昂贵且疲惫：为何照顾者也需关爱自己

多妮塔·布朗的家温馨而富有亲和力。

Donita Brown's home is warm and inviting.

客厅的墙壁涂着焦橙色，家中各处精心摆放着家庭照片和传家宝。

The walls in the living room are painted burnt orange, and there are family photos and heirlooms placed tastefully around the space.

我想确保自己保留着她和我祖母的一些物品，可以这么说。

I wanna make sure that I have pieces of her and my grandmother, if you will.

有些家具是我祖母的。

Some of this furniture is my grandmother's.

所以这些是从她家里带来的，那边那幅画其实是我妈妈画的。

So these are from her home, and my mom actually did that painting there.

你可以看到她的名字琼。

You can see her name Joan.

那幅画放在茶几下方，画中是一双祈祷的手，被一束光线框住。

The painting, which is placed beneath an end table, is of a pair of praying hands framed by a beam of light.

多妮塔·布朗充满活力，灿烂的笑容立刻就能吸引你。

Donita Brown is full of energy with a bright smile that immediately draws you in.

我们见面时，她穿着这件带帽的黑色运动衫。

When we meet, she's wearing this black hooded sweatshirt.

上面写着'家庭护工付出最多，爱得最深'。

It says family caregivers do the most and love the best.

我刚和我父亲一起进来。

So I'm just getting in with my dad.

他刚做完物理治疗。

He had physical therapy.

所以通常我会先看看我妈妈，确保她没事，然后给他弄点吃的。

And so, typically, check on my mom, make sure she's okay, and then get him something to eat.

她已经吃过了。

She's eaten.

她的女性朋友刚走，之前是她在这里照看她。

Her girlfriend just left, so she was here to watch her.

这需要大家齐心协力，在我们...你知道...带我爸去治疗的时候。

It takes a village while we, you know, went to take my dad.

接下来就是给他弄点吃的。

So next is getting him something to eat.

她把手伸进冰箱，拿出一个装满法式吐司和香肠的容器，这是一位朋友准备的餐食。

She reaches into the refrigerator and she pulls out a container filled with French toast and sausage, a meal made by a friend.

你能从社区、朋友或家人那里得到很多帮助吗？

Are you able to get a lot of help from folks in your community or friends or family?

今天我阿姨去取了药，那些处方药，然后我妈妈的朋友今天过来陪她，我则带爸爸去做治疗。

So my aunt picked up the medication today, the prescriptions, and then my mother's friend, she came over today to sit with my mom while I took him to therapy.

但日常情况下，就只有我一个人。

But on a day to day, it's just me.

想想看，为老年人提供的护理服务每年花费很容易超过普通美国人的收入。

Consider this, caregiving services for seniors can easily cost more each year than the average American makes.

而无论是政府还是私营的医疗保险公司，可能都无法提供人们所需的保障。

And health insurers, both government and private, may not provide the coverage that people need.

这导致许多像多妮塔·布朗这样的人无偿承担起这份工作。

That leads many people like Donita Brown to step in and do the work for free.

这里是NPR，我是胡安娜·萨默斯。

From NPR, I'm Juana Summers.

本消息由《金融时报》提供。

This message comes from the Financial Times.

铅中毒是英国的一个隐性流行病。

Lead poisoning is a hidden epidemic in The UK.

在Untold播客中，听听那些受影响者的故事。

On the Untold podcast, hear from people who have been affected.

解决这一问题的国家战略在哪里？

Where is the national strategy to address this?

在您获取播客的任何平台收听《Untold：有毒遗产》。

Listen to untold toxic legacy wherever you get your podcasts.

Wildcard节目让大牌访谈变得如同朋友间的对话。

Wildcard is where big name interviews feel like conversations with a friend.

说真的，我都不敢相信自己有多幸运。

I mean, I can't believe how lucky I've been.

你没有用正确的方式道别，麦康纳。

You didn't say goodbye the right way, McConaughey.

她告诉我，我觉得你不是普林斯顿的料。

She told me, I don't think you're Princeton material.

要说我有什么特点，大概就是坦率吧。

I'm nothing if not open, I guess.

我是瑞秋·马丁。

I'm Rachel Martin.

观看或收听NPR应用、YouTube或其他播客平台上的《Wildcard》节目。

Watch or listen to Wildcard on the NPR app, YouTube, or wherever you get your podcasts.

StoryCorps播客正在庆祝我们年度传统活动'感恩节大倾听'十周年，年轻人借此机会采访他们生命中重要的长辈。

The StoryCorps podcast is celebrating the tenth anniversary of our annual tradition, the Great Thanksgiving Listen, where young people interview an important elder in their lives.

我正在和我的祖母交谈。

I'm speaking with my grandmother.

我爸爸。

My dad.

我的图图，在夏威夷语中意为奶奶。

My tutu, which means grandma in Hawaiian.

在本期NPR的StoryCorps播客中，听听芝加哥郊外一所高中学生的分享。

Hear from the students at one high school outside Chicago on this episode of the StoryCorps podcast from NPR.

这里是NPR的《考虑这个》节目。

It's consider this from NPR.

如今65岁以上的人群中，超过三分之二在衰老过程中可能需要某种长期护理，无论是居家护理、辅助生活还是养老院。

More than two thirds of today's 65 year olds will likely need some kind of long term care as they age, whether that's in home care, assisted living or a nursing home.

所有这些服务费用都可能非常高昂，因此许多人依赖无偿的家庭护理人员。

And all of those services can be very expensive, so many people rely on unpaid family caregivers.

根据AARP数据，2021年他们的工作相当于每年约6000亿美元的无偿劳动。

In 2021, their work accounted for about $600,000,000,000 in unpaid labor annually, according to AARP.

这意味着每年由像多妮塔·布朗这样的人无偿完成的价值超过5000亿美元的工作。

That is more than half $1,000,000,000,000 worth of work done by people like Donita Brown every year for free.

如果说多妮塔·布朗有一个典型的日子，那大概就是这样的。

To the extent that there is a typical day for Donita Brown, this is what it looks like.

在同一屋檐下照料两位年迈的父母，他们的房间被楼梯分隔开来。

Caring for two aging parents in the same home, their rooms separated by flights of stairs.

楼上，好的。

Upstairs, Okay.

那里有她的母亲琼，她在2018年患上了脑干中风。

There's her mother, Joan, who had a brain stem stroke in 2018.

楼下是多妮塔的父亲比尔，他去年搬来同住。

Downstairs, there's Donita's father, Bill, who moved in last year.

如今在多妮塔穿梭于楼层之间、应对父母需求的过程中，她成为了维系一切的纽带。

And now navigating between those floors and navigating the needs of her two parents, Donita is the glue that holds everything together.

在成为全职看护者之前，布朗曾在美国医疗保险和医疗补助服务中心工作，期间请假前往埃斯瓦蒂尼参加和平队服务。

Before she became a full time caregiver, Brown was on leave from her job at the Centers for Medicare and Medicaid Services, serving in the Peace Corps in Eswatini.

当得知母亲中风的消息后，她立即赶回了美国。

When she learned that her mother had a stroke, she rushed back to The US.

我以为我只是回来和她道别的。

I thought I was just coming home to say my goodbyes to her.

她的母亲虽然在那次中风后幸存下来，但预后情况颇具挑战性

Her mother survived that stroke, though with a challenging prognosis from a

从认知角度来看

cognitive standpoint.

她无法真正自主处理任何事情，所以我成为了她的代理人

She couldn't really process anything for ourselves, so I became her proxy.

唐尼塔·布朗的母亲最初在一家康复机构接受支架治疗，随后被转至养老院，但布朗最终对母亲的护理不满意，于是决定将她接回家中，全职亲自照料

Donita Brown's mother initially did stents at a rehab facility and she was transferred to a nursing home, but ultimately Brown was not satisfied with her mother's care, so she decided to bring her home and take on caring for her herself full time.

