PBS高端访谈:孝女瑞贝卡长期照顾老年痴呆症母亲

 　　JEFFREY BROWN:And now the first in an occasional series of stories about long-term care.

　　With baby boomers aging and living longer, more people will need it. But new research has shown most Americans have done little or nothing to plan for these situations that can carry a heavy emotional and economic toll¹.

　　We're calling our series “Taking Care.”

　　Ray Suarez kicks it off with the story of one family's struggle with a debilitating² disease.

　　REBECCA WYANT, Caregiver: This is my mother, Mary Elizabeth Wyant. She is 74 years old and was diagnosed with Alzheimer's at the age of 65. She is a retired³ professional artist and a former professor at the University of Arizona.

　　My name is Rebecca Wyant. And I'm her youngest daughter and her primary caregiver and guardian⁴.

　　RAY SUAREZ:It's been nine years since Mary Wyant was first diagnosed with Alzheimer's. In 2006, she moved in with her daughter, making Rebecca part of a growing population of Americans, now nearly one in five adults, who provide unpaid⁵ care for family members over the age of 50.

　　Rebecca says her mother used to be a fun-loving and vibrant⁶ artist who was always at the center of attention.

　　REBECCA WYANT:Very creative, very outgoing, very gregarious⁷, very much a social butterfly, just really liked to be around people. And she could take nothing and create something magnificent from that, so very smart. But more, I think, anything, it was just her energy and her social skills and her ability to engage with people, with anybody.

　　RAY SUAREZ:Today, that Mary still comes out from time to time, but often it's seen only in short spurts⁸ and can be followed by rapid mood swings, incoherent outbursts and blank stares.

　　Mary exhibits all the symptoms of what the Alzheimer's Association has called the defining disease of baby boomers, with 10 million in that age group expected to develop this form of dementia in the coming years.

　　Jeanette Wendt is Mary's neurologist.

　　DR. JEANETTE WENDT, Neurologist: She has very severe language difficulties and has very severe memory problems and really has the inability to take care of herself in almost all aspects.

　　RAY SUAREZ:Moving to Tucson was a homecoming of sorts for Mary, who had raised her daughters there, but had been living in Central America with her second husband. When the marriage fell apart, Rebecca became Mary's legal guardian and her primary caregiver.

　　Rebecca, who is 48 years old and unmarried, is now on call from the moment Mary wakes up every morning, getting her mother out of bed and dressed, and then helping⁹ to brush her teeth, combing her hair and figuring out new strategies for medication.

　　REBECCA WYANT:You're going to choke on them. Here.

　　RAY SUAREZ:It can be stressful and difficult.

　　REBECCA WYANT:It's a 115-pound 2-year-old who is not potty-trained.

　　RAY SUAREZ:Even awkward at times in public.

　　REBECCA WYANT:People still when they talk to her speak in a very loud voice, because they think people with Alzheimer's can't hear. Or they speak very slowly. And I try and explain to them she's not understanding what you are saying, so you don't have to worry about that. I mean, just speak in your normal voice and just go with the flow.

　　But it's very uncomfortable for a lot of people, because they don't understand the disease. And the problem is, for every single person with Alzheimer's, it's totally different.

　　RAY SUAREZ:But Rebecca says people need to understand that her family's situation, all of it, is normal, and not without its special moments.

　　REBECCA WYANT:Every now and then, she will -- I don't know what sparks in her mind, but she will just say -- she will say, "Oh," and she will turn and she will look at me and she has something to say to me. You can just see it in her face, and then it's gone. But, for that moment, you just know, I know she's still in there. So when she manages to let a little bit of that out, it's wonderful.

　　RAY SUAREZ:Rebecca owns a self-serve dog wash and retail¹⁰ business, and brings Mary to work, where she will stay until the shop closes in the evening. It's round-the-clock care that Rebecca says she was willing to take on for one simple reason.

　　REBECCA WYANT:Nobody can take care of my mother the way I can. Nobody understands my mother the way I do. And someone can take care of her and provide sustenance¹¹, but no one can take care of my mother the way I can.

　　RAY SUAREZ:And the experiences of the Wyant family will likely be shared by millions in the coming decades. The number of Americans 65 and older is expected to more than double in the next 40 years, due in large part to aging baby boomers.

　　The government estimates 70 percent of those over the age of 65 will need some form of long-term care. But a recent poll conducted by the Associated Press and the National Opinion Research Center found nearly two-thirds of Americans over the age of 40 have done little or no planning for their potential long-term care needs, such as setting aside money or talking with family members about how they want to be cared for.

　　That survey was funded by the SCAN Foundation, which is a NewsHour underwriter.

　　Again, Dr. Jeanette Wendt:

　　JEANETTE WENDT:The vast majority have not thought about it and have not made plans. Even if they have an inkling or they even in their heart know that's what's going on, one, they don't want to address it with the person who has the problem.

