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Caring for the Carer

Caring for the Carer

Siobhan Hoy and her mum Sally
Siobhan Hoy and her mum Sally

 

 

Being a carer for a loved one who has a blood cancer can be in turn rewarding, stressful, overwhelming and isolating. 

Across Australia, more than two million people regularly care for a spouse, partner, brother, sister, parent, friend, child, or someone like you. Their care and support vary, from a couple of hours a day or week, to around the clock.

To meet the needs of those in this important role, the Leukaemia Foundation has developed an e-learning course, Caring for the Carer. It has been designed and written by our Blood Cancer Support Coordinators especially for carers of people living with a blood cancer.

Not only will completing this online course help carers to recognise and support their emotional and practical needs, it also provides access to all the services, support and guidance that is available to them.

The course has six short lessons which can be completed at one’s own pace and covers the carer journey, burnout, communication, legal and financial issues, and moving forward.

Each lesson includes videos on related topics, a quiz or reflection activity, a carer’s personal story, a list of related links, and a list of other content to explore the topic further.

People who complete this course will better understand the role of being a carer and its potential effect on their lives. They are taught to identify the early signs of stress, strain and burnout and are provided with strategies for managing and coping with stress and strain.

They will understand their legal and financial rights, know-how and where to go to access services and support, and will recognise that they are not alone.

Our Caring for the Carer course is free. Enrol online now here.

Caring for my 40-year-old son with blood cancer

Caring for my 40-year-old son with blood cancer

Lynn and her son Darrin
Lynn and her sone Darrin

Lynn Simpson is now the carer for her son, Darrin, after his shock blood cancer diagnosis. It’s a role hundreds of parents take on each year as leukaemia remains Australia’s most common childhood cancer.

But Lynn can offer a unique perspective on blood cancer most carers don’t experience: Darrin is 40 years old and intellectually disabled.

Lynn knew one of her biggest challenges was working with healthcare staff to tailor Darrin’s induction to a haematology ward so he was introduced to the new environment and routine in a nurturing and gentle way.

“During and after appointments, I had to re-explain to Darrin a lot of what the doctors had said,” she explained.

“To help him understand what was going on I fed him the information in smaller doses, using smaller words.

“I told him that his blood wasn’t working properly so he had to have chemo to kill off the bad bugs in his system,” she said.

“When the transplant came around, I told him that the chemo didn’t work so we have to get something from someone else’s body to help make some good bugs.”

Lynn says that throughout their experience, Darrin has amazed everyone with his delightful and positive attitude – and thinks ultimately that has helped him handle his treatment and side-effects so well.

“He endeared himself to everyone at the hospital and tolerated treatment really well.

“It’s hard to sometimes keep those feelings locked up and to try to be positive for him.

“But now that he’s gone through it, and he’s looking good, I’m doing fine. We know he will make it through.”

Carer tips
Lynn has shared five tips she found helpful for her and Darrin.

Be honest
If they ask hard questions, answer them – by being honest, it can take away some of the fear. It will be hard for you to talk about things like death, but you need to have that conversation. You can’t hide things; the fear will build as they know you’re being secretive. Darrin also needed to understand what was happening as some of the treatments were going to make him feel sick.

Be positive where appropriate
Darrin feeds off me so I try to show a positive and strong front for him. However, I also make sure to always address any concerns he has.

Find a talking point
Darrin loves the Broncos, so hospital staff would often talk to him about the team when they first met him. It was a great starting point to make Darrin feel comfortable.

Use clear language
I broke it down into parts. Part 1 was chemo. Part 2 was the transplant. Part 3 was coming home and us building him up and getting fit and healthy again. Part 4 would be him going back to his house. By breaking it down into little small steps, he understood it a lot better.

Don’t change how you act
Everyone in our family has still acted normal. No one has stopped treating him the same way – his brother still riles him up!

The Leukaemia Foundation offers a variety of support services for carers, including counselling and informal support groups. Contact us on 1800 620 420 or email info@leukaemia.org.au for more information.