Family Fiction posted May 5, 2024


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Finding meaning in self sacrifice

The Caregiver

by estory

     Emma looked out of the kitchen window of her father's house, where she had been living ever since he had the stroke. The sky was still overcast. It had been overcast for days. Or was it weeks, or months? Sometimes it seemed to her that she was dreaming a terrible dream from which she could not wake up. In this terrible dream, she had to take care of her father morning, noon and night, with no end in sight, leaving her own life behind. Or was it the life she had lived before he had the stroke that had been the dream?
 
     It was all becoming a blur and she could hardly remember her apartment or the job she used to have. She could remember going to movies and concerts with Jimmy, sitting with him in restaurants and bars. She could vaguely remember planning some kind of trip to California, a hike to El Capitan and driving through the redwoods. She had always dreamed of going to California. But it was hard to say. She hadn't spoken to Jimmy in days. Or was it weeks? She had to give up her life and move out of her apartment into her father's house when he had the stroke. 
 
     She had to give it all up. Her siblings had spouses and families and problems and they agreed she was the best suited to care of him. They agreed to let her use her father's credit card for her living expenses. After all, someone had to take care of him. If she left for California, who would take care of him?
 
     She turned away from the window and looked at the kitchen clock. Her life now seemed to go by that kitchen clock. Every morning at eight he had to have his medicine. Every evening at eight he would need his medicine again. Every four hours during the day he hd to be fed. 
 
     It was time to give him his morning meds. She opened a drawer, took out the pill grinder and put one of her father's pills in it. She had to carefully grind it into a fine powder. The she had to completey dissolve the powder into exactly a half a cup of water in a clean, plastic container. Then the mixture would have to be injected into the valve in his feeding tube with a syringe, because the stroke had frozen his throat muscles and he could no longer swallow. The pill grinder, the syringe and the plastic container for the water and the food all had to be carefully cleaned. His morning and evening pills had to be kept organized; blood pressure and iron in the morning, colesterol and blood thinner in the evening. The kitchen was beginning to feel like a hospital lab to her.
 
     The master bedroom was beginning to feel like a hospital room. The hospital bed with its safety railings had replaced the old, wooden framed king sized bed her parents had once slept in. The urine bag and the catheter hung from one of the railings. This too had to emptied twice a day because he could no longer urinate normally. The machine she sometimes had to use to suck phlegm from his throat stood next to the head of the bed. His walker and wheelchair stood parked along one wall. Against the opposite wall sat the commode. It seemed her life now was spent helping her father in his life between these things.
 
     It was time to give him his medicine. He looked up at her when she came into his room. His face was still drooping, no longer the face that used to smile at her when she came to visit him. But there seemed to be something in his eyes that made her think he was grateful she was there.
 
     "Morning dad," she said as cheerfully as she could. "Time for your medicine." She fumbled the valve of the feeding tube out of his nightgown. "Did you sleep alright?" she asked him. 
 
     He could not speak. He looked up at her as if trying to remember how to thank her.
 
     While she made the injections of medicine and water, alternating, and carefully opening and closing the valve of the feeding tube, she looked out of the window. She thought she could see a break in the clouds. But she couldn't be sure. She was beginning to wonder if it would ever clear up. 
 
     Her father reached over with his good hand and patted her arm, looking up at her with thankful eyes. He seemed to be trying to say something to her.
 
     "How was that, dad?" she asked him, trying to smile. "Better? Are you feeling better today?"
 
     As she made the injections, she couldn't help thinking of all the things she had once dreamed of. But if she left for California, she thought to herself as she looked at him lying helpless in his hospital bed, then who would take care of him? Who would empty the urine bag into the toilet? Who would empty the carton of protein liquid into the container, fill the other container with water, and inject the food and the water one after the other four times each with the syringe, four times a day, and then clean all the containers and the syringe? Who would help him to the commode, who would help him get dressed, who would help him into his wheelchair? Who would sit with him through the long hours of his day?
 
     "Here we go, dad," she said as cheerfully as she could as she pulled him up and swung his legs out of the bed. She helped him into his sweatpants, carefully putting the urine bag and the catheter through one of the pant's legs. Then she pulled a shirt over his head and helped him put his arms through the sleeves.
 
