The falls, the bruises, the 3 a.m. calls: Why family caregivers are left to figure it out alone

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For years, Alice Thomas was the sole caregiver for her father as his dementia and mobility declined.

She enrolled in California’s In-Home Supportive Services program in 2024, hoping it would connect her to real instruction about how to care for her father. The caseworker who signed her up told her what the job was and what it paid. But Thomas said there was no walk-through of how to do it.

That gap showed up in the smallest, most physical moments. One afternoon, while bathing her father, Thomas found bruising on his body. She didn’t know what to do. She was afraid that water or the wrong touch or anything she tried might injure him. She had no way to read his face or his sounds and know whether she was helping or hurting him.

And then there were the falls. “There were times where my father would fall, and I was unable to pick him up,” Thomas said.

She called 911 at 3 a.m. because she was alone and he was on the floor.

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Tammy Gustin’s experience is similar. She has been a primary caregiver six times over — for her grandfather, her in-laws, her aunt, her grandmother and her mother — across cancer, Parkinson’s disease and pneumonia. Caring for her aunt, who had uterine cancer and dementia and was on dialysis, Gustin spent hours searching government websites for guidance. What little information she found was generic and not helpful for her experience.

Gustin second-guessed her ability to do the job safely because no one had ever demonstrated the physical aspects of it to her. No one prepared her for wound care, or even basics such as how to turn over a person who’s on dialysis.

“It puts a person through every stage of anxiety,” she said, “because you don’t want to hurt the person you are caring for.”

What Thomas and Gustin experienced isn’t unusual. Many of the nation’s 63 million family caregivers feel like they are left to sink or swim in taking care of ailing and often frail loved ones.

Medicare stepped in to address that in 2024 with a new training benefit for family caregivers. There also are state programs that train family members in how to give medication, prevent bedsores and infections, tend to wounds, move a person safely, communicate effectively with them and manage their specific medical conditions. Many caregivers are not aware of these benefits, experts say, because they aren’t widely promoted and sometimes require healthcare providers to initiate them.

“We build a healthcare system that truly depends on family caregivers to do all of these tasks, but what has not happened is that with that expectation, there’s no system that actually supports them,” said Rita Choula, senior director of caregiving at the AARP Public Policy Institute.

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As care has increasingly moved from the hospital to the home, family members are being asked to do what medical professionals used to do, without training and often without pay. AARP research shows that 40% of caregivers are providing high-intensity care including managing medical equipment, giving injections and preparing special diets. But only about 1 in 5 receives any training.

Choula and her team found that many providers were unaware or unfamiliar with the new Medicare reimbursement codes used to access the benefit. In the first year and a half the training was offered, Medicare paid claims that benefited about 9,600 recipients, an AARP study found.

The Centers for Medicare & Medicaid Services told CNN via email that it has “taken steps to make people with Medicare and their caregivers aware of caregiver training services, including coverage and cost information in the ‘Medicare & You’ handbook’” as well as other outreach materials. The agency declined an interview but said that it is monitoring implementation and feedback of its caregiver training services and continuing to “explore new ways to raise awareness.”

The State Health Insurance Assistance Program , a federally funded network of Medicare counselors in every state, did not respond to multiple requests for comment.

Minnesota is the only state with a formal, certified, state-funded profession built entirely around this kind of coaching, according to Maureen Schneider, chair of the Minnesota Board on Aging . The model runs through 42 agencies statewide and 105 certified consultants, serving roughly 17,300 caregivers a year. The program is free to families, using funding from the federal Older Americans Act .

“It’s a collaborative partnership between the person’s caregiver and a professional focusing on the needs and goals and challenges of the person who is doing the caregiving,” Schneider said.

Consultants bring training in dementia, grief, financial navigation and adult protective services, and stay with a family for months or years, not a single visit.

Those services helped Ron Patrick, who spent years caring for his wife, Vangie, as her health declined, her knees failed, her falls increased and dementia set in. His experience changed when Minnesota caregiver consultant Jayne Mund arrived with a team to teach Ron how to care for Vangie without hurting her or himself. They demonstrated how to lift her safely when she fell, and how to get her to the bathroom in the middle of the night. They covered what she should be eating as her condition changed, and how to support her while she walked, so a stumble didn’t become a fall. It was specific, hands-on, repeated instruction.

As Vangie’s condition worsened, however, the job grew tougher, and the strain showed on Ron, who was in his 80s.

“We were essentially trying to take care of both of them at the same time,” said his daughter-in-law, Karla Patrick, a registered nurse.

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Mund and her team returned to guide Vangie through the transition to a skilled nursing facility, and help Ron reconcile promises he made to his wife with the fact that he could not be her primary caregiver. Doing so enabled Ron to make the decision on Vangie’s placement with confidence instead of guilt.

