| The Uneasy Road of Family Caregivers | ||||
More than 700,000 people in Taiwan are disabled, functionally impaired, or afflicted with dementia. Over half of them are cared for at home. A caregiver’s role can be challenging, especially if they are the sole or primary caregiver. Such people need support and time off to get through the toughest days.
An Older Person Taking Care of an Even Older Person Lin Ming-ji, 68, has taken care of his 93-year-old bedridden mother for three years. At night, he sleeps in her room to keep an eye on her. Every morning when they wake up, his first order of business is to help her defecate. When it’s time to eat, he grinds her food before feeding it to her, spoonful by spoonful. On nice days, he takes her out for some sun. He also takes her out with him when he volunteers. He takes good care of her, and in so doing he honors the person who gave him life and who cared for him when he was young. Taiwan’s population is rapidly aging. According to projections from the Ministry of Health and Welfare, the number of persons needing long-term care on the island may top a million by 2026. Of these, over 300,000 will be elderly and enfeebled. Their caregivers are likely to be their elderly spouses or their children, who are themselves advancing in years. Photos by Yan Lin-zhao
Waiting for That Happy Moment By Liao Ming-yu Translated by Wu Hsiao-ting Photo by Yan Lin-zhao When he becomes frustrated taking care of his mother, he tells himself not to let it get to him. “She’s sick—that’s why she needs my care,” he reminds himself.
It’s not uncommon for a caregiver to experience burnout, chronic fatigue, or sleep deprivation as they strive to provide good care for an aging or functionally impaired loved one. That’s why it is essential that caregivers ask for help when they need it. It’s also advisable that they not quit their job or give up their hobbies. Regular breaks and something to take their minds off caregiving for a time is often what it takes to keep a caregiver going. Lin Ming-ji (林銘基) is his mother’s principal caretaker. He once was under so much pressure he felt he was near the breaking point. It was his volunteer work for Tzu Chi that kept him sane. He helps repair equipment for the foundation’s assistive device program. He finds that when he is completely focused on his repair work, his mind settles down and he feels at peace. Every morning, Lin freshens his mother up and feeds her breakfast. Around ten, he carries her to his car, settles her inside, and drives to the Tzu Chi Yilan office, near where they live in Yilan, northeastern Taiwan. Once there, Lin sets to work repairing second-hand electric beds, wheelchairs, or other similar items while his mother sleeps peacefully in his car. These assistive devices will be provided for free to families with disabled or functionally impaired members. While he takes a breather from his job as a caregiver by fixing the equipment, he is happy knowing that the devices, when restored to proper working order, will ease the burdens of other caregivers. Lin’s mother is 93. She had a fall three years ago and fractured her spine. Considering her advanced age, the doctors at the hospital decided not to operate on her. The only thing Lin could do was to take her home to recuperate. Bedridden, she was unable to tend to her own needs. Every time she was moved, she’d knit her brows and wail out of pain. Fortunately, Lin and his family had the help of a hired foreign live-in caregiver at the time. In 2020, just as COVID-19 was sweeping across the world, that foreign caretaker returned to her home country. Then Taiwan’s government tightened their control on the entry of foreign laborers into the island, leading to a shortage of home care workers. Unable to find hired help for his mom, Lin was stumped. It just so happened that his job as a tour bus driver had also been severely impacted by the pandemic. No one wanted to travel for sightseeing during this time, which essentially put him out of work. He thought to himself, “Maybe this is an arrangement made by heaven?” So, just like that, he bravely took on the job of caring for his mother. Lin’s mother was living with him and his family in a hilly community in Keelung, on the northern tip of Taiwan, when she suffered the fall. To get out of the home, they needed to negotiate some steep steps, which made it difficult to take her to the hospital or for an outing. As a result, Lin decided to move with her into a metal house next to his sister’s home in Yilan. Ever since then, Lin has been his mother’s