This is part ten of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part one, part two, part three, part four, part five, part six, part seven, part eight, and part nine.
It was early in the morning in Prague when I called my wife and dragged the word “delirium” onto her breakfast plate.
I had looked online and read about delirium from trusted sources– I learned that it can be a disguise for many serious conditions, the scariest of which might be Lewy Body dementia and a progressive decline in cognitive function, which might signify the oncoming of Alzheimer‘s and/or Parkinson’s disease.
Scarier still, it’s not clearly understood, even in the medical community.
Many of the symptoms fit Dad’s current persona. He was disoriented, agitated, generally unfocussed yet easily fixated on one hallucinatory idea (the “hot side/cold side” diatribe, for example) and the notes he left around the house were scribbled gibberish. What made the most sense to me and perhaps, what I was hoping for, was that this delirium could merely be a temporary byproduct of some infection, a reaction to medication (or lack of medication) or improper nourishment.
Jen understood and agreed that that was the most logical (read: hopeful) explanation. She kept telling me that I should not be afraid to push the hospital for treatment and answers. I explained that there hadn’t been anybody available to push over the weekend but tomorrow would be Monday. We expected to hear from all the relevant doctors who made their rounds. Jen was off to work but first, planned to visit the St. John statue on the bridge for extra karma. I collapsed into my hotel bed. We would be off tomorrow morning to greet all the doctors…
… Or so we thought. I met mom and Annie in Dad’s room at 9am sharp. He was asleep and there was nobody around. I tried to look for a chart somewhere. The whiteboard had some scribbling on it; medications, times and instructions in code, which made about as much sense to me as one of Dad’s cryptic notes. Finally a nurse came in: Gary was in his 50’s and didn’t know much except that Dad’s GP, Dr. R, had already made his rounds for the day. He’d been in at 7am. We were pretty annoyed that we’d missed him already. We had all sorts of questions and wanted to know what the plan of attack was. The cynic inside me considered that he deliberately showed up so early so as to avoid running into visitors with questions.
My frustration was getting an early wake up call.
However, Gary said he would try to get a hold of the head nurse and a Physician’s Assistant to see if they could shed some light on the situation. Soon, a nurse practitioner appeared who didn’t appear to know much, except that since Dr. R had appeared on the scene, he was calling the shots. But Dr. R was nowhere to be found. Mom asked if any further tests were done. Had the nutrient bag been approved by insurance? The NP had no clue. We reminded the NP that Dad hadn’t eaten in days. He looked so weak. He lay there, pale, unshaven, stiff as a board with his head back, his mouth wide open. I was fidgeting. Had Johnny been on target when he accused them of just letting Dad waste away? Annie seemed worried. Mom just calmly sat by Dad’s side, holding his hand. Things were out of her control. But she’s a woman of deep faith. She was patient. “One day at a time,” was her mantra.
I took some of the idle time to display a few of the items I’d brought along. I’d read that with delirium patients, it was important to keep them focused on reality, by reminding them what day it was, who was in the room and what’s going on in the world. Familiar items from home and props such as a clock, calendar, newspaper and family photos could help keep a person in the moment. I brought everything and Annie started to create poster boards collages of family photos, labeling all the people in them; including her children and their children, who were newborns. Mom and Dad had yet to meet their great grandchildren.
Then Dad woke up. He seemed confused but recognized us. I went to find Gary or the NP to let them know he was up. Back in the room, Mom was by Dad’s side, stroking his hand. “I see you’re up, Jack. Good morning!” Gary beamed. Dad seemed to like Gary and asked for his glasses and dentures, which were kept soaking in a container by the bed. His hearing aids were in another container. An assortment of pens and paper were nearby. Gary struggled to get Dad’s dentures in. They hurt him and he couldn’t bite comfortably. Then again, he was so weak and gaunt that they didn’t fit him anymore. And his hearing aids never seemed to work for him. They would ring with feedback and he’d get frustrated and not bother to wear them. His glasses were smudged and didn’t stay positioned on the bridge of his nose either.
There was just so much minutia necessary to get Dad on par with everyone else.
Dad also needed to be cleaned up. Gary asked that we leave the room while he did the deed. Outside the closed door, I could hear Gary struggle to roll Dad on his side and Dad screamed in pain. He screamed when the bed was raised or lowered even a fraction. He screamed when someone tried to move him just the tiniest bit. It sounded like he was being tortured. It’s not fair to say he exaggerated but even when he was healthy, he would scream in terrible pain if he merely stubbed his toe or cut himself. He was squeamish even in the best of circumstances. Still, I couldn’t take it. I walked in and offered to help.
While Gary rolled Dad over on his side, I looked into Dad’s eyes. He looked back at me. I told him how much I loved him, how well he was doing, that soon it would be over, everything was going to be okay. I stroked his wiry hair. He desperately needed a bath, tooth brushing and a shave. As Gary cleaned him up, I cradled Dad’s head. I told him how amazing he was. Gary finished and as he left, I apologized for bursting in.
