Preparing for the gathering storm

Preparing for the gathering storm

This is last part of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part fourpart fivepart sixpart sevenpart eightpart 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.




When caregiving feels like dad and me vs. the hospital

When caregiving feels like dad and me vs. the hospital

This is part ten of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part fourpart fivepart sixpart sevenpart 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. 

Another minefield.

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 were-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.

Why does progress always feel painfully slow?

Why does progress always feel painfully slow?

This is part nine of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part fourpart fivepart sixpart seven, and part eight.

Johnny was at the house. He had calmed down, thank goodness, but was still upset about the lack of headway at the hospital.

“Let’s do something then!  Let’s go buy some cleaners and clean the kitchen and bathroom floor while they wait for something to happen at the hospital,” I said. He was all up for it— he could channel his frustrations toward dirt and grime.  Together, we would make this kitchen and bathroom right, the way it ought to be, the way that good people deserved to have it be.  I think for both of us, anger was a driving force in our determination to clean up.  For years we had tried and tried to get our parents to act on things and they kept refusing, insisting they didn’t like to be told what to do and making excuses.  Now we were changing the game.  We were opportunists.

It was that bad.  The kitchen linoleum was dark and crusty with long-hardened dribbles of spilled food. The powder room floor was stained with dirt and urine.  Johnny and I got on our hands and knees and went inch by inch over the entire area, scrubbing by hand with hard, plastic bristle brushes caked with Comet cleaner and then mopping with Mr. Clean and drying.  We moved all the tables and chairs in and out.  We moved all the appliances.  The floor under the fridge and the wall behind it were dark with mold.

But after several hours, the place was spotless.

Now, I have had knee problems for years and have had two knee surgeries.  I am convinced that the afternoon I spent scrubbing the floor has contributed to my current, debilitating knee pain and, what will soon be, my third knee surgery. Not to mention the sudden occurrence of shoulder and elbow tendinitis.  This the price one pays to get things done, to get some satisfactionBut it felt so good to be able to do this.  We were so proud of ourselves.

I think it was then my family realized, and accepted, that I was going be the one taking charge.

Johnny didn’t have the self confidence– he didn’t trust himself.  He still beats himself up for having had a mental illness, which is too bad because he more or less gave up on himself. Annie is the oldest but she’s still the little girl, unable to spread her wings and be the full, mature, capable adult who can make decisions in front of my parents.

“I still feel like a child whenever I come visit,” she once confided to me.

I had shown mom and dad that I was a little bit different– I could negotiate through politics and get things done.  They had actually begun to respect that.  Better late than never.

A year ago, I had come to an impasse with their clogged kitchen sink. 

It had been stopped up for months and mom had to run water into a basin in order to wash dishes, then dump the basin water outside or down the toilet.  It was ridiculous.  Dad wouldn’t call a plumber and for some reason wasn’t able to successfully snake the drain.  So why not call the plumber then?  Because dad thought he could solve the problem himself by dreaming up some ingenious alternative way of removing a clog.  He just never got around to it.  Fed up, I visited them and brought my electric drill and a $20 snake I bought at the hardware store. 

“Hi,” I said when I walked in the door, and after a quick hug, I marched down into the basement with my drill and snake.  “I’m going to fix your drain.”  Predictably, they tried to protest but I didn’t even give them a chance.  I just moved right past them, found and put on an old pair of coveralls.  I looked like Mr. Green Jeans from the old Captain Kangaroo TV show.  I unplugged the cast iron pipe and wailed away at the clog with the snake.  It wasn’t too difficult to get the clog removed, it just took some muscle and a little time. But then jet black, slimy water suddenly came gushing out and splashed all over my coveralls, got into my eyes and mouth.  It was everywhere.  I gagged as I fetched a bucket and collected the remaining black tide.  I was a mess.  Now I looked like Mr. Green Jeans meets the Creature from the Black Lagoon and there was black slime all over the basement floor.  But I didn’t care.  I had fixed the problem and it was so satisfying.  I gave them their sink back.  Mom could now wash dishes like a normal human being. 

I gave mom some relief.  I’d made her life easier.  I was able to help.  What a gift that was! 

“You saved me Artie,” dad said.  Yes, I did.

When we returned to the hospital that evening, dad was asleep.  He had been taken back for another CT scan and had been given Ativan to relieve any anxiety.  Regardless, he had woken up midway through the scan and been agitated so they couldn’t get a complete test. He would have to go back tomorrow and mom was told that his GP would make his rounds in the morning.  The neurologist would be available then too, as well as the speech therapist.

In the meantime, a feeding tube was discussed.

We determined that there was no way dad would accept it without a fight.  It seemed like a harsh and undignified thing to do to him.  Plus, there was the real chance that it could harm his stomach, where he had battled a lymphoma recently.  The risk of scarring, or an infection, was too great.  The parenteral nutrition bag was ordered so he could be fed intravenously.  He needed nutrition and he would get it through a PICC line inserted into his vein.  That was on its way.  The doctors had okay’d it but it was expensive and had to be approved by insurance.

This was another variable.  Dad’s insurance was through his former employer, which recently was cutting benefits for retirees.  We weren’t sure what would be covered and what wouldn’t be.  A decision was made that we would proceed with whatever needed to happen regardless of what insurance might cover and we’d figure it out later.  It was at this point that I realized I had an opening to start discussing my parent’s finances with mom, something she’d always held close to the vest.  But that would come later.  For now, we were making progress but it was painfully slow.


Yes, dad had dreams.  Too many of them. Before he went into the hospital he would sleep all day in his living room chair.

He once said to Johnny, “There’s so much I want to accomplish but the only time I seem to get anything done is when I sleep.”

Please be sure and check out my next post as we continue my journey.  Thank you for reading.  I hope you are all well and continue to stay well.

To be continued…

Caregiving: the memories, dreams and delirium

Caregiving: the memories, dreams and delirium

This is part eight of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part fourpart fivepart six, and part seven.

Dad was always a dreamer.

We had always lived amongst his dreams.  As an extremely handy craftsman and engineer, he had plans for his dream house.  And as a thrifty child of the Great Depression, he hoarded items that would help him design and create that dream.

But his dreams were our nightmare.

He made so many plans that he became too overwhelmed to get around to them.  Consequently, the house became cluttered and some basic home repairs never were attended to.  I suppose the perverse logic in his head went something like this: “Why should I bother fixing this little thing, like a clogged sink, when I’m going to be redoing the entire kitchen anyway?”  And since he felt he could do it all himself, why would he hire someone else to do it?  A contractor would never deliver to dad the quality that dad knew he could deliver himself.  So things were left undone and we all lived amongst the mess. 

Back in dad’s hospital room, we heard about his nightmares.

Dad was awake, sitting up and lucid.  That was great to see.  The night before was quite the opposite.  He was in desperate shape; vulnerable, frightened, sick.  I had left him alone in his room and to this day have never really forgiven myself for doing that.  He had been such a wonderful, loving, providing father and I felt I had been a bad son to leave him like that.  I don’t know what more I could’ve done except to be there by his side and listen to his delirious rabble.  But at least I’d have been there.

Now, the sun had risen and this was a new day.  When dad saw us there was no guilt, no regret.  He look over at us and seemed a little confused, like he was surprised that we would be showing up, but happy that we were there.  We approached tentatively, not knowing what to expect.

Mom sat beside him, trying to hide her tears.  “Jack, I’m happy to see you’re back,” she cooed.

