imperfect to perfect

“Hey, give me my medicine. It’s mine. Give it to me now!” my father-in-law called from the top of the stairs.

I groaned inside. Not again. How many times do I have to tell him the same thing? Shut … up. Shut up. Shut … up. Dear God, please make him shut up.

I reversed direction, and instead of reaching toward the shelf to put away a glass I’d removed from the dishwasher, I filled it with water and drank deeply, trying to drown the words before they could escape into the air.

Don’t say it. Don’t even think it. My face warmed from the rush of adrenaline coursing through me as I struggled to get my emotions under control. The deep, undeniable anger I was struggling with came out of nowhere, and I couldn’t understand why it was surging through me now. We had been through hell the past several months, but all that was over and things were getting better.

This is so wrong. What’s happening to me? The words “fight or flight” popped into my head. What happens when you can do neither? I wondered, sudden tears coursing down my face and sliding off my chin to mingle with drops of icy water I’d spilled on my pajama top.

“Do you hear me?” my father-in-law repeated, shuffling toward me, the shush, swish, shush of his worn slippers punctuating every word. Suddenly I hated that sound. “I can take my medicine by myself. It’s too much trouble for you.”

“I heard you,” I answered.

I heard you this time and the last time and the time before that. I heard you yesterday and last night and at least ten times every day since you came home from the hospital. I hurried to dry my tears on my sleeve before he saw them.

Not that he’d notice, the mean little voice inside chided. He lives in his own world and you exist only in relation to his needs. He doesn’t even like you. You heard him talking to the nurses. You were useless. All you did was sit and stare at him all day. You fed him like a baby and nagged him all the time just like that other lady, the one who said, “Swallow, swallow, swallow, chew, chew, chew, and take small bites.”

“I can’t let you take your medicine on your own anymore, Rodger,” I explained, just as I did every time he’d bring it up. “We let you do it before and you fooled us. You spit it out and got very sick. You almost died. I can’t let you do that again.”

“Yeah?”

“Yes. You were in the hospital for a long time.”

“I remember. I had pneumonia.” I didn’t know if he actually remembered or not. His memory was so spotty and his determination to hide it so strong, it was impossible to tell what he recalled and what he pretended he knew.

“And before that you were on the psychiatric ward with the crazy people. Do you remember that part?”

“When I lived in Pittsburgh I went berserk one time.”

“You went berserk here too, and that’s why I give you your medicine now. I can’t take a chance you’ll get sick again.” I handed him the small cup of applesauce containing his midmorning dose and watched carefully as he swallowed every bite.

“I know you don’t trust me,” he said, heading back upstairs to his room, “but think about it. I’m okay now and I can take my medicine by myself.”

No you can’t. And maybe I can’t take care of you either. Why in the world did I ever think I could do this? I’ve made so many mistakes in my life. I failed at my first try at being a wife and made huge mistakes as a mother and a daughter. Hell, my own father chose a new family over a relationship with me and hasn’t been heard from in years.

“God help us both,” I whispered as the memories came flooding back.

“They both bitch at me all the time,” Rodger had said, unaware I’d come back to the hospital to feed him dinner. “But she’s the worst. She thinks I’m a baby. She’s no damn good. I know all about women like her. No damn good. And look at the crap she brings. Flowers and cards and this damn thing.”

Just then the little teddy bear I hoped would cheer him up sailed through the doorway of his hospital room.

Susie, his day nurse, came out a moment later and scooped it up. “He didn’t mean that,” she said, walking over and putting a hand on my shoulder.

“I know,” I answered, surprised by the hurt his angry words had caused. “He’s been through a lot in the last year.”

“From what I read in his charts, you both have. He was up on the psychiatric floor for eight weeks then home for two days before coming back in with pneumonia. He spent a week in ICU and now he’s here in step-down, still recuperating and undergoing more tests to find out if his swallowing problem was caused by a small stroke. I see you here every day. Your father is lucky to have you. Many of our patients have no one. Just remember you have to take care of yourself too.”

“I will once we know he’s going to be okay. And, for the record, he’s my father-in-law. He came to live with my husband and me when my mother-in-law passed away last year. Caring for him is now my full-time job.”

“Well, I say again, he’s lucky to have you. God bless you and your husband—and don’t let him fool you. He’s glad you’re here, even if he won’t admit it.”

Before I could comment either way, Susie was off to tend to her next patient.

I forced myself to smile, and swallowing my dismay over what I’d just heard, I went into the room he shared with three other disabled veterans.

