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.
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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