Dad looked at her.  “I thought you were dead,” he said.  “They took me down to the morgue last night.  They tried to put me in a casket but I wouldn’t let them.  Then I came back to my room and saw you going by in a casket.  They were taking you away!”

We weren’t sure what we were hearing.  Dad was never one to exaggerate.  He was a precise guy, in every sense of the word.  Mom held his hand tighter.  He locked eyes with her and continued. “I saw your body being carried away.  I cried out to you but you were gone.  I thought I’d lost you.  Gin, what will I do when you’re gone?”

Dad called mom Gin as in Ginny.  Friends used to jokingly refer to them as “Jack and Gin,” which I always thought was funny since neither of them drank.  Growing up, our next door neighbors liked to have their evening cocktails. 

“Come on over and have a beer with us, Gin,” Ralph the neighbor would say.

“Ralph, you know I never drink beer on Tuesdays,” mom would reply. 

A few days later: “We’re making Manhattans, come on over!” 

“Ralph,” mom would say, “you know I never drink whiskey on Thursdays.” 

Dad laughed, “One of these days he’s going to figure out you don’t drink anything on any day.”

Now dad wasn’t joking. “I want to be the one to die first.  I want it to be me.  But I’m not ready yet.”  He started to cycle back in thought.  “But they took me to the morgue anyway.  I was there last night.  They brought me down there.  I was freezing.  They were trying to get me in a casket but I wouldn’t let them.”

I was very naive.  At the time, I reasoned that this strange, cycling pattern of dialog was due to a stroke because his brain was clotted and misfiring and he was confused.  And I had what I thought was some solid evidence in that dad had told me last night that half of his brain felt numb and we could see that half his face and one eye appeared to be drooping.

“Oh Jack, I don’t like it when you talk like that about death,” mom said.  “How horrible you must’ve felt.”

(Yes, and I wasn’t there to help ease his pain, to shoulder some of his fears.  How horrible I felt).

Mom asked if he was hungry.  “Yes and my mouth is dry as a bone,” he said.  Johnny went to fetch a nurse to see if we could get some food and water.  We were also keen to tell someone about the stroke theory in the hope that treatment and healing could begin.  A nurse practitioner came in and gave us the lowdown, while dad watched.  He eyed her suspiciously.  I knew he couldn’t hear her clearly, given that his hearing aids were out.  She began to talk to us and he interrupted, “They took me downstairs to the morgue!  Can I please have some water?  I’m parched.”  She said there would be water after he was reevaluated by the speech therapist, who would determine whether or not he could handle swallowing.  She’d seen him earlier and had ruled it out.  We asked when the speech therapist would be there.  Since it was the weekend, it might not be until later because she works a half shift and moves throughout the whole hospital.

Caregiving-Dreams-and-Delirium-2-300x199This would be a recurring source of frustration.

We would begin to continually rely on the advice and consent of doctors who were operating on a very different schedule and set of priorities than us and mostly, were nowhere to be found.

We told her that dad hadn’t eaten in two days.  She offered these little pink sponge swabs that we could dip into water and moisten dad’s teeth, gums and lips until we got clearance from the speech therapist.  The swabs looked like pink tootsie pops.  We coated dad’s mouth with pink, waterlogged sponges and he calmed down.  It was a crude way to give him comfort but looked like he was in heaven.  The little things can go a long way.

While Annie rubbed dad’s mouth, we told the NP our story of how dad said he felt one side of his body was hot and the other cold and that he’d fallen night before being admitted to the hospital.  We reasoned that must’ve had a stroke and treatment should be administered immediately so he doesn’t suffer brain damage.  I didn’t have any deep knowledge of strokes but I knew that every minute counted and the clock was ticking.  But our NP refuted the stroke theory.

For one thing, dad didn’t exhibit many of the telltale signs of a stroke, like a headache.  And also, she said that a person wouldn’t be able to tell accurately which side is hot and which side is cold because the brain’s hemispheres reference opposite sides of the body.  In other words, dad couldn’t be able to tell us what was hot or cold accurately because the left side of the brain controls the right side of the body.  So what dad was saying didn’t make clinical sense.  Besides, she said, they had brought him down early in the morning for another try at the CT scan to see anything unusual about his brain.  They were looking for clots that might have caused a stroke and they had given him Heparin in case there were some small blood clots that might now show up on an MRI.  They were on the case.

But she seemed to be headed towards a different diagnosis.

We told her that dad said he was taken to the morgue and screamed and yelled.  She explained that he was not in the morgue but had been taken to the scan lab in the wee hours of the morning and he complained and wrestled about so much that they couldn’t get him to be still for an image, so another session should be ordered and they would sedate him to calm him down.  But before that could happen, his family physician had to order that in consult with the neurologist.  Okay, now we were waiting for the speech therapist, dad’s personal physician and a neurologist.  That’s three people and so far we were 0 for 3 with the clock ticking away.

“We just don’t know what’s going on yet but we are taking the steps to find out,” she said.  “It might be a delirium.  That would explain some of his behavior and his fixated train of thought,” she said.  “Everyone is on board.  We have a team.  It’s just that on the weekend, the team isn’t available on site all the time but they have all been notified.  We’re taking care of him.”

Delirium.  It was now a clinical word to me.  I made a note to myself.  As soon as I got home I would look that up.

There had been no real progress since the day before, when mom had first brought dad in.  We were still waiting for clarity, for a path to walk down.  Johnny started getting agitated.  I saw him beginning to boil.  This was not a good scenario for him and we all were nervous.  Dad could see it too, even in his state and mom was trying to keep dad from seeing it because it would only upset him to see his oldest son lose it.

“How can you say you’re taking care of him when you won’t even let him eat?!” he pleaded.   “Of course he’s delirious.  He’s suffering from malnutrition!  You’re just going to let him lay here and suffer while we wait for these doctors to take their sweet time?”

Mom tried to play peacemaker.  Dad went back to enjoying his gum bath from the pink tootsie roll Annie had in his mouth.  I remained quiet.

I had seen this from Johnny before and it’s something that always frightened me.  In his late teens, Johnny had been diagnosed with mild schizophrenia.  He is 13 years older than me so by the time I really started to get to know him, he was already in high school.  He had a brilliant mind, played chess, was inventively funny, wrote poetry, loved Bob Dylan and was a voracious reader, particularly of Arthur Conan Doyle’s Sherlock Holmes mysteries (he liked the intricacies of Holmes’ deductions) as well as all of J.R.R. Tolkien’s Hobbit series and some books about the powers of shamans, spirituality and mind-altering drugs by a new author named Carlos Castaneda.  It was the late 60’s, Johnny was a star center for the high school basketball team, an A student and had a bright future, but he started dropping out.  Friends got drafted and sent over to Vietnam.  Some didn’t come back.  Some came back in pieces.  Tom, one of Johnny’s best friends from across the street, came back with half a body, paralyzed and in a wheelchair.  His mom starting to drink, heavily.  Other moms had worries too.  My mom was there for them in their time of need but she never wavered in her outspokenness against the war.  She secretly made plans to send Johnny to Canada if his draft number ever came up.  “No son of mine is going to go off to war and kill people,” she would say.  You can imagine how this rattled some of the neighbors.

It was a crazy, confusing time.

