Win-win for both generations?
"Caregiving is an unrelenting 24/7, 365-day-a-year job. You can imagine the pressure," says Chen Yu-fen. Caregiving is a job where "life is exchanged." The younger generation is willing to exchange youthful years for an extension of the elder person's life, but caregiving often gives the caregiver a feeling that nothing has been accomplished, and this is very painful to them.
Wu Shwu-chong points out there is a completely different state of mind associated with caring for the elderly and caring for children. The health of the elderly constantly deteriorates. Not only does this sadden the caregiver, the caregiver feels the future holds no hope.
It is especially those caring for patients with dementia or mental illness who are on call 24 hours and suffer in silence. Dr. Fu Chung-ling of the General Neurology Division at Taipei Veterans General Hospital has conducted a survey among caregivers for dementia suffers. One third of the respondents showed a tendency toward depression.
Yu-chuan (not her real name), who lives in Chiayi, is an example. Yu-chuan was married only one month when her mother-in-law had a heart attack brought on by her diabetes. With no time even for the joys of a new bride, Yu-chuan had to bury herself in work caring for her mother-in-law.
"My husband was an only son, and maybe my mother-in-law felt I had stolen him from her," is how Yu-chuan explains why her mother-in-law fell ill.
The traditionally minded mother-in-law had frequently criticized her friends' children for not being filial when they "dumped off" the work of caring for them on a Filipina maid. When she herself became ill, naturally she was not willing to have a maid care for her, and it followed as a matter of course that the job fell to her only daughter-in-law.
With three meals plus snacks, Yu-chuan prepared food six times a day with reduced oil and salt in strict accordance with the doctor's orders, and she also ate with her mother-in-law to provide some encouragement for her. But the mother-in-law showed no thanks for her efforts, and if she didn't feel well, she blamed it on the poor food Yu-chuan had prepared.
This kind of carping Yu-chuan could handle, but what was difficult to take was that the mother-in-law, who had a history of mental illness, was likely at any time to exhibit "odd behavior." For example, she would urinate in the washbasin next to the bed and then toss the contents off the balcony, or she would take Yu-chuan's business card and go around calling on people and cause trouble.
"Every morning I got up and went downstairs trembling with fear, not knowing what my mother-in-law would be up to," says Yu-chuan. For four years she was constantly "preparing for battle," with no chance at all to go to work, and the thought was always with her that she might "just die along with my mother-in-law." Even today, three years after her mother-in-law has passed away, she sometimes finds herself awakened by dreams at night.
Another example is the Hung family. When the four daughters and mother put the father, who suffered from dementia, into a nursing facility, they were questioned by their neighbors: "With so many women in the family, you mean you can't take care of one old person?" But, says Mrs. Hung, after becoming ill her husband was a completely different person. He would always be getting lost, would relieve himself anywhere and sometimes even wrap up his bowel movements and hide them in the closet. Nobody in the family could take it. Add to this that she was an elderly person herself and suffered from diabetes, and that each of the four women either had a job or a family to look after--it was really impossible to take care of him.
"In the nursing home there are trained nursing staff to take care of him, what's wrong with that?" says the eldest daughter. Every week she now goes to see him at the nursing center. The old feeling of disgust that wouldn't go away and the evil thought of "How long is he going to drag this thing out before he dies?" gradually dissipated and she has a better relationship with him now than when they lived together.
The pressure felt by many caregivers actually stems from a lack of understanding on the part of others. An example is the "elderly parent" phenomenon that has characterized Japan in recent years, where 60- and 70-year-olds are caring for 80- and 90-year-old parents. One almost 60-year-old couple was caring for the elderly father, who had diabetes and high blood pressure. They carefully did everything the doctor ordered and watched over the old man's diet very strictly, making him so unhappy that he went on a hunger strike. After he passed away relatives didn't understand and thought they had "starved the old man to death." The couple felt very hurt and thought their good intentions and filial conduct had been misinterpreted and they had been wronged but had nowhere to turn for sympathy.
No regrets?
"No regrets about life or death." Many people, Wu Shwu-chong points out, are ready to live by this motto. Everyone should respect and encourage this high-minded sentiment. But there's no hiding the fact that for many people it is not a matter of choice--they must abandon their job, return home and take over the burden of caregiving.
When a family is incapable of providing care, the government must extend a helping hand so that caregiving is no longer the overwhelmingly depressing work each family must carry out behind closed doors. The risk of this heavy burden should be shared by the entire society. Thus the creation of an adequate number of long-term care facilities of reliable quality is the direction in which many advanced countries are moving.
Currently Taiwan's long-term care system includes the Department of Health and the Department of Social Affairs of the Ministry of the Interior. Unfortunately the two are not integrated and there is no common policy direction.
