This is last part 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, part nine, and part ten.
I was helping mom where she couldn’t help herself. Though the Sears was not a quarter mile from her house, she had lived with a busted washer and dryer for years. Now with Dad in the hospital, unable to intervene and after Johnny and I had spent an afternoon moving all his crap in the basement out of the way, she didn’t have an excuse to not pull the trigger. Plus, I was driving her there. I told her we were going to Sears and she was held captive in the car. Still, she wasn’t complaining. She was thankful, almost like she needed someone else to make the decision for her, to create the spark.
We waked the aisles of machines. It didn’t matter which one had the best features, which ones were attractively priced. What mattered was which ones could fit through the narrow opening Johnny and I had carved through the mountain of crap in the basement. There was only so much width in that chasm and only so much maneuverability once the machines we’re in place. Space was that tight. I brought a measuring tape and we found a pair. One pair. They just barely would fit. Mom pulled out the cash. She never paid with a credit card. There was something about credit cards that worried her. Cash was the good, old-fashioned way of doing business; getting it settled right then and there. A delivery time was set. Within a week, she’d be able to do laundry like a person in the 21st century.
We got home to find Annie fixing dinner. Mom wasn’t used to not providing for us. She tried to busy herself in the kitchen. Annie shooed her away. Annie was nice about it but we could tell mom was uncomfortable. I sat her down in the living room. “Mom, why don’t we come up with some questions for the neurologist tomorrow?”, I said. I had my information from the Internet that I’d printed. And I knew Johnny would have a host of questions, some pertinent and some probably completely off base, as Johnny might let emotions get the best of him. Mom had already beat me to the punch and showed me her list, much of which had to do with dad’s health history and the medications he had been taking. We wanted to know the same things, beginning with the obvious; does anybody’s around here know what’s happening to Dad? Followed by the next obvious question in the back of everyone’s mind that none of us could ask directly; “Is this the beginning of the end?”
It was too painful to dance around and we gathered around the table to eat; the family, minus one. I brought up the plumbing contractors, told mom I’d already made some inquiries and planned to make more calls in the morning. “Let’s just see what can be done, mom,” I said. Mom started to sigh, to resign to have to talk about more stuff she didn’t want to discuss. We all convinced her that the bathrooms needed to be repaired, brought up to some decency. If and when Dad ever came home again, he’d need to have a place to live that didn’t create more of struggle for him than what he was already experiencing. And Mom deserved the same. Why make things more difficult than they already might be? What if they needed a visiting nurse? That person would need to negotiate through the house to get whatever the two of them needed. Now more than ever, people needed efficiency. I was shocked when mom told us that Dad had already researched plumbers and had a list of names that he felt he’d be comfortable with. “Where’s the list!?,” I said eagerly. After dinner, she unearthed the names. Annie, Johnny and I looked at each other. If they’d selected the names, why hadn’t they at least called them to come give estimates? We could only guess it was because they were embarrassed to have anybody see the condition of the house. It was the old Catch 22 syndrome. I asked as long as we’re looking at contractors, how about we get some people to come look at the front stoop too? I said, “Mom, I’ll make the calls and schedule the appointments. You can concentrate on being with Dad.” Mom didn’t fight. She was tired. We all were exhausted. But I was pumped up. In the morning, I’d be on the phone.
The next morning, I finished calling contractors from the hotel room. It was 9:00, right as they opened. I wanted to be their first customer. I told them to prepare themselves. My parents needed to have the upstairs bathroom retiled or have a new, complete tub surround unit installed. The tub drain and sinks needed to be unclogged. It was an older house, with cast iron plumbing, some of the pipes making 90-degree turns. It would be hard to snake. They would need to replace the toilets with raised seats and stability bars mounted on the walls. The downstairs bathroom needed a new sink and toilet, plus new linoleum. The old linoleum was blackened with the grime of footprints and urine. I needed to know how they guarantee their work and wanted references. In my head, I had a figure of about $25,000 minimum for this work. I had no idea, I just thought that would be the sticker price. Did my parents have the money? I wasn’t sure what their finances were. We’d never discussed any of this stuff. Was that one of the reasons they’d never called to get estimates in the first place? I didn’t think so. Four plumbers agreed to come by; two that afternoon and another two, the next day. I would come home from the hospital to greet them. The concrete stoop contractors would come in the following days. Stuff was getting done at last.
