Supporting our Carers

Today I attended the Menzies “Supporting Our Carers” Roundtable survey. It was a good chat about what our Carers need and what we looked for in a carer and what we expected and hoped for from them.

Some of us had one carer or we had a variety of carers from our families. One group was people like myself who have had or have cancer

My daughter was in another group to talk about being a carer. She gave an insight into being a kid who had to grow up quick to be able to take care of mum. She still is caring for mum as she is my eyes when we go out. I have some issues with vision and she is my guide and tells me what I can’t see.

The group talked about how we found that it was immediate family who fell into the carer role, because they had no other choice. There were some differences in how much to tell the carer. We don’t want to worry our family so it’s often a need to know basis, especially if its a parent or children who is the main carer. We try to stand strong so we are not a burden on the carer. This can at times help us get through, but other times, it doesn’t allow us to let someone else carry the load.

When dealing with cancer the carer should be able to distance themselves to be able to talk to the doctors if the patient unable, this is something that we find is difficult when we are using family as carers, we don’t want them to be in a situation that will cause them stressThe simple questions opened up to lots of discussions about how we accept help from family. Some of the group had not been told by hospital what help they were eligible for, this is a common problem. We don’t know the questions to ask and nobody tells us. If your carer is white or has lighter skin they will be told more and helped more than if they are not.It can be hard on the carer when they find out that they are needed long after the initial diagnosis and treatment. The effects of cancer can linger for years, also the treatment can leave the body in a bad state that takes months or years to recover from.

We looked at a brochure and discussed how this could help with patients to give information on their journey through the health system. Cancer is a scary ride and no one really tells the full story of it. Most spoke of the hidden costs of cancer and how their is now warning of this and how this can cause as much stress as the diagnosis. Treatments can have a damaging effect on the body.

Being involved with studies like this are easy and they help with our mob in the long run.