While others drank heavily, Johnny took to drugs, particularly LSD.  He started to underperform in school.  “If I do well it only makes the teachers look good,” he would say.  Some logic.  Then he started going into darker places.  I would sometimes walk into a room and find him yelling at the walls, at inanimate objects, at thin air.  He would have conversations with himself.  He was angry a lot.  “Nobody’s going to burn!!” I heard him scream at no one in particular.  He would attack a lamp, send it hurtling and crashing across the room, then storm away, with teeth gritting.  I would sometimes hear cries, screams and the sound of things being broken from behind his bedroom door.  I was something like six years old at the time.  I eventually tried to avoid him whenever I could.  I was scared of him.  Mom would instruct me to not do this or don’t say that because it might set him off on some, weird, dark path.

It was as if I would somehow cause harm to him because I was just being a kid.  I found myself hanging out a lot at our neighbors house, away from the rage.

I had no idea.  Neither did my parents.  So when they found Johnny bleeding after trying to stab himself, it was left to doctors to try and figure it out.  Johnny was eventually given electroshock therapy.  Around 1969 and 70, this must’ve been a particularly barbaric practice.  It was mom who would go see him in the ward.  Mom had meetings with doctors.  She saw her son doped up and docile.  She wondered what would become of him.  These doctors were not the most compassionate people.  When she asked one doctor what was going on with Johnny, he replied something to the effect of: “When I hear somebody ask a question like that, I hear someone who wouldn’t know what to do with that information anyway.”  In other words, since we’re a lot smarter than you, just mind your own business while we do our work, while we do whatever we want to your son, lady.

Mom was just being a good mom and she was overwhelmed and didn’t understand what was happening to her son. Naturally, she tried to keep it a secret from me.  I was just a little kid.  A few years later, Johnny would again try and commit suicide by taking some kind of pills, after he had a hard breakup with a woman he loved too much.  Johnny is better now, attends therapy and is on meds, but he still gets angry at the drop of the temperature.  Growing up in my house was like walking in a minefield.  I learned how to survive mostly by keeping quiet and treading lightly.

Caregiving - Dreams and Delirium 4In many ways, the minefield still exists, except that now I know where the mines are and that most of them are duds.

To avoid disturbing dad, the NP and Johnny went outside the room and talked.  I didn’t know what to do.  I was afraid Johnny might say something stupid or threatening to the NP.  I thought it was important that everybody harvest positive energy and channel it toward dad so he could recover.  We also needed the medical people on our side and we were early in the game to start rubbing people the wrong way.

After a short while I went outside to join their conversation only to find that Johnny had left the hospital in a huff.  He’d gotten fed up and left and the day was only getting started.

I walked back into the room, not knowing where I was needed more. Should I stay here to try and help dad? Be there for mom and Annie? Have a conversation with any doctor that might come ambling by? Or should I go find Johnny and try to save him?

I’d been quiet a lot in that house growing up.  Now was not the time for quiet.

Before I could make a decision, Pastor Sandra arrived.  Sandra said hello and hugged us.  She gave me a special nod, indicating that she remembered our conversation.  After she spoke with dad and made small talk, she leaned over to mom. “Ginny, we just want to be sure you’re getting all the help you need.”  Sandra glanced over to me.  I nodded back.  I knew where she was headed and it was a good thing.  “If you need something, like somebody to help you out cleaning the house or getting things done while you’re here with Jack, just let us know.”  Mom was accepting of her concern, which I totally plotted.

I said to the room, “I’ll go get Johnny and we’ll clean your kitchen and powder room floor mom, while we wait to hear from the doctor.”

Mom tried her usual end-around. “Oh no, you don’t need to do that, Artie.  I’ll do it.”  I’d heard this for years.  Why would she start cleaning now?  Annie rolled her eyes, hopeful that I wouldn’t give in.

I said, “Mom, I’m here and I can get it done.  I’ll head home to work on it and you call me if one of the doctors shows up and I’ll come right back.”  The hospital was only a 15 minute drive from their house.

I looked at Sandra and gave her the cue.  “Ginny, I think it’d be good for your sons to keep busy and help you clean up while you and Annie stay here,”  Sandra said.  Then Mom agreed.  My green light appeared and I left.

At least something would get done today.

To be continued…

The hospital’s rules vs. the caregiver’s expectations

The hospital’s rules vs. the caregiver’s expectations

This is part seven of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part fourpart five, and part six.

The next day, I woke determined to get answers.  A text message from Jen said she’d visited the statue and said a prayer at the oldest synagogue in Europe, in the Jewish Quarter in Old Town Prague.  Loni, a co-worker, was also praying.  Her father was in Milwaukee battling cancer, and losing.  Sadly, for him it sounded like just a matter of time.  Loni was praying for two dads now.

There was a swelling of support in my corner.

But I could use a little protection myself. I was curious about this magical Czech Saint*, Saint John, Jen had told me about.  I compared Saint John with my father.  Like him, my dad was a decent, honest, honorable man, who never spoke ill of or sold out anybody, as far as I knew.  He was generous and cared about others.  He was of high moral character, a straight arrow, a hard-working craftsman who strove to do good work in his every endeavor.  Now he was going through his own personal torture.  He deserved a protector, someone to watch out for him.  If I was unable to provide him this, perhaps the good Saint John would.  I needed all the help I could get.

I felt hope, empowered by the karma.  I wanted to get to the hospital as early as possible to meet the doctors as they made their rounds.  Together, we would all build a consensus on what’s wrong and what can be done about it.

But I quickly learned that hospitals abide by their own set of rules and not at all in tune with my expectations.

When we got there, dad wasn’t what we expected him to be either.  He was worse.

Catatonic, rigid, mouth and eyes wide open.  He was unresponsive but breathing.  We each leaned in.

“Dad, it’s me!  Can you hear me?”

“Honey,” mom said.  “Jack, I’m back.  Are you here with me?”

It was terrifying.  She kissed him and sat beside him.  What was going on?  What had his night been like?  The guilt rushed over me.  Maybe if I’d spent the night with him, he might not have ended up like this. I was beating myself up.  We struggled to find someone on the floor.  There wasn’t a nurse in sight.  Johnny arrived and when he saw dad in his state and nobody around on call, he started to flip out.  Now we had two unhealthy people on our hands and the day was just starting.  He stormed off in a huff.   Annie just shrugged.  She’d seen this before.  Mom just bowed her head, looking for strength.  I told her all about Saint John and that Jen had promised to visit the statue, that Jen was going to pray for dad at the synagogue.

“Mom, a lot of people are thinking about us, are praying for us,” I said.  She held my hand.

Finally the shift’s head nurse came around with Johnny in tow.  He had obviously made an impression because she arrived flustered and armed with information, though none of it very clear.  The hospital doctor had come to see dad after we’d left.  They took him downstairs to do X-ray and now they were waiting the results, which would be read by the doctor, then charted. Everything was a process.  Until someone of authority saw the results of a procedure and made a judgment, it was as if it never happened.  The doctor wanted to try again for an MRI but the MRI suite wouldn’t be available for another couple days.  They talked about a cat scan to see if there were blood clots in his brain.  But it was Saturday.  Nothing much happens on the weekends.  The speech therapist would have to evaluate him before he could swallow any food.  She might come around today and if not, then Monday.

“He hasn’t eaten in over two days.”

In the meantime, the doctor had ordered a nutrient bag with a pike.  This, in addition to IVs, was all he was getting.  The next step might be a feeding tube.  We told the nurse about our “right side hot and left side cold” story and that we thought dad was telling us he’d fell and had suffered a stroke.  She just looked at us.  “I’ll make a note so the doctor will see it,” she said.  And then she left.