I arrived at the hospital just before 10:00, our scheduled meeting time with Dr. R, Mom and Dad’s family physician and Dr. B, the hospital neurologist. When I got to Dad’s room, the door was shut. I heard Mom call me from across the hall, “We’re in here, Artie.” Dad was now in a shared room. His roommate had the window bed. Dad was by the hallway. He was awake. You could tell he was awake before you entered the room because you could hear him. He was yelling.
This wasn’t the type of yelling that a hard-of-hearing person does to make himself heard, or to hear himself. This was full throttle anger, something I wasn’t used to from him. I passed the hallway window and saw Annie there on her cell phone, talking to het husband. She saw me and gave me a look, a warning. “Dad threw me out of the room,” she said. “What? He threw you out? Why?,” I asked. “He just got upset and told me to leave. He screamed at me to leave.” She just shrugged. She didn’t seem overly bothered by it, which at first struck me. Then I remembered that Annie teaches kindergarten. She’s used to dealing with little kids acting out, screaming and making demands of her. But whereas in a classroom, she can exercise some control over the situation, here she clearly could not and had either just done what he said, without asking or been so fed up that she just left.
When I entered the room, Mom was trying to calm him down. He was complaining about not being fed or being able to drink water. His mouth was dry. Besides the prednisone bag, which was a giving him nutrition into his veins and his IV of fluids, they had given him a cup of thickened water to drink from his lips. To me, this resembled a movie prop. It was there just for show, to allow him to feel like he was drinking something, like he could do something for himself. It was that, of course. But it was thick, syrupy water, made so that it couldn’t go down his esophagus too fast, causing him to asphyxiate or get into his lungs. He recognized it as not being real water and for him, this representing something suspicious and not in a good way. As I walked in, he turned his attention to me. “They’re trying to poison me, Artie!”
He wasn’t yelling anymore. It’s as if I had some calming effect. Maybe he thought I could stop the so-called poisoning. I tried to say hello and hug him. I wanted to steer him onto a more positive topic. He obliged for a second, but went right back into his diatribe about being poisoned and not trusting anyone at the hospital. He didn’t know why he was there. Why was he not allowed to eat or drink. Why was he moved into a different room. Why the nurses were inflicting pain on him. We tried to explain to him that they were afraid he couldn’t swallow water so they gave him thickened water and he had a special bag of nutrition. We couldn’t tell him the real reason he’d been moved into another room. Across the hall, in his old room, a family was gathering around a man who’d passed away. They needed privacy. Now Dad and his family were gathered around half a room while his roommate and family were on the other side of the curtain, listening to Dad loudly complain about the staff and rambling about other nonsense. Then I glanced around the room. There were assorted styrofoam cups on his tray, countertop and bedside. Some had regular water, some had thickened fluid. Each one was marked with dots.
Mom shook her head. He was marking everything in code, sure he was staying one step ahead of the hospital, the tyrants who were out to destroy him. Some of the cups were okay and some weren’t. “See that cup there?”, he pointed. “Make sure that’s got a dot on it.” I told him it did. In fact, it had about five dots. “Now bring me a fresh water.” When I went to fill a cup from the faucet, he protested. “No!!!! Not from here!!! Bring one from home!” He wanted me to leave, go back to his house and bring water. I told him I wanted to stay with him. Then he got annoyed with me, raising his voice. I could see the family on the other side of the curtain get impatient.