principal care provider. He is no longer young himself, being in his late 60s, but he doesn’t feel it is too much of a physical strain to tend to his mother’s daily needs on his own. He is still fit enough to move her out of and back into her bed every day. He finds changing her diapers or washing her the most challenging and frustrating of his responsibilities. His mother sleeps most of the time, and in her nebulous state of semi-wakefulness, she often doesn’t know that the person taking care of her is her son. She only knows he is a gray-haired man. As a result, she often puts up a big fight when he is trying to wash her or change her diapers. She is embarrassed to have her intimate needs cared for by a man. When that happens, he says to her: “Mom, I’m your son! When I was little, you cared for me like this too. I grew up under your loving care. Now it’s my turn to care for you. Don’t be afraid.” It doesn’t matter whether his mother understands him. All Lin knows is that life has to go on. Lin has been a Buddhist for many years. As such, he believes he and his mom couldn’t have become mother and son without forming karmic affinities over many lifetimes. Cherishing the bond between them, he tells himself not to let any difficulties he encounters in the process of taking care of his mother get to him. “She’s sick—that’s why she needs my care,” he says to himself. Lin’s mother is only lucid about three or four hours a day. He makes good use of those precious hours by chatting as much as possible with her—about things that happened a long time ago or about their family members who are no longer around. His mother is always remarkably clear-headed during those times and talks fluently. Lin enjoys immensely the back-and-forth conversations with her. “That’s when I feel happiest,” he said. Even though Lin feels he can still handle his mother alone, his family was worried that caring for her day and night, day in and day out, would eventually take a toll on him, especially as he was getting on in years himself. That’s why he applied at the beginning of this year for home care services offered by Taiwan’s government under its long-term care program. He especially hoped that a female care provider could come to his home regularly to bathe or shower his mother. His application was denied, however, because when the foreign care provider who used to care for his mother went back to her home country, she didn’t follow due exit procedures, thus disqualifying him from the government services. Fortunately, Lin’s wife later quit her job and joined him in Yilan, so he now has her to help care for his mom. On a gloriously sunny morning following days of rain, Lin drove to the Tzu Chi Yilan office, parked his car next to the warehouse used to store assistive equipment, and said to his mom in the car: “Be good and take a good rest in the car. The sun is out today. Soak in the sunshine and make your bones stronger!” It used to be his mother who told him to be a good boy; now their roles have been reversed. Life is a cycle, and his mother is now his sweetest burden.
When a Professional Care Provider Becomes Her Mother’s Caregiver Text and photo by Liao Ming-yu Translated by Wu Hsiao-ting As a professional care provider, she has cared for many older people afflicted with dementia. But caring for her own mother with Alzheimer’s has still proved a difficult challenge.
Zheng Qiu-yun (鄭秋雲), 62, is a professional home care worker. She is also single. That’s why she thought it a matter of course for her to become her parents’ caregiver when they fell ill. A bed with handrails is the first thing Zheng sees as she walks through the door to her home. Next to the bed is a wheelchair. Before she goes into her room to change out of her volunteer uniform, she walks over to the bed to check on her mother. Zheng’s younger sister has recently moved back with her and their mother. With her around to help tend to their mother’s needs, Zheng finally has more time for herself. She uses that precious time off to volunteer. For her, volunteering is the best way to recharge her batteries and regulate her emotions. Zheng used to run a boutique in Taichung, central Taiwan, but she lost all her store’s goods to a break-in burglary more than 20 years ago, and ran up a huge debt as a result. It was only with the help of Buddhism, with which she came into touch later, that she came to realize life’s impermanent nature. Since everything we own is ephemeral, it’s best not to become attached to anything. That way of thinking eventually helped her to come