去年，布朗的父亲也从洛杉矶回到了巴尔的摩

And last year, Brown's father returned from LA to Baltimore too.

他在被诊断出癌症后无法独立自理

He was unable to care for himself independently after a cancer diagnosis.

她能够全职照顾两位家人的部分原因是，她早已缩减了生活开支并还清了个人债务

Part of how she's able to navigate life as a full time family caregiver for both of them is that she'd already downsized and cut her personal debt.

我差不多十年没有稳定收入了

I haven't had a steady income in almost ten years.

我近十年没有缴纳退休金，但我并不缺什么。

I haven't paid into retirement, but I don't want for anything.

你能详细说说你是如何安排财务，才能同时照顾双亲的吗？

Can you just walk us through how you make the finances of being able to care for both of your parents work?

这笔账是怎么算的？

How does the math make sense?

我母亲享有医疗保险。

My mother is on Medicare.

他们俩都享有医疗保险和补充保险。

They're both on Medicare and have supplemental insurances.

我母亲的养老金用于支付她的日常用品开销。

My mom's pension helps with her supplies, her monthly supplies.

作为退休联邦雇员，她拥有很棒的保险。

She has great insurance as a retired federal employee.

她因为资历老而享受一项超棒的保险计划，无需支付共付额或共同保险。

She's kind of grandfathered into an amazing plan where she doesn't have any co pays or co insurance.

她的处方药费由保险承担，这部分费用从她的养老金中扣除。

Her prescriptions are covered with that and that's taken out of her pension.

我父亲...我很幸运，因为我的父母在经济上都很负责任，可以这么说。

My dad like I'm blessed because both of my parents were fiscally responsible if you will.

所以我想说我处于一个独特的位置。

So I would say I'm in a unique position.

多妮塔·布朗在照顾父母方面既用心又讲究方法，同时也很注重自我关怀。

Donita Brown is intentional about methodical about how she plans care for her parents, but also about how she cares for herself.

在我们交谈时，她反复提到了'喘息'这个概念。

As we talk, she repeatedly brings up the idea of respite.

就是深呼吸，有时候只是躺在床上呼吸，还有我的灵修——我总是先定好基调再起床。

It's breathing, just sometimes just staying in bed and breathing and my devotional as I always set the tone before I get out of bed.

昨天我感觉有点不舒服，你知道的，人总会有那种时候。

Yesterday, I was feeling kind of yucky, you know, you get those moments.

于是我起床找了个'提升情绪'的瑜伽练习来做。

And so I got up and I found a yoga, boost your mood yoga workout that I did.

你明白我的意思吗？

You know what I mean?

所以我也尽量做这些事情，同时坚持每年的体检和治疗。

So I tried to do those things as well as I stay up on my annual checkups and physicals and therapy.

最近有所增加。

There's been an uptick.

你知道，大多数人认为自我护理就是美甲、做头发和按摩。

You know, most people think about self care as nails and hair and massages.

这些我也做，比如周五我要去做美甲。

I do those too, you know, going to get my nails done Friday.

还有去看皮肤科医生，就像我说的，我确保基础检查都完成，同时做那些让我感觉良好的事情。

And going to the dermatologist, like I make sure that The basics you know, like I say, my well checks are done as well as doing things that I know that make me feel good.

布朗还建立了一个由其他护理者组成的社区。

Brown also has built a community of fellow caregivers.

它叫做本蒂圈。

It's called the Benti Circle.

这个名字来源于斯瓦希里语中'女儿'一词。

The name comes from the word for daughter in Swahili.

该小组最初于2021年2月成立，当时只有九个人，此后每月聚会，成员人数不断增长。

The group first met in February 2021, just nine people and every month since they've kept meeting their numbers growing.

