Documentation of a Death Well Done- The Final Week Begins

As I work mentally to try to formulate the right words to assign to the final days and moments that my father, Larry G. Sears, spent on this earth, I am reminding myself of the chronicled details in the texts I had sent to my brother Charles during those days. He was the only one of us who ultimately would find it impossible to make the trip to Arizona. Although he had multiple "last" phone calls with our dad over the course of his last weeks, he found it impossible to make it in time for one final handshake or hug. I knew this was excruciating for my brother for a variety of reasons and did my best to share the random details of each day with him. Dad knew the reasons why Charles was absent; he understood, and in fact, encouraged him not to come.

I LOVE reading through our conversations now. I am, in a strange way, thankful to have had the opportunity to text someone who wasn't there, knowing he desperately wanted to hold on to our dad too, for in that fact we now have a record of things, that have already slipped my memory, like:

"Earlier today I was feeding dad is vegetable soup. He took a small sip and asked me 'what kind is that, atomic bomb'?" The soup was a bit (temperature, not spicy) hot still when I put it to his lips... That was my cue to start tasting everything, like I used to with my children, before I fed him.

and,

"He's cute on his meds: He just told me he 'needs a little bit of Q'. I love him, he's so sweet. It's hard no to smile when he dreams out loud. We are doing our best to hide our giggles so he doesn't get frustrated though."

I did ask him what he meant by "a little bit of Q". Did he need us to be quiet? No. I went through every "Q word" I could think of; nothing resonated with him. I never did figure that out...

Also, although I didn't text this story to Charles, I found it in an archived text I sent to Deborah:

At one point he called Gary over to the bed and asked, "Did you finish that report on Harry Holt?" Gary said, "Um, no Dad I don't know who that is, but I don't write reports anymore."

Out of curiosity, I googled Harry Holt today. It's and interesting story; you can read about him here. Apparently, Dad wrote his own report about him in High School.  It's an interesting thing, this process of dying and the blending of past, present, and future realities...

Monday April 4th

This was Dad's long-anticipated day: My brother John would be arriving. After he learned that Dad had been hospitalized, John was easily prodded by Mom and I to take a few days off from a shoot he was on in Texas and book a ticket to come see us. It seemed reasonable, regardless of whether Dad was released within a few days or not. John's home is in New York, so a quick flight from Texas seemed practical.

By the time Monday dawned, Dad had been asking if he would "get to see John again" for days. Once John had booked his flight, Dad seemed to be satisfied for only a day or so. He kept asking "is John here yet?" He would check the clock or his watch every few hours and each time he woke up from a nap. We would repeatedly remind him "no Dad, it's only Thursday. He comes Monday, remember?"

It had occurred to Gary and I over the weekend that Dad, who is meticulous and a goal setter, had seemed to set a goal that would be accomplished with the arrival of John.

In addition to John's arrival, many of the other siblings had rallied to come. My youngest brother Brian and his wife, Hannah as well as my sister Susan, would be flying into Phoenix from Anchorage, Alaska on the same flight. They would land around the same time as John and would all share a rental car. The drive to Flagstaff was only a few hours from there.

Monday was also the day that initially the doctor had suggested he would release him to go home. How quickly things had changed. I couldn't imagine how we would get Dad into their little car now, or how he would survive the long drive home.

The morning started with a before-school phone call from my daughter Hannah, who had been afraid of "bothering him" the week before. She was worried about him and wanted to hear his voice for herself. Although he was tired, he had a very clear and normal conversation with her, only to be interrupted by shift change nursing activity. It would be the last time Hannah would get to hear her Grandpa's voice.

In the early afternoon my sister Deborah called. She had already been planning to bring her eldest son to Arizona on April 5th. She and her husband had just officially adopted him and he was about to graduate from high school. Deb was a little desperate to make up 18 years of experiences for him. He had never been to Arizona, or to the Grand Canyon. He hadn't had a grandpa like our dad either. She wanted him to spend some time over his spring break sitting, learning, being with a man like his new Grandpa Sears.

Deborah, being unable to change her tickets once Dad was hospitalized, was trying to rest in the hope that she would get there in time to see him at all; she was very aware that her vacation with her new son would not be what they had been planning for weeks.

