The reality is, my dad has been gone for an eternity already. He has missed a thousand would-be phone calls from our home- both his grandchildren's initiation and mine. He hasn't heard me relay the detailed account of how God is answering his own specific, earnest, prayers for our family; he already, no doubt, knows the end of those stories- as we are only starting to watch them unfold...
I left you, the observer, at bedtime Tuesday, April 5th. Everyone was physically and emotionally bankrupt. Along with a few of the others, my youngest brother Brian and his wife, Hannah, had chosen to join Gary and I at the hospital, quietly gathering in the family waiting room; everyone else determined to embrace the exhaustion by putting themselves to bed at their hotel.
Dad had become less and less alert as evening settled into deep night. As the wee hours of Wednesday began, we were increasingly aware that things were changing, although I'm not sure any of us acknowledged the facts with each other for the first few hours. I had been blessed to be allowed the time and space to care for my father's physical needs for a little over a week; I recognized the therapeutic nature of having an element of "control" in a situation that was out of my control. As I watched the helplessness I still felt, mirrored on the faces of my siblings, I consciously began inviting them to help reposition and roll our dad every 15 or 20 minutes. As I was explaining our repositioning routine to Brian while he assisted me, I noticed Dad's skin had become wax-like and his limbs were heavier than ever. I kept my thoughts silent, wondering if Brian saw what I saw.
Now there was a group of us chatting quietly around Dad's bed. The emotional atmosphere in the room was peaceful and light, stitched together by exhaustion and a quiet, low, hum of seriousness. It was good to be together. By 2:30 a.m. the final carload of siblings left, electing to resign themselves to a few hours of sleep. Now I had the opportunity to check in with Gary about his observations... Because we had been there the longest, we had the benefit of seeing the patterns of energy and pain, highs and lows, develop.
Gary and I agreed, His breathing pattern had seemed to become increasingly erratic. We vigilantly watched each movement and every breath. We knew there would be no sleep for either of us. Shallow quick breaths were compensated for by deep, desperate, rattling breaths. Eventually Gary and I verbally acknowledged that things were most definitely changed in the hour since the family had left. I started thumbing through my contacts list. Who wanted to be called if this was really the end? Who would feel like I was being dramatic and be annoyed by being awakened mid-sleep? Who had expressed emotional inability to experience Dad in any state other than living? Should I awaken my 87 year old grandmother? Would crying "wolf" make everything harder for her, or for or my mother? I was exhausted and not confident in my assessment of my father's situation.
Gary was, again, invaluable to me. As a team we seemed less likely to fail our family. We made the decision to call siblings, we hovered over the idea of calling mom- we just weren't sure, and we decided against calling aunts, uncles and Grandma. Honestly, it looks so organized as I type it, but it felt far less so. I forgot the names of two of my siblings- or at least, how to look them up in my phone. There were missed calls, missed rides, mixed messages, people who tried, but couldn't, wake-up. It's any wonder anyone came, but before I knew it, my siblings and my mother were at our side as we prayed and cried and hovered over our father. A brother, who had initially elected not to be there at the end, found himself restless at the hotel and posted himself instead in the waiting room. Eventually, even he found a wall to lean on in Dad's room.
Now his breaths were nearly too shallow to see. Eight sets of peeled eyes watched for each slight movement of his chest. I started silently counting seconds between breaths, 28, 29, 30, 31.... then a shallow gasp started the count all over. Mom begged God, cried softly, told Dad to wake up. April 6th, I was convinced, would be the second date inscribed on his headstone... I sat on the filthy hospital floor, clung to familiar fatherly fingers, and fell apart. I could visualize my heart being shredded inside my chest. I ugly cried for what felt like months, unaware of anything except my own brokenness. Eventually I became numb, uninterested in everything and everyone around me. I found myself getting off the floor, searching for a seat, aware only of the feeling of total apathy. A million miles away I could still hear people talking, crying, begging next to me as they participated in this process with my father.
