My sister made her end-of-life wishes clear. Then dementia took hold

B efore my sister was struck by frontotemporal dementia, her wishes were very clear.

在我姐姐患上额颞叶痴呆之前，她的愿望非常明确。

No feeding tube or breathing machine if she became profoundly incapacitated, without the prospect of recovery.

如果她严重丧失行为能力，没有康复的希望，就没有喂食管或呼吸机。

No aggressive life-sustaining measures.

没有积极的维持生命措施。

But that was then, when the prospect of becoming infirm was abstract.

但那时，变得虚弱的前景还很抽象。

When illness descended, my sister changed.

当疾病降临时，姐姐变了。

And I found myself wondering whose wishes we should respect.

我发现自己想知道我们应该尊重谁的意愿。

My sister, as she had been?

我的妹妹，还是以前那样吗？

Or my sister, as she was now?

还是像现在这样的我妹妹？

My sister-before-FTD was one of the most verbal people I’ve ever met.

我在加入 FTD 之前的姐姐是我见过的最爱说话的人之一。

Hum a tune from a musical comedy, and she’d merrily sing every verse.

哼着音乐喜剧的曲调，她会愉快地唱出每一节。

Her memory for lyrics was encyclopedic.

她对歌词的记忆就像百科全书一样。

She was proud of her Ivy League degree, gratified by her professional accomplishments, and effusive about her three children.

她为自己的常春藤盟校学位感到自豪，对自己的职业成就感到满意，并对她的三个孩子充满热情。

Generous and sensitive, volatile and argumentative, she liked to be the center of attention.

她慷慨而敏感，反复无常且爱争论，喜欢成为众人瞩目的焦点。

The type of dementia that overcame her strikes the brain’s frontal lobes, which regulate behavior, putting a brake on impulses and allowing reason to moderate emotion.

战胜她的那种痴呆症会影响大脑的额叶，额叶负责调节行为，抑制冲动，让理性调节情绪。

This part of the brain allows people to plan, think ahead, put things in context, have insight.

大脑的这一部分使人们能够计划、提前思考、将事情放在上下文中并具有洞察力。

Without these abilities, my sister didn’t understand that she was ill — a condition known as anosognosia.

如果没有这些能力，我姐姐就不知道自己病了——这种情况被称为失认症。

Nor could she appreciate her limitations.

她也无法意识到自己的局限性。

She’d stand in front of the coffee pot holding a bag of coffee, uncertain how to proceed.

她拿着一袋咖啡站在咖啡壶前，不确定如何继续。

Opening the cabinet to find a filter, putting the filter in the top of the coffee maker, pouring in water, pushing the “start” button — these were steps in a sequence she could no longer follow.

打开柜子找到过滤器，将过滤器放在咖啡机顶部，倒入水，按下“开始”按钮——这些步骤她再也无法遵循。

But hand my sister a cup of coffee from Starbucks and her eyes would light up.

但递给我妹妹一杯星巴克的咖啡，她的眼睛就会亮起来。

Her taste for a cup of Americano never diminished.

她对美式咖啡的品味从未减弱。

She was there — and not there — at the same time.

她同时在那里——又不在那里。

Herself, yet entirely different.

她自己，却完全不同。

When did dementia begin poking holes in my sister’s mind?

痴呆症什么时候开始在我姐姐的脑海中出现漏洞？

I started suspecting something was wrong in 2012, after several disconcerting incidents.

2012 年发生了几起令人不安的事件后，我开始怀疑出了什么问题。

But the diagnosis didn’t come until the spring of 2013.

但直到 2013 年春天，诊断结果才出来。

It was inconceivable.

这是不可思议的。

My sister, the youngest in our family, had long feared that she would develop an incurable neurological illness — as had my mother, who had multiple sclerosis.

我的妹妹是我们家里最小的一个，长期以来一直担心自己会患上无法治愈的神经系统疾病，就像我患有多发性硬化症的母亲一样。

It’s why she insisted that if incapacity enveloped her and hope fled, she wanted her life to end.

这就是为什么她坚持认为，如果她感到无能、希望破灭，她希望结束自己的生命。

Yet as my sister’s illness progressed, something entirely unexpected happened.

然而，随着我姐姐病情的进展，一些完全出乎意料的事情发生了。

Her demanding nature softened.

她苛求的本性变得柔和了。

She seemed to enjoy life more.

她似乎更加享受生活。

Was it because she could no longer remember the experiences that had troubled her for years?