“I know you guys have protocol here. I’m not trying to do something I’m not supposed to, I just want to help.”
Gary looked at me, “No, you’re great,” he said.
“So let me know how I can help you,” I said. Gary nodded and left.
Mom and Annie came back in and we had our hellos and hugs but they were brief, as Dad seemed hell-bent on letting us know a few details of a conversation or train of thought which he assumed we were already privy to. We had no idea what he was talking about but to him, it seemed extremely important, so we listened. He pointed to the ceiling and described how he had to get a cable and attach it to a winch and then get a bracket and mount that on the ceiling, then he could pull something. Then he would do this and then that. We had no idea what was going on. We thought he was indirectly telling us that he wanted the curtain closed around his bed. So we started to close it but he protested, angrily. Then he started to repeat his cable and winch idea, word for word. When we asked what he meant, he got annoyed. “Why can’t you understand what I’m trying to say? I said I need a cable, then I need…” It went on and on like this. I decided to play along.
“Okay, Dad,” I said. “We’ll build it. You and I will build it together. Is the cable and winch in the basement?”
“Yes,” said Dad. “But first, bring me a protractor…”
I’m thinking, Okay, now what? “Yeah, I can get a protractor,” I said.
“I need to draw it for you. Get me a pen and paper.” Well, this seemed normal to me. Dad had always explained things by drawing them. But when I fetched the materials for him, he just stalled for a bit, his eyes went dull, lifeless. Like that first night I saw him in the hospital, the light had faded again.
He was gone. We all looked at each other: Mom, Annie and me. What was going on?
Then just as immediately, he clicked back into gear. His head gave a little jerk and he came back. But he didn’t seem to know why he was holding a pen and clipboard. He was shaking a little. He started to draw dots. He was having trouble and asked me to hold the clipboard. He drew a couple more dots then asked if I could draw for him. I had no idea what this was about.
“Put a dot there,” he said. I did. “Now one over here,” he added. I played along. “Now connect the two.” So I drew a line. “Is it straight?” he asked. I agreed that it was a straight line. “Are you sure it’s straight?” I didn’t know what this was. Was he actually trying to accomplish something, just trying to be social or was he messing with me?
“Yeah, Dad. It’s straight.” He held it up close to his face, studied the connected dots and seemed satisfied.
“Okay, now put a dot over here.” He pointed to another spot on the paper and asked me to draw another dot and connect it with a line. This went on for the better part of the morning. Sometimes he asked me to draw two dots. Other times, I was asked to draw circles. Sometimes numerals. Then more dots, in patterns. When we asked what it was we were trying to design on paper, his response was a clouded mix of mathematical formulas and that construct of a cable, winch and ceiling brackets. We couldn’t get a handle on where this was coming from. Was he trying to design something that would improve his hospital room? Was it something he felt might cure him? Was it a home project in his head or just another one of his dreams? More importantly to me, what was the meaning behind it? Was there any significance to this that might clue us in as to what his malady was and how we might remedy it?
Any way you sliced it, it was clear the engineer was sick.
Judith, the speech therapist, arrived, with a lot gaggle of nurses in tow, including Gary and a young, stocky guy named Tim, who looked like he was just out of college. Judith was diminutive in stature but that was about it. Her presence took over the entire room. “Okay, how are you this morning, Mr. Roeser?” she boomed.
Dad looked at her suspiciously. “I’m alright I guess. But first, I have to find the square root of the sum of these two dots…” He started to show her the paper and ramble on about the dots.
Judith quickly dismissed him and turned to us. “Okay, what’s going on with him?”
Mom was simple and direct in the face of this mini-hurricane of a person. “Well, we were hoping you could tell us.” Touché, Judith.
Then Mom proceeded to tell Judith the whole story, ending with the part about him not eating or getting any nourishment in three days. “Well, that’s why I’m here,” said Judith. “We’re going to determine how well he can swallow and then get him something today.” The nurses nodded in agreement and some rushed off to get supplies for Judith. It became very apparent that Judith ruled the roost, when she said “jump” the nurses asked “how high?” Finally, I thought, here’s a person who’s taking charge and going to get something done.
“Thank you,” I said, playing the game. I told her how grateful we were for her help. She seemed like the kind of person who enjoyed getting their ego massaged.
A tray arrived with an array of swabs, juices, puddings and cupfuls of gelatinous liquids. Judith waved her hand and a nurse dutifully started to brush and swab Dad’s mouth and dentures. She tried to get Dad to drink small sips of apple juice but was having trouble swallowing. It was going down too fast, he was coughing and spitting up. He had no muscle control. It was like he was drowning from the sips. The nurses were afraid he was going to asphyxiate or get fluid in his lungs and get pneumonia. It was becoming clear to me that every step in the recovery process was delicate and had a potential setback, every remedy had a potential side effect.
