“Man-chuan, when are you coming back? Come back soon, would you?”

Two years ago, Fall. Chang, in the middle of work, listened to her mother sobbing from the other side of the phone. What’s wrong? What happened to Father? “I don’t want to talk about this. Just come back soon.”

Chang hurried home. Her father seemed fine. “Is everything alright?” “Sure!” Her father answered with a Mainland accent.

Yet her 90-year-old father had lost the ability to eat, to sleep, to maintain his weight, which kept creeping down until one day, her mother called her saying that he couldn’t stand on his feet anymore. Before Chang could reach home, her mother called again, telling her to call emergency.

The First Emergency Experience Two Years Ago

She found her father lying in the emergency room, with a blood pressure surging up to 200. She looked into his red, swollen eyes, as he clung to his daughter’s hand, asking her not to intubate, not to resuscitate, but call her brother, who was living in Taoyuan, to come and see him for the last time. “I’m cold.” He groaned. “I’m dying.” Chang sat straight in a chair beside him for the rest of the night.

Dawn broke. Mother arrived at the emergency. The old woman with a mild Hydrocephalus left for the toilet without returning. Chang searched all restrooms, swung each stall door open, but still didn’t find her mother. Stressed out, she broke down in tears when her father urged her to go home and rest.

“Mother’s gone!” Her cry was merely background noise in the bustling emergency department; her father was merely a name for one bed in the emergency; the Changs were merely one of the many suffering families in Taiwan’s aging society.

That was Chang’s first emergency experience. After two weeks of admission, her father was discharged for “having nothing wrong.” Yet before long, a family reunion in Chinese New Year became a nightmare when friends and relatives were called into a room and given harsh reprimands by her Father for nothing. Supposing that it might be dementia, she took her father to run tests, but the doctor ruled out the possibility. So Chang’s life went on, with her father still unable to eat nor sleep, clinging her hand all day long talking about his past as an intelligence agent.

Or worse, asking her not to leave for work.

‘I’m Dying. Don’t Leave Me.’

Chang had a schedule for work, and a habit of writing until one or two in the morning each day. Yet her father would swing her door open at five, and tell her “Call your publisher right now. Cancel all events and classes.”

“Why?” “You’re father is dying, and you still want to go outside? From now on, no leaving.”

Two weeks passed. Father was not dying. Chang was finally allowed to leave the house. “It was tough, but more to the heart,” she said faintly.

A glimpse of the Death Reaper sent her father to his second emergency. He trembled all over for eight hours, but stubbornly refused to be taken away by the paramedics, believing what he was told back in his hometown, that people die once they leave their bed. Struggling with the paramedics, he suddenly jumped up and collapsed off bed like in the movie The Exorcist, shocking her mother into tears. The paramedics could only suggest Chang to wait until he falls asleep. After feeding him some sleeping pills, she finally could send her father to emergency.

Chang’s father was sent to emergency 4 times over the past 2 years (demonstrative photo taken by Mintang Huang)

'Thank Him For Keeping it Until 90 Years Old'

This time, her father was diagnosed psychosis, now known as schizophrenia.

Finally, the truth came out. This explained everything, from his disability to eat and sleep, to his utter hate towards the world as if being possessed. The diagnosis did not shock the daughter.

She recalled the days when her father often let out desperate cries in the middle of night, waking up the whole family. Her mother would pat him on the back, tell him it was nothing but a dream, and calm him down. However, since his psychosis broke out, he never let out cries at night anymore. Perhaps the sub-consciousness had eroded the consciousness, she thought.

 “I thank God for this blessing. If my father’s illness broke out 20-30 years earlier, I would have had a tragic childhood, and I wouldn’t have become who I am now. It all happened when I’ve already had the ability to accept and deal with it. I also thank my father for keeping this until his 90s.”

Things have bettered since her father started taking medication for psychosis. The problem was that mental health patients tend to refuse medication once they feel better, and end up in a relapse. Chang’s father started to hear what others can’t. He felt he had supernatural powers.

 ‘I Feel Sad, But Not for Long. I Would Force Myself Up.’

A relapse sent her father to his third emergency, and he was later transferred to psychological facilities. He got furious and rejected all medication, hating his daughter for sending him to a “mental hospital.” Chang had no choice but to bring him home, but as soon as they reached home, her father wanted to leave.

“You don’t have to. I will.” She packed a small suitcase and left home. Since her father’s relapse, Chang had become a regular customer of a small hotel.

Being the daughter who has been taking care of her father on her own, the daughter who has grown physically and mentally exhausted, but also the daughter who got hated by her father, how does she feel?

“I feel sad sometimes, but I won’t let it last more than two minutes. He had mental disorders! What can you say?”

Image: Mingtang Huang

The fourth emergency broke out when her father broke his leg in the bathroom. This time, Chang was able to calmly cancel all scheduled events in the emergency room, and post her new series on Facebook—You Never Really Know Life Until You Take Care Of Your Aged Parents.

How Could This Be a Blessing?

A comment on her Facebook once said “Taking care of your parents is a blessing reward. We take care of them as they used to have taken care of us.” She got quite sure that the person who left the comment must have zero experience in this, because taking care of parents is different from raising children.

“When you don’t have time to sleep for months, and you can only rely on antidepressant pills to keep on, how could you say that’s a blessed reward?” She said in her usual gentle tone, but quickened a bit.

It is hard to imagine that Chang, well-known among Asian readers for her novel When The Ocean Is Blue (海水正藍) and her renowned elegance of beauty and charm, would stand out embodying the tenacity and bravery of a caregiver to encourage all those struggling with the stress of taking care of their aged parents.

Chang’s story was not uncommon. Nearly 1.1 million disabled in Taiwan are taken care by middle-aged sons and daughters around the island, for an average of 13.6 hours a day, 9.9 years in total. They are bearing unspeakable burdens, too.

Chang went quiet for a while. “These years, reality has been pushing me to change. When I was writing When The Ocean Is Blue, I thought everything was simply black or white. Now I know, most of it is grey, and in these grey areas, we get to decide whether we would see it as black or white.”

Translated from Chinese by Sharon Tseng

---

Additional Reading

♦ Bank Chairman Quits for His Father's Long-Term Care
♦ The Home Care Medical Revolution
♦ ‘Care Café’ Serves Seniors as well as Community