I learned something that day: if you want to be ignored in a hospital, get hurt on a weekend.

We spent the entire day watching dad lay there.  We’d speak to him.  “Dad, it’s Saturday,” and “Dad, we’re all here.”  Mom would sit and hold his hand.  She’d talk to him and once in awhile feel him give a little squeeze back.  He was acknowledging her.  He knew we were there.  We’d look into his eyes.  I believe he could see us.  Occasionally, there was a twinkle of recognition in his eyes but he couldn’t speak.  He’d let out a little grunt as if he was trying to talk.  You could see him try and concentrate to communicate.  He’d lock eyes with you, strain to make a noise or move.  His face would stiffen, like it was trying to generate the power to talk, then give a little jerk, as if a spark had been set off inside his brain, then it would let go and he’d drift back.

You could tell that there was life inside that shell, desperately trying to get out.

He was struggling but the machine inside him wasn’t firing right, the spark plugs were out of whack, the battery didn’t have enough juice, the computer didn’t have enough CPUs.  I tried to make sure he knew I was there, that I loved him, that I was determined to get him well.  I believe he was trying to let me know he knew and to tell me what he was going through, which might help. I had to leave the room several times because I didn’t want him to see me cry.

I didn’t want him to know I was feeling sorry for him.

Pastor Sandra, from my parents’ church, came to visit.  She seemed very warm and open to our needs.   She and mom talked and we prayed.  When she started to go, I followed her outside in the hall and took her aside.

“Sandra, can I talk to you a for a moment?” She was open to talking and I was desperate– then it all poured out. “I’m not trying to put any of our family’s problems on you but I need your help, if you can.  My parents think the world of you so maybe they’ll listen to you…”

The Hospital's Rules vs. the Caregiver's Expectations - Take it one step at a timeI proceeded to tell Sandra that for years we three kids had been begging them to get their affairs in order, to get a will and all the other things taken care of.  I told Sandra that they lived without a working sink, without a shower, that mom bathed out of an empty plastic ice cream container.  I explained their front stoop, how the concrete was crumbing and beckoning for someone to misstep and fall.  I told her that there was barely any place to sit or walk, about the boxes scattered on the floor, the couches, the bedrooms, boxes that lined the stair steps and that the stair railing was loose.  I told her the house was a mess, that they lived in borderline squalor.  I explained about the dirt and urine stains in the linoleum floors.  She winced.  I told her we had predicted that something bad would happen and now it had.  I didn’t know how this was going to play out but in any event, there was a lot that had to be done and they had just never confronted it.  She agreed to help.

The once-in-awhile odd sensation I used to get that this may be the last time I’d see and speak to my father, started to become routine.

We gathered at mom’s house and talked.  I can’t remember what we talked about.  I called Jen in Europe.  She told me about her day at the Charles Bridge and in the Old Jewish Quarter. I tried to get her to talk about work but she kept bringing it back to my situation. “Don’t be afraid to push the hospital,” she said.  I replied, “If only there was someone there I could push.”

The next day, I wasn’t so optimistic.  I had slept well though– mental exhaustion saw to that.  I replayed mom’s mantra: “Take it one day at a time.”  We all trudged back to the hospital, expecting the slow weekend routine and more questions without answers.

Walking down the hall, a nurse stopped us.

“Oh my god, you’re here! It’s like that movie Awakenings.  You know how he was so catatonic yesterday?  Last night he was like that too but early this morning, we walked in there and he was up.  He was talking and making sense.  He was cracking jokes.  I talked to him for about a half hour.  He’s alert.  He asked where you all were…” She was still in mid-story but we had hurried off to his room.  What I saw there put a smile on my face.  I closed my eyes, bowed and thanked the good Saint John of Neponuk, far away but so close.

*The story of Saint John of Neponuk is worth telling:  He became the Archbishop of Prague in the 1300’s.  When Wenceslaus, the King of Bohemia, suspected his wife of being unfaithful, he ordered John to divulge to him the intimate secrets from her confessions.  When the good bishop refused, the King tortured him and threw his body into the Vltava River from the Charles Bridge.  Legend has it that right after the incident, five stars appeared in the sky right above where his body lay on the riverbed, giving it an unusual, warm glow.  Because of his deeds and his martyrdom, Saint John is considered to be a protector of the city of Prague and to all who visit and touch his statue, which sits on the Charles Bridge, above the site where he perished.

To be continued…

Read part six of Notes from the Problem Child.
Caregiving, Without Answers

Caregiving, Without Answers

This is part six of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, part four, and part five.

When we returned home from visiting dad that night at the hospital, it was difficult to find words.  Composure and carefully constructed thoughts yielded to flurries of emotional outbursts and silence.

And the silence was deafening.

Mom had left the hospital early.  She’d been there all day, by dad’s bedside; watching him get poked and prodded, wetted and wiped and scream in pain whenever he was moved. She’d ask questions of staff members and not get clear answers.  She’d endured all of dad’s delirium and watching him sleep, unsure if he’d wake up well, the same as before, worse or not wake up at all.  When Annie, my sister, Johnny, my brother, and I arrived at her house, she’d long ago collapsed in her easy chair, exhausted, staring blindly ahead.

She already knew that this was only the beginning.

We hugged her but she was limp– wrung out like a spent washcloth. “Mom, what’s going on?  What did they say is wrong?”  She didn’t know.  Nurses had told her that they’d have to wait until the hospital wing doctor saw him and that wouldn’t be until the morning.  They’d have to wait and see until his family physician made his rounds, in a few days.  They’d have to wait and see until a neurologist saw him. They’d have to wait until one of the doctors ordered tests; an x-ray, an MRI, a cat scan, before they could ascertain what it was or how to proceed, before they could prescribe anything.  They’d have wait until the speech therapist evaluated whether or not he could swallow and therefore, eat or drink or take medicine orally. The last thing he had eaten was a turkey sandwich at home a couple days ago.

It was all happening so quickly.  Mom was throwing up her hands.  She likes being in control of things and now she wasn’t.  I was worried for her as much as I was for dad.  I was worried for all of us.

It was late. I kept seeing that image of dad cowering when we left the hospital.  He had pulled the covers up to his face.  He might have been crying.  He was frightened.  I should’ve sat down and reassured him, offered him comfort, like I had during the whole time I’d been there by his side.  I could’ve spent the night with him, rode out his fears with him.  But I was tired and afraid too.  And I would’ve just heard more of “the left side is blah-blah and the right side is blah-blah” babble.  I didn’t have any answers, only love and a warm stroke of his hand or his wiry hair to offer.  I wanted to be able to offer him protection.  Leaving him made me feel more guilt than I’ve ever felt.  It was the gut punch kind of pain you feel when you know you’ve succumbed to a greater force– the kind of force that brings you to your knees.

Caregiving, Without AnswersTo take my mind off things, I texted Jen, my wife (now more than ever, my strength and sounding board).  Jen was away on business in Prague.  I hadn’t told her anything yet.  For one thing, I didn’t know much.  Plus, I needed her to be on her game, to not have worry about something that was inconclusive and happening halfway around the world.  Most of all, she’d want to fly back and there was no need for that.  Perhaps I just didn’t want to explain a situation I couldn‘t explain.  Like so many difficult journeys  getting started is the hardest part.  It would be early morning there.  “Call me on my cell,” I wrote and hit send.  Within 5 minutes, my iPhone lit up. “What’s wrong?” came in response.  Even that short message gave me so much comfort.

