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萨拉的回忆,痛别失智后的父亲
What it’s like to lose your father to Alzheimer



编者按: 莎拉的父亲在与阿兹海默症搏斗数年后在近期不幸离世。Katie Jia在她的文章里为我们描绘了她这位高中同学在心爱的父亲逐渐失去记忆,并最终在告别了爱女的世界里找到安宁和解脱的痛苦心路历程。
Editor's Note: Sarah’s father recently died after several years of battling with Alzheimer’s disease.   Katie Jia writes to shed light on her high-school friend’s heart wrenching journey which saw her beloved father gradually fade into oblivion as he was seeking peace in a world without his “princess”. 
 
 
你可能时常会听说有人因为癌症和意外事故等变故痛失亲人,每到这时你肯定都会默默祈祷“这种事千万不要发生在我身上”。但是,并不是每个人都能如此幸运,有时候人们不得不经历亲人离去带来的巨大悲恸。我的一个朋友就向我讲述了痛别失智父亲的悲伤经历。

You hear about it time to time, losing someone to cancer, an accident, etc. You go through the thought “this will never happen to my family”. Not everyone is as fortunate however to spare the emotional pain and journey to experience a loved one go. One friend of mine shares her sorrowful take about the road to dementia. 


萨拉的父亲开始出现老年痴呆迹象时她才只有14岁,她称:“一些不起眼的小事情,一开始并未引起我们的太多注意。因为我爸爸本来就显得愚笨,所以我们对他的异常行为已经习以为常。他忘记了自己的电话号码,常常会发出一些不知所云的短信;他无法在我的家长信上正确签写自己的名字;他因不能再移动手指而停止弹钢琴。”

“It started off with little things, but we didn’t think too cautiously of it. My dad was always a klutz in the first place, just another one of his misbehaviors.” Sarah was 14 at the time when her father started to show signs of dementia. “He’d forget his own phone number and his text messages didn’t make much sense. He couldn’t write his name properly on my permission forms. He stopped playing the piano because he couldn’t remember how to move his fingers.”


三个星期后,萨拉父亲的诊断结果终于出来了,接着医生们又做了大量的医学测试和评估。萨拉称:“那天我刚从学校回到家,就看到我妈妈和一大堆医生正坐在客厅里等我。他们说的其他话我都没有听进去,只有老年痴呆症这个词不断在我脑海中回响。”萨拉的父亲在被确诊罹患老年痴呆症时还很年轻,当时他只有62岁,而萨拉两天后就会迎来15岁生日。但自那刻起,她的世界便开始崩溃。

It was only after three weeks the diagnosis came in. An assortment of doctors continuously visited with mountains of medical tests and assessments. “I had just gotten home from school only to see my mom sitting in the living room waiting for me with a bunch of doctors. Alzheimer’s was the only word that rang through my head, as every other word they said faded away in my mind.” Sarah’s father was fairly young, being diagnosed at the age of 62, with her just turning 15 in two days, her world began to crumble.


萨拉称:“他刚被确诊时情况还不算太糟糕,他仍然可以遛狗,开车送我上学,甚至帮我妈妈做饭和洗碗。这也让我心中燃起一线希望, 认为他还会重新好起来。”这种日子的确持续了一段时间,在接下来的两个月里萨拉的生活一切如常。但是没过多久,萨拉的父亲就出现了更严重的老年痴呆迹象,他忘记怎么系鞋带,他不会独自穿服,他的思维常常开小差。他仍会固执地说自己很好,不需要帮助,但这些言辞也渐渐地失去了意义。

“When he was diagnosed it wasn’t that bad. He could still walk our dog, drive me to school, even help mom cook and do the dishes. It gave me this tiny bit of hope that he may resume a normal life.” And it wasn’t too bad for a while – at least for the next two months. However, the signs got worse. He could no longer tie his own shoelaces; he had trouble putting on his own clothes; his mind started to wander off. He would say that he’s fine and doesn’t need help—a willful statement as he slowly slid into defenselessness. 


