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Beginning the carer journey

Though the cancer journey for a patient begins with a diagnosis, the journey for a carer can begin much earlier than that.  

Blood Cancer Support Team Leader Maryanne Skarparis introduces the first lesson of Caring for the Carer – Beginning the Carer Journey. In this lesson you will hear about the different kinds of life changes a new carer can expect, as well as how your values can play an important role. 

You will also have the opportunity to partake in an interactive exercise to help determine what your values are and how they can influence your role as a carer. 

Belinda Barrie shares her experience of a blood cancer diagnosis and treatment from the carer perspective, talking about the emotions of a diagnosis, the impact on a carer and the frustrations she has experienced.

To begin this lesson, click on the first topic – Life Changes – below. 

Burnout

Being a carer for a person living with a blood cancer isn’t always an easy job, and it’s okay not to be okay. You may find yourself juggling your role as a carer with other roles, feeling stressed and overwhelmed, and experiencing strong emotions, many of which can get bottled up and repressed. Here we learn how to recognise and deal with these emotions and stressors, identify the signs of burnout and become a more stable and well-rounded carer.  

Blood Cancer Support Team Leader Maryanne Skarparis introduces the second lesson of the Caring for the Carer course where you will learn about burnout, the signs to look out for, how to self-reflect and recognise your stressors and, most importantly, how to manage them.  

Belinda Barrie continues to share her experience as a carer and talks about the emotions and stresses she has experienced, how she manages these and what she has learned along the way.

To begin this lesson, click on the first topic – Overflowing – below. 

Communication

Effective, honest and open communication is the key to successfully managing any role or relationship, and being a carer is no different. Understanding how to have difficult conversations, talk openly about how you are feeling and make your voice heard is important to your wellbeing, and the wellbeing of the person you care for.

Blood Cancer Support Team Leader Maryanne Skarparis introduces the third lesson of the Caring for the Carer course – Communication – which focuses on how you interact with the person you are caring for, as well as family, friends and medical staff. 

We also look at the holistic environment in which communication takes place, as well as the relationship dynamics that can influence how communication can be obstructed and skewed.  

Finally, Belinda Barrie talks about some of the communication challenges she has faced as a carer, how she dealt with these and the importance of getting the right information at the right time.

To begin this lesson, click on the first topic – Talking Effectively – below. 

Legal and finance

Managing finances and documents may seem like the last thing on your mind as a carer, but unfortunately it has to be done and can be the source of the greatest stressors for carers. 

If you have taken on the role of being a carer for a person living with a blood cancer, it will often mean that you become an advocate for that person and may have to make financial and medical decisions on their behalf. 

In this fourth lesson of the Caring for the Carer course, Blood Cancer Support Coordinator Brenda Kirkwood walks us through some of the legal and financial issues that can arise for carers, as well as advising some services that can help you and the person you care for.  

Belinda Barrie shares some of the financial and legal challenges she faced as a carer, the emotional stress this caused, and where she was able to find help and support.

To begin this lesson, click on the first topic – Rights and Support as a Carer – below. 

Moving Forward

One of the hardest things about being a carer is that the role constantly changes. As the needs of person you are caring for change, you may find that as they gain strength, they need or want to be more autonomous and embrace their new ‘norm’.  Or they may move into a palliative care facility and the carer role is taken on by staff. Or your carer role may end with their passing.

Many carers struggle to ‘let go’ of their role and struggle with feeling ‘lost’ or ‘not needed’.  Shifting your focus back to ‘self’ and reclaiming things that you enjoy, can take time. 

In this final lesson of the Caring for the Carer course, Blood Cancer Support Team Leader Maryanne Skarparis discusses the sometimes-difficult process of moving forward after being a carer for a person with a blood cancer. 

Belinda Barrie reflects on how being a carer has changed her relationships with her husband, friends and family and how she has adjusted to these changes and what she has learnt from the experience.

To begin this lesson, click on the first topic – Life After Your Carer Role – below.  

Course Introduction

In this course, you will be introduced to information, tools and supports that will help in your day-to-day life as a carer, including emotional support, stress management and practical tips to get you through. 

Guiding you through the course is Maryanne Skarparis – one of the Leukaemia Foundation’s most experienced Blood Cancer Support Coordinators. 

Just as everyone’s cancer journey is different, no two carer stories are the same. Throughout this course you will also hear a first-hand experience about caring for someone with a blood cancer. Belinda Barrie details her journey as a carer, including the obstacles she faced and how she overcame them.