“Hi, Rodger. How are you feeling today?”

Before he had a chance to answer, the man in the bed directly across from him spoke up. “Hey, welcome back.” He grinned.

“Hello, Mr. Johnson. Are you still here? I thought you were going home today.”

“I was supposed to but they say I need another day or two. I don’t mind though. Looking at you makes me feel like I’m seventy again.”

I chuckled at the left-handed compliment. “Thanks, I think. Let me know when you feel like you’re fifty and we’ll go dancing.”

“It’s a date,” he promised, pretending to mark a day on an imaginary calendar.

I turned my attention to the other side of the room only to find that my father-in-law had drifted off to sleep. Or pretended he had. I decided that either way it was best to let him rest. I’d take advantage of the quiet and read until it was time to feed him again.

After going over the same two paragraphs four times, I gave up. The clicks and beeps of various monitors were too distracting. Instead, I let my gaze wander around the sparsely furnished hospital room. All four beds were in use. In addition to Mr. Johnson and Rodger, Joe Adams had the bed on the left by the window, and Pete Smith had the one across from him. Joe, a frail little man in his nineties, had a habit of taking out his IV whenever he had to go to the bathroom. As sick as he was, he refused to use a urinal or a bedpan, stating firmly that he was not an invalid and could manage to take a leak on his own, thank you very much. Each time he got up, he’d pause at the foot of Pete’s bed, bow his head for a few seconds, then snap off a perfect salute to the now unconscious man lying there. Pete had never spoken or acknowledged Joe in any way. Pete’s wife had been at his side constantly to offer a sip of water or adjust his pillows. Sadly, every day he’d taken another step back in his recovery. Now the only sign of life was the slight rise and fall of the thin blanket that covered him.

I tried to imagine these men as they’d been in their youth. They were the warriors, the brash young men who’d marched off to save the world when it needed it most. Between fierce battles they’d flirted and danced the Lindy with beautiful young women who’d promised to wait for their return. I sent a silent thank-you to each of them and said a prayer that they’d get a chance to go home again.

A ripple of movement from the direction of Rodger’s bed drew my attention. Shock at what I was seeing sent a chill across the back of my neck and goose bumps racing down my arms. Still not quite awake, he’d begun to move. His head lifted off the pillow and started to weave side to side in a slow elliptical motion. Then his arms rose from his sides and his hands met above his head with the delicate grace of a figure skater preparing to go into a spin.

No. It can’t be. It’s my imagination. Everybody moves in their sleep, I thought.

But even as I tried to convince myself that what I feared wasn’t happening, the movements increased in speed and intensity—and I knew he was off his medication again.

I rushed out of the room to ask Susie how this could have happened, only to find out that there had been a shift change and Susie was gone for the day.

“Who sees to Mr. Carducci’s care tonight?” I asked.

“I do,” one of several unfamiliar nurses, busy reviewing charts, replied. “Is there a problem?”

“I think so. I was just in his room and there are signs he’s not taking his Zyprexa. Are you crushing it and giving it to him in his food?”

“He’s been getting all his prescribed medications and he’s been very compliant. There’s nothing in his chart to indicate he ever refuses to take it.”

“He’s supposed to get it in applesauce. If you don’t give it to him that way he hides it in his cheek and spits it out when you’re not looking. I’m telling you he’s not taking it and that could be very dangerous. He just spent eight weeks in the psychiatric unit. When he was admitted, he was ranting and severely delusional. He was so far gone, the doctors were afraid we’d never get him back.”

“I didn’t know that.”

How could you not know? Isn’t it in his chart? My God, he wasn’t out of the psychiatric ward for more than two days before he was readmitted with pneumonia. It can’t be that far back in his records.”

“Let me check on this and I’ll get right back to you. Are you his daughter?”

“No. I’m his daughter-in-law. He lives with my husband and me.”

“In that case I don’t think I can discuss this with you. There are issues of privacy we must abide by.”

“Yes you can discuss this with me,” I said, taking a deep breath in an attempt to remain calm. “My husband and I have a medical power of attorney that gives us authorization to speak on his behalf. I’m listed as the primary medical contact because I take care of him at home while my husband goes to work every day.”

“You should provide the hospital with a copy of both of those documents so they can be inserted into his file.”

“We did. They’re in there.”

“I’ll check on that too. Just give me a few minutes to verify all this and I’ll get back to you.”

I turned and stalked back to the room. I didn’t want to wait for answers, not again. I needed to know that when I left the hospital each night he’d be getting the care he required.