to terms with her loss. After paying off her debt, she changed careers and became a licensed home care provider. Besides working as a caregiver, she also began serving actively as a Tzu Chi hospital volunteer. Being warm-hearted, loving, and patient, she gained the trust of many older people and medical professionals. Four years ago, her then 89-year-old father fell down and required care. Zheng moved back to her childhood home in Yilan, northeastern Taiwan, to help take care of him. He passed away three years later. But then her mother’s health rapidly declined. She was diagnosed first with Parkinson’s, then dementia. She became unruly. “She began to get easily depressed, agitated, and restless,” Zheng said. “She refused to take medicine. She wore a permanent frown and was quick to lash out. When I drove her anywhere, she’d let loose with a torrent of abuse whenever we stopped at a traffic light. Just me leaving the car for five minutes to buy stuff could set her off screaming and crying.” Having cared for many older people suffering from dementia, Zheng knew that her mother was displaying dementia symptoms and that things would only get worse. She tried her best to build a mental fortress so that she would have the fortitude to take whatever came her way. Zheng has now cared for her mother for about a year. Even though she is mentally prepared, there have been times when she felt she could not cope. For example, “My mom would ask to go to the bathroom every five or ten minutes at night. I couldn’t get any sleep.” There is only so much one can take. When Zheng feels she is losing it, she tells herself: “She’s my mom. She’s sick. She isn’t doing this on purpose.” A Tzu Chi volunteer has to abide by ten precepts. One of them is “Respect your parents and be moderate in speech and attitude.” She uses this as a reminder to be patient towards her mother. At night, when she lies down in a bed next to her mother’s bed to go to sleep, she chants the Buddha’s name to calm her mind. She can’t predict how much longer her mom will need her care. She prays for more patience and strength, and thinks back on the hard work her mother put into raising her. If for nothing else, she wants to do a good job taking care of her to repay her love. Zheng has worked as a care provider at a seniors’ daycare center in Su’ao, Yilan, since her father passed away. She takes her mother with her to the center, where she receives proper care while she works. When she has volunteer work to do and there is no one to look after her mom for her, she takes her volunteering too. For example, at the end of last year, Zheng and her fellow volunteers pitched in to help lay paving bricks for a Tzu Chi recycling station in Luodong, Yilan. While she worked hard in the sun moving bricks, her mother sat in a wheelchair under a tree nearby watching the work. That was one of the most peaceful moments she has enjoyed with her mom. Though Zheng is a professional caregiver, caring for older people at work is a different matter from caring for her own mom. She can call it a day at work, but there is no such thing as “calling it a day” when it comes to caring for her mom. Zheng knows that she isn’t getting any younger and that her strength or stamina is sure to decline down the road. She has told her younger siblings that they all have a responsibility to help care for their mother and that if one day none of them is able to care for her, they will have to make other arrangements for their mother to age in peace. Fortunately, though her siblings all have their own families to take care of, they do their best to help out. Whenever she asks for help, they never turn a deaf ear. On this day, Zheng looked at the time and saw it was time to go volunteer. She quickly changed into her volunteer uniform. “We are delivering a second-hand bed to the home of an older person who lives alone,” she explained. Both Zheng and her younger sister were sporting large dark circles under their eyes. Their mother must have been refusing to sleep at night again. For Zheng, a change of work is as good as a rest. She headed out for her volunteer assignment, seizing another opportunity to recharge her batteries.
Accompanying Them Through Their Old Age Text and photo by Liao Ming-yu Translated by Wu Hsiao-ting My parents fell ill one after the other, starting 20 years ago. In the process of caring for them, I learned how to age in peace, how to communicate with other family members about providing better care for our loved ones, and how to make difficult choices of life and death.
