Lessons on Being a Caregiver

I had to take Patrick to the ER today—or, as Patrick put it, we “graced the ER with our presence.”

It has been nine months, after all. Not since last October.

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I picked a hell of a week to go off Xanax. It was a hell of a week, period: finished out my two summer classes. Finished out two major projects at the office. Triple-digit temperatures. I’ve eaten my way through an entire box of heavy-duty migraine medication—a direct result of said triple-digit temperatures. The heat is cooking my poor brain in its skull like a poached egg.

Worst of all, I had a full-blown panic attack on Wednesday night, the last night of Utopian & Anti-Utopian Lit class.

Like a lot of classes, those of us with a high enough grade were exempt from taking the final. Instead, we got to watch a film, Never Let Me Go. So we brought snacks and settled in to watch the movie and have a discussion about it afterwards.

Never Let Me Go is a crushingly depressing film set in a dystopian, alternate world.  It focuses on three children growing up in what appears to an orphanage/boarding school in the English countryside. But you get the sense early in the film that something is off. Gradually, it is revealed that these children were cloned and grown specifically to be organ donors. They will donate organs until they are dead. It seems that none of them live to see forty. Perhaps not even thirty-five.

I had seen the film before—seen it, and read the book by Kazuo Ishiguro. Therefore nothing in it should have come as any big shock.

Yet about two-thirds of the way through the film, when the main character, Kathy, played by Carey Mulligan, opts to become a caregiver – someone who takes care of her fellow organ donors expressly for the purpose of improving their quality of life – and she goes to visit one of them in the hospital, it felt like someone kicked me squarely in the stomach.

Starting to hyperventilate, I clapped my hands over my mouth to cover up the gasping sounds I was making, got up, and walked quickly out of the room, tears streaming down my face, shaking so hard I wasn’t sure I was going to make it out to the bench around the corner in the hallway—somewhere safely out of earshot so I could break down utterly.

And I knew. It was the hospital setting. The machines. The IV pole. The needles. The bandages. The sight of a person in a hospital bed. An organ donor. The young woman standing beside the bed, bringing cookies, reading aloud from a book, being a caregiver.  Death—especially the idea that someone has to die in order so that someone else’s quality of life may be improved. It was all of those things that triggered the response.

It took me a good ten minutes to pull myself together. I made myself get up and watch the rest of it. I can’t fall apart at the sight of hospitals. I can’t. Sooner or later, I told myself sternly, you will have to go back to one. It’s not a question.

The next day, at work, I had to participate in a tour of our Health Science Institute. Even though I work at MCC, I’ve never actually been around the Institute except to visit its administrative offices, where my boss works. I was aware that it had stuff like a human-patient simulator lab and a virtual hospital, complete with dummies that emulate physiological responses. But I didn’t think about it until we walked into the rooms and I started to feel a bit faint.

“Are you okay?” my boss asked. “You look like you don’t feel well.”

I shook my head. “Just the heat.” And I made it through the tour.

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So why such a dramatic response? Well, I’ve been seeing a therapist for a little over a month now. I was very fortunate to find a therapist who specializes in adult caregivers, and is, himself, a caregiver—his wife has MS. After hashing out the usual stuff – my own medical history, childhood, etc. -- we’ve just now started getting to the subject of my being a caregiver and what that means.

All this time, I thought I was bad at it. I remember the first time someone called me a caregiver. It made me shift uncomfortably in my chair. I didn’t like it. Then there’s this guy I work with who is, himself, handicapped. Every time he sees me, he takes my hands in his and positively gushes, “Your husband is so lucky, so blessed to have a wife like you—to have someone who sticks by him. I hope he knows that. God bless you.” And I stand there uncomfortably, nodding and thinking, You’re wrong. You’re wrong.

I thought that being a caregiver was something that you’re either good at or you’re not—that it comes naturally, like being able to sing. I forgot that even singers have to practice and rehearse.

And because I thought I was bad at it, I thought I was a horrible person. But that wasn’t it at all. I was confusing having negative thoughts and feelings, which are perfectly normal, with being a bad person. I knew my feelings were normal – anger, resentment, bitterness, guilt, etc. – but knowing that you’re having normal feelings in the abstract is one thing.

Looking at your ill spouse and thinking, I hate you is quite another. And then hearing what a great person you are for sticking around when, in actuality, all you can think about is leaving—well, guilt is a slow poison. It’s more insidious than rage or despair, cuts deeper than depression, leaves runnels in the soul. And, O my brothers, I cracked.