Just as I thought something might blow the powder keg, in walked a tall blonde doctor, who introduced himself as Dr. B, the neurologist. He quickly turned his attention to Dad. “Jack….Mr. Roeser, how are you this morning?” “Not good,” Dad replied. Then he started talking about water and dots and about being held against his will. He complained about this and that and the other and peppered the dialog with more talk about dots. Dr. B asked Dad if he could count backwards from 100. Dad said he could. “Of course I can but first I have to put a dot…..” Dr. B tried to get him to focus. See if you can count for me. Dad kept mentioning dots and bad water. Dr. B asked him if he knew where he was, what the name of the hospital was. He asked Dad if he knew the names of his family. Dad could identify us, which was a relief, but he’d go right back to the dots. Dad complained about the hospital, said he’d seen someone come by in the middle of the night and try to do something to him. He thought they were coming to take him to the morgue again. It was a clown that he saw. The clown was hovering over him, laughing, fiddling with his IVs. The clown was injecting something bad. Dad couldn’t get the clown to go away. Dr. B didn’t acknowledge the story. He was trying to gauge Dad’s cognitive capacity. When Dr. B asked him more questions, Dad told him to get out. “You don’t care about me, you’re just like everyone else. Get the hell out of here!” Dr. B calmly replied; “You want me to leave? Okay,” then motioned us to follow him into the hall.
Dr. B seemed like a nice guy but he didn’t understand that for Dad to see us all leave with a doctor would only make him more paranoid. Or maybe he did know but felt it wasn’t important. I asked if we could talk within eyesight of Dad and Dr. B obliged. I told Dad, “I’m going to find out what this guy has to say for himself and I’ll let you know, Dad,” I said. “We’ll get to the bottom of this.” Dr B. seemed to sense what I was up to and gave me a nod. We stood in the doorway. I made sure to look over at Dad and give him a smile and a wink once in awhile, in an attempt to let him know that we weren’t conspiring against him.
Just then, Dr. R arrived. He was my parent’s GP. I’d met him before and found him very pleasant. He never called my parents by their first name. “Hello, Mr. Roeser,” he said as he entered the room and proceeded to take Dad’s vitals and read his chart. Dr. B and Dr. R didn’t confer on anything. Dr. B began a recitation on delirium and dementia. He said they were trying to determine what exactly the diagnosis was. “It’s extremely possible that he has small blood clots that won’t show up on an MRI,” he said. That might explain a stroke. They were going to order a spinal tap to rule out infection and see if that gave any clues. Dr. B said that Dad had classic waxing and waning symptoms of delirium but it was progressing rapidly, indicating a dementia. It could be the onset of Alzheimer’s, Lewy Bodies or Parkinsons. Or it could be any combination of things. It was all very mysterious. The only way they’d be sure what Dad had would be after they performed an autopsy. I thought to myself, well, that’s kid of late, isn’t it?
Johnny didn’t like it either and he started ranting, which only aggravated Dad even more. Dad started commanding us to do things; to put dots on the water glasses, to bring him food from home, to find assorted tools, etc, etc. He kept repeating his demands. Finally, Johnny marched in and told Dad to be quiet, “No! I won’t do any of this for you! I’m not going to enable your illness anymore! You need to stop this to get well.” Dad kicked Johnny out, “You’re nothing but a pain to me, going on and on. You’ve done nothing but fail me.” Ouch, some old wounds resurfacing. Johnny stormed up to the doctors; “You’re not addressing the problem,” Johnny said, with steam coming out of his ears. “He’s not getting nutrition and he’s isolated. Of course he’s hallucinating.” The doctors tried to explain this dilemma we were in. Yet another Catch 22. Dad couldn’t swallow, therefore no solid food, no runny liquids. Because of his stomach lymphoma, they couldn’t give him this medicine or that treatment. He was too weak to do things the easy way. They would try and manage symptoms and hope he slowly comes around while they find the right road. That wasn’t good enough for Johnny and he stormed out. Typical, short fuse behavior from him. I didn’t try to bring him back. My focus was on the doctors as long as we had them.
I asked Dr. B how we should handle Dad. Would we be slowing the process down by humoring him and going along with his demands, with his logic, if you will. Dr. B said it really didn’t matter. Dad was off on his own, delirious. “You can go with it or chose to ignore it,” he said. Dr. R said he was going to prescribe Heparin for any blood clots and Haldol to treat the hallucinations, and see how it goes until they got lab reports back from a spinal tap. In the meantime, his nutrition would continue from the parenteral bag and we should keep his mouth refreshed by swabbing, keep his hearing aids and glasses on him as much as was tolerable. We should do our best to keep him in reality but that may be fleeting. “There’s going to be patterns,” said Dr. B. “There will be moments of clarity and moments when he’s out there. This irritability is expected. Don’t let it get to you. Let it roll off your back. Eventually he’ll probably tire out and sleep. This is known as sundowning. Beyond that, we’re on top of it. I’ll be back tomorrow.” Then he looked directly at me, as if he sensed I was the family member in charge; “Okay with you, boss?” I nodded and shook his hand. What else was I going to do. It’s seemed like we were in a lifeboat without paddles.
