4月19日《科学美国人》节选：The Human Toll of Alzheimer’s

　　原文译文

　　*注：本文摘自4月19日《科学美国人》

　　The Human Toll of Alzheimer’s

　　阿尔茨海默氏症的死亡人数

　　1. I have learned that when someone you love has Alzheimer's, he or she is not the only one facing memory issues. Do we remember the bright, sunny person full of life and creativity, or do we remember the person who no longer recognizes us, who lies in a bed in a nursing home, gasping for air? Do we remember the lover with whom we could share our body, our thoughts and our adventures or the person who cannot finish a sentence or find the bathroom? How do we live with the fact that the individual actually died years before his or her body stopped? The ghastliness of Alzheimer's seems to push out everything else. I am finding it hard to remember ordinary life with Carol before Alzheimer's.

　　我知道，当所爱之人身患阿尔兹海默症的时候，并不是只有她/他会受记忆问题困扰。我们记得的是那个阳光聪明，活力满满，创造力无限的人吗？还是那个再也认不出我们，只能躺在养老院的病床上喘气的人？是那个与我们灵肉一体，一起冒险的爱人？还是那个一句话都说不完整，洗手间也找不到的人？我们怎样才能接受一个人在他/她的身体停止活动之前就已经离开这个事实？阿尔兹海默症的可怕之处在于，它把所有一切美好都带走了。我发现我很难再回忆起卡罗尔患病之前我们的日常生活是什么样的了。

　　2. My wife, Carol Howard, was diagnosed with early-onset Alzheimer's in her early 60s. I slowly watched her disintegrate, watched her beautiful mind be deconstructed part by part, watched sentience slowly fade until she was, well, not here.

　　我的妻子卡罗尔·霍华德(Carol Howard)在60岁出头的时候被诊断出患有早发性阿尔茨海默氏症。我看着她慢慢恶化，聪明的大脑慢慢糊涂，知觉慢慢消失，直到她去世。

　　3. When she learned the diagnosis, she was determined to fight the disease. She enlisted in two clinical trials of potential drugs, both of which failed. When we realized what was inevitable, she told me that she wanted me to scream for her when she was gone. She was angry that several decades' worth of Alzheimer's research had produced no hope. There is no cure; there is no good treatment.

　　刚知道诊断结果的时候，她决心和病魔作斗争。她参与了2起潜在药物的临床试验，但是都失败了。后来我们意识到一切都不可避免的时候，她告诉我，她想让我因她去世而痛哭。阿尔兹海默症研究已有几十个年头，但是仍然一无所获，卡罗尔很生气。没有治愈该症的方法，连好的治疗办法都没有。

图片来源网络

　　4. I will tell you who she was and what she became. She was a woman of great beauty, with eyes of summer-sky blue. She was peaceful and brilliant, gentle and kind. I met her when she took a science communication course I taught at the University of California, Santa Cruz. She always put the right word in precisely the right place. Carol studied marine biology and wrote a popular book about her doctoral work with two Atlantic bottlenose dolphins. For 15 idyllic years we lived in the redwood forest of the Santa Cruz Mountains, writing. She eventually moved with me to Baltimore and worked at the Center for Alternatives to Animal Testing at the Johns Hopkins Bloomberg School of Public Health, an excellent job that she loved.

　　我和你们吧，说说她患病之前的样子和患病之后的样子。她非常漂亮，有着一双如天空般湛蓝的眼睛。她聪明平和，温柔善良。我是在加州大学圣克鲁斯分校(University of California, Santa Cruz)上我教科学传播课时认识的她。她总是能准确地表达一切。卡罗尔研究海洋生物学，她的博士研究是关于两只大西洋宽吻海豚的，她就此写了一本书，很受欢迎。我们一起在圣克鲁斯山脉的红杉林中过了15年田园般的生活，专心写作。后来，她和我一起搬到了巴尔的摩，在约翰霍普金斯大学彭博公共卫生学院的动物替代试验中心工作，这份工作很好，她很喜欢。

　　5. About six years ago odd things began to happen. Carol blacked out occasionally. Her libido disappeared. One night she sat in front of her office computer weeping because she had forgotten how to download a file. She stopped reading books. Soon there was medical testing, and then the dreadful diagnosis.

　　大约六年前，怪事发生了。卡罗尔有时候会昏厥过去，她的活力消失了。有一天晚上，她坐在办公室的电脑前哭泣，因为她忘了怎么下载文件。她不再阅读。我们很快做了检查，得到了很可怕的诊断——她患有阿尔兹海默症。

　　6. She still loved walking, but she started getting lost, so I gave her a GPS tracker. When she could not find her way on her own, I would fetch her, or one of our neighbors would bring her home. One time she got out of the house (which had not been locked properly) and started shrieking in the street. At a family Thanksgiving gathering she left our bedroom and walked about the house naked. When things got worse, she would sit for hours in a living room chair, staring at nothing, the light in her glorious eyes dead. I would talk to her, tell her about my day, without the slightest reason to think she heard me or would respond. There were two of us in the house, but I was alone.

　　她仍然喜欢散步，但她有时候会迷路，所以我给了她一个GPS追踪器，这样，她迷路的时候，我就能找到她，邻居也能把她送回来。有一次，她从家里跑出去(房门可能没锁好)，在大街上尖叫。还有一次，在感恩节的聚会上，她走出卧室，裸着身子在屋里到处跑。病情恶化之后，她有时候会在客厅的椅子上坐上几个小时，发呆，她那美丽的眼睛里在没有任何神采。我会和她说话，但是她不会回应我。家里是我和她两个人，但我时常感到孤独。

　　7. In January last year I fell, broke my knee and several ribs, and had to be taken to a hospital. Our daughter, Hannah, knowing neither she nor I would be able to take care of her mother, found a good nursing home for Carol that took Medicaid. I recovered and regularly visited her twice a week, monitoring her decline. She once thought I was her father. On two occasions I saw her physically resist help, showing a fierce aggression I never thought possible in her.

　　去年一月，我摔坏了膝盖，也摔断里几根肋骨，被送到了医院。我们的女儿汉娜觉得我们无法照顾卡罗尔了，就帮她找了一家有医疗补助的疗养院。我恢复之后，每周去看她两次，观察她的身体状况。她曾以为我是她爸。还有两次，我看到她暴力抵抗别人的帮助，表现出一种我从没有见过的强烈攻击性。