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.

About Arthur Roeser

Profile photo of Arthur RoeserArthur 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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