I recounted dad’s story to Jen and in the process, tried to make some sense of it for myself. In the days ahead, I would be engaging doctors and nurses, looking for answers.

I needed to get what I knew straight.  I told Jen about dad’s fall two nights earlier, that he’d been verbally abusive to mom, that he was now in his second day in the hospital and nobody knew what was going on.  We thought that he’d had a stroke.  We thought that explained his desperate attempts to get me to understand that his right side felt hot and his left side felt cold.  I told Jen, I was convinced dad was trying to explain why he was at the hospital.  He was telling me the symptoms of having suffered a stroke.  We all agreed on this theory. It made sense because dad had been taking Coumdin, the blood thinner, for years.  He’d had circulatory problems in his legs.  Doctors had taken him off the drug when he developed a stomach lymphoma the year before.   Now that he was off the Coumadin, he probably developed a blood clot in his brain and suffered a stroke and fell.

“Yes!” Jen said.  “That must be it!”  I told her that I didn’t know how this was going to go, how we were hoping to get some clarity from the doctors tomorrow.  I told her how guilty I felt leaving him.  We cried together.  “I don’t think I can come home yet,” she said.  I felt relief.  As much as I would like her to be with us, this meant she had a life.  She had her own business to take care of.  I felt good about that.

“It’s okay,” I said.  “Right now, we’re still looking for answers. There’s not much you could do here.”

“But I’d be with you,” she said.

“You ARE with me.”

Saint John of Nepomuk – The protector of the Czech Republic. Photo credit by beggs

She told me about Prague, how magical it was.  She said that there’s a pedestrian bridge across the main river and it’s full of statues of Saints.  People from all over walk this bridge and visit one Saint in particular, to carry out a ritual of rubbing his statue and offering a blessing.  Jen told me that people have been doing this for centuries.

Saint John of Nepomuk - Rubbing this spot brings good luck!

Rubbing this spot brings good luck! Photo credit by crazbabe21

They believe the Saint protects and brings good luck.  “Daylight’s breaking here, I’ll visit him right now,” she said.  After exchanging “I love you’s,” I said good night.

Johnny, Ann and I talked with mom a little bit.  We agreed that we’d confront the powers-that-be at the hospital tomorrow morning with our revelation about the possible stroke.  The problem, mom pointed out, was that it was start of the weekend now and hospitals move at a slower pace during the weekends.  Doctors often don’t make rounds.  She braced us for the reality that answers might not come so quickly.  Johnny, was getting upset.  “So we’re just going to let him suffer?!” he cried.  There were no answers.

“I don’t know, John.  All I can do is take things one day at a time,” mom said.  That was her mantra.  And who was I to argue?

I think the world of my parents, of that  “greatest generation.” That’s all we could do; take it one day at a time.  We tucked mom in to bed, Johnny went home and Annie went to her old bedroom for the night.  My old bedroom was cluttered with dad’s junk so I could either sleep on the  living room couch (only to wake to an out-of-order shower) or I could check into a nearby hotel. I chose the latter.

On the 10-minute drive to the hotel, I started balling; the uncertainty, and the guilt all flooding me.

I must’ve been a sight for the front desk receptionist as she checked me in.  I didn’t pay attention to her expression.  I just wanted to crawl into bed.

I lay there thinking about all the questions; about dad’s health and how all of the loose ends in our family were still untied:  He’s got no will. What are his wishes?  What are their finances like?  Can they afford a long hospital stay or long term care?  Can they afford, or even want, assisted living?  How good is their insurance? Where are all their important papers?  If he comes home, is their house tidy enough for him to live in it?  Can they afford, or will mom allow, a visiting nurse?  What do we do with all this stuff he’s accumulated?  What things are valuable, what belongs in the family?  How do we address all the things that need repair?

The questions were overwhelming….

I’ll tell you more about what happened next in future posts.  Please take care and comment below, if you’d like to share your thoughts or experiences with me.  I appreciate hearing from you.

To be continued…

Read part five of Notes from the Problem Child, Arthur Roeser’s caregiving story.
Step into the caregiver ring: when the fight for your loved one begins

Step into the caregiver ring: when the fight for your loved one begins

This is part five of Notes from the Problem Child, Arthur Roeser’s caregiving story. Read part onepart two, part three, and part four.

I arrived at dad’s room and what I saw almost broke my heart.

Mom had been sitting in her chair all day.  She came to me and we hugged.  The lights were out.  The only light was coming from the hallway, casting contrasting colors and shadows.  Dad lay on his back, emaciated, grey, his face gaunt, white hair and beard unruly, mouth wide open.  He looked like a mummy.

“He’s awake,” mom said.  “They haven’t found anything yet.  They tried to take him for a cat scan and an MRI to see if he’d had a stroke but he complained and they couldn’t get him to be still in the imaging machine.”

“Dad, its Art,” I said, trying not to cry in front of him, lest that bother him.

“Hi Artie,” he nodded.

“I love you dad.”

He acknowledged.

I kissed him and gently stroked his wiry, white hair. “How come you’re in the hospital? What’s going on with you?”

He struggled to make words and kept repeating the same sentence over and over, while touching different sides of his head. His teeth were out and his speech was slurry and dreamy.  He was hard to understand.  I kept asking him to repeat it.  At times it looked like he was really annoyed that I couldn’t understand.  He’d hold his breath, as if summoning enough power to communicate his message clearly.  “It’s because the blah blah is blah and the blah blah is blah.”  I sat next to him, working out the words.

Stepping into the Caregiver Ring - When the Fight for Your Loved One Begins 1

Photo by morrissey

Johnny arrived with Ann.  Ann went to dad in her sweet voice; “Daddy it’s Annie, I wish I could just get into bed and cuddle up next to you.”  Dad acknowledged.  He knew who we all were, then he started in with the blah blahs again, really focussing on me more than the others.  Mom was exhausted and left.  Visiting hours were over but we stayed behind.  I sat next to dad as he tried to explain.

His face was so white and thin.  It was like talking to a plaster cast mold of my dad.  I leaned in.  I was inches away from his face.  His breath was a dry, rotted, earthy stench.  The only other time I’d smelled anything like that was when Jen and I went whale watching off the coast of Monterey, CA and we saw humpbacks breaching.  It was thrilling and the stench of their breath hit the whole boat like an alien force field and everyone grimaced.  At the time, I thought the smell was glorious.  It had come from this magnificent creature.  And now I was getting that same, strange, putrid smell from my father’s mouth.

I remained positive.  I was determined to find out what he was saying, to solve the mystery.  I wasn’t leaving the room until I knew what he wanted to tell me and I was satisfied he knew that I understood.  At times, he would get upset that we weren’t understanding him and would start over.

I stroked his head; “It’s okay dad, just take your time, we’ll get it.”

Finally we did.  He would touch the right side of his head; “It’s because the right side is blah.”  Then he’d touch the left side of his head; “And the left side is blah.”  I must’ve stayed by his side for 3 hours trying to decipher the message.  Then it came.  He touched the right side of his head;  “It’s because, the right side is hot.”  Then he touched his left side; “And he left side is cold.”

“Your left side is feels cold, dad?”

“Yes,” he said.  “You mean, like it feels numb?”


“So your right side feels okay but your left side is numb?”

“Yes!”  That’s it, we thought.  He must’ve suffered a stroke and fallen.  We were sure he was telling us his symptoms.  We looked closer at his face.  Sure enough, his left eye was a little droopier than the right.  We thought we had a breakthrough.

