Caregivers need more help: groups

Lee Wen-chi, front, who has been confined to his wheelchair for 25 years as a result of spine problems, is pictured yesterday with his wife, Lee Lin-yen, back, at a party held by Hsinchu County government to encourage patients with spine problems. Care groups yesterday called on the public and the government to support those who care for family members who have long-term health problems and highlighted the difficulties they face. PHOTO: CHEN WEI-JEN, TAIPEI TIMES

The recent suicide of Lee Tien-yu (李天佑), a professor at the Department of Information and Computer Education at National Taiwan Normal University, who spent years looking after two sons with muscular dystrophy, prompted the Taiwan Association of Family Caregivers yesterday to stress the importance of emotional support for long-term family caregivers.

Lee killed himself after his second son's medical condition took a turn for the worse.

The association also urged the government to do more for this sector by providing in-house community care and support staff to fill in for family caregivers on a regular basis.

"Good friends, relatives and government resources will make the journey for long-term family caregivers much easier. Only by looking after themselves first can caregivers look after their family members properly," said Chen Chin-ling (陳金玲), president of the Taiwan Association of Family Caregivers.

Speaking the experiences of people who are the main providers of care for family members who need long-term aid, Lee Chiung-jung (李瓊蓉), of the Taiwan Motor Neuron Disease Association said, "Some of these caregivers have a journey of 10 to 20 years ahead of them. Due to limited governmental and social support, they face battles that are difficult to imagine."

She spoke of the financial and emotional requirements of sufferers of Amyotrophic Lateral Sclerosis, a disease where patients eventually lose control of all body functions, saying that they often depend on three tubes -- for feeding, excrement and breathing -- to survive.

Chen Chiu-chuan (陳秋娟) a council member of the Taiwan Association of Family Caregivers told of looking after her husband, who was in a vegetative state.

"After six months of constant body turning, burping, putting food mix into tubes and cleaning tubes, I collapsed. I wasn't getting more than two hours of uninterrupted sleep; I couldn't do anything properly," she said.

Hung Yu-ling (洪郁翎), chief of the Division of Patient Services at the Taiwan Foundation for Rare Disorders, emphasized the importance of family caregivers getting "rest stops and breaks" to recover their mental stamina.

She said Lee had suffered from depression before his death and had been on medication on and off.

According to statistics provided by the Directorate General of Budget Accounting and Statistics, in 2000, there were 338,417 people in need of long-term care, with over 80.44 percent of them being looked after by their families, figures which Shieh Tung-ru (謝東儒), Secretary General of the League of Welfare Organizations for the Disabled, said made providing support for family care givers all the more vital.

Tiffany Chen (陳郁芬), said that the government provides only two hours of care per month for the slightly disabled, 16 hours for those with intermediate-level handicaps and 32 hours for those with severe handicaps.

"Members of our society have complained that this is not enough. What can you do with two hours a month?" she said.

This compares with Denmark, which provides up to 24 hours of paid around-the-clock care for disabled members of a community.

"Patients and family members are even allowed to choose which caregivers they would prefer," said Yu Shu-hua (游淑華), council member of the Taiwan Motor Neuron Disease Association.

According to Yu, in Japan 24-hour care is also provided through a combination of caregivers paid by the government and volunteer services from social care sectors.