When Deb called late Monday morning, she wanted me to relay a message: She was trying her hand at homemade cinnamon rolls and would be attempting to bring them to Arizona the following day. Cinnamon roll dates to Deb were like coffee dates to me. Dad grinned and nodded his approval. He then said, "well, I'll need to be nutritious and well done." He then patted my leg in the fatherly way every Sears kid knows very well. He didn't make verbal sense, but he was still behaving like himself and made total sense with his facial expressions and mannerisms. I showed him a texted photo of the rolls she was making, which he approved of. "Oh wow! I might be able to wait for those."

Later, in the early afternoon, Dad woke up from a nap and gazed at each of us surrounding his bed. There had been no less than 7-9 visitors in and out of his room most of each day since people had starting arriving. He seemed mildly panicked, "where's my sister?" I had been standing in front of his sister Charlene, so I stepped aside and said "she's still here, behind me". He stared dead-on at her, pointed, and said sternly, "my snake is bigger than yours." Charlene was a little dumbfounded. "Okay Larry," she replied. She had no idea what that meant. We all giggled and wondered at the dreams he must be having. Later conversation with his other sister revealed that he was making reference to a snake catching contest they had between the two of them for a summer. The longest snake always won and Dad wasn't about to go out on a loss...

In late-afternoon our Hawaiian transporter friend came to take Dad in for another the installation of his lung drain. He had already donated more than a gallon of fluid in procedures meant to temporarily offer relief for the building fluid, yet lab results from earlier tests had found no cancer cells. At this point in his hospital treatments, Dad had completed the heavy duty IV antibiotics for his pneumonia and early hopes that cancer wasn't the issue causing fluid build-up had completely faded. Even without the lab work to prove it, there was no question: prostate cancer that was metastatic to his lymphatic system and had fully engulfed his entire skeleton, was now making a final home on the outer lining of his lungs.

While Dad was in surgery, our entire family gathered in the nearest waiting area. My grandmother, who is 87 years old and a professional worrier, was remarkably quiet. Her son Kevin, his wife Danita,  Aunt Charlene, Gary, Daniel, Mom and I watched down the hall for the doctor, while checking our phones for news of the arrival of the car-load of siblings on their way up from Phoenix. Finally, John, Brian, Hannah and Susan joined us.

While we waited I noticed Yolanda, the nurse who had done the other lung drain procedures with the radiologist, walking towards us. She smiled with recognition at me and asked if we needed anything. We needed tissues. Tears had finally caught up to all of us. She quickly complied and then went on her way to her next patient. Then, another hospital staff member passing by, noted that we were several chairs short. No problem, they quickly and silently placed enough for each of us to sit. Again, I cannot say enough about how the FMC staff went above and beyond in every way for our family. We cried and sat waiting, thanking each other for being there. I have never been more proud of our family, all three generations. We experienced a nearly supernatural bonding during these precious days...

Dad was out of the procedure and quickly returned to his room on the third floor of Humphrey's Tower. We were told to expect him to wake up in about an hour. An hour came, then two, then more... He just wasn't waking up. We stayed by his bed, talking, crying, pleading with him to just wake up once to see the carful of kids that had just arrived. John reminded him multiple times that he had heard he needed to talk to him...

Gary and I made our way for the four millionth time to the nurses' coffee station, where we grabbed a few minutes to anchor ourselves to our new reality. Dad might not wake up. He had set a goal, and now, John was there. The conversation may not have been as important to Dad as meeting his goal was. We decided then that if Dad were to wake up, it was essential that each family member be given five minutes of time alone with him. The group time was fun, but the truth was clear, these would be our final conversations with him and some of us had sensitive things to say or hear.

When we got back to the room with our coffee, we became aware that Dad seemed to be snoring. This was a good sign in my opinion; it seemed more like a natural sleep than a medication induced sleep. We discovered that if Mom would call "Larry" as though something was urgent, he would try to open his eyes. What a sweet relief! We all took turns saying his name. It worked every time. "Dad" was not effective, but "Larry" was. I am so thankful I videoed a few of these moments. Ugh, I miss that man...

Because Gary and I had been there all week during the overnight hours and had multiple one-on-one conversations, we pushed for everyone, including Dad's absent sister, my sister, brother, sister-in-law, husband, and a few of the grandkids, to have five minutes of time face to face or via phone. Fifteen or twenty people times five minutes each, absolutely wiped him out. Tuesday would bring more visitors and hopefully more time with our hero. Gary and I were positively emotionally drained as we settled into our separate miserable chairs on opposite sides of Dad's bed. It would be another long night of monitoring pain management and babysitting the coffeepot...