Judith tried to get Dad to drink some of the gelatin from a cup. “Would you like some coffee?” she asked Dad. “I’d love some,” he said. But I’m sure he wasn’t expecting a tawny goo oozing from the styrofoam cup. It surprised him and while I’m certain that contributed to his problem drinking it down, the reality was, he couldn’t swallow. “That’s not coffee! What is that?” he protested. It was thickened coffee. Since thickened liquids went down the throat more slowly, there was more of a chance Dad could control his swallow. From the thick liquids, he could try apple sauce and pudding and eventually graduate to regular liquid and food. That was the hope anyway. But it wasn’t working out.
Judith then cleared her throat, as if to let the whole room know she was about to make a declaration. “This isn’t going to work and I have to go and find out what has been ordered by the doctor. We might need a feeding tube.”
Oh boy, nobody is on the same page here.
Mom explained to Judith that a decision was made to not introduce a feeding tube– a nutrient bag and PICC line was going to be ordered instead.
“I’m going to look into that status of that. Insurance doesn’t always cover it,” Judith said. Mom told her that we wanted the bag, whether insurance covered it or not. “It’s about $300 a day,” Judith said.
“I can afford it,” said Mom.
I didn’t know if that was true– $300 a day would add up quickly over the long haul, but it didn’t matter. Dad needed it. Judith assured us that she’d go find out what the status was with the parenteral bag and come right back. She left and the nurses followed, like ducklings. All the cups were left in the room.
Dad looked at us. “They’re trying to torture me by not feeding me. They’re keeping me here against my will. They’re trying to poison me. That’s not coffee. Does that look like coffee to you?” He then asked to see the cups and wanted me to mark them with dots. I dotted the cups according to his strict instructions. He was secretly marking all the items that were instruments of his torture. I was his accomplice. I played along as he had me mark up cups and other objects with his coded dots. He understood what the dots meant and he trusted I was in on his secret.
It was us against the hospital. I was his ally.
I was at this for at least an hour, when it dawned on me that Judith still hadn’t returned. I went looking for her and found her chatting away with someone at the floor nurses’ station. I stood and stared at her, flashing her the we’re-still-waiting-for-you look. When she saw me looking at her, she moved her conversation behind a wall out of my sight, which really ticked me off. I can’t stand empty promises and my earlier thought of Judith as a positive go-getting problem solver, albeit with a Napoleon complex, quickly eroded. I moved around to where I could see her again and again, locked in on her. She saw me and moved again, out of the line of sight. I’m usually not quick to judge but I clearly saw this as a sign of disrespect. Because she either didn’t have an answer for us about the nutrient bag or hadn’t bothered yet to look into it, she had decided to just run away from the responsibility of telling us about its status. That what’s I felt anyway. She wasn’t a pro, she was the opposite. On the other hand, I realized she most likely was dealing with a lot of patients at once and might have gotten sidetracked. And she also might indeed be working on getting the nutrient bag expedited. But I didn’t know to for sure. And it seemed to me that if Judith had an answer (any answer) then she ought to share that with us and not hide. The underlying reality seemed to be that here in Judith’s little fiefdom, to admit failure or that you don’t know the answer to something, was out of the question.
Maybe it was Dad and me versus the hospital after all.
It couldn’t possibly be that bad, could it? So far, it didn’t look optimistic. I asked the nurse at the desk to please have Judith see us in my Dad’s room, that we were desperately waiting to hear about the nutrient bag for him. If Judith or anyone else had an answer, please see us ASAP.
Frustrated, and looking for something I might be able to control by myself or perhaps just to escape, I asked mom about a few things that desperately needed to be done at the house: a new washer and dryer, a new front stoop and, to put it mildly, a whole new bathroom and powder room. Of course mom hesitated. I told her I was going to do some investigating. I’d shop for some washers and dryers and get measurements. I’d make some calls to contractors about the stoop and plumbers about the two bathrooms. For years, mom had lived without a working dryer. She carried wet clothes up the basement stairs and outside to dry on the line in the backyard, even in winter. Now, at age 90, she would shrug and tell us how resilient she was, being a country girl who lived through the Great Depression. So living without a dryer wasn’t too much of an inconvenience. But she was living without a dryer and a front stoop that was crumbling and had so many holes that chipmunks were living inside of it. It was unstable and an accident waiting to happen. And let’s not forget the bathrooms. The upstairs tub and shower wouldn’t drain, the tiles and grout were falling off the wall, paint was peeling, the sink was clogged. She bathed herself using an old ice cream plastic container with water. And the downstairs powder room sink was also clogged and the toilet leaked.
Should anyone live like this, much less my 90 year old mother with a pacemaker?
