Three years ago today I drove my dad to the Wake Forest Baptist Medical Center to be admitted for some tests. He had been having strange symptoms for almost two years and the MRI they gave him in the ER a few weeks prior had shown something funny.
Three years ago today I held my dad’s hand while they stuck a needle into his spine. They gave him a local anesthetic so I don’t think he felt much. A resident talked a newer doctor through the lumbar puncture procedure and the directions combined with the pressure of the needle on my dad’s back made me hot and nauseous. I thought about leaving the room so I wouldn’t faint, but I wanted to be strong for my dad. So I didn’t.
Three years ago today I drove the 12 hours back to my home in Michigan.
Two years, 11 months, and 28 days ago my mom called to tell me that they had my moved dad to the ICU. They didn’t know what was wrong except that they knew he couldn’t breathe right on his own. They put a tube down his throat.
Two years, 11 months, and 28 days ago the test results from the lumbar puncture and blood work weren’t back yet and some wouldn’t be back for weeks. They didn’t know what was wrong. They were just trying to keep him breathing.
Two years, 11 months, and 27 days ago was my mom’s birthday. I had flowers delivered to her in the ICU waiting room.
Two years, 11 months, and 26 days ago I flew from Michigan to North Carolina. When I picked up the rental car at the Greensboro airport I didn’t know that I would be keeping that car for the next month. When I held my dad’s hand in his cubicle nestled between ICU curtains, I didn’t know that I would be sitting next to his hospital bed for the next two months. When I opened my suitcase that night in my parents house, I didn’t know I would be living out of it for the next three months.Two years, 11 months, and 22 days ago they took dad out of the ICU. I don’t know if they thought he was better enough or if they just needed the bed but that night was one of the worst of my life. Every night he was in the hospital and not in the ICU was terrifying. In the ICU there was always someone nearby and he had monitors on him for his breathing and heart rate. In the regular room, he was all alone. And we were right to be scared. I spent many sleepless nights in the reclining chair next to dad’s bed. One night I could hear him breathing too fast and being restless in the bed. Hyperventilating was what usually sent him back to the ICU so I went to get the nurse. In the minute that I was in the hall, he had somehow yanked the feeding tube out of his nose. It lay there dripping stomach secretions and feeding tube formula on the floor. Two years, 11 months, and 25 days ago they put him right back in the ICU. He ended up going back in there three more times. He was intubated two more times. They gave him CPR once.
Two years, 11 months, and 21 days ago he forced his breathing tube out with his tongue. He was often restrained with soft wrist restraints during this time and he hated being intubated so much that he had used his tongue to wiggle it out.
Two years, 11 months, and 20 days ago dad went for his first surgery. It was a brain biopsy. Mom and I sat in the waiting room for hours terrified but hopeful. The neurologists told us that the pathologists could look at the samples right there as they took them out of dad’s brain. Then they might find a cause and, with a cause, could come a solution. They looked at them. The samples were inconclusive. Further tests were inconclusive. There were never any conclusive results from any test to diagnose dad’s illness.Two years, 11 months, and 13 days ago a neurological attending and all her students took us into a room with comfy chairs (by hospital standards) and lots of boxes of Kleenex. She said it was time we considered palliative care. I didn’t even know what that meant. She meant that she thought dad was dying and we should talk to the “they’re dying let’s keep them comfy while they go” people (aka palliative care). We did. Sitting in the waiting room. In a hallway. The guy said that we could choose to stop feeding dad if we wanted. We said no. We believe in giving people food. Even if they are dying.
Two years, 11 months, and 9 days ago They gave him a tracheostomy to make it easier to help him breathe and a feeding tube to get him nutrition. That surgery was the most stressful of all. It wasn’t the surgery. It was the period right before the surgery. Dad was hyperventilating again. His brain told him he needed more oxygen when he really didn’t and the lactic acid buildup in his cerebrospinal fluid made him out of his mind restless. The only thing I found that seemed to help calm him was praying the rosary out loud. I prayed countless rosaries in those two months. I prayed until I was beyond hoarse. There was nothing else I could do. I stood next to his bed for at least an hour in the surgical prep room. All the other patients moved on to surgery. We were alone in a room once filled with rows of hospital beds. Dad’s surgery room wasn’t ready. We had to wait. The nurses stood in a corner and waited too. Dad said his chest hurt so they hooked up an EKG. It was okay but now his hyperventilation had gotten so bad that he wasn’t well enough for surgery. Yet they couldn’t send us up to the ICU because there were no beds available. I stood there for an interminable time. Mom was at work and I felt so alone. I had to be there. I had to be the strong one for him and all I wanted to do was run out the door and all the way out to the parking deck railing, lean over the edge, and scream and scream and scream….
One of the nurses in the surgery waiting room had on a saint bracelet. (Rare here in the south). I complimented her on it. She told me about her son who is a priest nearby. They found dad an ICU bed. That caring nurse took us to the elevator. When we arrived at the elevators, she told me how refreshing (though rare) it was to see another Catholic here at the hospital. As I got on the elevator and the doors closed, she walked back towards the holding room and shouted out, “Hail Mary! Full of Grace!” and I replied, “The Lord is with thee!”
Mom got to the hospital. I took a walk around the hospital. I went to the bathroom. I cried. A few days later dad had a successful surgery.Two years, 10 months, and 22 days ago I left my job as a youth minister in Michigan and officially moved to North Carolina to take care of my dad.
Two years, 10 months, and 5 days ago they “discharged” dad from the hospital. He was still undiagnosed. He is still undiagnosed. But they had run out of ideas. And the longer patients are in the hospital the worse it is for the hospital’s bottom line. (Aka short term patients earn them more money per night than long term patients like my dad). So they sent him to a nursing home. I spent every night that week in his nursing home room on a cot I brought from home. A few days in to his stay we noticed he was getting symptoms that should have been stymied by his medication. I asked about his medication. They couldn’t find it from their normal pharmacy so they hadn’t been giving it to him. They hadn’t told mom or me or him. For other people the medication that dad is on is used to stop bedwetting. For my dad it prevents him from a life threatening level of dehydration due to diabetes insipidus. The nurse called 911.Two years, 9 months, and 26 days ago I drove behind the ambulance to the hospital. When I got there dad was already in the back and they had me wait in the waiting room for a few minutes. When I got back to him, he was alone, still on the backboard, and screaming in agony. At that time, he had a stage three bedsore on his backside. He was lying directly on an open wound on a hard piece of plastic. Alone. I held his hand and talked to him until they came to take the backboard out from underneath him.
Two years, 9 months, and 21 days ago he was discharged from the hospital again. We found a different nursing home for him. After a few nights I felt comfortable with him sleeping there alone. He had a roommate and a call bell. We kept our own charting of all his medication and input and output. When you are 57, I am certain the most depressing place to be stuck is in a nursing home, unable to get yourself out of bed, with a trach in your throat so you can hardly speak.
Two years, 9 months, and 9 days ago dad was alive to celebrate his 58th birthday.
Two years, 8 months, and 16 days ago was dad’s first time in a car post hospital. Mom and I drove him to Duke Hospital for a consult with the same neurosurgeon who operated on Ted Kennedy. He had no useful information for dad.Two years, 8 months, and 3 days ago they told us that dad had to leave the nursing home in three days because his insurance had run out. We had three days to get a bed and a feeding tube pump and a suction machine and a primary care doctor and nursing care and some sort of transportation home for dad. We were also in the process of moving to a new house. Three years and one week ago I had driven down to NC to help my parents move. Dad’s illness had put that on hold. But the old house wasn’t wheelchair accessible so we had to get into the new house somehow. In three days. And we did (in six days). The first piece of furniture in that house was my dad’s hospital bed. Since dad has been home it has been…Grueling. Terrifying. Frustrating. Depressing. Hopeless.
Today I can’t even put it into words, these past three years. I feel like if I did you would think I need medical help. And I probably do. But I can’t afford it.
Today it is beyond hard to keep my sanity doing what I do day in and day out. I am my father’s full time caregiver and I have two part time jobs to pay the bills. My mom works full time and she takes care of dad on some nights and weekends while I work. We get no disability, social security, or any sort of government assistance. We get no home nursing care from insurance. They say that all dad needs is “custodial care” and”custodial care” is not covered by insurance.
Is it”custodial care” to fill his feeding tube with food? Is it”custodial care” to help him roll over in the middle of the night? Is it”custodial care” to change his diaper? Or brush his teeth? Or give him a bath? Or use the hoyer lift to pick him up out of bed and put him in the recliner?In the past we have gotten nurses and CNAs from a local agency to care for my dad for a few days. They charged us $700 a day. Dear insurance company, is it “custodial care” when a 30 year old daughter must put her life on hold to move home and care for her father?
When you do these things for your dad, who is not even 60 years old yet, your outlook on life changes. Many things change. Many change for the worst.
But some change for the better.
I know how strong I am now. I know what I can handle and what I can handle is a shit ton. Sometimes literally.
I know I can be there in a crisis. I know I can make good decisions under pressure. I know I can handle gore and all sorts of bodily fluids. I know I can juggle. A lot. And get by on little sleep.
I know that God is real and he is holding me so tight right now as I write this and cry. I know I can go through hell and I will still believe in him and he will still believe in me.
I know that I am worth gold. That I am precious and beloved in his eyes. Even when I feel alone and unloved and unappreciated. He loved me first and he loves me best of all.
I like to compare it to a frog in a pot of water. Have you heard about this? When one cooks a frog, one plops it into a pot of cold water. The frog is content and so it stays there. The cook turns on the heat but the frog doesn’t notice the slow rise temperature until it is too late and he is cooked.
I am a cooked frog. I never saw it coming. One day I was driving dad to the hospital and then suddenly it is today, three years later and I am emptying his urinals, changing the dressing around his peg tube, and taking him in the wheelchair van to his diagnostic neurology appointment.
I didn’t see it coming, but here I am, just trying to keep up, and praying desperately for a better tomorrow. It’s three years later. It’s not what I expected. But my dad is alive. My mom is alive. And I am too. So….that has to count for something.