{"id":5835,"date":"2013-12-06T11:02:43","date_gmt":"2013-12-06T03:02:43","guid":{"rendered":"http:\/\/varsity.com.cuhk.edu.hk\/?p=5835"},"modified":"2022-11-16T17:08:52","modified_gmt":"2022-11-16T09:08:52","slug":"mental-health-carers","status":"publish","type":"post","link":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/2013\/12\/mental-health-carers\/","title":{"rendered":"Who Cares for the Carers?"},"content":{"rendered":"

Relatives who devote their lives to those with mental health problems are themselves vulnerable and neglected<\/strong><\/p>\n

By Elaine Tsang & Jeffrey Wong<\/strong><\/p>\n

Mico Chow Man-cheung remembers the times when he would stare at the ringing phone on his office table, his heart pounding and his hands clammy with sweat. At times like these, Chow would be filled with dread. He feared it would be a call from the police or a hospital. His wife, who suffered from depression, had previously threatened to end her life. He was afraid the call would bring bad news.<\/p>\n

Eventually, Chow left his job of 25 years\u00a0so he could devote his time to looking after his wife. What he did not realise was the pressure at home would threaten to drag him into depression too.<\/p>\n

\"Mico<\/a>
Mico Chow Man-cheung sought help from the Hong Kong Familylink Mental Health Advocacy Association by attending their workshops for carers<\/figcaption><\/figure>\n

\u201cActually there was not much I could do to help because I didn\u2019t have the knowledge to and I couldn\u2019t see any ways through which I could help my wife,\u201d says Chow. \u201cAt that moment, I was worried about whether I could handle my own moods and emotions.\u201d<\/p>\n

Adding to his concerns about how he would handle his own emotions were his fears that saying the wrong thing could further antagonise his wife. He took extreme care over his choice of words and avoided negative criticisms that might harm their relationship.<\/p>\n

Chow\u2019s wife is stable now and he has gone on to become the chairman of the Hong Kong Familylink Mental Health Advocacy Association<\/a>. But he fully understands what it is like to be one of the many carers who are walking an emotional tightrope while taking care of family members living with mental illness. According to a survey by the Baptist Oi Kwan Social Service <\/a>(BOKSS) in 2010, 70 per cent of such carers \u2013 most of whom are middle-aged women \u2013 exhibit various levels of depression symptoms.<\/p>\n

Tim Pang Hung-cheong is a community organiser at the Society for Community Organisation<\/a>, (SOCO) who advocates for the rights of the mentally-ill and their families. Apart from the emotional strains, Pang says carers also have to shoulder great financial pressures. Like Chow, some carers quit their jobs to become full-time carers. Without a stable source of income, the demands of medication and therapy become a constant headache.<\/p>\n

Treatment is available through the public system but the median waiting time for public hospitals is around seven weeks and the longest waiting period can be up to 100 weeks. Once a patient gets an appointment, consultations may last just a few minutes. Therefore many carers prefer to send their family member to private hospitals or clinics which they believe can provide better services. However, these services can cost thousands of dollars a week.<\/p>\n

Another reason families may prefer to seek private treatment is to avoid having medical records in the public system which could affect the patient or their family members\u2019 future career.<\/p>\n

\u201cA patient\u2019s family member applied for a job as a civil servant in the Hong Kong Customs and Excise Department, but he was rejected because of the family record of mental illness,\u201d Pang says.<\/p>\n

Stigma and discrimination surrounding mental illness are still widespread in society and can be an obstacle to family members\u2019 acceptance and understanding of people with mental illness. Yet it is essential for carers to have an understanding and knowledge of their family member\u2019s illness.
\n
\nTake schizophrenia for example. It is a severe mental disorder that affects around 1 per cent of the population worldwide, with the most common age of onset being between 15 and 35. People with schizophrenia exhibit symptoms such as hallucinations, delusions, disorganised speech and a loss of motivation and interest. Pang says that if the family carer does not understand the illness, it is easy for arguments to develop and blow up.<\/p>\n

\u201cThe illness makes people have lower motivation to finish the tasks they are told to do, like cleaning themselves, taking their medicine,\u201d says Pang. When this is met with the carers\u2019 demand for compliance and obedience, disputes can erupt.<\/p>\n

Lily Chan, whose daughter has schizophrenia was once a controlling and demanding carer. Chan\u2019s daughter was in Form Four when the symptoms of the illness began to emerge \u2013 first, she refused to go to school and was expelled. Then, at home, she started to talk to herself occasionally. Chan took her to see a doctor and she was diagnosed with schizophrenia in 1993.<\/p>\n

\"Lily<\/a>
Lily Chan says her love for her daughter overcomes all<\/figcaption><\/figure>\n

But for the first seven years after the diagnosis, Chan did not fully accept the reality of her daughter\u2019s condition. Neither did she know how to communicate with her well. Whenever Chan\u2019s daughter refused to comply with her instructions, she would scold her severely and they would start quarrelling. Chan distanced herself from friends and family as she felt ashamed whenever people asked about her daughter\u2019s condition.<\/p>\n

\u201cPeople have misunderstandings about mental illness, that it is the result of evil deeds committed by the family. I didn\u2019t dare talk to anyone about it,\u201d she says.<\/p>\n

It was not until the family experienced a traumatic accident that Chan and her husband were jolted out of denial and finally learned to take the initiative in dealing with the condition.<\/p>\n

Their daughter had been occasionally refusing or reducing her medication and this triggered a re-emergence of the illness in 2000. One day, after tidying up her daughter\u2019s room, Chan told her sternly not to mess it up again. Her daughter was very angry, picked up a knife and stabbed her mother in the head.<\/p>\n

Luckily, Chan survived. \u201cLooking back, this [stabbing] is a blessing in disguise. Since then, I have learnt to seek help from the community,\u201d she says.<\/p>\n

After the incident, Chan and her husband began to seek assistance by consulting social workers and clinical psychologists. They learned to appreciate and praise their daughter, and to avoid criticisms. By taking a different perspective, she was able to understand the incident, to build trust and to find hope.<\/p>\n

\u201cShe was too angry and simply wanted to protect herself, though she didn\u2019t know how to control her emotions,\u201d she now says of her daughter\u2019s actions.
\n
\nEunice Lee Tsz-ying, a social worker from BOKSS understands Chan\u2019s initial reaction to her daughter\u2019s illness. When a person becomes mentally ill, their personality and temperament change, they seem to have \u201cchanged into another person, living in another world\u201d, as Chan puts it. This puts immense pressure on the carers as they struggle to make sense of reality.<\/p>\n

\u201cThe families say it is like they have lost a family member,\u201d Lee says. \u201cOn the one hand they have to take care of the patient; on the other, they have to bear the transition period of their \u2018loss\u2019.\u201d<\/p>\n

Lee thinks that, like Chan initially, many carers resist seeking help due to the conservative atmosphere in the community, where speaking out may trigger a sense of shame and self-blame in the Chinese context.<\/p>\n

Chien Wai-tong, a professor at the School of Nursing of the Hong Kong Polytechnic University, has been studying the role of the family in the recovery of the mentally ill for nine years. He says family intervention is important for both the initial discovery of the illness and for the recovery process.<\/p>\n

Chien says the family carer is the first and most crucial person to discover the illness and gauge the needs of the person with mental illness. This is important because early diagnosis and treatment with anti-psychotic drugs and psychotherapy increases the chance of successfully controlling the symptoms.<\/p>\n

The family plays a supportive role in the treatment and recovery and, in order to do so, Chien says family members need to learn how to control the \u201camount\u201d of emotion they display in their interactions with the mentally ill person. \u201cThe lower the \u2018expressed emotion\u2019, the lower the rate of relapse of the illness,\u201d he says.<\/p>\n