我创建Benty是因为那正是我所需却缺失的社群。

I started Benty because it was the community that I needed and did not have.

我们每月聚会，每季度组织郊游，通过节奏放松身心，在笑声中释放压力。

And we meet monthly, we have quarterly outings, respite with rhythms and letting go with laughter.

我们会安排喜剧表演和音乐活动，举办现场音乐郊游。

You know we build in comedy shows and music, live music outings.

我们努力确保活动产生实际影响——减轻压力水平，让你在社群中获得安全感，掌握更多护理技能与工具，因为照顾父母虽艰难却是一份馈赠。

We try to make sure that there is impact, that it's making a difference, that stress levels are reduced, that you feel safe in community, you have more skills and tools that you need for this gift of caregiving Because it's a gift like to be able to care for your parent, even though it's hard.

我知道Bente圈专门关注黑人女儿护理者群体。

I know that the Bente circle focuses specifically on black daughter caregivers.

为什么这个定位对你如此重要？

Why was that focus so important to you?

这很重要，因为这是关于黑人女儿的。

It was important because it's the Black daughter.

这就是我所了解的，甚至在我开始研究之前。

And this is just what I knew, not even when I started to do research.

我只是知道，女儿往往是维系家庭的核心。

This is just what I knew is like the daughter holds it together.

作为一名黑人女性，面对健康差异以及我们如何受到不成比例的影响，我认为拥有这样一个空间很重要，而且照顾父母是不同的。

And so as a Black woman with the health disparities and just how we are just disproportionately affected by so much, I felt like it was important for us to have that space and caring for a parent is different.

就像我说的，看着父母的脆弱，处理失去曾经熟悉的父母的悲痛，处理无法再像以前那样与母亲交谈的事实。

Like I say, looking at the fragility of your parent, processing the grief of losing the parent that you knew, processing that you won't be able to have the conversations with your mom that you did before.

对吧？

Right?

处理母亲不再认识你的现实。

Processing that your mom doesn't know you.

你明白我的意思吗？

You know what I mean?

这就是为什么我觉得我们需要这个社群，因为说实话，你知道，有时候我们遇到事情时并不容易。

So that's why I felt like we need this community to because to be honest, you know, sometimes when we have things, it's not easy.

对吧？

Right?

你想要分享真实的感受并保持透明。

And you want to share how you really feel and be transparent.

我们是一个安全的空间。

We're a safe space.

我们了解，我有时会说，姑娘，要是我妈对我不好，她可能早就不在了，因为她真的让我抓狂。

We know I say it like girl, like what my mother sometimes I say girl, if you did not treat me good, you would be dead by now because she drives me crazy.

所以我们可以分享这些故事并笑对它们，因为这就是现实。

And so we're able to share those stories and laugh about them because it's real.

这真的...真的...

It's it's it's really.

而更令人感到挑战的是，那些照顾未曾养育过自己的父母的女儿们。

And and you know what's even more challenging are those daughters that are caring for parents that did not parent them.

所以拥有一个能理解你、不带偏见地与你共情的女儿们组成的社群，这很重要。

So having a community of daughters that understand and can empathize with you with no judgment, that's important.

对吧？

Right?

她带着我们

She walks us

走上这条通往她母亲卧室的狭窄楼梯，她和比尔正在那里消磨时间。

up this narrow staircase that leads to her mother's bedroom, and she and Bill are hanging out there.

电视上正播放着一档名为《百分之一俱乐部》的游戏节目。

And a game show, the one percent club, is playing on the TV.

你们玩了什么？

What did you play?

是啊。

Yeah.

她告诉我们，作为照顾者和女儿，她的另一个目标是继续创造回忆，趁父母还在世时多与他们共度欢乐时光。

She tells us that another goal for her as a caregiver and a daughter is to continue creating memories to try to celebrate her parents now while they're still here.

卧室门上挂着她母亲70岁赌场主题生日派对的服装。

Hanging on the bedroom door is the outfit for her mother's casino themed 70 birthday party.