是因为她已经记不起那些困扰她多年的经历了吗？

Or had she let go of the past?

还是说她已经放下过去了？

Was it because she had become apathetic — a symptom of FTD?

是因为她变得冷漠——这是 FTD 的症状吗？

Or had she learned how to live, happily, in the moment?

或者她是否学会了如何快乐地活在当下？

It seemed she had entered a different dimension of human experience — the world of dementia, where a different set of rules applied.

她似乎进入了人类经历的另一个维度——痴呆症的世界，那里适用着一套不同的规则。

But how were those of us who lived outside that dimension supposed to follow her?

但我们这些生活在那个维度之外的人该如何追随她呢？

How were we to know what she was really feeling, what she really wanted, in her altered state?

在她改变的状态下，我们如何知道她的真实感受，她真正想要什么？

I’d come to my sister’s house and find her in a sweater covered with coffee stains.

我来到姐姐家，发现她穿着一件沾满咖啡渍的毛衣。

Because her swallowing wasn’t reliable, liquid would spill out of her mouth, onto her chest.

由于她的吞咽不可靠，液体会从她的嘴里溢出到她的胸部。

She used to be picky about her appearance.

她曾经对自己的外表很挑剔。

Bright colors, bold patterns, jingly bracelets, nice necklaces, striking earrings — that was her signature style.

鲜艳的色彩、大胆的图案、叮当作响的手镯、漂亮的项链、引人注目的耳环——这是她的标志性风格。

I knew it was time to let go of the way things were and take my sister as she was: often messy, sometimes unkempt, yet almost always smiling.

我知道是时候放弃现状了，接受我姐姐的本来面目：经常凌乱，有时蓬头垢面，但几乎总是微笑。

This was a small adjustment, all things considered.

综合考虑，这是一个小小的调整。

But it meant learning to suspend judgment — that impulse to exclaim, if only internally, “You’re not the same!”

但这意味着学会暂停判断——那种冲动，即使只是在内心惊呼，“你不一样了！”

I knew enough about dementia to know that even if I didn’t speak the words, she might perceive a flash of judgment cross my face.

我对痴呆症了解得足够多，知道即使我不说这些话，她也可能会察觉到我脸上闪过一丝判断力。

Even when reason fails, intuition remains.

即使理性失败，直觉仍然存在。

Still, it was hard to let go.

尽管如此，还是很难放手。

If my sister put on a blouse inside-out, I’d have her put it on again — the right way.

如果我姐姐把一件衬衫翻过来，我会让她再穿上——以正确的方式。

I’d take her out to get her hair washed and her nails done.

我会带她出去洗头、修指甲。

Or I’d coax her to take off the parka she wore around the house and throw it in the laundry.

或者我会哄她脱下她在家里穿的派克大衣，然后把它扔进洗衣房。

As if trying to ensure she was presentable would fend off disaster.

好像努力确保她得体就能避免灾难一样。

Which it didn’t.

但事实并非如此。

What my sister needed most from me, I felt, was reassurance that things were OK and she wasn’t being judged.

我觉得，我姐姐最需要我的是让我放心，一切都很好，她没有受到评判。

That became harder as her dementia progressed and a terrible new problem — amyotrophic lateral sclerosis, or ALS — emerged.

随着她的痴呆症恶化，并且出现了一个可怕的新问题——肌萎缩侧索硬化症（ALS），这变得更加困难。

My sister began to fall when she went out to walk the dog.

我姐姐出去遛狗时开始摔倒。

Unaware of the need to protect herself, she’d land on her face, nearly knocking out some teeth.

她没有意识到需要保护自己，所以脸着地，差点撞掉一些牙齿。

She couldn’t be relied upon to shut the gas off after she’d taken a pot from the stove.

不能指望她从炉子上拿走锅后就关掉煤气。

She forgot how to turn the key in the back door and let herself in.

她忘记了如何转动后门的钥匙并让自己进去。

Worrying about my sister’s safety became an obsession.

担心姐姐的安全成了一种困扰。

Would she make it down the stairs of her home without taking a tumble?

她能顺利走下家的楼梯而不摔倒吗？

If she lit up a cigarette, would she remember to snuff it out?

如果她点燃一支烟，她会记得把它掐灭吗？

Would she wander off and get lost and not be able to ask for help?

她会不会走失、迷路而无法寻求帮助？

Her voice had been getting softer and sometimes I couldn’t understand her.