萨拉一家因此决定将他送进老年痴呆病房,以保障他的安全。接下来萨拉每天便在重复着从学校到医院再到兼职单位的三点一线的路程。在那些和父亲相处的宝贵时光里,她仍然觉得一切都会好起来。她会握着父亲的手向他讲述自己一天的生活, 并告诉他家里发生的事情。在前几次去医院探望父亲时,萨拉总会忍不住哭泣,但她很快就学会控制自己的眼泪以让父亲安心。萨拉称,“每当我们要离开时,他都会抓着我的手满眼含泪地看着我,并告诉我他有多爱我。”正是这些话让萨拉一直满怀希望,但老年痴呆症却是终将会摧毁她父亲的定时炸弹。

Sarah’s family decided to place him in an Alzheimer’s ward, for his own safety. It became a routine for Sarah, from school to hospital to her part time job and repeat. It was those precious hours with her father that she still felt everything was going to be okay. She’d tell him about her day while holding his hand and told him stories of what was going on at home. The first couple of visits would leave her crying, but she learned to keep it in for her father’s sake. “Before we left every time, he’d grab my hands and look at me with his tearful eyes and tell me how much he loved me.” It was those words that would make everything okay for Sarah, but Alzheimer’s was just a ticking time bomb before her father’s fall.

 
萨拉接下来所说的话让我心感沉重并忍不住落泪。她说“你知道自己的爸爸两眼看着你但却认不出你是什么感觉吗?”老年痴呆是一种残忍的疾病,一旦被确诊罹患这种疾病,患者便会一步步走向彻底失智。无论你如何让自己做好准备,一句“你是谁”仍会让身边的人痛彻心扉。

What Sarah said next made my heart sink as tears swelled up. “Do you know what it’s like to have your own dad look at you in the eyes and not even recognize a single trace of you?” Alzheimer’s is a cruel disease. Once the diagnostic is out, from there it’s all preparation for the final decline. However no matter how much you prepare yourself, the words “who are you” will strike anyone with pain. 


萨拉称:“尽管我一次次恳求和祈祷,他都认不出自己的小公主。我给他看那些旧时家庭录像片,包括他在秋千上推我,我的小学毕业照,还有有一年我向他脸上扔蛋糕等,但他只会笑着问‘这个小女孩是谁?’我不得不接受我爸爸已经将我彻底忘记,我不再是他的小公主的事实。”当父亲已经不能自己进食,并说不出连贯的句子时,萨拉知道自己的父亲已经时日无多,那个滴答作响的定时炸弹即将引爆。

“No matter how many times I begged and pleaded, he couldn’t recognize his little princess. I showed him old home videos of him swinging me around like a rocket, pictures from my elementary school graduation, and that one year I threw cake on his face. All he would do is chuckle and say ‘who’s the little girl?’ I came to terms that I was no longer in my father’s memory, I wasn’t his little princess anymore.” Sarah knew that her father’s time was coming. He could no longer eat on his own, his sentences were no longer coherent, the ticking bomb was about to detonate. 


在与病魔抗争多年后,萨拉的父亲于今年4月底去世。他在患病后肯定多少意识到悲惨结局,可以想象他在这一过程中所经历的痛苦与恐惧。萨拉还向我解释了为什么父亲去世时她会有种如释重负的感觉。她称:“当我看着他离世时我一直握着他的手,但是这么多年来我第一次感觉到他似乎真的已经归于安宁。我希望他会重新生活在一个不会被剥夺了演奏音乐、遛狗和回忆家人的快乐时光找的世界里。”

After years of battling against his own demons, Sarah’s father passed away late April. He must have had some awareness of where his fate was headed, I could only imagine how frightening and painful it must have been. Sarah explained to me how she was kind of relieved when he passed. “I held his hand as I watched him go, but for the first time in years, I felt like he actually seemed at peace. I want him to reach a world where he wouldn’t be deprived of his happiness like playing music, walking max, remembering his family.”  

 
老年痴呆症会让我们的至亲失去生活乐趣。不仅是与病魔抗争的患者,他们身边的亲人也会痛苦万分。萨拉将会在没有父亲的陪伴下从大学毕业,然后结婚成家。尽管父亲生命的最后几年让萨拉深感痛心,但她的脑海里仍充满了幸福和快乐的回忆,这也是她的父亲留给她的永恒美好的回忆。莎拉称:“我唯一的愿望就是他能再叫一次我的名字。”

Alzheimer’s steals the joy of living from those that we love forcefully. Not just those who are battling the disease, but those who surround it as well. Sarah will go on to graduate from university, get married, have a family, all without the presence of her father. Her true memories filled with joy and happiness, those are what will forever define her father despite the last couple of years. “My only wish was for him to call me by my name one more time.” 
 
 
 

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