A Year in Review: January 2023

I started 2023 in South Dakota; although, I wasn't supposed to be there. Not Jersey and I arrived in Miller in the late afternoon of December 27. We flew into Sioux Falls from Newark, New Jersey and rented a car to make the drive to Miller.

After hugs and greetings with my parents, we sat down around the dining room table. Dad said he had some bad news. Four days ago he'd been diagnosed with cirrhosis. He had an appointment with a hepatologist in Sioux Falls, but not for another month.

He and Mom had been to Aberdeen that morning for a procedure to drain 9 liters of fluid off his belly. Mom said he was "really sick" for the past few weeks. However, despite pain that doubled him over, he still drove to and from Aberdeen.

Dad said, "This isn't good, Mandy. The Wieseler girl looked so sad. Well, you know, I taught her in school. She said you might need a liver transplant."

I sucked in my breath, trying to process. Ok, so you'll have a liver transplant, I thought. Maybe I'm a match?

Dad hadn't drank in 8 years, and a CT from two years prior didn't show any liver damage. He looked really skinny, but otherwise normal. I wouldn't have known anything was wrong by looking at him.

"A liver transplant is no good, Mandy," Dad said, looking defiant and 100% himself.

He's still processing, I thought. Maybe he won't need a transplant. We'll know more after we talk to the liver doctor...I was in denial from the beginning.

I asked if they would have told me if I hadn't come home. "No," Mom said, "We wouldn't want you to worry."

Every day Dad got worse. He would come upstairs and hang out with us, but after a few minutes he went back to bed. He was nauseous. He had bad muscle cramps. He couldn't do his morning cleaning or go see Travis at the body shop. He'd say, "I thought I would feel better today."

On December 30, we drove to Huron to meet some family for lunch. Dad didn't get out of the car at the thrift stores. When we got to the Chinese buffet, he ate some food and visited like normal. He told his sister and my Grandpa about his diagnosis. He went outside for a cigarette. When he came back in he was sweaty. His face was gray.

Angry and scared, I blamed the doctors. Shouldn't they have given him some instructions after his procedure? They drained 9 liters of fluid off and sent him home with no instruction other than, "You may have to do this again."

I stopped at Wal-Mart in Huron to buy electrolytes. I thought maybe that would help his muscle cramps. He wouldn't try them. He was too nauseous. We tried some Gatorade, which didn't help.

On December 31, I drove Not Jersey to the Sioux Falls airport and he flew home to Hawaii without me. The next day I drove back to Sioux Falls and dropped Mom off at the Heart Hospital. Mom was having surgery to remove a lobe of her lung.

I begged Dad to come to Sioux Falls. I said, "We'll all go together. Mom can have her surgery, and you can go to the ER and then you'll be in Sioux Falls."

Dad wouldn't go. He told me to drive Mom to Sioux Falls and stay with her. I did not want to leave mom alone to have a lobectomy. She said, "I have doctors and nurses to take care of me. Your dad needs help."

A few days later, Dad was so miserable he allowed me to take him to the Miller Clinic. They prescribed him some medicine for his pain and nausea. He tried it, but it wasn't enough. His belly was full of fluid again. He was in terrible pain.

On January 5, Dad finally agreed to go to the ER in Miller. He drove himself. I didn't know that would be our last pickup ride, but he did. He said, "I know how this ends. I'll die in the hospital or I'll go to the nursing home."

Dad was admitted to the Miller Hospital. They started working on getting his pain under control and started searching for a surrounding hospital that could drain the fluid again. From the beginning, I wanted Dad transferred to Sioux Falls. I thought if we could just get him to Sioux Falls, then we could fix this.

The pain medicine helped. Dad was really strong and it took a lot of drugs to numb him out. He did not want anyone to know he was sick or in the hospital.

On January 6, Todd Waring and Connie Templeton drove dad to Mitchell in the ambulance to have the fluid drained. I followed in my rental car. Mitchell had just gotten 2 feet of snow and the town looked like a white war zone. My cousin Clayton met us at the hospital and Dad was so happy to see him.

Dad looked better after the procedure, but then the doctor's gave him some bags of fluid. I watched in horror as his stomach filled back up. After a few hours, the IV was finished. Dad walked himself back to the ambulance.

That's when I knew. Dad was dying. I could finally see what had been in front of me all along.

Chrissi bought a ticket and got on a plane to South Dakota. My Dad's sister came to visit him at the hospital the next day. The pain medicine allowed Dad to get some sleep, and I was grateful that he had some relief.

I stayed with Dad in his hospital room as long as he'd "let me." After a while, he'd say, "Go home, Mandy. This place is no fun."

I would tell him I loved him. I would stare at him and wonder if it would be the last time I saw him. Then I would drive across town and stare blankly out the window. I texted our family members and a small text group of Dad's friends to update them on Dad's status. I would call the Heart Hospital to get an update on Mom. I stayed home as long as I could stand it, and then I went back.

On Sunday, January 8, Bob Swenson drove Mom and Chrissi home from Sioux Falls. Although, I'd only been alone with Dad in the hospital for 3 days, it felt like weeks. Dad was happy to see Mom. He acted annoyed Chrissi had flown home (although, I know he was happy she was there). He held his hands up and made circles in the air, "So many people moving around," he said.