     "That's it, dad," she said, "One, two. There you are." Then she helped him into the wheelchair. She wheeled him into the living room and turned on the TV.
 
     "Do you want to watch TV?" she asked him. "Look. Here's the Waltons. Your favorite show."
 
     While he stared at the TV, she sat next to him. Somehow she could remember sitting on the floor at Christmas time, and her father giving her the Noah's ark he had made for her, with little, wooden animals in his basement tool shop. It must have taken him weeks to make it for her, after work, in the evenings. She could remember him showing her how to pedal the tricycle he had bought for her. Flying that kite for her. Letting it out into the sky over her head on its string.
 
     Now it was she who was pushing him around in the wheelchair, letting the kite out for him. Helping him in the days before his last journey. 
"I love you, daddy," she said softly to him. He looked up at her. But he couldn't say anything. 
 
     It was hard living in all that silence, only able to guess at what he was thinking, what he wanted to say. It was hard remembering the life she had once seemed to live.
 
     Matt, her older brother, lived in New Jersey still with his wife and  two kids in high school so there was no way, as he said, that he could take care of their dad. Marjory, her older sister, was also married with two kids of her own. She lived in North Carolina  not far away but her husband was in AA and her son was on the autism spectrum, so she had her own problems to deal with, as she put it. Emma was divorced with no kids. When her parents moved to North Carolina from New Jersey to be closer to their daughter and their new grandkids, she had moved as well and lived just a few miles away. After their mother died, it was she who looked in on their dad to make sure he was OK and drive him to his doctor's appointments.
 
     When he had the stroke, they had rushed him to a hospital in Raleigh for a couple of weeks. She visited him there. While she was visiting him a social worker in the hospital told her they would have to decide whether to try and take care of him at home, or send him to a nursing home. They would have to decide by the end of the week. She told her brother and sister she couldn't bear the thought of him sitting in a room by himself in a strange house full of strangers. She could imagine him wondering where he was and wondering what had happend to the people who loved him. So that was that.
 
     Now here she was sitting in the house watching her father sleeping in his wheelchair, while the world was going by outside the window. It all seemed like a bad dream. She could vaguely remember the job she used to have and the Thursday mornings when she had off from work and she would walk around the neighborhood watching the sky brightening above the rooftops. She remembered driving up to the lake or up to the flea market. Picking up her dad on Sunday mornings and taking him to church. Every time she came for him he would be wearing his jacket and one of his old ties. After the service they would have lunch and then work on a puzzle together.  He liked mountains and she had bought him a jigsaw puzzle of a swiss chalet high up in the mountains and they worked on that puzzle together until it was finished. She wished she could take her dad to that place. Someplace where he could be free from his stroke again.
 
     When her father woke up she wheeled him into the kitchen to give him another round of his food. The sky outside the window was still grey. She turned on the radio and tuned it to the classical station he liked. There was a symphony playing. He looked up at her.
 
     "Do you like this music?" she asked him. "Isn't it a nice piece of music?" It seemed that he was tapping his fingers on the armrest of the wheelchair in time to the music. But he couldn't say anything to her. "It's nice music, right?" she said as cheerfully as she could.
 
     Then the phone rang. It was a nurse from the urologist. It was time to make an appointment to have his catheter changed. Once a month she had to take him to have his catheter changed or he could develope a urninary tract infection and it could be fatal. She would have to help him into the shower, dry him off, get him dressed in a clean shirt and sweat pants. She would have to help him put his arms and legs through the sleeves and pants legs. Button up his shirt. Put on his shoes. Tie his shoes. Comb his hair. Help him into his wheelchair. Take him out to the car. Drive him to the appointment. Wait an hour in the waiting room for the procedure. Drive him home. Get him out of the car and into the house. Feed him. Go to bed herself and lie there listening for him trying to get out of the bed by himself. It was like a bad dream.
 
     She looked at him looking up her helplessly. Without her he would die. And everything he had been, would be gone. All the years he had worked to keep a roof over their heads, send them to school and take them to church would be nothing more than pictures, memories. Old pictures in photograph albums. Old Christmas cards saved in an envelope. Outside the window the sky was still overcast. But she tried to imagine him climbing up the mountains to that little chalet in the puzzle. 
 
     The phone rang again. This time it was Marjory. "How is he?" she asked.
 
