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Brain Tumour UK's annual conferences offer patients, family and carers an opportunity to learn from one another and talk to experts in a relaxed environment.
Carers who attended our conference in Glasgow in September 2011 shared insights and experiences during a workshop. The session was hosted by Eileen Wheeler and Jan Kerr from CLAN Cancer Support, Aberdeen.
1. Accepting that things are now different. Accepting the role of being someone’s carer may be one of the first changes you face when someone in your life is diagnosed with a brain tumour.
2. Not feeling guilty. A feeling of guilt about doing anything for you is very common among carers. But you need to look after your own needs first before you are in a position to look after someone else.
3. Dealing with negative feelings. One of the hardest things to accept is personality changes in the patient and a change in the relationship: “He is not the same man I married,” said one carer. This could cause you to feel a huge sense of isolation and disloyalty. It is important to talk openly about your feelings to someone who will not judge you.
4. Asking for help. When carers try to do it all, it can result in burnout and compassion fatigue – no-one else expects us to always get it right but we put pressure on ourselves to. Minimise compassion fatigue through:
5. Finding support and sharing experience. Find support for yourself by:
Other workshop topics at this year's conference included depression, welfare and benefits, returning to work, epilepsy, fatigue and anxiety. Here are just a few of the highlights: