Caring For The Carer

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LIVING with a sick relative, especially one who has psychiatric problems, is not easy. Not when time, care and funds needs to be allocated to provide for their emotional and medical needs.  

Although the difficulties are real, never let it interfere with your happiness and career. You will need someone to talk to, someone who understands, and someone who will take over your responsibilities. Look around for support groups. 

Assumptions

If we look closely, most families of the mentally ill still feel ashamed and stigmatised. However, their suffering is not due to having to treat the patient, but due to the community assumption that mental illness is caused by black magic. Some even think that these are retributions of for families’ bad actions in the past. Faced with such a crowd, families are often left with no choice but to remain silent. 

Families of the mentally ill need support and guidance in many ways, including support in identifying the disease early and seeking treatment for the mentally ill.It is also important for them to be patient in making sure that the mentally ill continue their medication, he noted. 

Support can also come in the form of support groups where families come together and discuss the problems they may encounter in managing their mentally ill relatives. 

When families come together, they will gain support from each other, as they themselves understand better the challenges they face, explained Prof Mohammad Hussain Habil, President of the Malaysian Psychiatric Association.  

When a member of *Hana’s (not real name) family was diagnosed with mental illness, she had her share of denial, anger and guilt; but her strength and faith in God has led her to accept and treasure her life; choosing not to view her family member’s illness negatively, but as a blessing in disguise. 

Some families feel shy and ashamed that their family member is mentally ill; some may even feel guilty. But it is OK to feel that way. Everyone has to grieve. But do get out of the denial stage fast! Because the quicker we get out of denial, the quicker we take action – to heal ourselves and our sick relatives. 

While living with family members that are mentally ill may be traumatic to some, Hana has not only proven by personal experience that these difficulties could be overcome, she now teaches other family members how to deal with those difficulties as well. 

A family support group helps. When you meet other family members, you realise that it is not that bad as you are not the only person facing this problem. 

For Poh Kim Pheng, family support groups couldn’t be closer to her heart. After bringing up two children who are affected by mental illness, she is now the Honorary Secretary-General of the Malaysian Mental Health Association (MMHA) based in Petaling Jaya. 

Now, Poh volunteers at various workshops and education programmes to help other family members deal with the challenges of living with loved ones who have mental illness. 

Family support groups encourage open discussion among family members about mental illnesses. It is good for family members to understand the symptoms of mental illnesses, what is happening to their family members, and why they act the way they do. 

 Support network 

For consultant psychiatrist Dr Abdul Kadir Abu Bakar, family support groups are not just places to discuss problems. It is a forum to get together, learn new things, share problems, plan activities and raise funds. 

As one of the founders of MINDA Malaysia (Movement for the Incorporation of New Development & Actions in Mental Health), an umbrella body formed in 2006 by family support groups all over Malaysia, Dr Abdul Kadir hopes that by coming together, MINDA can help educate other families, volunteers, and the public about mental illness. 

MINDA Malaysia train all families of the mentally ill, but for the time being, it  include discussions on schizophrenia, bipolar disorder and depression. 

Dr. Kadir’s survey five years ago showed that apart from wanting to know about mental illness and the treatments, family members of the mentally ill want long-term care for their loved ones. 

More importantly, they want their mentally ill relative to be able to carry on after they can no longer care for them. 

Families remain the main caregivers in all countries. The families’ main concern is to make sure that the patients continue to receive care when the families have gone. They want to focus on work opportunities and housing for the mentally ill. 

MINDA Malaysia is aimed at bringing families of the mentally ill together in Malaysia. It wants to promote better mental health systems and better care: a service that promotes delivery and combat discrimination. 

It also want to create a healthy environment for the mentally ill in Malaysia and educate families in the Family Link Education Programme (FLP), to have adequate and appropriate housing for the mentally ill, advocate for their rights and to promote evidence based rehabilitation. 

Dr Kadir said, currently, there are at least one family support group per state in Malaysia. The local family support groups meet monthly and they are also contact each other regularly by phone. 

The Family Link Education Programme contains eight modules of training to help family members of the mentally ill deal with the challenges in mental illnesses. 

Taught mostly by family members of the mentally ill, the modules of training include understanding the mentally ill and mental illness, medications, brain biology, self-care for carers, communication skills, problem solving skills, recovery, rehabilitation and advocacy for the mentally ill. 

Apart from providing support to members of the group, family support groups should also extend their knowledge about mental illness to the community to eradicate stigma and discrimination, Prof Hussain added. 

 

Mutual support 

There is nothing like having a shoulder to cry on in times of trouble. Hana cites an example of other family members taking over the care of one’s sick relative for short periods of time while one is away.  

Having a family member as a teacher in the Family Link Education Programme enables him/her to have more empathy and understanding in explaining the issues involved, said Hana, who now teaches some of the modules in the programme to other family members. 

Somehow, having experience makes what you are teaching more real. You can really tell people that this is what you have experienced, and this is how you handle it. 

However, as each individual will have different experiences, Hana draws from her own experiences to provide real life advice to family members. For her, dealing with her relative’s sickness not only gave her family strength, it caused her to mature and know how to handle crises in life.  

Balancing needs 

In the process of giving care, families must sometimes remind themselves that they indeed have lives of their own and need to lead them as normally as possible. 

Although attending to the needs of an ill relative is very important, self-care is very important for families with mentally ill members. Family members have to understand that taking care of an ill relative is a shared responsibility. On the other hand, one should not neglect other family members who are not ill. 

Most importantly, family members should take time off now and then to heal themselves. You may need to meet with other friends, do whatever you need to do, and enjoy your life. If it is going to happen for a long time, you must take care of yourself to keep on going. 

For family members, the ultimate joy would be to see their loved ones overcome their mental illness, working and live a life like anybody else.  There is hope no matter how long your loved ones have been suffering from the illness. Do not give up. 

 

  To find out more about family support groups in your area, MINDA Malaysia, and the Family Link Education Programme, visit the Malaysian Mental Health Association (MMHA) website: www.mentalhealth.org.my, or the Malaysian Psychiatric Association website: www.psychiatry-malaysia.org.