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My therapist had me list all the things I’ve done (and continue to do) for Patrick since Patrick got sick, and I hadn’t realized how much it amounted to. All the little things. All the big things—including the fact that I do stay.

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A few days ago, Patrick noticed a bulge just above his groin, low, on his right side. Hernias are common in PD patients—the treatments eventually just wear out the abdominal walls. There were a few other possibilities, like a dislodged catheter, or a build-up of dialysate fluid.

I don’t know why he waited till Saturday to tell me. But as soon as he did and showed me what was wrong, I said we should go to the ER. I’m not even going to fuck around with funny lumps in the abdominal/pelvic region. (The sentences you end up typing in your life!) Any of these problems could jeopardize his catheter site. If there’s a problem with his catheter site, that could potentially mean he’d have to quit PD treatments and go on hemo, and neither of us want that—it would mean a substantial decrease in quality of life.

Patrick didn’t want to go to go to the ER, of course. “What am I gonna say?” he asked. “Hi, please check out the bulge in my pants?” He didn’t think this was urgent enough; he has a clinic appointment on Tuesday. I didn’t think it was something we should let wait, and I said if we called up his doctor, she’d agree with me.

So we packed our bags. Patrick downed a protein shake because who knew when he might get to eat again, especially if he ended up needing surgery.

“I’ll go start the car,” he said when he was done.

“I’ll drive,” I protested.

“I feel well enough to drive,” he said unanswerably. “If it’s all the same to you, I’d rather not wreck, what with you having panic attacks at the sight of hospital stuff and all.”

Ouch. And point.

Our ER-visiting skills were only slightly rusty—the only thing we forgot was to print off a copy of Patrick’s updated medication list. Otherwise, it was pretty par for the course. You can imagine what the ER waiting room might be like on a hot Saturday afternoon at Research Hospital. Two of our favorite ER docs were on the floor, Dr. Richards and Dr. Shanks—Patrick was seen by the latter.

I had called Coyote before we left. He immediately offered to come sit with us. I told him not to, because I wasn’t sure how long this would take, or if Patrick would be admitted or not. But after we’d been at the hospital for several hours, I started to get very hungry. So when Coyote called me for news, I took him up on his offer to bring me food.

Less than five minutes after that, Dr. Shanks came in to see Patrick and pronounced that Patrick did, in fact, have a hernia, but we’d caught it early and it was in no way interfering with his catheter. She said to follow up on Monday with his regular doctor to arrange surgery to get it taken care of. Patrick was dressed and released ten minutes after that.

I tried to call Coyote to tell him to cancel the cheeseburger order, but I couldn’t reach him. So we gave up and went home.

No sooner had we arrived at home, then Coyote called me from the phone in the hospital waiting room. Coyote, being Coyote, wasn’t upset about the mix-up—just glad that Patrick had been released.

“Yes, we apologize for the efficiency of the hospital staff,” Patrick shouted to Coyote from the other room. “Who could have foreseen that?”

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So here’s what I’ve learned about being a caregiver (in no particular order):

1. Being a caregiver is not an inborn talent. Looking back at my “Hanging Blood” piece where I said I wasn’t a caregiver, I have learned that maybe nobody is. No, I’m not a mother. Maybe there’s no such thing as maternal instinct, either. Look at Casey Anthony. No, I don’t necessarily think that she killed her child. But she was, indisputably, a crappy mother. Maybe there are people who have a knack for it. And then there are the rest of us, who have to learn how the hell you do this.

2. This illness is happening to both of you. This is something my therapist said to me and I’ve thought it over. At first, I thought it was stupid, like those couples who insist on saying, “We’re pregnant.” I used to be like, whatever. But it’s true. From a practical standpoint, of course, an illness of this magnitude is devastating. The first time you open a five-figure medical bill, you go a little dizzy. Both your names are attached to the mortgage and the credit rating. We have been watching the news breathlessly, wondering how Congress is going to come down on the debt issue because it will affect whether we – not he, we – will continue to receive little niceties like disability, Medicare and student loan benefits.

From a more personal standpoint, I’m sure this varies from couple to couple. In my experience, his pain is worse than my own. I have to turn my face away when they so much as come in to run the IV line.

3. BE KIND TO YOURSELF. I could tattoo it on the inside of my arm. This week, the therapist said to me, “I’m starting to get the sense that you hold yourself to some . . . really high standards in every aspect of your life—personally, academically, professionally. . .”

Me: “. . . Yeah. ”

I think there's something to be said about accepting your limitations. I don't know. I’m still working on this one.

4. Finally, I have learned that I am one. A very, very good one.

There. I said it.