He was wide-awake when I got to his bedside, eyeing his dinner tray. “I can feed myself,” he snapped.

“No. I’m sorry, you can’t. The doctor wants me to feed you so you don’t eat too fast. You can’t swallow very well and he’s worried you’ll choke.”

“They think I’m a baby. Chew, chew, chew, swallow, swallow, swallow. It don’t make sense. I know how to eat.”

To prove his point he grabbed the spoon off his tray and started shoveling mashed potatoes into his mouth as if he hadn’t eaten in a month. Immediately, he coughed and wheezed, his eyes watered, and his face turned a deep shade of crimson.

“Open up,” I said. Using my fingers as carefully as possible, I removed a big hunk of saliva-diluted potato from the back of his mouth, grabbed all the silverware off his tray, and went to the sink to wash my hands. “Are you ready to let me feed you now?”

“Do what you want. You’re just like that lady. You think I’m a baby.”

I wanted to reply that he was behaving like a baby but I bit my tongue, reminding myself that he was old and sick and more than a little bit crazy. A lifetime of schizophrenia had left him deeply suspicious of everyone, and things were getting worse as old age and a number of chronic illnesses began to cause him even more stress.

“I don’t want no more,” he said after eating less than half of what was on his plate. “I can’t eat much.”

“Try a little more. Please? You need food to get well.”

“I said no.”

Rather than push him, I set the tray to the side, intending to get him to eat more in a little while.

Just then another unfamiliar nurse came into the room. “Mr. Carducci, you have to eat if you want to get better.”

“No you don’t understand—” I began.

“And you,” she interrupted, “can’t let him get away with this. He has to eat. Watch this,” she ordered. She mixed three pats of butter and two sugar packets into the mashed vegetables on the plate and set the tray in front of him. “He’s not a baby. He can feed himself. He’s being passive-aggressive because you’re his daughter. The longer you enable him, the longer he stays here. You should know that this isn’t a good place for him. Hospitals are full of germs and he’s too weak to fight them off.”

I was about to set her straight on the enabling comment when Rodger choked. This time his face turned blue, and he vomited the greasy, oversweet vegetables all over himself.

“I tried to tell you,” I shrugged, feeling a little smug at the nurse’s shocked expression. “He has a problem swallowing and he’s not supposed to feed himself because he overfills his mouth and then he chokes. That’s why I let him stop for a while.”

“I didn’t know—”she began.

“You refused to listen.”

“Now I’ll listen. But first I need to clean him up. I’ll get a fresh smock and some clean sheets and then we’ll talk.”

Rodger looked pitiful in his food-splattered gown, and the exertion had left him breathless and slumped over in the bed.

I reached for his arm to help him sit up. “Here, take hold of me. I’ll pull you up.”

“Get your goddamned hands off me,” he yelled, slapping my arm away. “Don’t you touch me. I know who you are, and I know what you’re trying to do. Get her away from me,” he ordered the nurse.

“Step back. I’ll get him.” She eased over to where I had been standing and helped him into the chair beside the bed. Once he was settled, she motioned for me to follow her into the hall.

“There he goes being passive-aggressive with you again. Sometimes they just can’t see that their kids are here to help.”

“He is not being passive-aggressive. He is schizophrenic and he’s off his medication. If you don’t get him properly medicated again, he’s going to have another psychotic episode and be back up on the sixth floor.”

“He was on the psychiatric ward recently?”

“Why don’t you know this?” I recoiled at having to ask this of another nurse.

“I can see that you’re upset,” she answered. “Give me a few minutes to get him resettled and I’ll be right with you.”

Anger sizzled through me as I watched from the doorway while the nurse and an aide stripped his bed, put on fresh linens, and got him cleaned up and into a new gown.

“I know what she’s doing. She’s killing me slowly. She poisons my food. You do it too. You’re all in on it but you can’t help it. You have to do what the boss tells you.”

“Who’s the boss?” I asked from the doorway. I knew what he was thinking from past rants like this, and they needed to know it too.

“You know. You can’t fool me. It’s the government. They’re in charge. They know everything about you, even before you’re born. Now they want me to die and you have to help them.”

The nurse signaled for me to go back out into the corridor, finished tucking him into bed, and joined me a few moments later.

“I’m sorry. I didn’t know he was a mental patient. Why is he on this floor?”

