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Hello - Carers UK Forum

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Hi,I care for my Husband who has a brain tumour.I also work full time and care for the rest of the family.

My Husband was diagnosed with the tumour in 1983 it was operated on with a degree of success,some of the tumour remains and a hydrocephalus shunt was introduced. Due to the time that this has been in there are some serious problems with it now. The shunt itself works sporadically and has become fully audiable when it does work. The tube that goes form the shunt to a body cavity has disintegrated and blocks causing a back up of CSF which causes a great deal of pain and this has resulted in A&E visits. Unfortunately because his condition is rare we dont have answers...because even the Neuro team cant answer what they dont know. The adult social team also dont know how to help us,and on my last Carers interview the poor young lady just didnt know what to say. It has made us very dependent on each other for everything, we have discovered that over the last 5 years we have isolated ourselves because we feel that because my Hubbys condition is so rare that no one understands...apart from us.

We have a fantastic relationship and dont regret reliance on each other,however when a friend of ours said " what happens when it stops working ?" we just looked at each other and didnt know how to deal with the very real possibility of not been together. As much as we deal with the difficulties daily we just do get on and dont think about what might be next.
Hi and welcome to the forum. Plenty of support and advice to be found here and lots of friendly people to chat to.
Hi and welcome Image
Hello and welcome Image
Hello there - welcome to the Forum. It seems as if you have a lot to deal with - personally I think you've found the way of going from day to day the best way to cope? ((((((hugs for you both)))) x
Hello and welcome to the forum Image