A stroke would explain the fall, it would explain his confused state.

Stepping into the Caregiver Ring - When the Fight for Your Loved One Begins 2

Photo by robert.harwig

It was late.  We told dad we had to leave but we’d be back the next day and tell the physician’s assistant, shift nurse or whoever might seem in charge.  What would happen the next day was the beginning of a seemingly endless turnstile of doctors, specialists, nurses, assistants and their grab bag of various diagnoses, treatments, therapies and drugs.

I had entered the caregiver ring, stepped inside and rose to the bell to fight alongside my dad and family. We were determined to find out what was wrong with him and get him better.  But it wouldn’t be that easy.

As I left his room, the lights were still off, the door open.  In the faded light, I kissed him again.

“Dad, we have to go, is that okay?”

He nodded.  “We’ll be back tomorrow.  I love you.” I held and stroked his hand and said goodbye.  As I left the room, the tears fell.

Would this goodbye indeed be the final goodbye?

Johnny looked at me. “Art, I think he might be crying.”

I poked my head inside.  Dad was cowering, meekly pulling the sheets up to his head.  He was scared.  God only knew what his night would be like.  I couldn’t bring myself to go back inside.  We all left.  I’ve never felt so guilty.

To be continued…

Read part four of Notes from the Problem Child.
Is this the last goodbye?

Is this the last goodbye?

This is part four of Notes from the Problem Child. Read part onepart two, and part three.

I was alone that night.

My wife, Jen, was on a business trip in Prague. She’d be really upset to hear the news and I couldn’t bring myself to interrupt her trip until I knew for sure what as going on. Jen and dad had a wonderful relationship. Jen’s father died of a heart attack when she was a little girl and she easily warmed to him.  He was taken with her and I suppose, in some psychological way, took up some of the slack.  She called him “dad” and he called her, “my special daughter.”  I would call her and tell her what was going on when it was more appropriate.  I didn’t have enough facts and an unfinished story would only set her head spinning.  I needed her to remain in the zone, at work.

“I don’t know what’s wrong,” my brother Johnny told me, over the phone.

“He’s delirious, not making sense.  They have him sedated. He sleeps a lot and mom has been there all day.  They’re going to run tests.” I asked what they thought.  “No one knows.  They need to run tests to see if he had a stroke or if it’s something else.”

I must’ve asked if he thought dad was dying.  Johnny said he didn’t think anything was imminent.

But he started to cry and struggled with his words;  “I love you Artie.  I have to go.  I’ll see you tomorrow.”  And he hung up.

For years, I’d thought about what it’d be like to say goodbye to my parents for the last time.

When I moved to the West coast 25 years ago, I waved to them from my car while they stood at their door and waved back.  At the time, I wondered if that would be the last time I’d see them.  It pained me as I pulled away.

More recently, as they grew frailer, I would have that feeling every time I came to visit and left.  Every time we had a phone conversation, I made an effort to say; “I love you.”  Now, as I was driving back there, with tears welling up in my eyes and bursts of sobs hitting me in waves, I wondered if this would indeed be the time.  And would I be too late to say goodbye? The thought of that made me worried sick.

I arrived at the hospital parking lot at night.  I called his room from my cellphone to let mom know I was about to come up.  I could hear dad moaning in pain in the background.  The orderlies were changing him.  The slightest movement hurt him.  “Why don’t you wait about 15 minutes, Art,” mom said.  I was dejected.  I wanted to be there but I used the extra time to walk into a drug store and buy myself some toothpaste, a toothbrush, deodorant, shaving cream and blades.

I’d brought enough clothes for a week. But I had no idea how long I’d be there.

I would check into my hotel room later.  I couldn’t stay at their house. There was no way to bathe– the bathrooms were a mess.  The downstairs toilet worked but the sink was clogged.  Same upstairs, plus the shower was clogged. My mom had to fill a plastic ice cream container with water and bath herself out of that.

Not only were the bathrooms mostly out of order but the floors, in particular, the down stairs linoleum floor, were covered in grime, stains and the unmistakable smell of urine.  My dad was not making it to the bowl in time, obviously.  And nobody had been cleaning for months at least.

It was just awful, embarrassing, depressing.

There were so many things that needed to get done in that house.  To me, the place seemed unlivable even for healthy people.  There was no way a sick, elderly person could live there safely.  There was no way anyone could comfortably rehab at home.  There was much work to do there.  And guess who was going to end up tackling all that?  Guess who going to have to wade through the quirky dynamics of our family and get us all to work together?

To be continued…

Read part three of Notes from the Problem Child.
Photo credit: deargdoom57
Beginning Caregiving with Tears, Prayer and Love

Beginning Caregiving with Tears, Prayer and Love

This is part three of Notes from the Problem ChildRead part one and part two.

I’m crying my eyes out.

Driving and tears running down my face, trying to focus on the road  The hospital where dad had been taken the night before was still a good six hours away.  I found I had to pull over at every available rest stop just to get out, walk around, recompose myself and bury my head in more Kleenex.

I’d gotten the call from mom the night before.  She never calls, especially late at night, so I knew something was wrong.  She said dad had been taken to the hospital.  He’d claimed he’d fallen the night before in the middle of the night and cried out in vain for help.  She didn’t hear anything and there was no clear evidence that a fall had taken place.  Then again, their house was cluttered with stuff.

I’d predicted a fall would happen so that part didn’t surprise me.

But it would be near impossible to tell if something was out of place, there was so much stuff lying around anyway.  Out of place was the norm in their house.  That afternoon (the day after his supposed fall), he’d been screaming at mom, saying all sorts of things completely out of character.  Finally she called the ambulance and accompanied him as he went screaming and fussing all the way to the hospital.  She’d been there all day while he got admitted.  Upon return, she found that he’d left little cryptic notes lying around the house.  Mom was completely confused.  “You better come, Artie. Something’s really wrong with Jack. It’s something neurological.  He says he fell.  Maybe he suffered a stroke?”

She told me the mean, awful things he’d said to her.  She’d also found these notes.  She was upset.  I said; “Mom, he’s not in his right mind.  Don’t believe what he was saying.  He doesn’t mean it.  You know that, right?”  She didn’t acknowledge.  “I’ll be there tomorrow,” I said.  “As soon as I can.”  “Artie, prepare yourself,” she warned.

“I’m not sure you’re going to recognize your father.”

I thought I’d gotten all my tears out that night, the night before my 6 hour drive to Chicago.  I’d had some pretty good, body-shaking sobs.  I’d prayed.  I’m not a religious person at all.  I was raised in a Baptist church and was baptized when I was 12.  It was my choice but I really didn’t do it because I believed.  I did it because it pleased my parents.

But I also feel like, I don’t know what exists and what doesn’t.

If you believe some higher power exists and that works for you, then it does!  I knew that baptism wouldn’t really compromise me in any way and, who knew, if I ever needed to call on a higher power, I always had that card.  Hypocritical?  Perhaps, to some.  I’m not a true believer but I pray every time I’m about to take off in a plane.  I pray before something serious, like surgery.

At that moment, I needed to believe, so I played my card.

I prayed for dad.  I prayed that he wasn’t in pain and that he wouldn’t be scared.  I prayed for the doctors to be able to treat him.  I prayed for strength for mom and for all of us.  I asked that I could have at least one more connection with him, that I could tell him I love him and that he’d know that love was coming from me.