她的声音越来越小，有时我听不懂她的话。

Two years ago, just around this time of year, she stopped talking altogether as her vocal cords stopped functioning.

两年前，大约每年的这个时候，她因为声带停止运作而完全停止说话。

My impulse was to protect her.

我的本能就是保护她。

Her impulse was to do her own thing.

她的冲动是做自己的事。

What was the right balance?

什么是正确的平衡？

None of us knew.

我们谁也不知道。

No one could tell us.

没有人能告诉我们。

My precociously verbal sister became mute.

我那早熟、爱说话的妹妹变得沉默寡言。

Another step into a new dimension of being.

又迈出了新的存在维度。

We communicated as very young children communicate with their parents.

我们的交流就像年幼的孩子与父母的交流一样。

We smiled.

我们笑了。

We held hands.

我们手牵着手。

We walked side by side under trees that were turning yellow and red in the brilliant fall sunshine.

我们并肩走在树下，树在秋日灿烂的阳光下变成了黄色和红色。

For a while, my sister could write.

有一段时间，我姐姐可以写字了。

Every now and then, she’d use a word that reminded me of her prodigious vocabulary.

她时不时会使用一个让我想起她丰富的词汇量的词。

Was it possible that her keen intelligence remained intact at some level?

难道她敏锐的智力在某种程度上仍然完好无损？

One day, she wrote that she didn’t want to be seen as disabled.

有一天，她写道，她不想被视为残疾人。

I was so flummoxed, I wrote out “you aren’t” followed by an inappropriate series of “ha ha ha’s .”

我很困惑，写下了“你不是”，然后是一系列不恰当的“哈哈哈”。

I wanted to keep things lighthearted.

我想让事情变得轻松愉快。

I didn’t want to scare my sister or let her see how scared I was.

我不想吓到姐姐，也不想让她看到我有多害怕。

Mostly, she remained sunny.

大多数时候，她都保持着阳光的心态。

Sometimes, I felt that a lamp inside her had been lit and was shining through her being.

有时，我感觉她内心有一盏灯被点燃，照亮了她的全身。

It was as if everything inessential was being stripped away.

仿佛一切无关紧要的东西都被剥夺了。

And as that happened, a kind of simplicity and purity emerged.

当这种情况发生时，一种简单和纯粹就出现了。

For my sister, being safe wasn’t a priority.

对于我姐姐来说，安全并不是首要任务。

Her foremost concern was retaining some degree of control over her life.

她最关心的是对自己的生活保持一定程度的控制。

But there came a point when she couldn’t be left at home, alone, any longer.

但到了某个时刻，她不能再被留在家里，一个人了。

An aide was hired; she didn’t last after my sister made it clear she wanted nothing to do with her.

聘请了一名助手；在我姐姐明确表示不想与她有任何关系后，她并没有坚持下去。

Another aide came and stayed longer.

另一位助手来了，并待了更长时间。

But my sister didn’t want to be supervised.

但我姐姐不想被监督。

Tensions grew.

紧张局势加剧。

The situation became untenable.

情况变得难以为继。

It was a crazy time.

那是一段疯狂的时光。

My sister didn’t know why she needed someone to take her to the store, or walk with her on the street, or check on her when she was in the bathroom.

我姐姐不知道为什么她需要有人带她去商店，或者陪她在街上散步，或者在她上厕所时检查她。

And yet, the list of things she couldn’t do kept mounting.

然而，她不能做的事情却越来越多。

She would grab a candy bar, tear off the wrapper and stuff it into her mouth.

她会抓起一块棒棒糖，撕掉包装纸，塞进嘴里。

I’d have to rush up to her and pull it out to keep her from choking.

我必须冲到她身边，把它拉出来，以免她窒息。

The conflict was wrenching.

冲突令人痛苦。

I wanted to protect her.

我想保护她。

But I could only do so by saying, “no, don’t do that,” over and over.

但我只能一遍又一遍地说“不，不要那样做”。

She could only be safe if she sat hands folded in her lap, doing nothing.

只有双手交叉放在腿上，什么也不做，她才安全。

But it was past time when my sister could call the shots.

但姐姐可以做主的时候已经过去了。

She needed attending to, whether she liked it or not.

无论她喜欢与否，她都需要照顾。

We foresaw a string of aides who would come and leave when my sister’s hostility proved unrelenting.

我们预见到当我姐姐的敌意无情时，一连串的助手会来来去去。

Her cherished wish, to be cared for at home, was becoming impossible.