“The hardest part for me to do was our wedding vows, for better, for worse, in sickness and in health,” Ron said. “But with the help of my family and Jayne and the preacher, they convinced me that I was still taking care of her. It was just a different way.”

The Patrick family only knew about Minnesota’s program because Karla Patrick went searching for help through the state. Schneider said that research, and word of mouth, is how most people find out about the program, which doesn’t budget much for outreach.

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Wisconsin has tried to build something similar, county by county. In Kenosha County, caregiver support coordinator Margaret Ricchio and her colleagues work the way Mund’s team does in Minnesota: in person, in living rooms. Ricchio builds a plan around what families need, including hands-on instruction in caregiving basics.

Trualta, a free platform in Wisconsin that relaunched in 2025 after federal money ran out a year earlier, offers articles, webinars and virtual support groups to family caregivers. It also offers hands-on resources that are delivered through Aging and Disability Resource Centers, such as the one Ricchio works for in Kenosha County.

“By the time a caregiver comes to me, they are at the point of being completely overwhelmed,” Ricchio said. “It’s considered a crisis situation.”

As in Minnesota, Wisconsin does little to promote the programs, which vary by county. While Ricchio gets some referrals through Trualta, she also tries to spread the word herself. She found one of her clients through a casual conversation with a grocery store cashier, who told her about a family in dire need of caregiver resources. The Wisconsin Department of Health Services said it’s trying to reach working-age caregivers through employers and human resources departments but has little dedicated money to do it.

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At one time, California was ahead of the game, becoming one of the first states to launch a Master Plan for Aging in 2021, which stressed support for caregivers.

A grant program called CalGrows put $89 million in federal American Rescue Plan Act money toward building a bigger caregiver workforce in 2023. It funded 850 trainings in 10 languages for career and family caregivers before it ended in October 2024.

“More than 7 million Californians care for loved ones, and many take on that role without formal training or support,” said Claire Ramsey, acting director for the California Department of Aging. “Supporting family caregivers is central to California’s Master Plan for Aging and to CDA’s mission of helping people age with dignity and independence. CalGrows demonstrated the value of accessible caregiving education, and we are continuing to build on that work by connecting caregivers to training, services, and resources that strengthen families and communities across the state.”

Eileen Norman runs the San Francisco IHSS Public Authority, referring Medi-Cal (California’s Medicaid program, access in-home care) recipients to the nonprofit Family Caregiver Alliance , which offers free training and a mentorship program to help people navigate in-home support services. Norman said she’s never heard of the Medicare caregiver-training benefit that, on paper, should be available to many of the families with whom she works.

“There is lots of community support,” Norman said. “We just have to remember that we have to look for it.”

The problem, she said, is that caregivers in crisis don’t know where to look. By the time they find out what exists, they’ve often already been through the hardest part alone — the falls, the bruises, the 3 a.m. calls that a trained person could have walked them through in advance.

“A lot of times when people finally find us,” she said, “they’re like, ‘I wish I knew about you sooner.’”

Ron Patrick is emblematic of the many caregivers who struggle in silence because they don’t know where to turn. Now 85, he lives in a senior community north of Minneapolis, where residents own their units and look out for each other. On Monday mornings, he volunteers at a hospital, sitting at the front desk, helping visitors find where they need to go. He texts his son and daughter-in-law every morning and wears a medical alert pendant, just in case.

“They keep a good eye on me,” he said of his family. “They’re fantastic help.”

Raginee Sudhir Chaurey is a writer with the Investigative Reporting Program at the University of California, Berkeley Graduate School of Journalism and covered this story through a grant from The SCAN Foundation .

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多年来，随着父亲的痴呆症和行动能力的下降，爱丽丝·托马斯一直是父亲唯一的照护者。

她于2024年报名参加了加州的居家支持服务项目，希望能够获得关于如何照顾父亲的真正指导。为她报名的社工告诉她这份工作的内容和报酬。但托马斯说，并没有人指导她如何操作。

这种隔阂甚至体现在最细微、最直接的肢体接触中。一天下午，托马斯在给父亲洗澡时，发现他身上有淤青。她不知所措。她害怕水、不小心触碰，或者任何她尝试的动作都会伤害到他。她无法通过观察父亲的表情或声音来判断自己究竟是在帮他还是在害他。