To be continued…

When signs of trouble aren’t clear: the unknown and unpredictable in caregiving

When signs of trouble aren’t clear: the unknown and unpredictable in caregiving

This is part two of Notes from the Problem ChildRead part one here.


The problems with my dad started last Spring.

To set this up, actually, there were troubles way before then.  The dynamic my brother, sister and I had with mom and dad was the sort of thing that would’ve inspired George Carlin.  I remember he wrote a bit that went something like this…

When you’re a kid you brag about how old you are.  You’ll say something like, “I’m 6 and I’ll be 7 next month!”  Then when you’re middle-aged, you try to hide how old you are.  (Someone who’s over 50 jokes that they’re still 49).  But when you get elderly, you become like a child again and boast about your age; “I’m 91 and I’ll be 92 next month!”

Like kids, my parents would brag a little about their age.  They said things like; “We’re doing extremely well for people our age.“  Like kids, my parents were stubborn, just shy of pouting with their arms folded. They didn’t like being told what to do so they resisted doing anything that came across to them as lecturing, even if it came from a place of compassion, concern or just common sense.  Their inability to deal rationally and compassionately with their mortality was a denial of epic proportions and a source of great frustration for myself and my brother and sister, who are 12 and 14 years older than me.

It became hard to talk to them.

Both children of the Great Depression, my parents were both extremely resourceful and independent, wonderfully bright, very loving and giving people; having devoted much of their lives to community service and their church. They’ve done a lot for others.  As much as they could’ve.  I would argue that they haven’t done as much for themselves as they should have.  They’re real straight arrows.  When I see a Norman Rockwell painting, I can imagine zippering-in my folks (there they are, in a Protestant sanctuary worshiping along with all the other white people… there’s dad, sitting by the cop and kid at the soda shoppe… there‘s dad in his crisp Boy Scout uniform).  Dad was a proud Scouter.  He was a brilliant machine engineer, designer, craftsman.  He had a great memory for songs, speeches and poetry, plus perfect penmanship, which I tried to emulate when I was a kid.  He also had a kind of hokey, homespun sense of humor, from which I mostly rebelled (he would prefer Garrison Keillor or Andy Rooney to George Carlin).

This was a picture of 1950’s bliss; the post-War boom that spawned the middle class, bedroom, nuclear family and spawned me, along with all the other Baby Boomers.  I was born at the very tail end of this generation.  Of the three Boomers in our family, I’m the baby.  I love my parents beyond expression.  It’s hard not to love them.  They did pretty much everything right.  But things didn’t quite FIT right.  My parents embodied the “a-place-for-everything-and-everything-in-its-place” spirit in their creed but they didn’t live by it when it came to their homemaking and personal affairs.  That was always a problem.  As my parents got older and their health became more of an issue, it became more of a problem.

Add to that, the fact that my dad had been very hard-of-hearing through much of his adult life (he wore hearing aids ever since I can remember) and then you might realize how difficult it was to get through to him.  Sometimes you’d think he was hearing you and he wasn’t.  Other times he’d try to be a part of the conversation but invariably the topic would shift into what he wanted to discuss, not what we wanted to discuss.  Then we’d get frustrated.  Then he would get frustrated.  Sometimes he would disengage himself.  He’d just tune out, give up.  More recently, he became isolated.  He slept a lot, mostly in the daytime (and was up at night by himself).  He never went to bed, he just slept in his chair in the living room.  He seemed depressed.

It’s this isolation that may or may not have been a significant clue to what was going on with his health.



I have only these leads….  The previous Fall, all within the course of a week, he’d marched in a Veteran’s Day parade with other WW2 vets and been presented with this important (to him) lifetime Scouting award.  He was flying high.  Then he got into a car accident.  We kids feared this was going to happen.  He’d had some close calls in the car before.  He’d driven through stop signs, missed turns, almost backed into people in a parking lot.  We’d warn him that he shouldn’t be driving.  We said; “Dad, you can’t drive!  You’re being selfish.  How would you feel if you hurt someone else?”  He agreed but kept on driving; a 90-year old man with trifocals and bad hearing.  He didn’t like to be told what to do.  If I’d had any sense of courage I would’ve taken away his license and stolen his car.  But I’m a “good son” (or am I?).  The accident happened.  It wasn’t a major one and I don’t think it was entirely his fault but that’s not the point.  No one was physically hurt but it broke him emotionally.  He told me he just sat there in his car sobbing like a baby.  It’s as if an imaginary pillar of grandiosity had crumbled.  It shattered something inside him.  There was a shift.  His isolation and depression really started to set in.

Fast forward to his 91st birthday.  I called him and he said something peculiar to me.  He was rambling a bit on the phone.  This was not so unusual since our conversations weren’t always a clear connection, especially on the phone.  But out of the blue, he said; “I’m afraid that the next time you see me, you’re going to think I belong in a nursing home.“  I’m not sure what I said back to him.  I probably asked why he thought that and got nothing substantive in a reply.  I probably shrugged it off.  Maybe I just thought he was feeling sorry for himself because he’d added another year to his age.  Maybe he was giving me a clue.  Should I have seen a sign?  Would that be overreacting?  I mentioned it to my mom and siblings.  We didn’t know what to make of it.  We asked mom if we should say something to their GP.  “No, don’t bother,” was the reply. That was usually the reply.  I’ve kicked myself over this.  Could we somehow have prevented what was going to happen from happening?  But how can you help someone if they don’t want to help themselves?

One evening last Spring, my mother called me to say that dad had fallen in the middle of the night.  She had woken up and he was screaming at her.  He called her names.  He told her that he was a great man and she was nothing.  She’d done nothing in her life.  He was verbally abusive to her.  Mom was beside herself.  This was totally uncharacteristic of him.  She called for an ambulance and he went screaming and complaining to the hospital.  She was completely confused.  She’d found little notes lying around the living room with cryptic messages like; “3 am Lucid…4 am Not Lucid.”  “Call Doctor…I Die To-Day.” and “Happy with Jesus.”  Much of it was indecipherable.  The notes were written on containers, shreds of paper, the pages of magazines.  The penmanship was scraggly, off-kilter from normal, especially for him.

Needless to say, this was scary, mysterious, unchartered territory.

We didn’t know what was going on.  He’d told mom he’d fallen but mom didn’t believe it.  There was no evidence.  Had he made it up?  That wasn’t like him.  He could’ve easily tripped over some of the junk lying around.   Had he had a stroke?   He’d been treated for stomach lymphoma, was that it?  Had he mixed meds?  Was it a bladder infection?  What was causing this delirium, if it was that?  There was a puzzle but not all the pieces were in the box.

Thoughts raced through my head.  My dad was in trouble, that was the most important thing.  But there was also my mom’s well-being.  She‘s only 2 years younger than him, had triple-bypass surgery, wears a pacemaker, had a hip replacement, is diabetic and had various lymphomas herself.  Plus there was a house cluttered with crap and no clear-cut idea of what to do should either of them pass away.  No will, no living will, no clue.

What happened over the course of the year was a roller coaster.

This was just the beginning.  I’ll continue to take you through my journey.  Maybe we can figure it out.  Please feel free to comment.


Clutter: when caregiving doesn’t wrap up neatly

Clutter: when caregiving doesn’t wrap up neatly

This is part one of Notes from the Problem Child

On my father’s 92nd birthday, my mom, brother and I marked the occasion by getting rid of all his clothes.

He wouldn’t be needing them anymore.  By that time, he’d been dead nearly 5 weeks.

