Adjusting to being a carer
Being a carer can be a hard job at times – it can be physically exhausting, mentally taxing and emotionally draining. Don’t ignore these feelings and don’t try to go it alone. It is just as important to take care of yourself as it is the person you are caring for.
Adjusting to being a carer
Taking on the role of a carer for someone living with a blood cancer will introduce a lot of changes into your life. Just as every cancer journey is unique, so is every carer journey. These are some of the most common changes you may experience:
Lifestyle: Whether you are a full-time carer or simply helping when required, caring will likely leave you with less time for your social life, hobbies and pastimes. You may find that the impact on your lifestyle changes depending on the health of the person you are caring for, their treatment regime or your capacity to give care.
Relationships: If the person you are caring for is your spouse, you are more than likely to already have a strong relationship. Your new role as a carer however may change the dynamic of your relationship as the person with the blood cancer becomes more dependent on you. Similarly, if the person you are caring for is a loved one such as a parent, sibling or friend, as you take on more responsibilities the dynamic of your relationship may change. It’s important to acknowledge these changes and talk through them to find ways to manage any impacts they may have on your relationship. You may also want to consider counselling to help you adjust to becoming a carer.
Emotional: Being a carer can give rise to many emotions – many of which you may not have anticipated. Many carers experience guilt, anxiety, stress and anger towards the person they are caring for. If you feel any of these, it’s important to know that in no way does that mean you are failing as a carer. They are perfectly normal and understandable emotions. Discussing these emotions with a family member, friends, mental health professional or other carers can help give you the tools to work through these feelings.
Work: Depending on the amount of time you need to dedicate to your new life as a carer, your career may need to take a backseat for a while. If you are a permanent and full-time employee, you may be able to negotiate a leave of absence or flexible working arrangements. If you run your own business or are a casual employee, you may need to speak to a financial advisor to plan how you are going to cope financially. Again, it’s important to acknowledge how you feel about these changes and work out any plans to manage these feelings.
Financial: Whether you are taking time off work or not, being a carer can be very expensive as new costs (such as equipment, medications and medical bills) tip the scales on your budget. There are government services available that may be able to supplement a portion of your income to get you by.
Talking to friends and family
Caring for a loved one can stir emotions of resentment, anger and distress. It’s not easy to have these feelings about a loved one and even harder to share them, especially with other family members who may struggle to understand your feelings.
But suffering in silence isn’t the answer either. There are many things you can do to preserve family relationships while acting as a carer:
Regular catch-ups: Set up regular times for family and friends to visit or meet. Make sure these also include catch-ups without the person you are caring for.
Family meetings: Have a meeting for everyone to express their feelings and concerns and discuss the issues without judgement in an inclusive environment.
Personal time: Don’t be afraid to take time for yourself and do things that you want to do..
Respite: Organising respite care can provide you with much-needed time to rejuvenate your batteries and focus on yourself. Ask friends and family for help or look into respite agencies who can provide care.
Relationship counselling: Having a professional act as a mediator – whether they be a counsellor, social worker or psychologist – can help ease tensions and guide discussions effectively.
For more information about family support services, visit Family Relationships Online.
According to Carers Australia, carers are 40% more likely to suffer from a chronic condition such as depression or anxiety related to their duties as a carer.
There are many resources available for carers to help cope with the emotional toll of being a carer, many of which are tailored specifically for carers, including the National Carer Counselling Program. There are many other services such as Lifeline or BeyondBlue.
If you are a spouse taking care of your partner and have found your relationship has been strained due to the change in dynamic of your relationship, Relationships Australia can offer guidance and support. Their Human+Kind website offers a range of information and support for people living with a chronic illness and their loved one.
If you feel you need ongoing support, ask your GP for a referral to see a psychologist.
Taking a break and respite care
Taking a break from being a carer is often referred to as ‘respite’. This can mean anything from taking a couple of hours off to see a movie and unwind or going on holiday for weeks at a time.
There are different types of respite services available to you and the person you care for:
In-home respite: This is where you can organise for a care worker to come to your home and either tend to the person in need of care for a period of time, or the care worker can assist the person in need by taking them out for an activity.
Centre-based respite: There are many groups and communities where the person in need of care can attend activities or social gatherings with other people in similar situations.
Community access respite: Some organisations can organise activities for the person in need of care to achieve a sense of independence as well as social interaction.
Residential respite care: If you are away or unable to provide care, there are residential care homes who can house your loved one for prolonged periods of time and offer excellent care.
If you would like to take a break and are interested in respite care, speak to Commonwealth Respite and Carelink Centres to discuss what your best option would be.
If you decide to take a break from your role as a carer, you may still be eligible for the Carers Allowance offered by Centrelink, which allows 63 days of respite care without their payments being affected.
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.