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Finding the support to be a carer

Linda Elliott found her life transformed when husband Jim was diagnosed with leukaemia and corticobasal degeneration and she became a full time carer.

Corticobasal degeneration is a rare condition that can cause gradually worsening problems with movement, speech, memory and swallowing.

Unable to leave Jim for a minute, Linda herself began to develop worrying symptoms like trembling hands and voice and weight loss.

And even now he is in 24 hour professional care, the strain of providing support continues.

“It is an emotional drain and even though I try to hold it together when I am with him, I do even now find I have to leave the room and cry where he can’t see me,” Linda admits.

“Jim is a proud man and he struggles with the condition and its impact on his dignity and he has experienced anger, anxiety and depression, which is very difficult to cope with.

“While he was still at home he didn’t sleep much and would spend large parts of the night walking around, so I would be up most of the night with him.

"Then there were problems with getting him to stay in the car and if we had a GP or hospital appointment he would walk off and refuse to come back, which was very stressful.”

Linda did have support from her daughters, who would come and sit with Jim for three hours in an evening simply to give Linda a chance for some rest.

“Even then I found it hard to switch off and Jim would also come to find me and disrupt my sleep,” Linda says.

“Eventually he deteriorated to the point where he requires 24 hour care and help with every aspect of his life, which I simply couldn’t do.

“Now I visit Jim twice a week and my daughters also go so he has somebody with him every other day.

“I do feel guilty for not visiting more often and I certainly don’t feel I can book a holiday because I still feel I need to be with Jim every week.

“I know I couldn’t have got through this without my daughters and I really can’t imagine how people cope if they are on their own and have nobody to fight their corner because being a carer really isn’t easy.”