Message from the Ministry of Health, Malaysia l Message from MOS l Message from Pfizer Malaysia l Home
LEARNING ABOUT CANCER
WHAT IS MY ROLE AS A CARER?
CARERS AND THE MEDICAL TEAM
CARING FOR THE PATIENT
WHEN THE PATIENT’S HEALTH FAILS
PALLIATIVE AND ADVANCED CANCER CARE
DEALING WITH PRACTICAL & PERSONAL AFFAIRS
PRACTICAL TIPS
STORIES OF HOPE
LIST OF HOSPITALS IN MALAYSIA
SUPPORT GROUPS

 
 WHAT IS MY ROLE AS A CARER?

  A carer is anyone who looks after another person who needs extra care and attention due to physical or mental disability and in this case, due to cancer. Anyone can be a carer – a parent, child, spouse, relative or friend. The person is often not medically trained like a nurse or doctor.

Your role as a carer is focused on caring for your loved one’s daily needs. This can be any of the following:
  • Looking after the housekeeping and chores
  • Helping out with family matters (looking after children, etc)
  • Physically attending to your loved one – providing basic personal care and nursing
  • Providing moral support and companionship
It is a challenging role that will require much emotional and physical strength, patience and tolerance. You may find yourself doing things you have never done before.

You are likely to have a close relationship with the person you’re caring for which means you will feel more sensitive to the whole experience. You will have your ups and downs. Anybody in your shoes (and there are others) would.

There are no magic phrases, or approaches, which are the correct thing to say, or do. You will need to stay calm, keep a clear and level head and don’t let the stress overwhelm you. Just take it day-by-day and you’ll be able to cope with your role.

Remember, that your role is vital in helping your loved one cope with his/her difficult time. Your support and care may help them beat cancer. At the very least, you would have made their final moments, more peaceful and comforting, bringing dignity and solace in the final days.

THE ROLE OF A CARER

As a guide, the level of care required by a terminally ill cancer patient compared to someone in the first stage will differ. How well the person responds to treatment i.e. chemotherapy is another factor. His/her emotional or psychological temperament also plays a role.

Some prefer to be as independent as possible, requiring only minor assistance. Others may be in emotional turmoil and your presence may be needed at all time. In most cases, your role will fall in between these two opposite ends.

Remember, you are there for your loved one as he/she needs and wants you. Do not over impose yourself on them. They may resent the attention even though you have good intentions. Show patience, understanding and just let them know that they can rely on you when needed.

UNDERSTANDING THE SITUATION

When sizing up the situation, consider everyone’s needs including yours. In the long run, your needs must also be weighed in for a practical care arrangement. Do you want to care for your loved one or would you require additional help such as a live-in maid or a nurse? Can you share the load with family or friends?

Here are some useful questions to help you better understand the situation:
  • What type of cancer does my friend or relative have?
  • How serious is it (treatable or terminal)?
  • What kind of assistance do they need? Transport? Food? House-keeping? Personal hygiene?
  • Do I need to live with them or can I stay elsewhere and visit during the day?
  • Is the caring situation a long or short term one?
  • Does my loved one want me to help?
  • Am I able to provide the assistance required?
  • Why do I want to be a carer?
  • Will I feel that I am uncaring or disloyal if I stop later?
  • What options are available to me?
  • Who else can support me in this role?

LOOKING AFTER YOUR OWN NEEDS AS A CARER

The key areas you should be considering are your physical, mental/emotional and financial needs.

Financial
Consider how becoming a carer, either full time or part time will impact your ability to earn and be employed. Would you need to give up or change jobs?

If you plan to stay with your present company, are there flexible working options such as time off or working from home? Do you have other income streams such as your spouse or investments that can sustain you?

You do not want to add financial woes to your already challenging role.

Share with your boss and colleagues that your life will be changing. In most situations, they will be understanding and would offer assistance where possible.

Talk to a certified financial planner to see whether there are options available to you such as insurance and so on. With some creativity, and determination, you can have a career while being a carer.

Health
You need to be in good physical and mental condition to support your loved one. If you are weak or ill, caring would be a difficult task and your sickness will affect your friend’s or relative’s health as well especially since their body is weaker. Always eat a well balanced diet and get sufficient exercise. Even easy swimming, cycling or walking around the neighbourhood would be beneficial.

Besides the physical benefits, being in good physical shape will help you feel better about yourself and cope better with stress.

Managing Stress
Stress is experienced by all carers. Caring for someone going through cancer treatment can be very stressful and exhausting. It takes emotional, spiritual, and physical strength. There is a potential financial burden to care giving as well.

If you are at home looking after someone full-time, you may not have much chance to go out or spend time with friends. It may seem easier to stay in all the time, especially if the person you are caring for is very ill and needs lots of attention. Coupled with anxiety, fear and worry of seeing your dear one in such a state, it can all add up to stress.

The tell tale signs of burnout:
  • hopelessness
  • being trapped
  • emotional exhaustion
  • failure
  • detachment
  • despair
  • isolation
  • cynicism
  • frustration
  • apathy
  • powerlessness
  • irritability
This is why you need a good stress management strategy.

Here are some tips:
  • Get a relative or friend to replace you while you take time outs or have one whole day for yourself. Keep in touch with friends and your social circle.
  • Get family and friends involved where possible. Learn to say yes when help is offered, especially for simple things like shopping, cleaning or picking the kids from school and so on.
  • Find people you can talk to either friends or even a support network of former cancer patients and carers like yourself. They can share tips and ideas to better cope with your situation.
  • Hire a gardener, cleaner or maid to manage household chores.
  • Plan things that you enjoy. There are 3 types of activities that you need for yourself: Do things that involve other people, such as having lunch with a friend. Do things that give you a sense of accomplishment, like exercising or finishing a project. Do things that make you feel good or relaxed, like watching a funny movie or taking a walk.
  • Pay attention to these activities. Make an effort to notice and talk about things you do as they happen during the day. Watch the news or take time to read the morning paper. Set aside time during the day, like during a meal, when you do not talk about your loved one’s illness.

IS THERE SUPPORT FOR CARERS?

Yes, there is.

There are support groups consisting of other cancer care givers or recovered patients, from Non-Governmental Organisations (NGOs) and also from medical associations. Please refer to the end of this handbook for more support organisations in Malaysia.

Getting The Help You Need

You need to ask yourself some basic questions so you can get the help you need:
  • Is the support for myself or for my loved one?
  • Is it medical or health related assistance? Do I need more information about a type of cancer, a particular drug or treatment?
  • Is it physical assistance or just advice and/or someone to share my situation with?
  • Is it financial or legal assistance?


 

 
A Community Service Project by: Malaysian Oncological Society and Pfizer Malaysia - (latest update: 24-02-2011)