The phone rang. The pastor was returning my Mom's call. She had left him a message that "this is it". He wanted her to know that he and his wife were already in the car, on their way to Flagstaff. Mom hung up the phone and said, "Larry, Danny is on his way here". With that, Dad erupted into a sitting position, his eyes were huge. "I'm not dressed!" He shouted. I snapped back into action, numbness would have to wait. Dad was climbing out of bed. I was in awe at his strength! He hadn't been able to move his own legs to adjust himself for comfort's sake in days and now he thought he could walk?
Things were happening so fast. Everyone stood there in disbelief. He had been barely taken two slight breaths a minute for the last hour, but now he was demanding his pants and telling me to "bring the car around" so we could "load up". He jerked his nasal cannula off his face and refused to entertain our requests to re-establish his oxygen flow.
Mom had the sound of excitement in her voice, "ok Larry, I'll get you dressed, we can go home." Our mom was clinging to the hope that this was all a bad dream and the they would very soon awaken to a miraculous and complete healing. I could see that he was still incredibly frail and that nothing was healed. All I could visualize was him falling from the bed thereby shattering his femurs. I shot over to the bed and jammed my thumb into the call light to call for his nurse. I told her to bring at least two strong nurses to help us.
The sound in Dad's voice was desperate, angry, and scared. He kept saying, "I can't go like this, I'm naked. Don't you understand I'm embarrassed? Please help me get ready to go. I just want to at least wear pants, pleeeeeeaaaasse." None of us were moving fast enough for him and none of us knew what to do.
He had a determination I had not seen in years; it was a tone that was familiar to any one of his rebellious children who met their match with his much stronger, fatherly determination for respect and immediate obedience. The nurses arrived in the nick of time. I was on the wrong side of the bed, reaching across to try to block Dad from standing. I climbed across the bed and got in my dad's face. "YOU NEED TO STOP," I shouted. "Your legs are going to break and you need to sit down," I said in a calmer, but still-direct, voice. His blue eyes searched my face for understanding. "Don't you understand?" He cried desperately. "I can't go like this, they can't see me in a dress!" I wasn't sure who "they" was. Danny and his wife had been to the hospital several times and the hospital gown situation had not been a problem for Dad before. To me, it was obvious he was referring to a different "they".
Mom had found his underwear and asked the nurses to take out his catheter or to at least help her navigate the Foley so he could at least feel more secure in his underpants. One of the nurses then scooped him into the recliner chair on wheels. He instantly starting fighting to stand again. I jumped over equipment, bedding and people to take charge. Dad had told me days earlier that he needed me to make decisions for him, to not leave him. I held his face in my hands and placed mine inches away from his. We locked eyes and I got my "mom voice" out. "Dad, you told me I was in charge now. You told me you needed someone else to make decisions and to take care of you. You trusted me and you still do. I hear you saying you want to go, and we are going to, but you absolutely need to sit down now. You are not allowed to get up again. Your body cannot handle what you are trying to do and you are going to get really hurt. Now trust me and sit down." Whether it was my tone or the promise of "going", my words seemed to satisfy him and he reluctantly obeyed. I had quickly decided that taking him "on a trip" around the darkened halls of the hospital might make him feel as though he was being validated in his need to "go".
With traumatic fanfare, the ten of us wheeled him down to the closed skybridge. I know we woke up every patient on the floor with the commotion. As we left his room, I had no plan. I hoped I would be able to navigate this trauma and lead my parents well. It felt like the whole world was falling apart and nothing was rational any longer.