Days passed. By this time, word had gotten around town, and visitors started dropping by. Dad was happy to see people. It would perk him up. When they left he would tank. All his energy gone.

I was still pushing for Dad to be transferred to Sioux Falls. We were told Sioux Falls hospitals didn't have any available beds. A patient with a broken hip was sent on to Sioux Falls, but Dad stayed behind. The doctor said Dad's case was confusing. His liver labs appeared normal.

I asked if we could see a Sioux Falls doctor via telehealth. They arranged for Dad to meet with a hospitalist from Avera in Sioux Falls. She explained his condition to him, which he already knew. She didn't have any answers. Dad was happy to talk to her. Since the hospitalist didn't have any answers, I asked if Dad could speak with a liver doctor by telehealth. The Miller Hospital started making arrangements.

At some point the doctor told us Dad's kidneys started failing. Dad sounded so vindicated, like we hadn't believed him, "See! I told you guys I feel like shit."

Not Jersey flew back to South Dakota. I drove through a ground blizzard to pick him up in Sioux Falls. On our drive back Christine texted me, "Dad's going palliative."

Palliative, meaning he's tapping out. No more fighting to get to Sioux Falls. No more IV's. No more waking him up for labs. My stomach still drops thinking about it.

I got back to Miller and Christine told me they're kicking Dad out. The hospital isn't a place for people to die, they said. Dad needed to go on hospice or go to the nursing home.

I started calling my lawyer friends and hospital administrator friends. Turns out, this is true. I said, "Mom, I guess they can kick us out, but we can drag our feet."

Mom said, "We'll take him home."

Visions of a hospital bed in our living room flashed through my mind. I imagined lifting Dad out of bed. Mom can't lift him. She is healing from surgery. At least he doesn't have to go to the nursing home, I thought. We'll figure it out. He's sleeping most of the time now. As long as they give us enough drugs to keep him comfortable at home, we can do this.

January 14 was the day I thought Dad was going to die. He slept most of the day. His breathing sounded different. The air in the room felt different.

I turned on Dad's Beatles music and went to sleep on the pull out love seat in the corner of Dad's room. Not Jersey stayed awake with Dad, so I could get some sleep. I hadn't been sleeping well. Then, "Amanda! Amanda! Wake up," Not Jersey shook me awake. "Your Dad is trying to get out of bed."

Dad was indeed awake. He wanted out of that bed. "Mandy, help me up! Help me up!"

"You can't stand up, Dad," I said.

"Me? I? Tim?" he said incredulous. His eyes burned. "I want out of here, Mandy. Let's go! I want to go home."

I'd seen that look thousands of times in my life. Even though he was in a hospital bed, he was still intimidating. I couldn't defy those eyes. I went around and lifted him up. He could stand, but couldn't walk. He was so pissed. I buzzed for the nurse.

The nurse and the aide stood Dad up over and over again. They were so compassionate. They were not hurried. They were not afraid of the eyes.

We cannot take him home like this, I thought. It was one thing if he were asleep, but not if he's awake and he wants to stand up. We aren't trained for this.

I told Not Jersey I needed a break from the hospital for a few hours. I went out to the nurse's station, "I thought he was going die and now he's standing up saying he wants to go home," I said.

"I don't blame him," she said with such understanding.

I went home and couldn't sleep, so after a few hours, I went back. Dad was asleep. He woke up when Mom walked in at 5:00 a.m. "You're here," he said, "Help me up!"

"I can't help you up," she said calmly.

This went on most of the morning. Dad had a lot of visitors that day. Unlike the previous day, he was awake.

That night his breathing sounded...wet. The fluid from his stomach was pushing into his lungs, I thought. I stayed with Dad until midnight. I told the nurse his breathing sounded bad.

Christine woke up and went to stay with him. She said the nurse worked with Dad the whole time she was there to try and ease his breathing. I have never been so grateful.

I went around 4:00 am. Dad was sleeping. I pulled up the recliner and played the Beatles. I shut my eyes and dozed until Mom and Christine arrived around 8:00 am.

My cousins K&E walked into Dad's room at 9:00 a.m. We visited. E talked about her Dad's death.

Christine went out to grab a coffee. I went to the bathroom. Mom was visiting with K in the hall. Not Jersey and E stayed in Dad's room.

When I stepped back into the hall, Not Jersey touched my arm, "His breathing has changed," he said.

We said goodbye to K&E and went back to Dad. Did he wait until we left the room to leave us? You hear people say that happens.

He always wanted us to be close with our cousins, like he had been. He would have been happy to hear us laughing and talking to K&E. From the time of his diagnosis, he had been leaving one hand out of the blankets so when his family came to take him to heaven, he would be ready. I thought his brother Pat would be the one to come. Dad and Pat were very close. Now I think Mike came to take him.

I am glad he didn't suffer long. This sentiment does not diminish the fact that he suffered. I wish that could have been different. He accepted his death. I wish he could have had a quick and painless death once he decided that he was ready to go.

I am grateful I was home to spend time with him in his final days. The painful memories of those three weeks are fading, but they are still sad. Dad hated when we cried. He would not want me to be sad. Most days I am not.

I see my dad in my nephew. They have the same brown eyes and broad shoulders. The same goofy rambunctious spirit.

In the hospital Dad told Christine, "It doesn't matter where you are - if we are together or apart. It's like a string tied all together. Always."

One year later, we are still four knots on a string.