给看护者的4条建议

https://www.npr.org/2023/02/16/1157494002/how-caregivers-can-prevent-burnout

Keisha "TK" Dutes, 

Sylvie Douglis

“养大一个孩子需要一个村庄（的努力）。”这是一句非洲谚语，意思是社区需要为孩子的成长提供健康安全的环境。 

但是当你长大后会发生什么？村庄消失了吗？作为成年人，我们没有意识到在无数情况下，我们需要家人和社区的支持。

据全国看护联盟和 AARP 的《2020 年美国看护报告》 估计，有 5300 万美国人正在充当家人的无偿看护者。这意味着你认识的人中有五分之一的人，为了确保亲人的健康和安全而改变了自己的生活。这通常是以牺牲他们自己的身心健康为代价的。

作为曾经是（收费）护理人员的我，感觉与momofmymom.com  的Jacqueline Revere 进行交谈很重要 ，该网站记录了里维尔（Revere）和她母亲之间的照料之旅。我还与多学科艺术家Trezure Empire 进行了交谈，她已经照顾了她母亲 20 年。我们可以了解他们如何在情感上、精神上管理照料亲人，以及他们最需要从他们的村庄（社交圈）和他们自己那里得到什么。

以下是护理人员（过来人）给护理人员的四条建议。

1. 对自己温柔一点。

你的生活正在改变，你只知道你所知道的。照顾亲人没有“蓝图”（样本），所以要温柔对待自己。 

“原谅自己，因为当你开始时，你会犯错误。你会变得脾气暴躁，”里维尔说。 “随着时间的推移，你会增强韧性。你坐在一个角落里，完全崩溃；这会发生在某一年，但在第四年，你会说，哦，又是一个星期二。”

同样重要的是要记住花时间“哀悼”这一切如何改变你的个人生活。这可能看起来像是接受治疗或做反思，以便让你以最好的自己适应这种（看护）情况。 

“护理者很容易屈服于照顾病人带来的挫败感，”Empire 说。 “但这是我必须做的，才能成为最好的人——真正检查自己，不是为了她，而是为了我自己。”

2. 组建你的团队。

要处理所有这些感受和任务，你需要建立一个护理团队——为你自己以及你所护理的人。弄清楚你生活中的人可以如何帮助，给你寄钱或提供物资，或者花时间陪你。Revere 说委派任务（给别人）尤为重要。

Revere 说：“无论是付费让人来收拾房子、送餐，还是安排一些时间（让你喘口气）并出门走走。” “我的一个朋友会做的事情就是她会停下来......说，'嘿，我们一起出门走走吧。'如此简单的事情，它会帮助我理清思绪。”

3. 了解你的权利并探索你的资源。

在这一切之中，许多看护人仍然不得不从事朝九晚五的工作。与你的雇主沟通、设定期望并可能找到其他工作方式是关键。了解你作为看护人的权利也很重要。

“请记住，这是无偿工作，看护人没有太多权利，”Empire 说。“就像，你不能因为某人是残疾人而否认他（的利益），但你可以完全否认我作为看护人的角色。”

查看你工作单位的政策和州法律，看看你是否有资格根据《员工看护时间合格休假法》(ELECT) 使用带薪休假或病假来照顾亲人。如果不是，请查看根据《联邦家庭和医疗休假法》是否可以选择无薪休假。 

当你在看护亲人时，“村里”也可以通过“学习宣传，学习正在发生的为家庭看护者支付报酬的运动，[和]获得更多社会支持的运动，”Revere 说。

4. 照顾好自己同样重要。

你还需要为自己抽出时间并创建一个生活系统。 Empire 非常清楚“你不应该首先照顾别人”。

“你的一天必须首先为你开始，”Empire说，“你与生活的关系必须首先开始，你必须构建一个允许它的系统。如果它不能成为首位，那么它必须是最后的一件事；必须有属于你的时间。”

每个人都不一样，但为自己找时间并开始新的一天，进行冥想、伸展运动、祈祷、或写日记等，可以让你的生活变得平衡。 

最后，请记住，你已经被“卷入”护理亲人以确保你所爱之人的健康——而这种健康的一部分是你和你所爱的人给彼此带来的快乐。 

正如 Revere 所说，“我认为最重要的是创造时刻，让你拥有的时间变得有价值。”

4 pieces of advice for caregivers, from caregivers

https://www.npr.org/2023/02/16/1157494002/how-caregivers-can-prevent-burnout

By 

Keisha "TK" Dutes, 

Sylvie Douglis

"It takes a village to raise a child." That's an African proverb meaning it takes a community to provide a healthy and safe environment for a child to grow. 