她渴望在家得到照顾的愿望变得不可能了。

We who spent time with my sister during her final months may have thought, “this is horrible, this loss of capacity.”

我们这些在姐姐最后几个月陪伴她的人可能会想：“这太可怕了，这种能力的丧失。”

It was as if her super-ego had disappeared.

就好像她的超我消失了。

The internal critic that had bothered my sister for much of her life was gone.

困扰我姐姐一生大部分时间的内心批评已经消失了。

I suspected that this critic had a part in the wishes my sister had expressed before her illness.

我怀疑这位批评家也参与了我姐姐患病前所表达的愿望。

It couldn’t tolerate the prospect of severe impairment.

它无法容忍严重受损的前景。

Or dependency.

或者依赖。

Or exposure.

或者曝光。

Or vulnerability.

或脆弱性。

Yet my sister had reached that state, all those states, and she was calm.

然而我姐姐已经达到了那种状态，所有这些状态，她很平静。

She seemed happy.

她看起来很高兴。

We will never know what my sister thought during that time.

我们永远不会知道我姐姐那段时间的想法。

She couldn’t talk and she didn’t write much.

她不会说话，也没有写太多东西。

When she did, it was clear she wasn’t a reliable narrator.

当她这样做时，很明显她不是一个可靠的叙述者。

By then, she’d moved to a memory care center.

那时，她已经搬到了记忆护理中心。

I had dreaded that decision, put off for as long as possible.

我一直害怕这个决定，所以尽可能地推迟。

I was sure my sister would be miserable in this facility, surrounded by frail men and women several decades older.

我确信我的妹妹在这个设施里会很痛苦，周围都是年长数十岁的虚弱男女。

She high-fived the staff as she walked up and down the halls for hours every day.

她每天在大厅里走来走去几个小时，与工作人员击掌。

She danced with a male aide she seemed to like.

她和一位她似乎喜欢的男助手跳舞。

She became so well-known so quickly, she was named resident of the month not long after she moved in.

她很快就出名了，搬进来后不久就被评为当月居民。

Was the quality of her life what she had imagined as acceptable?

她的生活质量是否如她想象的那样可以接受？

No. Did those of us who knew her best think she was remarkably well-adjusted and content?

不。我们这些最了解她的人是否认为她适应能力非常好并且很满足？

Yes.

是的。

I never would have predicted this.

我永远不会预料到这一点。

Which goes to show how little we know of what the future may hold.

这表明我们对未来的了解是多么的少。

All we can do is guess.

我们能做的就是猜测。

The last months of her life, my sister seemed to become smaller and even more childlike.

在她生命的最后几个月，我的妹妹似乎变得更小，甚至更孩子气了。

She’d lost more than 50 pounds over the course of a year and was almost entirely unable to swallow.

一年内她减重超过 50 磅，而且几乎完全无法吞咽。

The day before she entered inpatient hospice, I was with her as she choked at lunch and her eyes flooded with terror.

在她进入住院临终关怀医院的前一天，我和她在一起，当时她在午餐时哽咽，她的眼睛里充满了恐惧。

No, I thought then.

不，我当时想。

She cannot go this way, feeling out of control and terrified.

她不能走这条路，她感到失控和恐惧。

But what was the alternative?

但还有什么选择呢？

Would she want a feeding tube to keep her alive?

她想要一根饲管来维持她的生命吗？

The medical literature recommends against feeding tubes for people with end-stage dementia.

医学文献建议不要对终末期痴呆症患者进行饲管喂养。

My sister’s wishes before she became ill were clear.

姐姐生病前的愿望很明确。

Her life had value, of that I was sure.

我确信她的生命有价值。

That idea that value is erased by disability — that was clearly wrong.

认为残疾会抹杀价值的想法——这显然是错误的。

There was no course forward.

没有前进的方向。

A feeding tube would only prolong an inexorable process that was clearly underway.

饲管只会延长显然正在进行的不可阻挡的过程。

I had learned that the light of my sister’s spirit was stronger than her illness.

我了解到姐姐的精神之光比她的疾病更强大。

It would survive.

它会生存下来。

In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth.

在住院临终关怀中心，我们用滴管给我妹妹注射液体，将其喷到她的嘴后部。

Sometimes, she could take a bit of applesauce on a spoon.

有时，她可以用勺子盛一点苹果酱。

We’d wait to hear a gulping swallowing sound.

我们等着听到吞咽的声音。

And then, after giving her time to rest, we’d try again.