As people age, their bodies gradually weaken, and they eventually lose the ability to care for themselves. They are like withered leaves on a tree, swaying this way and that with the wind, barely hanging on to the branches. Many people make plans for their lives, but how many have associated their old age with withered leaves? And how many have thought about the possibility they will need to become guardians of those leaves? My parents fell ill, one after the other, beginning 20 years ago. Though I was totally unprepared, I became their main care provider. My father had a fall at 83, rendering him unable to take care of himself. I was an office worker, not yet 40 at the time. My siblings and I applied for the services of a foreign live-in care provider for my father. In the beginning, my parents were firmly against a foreign caretaker moving in, one who didn’t even speak their same language. However, they eventually accepted the arrangement—there just wasn’t a better option. For me, the services provided by these foreign care providers were a godsend. My father passed away ten years after his fall, but by then my mother’s Alzheimer’s had worsened. The foreign caregivers that came into our lives helped me through the darkest and most difficult periods of my life. I cannot overemphasize my gratitude for them. My mother has lived with Alzheimer’s disease for 14 years now. Alzheimer’s is the most common form of dementia. One’s memory is like a leaf slowly being eaten away by an insect. As the disease progresses, a patient might develop delusions and become increasingly agitated. Their caregivers might as a result be badly affected and become depressed, anxious, and agitated too. The pressure might overwhelm them, making them feel suffocated. Famed Taiwanese writer Chang Man-chuan (張曼娟) is her parents’ caregiver. She once wrote: “The caregiver of a loved one is like a person trying to deactivate a ticking time bomb while carrying another ticking time bomb on themselves. They don’t necessarily succeed in deactivating the bomb, and when the worst comes to the worst, the bomb they are carrying explodes in the process.” In the process of caring for my parents, I often felt I had been injured so badly by the explosion of the bomb I carried that not a single inch of my skin was intact. Having experienced what I have, I’m always worried for any sole care provider I meet. There were laughter and tears in my journey as a caregiver, but the tears outweighed the laughter. On the day my father had the fall—he had fallen by accident into a large ditch—none of us were too alarmed. He seemed okay and had no detectable injuries, so we decided to wait until the next morning to take him to the hospital for examination. We couldn’t have expected that he would experience difficulty breathing that very night. I let him sleep in my arms that night because he said he felt more comfortable half lying like that. When we arrived at the hospital the next morning, his condition had worsened to the point that a lung abscess had developed. Before he was rolled into the intensive care unit, he exerted all his strength to tell me, “I owe you so much. I provided poorly for you—you even had to put yourself through school—and yet all along you’ve been the one looking after me.” Despite what my father said, I never feel he owed me. I feel I owe my dad even more. Our family used to be very poor. Hard pressed to make a living, my parents would often quarrel over money. After my mother developed Alzheimer’s, she forgot almost everything good about my father—all that she remembered was how badly he had treated her. As a result, she’d often fling abuses at him. Being of limited mobility, my father couldn’t leave home on his own and could thus only quietly endure her abuses. One time, he must have had enough of it because he called me at work to vent. Do you know how I responded? I told him I was very busy and asked him to call my older brother instead. How helpless my father must have felt at that moment. I regretted my response as soon as I hung up. I felt awful for being so unkind to Dad. Dad departed from the world at 93. In the last few years of his life, he gradually lost all hope. My mom was living with me at my place at the time; Dad lived at our old home, looked after by a foreign care provider. Every morning, I’d take my mother to a daycare center on my way to work. When I got off work, I went to check on Dad to see if he had any needs before I drove to the daycare center to take Mom home. One day, I was very tired as I was driving home from the daycare center with Mom sitting next to me. To make things worse, Mom was having one of her fits and couldn’t stop throwing insults at me. My temper got the best of me, and with my hands clenched tightly on the steering wheel, I yelled at her: “Why don’t we die together?