Dad's panic subsided only until we parked his chair on the skybridge. He responded as though we had scammed him as soon as the chair stopped rolling. "NO!" I'm supposed to be wearing my pants and I told you I need to GO. You need to understand I have to GO!!!" He was disgusted with us and desperately discouraged. We decided to try putting on his button shirt, the one he had worn when he checked into FMC a week and a half before. A brother and my Mom ran to get it while we tried to calm our father. As I crouched in front of his chair to try to reason with him again, he suddenly saw his watch on my wrist. He snatched my arm up and pulled off his watch. Before I could respond he shoved his swollen wrist through the band, snapping in into place. He gave me a defiant, satisfied look- as though he'd won a small battle. I knew the watch was going to hurt his swollen wrists, but I also knew not to fight that unnecessary battle. I'd wait and slip it off again after we got him back to bed. He stared at the watch for a few moments and then asked me to tell him again what time it was. I knew he didn't want the literal answer. "It's almost time Dad, you have to be patient. You have spent my entire life telling me to be patient; now it's your turn to wait."
A white undershirt and Dad's cranberry colored snap-button shirt were produced on the skybridge and within minutes his gown had been replaced by his own clothing. Mom asked him, "Larry could we please go back to the room and get you on your oxygen?" He nodded and settled back into his chair, ready for his "trip". I obliged, hoping that by the time we returned to his room, he'd be ready to let it all go. As we rounded the corner at the nurses station, just outside his room, he asked "did anyone ever find my fire pants?" He hadn't specifically requested "fire pants" before, he had only asked for "pants". I latched onto the distinction and promised that we'd look again. As we headed into his room, I looked over my shoulder and asked the group of siblings behind me, still in the hallway, if they still needed "Larry" on the fire. Deborah caught on: "Nope, the fire is out, besides I thought it was Larry's week off."
"Yeah Dad, the fire is ready for mop up already, your guys did a great job. They want you to take the week off" I told him.
He replied, "oh, good. Yeah, they are good guys aren't they? I'm glad they don't need me, I'm pretty tired."
We helped him back into bed. Knowing that there would be no way to safely remove his undershirt over his head, I asked the nurse for her medical shears and cut it off him. I then spent a few extra minutes tucking him in, stroking his cheeks, giving him a sip of water and, finally, removing his watch. He gave me a meaningful hug, which communicated complete dependance and trust. He was now peaceful and relaxed into a normal sleep with a normal breathing rhythm. A minute later he forced opened his eyes and looked at me with a grin, "what's going on here? Were you trying to pull something over on me or did I just have a dream?" "No Dad, you were pulling something over on us!" He laughed at my assertion and shook his head with a weak grin. "Alright" he said as he re-settled his head on the pillow. He was suddenly aware of each of us, acknowledging Deborah and Chevvy, nodding at me as I thanked him for listening to me and for trusting me. With my hand on his forehead, he drifted off to sleep. Gary reminded us, "Dad always said he'd be a firefighter until the day he died."
We all stayed for another hour to watch him sleep. The April 6th sun was just now rising and we had already been to hell and back. I was incredibly thankful that we had not called our Grandmother to the hospital in the middle of the night. However, as it turns out, when we relayed the nights events to her later that morning, she told us she had woken up suddenly just before 4:00 a.m. and paced her room. Whether it was a dream or a feeling, she knew something was wrong. For the remainder of the dark hours she obsessively checked her phone, waiting for my call. It seems like a mother always knows...
As it became clear that Dad's breathing would maintain a healthy rhythm for the morning, people headed back to the hotel for a shower or a few more hours of sleep. Because Daniel would be flying out of Flagstaff in a few hours- headed back to work on the East Coast, he chose to wait with me in Dad's room for Dr. Kennedy, our palliative care doctor, to do her morning rounds. She had already heard the report of the night's events from the night nurses at the shift change meeting. Daniel and I relayed our concerns in low whispers. Dr Kennedy was an amazing listener. She drew out every detail of events and emotions from each of us before she responded.
