Being a carer
The incredible people who have taken on the role of a carer for someone living with a blood cancer aren’t just wives, husbands, parents or children – they are siblings, friends, cousins and neighbours. For some, they may become a carer suddenly, for others it may be a gradual process. But for everyone who acts as a carer, it means a big change in your life.
What is a carer?
At its core, the role of a carer is to improve the quality of life by providing support and assistance for someone who is unwell or unable to support themselves. This can take many forms, from cooking and cleaning, to helping get to and from appointments, to being an exercise companion. It can also mean taking an active role in medical matters, such as monitoring medications and side effects, changing dressings and helping navigate the health system and advocate for the person living with blood cancer. A carer may even need to help with legal and financial matters.
The role of the carer can vary according to the individual needs of the person living with blood cancer and the amount and type of assistance the carer is able to provide. It may also change over time.
Stages of being a carer
Regardless of whether you find yourself suddenly acting as a carer or it is a gradual process, the role of a carer can often be identified in six stages:
Learning of a problem
Whether you are a family member or friend, you may notice something is not right with the person who is in need of help – whether they are showing signs of illness or they have told you something is suspect.
At this stage, your suspicions or concerns are affirmed by a diagnosis. More often than not, this comes as a shock to both the person with the blood cancer and yourself and things can start to move very quickly.
After the initial shock of a diagnosis, plans are put in motion for treatment or an adjustment in lifestyle. During this period, the carer may begin to alter their routine to be able to take care of the person who is ill.
Once you have a better understanding of the illness and the role you will play as a carer, you will begin to figure out how to incorporate caring into your everyday life and how to achieve a work-life-care balance.
Now that you have mastered your time management, navigated the health system and understand the disease, you now operate at full-capacity and make a more proactive and purposeful impact as a carer.
End of role
Whether the person you have cared for has made a recovery, has died or someone else is taking over as carer, your role as a carer comes to an end. Though your role has ended, the impact you have made is everlasting on the patient’s life, as well as yours.
Support and advice
Caring can be both rewarding and hard – often at the same time – but you are not alone. There are a range of support services available to help you. These include financial support, practical support, social support and general advice to help you adjust to your role as a carer and make life easier – not just for you, but the person you are caring for as well.
You may also want to look at our comprehensive list of carer resources.
Looking after yourself
Caring for someone with a blood cancer can be a round-the-clock job which can be physically and emotionally exhausting. Whatever your situation might be, it is just as important to take care of yourself as it is the person you are caring for. Be aware of how you are feeling and coping and watch out for signs that your are struggling. These can include:
- Lack of sleep, being tired, lethargic
- Headaches, muscle tension, increased heart rate
- Weight loss or gain
- Depression, anxiety, feeling of hopelessness
- Misuse of alcohol or drugs, gambling
If you have experience any of these since you have taken on the role as a carer and are concerned about your health, speak to your GP who can refer you to any number of support services.
The best way to combat stress is to get ahead of it early and take proactive steps to help you manage stress.
Know what situations cause you stress or anxiety. You may not be able to avoid them, but being aware is half the battle and can help you find solutions. You can also manage your stress by making minor changes to your routine, so you can either be more organised or avoid the stressful situations you have identified. Ask for help – you are not alone. And remember to take time out and do things that you enjoy.
Last updated on November 13th, 2019
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.