“He’s here recovering from the pneumonia he got while he was being treated for his latest breakdown. It’s bad enough they sent him home sick, but now he’s going to end up worse than when we started if he doesn’t get his antipsychotic medicine. It’s supposed to be crushed and added to applesauce so he doesn’t spit it out. And he has been spitting it out. I can tell by his behavior. This information is in his chart. Why isn’t anyone reading it?”

“I just came on duty. I haven’t had time to go over his chart in detail, but I will. And I’ll report this to the supervisor as well. I’m sorry this happened.”

“Thank you, but I don’t think that’s enough. I’m going to call the patient advocate in the morning and ask for a meeting with all his doctors and a representative from the nursing staff. This lack of communication didn’t start here. I don’t blame you personally, but it’s got to stop before he ends up dead or a permanent resident in a mental hospital.”

“I’ll tell the advocate to expect your call, and I’ll make a note in his chart to make sure your father gets his Zyprexa in applesauce from now on. You should go home and get some rest. There’s nothing more you can do tonight, and I’m going to ask the doctor to approve a sedative for him. You’ll both feel better after a good night’s sleep.”

I didn’t explain again that he was not my father. It didn’t really matter anyway. He was the closest thing I’d had to one in a very long time. As I walked to the elevator, I was already mentally preparing for the morning meeting, determined to do all I could to help him.

“Have a good evening,” the security guard called as I passed his desk on the way out.

“You too,” I answered automatically, my mind still focused on this latest setback. I wondered how many pills he’d thrown away this time and how long it would take for the drug to take effect again.

The cool evening air felt good on my face as I walked to my car. It helped ease the tension that had turned the muscles across my shoulders into taut steel cables. I needed to get home, eat a decent meal, and take a long, hot shower before the twinge behind my right eye became a headache that would keep me awake all night. But, once I got to the car, instead of starting it and driving the thirty-eight miles to get there, I sat in the darkening parking lot trying to figure out who the man really was that I’d welcomed into my home with love and affection.

For fifteen years I’d known him as my gentle, henpecked father-in-law. A man who longed for a little peace and quiet and always seemed eager to please. As saddened as I was by my mother-in-law’s passing, I had believed that living in my home, free from the constant yelling and criticism, he’d come out of his shell and begin to enjoy life.

The first time I met him, when Mike and I first started seeing one another, he reminded me so much of someone dear to me that I felt as if I’d already known him for a long time.

Mike was living with his parents then, renting a large room on the third floor of the row house he’d grown up in, while looking for an apartment closer to work. We’d spent the afternoon together, and then he’d taken me to his room to show me his drum set and to play a few songs before I had to go home to my kids. Recently divorced and not used to dating, I was shy and unsure of myself. I wasn’t comfortable being there at all and was relieved when he played the last note and offered to walk me to my car.

Descending the stairs, I noticed just the toes of a man’s shoes, cheap, black, and rubber-soled. Then white socks, sagging around his ankles, came into view. His pants were navy blue. Since he was still seated, I couldn’t confirm that their seat was almost worn through, but I knew instinctively that would be the case. It’s just the same with the brown pair he wears when the blue ones are in the wash, I thought.

I watched him dig his heels into the footrest of his chair, easing the back upright so he could stand and offer a hand in greeting. A too-large brown belt circled his waist, welts of strain scarring the surface at various places, marking recent fluctuations in his weight. His shirt was a whisper-thin old thing, tucked inexpertly into the baggy pants he pulled up to a height only very old men find comfortable.

I felt a smile of recognition cross my face when his features came into view. Everything about him reminded me of my Uncle Louie. The fact that Louie was not just my uncle but my great-uncle, my personal godfather, and the only Italian in my big Irish family made him appear to be a man of epic proportions. He was shorter, darker, fatter, and far more interesting than any of the skinny, red-headed, freckle-faced men who chased after us when my brothers, sister, and cousins and I couldn’t contain our wild selves a minute longer and tried to uphold the age-old Celtic tradition of fighting like a bunch of hooligans.

Whenever I’d stay with my godparents for a weekend, Uncle Louie would let me sit on his lap while he drank a beer or a highball. He even let me have a sip now and then. I didn’t like the taste of either one but I never told him so. I had an idea in my head that sipping whiskey just naturally went along with watching the Friday night fights, and I wasn’t about to risk losing that privilege for anything.

While Uncle Louie’s gaze remained glued to the tiny black-and-white TV screen, I’d watch the crinkly lines around his eyes deepen each time he’d take a drag off his Camel cigarette and wonder how he got those puffy little bags to grow beneath his lower lashes like that.

