(C) El Paso Matters.org This story was originally published by El Paso Matters.org and is unaltered. . . . . . . . . . . El Paso family caregivers navigate reality of aging parents [1] ['Priscilla Totiyapungprasert', 'More Priscilla Totiyapungprasert', 'El Paso Matters', '.Wp-Block-Co-Authors-Plus-Coauthors.Is-Layout-Flow', 'Class', 'Wp-Block-Co-Authors-Plus', 'Display Inline', '.Wp-Block-Co-Authors-Plus-Avatar', 'Where Img', 'Height Auto Max-Width'] Date: 2024-06-16 This is the first in a two-part series on caring for aging loved ones. Look for Part 2, “Is El Paso prepared to care for its aging population?” at elpasomatters.org on Monday, and join us for a panel discussion on the topic June 26. Katherine Torres tried giving her 85-year-old mother a comfortable routine from their home in West El Paso. Her mother, Beverly Benton, used to be an early riser, but now gets out of bed after 9 a.m. Until last month, Torres would prepare Benton her usual breakfast of porridge, toast and a piece of fruit. During the day, Benton worked on her word searches and sat in the front yard to watch the neighbors in her cul-de-sac. She walked around the house holding a mug of coffee, which she would eventually leave somewhere, cold and unfinished, until Torres prepared her a new mug. Their elderly pug, Sugar Plum, suffers from a similar ailment to Benton – a bad hip, prone to falls – and followed Benton around on an unsteady gait. Torres knew that one day in her mother’s old age, she would bring Benton in to live with her. But she hadn’t factored the possibility of dementia into her plans. In mid-May, Torres moved her mother to a nearby foster home. Torres had delayed a medically necessary surgery for a year because it wouldn’t allow her to watch her mother all day. The move to an unfamiliar place devastated them both. “I still feel like I’m dumping my mother, even though that’s not what I’m doing,” Torres said. “I’m doing what’s best for her and doing the best to take care of my own immediate needs. Even considering all that, I feel guilty, like I’m shirking my responsibilities as her daughter.” Beverly Benton, 85, plays a hymn on her piano in the sitting area of her apartment within the home of her daughter, Katherine Torres, May 14, 2024. Benson spent decades as a pianist in her church. (Corrie Boudreaux/El Paso Matters) Across Texas, an estimated 3.4 million unpaid people care for older, ill and disabled family members, according to Texas Health and Human Services. Many of them may neglect their own well-being while trying to give their loved ones a quality life, said leaders from the Rio Grande Area Agency for Aging and the Alzheimer’s Association. The stress of caregiving varies by each family, sometimes straining relationships with siblings and spouses as they navigate the variables: Who has the financial means? Who lives the closest? Who can make the time? Often, a daughter shoulders the bulk of the responsibility in caring for an aging parent. An estimated 61% of family caregivers in the United States are women, according to Caregiving in the U.S., the latest report by the National Alliance for Caregiving and AARP. I still feel like I’m dumping my mother, even though that’s not what I’m doing. El Pasoan Katherine Torres The report predicts the number of family caregivers will continue to grow as one of the largest demographic groups, baby boomers, continues to age. By 2026, baby boomers will begin turning 80, the age when many people start to need help carrying out daily tasks. related Alzheimer’s caregivers in El Paso find hope in new ‘era of treatment’ El Paso has one of the most prevalent rates of Alzheimer’s in Texas, but health care providers say new drugs signal a turn in treatment. Critical health problems can force families to make quick decisions. For Torres, her mother’s dementia robbed them of the future they once imagined together. Margie Brickey, a recent retiree, for the first time saw her mother’s frailty after she was hospitalized with bronchitis. Camille Carlos, an elementary school teacher, became a caregiver in just her early 20s when diabetes, alcoholism and depression caught up with her father. “If my brothers and I weren’t doing this, nobody would be doing it, honestly,” Carlos said. “I’m not OK with imagining my dad on the streets.” Caregivers dip into savings for expenses Torres said she missed early warning signs that her mother was struggling – a frozen waffle lying on the counter, her mother’s constant requests for new underwear and groceries. But looking back, she sees these were signs her mother was losing the ability to take care of herself, from preparing meals to managing her money to using the bathroom. Beverly Benton contemplates old family photos of her own youth and her children’s childhoods, May 14, 2024. (Corrie Boudreaux/El Paso Matters) Benton receives a fixed income from Social Security and her pension from her husband’s Navy retirement. But she fell behind on her bills and