Brian and Hannah Sears

Mom, John, Susan, Hannah, Daniel waiting for Dad to wake up post-procedure.

John requesting Dad wake up for their much anticipated conversation...

Susan giving Dad a hello kiss.

Tuesday, April 5th

Although everyone had been looking forward to seeing Dad with his eyes open post-procedure, travel and emotional stress had made the $54/night room at the Quality Inn feel like a palace for most of the family sometime after midnight. As Monday eased into Tuesday, it was clear we had worn the man out five minutes at a time, so Gary and I began our Tuesday anchoring ourselves on either side of the bed in those miserable hospital recliners hoping for a few minutes of shift sleep, one of us at a time.

About the time the sun came up, Dad's flip phone started buzzing on his bedside table. He was alert enough to know it was for him and tried to reach for it. In Dad's healthier days, it was his joke to announce whenever his phone would ring in its holster on his hip, "I'll get it, it's probably for me." I could imagine his little joke that morning too. Because he was slow moving, I answered the phone for him so it wouldn't be sent to voicemail. It was my daughter Rose. She had been in bed the night before when I called my husband to give him his five minutes alone, and she was worried she would miss him forever.

During this phone call, which was on speaker because Dad was too weak to hold the phone, Dad was working hard to participate. Unlike the morning before, on his call with Hannah, Dad was a little confused and extremely weak. "Is this the same Rose I'm thinking of?" She said, "yes, Grandpa, this is Rose." She asked normal questions about his well-being that Dad had a difficult time focusing on and responding too. 

Finally Grandma chimed in: "Rose, your grandfather is in danger of falling asleep, if you have something you'd like to tell him you should do it now." 

Rose said, "okay Grandpa, I just want you to know I love you VERY much."

Dad, with strength in his voice, and conviction as strong as ever, replied, "Well, I love you too Rose." Rose later commented, "I love that I got to hear that again. He said it like he meant it. He always said it in a way that I could believe him."

I took the call with Rose out into the hallway to finish checking in on her day and life. When I returned to the room Dad was asleep, but Mom was giggling. "Do you know that I really messed up?"

"How's that?" I asked. 

"Your father asked if he was in danger after you left. I was confused, but then he told me 'they keep saying I'm in danger of falling asleep; is it bad for me to sleep?'"

She reassured him that he'd be okay to nap and Mom and I found relief in our giggles. Dad was becoming very childlike and innocent in some ways. It was both adorable and sad.

After that Tuesday morning nap, Dad woke up and talked about eating a banana. Mom and I both had one, so we each offered them to him. He said "okay, but I'm going to need a lot more information before I actually take a bite." The goofiness bantered back and forth for a minute, then Dad said "banana, banana" in the same rhyming voice you used to say "Hannah, banana" when she was a toddler. He kept repeating himself and laughing while he held is banana. Then he stopped and said, "did we ever figure out why she called?" Ohhhhhhhh, it was sweet and devastating. His days were blending together and he was melding the conversations with Rose and Hannah into the same memory. I LOVE how my dad had turned into a gushy grandpa the moment his first granddaughter was born. The grandsons were, and are, all very special, but those girls had my dad wrapped tightly around their fingers, whether they were a day old or eleven years old when they finally met. I hate that he won't get to see them graduate, marry and become mothers.

Medically speaking, while the medications and anesthesia from the day before played a role in his emotional state and confusion immediately following the procedure, the palliative care doctor informed me that his body was producing less urine than before. This meant that he was also starting to become toxic, which was now the cause of his confusion. Things were starting to shut down and his body was starting to swell.

By mid-day he started tugging on his hospital bracelet, which I was alarmed to see had started to become embedded in his wrist. Just hours before it had been loose, now getting scissors under it to cut it off was a challenge. I chose to remove his watch as well. The deep groove it left on his arm did not disappear for hours. 

We took off his wedding ring. This was the first time since June 26th, 1971, that his left hand's ring finger was empty. Forty Five years is a long time and it was exceedingly important to him that, that ring never come off. It was a blessing that he never noticed it missing, unlike his watch, which he became very upset about.