My God, I thought as Mike began the introductions, even his chair looks the same.

“Dad, I’d like you to meet Bobbi.”

Shaking off the memory of one person in order to acknowledge the presence of another, I greeted the man who would become my father-in-law, convinced I’d seen something familiar in him. They have the same light in their eyes, I thought with affection.

Sitting in a hospital parking lot so many years later, I was just beginning to discover how very wrong I’d been.

Had he been pretending all these years? Is the real Rodger the one who announced to the nursing staff that I’m useless and no damned good? Does the medicine he takes every day allow him to be himself, or does it mask his true nature? Who is this man who lives in my house and paces the halls late at night?

As hard as I tried to block out the thoughts, I couldn’t stop the images from coming. Flashes of movie maniacs appeared, unbidden. Norman Bates from Psycho leered through a curtain of memory only to be replaced by rapid-fire clips of Jack Torrance careening through the halls of the Overlook Hotel in The Shining.

“Stop being ridiculous,” I said, shaking off the mood I’d created and starting the car.

As I turned onto the highway I told myself that my thoughts and the fact that I was now talking to myself in an otherwise empty car were more an indication of my mental state than his.

I knew from my research that schizophrenics aren’t the knife-wielding lunatics often portrayed in movies. Most of them are timid, introverted people who want to be left alone. Unfortunately, very often when they get their wish they end up homeless, in the hospital, or in jail. And sometimes, even when they aren’t left alone, those things happen.

Where did I go wrong? What did I miss and how can I make sure this doesn’t happen again? Those questions and more went unanswered as I covered the miles between the hospital and home, my mind and body too tired to cope with the guilt I felt at that moment.

Despite all my good intentions, I’d let him down.

“Just think about it,” Rodger called out just before entering his sitting room. “It’s too much for you to worry about. I can take my medicine myself.”

Can you hear me, God? I prayed, turning my back on him and putting the rest of the dishes away. Hold me in your love and light and take this anger away. And one more thing. Please, for just little while, can you make him be quiet?


Interested in reading the rest of the book? You can buy it on Amazon.

This is an excerpt of Confessions of an Imperfect Caregiver.

 

Written by Bobbi Carducci
Bobbi Carducci was an in-home caregiver for her mentally and physically ill father-in-law, Rodger, for seven years. Her blog, The Imperfect Caregiver, is written for women and men caring for loved ones in their home. She hopes the honest depiction of her experiences will be of comfort to caregivers now coping with the challenges she faced and that it will bring them a sense of peace knowing they are not alone when experiencing the doubt, frustration, and guilt that come with doing the most difficult job you will ever love. Bobbi is a writer by profession, her book Confessions of an Imperfect Caregiver is due to be released by Open Books Press on July 26, 2014. Bobbi was the luncheon keynote speaker at the 26th Annual Pennwriters Conference in May 2013 where she also taught an intensive workshop on writing creative nonfiction.

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8 Comments

  1. I understand. Hospital stays are not good. Medicine mixups and not giving you credit for being on top of the situation. I would not leave my husband because I feared for mixups.

    Reply
  2. I understand those feelings of anger. It’s really fear. Fear that you’re not up to it. Fear that it will never end. Fear that you’ll go insane before it ends. And I completely understand the absurdity of hospitals. We caregivers are already trying to hold onto our own sanity and then we try to navigate a hospital stay where it can seem like no one is in charge. One would think a full-time caregiver would get somewhat of a break in a hospital – that the professionals would take over. Nope. The hypervigilance for a caregiver is worse in a hospital. I’ve frequently wondered why hospitals have patient charts when no one seems to look at them. I’ve had many conversations with RNs and CNAs about information they would have known had they looked at the chart. It’s scary how common it is.

    Reply
    • I could not agree more. It is incredibly difficult when the person you are caring for goes into the hospital or acute care. The left hand does not know what the right hand is doing and it was up to us (me and my siblings) to keep THEM straight. I also felt like I kept having the same arguments with staff day after day. we ensured someone visited my dad every single day – sometimes multiple visits – to be sure he was well taken care of. And even then, my sister had to point out the fact that he appeared to have a UTI to the staff !!! that was such a hard time. Best wishes to all of us caregivers!

      Reply
  3. Like so many of the patients I took care of as a home health nurse and as a neuro nurse pulled to the med floor in Fairfax Hospital. You are an angel, Bobbi. 🙂

    Reply
  4. I can relate to this article in so many ways!

    Reply

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