'I was married to him but he was gone'

2, Jul, 2009

Sheila Chugg clearly remembers gradually losing her husband Leonard to the cruel effects of dementia. She watched the man she loved succumb to an illness which leaves sufferers confused and frustrated and their family devastated.

Sheila, 81, said: “You are married to them but they are gone. You look at them and there’s nothing there.”

Len passed away in 1996 after suffering a stroke. He was 84. It was in the three years leading up to his death that the dementia had really taken hold. Looking back though, Sheila believes he was showing the early signs of it in the eighties.

“He was confused for a long time and said silly things,” she said. “That got worse. I just went on and I thought it was old age as he was 16 years older than me. It got worse and worse and he said such odd things. I would see him having a conversation with himself and nodding as if he was talking to someone.”

The couple were married in 1968 and moved to Braunton shortly after. It was here they raised three children, Robert, Teresa and Andrew. Len was in the Merchant Navy in his earlier life and later worked in the Sergeant’s Mess at Chivenor, while it was still an RAF base. