For Dad, it’s Alive Hospice, Murfreesboro, Tennessee.
The Nashville facility was full and the admissions nurse so determined that Dad needed to be there that she sent him to the Murfreesboro campus at midnight Friday.
Daddy rests in a large room halfway between the nurse’s desk and a family room containing comfortable chairs, recliners, and couches that flip into beds. There are several family rooms here, one with a dining area in front of a wall full of windows. The light streams in as if on cue.
In Dad’s room, we keep the lights dim. The room is quiet and peaceful; so is Dad.
He only stayed at the skilled nursing facility less than two days. We knew it was not the place for him, and when his kidneys began to fail Friday, the attending nurse practitioner recommended an immediate move.
With the help of the SNF’s social workers and nurses, Alive Hospice Nurse Gail ordered an ambulance for 11:00 P.M. They arrived at 11:45, two youngsters in ball caps reading Medic One.
“I’ll be riding in the back with him,” the smaller one said. “I see his diagnosis here is dementia. Has he ever become combative or kicked or punched a nurse or tech?”
I hesitated. “Yes, he did at the hospital, but that was when he was in complete psychosis. He’s not doing that now.”
“Well, I just wanted to let you know that if that happens….”
Big Guy butted in. “No, no,” he told his sidekick. “If something happens, you just let me know and I’ll pull over to the side of the road and come back there to help you get him calmed. We want to be very soft…soft.”
I could actually imagine a scene like that.
I left before the ambulance. The ramp to I-440 was closed, probably because of a fatal accident earlier in the day, but when I turned around to go the opposite direction, there were cars making left turns onto the interstate so I followed them.
I met Shirley, the night charge nurse, the techs, and the front door security guard. Shirley went over the care plan, medications that they’d be using, and ways they operate. She said the doctor would see me on Saturday. I told her it was already Saturday.
A nurse stuck her head in the room. “I am wondering what is taking that transport so long. Did you leave a long time before they did?”
“No, I was right in front of them, but I bet they got to that closed ramp and found another route.”
Turns out, that’s exactly what happened. They were automatically re-routed.
Dad was awake. Shirley explained what was happening.
“Ernie, we’re going to give you some pain medication and then we’ll give you a bath first thing and get you all freshened up.”
Two techs and two nurses busied themselves over him. He talked to them in slurred speech and from an altered state, but they caught about every third sentence.
“You are a handsome man,” one said. Another asked him about his 72-year marriage. “What’s the secret?” she asked.
“Let each other be free to grow and develop” is what we think we heard. I confirmed that he might have said that.
Then came the washing of the private parts.
“Ernie, we are going to have to wash you down there. Normally, we’d just let you do it, but you have some leftover bm there and we want you to be clean, okay?”
“Ah, you girls just want to look at me,” he said. “All the time.”
We all laughed at him.
“No, we don’t, but I’m going to raise your gown and clean you up and then we’ll put a fresh pad and gown on you.”
He picked up a towel a tech had left beside him. “Then I’m just going to put this over my face,” he said, and hid his whole head from the offending eyes.
We laughed some more, but they got him cleaned up and bundled up in his new bed.
Dad now gets a pretty stiff cocktail of haldol, morphine, and a valium-like drug. The dosage is small but repeatable. If he is not calm twenty minutes after the last offering, the nurse starts the routine again, or she slightly increases the morphine.
He lies quiet in the bed most of the time but when the meds start to wear off, he twists, grimaces, and mumbles.
The grandsons and families came to visit yesterday, including Jaxton and Savannah, ages 5 and 3. Neither was upset by Grandpa’s condition. Savvy said hi to him several times, anxious to get an answer from him. Mom was glad to see the little ones.
I stayed last night. I played music to him and sang to him, hoping something might connect. In the middle of the night, I heard him say, “Diana.” I wasn’t sure of that until I sat up and waited for him to call me again. It’s like what happens when you try to say my name without being able to move the tongue.
“Lie-ah-uh,” it sounds like.
“What, Dad? What do you need?”
He grasps my hand. I kiss him on his old bald head.
My daddy hovers, sometimes thrashes, naked, his mind somewhere along an invisible jagged line between his tiny spot of time and space on earth and the ultimate reality of Infinity.
His heart beats so fast sometimes that we fear stroke. Doctors get his heart rate down and his blood pressure goes up. Get the blood pressure down too low and some other wheel falls off the old bus.
He fell in his bedroom sometime very early a week ago Tuesday morning. Before we found him on the floor with a bloody gash on his head, he’d pulled shirts, belts, and a bootjack from his closet. He told us he’d ducked into a shed for shelter from the rain and realized he’d stepped into some man’s corn crib. Then he couldn’t get out of the field and had crawled through rough straw for miles.
Dad did not get confused because he fell; he fell because he was already confused in the night and hallucinating. We’ve seen a slow slide toward dementia for about three years, but since last Christmas the disease has tracked him like a cat, consistently and with increasing speed. We’ve watched a wretched auto-immune disease rob him of the ability to enjoy food and then to swallow well. His legs grew weaker and weaker, so often he could not stand, even with his walker.
In the emergency room after the fall, he fought with three cats, two black and one black and white, that kept pouncing on the bed. Every time he kicked them off, they came back. I shooed them away. He re-told the corn crib story with variations and repeated an earlier adventure stripping tobacco with two youngsters who would not talk to him. He was pretty sure they could talk, they just wouldn’t. The ER physician called a hospitalist to provide overnight observation.
Once in the room on the fifth floor tests began, including an ultra-sound on his legs. The technician came in Wednesday morning, made it through the scan of one leg and then Dad refused. He kicked at the machine operator. She dodged and moved the equipment. He kicked some more. When nurses arrived to rescue the tech, he doubled his fists and slapped at them.
I said, “I don’t think you’re going to get that next one.”
She smiled and said, “I’m pretty sure of that.”
Within a few hours, the a-fib grew worse and Dad grew so wild and combative I wished for restraints. They came quickly. He did not sleep–not one wink-– for four days. One night, I bent over to pick something up just under the edge of his bed and even though his hands were tied, he grabbed my hair. It took a few minutes to pry his hand loose.
My dad’s wild mind fashioned a scary story with escalating horror. He gave me the base plot as he dressed me down. I was trying to kill him, leading a band of nurses are my followers. He kept saying that he can’t believe I would do this for money. “Greed. Evil. You are no daughter of mine.” I stood stark still, as if at attention, stung and disoriented. The words might have attached themselves to a deep sorrow if I hadn’t heard a voice. “This is not your dad.”
For several hours, there was a huge farm machine loose on his farm. We–the nurses, Jade, John, and I–had already destroyed the farm with this wrecker/excavator. We knocked down trees and ran through the shallow creek, breaking the flat limestone into small pieces. We were going to let it run over him, and then it was somehow above him and we were preparing to let it fall to crush him. One hour we were setting him afire. Another time, we were trying to poison him.
He disowned me, then started yelling again. I tried to slip a dry mouth lozenge in his mouth but I wasn’t quick enough. He can’t bite since he has no teeth but he clamped his jaws shut, turtle tight. Then he said to the air on his left, “Jameson, look at your mother. This is the kind of mama you have.” Jameson is my grandson, not my grandson, and he is safe at home in his own bed.
Dad got back to serious yelling. “Where is Mom [my mother]? She’s the only good person around here.”
The student nurse asked, “Does he like music?”
“Yes!” I said. “I can’t believe I haven’t thought of that. I should have brought in a player. There’s no music channel on the TV.”
Wait, I thought. I could stream from my laptop.
I grabbed my almost-dead HP from my bag and began the frustrating process of hooking up to the hospital free-for-visitors wi-fi. It’s a finicky network. I spent twenty minutes and then gave up.
Dad changed the venue. “Help! Come on, we’re down here in the bottom by the creek. They’re trying to crucify us all.”
The last time he had mentioned crucifixion, the nurses were attaching restraints. I watched him pull at the cords and thought of rodeos and roped calves. I remembered a pig bound and hung for slaughter at my grandfather’s farm, and of holding my dog Murphy for an injection.
That night, I left him praying. The words were plain and the sentences cohesive. “Lord, thank you for this life I’ve been given. And if you want me to die now, I’ll come. I ask you to forgive Diana and all these evil persons who are doing this to me. They know not what they do. Take care of their little children.” I walked out of the room, on down the long hall to the parking garage.
The next time, he was on the hill at the farm in Smith County. He called for his mother. “Mama, come on here. I’m up on the hill. They’re about to kill your last son. Don’t you see the smoke?”
He did not remember that seventy-two years ago on the same day, Halloween, he and my mother took a long taxi ride to Georgia and married. He was seventeen, she “fourteen-almost-fifteen,” they said.
My mom waits at home, not really worrying, just pondering. She is dressed in blue matching pants and top, her curly hair neatly combed back, and her ensemble accessorized with the usual rings, earrings, bracelet, and necklace.
After two days and several doses of psychiatric drugs, the restraints were removed. He was still agitated but not trying to hurt anyone. He rolled his sheet and blanket into a wad and tossed them to the floor. He pulled his arms through his gown, easing the heart monitor through a sleeve. The gown and a couple Chux pads found the floor. I heard a pop, pop, pop as he removed the leads to the heart monitor. He seemed pleased that he had wires to untwist. He repeated the process several times.
He slid down the bed and pounded the foot rail in a surprisingly steady rhythm. He called for my mother, yelling louder than he’s been able to in years.
I told him, “Dad, Mom is not here.”
Sometimes, for a minute or two, he believed me when I told him, “You’re in the hospital, Dad.”
“In the hospital? What am I doing here?”
I told him, “You have to stay for a while until you get better, and you are getting better.”
“Am I in South Carthage?”
“No, Dad, you’re in Nashville. At St. Thomas.”
At times, it connected and he said, “Oh-h-h-h-h-h.” Another time he added, nodding his head, “So that’s the problem!”
One afternoon, he asked, “Did you know the cats are back?”
“No,” I said. “What are they doing?”