　　RAY SUAREZ:And until it became clear Mary would need long-term care, the Wyants hadn't discussed the subject either.

　　REBECCA WYANT:There was really no long-term planning. It was just like, right now, what do we have to do? Right now, someone's got to be her guardian, because I have got to have the ability to make decisions for her on any level. And we didn't want to wait until it got so bad.

　　RAY SUAREZ:The issues around aging are easy to ignore and often difficult to talk about and address, but communities around the country, including Tucson, have long had federally funded programs that are supposed to help people like the Wyants.

　　In 1965, President Lyndon Johnson signed the Older Americans Act, which provided for the creation of a national network of agencies on aging to support community social services for older people.

　　Tucson's Pima Council on Aging is one, with caregiver specialists like Suzy Bourque.

　　SUZY BOURQUE, Pima Council on Aging: Often, people will come in for a parent, but then they will think, OK, this tells me, I need to do my own powers of attorney. I need to think about how I'm going to pay for long-term care. So, I think most people, they need to think about the fact that whatever care they may develop a need for is going to be very costly¹².

　　RAY SUAREZ:Bourque also connects caregivers to experts and services, and Rebecca has contacted the agency several times with basic questions. But like many organizations dealing¹³ with budget cuts, this one has to do what it can with less. It's had to cut back on how many people it serves.

　　SUZY BOURQUE:The population of the, you know, over 60 in Tucson has greatly increased. So we're not meeting the need even as well as we did 20 years ago.

　　RAY SUAREZ: That means caregivers like Rebecca Wyant often must navigate¹⁴ a complicated and opaque¹⁵ health care system practically alone.

　　Rebecca had been paying for Mary's care with her own earnings¹⁶ and with her mother's assets. But when Mary's money was gone, she qualified¹⁷ for financial assistance through Arizona's Long Term Care program, but the enrollment¹⁸ process took several years. Now the state pays Rebecca for some of the time she spends looking after her mother, 14 hours each week, or roughly $500 dollars a month. It's a small amount, but money Rebecca says she is immensely grateful for.

　　REBECCA WYANT:I'm not being paid by someone else. I don't have a paycheck that I bring home every two weeks. I don't have benefits that I receive from an employer. If the business makes some money, that doesn't necessarily come to me. It goes back into the business, so any little bit helps.

　　RAY SUAREZ:But long-term care doesn't just exhaust financial resources. Dr. Wendt is concerned that, like many full-time¹⁹ caregivers, Rebecca may be putting her own health at risk.

　　JEANETTE WENDT:She's a great caregiver, but I think she is at great risk of burnout, because you never know what they are going to do in the middle of the night. You never know if they are going to get up and try to leave the house or turn the stove on and try to make something, or burn the house down. I mean, it's really always on edge. And so it's extremely stressful.

　　RAY SUAREZ:Rebecca, as a small business owner, has been unable to find affordable²⁰ health insurance that could help her manage the physical and emotional toll.

　　And she says she also doesn't have the money to put her mother into a long-term care facility she would be comfortable with. Even so, she's happy to still have Mary at home.

　　REBECCA WYANT:It's not always perfect, but she's my mother. And so that's the way you have to look at this disease. You can't dwell on what was or what might be. It's what it is today. And so she's alive. She's functioning. She's getting up. She's moving around. She has happy moments and not-so-happy moments, but it's not a sad situation.

　　RAY SUAREZ:Rebecca plans to take care of Mary for as long as she possibly can, even if she has to sell her business to do it.

　　JEFFREY BROWN:Online, you can see how Alzheimer's has affected²¹ Mary Wyant's artwork. We have a multimedia²² slide show from the painter. And how do you recognize the early warning signs of Alzheimer's? We have more information on our Health page.

1 toll   

n.过路(桥)费；损失，伤亡人数；v.敲(钟)

参考例句：

• The hailstone took a heavy toll of the crops in our village last night.昨晚那场冰雹损坏了我们村的庄稼。
• The war took a heavy toll of human life.这次战争夺去了许多人的生命。

2 debilitating   

a.使衰弱的

参考例句：

• The debilitating disease made him too weak to work. 这个令他衰弱的病，使他弱到没有办法工作。
• You may soon leave one debilitating condition or relationship forever. 你即将永远地和这段霉运说拜拜了。

3 retired   

adj.隐退的，退休的，退役的

参考例句：

• The old man retired to the country for rest.这位老人下乡休息去了。
• Many retired people take up gardening as a hobby.许多退休的人都以从事园艺为嗜好。

4 guardian   

n.监护人；守卫者，保护者

参考例句：

• The form must be signed by the child's parents or guardian. 这张表格须由孩子的家长或监护人签字。
• The press is a guardian of the public weal. 报刊是公共福利的卫护者。