然后，在给她时间休息后，我们会再试一次。

We never sat down and talked about my sister’s wishes.

我们从未坐下来谈论我姐姐的愿望。

But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect.

但他们告诉我们正在发生的事情以及另一组愿望，我们都理解但从未明确表达过：“尊重我。

Be there by my side.

就在我身边。

Love me.

爱我。

Remember me.”

记住我。”

In the end, the feeding tube was a side issue.

最后，饲管是一个次要问题。

My sister was dying, one way or another, and nothing could change that trajectory.

我的妹妹正在死去，无论怎样，没有什么可以改变这一轨迹。

Her husband and children decided against artificial nutrition or hydration.

她的丈夫和孩子决定不接受人工营养或补水。

It was what she’d said she wanted.

这就是她所说的她想要的。

They don’t regret it.

他们并不后悔。

Neither do I.

我也没有。

We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier.

我们并没有因为我姐姐早些时候提出的愿望而放弃饲管。

We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily.

我们通过确保她不会遭受不必要的痛苦来尊重她曾经的人和她现在的样子。

Every step of the way, we let her know her life had value.

每一步，我们都让她知道她的生命是有价值的。

And when the hard times came, we didn’t duck.

当困难时期到来时，我们没有回避。

We were fully present.

我们完全在场。

My sister passed peacefully last November, surrounded by people she loved.

去年十一月，我姐姐在她所爱的人的陪伴下安详地去世了。

She was 58.

她58岁了。

When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end.

现在想起她，我想到的是一个浪漫的女孩，一个意气风发的大学生，一个奋斗的20多岁，一个充满激情的妻子和母亲，一个对生活的渴望和内心光芒一直闪耀到最后的痴呆症患者。

That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life.

那盏灯已经成为一盏灯塔，加深了我对作为人类的意义以及生命终结时的可能性的认识。

I carry it with me to this day.

直到今天我还带着它。

Thank you for your article!!

谢谢你的文章！！

This is my husband.

这是我的丈夫。

He is now 58, was diagnosed with dementia a little over a year ago.

他现年 58 岁，一年多前被诊断出患有痴呆症。

Officially diagnosed with ALS a few months ago.

几个月前被正式诊断患有 ALS。

He was always so type A, so particular about how everything had to be done.

他总是那么A型，对每件事都必须如何完成非常挑剔。

We had a rough patch where he was angry alot, but now he just seems to be happy.

我们经历了一段艰难的时期，他经常生气，但现在他似乎很高兴。

I pray for his safety EVERYDAY.

我每天都为他的安全祈祷。

He is still at home.

他还在家里。

Years ago, before we had any reason to even think about it, he mentioned a couple of times, he never wanted to go into a nursing home.

几年前，在我们有任何理由考虑之前，他曾多次提到，他从来不想进入疗养院。

I am still able to care for him at home with the help of someone during the day.

白天我仍然可以在有人的帮助下在家照顾他。

But I do wonder if it will be more than we can handle at some point in the future.

但我确实想知道这是否会超出我们在未来某个时候能够处理的范围。

Thank you again.

再次感谢您。

Reading your article helped me to remember that I am not the first person to ever deal with this, I will get through it and maybe I can help someone else someday.

阅读你的文章帮助我记住，我不是第一个处理这个问题的人，我会克服它，也许有一天我可以帮助别人。

Because I can relate this experience to my mom – and also feel like it was giving me a window into the difficult decisions we will have to make in the future – it was difficult and also comforting to read at the same time.

因为我可以将这段经历与我的妈妈联系起来——而且也觉得它为我提供了一个了解我们将来必须做出的艰难决定的窗口——读起来既困难又令人安慰。

As our population gets older, more of us will be faced with making medical decisions for individuals who have lost the capacity to decide for themselves.

随着人口老龄化，我们中越来越多的人将面临为那些失去自我决定能力的人做出医疗决定的情况。

Because these were well-loved persons in their prime, we might be tempted to keep them alive because of the persons they used to be.

因为这些人在盛年时都是深受爱戴的人，所以我们可能会因为他们曾经的样子而想让他们活下去。

But especially when we have clear, relevant instructions from the individual who has now lost the power to decide, we should openly ask: When would be the best day for this individual to die?

但特别是当我们从现在失去决定权的个人那里得到明确的相关指示时，我们应该公开问：这个人什么时候去世最好？

As her better self (perhaps years before), what amount of mental decline would she have tolerated?

