I think we all have things which are sentimental to all of us.

Acceptance is hard.

Because you are different from my memory – which contains the little, though wholesome, fragments of what you are and who you once were.

Because I am piecing together the extremes of this reality and your past paradise.

Because you are changing from the you I used to know.

Because I’m still finding new ways to love you every single day.

I love the way you smile everytime you find something to snack on, regardless of whether it’s good for you.

I love the way you hobble with that courage for life, soldiering on — even though you complain so much.

I love the way you cuddle us with such delight, as you embrace new-found ways of showing affection.

And I do so, even with the knowledge of the sombre reality that, one day, you’ll leave us.

Someday. We’ll all live by the light of your presence.

Thank you, thank you so much for this journey.

Love Always,
Your loving grandson.

Thoughts by the author:

I wrote this story not only because this is for someone I love. This is for people who care, who think that they are all alone — sad, lonely and depressed — seeing their loved ones face the onslaught of dementia. Their grit is what should inspire you not to give up loving the people you love.

In the novel, when main character Akiko’s mother-in-law died a sudden death, her typically difficult father-in-law became a “person in a trance” (Alzheimer’s disease).

He had, at 84 years old, morphed into a child who needed her constant attention.

He lost his sense of direction and could not remember his son and grandson (though he could somehow remember his daughter-in-law, Akiko). He could not remember when to eat. When his dementia advanced, he could not control his bowel movements and had to wear diapers.

Medical advancements are cruel, wrote the author, because they allow Man to neither fully live nor die.

We will grow old one day.

If we are unfortunate enough to be diagnosed with Alzheimer’s Disease, will our families view us as burdens that can neither fully live nor die?

At this moment, I think of Aunt.

Aunt has been stricken with Alzheimer’s for a number of years, and can no longer recognise the family members she lives with.

It is as though there is an eraser hidden in her brain that erases her memory bit by bit.

In the past, she had a chatty personality but she soon began to mirror Akiko’s father-in-law where he “used hazy eyes to stare into space; maybe he was hovering in between dreamscape and reality”.

Once, Aunt found herself lost when she went to the market near her home to purchase her groceries in the morning. She started to panic and scurried around the vicinity of the market, tearing up uncontrollably.

How she wished to find her way home!

Thankfully, an old neighbour spotted her before bringing her home.

After that incident, she did not dare to step out of the house alone.

Burden of caregiving

The Hong Kong movie “Summer Snow” (1995) also addressed the issue of Alzheimer’s disease. When the main character’s mother-in-law passed away, her father-in-law started to behave oddly. After a medical examination, he was diagnosed with Alzheimer’s disease. The main character’s nightmare began when she started to take care of her father-in-law.

A Korean friend recounts, “Great-grandmother has Alzheimer’s disease. She lived till she was in her nineties but this was taxing for her caregiver, my grandmother. My grandfather was the typical chauvinist – standing by the sidelines and not doing anything.

“Great-grandmother would defecate everywhere and she would smear her excrement on the walls. No amount of air freshener could mask the pungent odour that filled her bedroom. Because Grandmother was the only caregiver and had to carry the burden, she once lost her temper at the clueless Great-grandmother. There was one instance when Grandmother suggested sending Great-grandmother to a nursing home. The family vehemently disagreed – it was an outrageous sin and it would not be filial of them to do so. But they were only good at paying lip service without lifting a finger to help alleviate Grandmother’s load. Grandmother’s nightmare only ended when Great-grandmother passed away.”

“Medical advancements are cruel,” wrote the author, “because they allow Man to neither fully live nor die.” Did my friend’s grandmother have this thought?

Please let me remember you

Charles K. Kao, the 2009 Nobel Prize winner in Physics for “groundbreaking achievements concerning the transmission of light in fibers for optical communication” was diagnosed with Alzheimer’s Disease in 2004. He has forgotten what fiber optics are but he still remembers his wife.

Even though his condition deteriorated day by day, the former President of the United States, Ronald Reagan, remembered his wife Nancy Davis.

I do not know why but after reading this, I felt extremely touched. It seems that even when they have been emptied of their memories, they still tried very hard not to forget their loved ones. Every day seems to be a struggle to scream the words: “Please let me remember you.”

To die with dignity is a privilege

Akiko’s husband Nobutoshi, when he witnessed the degradation of his father, thought, “I hope I die before such an illness strikes me”.

People hope that they can die with dignity but unfortunately, life does not work this way. No one hopes to be diagnosed with Alzheimer’s disease.

As our population ages and medical advancements are made, our life expectancies increase.

But if you are diagnosed with Alzheimer’s Disease, it does not matter if your life expectancy increases because you are “dead” inside once the illness erodes your brain cells.

