Column: Cape Cod Hospital is not where I expected to have my summer stay-cation!

Last week, my husband, Bob, was discharged after a nine-day stay at Cape Cod Hospital. What happened was this: one morning, he couldn’t get out of bed. After 45 minutes, I was able to roll him on his side to the point where he could get to the floor. With exhaustive effort, I managed to get him into a chair.

In my crazy state of this-isn’t-happening denial, I foolishly waited an entire hour before facing reality; we were in a crisis.

Bob’s eyes were glassy and unfocused. His mouth was hanging open. Instead of speech, he made guttural sounds. He was immobilized ― paralyzed.

Barely able to control my shaking hands, I called 911. “Is he breathing?” the dispatcher kept asking. At times, that was hard to tell.

As the EMTs hoisted him onto the gurney and raced him out to the ambulance, all I could think of was, “He’s never coming home again. The dementia has finally won.”

When I got to the ER, he was in the same shocking state. A stroke was ruled out. It seemed a hundred things were ruled out. Nobody had a clue as to what was wrong.

The attending physician took me aside. Now, I want to tell you, my caring readers, that this doctor’s words, which I’m about to convey to you, are as verbatim as verbatim comes.

He said, with urgency, “If his heart stops beating, do you want us to perform CPR?”

“Yes!” I said, vehemently.

The doctor, who knew Bob’s dementia was severe, was stunned. “You can’t let him go back to the state he’s been living in. What kind of a life is that?”

I’m not a bold person. In fact, I’m quite shy. But something came flooding over me. Does my husband get CPR and possibly live? Or does he die? It was all in my hands now.

With fury in my words, I said, “What do you know about his life? What do you know about the joy he feels every single day?”

“Your husband’s already lived his life. Can’t you see that?”

I’ll tell you; this person was heavily emotionally invested in not providing CPR. His level of intensity was soaring.

He then asked me what Bob wanted. “Well,” I said, “he might not have wanted heroic measures, but we signed those papers years ago.”

“You should do what he wants!”

“That was over fifteen years ago!”

“But that’s what he wants! You should go back and find those papers!”

And that’s when it all became vividly clear. You all know I’m disabled. So standing is no mean feat. But stand I did. And with defiance, I commanded, “Now you listen to me!”

He stepped back.

“I’m not going back for any papers. Why? I don’t need to. I am telling you that I do NOT care what the hell was on those papers. At this moment, I am overriding those papers. Why? Because now, it’s all about what I want!”

I was livid. I was furious. I was enraged when I told this doctor, “I want you to hear this and I want you to write this down: If my husband’s heart stops beating, I want you to give it all you got. I want you to do the damn CPR. Is that clear!?”

Apparently, I was quite clear.

The doctor grew quiet. He was probably disgusted with me and my choice. I stopped myself from explaining to him about Bob’s remaining capacities to feel joy, to laugh, to feel love for others, and to feel loved by so many. I didn’t mention that when Bob says to me, “I love you,” he means it. I do believe that if he were of sound mind, he would not want to give up these blessings.

And now, before I write to you any further, my caring readers from near and far, there’s something I’d like you to know. As a Cape Cod Times columnist, I am under no obligation to write good things about Cape Cod Hospital. I have the blessed freedom to give my opinions.

So, it’s time, in this column, to tell you that most of Bob’s staff were extraordinary. He received outstanding care. Especially from Rosie on North 3.

Bob needed so much minute-to-minute care, and that’s what he received. I mean, every step he tried to take was monitored with hands-on care to keep him from falling.

But things didn’t always go so well. Hey, I truly get it; I understand that hospitals are understaffed. I know that the trend now is for more demands but with tighter schedules allowing for less and less patient-centered care.

Well, still. That’s no excuse for when it comes to staff/patient/family relations, the ability to calm, to nurture, to inform kindly, was, I thought, sorely missing. I can’t remember even one specialist, be it a nurse, physical therapist, doctor, occupational therapist, or case manager who didn’t defensively say “I don’t know! My shift only started 15 minutes ago.” or “I don’t know; that’s not my department. You’ll have to ask them.”

It was determined by staff that Bob would be transferred to a rehab facility for a minimum 10-day stay. But he thwarted that plan; he got better all by himself.

Finally, he was able to walk and talk. He was in the same state that he was in before the hospital.

On the ninth day, I had a phone conversation with Bob’s doctor whom I’d never met. He said, “He tested positive for Lyme disease.”

“I didn’t know that!”

“You didn’t?” the doctor said. “It was in his chart four days ago.”

“And nobody told me?”

Silence.

So, Bob’s paralysis and inability to speak have been attributed to Lyme. I have armed myself with literature. I’m not going to sit back and let this disease have its way with Bob’s body without putting up a fight. I won’t passively wait and see.

I’ve come to believe that currently, in navigating the healthcare maze, we must take more charge of our care. Relying on someone else to follow-up, to schedule a test, to refer us to a specialist, just isn’t realistic anymore.

And if it comes to fueling up with power when we’re feeling shy and powerless, well, you can do that. At least I did. I’ll tell you something, though; it helps when you’re fighting for someone you love.

Award-winning columnist, Saralee Perel, is a practicing psychotherapist in Marstons Mills. She can be reached at: sperel@saraleeperel.com. Her columns run the first Friday of every month.

This article originally appeared on Cape Cod Times: Column: Cape Cod Hospital is not where I expected to have my summer stay-cation!