went into debt with unpaid loans because family members living with Benton took advantage of her dementia to gain access to her money, Torres said. In 2021, Torres set out to put her mother’s financial situation back in order. She and her son used their own money to pay off Benton’s bills, loans and property taxes. She installed handrails in the house. Torres then sold her mother’s house and moved Benton into her home, where Benton got her own bedroom, sitting area with a piano, and study that was eventually converted into a bedroom for home attendants. Most of Benton’s income went to medical bills, such as hip surgery, because Benton only had basic Medicare at the time. Torres eventually quit her job as a surgical technician to take care of her mother while her husband, a retired U.S. railroad employee, worked a post-retirement job during the day. Torres knows she’s fortunate that her family had enough money to take care of these needs. Caregivers experience a range of financial impacts that can erode their savings. Uncompensated expenses for transportation, housing and health care can add up to more than $7,000 a year on average, according to a 2023 report by TIAA Institute and the University of Pennsylvania School of Nursing. The unpaid work of family caregivers in the United States is valued at $600 billion, according to an estimate by AARP. One avenue a family caregiver could explore to receive financial compensation is the Texas Health and Human Services’ Community Attendant Services program. The person cared for becomes an employer while the caregiver can apply to become their part-time or full-time employee, or attendant, and receive a wage from the state. Attendants are not allowed to be the spouse or legal guardian of the person who receives services. Yvette Lugo, director of the Rio Grande Area Agency on Aging The Community Attendant Services program serves both aging people and people with disabilities – but only if they qualify for Medicaid. The Medicaid qualification presents a barrier to many seeking a variety of state and federally funded programs, such as services from Bienvivir, said Yvette Lugo, director of the Rio Grande Area Agency on Aging. The agency tries to support people who fall through that gap by providing short-term services, such as purchasing equipment, paying for home modifications and coordinating home attendants to help with daily activities. Caseworkers at the agency also help people apply for government benefits, an arduous process that can exhaust people trying to figure it out on their own, Lugo said. Caregivers’ health can take a back seat Despite her father’s decline in autonomy, Carlos feels it’s important for him to be treated with dignity. Carlos described her father, Rick, as her best friend growing up. He took her to the movies, concerts and, once, Las Vegas with her cousins. Her cousins called him their “funcle,” their fun uncle. As kids, they piled up in Rick’s SUV to go camping in Taos, New Mexico, and Great Sand Dunes National Park in Colorado. When she thinks of her dad, she likes to think of the grillmaster, the jokester, the man always up for a good time, taking her to see blues musician Gary Clark Jr. perform at Tricky Falls in Downtown El Paso. But Rick, a former El Paso police officer, experienced turmoil that Carlos didn’t understand until she was older. Camille Carlos and her father, Rick Carlos, talk about their differing opinions on dogs as pets as they visit in the back yard of the adult foster home where Rick lives, June 11, 2014. (Corrie Boudreaux/El Paso Matters) Rick’s health deteriorated after 2016 when his father died. He had trouble coping. He relied heavily on alcohol, nicotine and cannabis for his depression, lost his job and blew his savings. In 2023 he moved in with Carlos when he could no longer afford rent and his blood sugar skyrocketed from bouts of binge eating. He became irritable, lashing out at his children when they tried to manage his failing health. “I think it’s important to understand when somebody is sick in that way with mental issues, especially with addiction, it’s not something you can see at first,” Carlos said. “It was a fast decline. That’s when the emotional labor of caregiving started.” Before her brothers got involved, the responsibility fell on Carlos to cook for her father, make sure he took his medications, and get taken care of if he had a fall or incontinence incident. It was a fast decline. That’s when the emotional labor of caregiving started. Camille Carlos, schoolteacher She found it difficult to take care of herself and her hair fell out from the stress. Her friendships and romantic relationship suffered. Carlos said she felt hopeless and wondered when she would have time to plan for her own future. Earlier this year Carlos found mental health support through a recommendation from her therapist, Al-Anon, a nonprofit that organizes meetups for families and loved ones of people affected by substance