Dr. B left and Dr. R kept fiddling with Dad. “Mr. Roeser, do you know who I am?” Dad recited his name. “Do you know where you are?” Dad answered correctly, then started complaining about how he was treated and about the correct placement of dots. Then Dr. R started asking him other questions to measure his cognitive ability. Dad got irritated. “Why is everybody asking me to count backwards? So, I can’t count backwards! But I can recite the Gettysburg Address! Can you do that?” Dr. R laughed, “No, I can’t say that I can do that.” Then Dad began; “Four score and seven years ago, our founding fathers brought forth….” Then he recited Casey at the Bat and sang some campfire songs. Dr. R watched and when Dad finished, he told his old friend, the good doctor to get out! As Dr. R left, Dad called out; “I appreciate you taking such good care of me.” I didn’t know if Dad was being sarcastic or not, in his state. It seemed mater-of-fact. Dr. R peered back in the room; “And I appreciate being able to take care of you too. I’ll see you soon.” Dr. R gave Mom a peck on the cheek, “I’ll be in touch.” Then he left.
I had to get back to the house to welcome a couple plumbers inside. I told Dad that everything was going to be okay, that the doctors were on top of it. I told him I’d bring him fresh water and food. He seemed pleased. Then I very hesitantly said, “I have to go back to the house because there are plumbers coming to give estimates on repairing your shower, sinks and toilets.” I expected a fuss from him, perhaps a fight and then agreement from Mom as she might jump on the pile, attempting to keep the plumbers from coming. But Dad looked back at me, took a moment, seemed to process what I was saying. I repeated it, “Dad, we’re getting your bathrooms fixed. We all watched him, on edge. Finally… “Good!”, he said. “It’s about time!” I looked over at Mom and smiled. What was there to say about that? This dynamic the two of them had all these years, of blaming each other for what didn’t get done. I was glad to be chipping away at it. Then I said to Dad; “Mom bought a new washer and dryer last night. And it’s being delivered next week!” Dad processed; ‘Good! It’s about time, she needs it.” I kissed Dad and looked over at mom as I left, gave her hair a compassionate stroke. “See? That was pretty easy,” I whispered. It was great knowing that deep down, Dad trusted me. As I walked out, Dad got his two cents in and said, “If you moved anything in the basement be sure and put it back where you found it.” I nodded and thought to myself; yeah right, like anybody would know the difference. Then again Dad might, if he ever got well and came home. Then a wave of sadness overcame me.
I needed to get back to the house to prepare the bathrooms, clean and move whatever I could so they didn’t look too much like trailer-trash material. I would write down all that needed to be done and give copies to each contractor. That would take some time. And who knew, maybe I’d see Johnny and try to ease his mind a little. So I left. “Call me if you need me,” I told Mom and Annie and I blew a kiss to Dad. “Okay,” he said. Meanwhile, the family next door kept looking over, peering around the curtain, like Toto eavesdropping on the Wizard. The whole affair was strange. No Dorothy, we’re not in Kansas anymore.
Thanks for reading and take care.
So many similarities. Thanks for sharing with us
Oh wow. Thought I was the only one dealing with obstinate parents, one of wh is a hoarder. Thank you for sharing such a personal account and hope that things work out.
Thank you for sharing this personal story. I’m sure there are many people that can relate.
Your story is well-written, and there are many similarities to my parents’ situation. Some of the things my dad has said in delirium (and compulsive talking) are very much like what your dad said (he thinks he died three times, or that my mom died, fixations on numbers and scientific terminology). Mine is 91 now, and my parents moved to “independent living” (where you have to go when you’re no longer independent) a few months ago. I hope to read more of your story.