One day when we are old and our hair is white, when our memories have been emptied, would our children follow in the footsteps of Akiko’s only child Min, who said, “Dad and Mum, is it possible for the both of you to not live such long lives?”

Life’s sorrow and helplessness is displayed in such a cruel and heartless manner.

When a nonagenarian died without illness or pain, not only were his aged friends not upset, they were envious that he was able “to live till 90 and die without illness or pain”. To them, it was a joy.

Yes.

It is a joy.

This piece was first published in Lianhe Zaobao. Chua Chern Nee also wrote Please Let Me Remember You for Before We Forget in January 2011.

Translation from original Chinese article《恍惚的人》to English by Fanny Koh. Photograph by Lee Xian Jie.

小说中女主人翁昭子在家婆骤然长逝之后，赫然发现一向难处的家翁突然变成了“恍惚的人”（痴呆症）。

八十四岁的家翁变成了一个需要昭子不时紧盯的老小孩。

他失去了方向感，不认得身边的儿子和孙子（却只认得媳妇昭子），不记得何时吃饭，甚至到了后期因大小便无法控制而不得不穿上纸尿片。

小说中有这么一句：医学进步太残酷，让人活不成死不了。

终有一天，我们也会老去。

待我们老了又不幸患上老人痴呆症，家人又是否会视我们为“活不成死不了”的沉重包袱？

此时，我想起了婶婆。

患上老人痴呆症数年的婶婆已经认不出同住在一个屋檐下的家人们。因为在她的脑袋里隐藏了一个橡皮擦。这个橡皮擦将她的记忆一件一件慢慢地擦掉。

原本话多的她也开始像昭子的家翁一样“用浑浊的眼睛望着半空，或者徘徊于梦境和现实之间”。话说有一天早晨，她到住家附近的巴刹买好菜之后，赫然发现自己居然迷路了。

她开始惊慌失措；她开始在巴刹附近四处乱窜；她甚至开始流下无助的泪水。。。

她是多么迫切地想寻找到回家的方向啊！

一位老邻居正好瞧见，就把她平安带到家。

此后，她就再也不敢独自一个人踏出家门。

香港电影《女人．四十》也触及到老人痴呆症的课题。女主人翁的家婆去世之后，家翁就开始变得反常，在医生检验下，证实他患上了老人痴呆症。从此，女主人翁的梦魇就随着照顾家翁的日常生活而开始了。

韩国友人曾曰：“曾祖母患上老人痴呆症多年。长寿的她活到了九十多岁！可这却苦了日夜照顾她的祖母。我祖父是典型的大男人，光只会用看的，却不舍得动手。曾祖母会四处大解，然后将排泄物拾起来沾在墙壁上。整个寝室弥漫着粪便的臭味。放置再多的空气清香剂也徒劳。因为所有的清洗和清理工作只有她一个人地在做，因此怒火中烧之际也会对着什么都不懂的曾祖母大吼大叫。有一次，她实在受不了，就提及送曾祖母到养老院。家族人都齐声反对，说此举乃是大逆不道，是不孝！可是，你知道吗，那些人光只会用说的，却都不愿意主动帮忙照顾曾祖母以减轻祖母的负担。祖母的梦魇是在曾祖母去世之后，才终于画上了句号。”

不晓得她祖母在照顾着曾祖母时是否可萌起这个念头“医学进步太残酷，让人活不成死不了”？

2009年诺贝尔奖物理学奖得奖者高琨患上老人痴呆症。他忘了光纤，却还记得太太。美国前总统雷根，在病情逐日严重之际，依旧还记得自己太太南西。不知道为什么，读到这一段，我突然觉得特别感动。因为，当所有的记忆几乎被掏空，他们仍然努力不让至爱从记忆中消失，生命中的每一天似乎在呼喊着“请让我记得你”这六个字。

昭子的先生信利在目睹老父一天天退化就浮起这么一个念头“无论如何都希望能在这种状况出现之前死去”。

世人都希望可以带着尊严辞世以为此生的生命篇章中画下完美的句点。然而，世间的事怎么都可能如人所愿？谁也不希望此病会找上自己。

随着人口逐渐老化，医学快速进步，人的寿命是延长了。

然而，患上老人痴呆症，即使延长了寿命，可他们脑细胞在被病魔侵蚀之后，却是“实际死亡”。

待有一天我们老了，头发白了。

记忆被掏空了，

子女们会不会效仿昭子的独子敏来这么一句：“爸爸妈妈，你们可不要活这么大的年纪？”

人生的悲哀及无奈，就是这么残酷地、无情地、赤裸裸地体现出来。

一位九旬高龄的老人无病无痛突然逝世，他些老友们非但不伤心，甚至还略带羡慕的口吻说：“活到九十岁，没受过病痛的折磨就死去，真是太幸福了。”

是的。

真是太幸福了。

这篇短文原本在《联合早报》刊登。在2011年1月，珍妮也为《勿忘我》著作了「请让我记得你」。

But it is a daily struggle not to show emotions – sympathy, sorrow, frustration, anger when dealing with the care of elderly people who have forgotten what life was like when they were still able to care for themselves and their loved ones. When loved ones get too caught up with their own lives to give a damn for our elderly people, they voluntarily forget they need to care.