     Emma took a deep breath and sighed. "The same," she said.
 
     "There's no improvement?"
 
     "No, Marjory."
 
     "So he's still not talking."
 
     "He's still not talking."
 
     Then there was a silence. It seemed that neither one of them could bring themselves to say what they were feeling.
 
     Emma felt her heart start to beat as she thought of all the weeks she has spent in the house by herself taking care of her father. Everything she had to give up while her sister and brother were still out there in their lives. "Do you think you could come over and watch him on Saturday for a while? I've been kooked up in the house for so long I'm going crazy. I'm going out of my mind here."
 
     "Ralph has therapy on Saturdays," Marjory said quickly.
 
     "Marjory, I need a little break here. Can't Clark take him to therapy this one time?"
 
     "He has an AA meeting on Saturdays."
 
     "Please, Marjory. I just want to take a ride to the lake," Emma said.
 
     Marjory seemd to be wrestling with the phone. Then she said: "Well, maybe I could get over there on Sunday. I'll have to bring Ralph. But I can only stay for the afternoon. I have to make dinner for everybody over here."
 
     Emma breathed a sigh of relief. "OK," she said. "He'll be in his wheelchair. You just have to watch him. And it might be nice for him to see Ralph again. Maybe it will bring back some memories for him."
 
     She drove up to the lake that Sunday. She found herself thinking of how much she had enjoyed driving up there. But while she sat on the bench looking at the water and the clouds reflected in the water, all she could think of was how much her father had once liked sailing and how much he would have liked to sail that lake. How she would have liked to sail it with him.
 
      The speech therapist came on Monday. She showed her dad how to do an exercise she thought would help him. Putting a towel under his chin and raising his chin and pressing his chin back down into the towel. She said it would get his throat muscles moving again. She wanted him to do this in repetitions of twenty times, three times a day.
 
     Emma watched her father looking at the therapist as if he did not understand. The therapist wanted him to try and say simple words over and over again. Box. Door. Eat. Sleep. Up. Down. Her father just looked at the therapist as if wondering who she was and what she wanted from him. 
 
     "He's not making much progress," the therapist told her.
 
     "He has trouble hearing," Emma tried to explain. 
 
     "You have to push him in these exercises," the therapist told her. "You have to keep pushing him."
 
      After the therapist left, she looked at her father sitting in his wheelchair, looking at her as if wondering what they had said about him. He looked tired, she thought. Tired of all this. 
 
     After she gave him his food and medicine injections with the syringe, she looked at him sitting up in the hospital bed. His eyes were closed and his hands were folded. He looked like he was praying. She wondered what he could be praying for.
 
      She could remember how he used to show her to kneel beside her bed and pray. What was it that he had taught her to pray? 'I am little, I am weak, Now when I lay me down to sleep, I pray the Lord my soul to keep.' 
 
     Who would have thought back then that he would end up like this, in a hospital bed? That he wouldn't be able to walk or put on his clothes? That he wouldn't be able to talk? She drew the blinds and kissed him on the forehead. She turned out the light.
 
     The next moring the sky was still grey. Maybe there was a chink of light in it. She emptied his urine bag, gave him his medicine, helped him into his clothes and into the wheelchair. She wheeled him into the kitchen. 
 
     The phone rang again. This time it was her brother, Matt.
 
     "I just wanted to see how things are going down there," he said.
 
     "They're not going good, Matt," she told him. "I can hardly get him out of bed anymore by myself. I don't know how much longer I can do this. I need help. This is like a twenty four- seven thing."
 
    She could hear him breathing on the other end for a minute. It sounded like he was switching the phone from one hand to the other. Then he said: "Well, maybe we'll just have to put him in a home."
 
     "No, Matt," she said quickly, firmly. "Those places aren't homes. I don't want to put him in a place like that, by himself. He would be wondering what was happening to him. I couldn't do that to him."
 
     "Emma," her brother said, "What am I supposed to do?"
 
     "I don't know," she said.
 
     "I can't just quit my job and move down there, Emma. I have a family of my own here."
 
     "I had to quit MY job. Somebody had to do it. He needs help. But this isn't fair."
 
     "I understand that. But I've got a mortgage. I've got a wife and kids to think of."
 
     "So what are we going to do about this?"
 