作为更好的自己（也许是几年前），她能忍受多少精神衰退？

We should not attempt to make such decisions on our own.

我们不应该试图自己做出这样的决定。

We should consult all relevant medical professionals and other family members.

我们应该咨询所有相关的医疗专业人员和其他家庭成员。

Here are some specific guidelines to help us make wise end-of-life medical decisions for patients who have lost the capacity to choose for themselves: https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-MD-ALZ.html

以下是一些具体指南，可帮助我们为失去自我选择能力的患者做出明智的临终医疗决定：https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-MD-ALZ.html

Judith – So much of this rings true for me and the initial diagnostic phase with my mum (she was diagnosed in her late 50s).

朱迪思——这对我和我妈妈的最初诊断阶段来说都是如此（她在 50 多岁时被诊断出）。

The lack of regard for her appearance combined with the refreshing lack of anxiety about it, the inner happiness she seems to feel compared with the sadness and loss we feel now that the dementia has progressed.

不关心她的外表，加上令人耳目一新的缺乏焦虑，与我们现在痴呆症进展所感受到的悲伤和失落相比，她似乎感受到了内心的幸福。

And as you say, the difficult issue to resolve is the distinction between what her wishes would have been and the wishes of the person she is now.

正如你所说，要解决的难题是区分她本来的愿望和她现在的愿望。

I have written about this in my blog http://www.mumhasdementia.com and there are so many things here that strike a chord – thank you for sharing this very moving story about your sister.

我在我的博客 http://www.mumhasdementia.com 中写过相关内容，这里有很多东西引起共鸣 - 感谢您分享这个关于您姐姐的非常感人的故事。

It helps so much.

它有很大帮助。

Alzheimer’s followed by ALS and then wasting at a young age relatively?

阿尔茨海默病之后是肌萎缩侧索硬化症，然后相对年轻时就消瘦了？

!

！

Why wasn’t someone looking for a cause for this improbable association of ailments?

为什么没有人寻找这种不可思议的疾病关联的原因呢？

Good that her family cared about her wishes, but the theme of this really is not following pre-illness wishes about care, but an underlying possibly treatable disease that was not detected.

很好，她的家人关心她的愿望，但这的主题实际上并不是遵循病前关于护理的愿望，而是一种未被发现的潜在的可能可治疗的疾病。

We are talking about multi-system symptoms and there are not that many causes in a differential diagnosis.

我们谈论的是多系统症状，鉴别诊断中没有那么多原因。

Start with lyme disease and bartonella.

从莱姆病和巴尔通体开始。

Distressing to read this knowing maybe it could have been treated but wasn’t.

读到这篇文章很痛苦，因为我知道也许它可以得到治疗，但没有得到治疗。

Thank you.

谢谢。

God Bless You All for sharing your feelings.

上帝保佑你们所有人分享你们的感受。

Pure love all around your experience.

纯粹的爱围绕着你的经历。

My mother is currently suffering from this disease and it is very painful for me.

我的母亲目前正患有这种疾病，这对我来说非常痛苦。

I confess I never thought this would happen to my mother.

我承认我从来没有想过这种事会发生在我母亲身上。

Sometimes I dont know what to do.

有时我不知道该怎么办。

Thank you.

谢谢。

O, so sorry to learn about your mom.

哦，很遗憾得知你妈妈的事。

FTD is a tough illness for both the person with the disease and those who love her or him.

FTD 对于患者和爱她或他的人来说都是一种严重的疾病。

Sometimes it seems even worse because more people are familiar with Alzheimer’s.

有时情况似乎更糟，因为越来越多的人熟悉阿尔茨海默氏症。

My husband, almost 62, was diagnosed with behavioral variant FTD in September 2012, but began showing early symptoms about two years earlier.

我的丈夫快 62 岁了，于 2012 年 9 月被诊断出患有行为变异型 FTD，但大约两年前就开始出现早期症状。

If you don’t kniw about it, visit ftdsupportforum.com some time.

如果您不了解，请找时间访问 ftdsupportforum.com。

It’s a very supportive online community.

这是一个非常支持的在线社区。

You might also find there’s an in-person support group for loved ones of people with FTD through there or via your local Alzheimer’s Association.

您可能还会发现，通过那里或当地的阿尔茨海默病协会，有一个针对 FTD 患者亲人的现场支持小组。

My prayers go out to you and your dear mom.

我为你和你亲爱的妈妈祈祷。

God bless.

上帝保佑。

Sue

起诉