But what happens when you grow up? Does the village disappear? As adults we don't realize there are a myriad of situations where we need our families and communities to have our backs.

An estimated 53 million Americans are acting as unpaid caregivers to loved ones, according to the National Alliance for Caregiving and AARP's Caregiving in the U.S. 2020 report. That means 1 in 5 people you know have had their lives upended to ensure the health and safety of loved ones. This often comes at the expense of their own mental, physical and emotional health.

As a former (paid) caregiver myself, I thought it was important to talk to Jacqueline Revere of momofmymom.com, a website that chronicles the caregiving journey between Revere and her mother. I also spoke with multidisciplinary artist Trezure Empire, who has been a caregiver to her mother for two decades. We get into how they manage caregiving emotionally, mentally, and what they need the most from their village and from themselves.

Here are four pieces of advice for caregivers, from caregivers.

1. Be gentle with yourself.

Your life is changing, and you only know what you know. There is no blueprint for caregiving, so be gentle with yourself. 

"Forgive yourself because when you're starting out, you will make mistakes. You will get short-tempered," Revere says. "You will build up resilience over time. And so you sitting in a corner completely having a meltdown will happen one year, but in Year four, you'll be like, oh, just another Tuesday."

It's also important to remember to take time to mourn how this changes your life personally. This might look like getting therapy or doing internal work in order to bring your best self to the situation. 

"It's very easy to give in to the frustration of caregiving," Empire says. "But it's what I have to do to be the best person I could be — to really check myself, not for her but for me."

2. Assemble your team.

To process all these feelings and tasks, you need to establish a care team — for yourself as well as for the person you are caring for. Figure out how people in your life can help with things like sending money or supplies, or taking time to sit with you. Revere says delegating tasks is especially important.

"Whether it's ordering someone to come and tidy up a house, having a meal sent, [or] scheduling some time to just show up and just walk," Revere says. "Something that one of my friends would do is she would just stop by and ... say, 'Hey, let's walk.' And something so simple would just help me to clear my mind."

3. Know your rights and explore your resources.

In the midst of all of this, many caregivers still have to work a 9-to-5 job. Communicating with your employer, setting expectations and possibly finding alternative ways to work are key. It's also important to learn about your rights as a caregiver.

"Just remember that this is unpaid work, and there aren't a lot of rights for caregivers," Empire says." Like, you can't deny someone for being disabled, but you can totally deny me for my role as a caregiver to someone that's disabled."

Look into your workplace's policies and state laws to see if you qualify under the Eligible Leave for Employee Caregiving Time Act (ELECT) to use paid vacation time or sick days to care for loved ones. If not, see if unpaid leave is an option under the Federal Family and Medical Leave Act. 

While you're caregiving, the village can also help by "learning about advocacy, learning movements that are happening to get family caregivers paid, [and] the movements to have more social support," says Revere.

4. Caring for yourself is just as vital.

You also need to take time for yourself and create a system for living. Empire is very clear that "you should not be trying to take care of anybody before yourself."

"Your day's got to start for you first," Empire says."Your relationship with your life has to begin first, and you have to construct a system that allows that. And if it can't be first, then it has to be last, but there has to be time that is yours."

Everyone is different but finding time for yourself and starting your day with a practice like meditation, stretching, prayer or journaling makes a difference in a balanced life. 

Finally, remember you have been brought into caregiving to ensure the wellness of someone you love — and part of wellness is the joy that you and your loved one bring to each other. 

Like Revere says, "I think what's most important is making moments, making value of the time that you have."

The audio portion of this episode was produced by Sylvie Douglas and edited by Meghan Keane. Marielle Segarra is our host. The digital story was edited by Danielle Nett. Our visuals editor is Beck Harlan. We'd love to hear from you. Leave us a voicemail at 202-216-9823, or email us at LifeKit@npr.org.