Over a million people in Hong Kong are chronically ill - much of their care falls to family members. But with little community support, caregivers, struggling on their own, often become victims of chronic illness themselves. Li Yao reports.

Kwok Man-kwan, 57, had no idea what would happen next. Her husband had a stroke. It didn't seem that bad when it happened - back in November 2011.

"I was so ignorant about what happens with a stroke. My son and I rushed my husband to the hospital - then suddenly, he woke up. He sat up. I thought he would be up and about soon," Kwok recalled. The picture of her husband "back to normal" as she imagined was not close to the reality of what was coming.

Regina Lee has seen many stories of family tragedy unfold in this way. Lee is deputy director of the World Health Organization Collaborating Centre for Community Health Services at the Hong Kong Polytechnic University.

"Caregivers don't have their own lives. They can't meet friends. They can't go out, because no one will take their place to look after the patient," Lee said. "What awaits them is the daily routine, preparing meals, feeding, changing diapers, taking the patient for a bath."

It took time for the impact of the new reality to strike home to Kwok. Soon, she learned that her husband, Shum Chi-yan, 73, had suffered a midbrain stroke. He was bedridden, couldn't talk, couldn't swallow food, couldn't remember his wife and son. He was transferred to a private ward at Kowloon Hospital a week after the stroke felled him. Kwok took heart - at first. She learned later separate rooms are reserved for the gravely ill, at risk of dying.

About 1.15 million people in Hong Kong are chronically ill. Responsibility for most of the care and attention they need falls on loved ones. The caregivers eventually succumb to the long hours, lack of sleep, the responsibilities tacked on to demands of a job, a career, or the needs of other family members. They try to stay strong - try to be the backbone of the family but it's a losing battle. They fall into depression, and as time goes by, become chronically ill themselves.

Rode through crisis

Kwok's husband clung to life and made it through the crisis. Kwok's trials were just beginning. She was left pretty much on her own when she took up caring for Shum. The stress came on quickly. She's a kindergarten teacher who goes to work, comes home, does the family chores - then, off to the hospital to care for her husband.

Tensions arose between her relationship with her son, 21. He can't face visiting his father in hospital. "My son sees a silly old man acting like a baby. He is probably scared that he might lose his father. Yet he does not know how to deal with it and chooses to avoid seeing him," Kwok said.

In the meantime, Kwok started losing weight. She was overcome with fatigue, insomnia, joint pain, stomach distention. Her ordeal became her daily routine. Her doctor called it stress and prescribed medicine.

Many caregivers have no support from their extended family. They do not even know what community resources are available, Regina Lee said.

Lee recalled her interview with a man in his 70s, who was taking care of his wife after a severe stroke. "The man was in tears. He said he thought about jumping off a building. He didn't, only because he felt if he were gone, nobody would take care of his wife," Lee said.

Though caregivers typically have family ties to the people they care for, the responsibility for taking care of the chronically ill would fall on the community at large if the caregivers were not there. Community support for the caregivers is not very good. Arguably, it's non-existent. Lee believes the government should deal with the needs of the caregivers who are likely to become a burden on the community if they don't get some help.

Samuel Wong, division head of family medicine and primary health care at the Chinese University of Hong Kong, led a study this year, introducing a "mindfulness-based intervention" for caregivers, to reduce their stress and improve their mental well being. "Most of the caregivers showed depressive symptoms," Wong said. "Meditation is a self-support mechanism to help them build more coping skills."

There were 140 caregivers of stroke and dementia patients who took part in the study. They were divided into two groups. One group of 70 attended meditation sessions for two-and-a-half hours every week over an eight-week period. The second group of 70 caregivers - the control group - was given standard community caregiver education.

The results of the study showed that the mindfulness-based intervention was more effective in reducing depression and improving overall mental health of caregivers. The study group, given the meditation training, achieved higher feelings of self-sufficiency to manage their chronic stress, Wong said.

Many of those under the care of close family members refuse to go to nursing homes. "They hear the stories. They fear elderly people are not even treated as humans," Wong said. They rely on in-home care by family members, and when government subsidies and community support don't catch up, the caregivers are left to carry on the burden on their own, he explained.

Family finances became troublesome for Kwok. Her husband had made a small fortune practicing traditional Chinese medicine but Kwok had no access to the funds. The account was in his name only.

In March 2012, Kwok found a nursing home for her husband. It cost HK$15,000 a month. And it costs Kwok HK$60,000 a year for her son to go to university. She'll be retiring in three years and doesn't know how long she can hang on after that.

Samuel Wong argues that to safeguard the health of caregivers, the government must review its social welfare policies and provide more assistance to chronically ill patients and the family members who take care of them. In the end, he adds, it will be good for the community as a whole.

Not totally neglected

Some subsidies are available for caregivers. Seniors aged 65 and above can use healthcare vouchers valued at up to HK$1,000 a year for their individual medical needs. Many caregivers are under 65, like Kwok. There're no vouchers to help her.

In 2008, the Hospital Authority initiated a "Primary Care Partnership Project" in Tin Shui Wai. It covers seven illnesses, including diabetes, hypertension and chronic obstructive airway disease. Patients are allowed up to 10 visits a year to private doctors at a fee of only HK$45 per visit. It's the same as patients are charged at general outpatient clinics.

Some 1,600 patients have availed the program thus far. The plan is to expand the project to three other districts, according to Choy Khai-meng, chief manager of service transformation of the Hospital Authority.

Lawmakers like Kwok Ka-ki from the Civic Party don't think much of the partnership. Kwok says the program has proven ineffective. It's attracted only a small number of patients and private doctors. He says the subsidies offered private doctors were too low, and so they were not keen to offer their best services.

The government should increase subsidies to private clinics and establish more community-based healthcare networks, Wong said.

As the existing subsidies cover only a few diseases, the caregivers of most chronically ill patients have to pay expensive medical bills on their own without subsidies.

In August, Kwok Man-kwan found she had lipoma, a benign tumor growing from body fat cells on her left upper arm. She panicked. Her doctor performed surgery to remove the growth, waived the operation fee, and charged HK$700 for use of the equipment and medical supplies.

Kwok is grateful not only for the discount. "I feel emotionally dependent on my doctor. He is the one I feel comfortable to talk to when I am stressed out. These family matters are private issues that I can't open up casually to other people," she said.

While she has cut down her visits to once a month, Kwok says she now brings her son for informal psychological counseling as well.

"I see no end to all the stress. Sometimes I imagined after my husband died, I might be better off after mourning for a couple of years," Kwok said, "but how could I give up on him? He was the one by my side and helping me fight breast cancer 11 years ago."

Contact the writer at liyao@chinadaily.com.cn

(HK Edition 10/18/2013 page2)