还有摔倒的那些事。“有时候我父亲摔倒了，我却扶不起来他，”托马斯说。

凌晨3点，她独自一人，而他倒在地上，于是她拨打了911报警。

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如何成为一名合格的照护者并获得所需的支持

塔米·古斯汀的经历与之类似。她曾六次担任主要照护者——照顾她的祖父、公婆、姑姑、祖母和母亲——他们分别患有癌症、帕金森病和肺炎。在照顾患有子宫癌和痴呆症并接受透析治疗的姑姑时，古斯汀花了几个小时在政府网站上寻找指导。但她找到的信息寥寥无几，而且都非常笼统，对她的实际情况毫无帮助。

古斯汀对自己能否安全胜任这份工作感到怀疑，因为从来没有人向她演示过其中的实际操作。没有人教她如何进行伤口护理，甚至连如何给透析病人翻身这样的基本操作都没有。

“这会让一个人经历焦虑的各个阶段，”她说，“因为你不想伤害你照顾的人。”

托马斯和古斯汀的遭遇并非个例。全国6300万家庭照护者中，许多人都感觉自己在照顾患病且往往体弱多病的亲人时，只能听天由命。

为了解决这个问题，联邦医疗保险（Medicare）于2024年推出了一项针对家庭照护者的新培训福利。此外，各州也设有相关项目，培训家庭成员如何给药、预防褥疮和感染、处理伤口、安全移动病人、与病人有效沟通以及管理病人的特定疾病。专家表示，许多照护者并不了解这些福利，因为这些福利宣传力度不够，有时还需要医疗服务提供者主动发起。

“我们建立了一个真正依赖家庭护理人员来完成所有这些任务的医疗保健系统，但实际情况是，在这种期望下，并没有一个系统真正支持他们，”美国退休人员协会公共政策研究所护理高级主管丽塔·乔拉说。

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照顾者福祉方面的性别差距是真实存在的。如何解决这个问题？

随着护理工作越来越多地从医院转移到家庭，家庭成员被要求承担过去由专业医护人员完成的工作，但他们往往缺乏相关培训，而且常常没有报酬。美国退休人员协会（AARP）的研究表明，40%的照护者需要提供高强度的护理，包括管理医疗设备、注射药物和准备特殊饮食。然而，只有大约五分之一的照护者接受过相关培训。

Choula和她的团队发现，许多医疗服务提供者并不了解或不熟悉用于获取医疗保险福利的新报销代码。美国退休人员协会（AARP）的一项研究发现，在培训开展的头一年半时间里，医疗保险支付了约9600名受益人的报销款项。

美国医疗保险和医疗补助服务中心通过电子邮件告诉CNN，该机构已“采取措施，让参加医疗保险的人及其照护者了解照护者培训服务，包括在《医疗保险与您》手册中提供覆盖范围和费用信息”，以及其他宣传材料。该机构拒绝接受采访，但表示正在监测照护者培训服务的实施情况和反馈意见，并继续“探索提高公众意识的新方法”。

州健康保险援助计划（State Health Insurance Assistance Program）是由联邦政府资助的，在每个州都设有医疗保险咨询员网络，但该计划未回应多次置评请求。

据明尼苏达州老龄委员会主席莫琳·施耐德 (Maureen Schneider) 介绍，明尼苏达州是唯一一个拥有正式认证、州政府资助的、完全围绕此类辅导而建立的专业机构的州。该模式通过全州 42 个机构和 105 名认证顾问运作，每年为约 17,300 名照护者提供服务。该项目面向家庭免费开放，资金来自联邦《老年美国人法案》。

施耐德说：“这是照顾者与专业人士之间的一种合作关系，重点关注照顾者的需求、目标和挑战。”

顾问们接受过痴呆症、悲伤、财务指导和成人保护服务方面的培训，并且会陪伴一个家庭数月甚至数年，而不是仅仅一次上门拜访。

这些服务帮助了罗恩·帕特里克。多年来，他一直照顾着妻子范吉，但随着范吉健康状况的恶化，她的膝盖逐渐无力，跌倒的次数也越来越多，最终患上了老年痴呆症。明尼苏达州的护理顾问杰恩·蒙德带着团队来到罗恩家，教他如何照顾范吉，避免自己和妻子受伤。他们的到来改变了罗恩的处境。他们演示了范吉跌倒后如何安全地扶起她，以及如何在半夜扶她去洗手间。他们讲解了随着范吉病情变化，她应该吃什么，以及如何在她走路时扶她，防止她绊倒后摔倒。这些指导具体、实用、反复。

然而，随着 Vangie 的病情恶化，这项工作变得越来越艰难，这给 80 多岁的 Ron 带来了压力。

“我们基本上是想同时照顾他们两个，”他的儿媳卡拉·帕特里克（Karla Patrick）说道，她是一名注册护士。

听听这些女性讲述她们大部分时间都在从事的隐形工作。

蒙德和她的团队再次来到范吉身边，指导她顺利过渡到专业护理机构，并帮助罗恩调和他对妻子做出的承诺与他无法成为她主要照护者的现实之间的矛盾。这样做使罗恩能够充满信心地做出范吉的安置决定，而不是感到内疚。

