Caring for my husband - Denise Maule's story

Denise, 50, cares for her husband Pete, who has Parkinson's and dementia.

She talks about how she got to breaking point as a carer.

Problems with diagnosis

"Pete has had Parkinson's for 13 years. At first he was misdiagnosed for a year with a frozen shoulder, then a brain tumour as he was thought to be too young for Parkinson's.

"Eventually he had a scan and Parkinson's was confirmed.

"Pete has dementia as well as Parkinson's, and can be quite a handful. I get very frustrated with him, which brings on a guilt I cannot get rid of.

Reaching breaking point

"I have to tell myself it is not his fault. He has difficulty walking and he has difficulty with crowds, but when I am helping him walk in the street people tut at us. I think, 'Just leave me alone'.

"Last year I actually got to breaking point. I was not sleeping. I went for a hospital appointment and somebody said to me, 'What about respite?' I had absolutely no idea how to access it.

Respite break for carers

"I was allocated a week's respite, but I spent the whole week crying because I just felt so guilty that I could not cope. Then I got a letter about 2 or 3 weeks later saying that they had decided that Pete did not need respite any more.

"I did get it reinstated, but again I did not know how to access it when it was available.

"I reached breaking point again before somebody said to me, 'You have got to do something', because it was just driving me up the wall. He is really hard work.

"The biggest problem has been lack of information. More needs to be done to let people know there are services out there, and how to access those services."

• email
• Share