abuse. She and her brothers all work, so they eventually moved Rick to a foster home in West El Paso where he can have 24-hour supervision. He passes his time reading the news, listening to true crime podcasts and watching movies in his room. His children visit and are still involved in his life, taking him to dinner and doctor appointments. In his room, a photograph of his niece sits on his nightstand and a Dallas Cowboys pennant from his son hangs on the wall. “Some have given up on him,” Carlos said of her father. “They’ve abandoned him and it makes me upset, mad and sad at times. I only got one dad and at the end of the day, I love him. I’m going to keep taking care of him because I know it’s not forever. I don’t want to have regrets about not spending time with him.” Rick Carlos, a former police officer and a Cowboys and Dodgers fan, moved into an adult foster home when his care became too complex for his children, who are mostly in their 20s and have full-time jobs. (Corrie Boudreaux/El Paso Matters) Carlos said her father’s health wouldn’t have improved if it weren’t for foster care attendants to keep him on a routine, as well as her and her brothers accompanying him to doctor appointments. “Caregivers are our silent heroes,” said Dr. Ismael Rodriguez, a geriatric physician at University Medical Center of El Paso. Dr. Ismael Rodriguez, physician at UMC who specializes in geriatric medicine. (Courtesy of UMC) A lot of issues affect not only the patient but the whole family, so when you treat that patient, you are treating that family. Dr. Ismael Rodriguez, geriatric physician Rodriguez said he sees patients at his clinic who don’t have good social support. They might forget to administer their own insulin and have uncontrolled diabetes for years. All it takes is a little more support – a family member making sure they take their insulin at the same time every day – to see improvements in just weeks. Patients might feel embarrassed to share certain incidents, such as a fall or incontinence, so caregivers can provide more history than the patient themself, he said. Family members can also keep a log of information that patients might not be recording, such as their blood pressure and blood sugar. All this information is important for an accurate evaluation, he said. “A lot of issues affect not only the patient but the whole family, so when you treat that patient, you are treating that family,” Rodriguez said. Families have to work together in caregiving Brickey said caregiving can cause friction in a family when it feels like the responsibility falls on one person more than the other. She has five brothers and sisters, some of whom live in El Paso, who try to collectively take care of their 96-year-old mother, Ana Maria Loya. But it can be challenging sometimes when the siblings have different personalities and different opinions about what’s best for their mother, she said. Loya was diagnosed with lymphatic cancer at 91 years old. After successful treatment with chemotherapy, Loya was hospitalized once again for bronchitis at the beginning of the coronavirus pandemic. Loya came out of the hospital a changed person, Brickey said. She wanted her bedroom door left open, a nightlight on, someone with her at all times. Ana Maria Loya (front left) with her family. Her children became her caregivers after she was diagnosed with cancer in her 90s. Hiring a home attendant to spend the night with Loya became too expensive, so the siblings in El Paso took turns. When siblings visited from out of town, the El Paso siblings felt like it was someone else’s turn to step up, Brickey said. The siblings had to decide who did which tasks, such as who was picking up the medication from Walgreens and who was ordering the grocery delivery. “Even though we’re all very united and love each other and love our mom, it’s still hard,” Brickey said. Carlos said she and her brothers are close, but that didn’t stop them from getting into arguments. Her older brother uprooted his life in Houston to move back to El Paso, which she’s certain created some resentment. At the same time, Carlos said she felt own tinges of resentment when her younger brother traveled for work and wasn’t around for day-to-day care. She and her brothers couldn’t all hang out at the same time because one sibling had to stay back with their father. If Carlos took her father to the ER, she expected one of her brothers to bail on plans with their friends to accompany her, which also created conflict. “Especially because we’re so young, we want to be hanging out with our friends, going out of town whenever we want,” Carlos said. “For many years we didn’t have that luxury because someone always had to stay with dad.” Camille Carlos, an elementary school teacher, visits her father, Rick, at his adult foster home, June 11, 2024. Camille was in her early 20s when she and her siblings became Rick’s caregivers. (Corrie Boudreaux/El Paso Matters) The Rio Grande Area