     "What about Marjory?"
 
     "She's got Ralph. And Clark's in AA again."
 
     "Well, we might not have much of a choice, then, Emma," her brother told her. 
 
     "I'm not putting him into a home," she said, looking at him sitting in his wheelchair, staring at her as if wondering what they were saying about him, wondering what was going to happen to him.
 
     "It's alright, dad," she said to him, trying to smile, after she hung up. He looked out of the window and pointed.
 
     "Do you see something out there?" she asked him, bending over next to him. "Do you see a bird, or a deer?"
 
     She could remember sitting with him before he had the stroke, watching the deer in the backyard. He liked to watch the deer. After their mother died he used to walk around back there, sprinkling deer corn for them. He used to fill the birdfeeder on the deck the way their mother used to fill it every moring, and watch the cardinals and bluebirds when they came. 
 
     "Someday you'll be able to watch the birds flying all day, and the deer coming up from the woods," she said to him, brushing a tear off of her cheek.
 
     That night, after she put him to bed and she had finally fallen asleep after hours of listening to hear if he was trying to get out of the bed by himself, she had a strange dream. In her dream, she had left her life down in the valleys to hike with her father up into the mountains. Her father was young again, the way she rememberd him when she was a girl, showing her the world and the things he loved in it. They had climbed above the tree line and in the brilliant sunlight close to the clouds, an inspiring rock face loomed before them, ending in a snow capped peak. Under this peak was a meadow blooming with wildflowers. There was chalet on the far end of it, and her father was pointing it out, telling her they could have lunch there before carrying on. He was happy, he was excited about continuing on. He wanted to show her a place that he had been to in his past, and remembered fondly. Another man was there, sitting on a bench along the path, a kindly looking man with a beard, in a robe. The man told them of a path he knew, a path that would take them further up into the mountains, to a place from which they could look down into a whole, other country.
 
     In the morning, it was still grey, still overcast. But it seemed to her that the clouds were lifting. She even thought she could see mountains in the clouds. She opened the blinds in her father's room and said: "Look at those mountains in the clouds, dad." He looked up at her and then out of the window.
 
     It was the beginning of another day. She changed his urine bag, got him to the commode, gave him his medicine and his food, dressed him and got him into the wheelchair. Then she sat with him in the living room and watched a show about the mountains, the Alps, on TV.
 
      "You like the mountains, don't you, dad?" she asked him. "Someday I'll take you to see the mountains again." Then she put her head in her hands and said to herself: 'What's happening to my life?'
 
     After she had put him to bed and turned out the light,she stood in the bedroom doorway. She could hear his breathing. She could hear him teaching her to say that little prayer again: 'Now I lay me down to sleep, and I pray the Lord my soul to keep.' On the wall behind the kitchen table was a framed plaque of two hands clasped in prayer. In the silence, she thougth she could hear someone saying to her: 'This is what your life is; the answer to someone's prayer.'
 
     But she could have been dreaming.
 
     After she had gone to bed and turned out the light, she lay in bed in the darkness. Everything she had once dreamed of, seemed like another world. Jimmy might not have ever existed. The mountains she loved seemed so far away that they might have only been something she had seen on a TV show. The job she had once had, her apartment, her plans to go to California; they didn't seem real anymore. All she could think of was to be there for her father when he woke up. To sit with him, hug him, tell him how much she loved him, to make his last days as comfortable as she could. 
 
     And it seemed to her then that this is what her life had been, this is what had made it worth living. The answer to someone's prayer.
 
     After her father died, this is what she told people, when they asked her what she had done with her life. She had been the answer to her father's prayer. People would ask her, years later, 'What did you do with your life?' And she would tell them: 'I took care of my father.' And they would nod and say, 'That was a wonderful thing you did, Emma.'
 
     And she would think of her father waiting for her, up in those mountains.




This story is dedicated to all those who served as caregivers at one time or another in their lives. I'm sure they will attest to the dedication, the love, and the perseverance, the sacrifice of doing that, to make someone else's life a little brighter, especially in their last days. It is something that gelled in me from the experience of taking care of my own father when he had his stroke, for nine months, with my sister. And it made me realize that the thing that makes life living is living it in the service of the people around you, the people you love, maybe even the people you don't love. Once again, I hope I get people thinking. estory
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