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…

Written by Arthur Roeser
Arthur retells his story caring for his mother and father, covering many common issues caregivers face through first person narration, such as: hoarding, sibling conflict, parents unwilling to be helped, finances, communication with medical professionals, guilt, anxiety, stress and shame.

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  1. This isn’t a fun thing … I’m dealing with now

  2. I loved this post. I look forward to reading more. My husband experienced two + months of delerium during his first hospital trip. It was confusing and terrifying and years later has led to a PTSD diagnosis. The dreams he had were real to him (and absolutely horrifying).

  3. Hope you write more!


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