“对我来说，最难的是我们的结婚誓词，无论顺境逆境，无论健康疾病，我都愿与她相伴，”罗恩说。“但在我的家人、简和牧师的帮助下，他们让我相信，我仍然在照顾她。只是方式不同而已。”

帕特里克一家之所以知道明尼苏达州的这个项目，是因为卡拉·帕特里克主动向州政府寻求帮助。施耐德表示，大多数人都是通过调查和口口相传了解到这个项目的，因为该项目在宣传推广方面的预算并不多。

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威斯康星州也尝试在各个县建立类似的模式。在基诺沙县，照护者支持协调员玛格丽特·里奇奥和她的同事们的工作方式与明尼苏达州蒙德的团队类似：亲自上门，到居民家中提供帮助。里奇奥会根据家庭的需求制定计划，包括提供照护基础知识的实践指导。

Trualta是威斯康星州的一个免费平台，在联邦资金于一年前耗尽后，于2025年重新启动。该平台为家庭照护者提供文章、网络研讨会和虚拟支持小组。它还提供实用资源，这些资源通过老年和残疾资源中心发放，例如Ricchio在基诺沙县工作的那个中心。

“当护理人员来找我时，他们已经完全不堪重负了，”里基奥说。“这被视为危机情况。”

与明尼苏达州一样，威斯康星州对这些项目的推广力度不足，而且各县的项目也不尽相同。虽然里基奥通过Trualta获得了一些转介，但她也努力自己宣传。她的一位客户就是在与一位杂货店收银员的闲聊中认识的，收银员告诉她有一个家庭急需照护资源。威斯康星州卫生服务部表示，他们正试图通过雇主和人力资源部门联系到在职照护者，但缺乏专项资金。

诗歌为患有痴呆症的部落长者提供了一个表达自我的空间。

加州一度走在了前列，成为首批在 2021 年推出老龄化总体规划的州之一，该规划强调对护理人员的支持。

一项名为 CalGrows 的拨款计划在 2023 年投入了 8900 万美元的联邦《美国救援计划法案》资金，用于建立一支更大的护理人员队伍。该计划在 2024 年 10 月结束前，资助了 850 项针对职业和家庭护理人员的 10 种语言的培训。

加州老龄事务部代理主任克莱尔·拉姆齐表示：“超过700万加州居民承担着照顾亲人的责任，其中许多人在缺乏正规培训或支持的情况下就承担起了这一角色。支持家庭照护者是加州老龄化总体规划的核心，也是加州老龄事务部帮助人们有尊严、独立地老去这一使命的关键所在。CalGrows项目展现了普及照护教育的价值，我们将继续在此基础上，通过为照护者提供培训、服务和资源，增强全州家庭和社区的力量。”

艾琳·诺曼负责旧金山居家支持服务公共管理局的工作，她将加州医疗补助计划（Medi-Cal，加州的医疗补助计划，提供居家护理服务）的受益人转介给非营利组织“家庭照护者联盟”（Family Caregiver Alliance）。该联盟提供免费培训和指导项目，帮助人们了解和使用居家支持服务。诺曼表示，她从未听说过联邦医疗保险（Medicare）提供的照护者培训福利，而从理论上讲，她服务的许多家庭都应该享有这项福利。

诺曼说：“社区有很多支持。我们只需要记住，要主动去寻找这种支持。”

她说，问题在于，身处困境的照护者不知道该从哪里寻求帮助。等到他们找到相关资源时，往往已经独自度过了最艰难的阶段——跌倒、擦伤、凌晨三点的求助电话，而这些原本可以由受过培训的人员提前指导他们应对。

“很多时候，当人们最终找到我们时，”她说，“他们会说，‘我真希望早点认识你们。’”

罗恩·帕特里克是众多默默承受痛苦、不知所措的照护者的缩影。现年85岁的他住在明尼阿波利斯北部的一个老年社区，那里的居民拥有自己的公寓，彼此守望相助。每周一早上，他都会去医院做义工，坐在前台，帮助访客找到他们需要去的地方。他每天早上都会给儿子和儿媳发短信，并且佩戴着医疗警报吊坠，以防万一。

“他们对我很照顾，”他谈到家人时说。“他们帮了我很大的忙。”

Raginee Sudhir Chaurey 是加州大学伯克利分校新闻研究生院调查报道项目的撰稿人，她通过 SCAN 基金会的资助报道了这则新闻。

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