Deborah and her son arrived in the late afternoon. By the time she texted that she was less than an hour away, I wasn't convinced that Dad would still be with us. I told her to HURRY. The afternoon was a difficult one for those of us watching. Dad was very clearly experiencing visions of some kind. They weren't dreams, because he was interacting with me at the same time he was interacting on the other side. When he would be fully present in our realm, he would try to talk about "our trip" as though I was with him there. He was overwhelmed with being unable to find words to explain what he wanted me to know. This "trip" came up multiple times in conversations throughout the day. He kept insisting that I should remember, "yeah, you know, remember how they kept turning out the lights on the other end?"

I tried to confirm with him that he was referring to going under anesthesia. I reminded him I was in the room yesterday when they were about to put him to sleep. "No, that's not it, because they left these lights on here and turned out the ones on the other side." He was insistent. He then transitioned his questioning to be along the lines of "time". "What time is it? Is it time? Will you tell me when it's time?" 

He would be desperate to get his watch back from me in these moments. It was hard for me to resist his pleading blue eyes and the desperation in his voice. I reassured him, "I'm not leaving you and I'm going to keep your watch right here. You can look at it anytime, but you cannot wear it because it is hurting you."

Our mom was having a very difficult time removing herself emotionally from the decision-making regarding home hospice care, a hospice center, etc. She, understandably, wanted to be HOME and back to normal, with her husband and without the invasive process of dying and medications, and foley catheters. She invited Gary and I to spearhead a conversation with our siblings and the other present family members. She would trust us to do what was best for her as well as for him. The majority of the day for my siblings was spent researching, touring and discussing facilities and options. We left no stone unturned and referred frequently to conversations both Gary and I had with him before he started losing consciousness and clarity.

By the end of the day on Tuesday, the decision had been made. Dad would be transferring from hospital care at Flagstaff Medical Center to hospice care at the Valley View Care center in Cottonwood, Arizona. The transfer would take place on Wednesday, April 6th- if Dad survived the night...

John serving Mom with one of many back rubs while she prayed over Dad.

Dad was happy to be able to sit in the skybridge for an hour or more on more on Tuesday. He was able to see Humphrey's Peak from this vantage point.

Brian and I greatly lacking sleep. We all still had each other- oh, and coffee. We had coffee.

I sat on the side of Dad's bed to free up a chair for a visitor. Dad seemed to be sleeping, but he was just listening with his eyes closed... He grabbed me for a side hug and wouldn't let go. His grip was still strong enough for me to comply.

My hero brother, Gary, was diligent to carry out most of the "business" work & planning required during the entire process. 

My brother Daniel was able to join us for a "long weekend". His presence is always strong, silent and comforting.

Brian and the every present cup of caffeine.

Susan hadn't been to Arizona in nearly ten years. What a blessing that her husband was able to hold down the fort for her to be there for Dad's final days.

John snagged a few days away from his job in Texas to be at Dad's side. He never had "the conversation" Dad had eluded to, but he was able to be with him while he was awake and alert. Dad lacked strength and clarity to say everything he was formulating for each of us...

Mom updating their friends via text and receiving much love and support in return.

Mom, a diligent intercessor.

The men assisting Dad's nurse, Andrew, with a transfer from bed to his recliner for a trip to the skybridge. Dad felt more comfortable with a "strapping male nurse" as he got weaker and heavier. He was afraid he'd "break one of those tiny female nurses." He was SO SWEET to that staff, even on the worst of days.

Grandma and her niece enjoying time on the skybridge.

My amazing sister in law, Hannah. She is such a precious mix of intelligence, compassion, comedic relief & spiritual strength.

My precious Aunt Charlene. I think I look most like her. 

Dad's sister-in-law, my Aunt Danita.

My Uncle Kevin.

The cannula drove him nuts! He was always pulling it off, especially towards the end. The Palliative Care team advised that it's all a part of the process of dying; we were not to fight him on it.

Mom and Dad's hand had held each other A LOT over 45 years.

Deborah arrived late afternoon on April 5th. There was some concern that she'd miss him.

What a sweet moment when he woke up and saw her! She lectured him for "making her worry so much". I have the beautiful moment on video.

My new nephew Chevvy didn't get the vacation with Grandma and Grandpa that they had planned for that week, but he experienced so much rich family love in those last few days. I hope he knows just how special he is to all of us.