Agency for Aging addresses burnout by connecting people to different types of providers so family caregivers can get some relief, said Elizabeth Silva, a program specialist care coordinator at the agency. Outside providers give caregivers time to shop for themselves, go to the movies – all the things they can’t do because they’re too busy taking care of someone else. Family caregivers can’t provide long-term care if they neglect their own health and personal lives, she said. “We are the support system,” Silva said. “We are trying to get them help because they can’t do it on their own or it’s too much for them.” Struggle to find senior living home in El Paso This year, Brickey and her siblings moved their mother to a new foster home after a bad experience with a previous foster home. Before her cancer, Loya used to frequent the Memorial Park Senior Center for lunch, bingo and chair yoga. Her children now help her stay active by taking her out of the foster home for dinner, shopping and the senior center so Loya can meet old friends. “We are the support system. We are trying to get them help because they can’t do it on their own.” Elizabeth Silva, Rio Grande Area Agency on Aging Professional support can provide structure and free up time for children caring for their aging parents, but the search – and costs – can be another cause of stress. Brickey originally wanted to place Loya in an assisted living facility, which are large communities that tend to provide more amenities and support than an adult foster care home. But Brickey said the price tag is too high for them. Assisted living facilities can start at $3,500 to $4,500 per month. People can look up state-licensed assisted living facilities and adult foster care, on Texas Health and Human Services’ provider search. The Rio Grande Area Agency for Aging also has an ombudsman in El Paso who answers questions about nursing and assisted living homes, Silva said. The ombudsman also fields people’s complaints and concerns regarding the care at these homes, she added. Adult foster care, which tends to provide a home environment and smaller client-to-attendant ratio, can present a more affordable option. No more than three adults can live in a foster home unless licensed by the state. Margie Brickey and her siblings take care of their 96-year-old mother Ana Maria Loya in El Paso. (Courtesy of Margie Brickey) But adult foster homes vary in quality, Brickey said. The first foster home Loya stayed in, no one helped her bathe. In the second foster home, Brickey noticed the trash wasn’t emptied between her visits and Loya became incensed when she found a cockroach in her bed. Loya might be physically frail, but she’s still mentally sharp and can advocate for herself, Brickey said. They’re now searching for a third foster home. “Everyone’s just more interested in money than caring for an adult who’s lived and worked hard their whole life,” Brickey said. “This is my mom’s final years and it’s a dismay to have this situation happen.” Torres said she spent 10 months looking at foster care homes before finding one. Before that, Torres was her mother’s 24-hour caregiver, only taking breaks if her husband or neighborhood friends could watch Benton. “In the past, I didn’t want to burden anyone, I didn’t want people to dread my phone calls,” Torres said. “It took me a long time, but I finally learned how to ask people to help me.” It took me a long time, but I finally learned how to ask people to help me. Katherine Torres Torres eventually found a “dream” situation: A clean, foster home close to her house, with only five residents, Benton’s own private room, mechanical lifts and regularly scheduled activities, such as walks in the park. Katherine and Beverly Benton share time in their front yard, where Beverly often likes to sit in the shade and observe activity around their cul-de-sac, May 14, 2024. (Corrie Boudreaux/El Paso Matters) Still, she dreaded the day she moved Benton to the foster home and felt like she was abandoning her mother. Her mother, a former church pianist and painter who used to curl her and her sisters’ hair, who canned vegetables from her garden so there would always be food in the house. Who today, from somewhere beneath her dementia, could still communicate her fears and anxieties. Who Torres thinks still deserves to have a comfortable life. “I’m sad the dream I had of us living her last years together aren’t what they could have been,” Torres said. “But that’s the reality of it. Dementia is a cruel, cruel disease.” Beverly Benson sneaks bits of her lunch to Sugar Plum, her daughter’s pug, May 14, 2024. (Corrie Boudreaux/El Paso Matters) [END] --- [1] Url: https://elpasomatters.org/2024/06/16/el-paso-caregivers-aging-family-elder-care-home-support/ Published and (C) by El Paso Matters.org Content appears here under this condition or license: Creative Commons CC BY-ND 4.0 International. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/elpasomatters/