Yet, despite the central and often indispensable role that carers play in helping patients recover from mental illness, there are no official counselling services or training programmes specifically aimed at carers. Currently, they have to rely on a few non-governmental organisations like BOKSS, SOCO and Hong Kong Familylink Mental Health Advocacy Association, which provide training workshops and self-help groups for carers. Due to limited resources, these are usually small-scale operations that can only serve a limited number of people.<\/p>\n

Hong Kong lags behind countries where the treatment for mental illness is family-based; instead the government adopts a policy that relies on patients themselves to seek help. The emphasis is on medication of the patient and other factors. Family carers are considered supplementary in the recovery process.<\/p>\n

\u201cOwing to the high costs, prevention is rarely carried out. If outreach services are provided, it would help to get people on treatment sooner and lower the relapse rate,\u201d says Chien.
\n
\nIn 2010, the Social Welfare Department launched 24 Integrated Community Centres for Mental Wellness (ICCMW) to try and provide social support for people with mental illness and aid the re-integration of mentally-ill outpatients into the community. Patients\u2019 family members are included as one of the target groups of the service.<\/p>\n

However, Carmen Wong Lai-moy, a former clinical supervisor in one of the ICCMW on Hong Kong Island, says due to insufficient manpower, ICCMW\u2019s staff are overwhelmed by the number of patients they have to serve, let alone their family carers.<\/p>\n

Pang from SOCO agrees with Wong that the allocation of resources is worrying.<\/p>\n

\u201cIn one ICCMW, there are around three administration staff, eight social workers, one nurse and one psychiatric therapist. With only 24 ICCMW serving 18 districts in Hong Kong, there is an imbalanced distribution of support,\u201d says Pang.<\/p>\n

Legislator Peter Cheung Kwok-che, who represents the social welfare functional constituency, believes the government needs to revise the existing mental health medication system. He says there needs to be a more objective framework of assessment for treating patients, stating the treatment approach and giving a projection of the resources required. A timetable should then be drawn up for the allocation of resources.<\/p>\n

Cheung believes the community needs to be involved too and that those on the frontline should be setting up concern groups. \u201cTalking about community care, we should come up with a policy by public discussion, and no longer confined to the experts\u2019 level,\u201d he says. Cheung says such discussion could inspire community education which would help to eliminate stigma.<\/p>\n

The case of Lily Chan\u2019s daughter shows that with treatment and family and community support, even people with severe mental illnesses can lead full and independent lives. Her schizophrenia is under control, she has a job and is living in a halfway hostel which she chose herself. She visits her parents every weekend and the family has encouraged her to apply for public housing. It has not been easy but Lily Chan and her family are relieved their daughter is able to start a new life.<\/p>\n

\u201cA table has four legs and a car has four wheels. Likewise, medication, community support, family care and the patient himself [makes a full recovery package],\u201d says Chan.<\/p>\n

Chan says she apologised to her daughter after the stabbing incident. Together, the family learned to express their emotions properly to foster effective communication.<\/p>\n

\u201cMy daughter asked me, \u2018Mum can I come back? Are you still angry with me?\u2019 I said you are part of me and I will always love you,\u201d Chan recalls. \u201cLove eventually heals all.\u201d<\/p>\n

Edited by Stephanie Cheng<\/b><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Caring for family members with mental illness can be a lonely, difficult and stressful experience. Social stigma, a lack of social support and financial pressures add to the burden for carers and leaves them vulnerable to mental health problems themselves. Here, carers share their stories of frustration and hope.<\/p>\n","protected":false},"author":1,"featured_media":5839,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[236,1981,7],"tags":[126,237],"class_list":["post-5835","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-december-2013-hong-kongs-mental-health-woes","category-issue-130","category-periscope","tag-family","tag-mental-health"],"_links":{"self":[{"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/posts\/5835","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/comments?post=5835"}],"version-history":[{"count":5,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/posts\/5835\/revisions"}],"predecessor-version":[{"id":21398,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/posts\/5835\/revisions\/21398"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/media\/5839"}],"wp:attachment":[{"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/media?parent=5835"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/categories?post=5835"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/varsity.com.cuhk.edu.hk\/index.php\/wp-json\/wp\/v2\/tags?post=5835"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}