"What your father experienced this morning was very normal in the dying process. Some people seem to hover between life and death, aware that their body no longer serves a purpose for them and yet there is something beyond this world that they seem to want to experience. Often they struggle to physically exit their broken body, which in reality, sends adrenaline into their blood stream. Your father was trying to "go on his trip" by attempting to force his way out of himself. It's a "soul" separation he craves and is attempting. These types of moments will likely keep happening until his organs and body shut down completely. It is much more traumatic to watch for families than it seems to be for the patient. If this is simply too much for your mom or your family, I can prescribe an anti-anxiety medication which will alleviate your concerns of future episodes. However, if you feel like you have more to say to him, or if you aren't ready for him to stop attempting to communicate, I will hold off on the prescription. He isn't likely to be awake again once we administer the medication."
Daniel and I shifted our attention to another concern without making a decision on the anti-anxiety medication. It was difficult to tell if Dad had injured himself in his attempts, or if we had injured him in the dressing and undressing. I was increasingly stressed about keeping track of the pain medication and was even less confident that Dad would ever be able communicate his needs again. I reminded her that he doesn't ever want us to "max him out" with the narcotics. I would honor that until the very end, but I needed to know what would be appropriate to do now. We agreed to double his dose, which was still half as much as his "max". The doctor wrote the prescription in a way that it would not be optional, but a regularly scheduled dose that no one needed to babysit. What a relief! April 6th was day four for me without a bed and day three without a shower; I felt my mental competence dropping. I was fearful of failing Dad in such an important area.
Dr. Kennedy took several minutes to give Daniel and I some advice on how to support our mother during this time. She even told us about a store downtown that made custom blends of teas. While we were unable to find the time to go there before Daniel flew out, we appreciated her thoughtfulness and attention to every detail. After much consideration and discussion, my brother and I decided that the safest option for our father, and the least traumatic for our family, would be to sedate Dad with the anti-anxiety medication for the duration of his life. The first dose would be administered directly prior to his ambulance departure from Flagstaff Medical Center to make the transfer most comfortable. We knew that we had all had one or more "last conversations" and the legitimately coherent conversations had already naturally dwindled. Daniel then left the hospital to pack up his hotel room. I have always appreciated his low-key, common sense attitude. He always appears un-ruffled. I love these strong men leaders that I am blessed to have been raised around.
Now that the hospital's day shift was in full operation, the palliative care team went right to work organizing an ambulance transport. There had been some concern as to whether or not Dad would be too fragile to be transported to the hospice center in Cottonwood, and hour away. Dr. Kennedy wanted it to happen in the morning. Dad wouldn't be getting any healthier as the day progressed.
Things were a bustling blur. I tried to feed Dad breakfast, but he was uninterested. He nodded in agreement when we suggested he take another ride to the skybridge to spend time in the sun. Overnight a forest fire had started near Lake Mary. The thick mushroom cloud was visible from the skybridge and I was confident that Dad would be interested in watching it, especially considering his "fire pants" request only hours before.
As we settled him in his chair, positioning him in full view of the fire, he disinterestedly turned his head away. He was outright refusing to look at it despite our encouragement to do so! Instead he had chosen to gaze at Humphrey's Peak behind him. We laughed and repositioned his chair, his oxygen, his blankets. What a process! In typical Dad style, he immediately fell asleep. Our family lined the skybridge, each of us lost in our own thoughts. It was a comfortable silence as we watched a bustling hospital, a city unaware of our pain, a peaceful wilderness just a stone's throw away, a growing forest fire, our sleeping daddy, brother, son, grandpa, husband... There were coffee runs, phone calls from friends and grandkids and in-laws; even a friend of Dad's, who had just been checked into FMC because of an infected dog bite, stopped by the skybridge for one last visit. Dad slept through it all. Morning was turning into afternoon, yet Dad remained stable. Transport plans were moving forward.