At present assistance provided by county and city departments of social welfare is limited to either "in-home service" or a "special care subsidy." The targets of this help are the disabled elderly; the caregivers are only sideline beneficiaries. But for quite some time only a few people have availed themselves of these social benefits because of the many restrictions and conditions.
In the past the "in-home service" carried economic restrictions (only for middle- or lower-income elderly). This service was extended to all elderly persons in 2003 when an "In-home Service Plan for Non-Middle- or Low-Income Disabled Elderly" was begun on a provisional basis. After one year less than 15,000 elderly were enjoying this service, a very low percentage of the more than 180,000 disabled elderly.
Because the "caregiver subsidy" that was supposed to make up for losses sustained by family members who had to give up employment opportunities to provide home care was only NT$5,000, it was really impossible to pay for any kind of service. Also, there was a strict requirement that a caregiver be under 65 years old and have no income at all. As a result, this was called the "betel nut subsidy," and very few people took advantage of it.
Chen Yu-fen cites Taipei as an example. Only 80 to 90 people have requested the "special care subsidy," and the number for all of Taiwan is around 100. Wu Shwu-chong points out that the Taipei County Government made subsidy payments for a few years on a broad basis but did not spark sufficient interest, and no domestic in-home service industry was developed.
"Sunny holidays" for caregivers?
As for the treatment side, the National Health Insurance Bureau pays for two "in-home care" visits a month. Professional nurses come to the home and provide nursing guidance and care. Demand for this service is higher. In 2002 alone 122,008 payments were made.
In addition, the Department of Health provides a daycare "hospice service." Popularly known as a "sunny holiday" for caregivers, this service is available seven days a year with a subsidy of NT$1,000 per day for the disabled elderly. The caregiver can send the patient to a nursing home or care facility where 24-hour care is available and then take a few days vacation for herself. Nevertheless, according to 2003 statistics, only 2,068 people made use of this service, a smaller percentage than for in-home care.
Why don't caregivers make good use of these rare "sunny holidays?"
One caregiver says her fondest desire is to be able to take a three-day vacation. But, since it's so hard to get a vacation, why doesn't she make use of the hospice service? The reasons are that the vast majority of care facilities are not of reliable quality, transportation to take the patient to and from the facility is a lot of trouble, and there are worries that the care given will not mesh with the patient's personality or even that during the very short period of time for which the patient is handed over there might be an accident , causing a lifetime of regret on the part of the caregiver. These factors lead people to reject the government's good intentions.
In all these measures that seem to assist the caregiver there is, however, a catch.
"The root of the problem is that at the community level in-house service or hospice facilities have not really become a reality," points out Wu Shwu-chong. As long as neighborhoods lack a support system and caregivers are isolated and unsupported, there is no way to improve this situation where the caregiver has no one to share the burden with.
In recent years the Peng Wan-ru Foundation has actively promoted the idea of community-level healthcare. Professor Liu Mei-chun from National Chengchi University's Institute for Labor Research points out two reasons for this. First, idle manpower in the community can be turned toward the care industry and employment opportunities for women can be created; second, sharing the heavy burden of home care with a local community-based service can break the natural linkage between caregiving and women and further advance caregiving, heretofore unpaid, as a "paid activity."
To get fair treatment for caregivers--usually women--the elderly in some countries have a custom of "leaving the house to the caregiver." Also, to fit the notion of the elderly "growing old in their own home," a popular trend has developed in the US, Canada, Europe, Japan and Singapore where "care and living costs are mortgaged." The elderly person mortgages the house to the bank, which in turn makes regular monthly or yearly payments to the individual until she or he dies, at which time the house reverts to the bank.
The caregivers
Moving toward a community-based care industry seems feasible, but why is it so slow in coming?
Wu Shwu-chong says frankly that the reason community care can't get off the ground has a lot to do with the introduction of foreign healthcare workers. "This is a chicken or egg question," she explains. 130,000 foreign healthcare workers not only make it impossible for local workers to find employment, they also have caused us to neglect an opportunity to create a community care system. The government's policy should really take into consideration the overall, long-term picture and not just what is happening at the moment.
In addition to economic and physical help, having an emotional outlet is also extremely important for caregivers.
There are ten branches in Taiwan of the TAFC. Each month they organize an afternoon tea and provide four hours of hospice service so caregivers can get free to have tea, chat with one another and "vent." When 40 or 50 caregivers get together and start talking about things that make them feel bad, red eyes and tears--and a lot of mutual bucking-up--are inevitable. But when will the day come that caregivers will really be able to be proud of their work and no longer sing their somber song alone?