This is a comment from the exhibition guestbook.

Expectations of life

That said, there are patients with severe disease who report a reasonable quality of life. One explanation is that quality of life is the discrepancy between our expectations of life and our experience of it. Patients who have low expectations or who have become accustomed to their reduced level of function may regard their quality of life as good. On the other end of the spectrum, patients with good function and high expectations may rate a minor disability as a severe reduction in quality of life (the “disability paradox”).

Hence the importance of patient peer-support groups in many chronic disease conditions: meeting someone else (amputee, arthritis, alcoholism, etc) with similar experiences (or with worse disability but coping well) puts your own expectations in context.

All these factors make it difficult to measure quality of life: people have different personalities and expectations at the beginning of their illness, people may be at different phases of their illness when their quality of life is measured, and their expectations may change over time (the “response shift”).

Dr Death

My mother used to support people who facilitated euthanasia, like the late “Dr Death”. As soon as it became available in Singapore, she signed an Advanced Medical Directive. When friends or relatives passed away, she consoled herself: “they are happier now and no longer suffering”.

Last year she was diagnosed with a progressive terminal illness. She began to talk about euthanasia for herself and how she wanted to end things while “the going was good and she was still able to get going”.

She weakened slowly over the months. She talked less about euthanasia, at least with regard to her own situation. Her attitude, however, appeared unchanged – in many of her hospitalisation episodes, she would point to someone else in the same ward and say out loud: “she shouldn’t be kept alive – she’s suffering”. (Much to our horror and embarrassment, she often said this within earshot of the family of whoever she was pointing to.)

Why measuring quality of life is important

Given how subjective quality of life is, why do doctors still look for the “perfect” measuring tool, especially in chronic disease and end-of-life situations?

In clinical practice, quality of life tools can help identify and prioritise complex problems the patient is facing. It can help communication when the patient has multiple symptoms, screen for hidden problems, and assist in shared clinical decision making.

More commonly, it helps monitor response to treatment. In cancer, for example, where some of the treatments have side effects that affect patients’ function, but can prolong the number of days, quality of life measures are used.

As a research tool, quality of life measures can compare two different treatments for the same disease or symptom where outcome measures are not clear. A simplified example would be: comparing one treatment which prolongs life by 2 months but has severe side effects, with another treatment that prolongs life by 1 month with minor side effects.

What happens when the patient cannot communicate their wishes? In such situations, we often expect their partners or close family to act as their proxies – people who know what the patient would want in a similar situation and who would act in their best interests. How much is the agreement between the patient and their partner, or between the patient and their healthcare worker? – Studies have shown fairly good agreements (almost half were identical or close ratings, and less than 20% showed profound discrepancies).

But is that enough? Unfortunately, as in the story mentioned in the beginning of the article, not everyone accepts this assumption. We can ask as many people as we can what they would wish in the same situation, but they are not that person. Even if you are that person, things may change over time.

Peaches

My mother’s disease continued to progress. A few times, she was admitted to the intensive care unit. Each time, she would initially refuse intubation, and we would talk her into accepting it.

She recovered well each time – somehow proving that we (her “proxies”) had been right to “persuade” her into accepting life-support measures.

I left for a brief period of training in Australia when her disease looked stable. She was suffering from a bad bout of oral thrush infection when I left, and our farewell dinner was quite disappointing – her favourite curry dish “only tasted of pain” and she stared at the food on the table mumbling, “What a waste…”

When peach season arrived in Australia, I lamented to myself that I could not bring the peaches back home for my mum, who loves peaches.

Midway through my training, I received a phone call. My mother was in intensive care again. I booked my flight back. On the way out of the house, I grabbed a bag of peaches from the kitchen.

I stayed in Singapore long enough to see my mother out of intensive care and extubated. She devoured the peaches. I took her out on home leave while in hospital, back to her favourite restaurant. Her oral thrush infection had been treated and she wolfed down her food.

Her memory is fading, and she now needs to be in a wheelchair when she goes out. She used to be imperiously impatient and pride herself in being the fastest to do anything – one of her favourite phrases was “time and tide and Irene wait for no man, woman or child”. Now, whenever we tell her it is time to do something – go out with us, take a shower, change her clothes… she would refuse to let us help her (not even with the simplest task of getting dressed), scold us for not giving her time to think, then stop and stare around her, looking for something she would never find.