After a couple of hours we decided to return Dad to his room. The staff had already started preparing for a new occupant to use the bed. The cafeteria brought lunch. We tried to send it back, knowing Dad was unlikely to ever have another meal. The compassionate kitchen worker encouraged Mom to eat it. It was a strange time. I suddenly felt like an outsider in the room that had been "home" to me for the last 8 days. I was afraid to touch the sheets or pillows, to use the freshly emptied trash can, or to walk on the just-mopped floor. Mom cleaned out the closet which had been shoved full of medical paperwork, Dad's cane, clothing, snacks, the photos grandma had brought... We were really leaving. It was the first time I've ever dreaded leaving a hospital. As we carried loads to the car and nibbled off of Dad's lunch tray, Daniel announced it was time for him to head to the airport. Almost simultaneously, the palliative care coordinator dropped in to let us know the ambulance was on its way. Dad was still un-stirring in his chair, wedged in by pillows and buried under blankets. His skin was starting to look strange again. Although he had yet to receive his anti-anxiety medication, it was clear he had naturally declined to a much less communicative state over night. I was relieved about our decision regarding the drug.
Daniel, needed the correct keys to a usable car. Wait, he needed a ride instead. Where was Gary? Would they be using one of Mom's cars? Daniel knew he still had things at the hotel on the opposite side of town. There were nurses present to finally administer the first of the anti-anxiety meds and another dose of the new pain meds. There was check-out paperwork being delivered and phone calls coming in. In the stress of the moment, Daniel rushed by our sleeping father, afraid of missing his flight and distracted by logistical things that needed to be lined out before he left. It would be the last time my brother would see his father...
Then ambulance crew was working to get my sleeping and newly sedated father from his recliner chair to the backboard and gurney. He let out a painful yell as they settled him on the gurney. It was the last sound he ever made and rings still in my ears. There was a rush to give our purses and odds and ends to my sisters as Mom and I followed Dad to the ambulance. They would have room for both of us. I was relieved to be able to continue to keep my word not to leave Dad until it was over.
Aside from his rhythmic breathing, Dad didn't move a muscle for the entire hour in the back of the ambulance. The EMT riding in the back with us asked a few questions about Dad's career and life, but chit chat was laborious for mom and I. A lump built in my chest and I no longer trusted my voice to respond. I stared at the waxy skin again developing on Dad's face and hands. Would he survive the trip? Maybe transport was a mistake. I was only comforted by the perfect rhythm of his breathing. What was mom thinking about? I didn't have the energy to ask. I took a few pictures and responded to a welfare check text from my sister. I sat in disbelief. How were we at this moment? I no longer felt anything. A heavy, soaking, numbness fully engulfed my being, inside and out.
We arrived at the hospice center in Cottonwood just after 2:00 p.m. Wednesday. We were immediately greeted by several of the staff members at the ambulance. Most of them were named Debbie or Debby or Debi. It seems like all the good people in my life have a name that sounds like that, I remember thinking... Somehow my body made it to his new room, at his new bedside. I was aware of nothing except my need for a change of clothes and a shower. Everything I had just been through for the last week and a half seemed like a waste of time. I had already been poured out and this process could take another week or more, they cautioned. I knew I didn't have the physical or emotional ability to keep my promise to my dad. I knew I'd "let him down" by leaving his side now that we were here and while I knew that no one else would hold that against me, I would know and hold it against me. I hated myself for being human and needing sleep. It had been four days since I had changed my clothing or slept more than sixty minutes in a row, sitting up in a chair. Although I knew enough to have grace for myself, it didn't stop my own internal, critical voice from mocking my deep longing for a shower. I felt selfish and foolish at the same time. I was cracking up inside, imploding, fully coming apart. I knew this only as a fact, not as an emotion. I felt like I was watching myself crash and burn from a front row seat.
The view from Dad's room at the hospice center; looking towards Sedona.
No sleep, no shower for days. It's good there are very few pictures.
Dad's last morning at FMC was spent sleeping in the sunny window.
Silence.
Dad kept wrestling with his clothing and oxygen. He just wanted to "go".
Transport to the gurney.
His final painful cry. Even his nurse cried as she hugged him goodbye.
The one hour ambulance ride.
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