Two thoughts echoing inside my head kept me from crying uncontrollably as we set to this arduous task of hunting, gathering, sorting clothes and assembling bags and boxes of like-items.  The first idea that relieved the sting from this procedure was that we’d be donating all the clothes to a shelter in the inner-city.  When my parents first got involved with the shelter, it was fledgling.  They volunteered to work in the soup kitchen every Thursday and serve food.  By that time in their lives, they were well into their 70’s and they‘d been doing it steady ever since.  The notion of two seniors venturing into a seedy part of Chicago to carry on with this filled me with a lot more respect for them, which was plenty to begin with.  My dad also founded a literacy program through the shelter and routinely visited some rough neighborhoods by himself to tutor children of broken homes.  These were kids without dads, whom he taught how to read.  I like to think that there are a few people walking around in a better place right now because of him.  Now that the shelter was thriving, with the donation of these new (old) clothes, I knew that, even in death, he was still helping bring more people to a better place.  At least they’d have some comfort.  It’d been a cold winter, not unusual for a town on the Great Lakes.


It was his birthday and he was giving someone else a gift.

The other thought I had wasn’t as pleasant.  It was something that had burned inside me for years.  The collection and removal of clothes represented just a small fraction of the enormous amount of clutter that my parents (but in particular my dad) had amassed over the years.  And I was determined to get rid of it.  Dad was a collector (which is a nicer version of the word “hoarder” but the latter may be more appropriate). Since I’m the youngest of 3 kids, I have this feeling that I’m entitled to more anger about having to deal with this problem than my brother or sister.  Since most of this stuff had accumulated while I was living at the house (with my bother and sister away at college), I had dealt with it more.  I had tripped over, stubbed on, lost amongst and attempted to work and grow up around…junk, for longer than anyone else.  Of course I’m entitled to feel more frustrated by this, right?  And of course, with that, there’s a guilt that goes with carrying a degree of hate toward two people who were (and are) so accomplished, so good and wonderful.


There was clutter; in more ways than one.

Problems started surfacing when my dad began deteriorating last spring.  He was sick and acting strange, at times nasty (totally unlike his personality).  He was not cooperating with doctors.  Doctors didn’t know exactly what was happening to him, which was another source of frustration.  New words entered our lexicon.  One of the most widely used was Dementia.  One symptom led to another and medication A was followed by medication B, then C.  My mom did her best to handle everything but she isn’t one to push for answers and keeps her feelings inside.  She more or less rolled with the punches.

To make matters worse, neither of my parents had a will, power of attorney or health care proxy, despite the pleadings of their children to be prepared for the inevitable.  We didn’t know what their wishes were or even where all their records were.  There’d been no discussions beyond the kids (very respectfully) asking for steps to be taken, for plans to be laid out.  We had anticipated trouble for years.  We asked for stuff to be thrown out, sold or designated to be handed down (God forbid either one of them should trip and fall).  We’d asked for home repairs to be made (for several years, they’d had no working shower and both bathroom sinks weren’t functioning).  We’d suggested they hire cleaning help and seek an elder law attorney.  No such luck.  We’d offer to help them do all this; “No thanks.”  We tried to convince them that they’d live a more enjoyable life, only to hear our parents retort; “We don’t like to be told what to do!“  Who on Earth was doing that?

These problems surfaced like slime stirred up from a riverbed.  You don’t always see slime but when you have to get out of the boat and swim, you find it clinging to you and you just want it to go away.  But like algae in a river, these family nuisances must have a purpose.  A purpose of which I’m still discovering and from which, I’m struggling to making sense.

Fortunately, a river flows.

Call me the Problem Child.  I’ll be telling my story here.  I hope it helps me.  I hope it helps you.  I welcome your thoughts.


With cancer and dementia, the caregiver must be hyper-vigilant

With cancer and dementia, the caregiver must be hyper-vigilant

Focusing on healing one condition is tough enough, but two? This can feel about as hard and confusing to the caregiver as it is to the patient.

For example, dealing with cancer combined with dementia can present a host of conflicts, complications and questions. Unfortunately for the patient, recent research by the Moffitt Cancer Center in Tampa, FL indicates a dramatic difference in the life expectancy between patients with cancer alone and those with cancer combined with dementia. People with both cancer and dementia die much sooner than those with cancer alone. The accounts for this are unclear and speculative. One explanation is that there’s often an uncertainty with diagnosing and treating dementia in the first place and symptoms of dementia often mask other ailments. It could also be that people with dementia simply aren’t given cancer screenings as often they could and therefore the cancer goes undetected or untreated altogether. Somehow, the dementia can enable medical professionals to miss the cancer.

For the caregiver, this presents added challenges. Under these circumstances, care includes becoming an advocate for the patient by staying on top of doctors and making sure check-ups are handled regularly and thoroughly and that proper treatments are administered. Since the patient may not be able to speak for themselves or make their symptoms clearly known, caregivers are on heightened alert to spot signs of trouble and to speak on behalf of their loved ones. Of course, this leads to added stress for the caregiver. What to do?

Author and caregiver advocate, Linda Burhans laments that there’s not much out there by way of information on how to deal with cancer coupled with dementia. So she suggests that caregivers seek out and get involved in a support group, either online or in person. The idea of having a sounding board or just knowing that you’re not alone can be invaluable enough. But researchers from the University of Michigan School of Nursing found there’s more to it. Their 2012 study revealed that caregivers are more likely to have reduced stress, improved sleep, better immune function and overall physical health by being involved in an established caregiver support organization. To a larger extent, so-called “caregiver interventions” can also arm the caregiver with valuable coping skills, knowledge and a better quality of life, overall. This kind of empowerment likely results in better care of the patient and ultimately in their improved physical and mental health.

These findings are supported by the NYU Langone Medical Center, which found that support groups reduce a caregiver’s depression level, while at the same time increase their ability to react effectively to problems. Social groups, where one could gain information, learn how to recognize warning signs and manage expectations, talk to doctors, practice nursing skills, learn new ways of handling tasks, and receive feedback are most meaningful. It improves a caregiver’s self-esteem and can also help during time of bereavement. The support a caregiver receives, in effect, makes them more resilient.

Researchers agree that more standards of care protocol need to be implemented when it comes to dealing with dementia paired with cancer. As medicine advances to where we keep getting older and older, it stands to reason that more of the elderly will unfortunately suffer through both cancer and dementia together. If there’s a lack of understanding of how to deal with this now, we can hope that caregivers will have a blueprint in the future. For now, find help and strength in the form of support groups, spiritual wellness groups, friends and online resources that deal with one condition or the other (such as The American Cancer Society and Alzheimer’s Foundation of America) and stay informed on the latest treatments available. It is within every person’s right and dignity to seek and receive the best care possible. Every patient deserves it. And so do you.


Cancer and Dementia Together — a Deadly Situation,

For Alzheimer’s, Detection Advances Outpace Treatment Options, New York Times

Resources for Seniors Suffering from Dementia and Cancer,

Behavioral and Psychosocial Interventions for Family Caregivers, American Journal of Nursing

Psychosocial Care for Family Caregivers of Patients With Cancer, Journal of Clinical Oncology

How effective are interventions with caregivers? An updated meta-analysis, Gerontologist

Translating an Evidence-based Intervention for Spouse-Caregivers into Intervention for Spouse-Caregivers into Community Settings, Dr. Mary S. Mittelman

Palliative care in dementia: issues and evidence, Advances in Psychiatric Treatment