I don’t know what she would have thought of herself last year, had she seen herself now.

Yet, she has stopped talking about ending her life, and seems to be enjoying it.

Dr Wong Ting Hway is an Associate Consultant in the Department of General Surgery of Singapore General Hospital.

This photograph, courtesy of Dr Wong, was taken at her graduation from Cambridge University in 1992, with sister, and mother, Dr Irene Giam, PhD (right). This story first appeared in the September/October 2011 issue of Salubris, a newsletter of National Cancer Centre Singapore, as “Quality of Life – A personal and professional perspective”. The article is republished here with permission.

Dr Wong’s mother suffers from vascular dementia due to a progressive terminal illness. They are featured in the Before We Forget documentary. In May, Dr Wong contributed “Rewriting the obituary” to Before We Forget.

A comment from the Before We Forget exhibition guestbook.

My great-grandmother, the one time I saw her before she left my family forever, did not know me. I had thought she was gone. My mother had been ashamed to let me know her, fearing it will be her turn. Don’t be ashamed of what you have now.

A comment from the Before We Forget exhibition guestbook.

How I miss your presence in my life. Though your body is still here, dementia has stolen your memory and taken you away from us. Eight years have passed since dementia first appeared in your life, and it has completely conquered your mind. You are no longer aware of your own identity, let alone the identities of those whom you so loved before.

As your child, it is extremely saddening to watch what you have to go through. The only thing I can do is to simply surround you with love and affection, as you did when you were raising us, so that the rest of your life may be filled with happiness and be free from worries.

Though the stress and exhaustion can sometimes take its toll on my patience, I’ll try my best to contain my frustrations. Mother, please forgive me for my moments of weakness. I will always remember the love and affection you showered upon me in your health, to strengthen my patience and respect for you.

My dearest mother, thank you for being so loving and for always wanting the best for me. Your happiness and good health will always be in my prayers.

Read the original letter in Bahasa Melayu. This translation is provided by Salimah’s daughter, Azira Amran, who also shared a story about her grandmother.

Betapa aku merindui kehadiran mu di-dalam hidup ini. Walau jasad mu masih bersama kami namun, demensia telah meragut daya ingatan mu dan membawa mu jauh dari kami. Setelah lapan tahun berlalu semenjak demensia mula mengganggu hidup mu, kini ia telah berjaya menakluki fikiranmu sepenuhnya. Sehinggakan kau tidak lagi mengenali siapa dirimu dan identiti ahli famili yang amat kau kasihi dahulu.

Sesungguhnya anak mu merasa teramat hiba dengan keadaan yang terpaksa ibu lalui sekarang ini. Apa yang terdaya oleh anak mu kini hanyalah untuk menjaga mu dengan penuh kasih dan sayang sebagaimana kau telah membesarkan kami. Semuga sisa-sisa hidup mu masih diselubungi dengan kebahagiaan dan terhindar dari kegusaran.

Namun, ada ketika tekanan hidup dan kepayahan menghadapi ujian menjaga keadaanmu yang kekadang amat mancabar kesabaran, anak mu tewas jua membendung frustrasi yang di-rasai. Ibu, maafkan lah anak mu diwaktu-waktu kelemahan itu. Akan ku selalu ingati belaian kasih dan sayang yang kau berikan padaku sewaktu sihatmu; bagi menguatkan daya kesabaran dan keinsafan ku.

Wahai ibu yang amat ku kasihi, terima kasih kerana telah menjadi seorang ibu yang amat penyayang dan terbaik buatku; doa ku sentiasa untuk kesejahteraanmu.

Read the English translation by Salimah’s daughter, Azira Amran, who also shared a story about her grandmother.

I would incur my mother’s wrath when I disturbed grandmother’s sleep by making lots of noise, but grandmother never got angry with me and used to defend me whenever I got a scolding (or beating) from my mother for doing something wrong. It is this form of caring that made our relationship such a close one.

She used to live with my parents and I but her dementia made things difficult. When she started having mood swings and started hearing voices in her head, which told her to look for “somebody”, we would always have stop whatever we were doing and follow her around.

I felt frustrated and helpless. It was an arduous journey because my parents could not give up their jobs to provide full time care and I, too, could not stay at home as I was in university.

After two years, we decided to place her in a nursing home. It was a difficult decision but it was safer for her in a nursing home, where chances of her falling would be minimised. We still visit her weekly, and we have seen her get better over time. Until we are able to afford a live-in maid, I believe it is best that she stays there.

It has been a heart-wrenching journey. But we need to remind ourselves that she did not make our lives difficult on purpose. She is just as helpless as we are. We can only give her the best care we can provide, let her live her final years with pride, and with as much happiness as possible.

Grandmother might not be the same as before, but I will always love her.