“Oh, they’re just lying around down there at the foot of the bed.”
I said, “But you’re not trying to kick them off.”
“No, I got used to them.”
From time to time, the psychiatrist Dr. Le Coguic stuck her head in the room to ask a few questions with telling answers.
She: What year is it, Mr. Blair? He: 2017. She: When were you born? He: Five, twenty-nine, no. Five, nine, no. Twenty-five. She: That’s good enough! Now who’s the President? He: Truman. She: Hmmmmm.
I snuck in a word there. “He really knows. I asked him myself yesterday and he said Truman and I said, ‘No, it’s Trump, Dad,’ and he said, ‘Yes, that’s who I mean so just pretend I’m saying Trump when I say Truman.'”
Dr. Le Coguic laughs out loud. “Good enough!” she said.
The next time she asked him, he said, “Oh, that damn Trump. Truman.”
The morning of November 7, I walked into the room where a soft-spoken chaplain introduced herself to me as Gail. She was asking Dad if he was a spiritual person. She didn’t understand him, but he answered her, “I suppose so. I’ve got a Master’s of Divinity from seminary.” I translated a few sentences to her until Dr. Chris MacMurdro from the Palliative Care Department stepped in. Because Dad was still talking with Gail, Dr. Mac asked if we might step down the hall to talk.
“Call me Dr. Mac or Chris,” she said and explained her specialty. After several minutes of discussion about what I might expect or anticipate or decide, Dr. Mac told me with his refusal to eat or drink, Dad would likely be gone in two weeks. It’s too early for hospice, she said, but you will need them. If Dad goes to a skilled nursing facility, he might get a few days.
Just as Dr. Mac and I were ending our conversation, Gail approaches us from the doorway of the family waiting room. “Your dad,” she said, and placed her hand over her heart. “Oh my. And thank you for helping me understand what he was saying. I could understand him after that.”
“Good,” I said.
“This is the first time a patient has prayed over me,” she said.
“He did?” I asked.
She teared up. “I asked him if he would like me to pray with him, and he took my hands and said, ‘I’ll pray for you.'”
“And he did?” I said.
“Yes, and now I have to go sit down somewhere and cry.”
Later that day, when I told Dr. Mac the evening Zyprexa seemed to make Dad more agitated instead of less as it was supposed to do, she wanted to revisit his history of hallucinations and his increasingly weak legs. “Let me go back and look at his chart again,” she said. “I’ll call you back.”
“Dad,” I said, “would you drink one of your protein shakes? I have a cooler over here with three drinks in it. Which one–chocolate or vanilla?”
His eyes lit up a little. “Chocolate!”
I rolled the bed up and offered him the straw in the bottle. He tried to take the bottle.
“I want to drink it. Myself.”
“Well, okay.” I grabbed some Chux pads and tucked one around the top half of his body. I helped him hold the drink, with him struggling to wrest it from me, until I knew he’d had enough that he wouldn’t immediately pour the stuff all over himself.
He drank almost all of the eight ounces. He drank almost ALL of the EIGHT OUNCES, the most food of any kind he’d had since more than a week ago.
Dr. Mac called. “Diana, this is not Alzheimer’s. I’m thinking more like Parkinson’s with Lewy bodies. That would explain the reaction to the Zyprexa. Do you know much about Parkinson’s?”
“Enough. A lot,” I said.
She said he wanted to confer with the hospitalist, Dr. Meadors, about switching him over to something like Valium, which would be much more effective if we were treating Parkinson’s.
Sure enough, the Valium (or whatever it was) helped calm him. Dr. Mac called to say that Dad appeared now to qualify for in-patient hospice, and she had arranged a meeting with Rosie from Alive Hospice downtown. She explained her wish for inpatient hospice.
“The Parkinson’s thought changes everything. His medications seem to be headed in the right direction. He could use the meds management at inpatient to get them all tweaked to the point that you could manage him at home with the help of home hospice.” She fears for my ability to physically manage him at home right now and for my mother’s emotional health as she watches Dad decline.
I made her promise that she will always work toward our goal of getting him home. She repeats to me all the information I’ve given her, including the DNR and comfort care directives.
End of day, Wednesday, November 7. Dad slept peacefully almost all night.
Yesterday morning, he knew me when I arrived. He smiled and said, “Hello, honey.” Dr. Mac called to discuss the latest strategy since he has improved enough that he probably does not qualify for inpatient hospice. “We’re thinking we can send him over to the rehab facility.”
Dad and I sat in quiet most of the day yesterday. He was tired. He thought he might want sausage and eggs. I tried. He drank a bit of milk shake. I tried again. I massaged his aching hands with cream, swabbed his gums and washed out his mouth.
“You’re going to make me bald,” he said when I rubbed his head. That’s a little joke we have. Not long after that, we both dozed at the same time.
When I told him I was leaving for the day, he said, “Be careful driving home. Is it still raining?”
I said, “No.” It did not rain all day yesterday.
Just as I started to exit the room, he called softly but firmly, “You are going to call Red Blair to help you get that big machine off the hill, aren’t you?”