much.”  He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much.  What was happening was too much, and so was the grief, already.  Unimaginable, even in the moment.  All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing.  Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on.  For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.  

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.  Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties.  She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting.  She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did.  While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?”  I think I meant for Dad, but maybe I meant just in general.  I felt restless and so completely useless.  For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him. You have to tell him he can leave when he needs to.”  Oh, god, how I didn’t want to hear those words, but I knew she was right.  I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on.  Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands.  A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared.  Dad said he was so scared that he was going to be “counted with an odd number.”  He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost.  I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family.  I carefully put my head on his shoulder, and I said, “You can go.  But you have to come back to me!”  Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying.  “Oh, Dad,” I cried, “I know your body can’t do it anymore.  I know you are doing everything you can to stay here with us, but it’s ok if you can’t.  You’ve finished the race; you’ve done everything you needed to do, and we will be ok.”  He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too.  I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.  Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.  Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.  It didn’t seem possible, or real.

But it was real, and time was marching on.  The night-shift nurse came to replace Marilyn.  As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep.  It felt odd yet also comforting to have the night nurse watching over us.  Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing.  I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all.  It was the air, breathing, and being together with those we love that were paramount.  I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.  But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Up Next … Part 50 – Saying Goodbye

Part 48 - I’ll Love You Forever

Continued from Part 47

I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.  

I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things.  I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.

On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and my sister Nancy and her husband David there as the sun came up that day.  There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick.  It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him.  We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us.  Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained.  Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been.  Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling.  As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.

Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!”  Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.”  Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43^rd anniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.

David and Mom stayed with Dad while Nancy went to work that day.  I have no doubt that Nancy was operating on auto-pilot, as was I at my job.  It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.   

Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately.  Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.  

Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop.  Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts.  Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of.  I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do.  After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock.  “We often do that when a family feels they are in crisis,” he said.  

I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours.  “That would be great,” I told him, and I knew Mom and my siblings would agree.  We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad.  Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders.  It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.

To be continued ... Part 49 - Being Called Home