Caring for someone with a disability: the impact of breast cancer
Who is a Carer?
TANIA, CARERS VICTORIA: Often carers don’t identify themselves as carers because they feel that the role they’re playing, and that’s one of a daughter, a child, a parent, a sibling, a friend, it’s that the caring is part and parcel of that role but actually what they’re doing goes above and beyond what someone else in that role would be doing.
MICHELLE, SISTER OF A BREAST CANCER SURVIVOR: I guess the role that I had was almost like a medical interpreter and that’s a role that I play for the family often
JAI, BOYFRIEND OF A BREAST CANCER SURVIVOR: After her surgery I would provide physical support in terms of showing her and then after that with her chemotherapy I would be there with her just to hold her hand while she went through everything, watch a movie and just be there and make her life feel as normal as possible.
TANIA: The challenges the carer might experience can be quite different to what they’ve been experiencing previously. So previously for example they might have been providing a lot of emotional support but now that there’s a diagnosis of breast cancer they might have to play different roles. So they might have to take the person to appointments and have a more practical hands on role, so the amount of stuff they do for the person might double.
The carer’s role is vital
TANIA: Carer’s role is very important, it’s vital because the carer knows the person with the disability and diagnosis the best and they would be the best person for the health professional, apart from the person with the diagnosis, to talk to because they understand them and know them the best so they would be able to give some insight into how they might react to the diagnosis or treatment options and other things.
MICHELLE: Any big medical diagnosis, quite often the patient can be in some degree of shock and it can be really hard to take in what can be an enormous amount of information and so to remember what questions do I need to ask the doctor, what did they tell me, what did she say that I need to remember about all of this and having somebody present I think is essential to just sort of digest the information, remember it, write notes, remember to ask the questions.
DR VISHAL BOOLELL, MEDICAL ONCOLOGIST: For everyone in general and especially for someone with a disability very much they usual have a support person in the community they have carer that needs to come with them; we encourage them to bring a carer whether it’s one whether its multiple just because it’s an emotional part of meeting the oncologist it’s very emotion driven, they will retain maybe 10% of what you say on the day. It’s good to have someone with them that can understand a bit more and that can challenge and ask more questions. We welcome that very much.
The carer’s health and wellbeing is important
JAI: I have felt overwhelmed especially earlier in the year when she was first diagnosed, going back and forward between home and the hospital every day and trying to keep a straight face when I was really stressed out, especially during her surgery.
MICHELLE: It’s really easy to feel overwhelmed with what going on because it’s something extra in addition to everything that would normal be happening in life and you can feel a lot of responsibility. For carers to just try and create, carve out some time for themselves even if it’s half an hour to have cup of tea, take a break. That’s an important thing.
TANIA: We know that carer’s wellbeing in general can be quite low because they often put the person they’re caring for ahead of themselves. When someone receives a diagnosis of breast cancer on top of their disability, the carer might feel that they have to perform even more which means that their own needs kind of slip down the line a bit which then could have a significant impact on their physical and mental health.
Information and support is available
TANIA: So some supports or resources that people can utilise is Breast Cancer Network Australia’s website or if you prefer to give them a phone call, you can call them and they have lots of information and they also have lots of other websites and agencies that they can refer you to.
MICHELLE: I think it’s important to realise that you’re only human and you’re doing the best that you can and you can ask for help. Call the nurse, call whatever support networks are available to you and just say I can’t remember this and its ok, we’re not expected to be infallible.