Personal and Family Crises

Yes, it’s been a month since my last post, and I owe you all an explanation. So here’s what’s been happening:

In mid-February, my dad fell down his stairs and hit his head. He hit hard, but seemed okay, at first. It was four days later when he became confused and delusional, wandering outside barefoot during a sleet storm. His wife coaxed him home and called me. We knew he needed to go to a hospital.

My brother and I discussed next steps and decided not to call 911, knowing that the ambulance would take us local. We knew he may need a neurosurgeon, and we needed to take him to the Big House, our city hospital. And so, in the early dusk of a busy weekday, we guided my confused and stumbling father to the passenger seat of my minivan, boosted him up and belted him in.

I drove him in alone, and I knew we were in for a long night. In the hospital driveway, I wanted to drop him close to the entrance, but I had no help and I worried that he would wander away again while I parked the car. So into the parking garage we drove.

And I questioned the wisdom of that decision the whole interminable walk from the car to the emergency room. He almost fell getting out of the car, tripped getting in the elevator, and could barely navigate the stairs– yes, stairs– leading to the entrance. He was weak and unsteady, and I was an anxious wreck.

But we made it to triage without another fall, and they seemed to take us seriously. I told every medical assistant, nurse and attendant that I was especially concerned about a subdural hematoma.

Subdural hematoma is a type of brain bleed that especially impacts the elderly. As we age, we all have some brain shrinkage, which opens up a space between the bony skull and the soft brain. It’s this space that can accommodate a blood collection after head trauma. Older folks are often on aspirin or other blood thinners for common medical problems like heart disease or strokes, which can make bleeds worse.

“Yes, that is certainly a classic history for a subdural hematoma,” everyone commented. And yet we were still waiting for a CT scan hours later.

It is what it is, the emergency room. God love the people that work in there, it’s always an effing zoo. We were assigned to a stretcher in the hallway, squeezed tightly between the mop cart and two public toilets. No sooner did Dad lay down on the stretcher, when an aide burst out of the toilet, waving the air and yelling “No one go in there, this bathroom is off-limits until the cleaning crew gets here!” I can attest, we were there for hours and hours, and that bathroom was never cleared for use.

Finally, around 11 p.m., I realized I would have to leave Dad. He hadn’t had his CT scan yet, and he was still disoriented. The only good thing was he was also very sleepy. While that doesn’t always bode neurologically well, I was also reassured that he was less likely to get off the stretcher and go wandering around the emergency room. I begged an aide to keep an eye on him, and left. I felt like I was leaving my child.

It was after 1 a.m. when the neurosurgeons called. Yes, he had a subdural hematoma, a small-to-medium-sized bleed, they may or may not need to perform a craniotomy (open his skull to drain it), but they were moving him to the neurointensive care unit for closer monitoring. There were several more phone calls from his doctors that night, and we ended with the plan that I would bring his most recent brain MRI on disc and we would discuss pros and cons of surgery in person in the morning.

This is where the whole thing gets painful.

I was at the hospital by 6:15 a.m. I stopped by my office to drop off my coat and bag, and glanced at my own clinic schedule, which was to start at 7:30 a.m. “Plenty of time,” I thought. I slapped on my hospital badge and strode right up the neurointensive care unit. It’s in a beautiful new building, with a beautiful indoor courtyard garden and private rooms. I walked through, so glad he was there, thinking about the last patient I’d had up there just a few weeks before, a lovely and active person with the exact same diagnosis as my Dad. She had done very well.

I stopped at the front desk and said I had the MRI the surgeons had asked for, and they had wanted to meet with me.

“Sure,” said the very nice lady behind the desk. “The nurses are in report but they’ll be with you in a few minutes.”

“Okay, I’ll just go wait in the room,” I murmured, thinking of a million things, anxious to see my Dad. I knew what room he was in, it was two doors down from my patient’s.

The lights were dimmed. He was restless in the bed, in four-point restraints, pulling at them, talking to himself.

I put my hand on his. “Hi, Dad!” I tried to grin, to cheer. It was a grimace, and tears.

“You’re here!” he whispered, and smiled with relief.

And then a nurse burst in, followed by four or five more. She was breathless, angry: “We are going to call security. Right now. You need to leave. Now.”

I stood shocked, completely dumbfounded.

She started again: “You can’t just walk in here. You need to go. Now.”

Some part of my brain registered that they must not have realized I was the relative. “This is my Dad,” I tried to explain. “I’m here with the MRI,” and I held it up, as proof. “The neurosurgeons had wanted to meet with me… and, I work here…” my tone lilted up, more a question than a statement, as I pointed to my badge.

“You blew past our receptionist,” insisted the nurse.

A woman behind her added: “You was aggressive.” She put her hands on her hips in emphasis.

My brain worked, really worked, to process this: I must have missed some signal from the front desk lady. I tried to recall the interaction. Distracted, tired, anxious, I had said… What had I said? “Okay, I’ll just go wait in the room.” Somehow, I had missed a cue, and that had been interpreted as “aggressive”.

Which pissed me off. My thoughts:

I’m killing myself to be the supportive and helpful family member, dutifully following the instructions of the surgeon who called me overnight, I’m standing here in the dark crying with an MRI on disc in one hand and comforting my father with the other… I missed my kids’ bedtime last night and won’t see them until later tonight, I’ve got a full morning clinic starting in an hour, I’m exhausted and worried and I’ve never seen my Dad like this, I’ve got way more going on than I can handle and these bitches want to call security on me? No. Just no.

But I didn’t want to lose my temper, because when family members throw fits, patients get crappy care. I’m sure there’s a study on that.

So I put on my best calm, cool, and collected face and explained as innocently as a lamb that there must have been some misunderstanding, I never heard any instructions from the person at the front desk. I apologized, I certainly hadn’t meant to seem aggressive, really, I was just worried and distracted. Sorry, so sorry.

Two more nurses came in, each one a higher rank and a kinder soul than the one prior, and after a few more minutes, we were all friends. The first nurse apologized, everyone apologized, and he really did have excellent care.

But, that took a lot out of me, and made the whole ICU stay far more stressful than it needed to be. Just walking past the front desk gave me palpitations. I’m not sure I’ll ever go to that floor again.

The surgeons, I never saw them in person the whole entire admission, and they never looked at that MRI. But Dad was monitored in their ICU for a few days, and they were good about calling with updates. The bleed was stable and they decided not to perform a craniotomy (which was good). Dad went to the regular floor, another beautiful private room, and began the task of getting well. He was there another week with various issues, and it was the other consulted specialities that spent time with us, got a good history, answered questions: Neurology, Medicine. Dad continued to be very disoriented and confused, at times agitated, always wanting us to take him home. We explained what had happened to him endlessly, and he never remembered.

From there he went to a physical rehabilitation center. He didn’t qualify for the more intensive acute rehab, only the nursing home-level rehab. It was a two-week stay, and there were lots of visits and discussions with case managers, PTs and OTs. He went from stumbling with a walker to strolling down the hallways. He’s much calmer, pleasant even, but still confused.

And so the crisis is ongoing. His brain is unlikely to fully recover. His house is full of stairs, the yard is huge, there’s a lot of other medical things going on, and they can’t stay there. So we’re selling the house, and doing the whole power of attorney thing, the elder care planning dance. There’s phone calls and meetings and paperwork, visiting nurses and lawyers and accountants and financial guys… And doctors.

This week is his followup with neurosurgery. It occurs to me it will be my first time actually meeting these people. I have no doubt the subdural is absorbing, and I wish we didn’t have to go, but I guess it’s important.

This personal and family crisis seems small now that we’re near the other side of it, and at the beginning of the Coronavirus crisis. I feel like we’re just getting to some resolution with Dad’s situation, and there’s this new and pressing, massive problem facing us all.

More on that soon…