她母亲正斜倚在床上休息，父亲则坐在床尾附近的扶手椅上，身上盖着一条巴尔的摩乌鸦队的羊毛毯。

Her mother's reclining, resting in bed, and her father sits in an armchair near the foot of the bed with a fleece Baltimore Ravens blanket draped over the top.

下午好。

Good afternoon.

你今天感觉怎么样？

How are you doing today?

挺好的。

Doing fine.

女士们，你们呢？

And how are you ladies doing?

我们很好。

We're well.

谢谢。

Thank you.

妈。

Ma.

妈。

Ma.

妈。

Ma.

哦，没事的。

Oh, it's okay.

醒了吗？

Wake up?

嗯。

Yeah.

你不想醒来吗？

You don't wanna wake up?

我们聊了一会儿，然后下楼穿好鞋子准备出门。

We chat for a little bit and then head back down the stairs, slipping on our shoes before we head out.

就在我们行动时，唐尼塔·布朗已经在展望未来。

And as we do, Donita Brown is already looking ahead.

她手里拿着一个橙色药瓶。

She's holding an orange pill bottle in her hand.

现在是时候分装药盒了，以确保她的父母都能得到所需的照顾。

It's time now to fill the pill boxes to make sure that both of her parents have the care that they need.

本期节目由亚历杭德拉·马克斯·汉斯制作，音频工程由大卫·格林伯格和瓦伦蒂娜·罗德里格斯·桑切斯负责。

This episode was produced by Alejandra Marquez Hanse with audio engineering by David Greenberg and Valentina Rodriguez Sanchez.

由莎拉·汉德尔编辑。

It was edited by Sarah Handel.

我们的执行制作人是萨米·耶尼根。

Our executive producer is Sammy Yenigan.

这里是NPR的《Consider This》节目。

It's Consider This from NPR.

我是胡安娜·萨默斯。

I'm Juana Summers.

我是杰西·索恩。

I'm Jesse Thorne.

亚当·斯科特在加利福尼亚州的圣克鲁斯长大，那里是美国最大的冲浪城市之一。

Adam Scott grew up in Santa Cruz, California, one of the biggest surf cities in the country.

但当亚当·斯科特来到海滩时，他另有打算。

But when Adam Scott hits the beach, he's got other plans.

浅滩冲浪，就像是给害怕海洋的人准备的冲浪运动。

Skimboarding, it's like surfing for people that are afraid of the ocean.

这是一期非常特别的现场直播节目，嘉宾包括亚当·斯科特、布茨·莱利等。

It's a very special live bullseye with Adam Scott, Boots Riley, and more.

您可以在NPR应用程序、maximumfun.org或任何您获取播客的平台找到我们。

Find us in the NPR app at maximumfun.org or wherever you get your podcasts.

拉丁音乐从未如此盛大，但在所有拉丁裔心中它一直都很重要。

Latin music has never been bigger, but it's always been big on all Latino.

十五年来，我们持续通过音乐视角庆祝拉丁文化，跨越国界传递声音。

Fifteen years in, we continue celebrating Latinidad through a music lens, transcending borders through.

深入了解拉美文化艺术家，为你的播放列表增添一些新的拉丁音乐推荐。

Get to know artists from La Cultura on a deeper level, and throw some new Latin music recs into your rotation.

在NPR应用或你获取播客的任何平台收听《Alt Latino》。

Listen to Alt Latino in the NPR app or wherever you get your podcasts.

想听无广告插播的播客吗？

Wanna hear this podcast without sponsor breaks?

亚马逊Prime会员可通过Amazon Music无广告收听《Consider This》，你也可以支持NPR的重要新闻报道，并在plus.npr.org获取《Consider This+》。

Amazon Prime members can listen to consider this sponsor free through Amazon Music, or you can also support NPR's vital journalism and get consider this plus at +.npr.org.

网址是plus.npr.org。

That's +.npr.org.