“ My voice was so loud it drowned out her words. She froze. I was stunned silent too. A thought flashed across my mind: “If I couldn’t carry on anymore, what is Dad to do?” The older our loved ones get, the more we must help them live with dignity. This is especially true in the case of those who are functionally impaired. No one wants to lose the ability to take care of themselves, let alone lose control over their bodily functions. Being compassionate and thoughtful is the least we can do. After his fall, my father could still move around on his own, though with a lot of difficulty. Often his bladder or bowels would let go before he reached the bathroom. When that happened, panic would be written all over his face, and he’d look over at me and say with an embarrassed smile, “I’m sorry, I just couldn’t hold it.” I’d step forward and, extending my arms to support him, would respond, “It’s okay. Let me walk you to the bathroom and help you clean up.” Who would have the heart to scold their aged parents for losing control of their bladders or bowels, especially when we think of how they used to take care of us when we were young, changing our diapers and cleaning up any mess we made without a word of complaint? Compared with my dad, I have felt even more for my mom. People with Alzheimer’s gradually lose all ability to care for themselves and even to communicate their thoughts. My mother is 14 years into her dementia now. She can no longer verbally express herself. But I have not given up trying to engage her in conversation. When she occasionally responds lucidly, it’s enough to make me happy for a long time. Because Mom’s chewing ability has also degenerated, her food has to be ground into a paste. Once when I was fixing dinner for her, she waddled clumsily back and forth near me, talking gibberish. I thought she just wanted to chat, so I didn’t pay her much mind. Later, when I went to her room to check on her, I found her badly flustered. Her body, the walls, the sides of her bed, and where she had walked were smeared with her feces. I tried to calm her down before taking her to the bathroom to clean her up. Only when I was done washing her and cleaning up everything else did I feed her dinner. Later that night, when all was quiet, I thought of the look of panic and agitation on Mom’s face. I couldn’t hold back and burst out crying. Mom had always been such a neatnik—what a state she must have been in when her body and surroundings were covered in her waste. I felt terrible. I couldn’t help but blame myself for not having been more alert when she had needed me the most. Mom is 96 this year. People tend to think that a long life is a blessing. But since she was diagnosed with Alzheimer’s more than 10 years ago, her husband, eldest son, and youngest son have passed away. She hasn’t grieved their passing; even worse, she has been completely unaware of their deaths. Her body, aged and wizened now, seems to be protesting silently about the unfairness of life, about why, after a lifetime of toil, she has to endure the ravages of illness. Writing and photographing as healing All the difficulties I have encountered over the years as a caregiver have helped me learn and grow. In the process of caring for my parents, I’ve learned how better to age in peace, how to communicate with other family members about providing better care for our loved ones, and how to make difficult decisions of life and death. What’s more, if I hadn’t become my parents’ caregiver, I wouldn’t have encountered Tzu Chi volunteers in a hospital, obtained their help and support, and come to know Tzu Chi better. The idea of giving up my volunteer work has never occurred to me, no matter how tired I am. Whenever my time allows and there is Tzu Chi work to do, I volunteer. A friend asked me, “Why do you still volunteer when you are already so tired?” I told her I appreciate every opportunity to serve because volunteering helps me adjust my mood. I often help document Tzu Chi events or write about our volunteers’ stories. I enjoy holding a camera in my hand, looking through the viewfinder, and working on how to take a picture that will speak to people. I’m not good at photography, but I have done my best to learn. When I focus on taking photos, I forget about all my pressure and worries. I laugh with everyone, and cry when moving things happen. It’s a most amazing feeling. The world is so beautiful in those moments, and I tell myself: “You’ll get better and better.” Every time I write about a volunteer’s story after interviewing him or her, I experience their life one more time; I share in their joys and sorrows. I’m not highly educated, but I put in a lot of effort learning how to make a story vivid and engaging while keeping to the truth. I thank the volunteers who offer up their stories to me; their stories have enriched my life and made me a better person. Serving as a volunteer writer has also helped me form many good affinities. The volunteers I’ve written about often send me their regards and express their care and concern for me. I deeply cherish such warm-heartedness. Having devoted a good part of my life to caring for my loved ones, I am now no longer the only person in my family providing for and caring for my mother. My financial burden is now shared by my family. The COVID-19 pandemic has resulted in a shortage of foreign home care workers in Taiwan. Without a helper to look after my mom while I work, I’ve temporarily entrusted her to the care of a nursing home. But I look forward to taking her home to live with me. Truth be told, the last 20 years was a difficult time for me. Even so, I cared for my parents willingly because I know how indebted I am to them for raising me. I took care of them not out of a sense of duty, but out of my love for them and a profound sense of gratitude. |
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