5 unpaid   

adj.未付款的，无报酬的

参考例句：

• Doctors work excessive unpaid overtime.医生过度加班却无报酬。
• He's doing a month's unpaid work experience with an engineering firm.他正在一家工程公司无偿工作一个月以获得工作经验。

6 vibrant   

adj.震颤的，响亮的，充满活力的，精力充沛的，(色彩)鲜明的

参考例句：

• He always uses vibrant colours in his paintings. 他在画中总是使用鲜明的色彩。
• She gave a vibrant performance in the leading role in the school play.她在学校表演中生气盎然地扮演了主角。

7 gregarious   

adj.群居的，喜好群居的

参考例句：

• These animals are highly gregarious.这些动物非常喜欢群居。
• They are gregarious birds and feed in flocks.它们是群居鸟类，会集群觅食。

8 spurts   

短暂而突然的活动或努力( spurt的名词复数 )； 突然奋起

参考例句：

• Great spurts of gas shoot out of the sun. 太阳气体射出形成大爆发。
• Spurts of warm rain blew fitfully against their faces. 阵阵温热的雨点拍打在他们脸上。

9 helping   

n.食物的一份&adj.帮助人的，辅助的

参考例句：

• The poor children regularly pony up for a second helping of my hamburger. 那些可怜的孩子们总是要求我把我的汉堡包再给他们一份。
• By doing this, they may at times be helping to restore competition. 这样一来, 他在某些时候,有助于竞争的加强。

10 retail   

v./n.零售；adv.以零售价格

参考例句：

• In this shop they retail tobacco and sweets.这家铺子零售香烟和糖果。
• These shoes retail at 10 yuan a pair.这些鞋子零卖10元一双。

11 sustenance   

n.食物，粮食；生活资料；生计

参考例句：

• We derive our sustenance from the land.我们从土地获取食物。
• The urban homeless are often in desperate need of sustenance.城市里无家可归的人极其需要食物来维持生命。

12 costly   

adj.昂贵的，价值高的，豪华的

参考例句：

• It must be very costly to keep up a house like this.维修这么一幢房子一定很昂贵。
• This dictionary is very useful,only it is a bit costly.这本词典很有用，左不过贵了些。

13 dealing   

n.经商方法，待人态度

参考例句：

• This store has an excellent reputation for fair dealing.该商店因买卖公道而享有极高的声誉。
• His fair dealing earned our confidence.他的诚实的行为获得我们的信任。

14 navigate   

v.航行，飞行；导航，领航

参考例句：

• He was the first man to navigate the Atlantic by air.他是第一个飞越大西洋的人。
• Such boats can navigate on the Nile.这种船可以在尼罗河上航行。

15 opaque   

adj.不透光的；不反光的，不传导的；晦涩的

参考例句：

• The windows are of opaque glass.这些窗户装着不透明玻璃。
• Their intentions remained opaque.他们的意图仍然令人费解。

16 earnings   

n.工资收人；利润，利益，所得

参考例句：

• That old man lives on the earnings of his daughter.那个老人靠他女儿的收入维持生活。
• Last year there was a 20% decrease in his earnings.去年他的收入减少了20%。

17 qualified   

adj.合格的，有资格的，胜任的，有限制的

参考例句：

• He is qualified as a complete man of letters.他有资格当真正的文学家。
• We must note that we still lack qualified specialists.我们必须看到我们还缺乏有资质的专家。

18 enrollment   

n.注册或登记的人数；登记

参考例句：

• You will be given a reading list at enrollment.注册时你会收到一份阅读书目。
• I just got the enrollment notice from Fudan University.我刚刚接到复旦大学的入学通知书。

19 full-time   

adj.满工作日的或工作周的，全时间的

参考例句：

• A full-time job may be too much for her.全天工作她恐怕吃不消。
• I don't know how she copes with looking after her family and doing a full-time job.既要照顾家庭又要全天工作，我不知道她是如何对付的。

20 affordable   

adj.支付得起的，不太昂贵的

参考例句：

• The rent for the four-roomed house is affordable.四居室房屋的房租付得起。
• There are few affordable apartments in big cities.在大城市中没有几所公寓是便宜的。

21 affected   

adj.不自然的，假装的

参考例句：

• She showed an affected interest in our subject.她假装对我们的课题感到兴趣。
• His manners are affected.他的态度不自然。

22 multimedia   

adj.多种手段的，多媒体的；n.多媒体

参考例句：

• Multimedia is the combination of computer and video technology.多媒体是计算机和视频技术的结合。
• Adam raised the issue of multimedia applications and much useful discussion ensued.亚当提出了多媒体应用的问题，从而引发了许多有益的讨论。