I called Johnny and asked him to meet me at her house. We started clearing a path from the basement stairs to where the washer and dryer were. As it was, there was just enough room to walk through. To get new appliances installed, we’d have to clear a much wider path. That had been one of her excuses: “Jack has all his stuff down there and there’s no way to get anything through.” When we’d ask Dad if he’d move his stuff, he’d simply say that Mom doesn’t want a new washer and dryer and that he’d be able to fix it anyway. It went back and forth like that for years. I’d had enough. Johnny and Annie were too timid to take charge.
But Johnny agreed to help me and in a matter of hours, we’d cleared enough room, mostly by moving piles of boxes and clutter on top of other piles of boxes and clutter. Next, I made some phone calls and scheduled contractors to come give estimates. I would be in a town for a while, so between myself and Johnny, someone would be at the house for these estimates while mom was at the hospital. There’d be no way we could do this with either of them home. They’d nix the opportunity. It was pathetic that we had to do it this way but it was the only way. On the drive back to the hospital, we stopped in the Sears store and checked out the inventory of washers and dryers. I was making good use of my time, I felt. I couldn’t just hang around the hospital waiting for the authorities to act. It would only frustrate me. And I could only play along in Dad’s delirious world for so much at a time, especially since I didn’t I know how to behave in that world. I might do something wrong, unintentionally.
We arrived back at the hospital, surprised and delighted to see that the Dad had a new IV in his arm. This was the PICC, attached to the parenteral nutrition bag. Finally, some nourishment for the man. And he was in a deep sleep. It seemed for the moment that there was some peace in the world. I hugged mom and Annie. Judith hadn’t come back at all, but Gary and Tim had arrived with the bag and hooked Dad up. We liked them and I was willing to give Judith the benefit of the doubt. I had some news for mom. I’d scheduled plumbers to come look at the bathrooms, cement contractors to look at the stoop and Johnny and I had cleared a wide swath through the basement from hell. I was taking her to Sears after we got done at the hospital. They were having a sale and I’d found just the washer and dryer for her. I expected a fight but she looked of at Dad, laying there. He couldn’t be the excuse anymore. We’d taken a turn and we were heading down a new road. “Okay,” she sighed and gave a resigned “Thank you.”
“By the way,” she continued. “Dr. B, the neurologist, will be by tomorrow morning at 10 and we have a meeting with him.” He hadn’t shown up but was somehow aware of what was happening. Dr. R had apparently spoken with him. A meeting sounded good to me but it also sounded serious, like we should prepare for bad news. What was he going to say? Mom also mentioned that Gary told her Dad was due to have an EEG of his brain waves and a lumbar puncture, also known as a spinal tap. The spinal tap sounded awful to me. “I don’t like it either, Artie but they’re trying to see if it’s an infection or maybe something else. They can tell from the fluid,” she said. Plus, they still needed to get a two good CT scans so they could see if there were any changes happening in his brain. They’d compare one image against the other. How was Dad going to handle all that? Up until now, Dad hadn’t been able to complete one scan. And what did something else mean?
“Oh and there’s one other thing,” Mom said. “They’re moving Jack across the hall into a shared room tonight.” The reason? “Another man on the floor passed away this afternoon and they need to wheel his body into this private room so that family can have some time alone with him.”
Just then the sound of a music box lullaby came over the PA speakers.
It was the Brahms Lullaby (the one that goes lullaby and goodnight, da da da daah, da da daah)! Annie beamed: “Oh, that means a baby has just been born somewhere in the hospital. It’s so great that they play that.”
We all drew a breath. The thought of a newborn somewhere in the same building made me smile. I pictured it cuddling next to its mother. I wished for it a life as enriched and full of accomplishment and love as had been my father’s. And I smiled some more. Then I looked over at Dad– asleep, gaunt and sickly, rigid with his head tilted back, mouth wide open and the IV dripping nourishment into his veins. He was about as helpless and vulnerable as that baby.
Life was dancing simultaneously with death. And then there was the foggy space between in which I stood. One day at a time. I was exhausted. As the music ended, I fell into a chair and started to weep.
I’ll have more later. Thanks for reading. Be well.
I feel this with my son. He has Huntingtons Disease. A truly dreadful disease of the brain. In medical situations I.e hospital etc, it’s like gold dust to find a healthcare professional who hasn’t only “heard of it”. It’s so much more difficult when people don’t even know the first thing about it. Explaining the same things over and over again while falling to bits inside, talking about my son and this vilest disease in such a matter of fact way.
I def lived that w my late husband, during his cancer battle. Often it felt like me against the medical community. It was hard on its own, harder facing that seemingly always-uphill climb.
Arthur – you and I are living the same life!
Dear Mr. Roser, Can I buy this in Book form? Is there a place where this can be purchased i.e. Amazon, etc…?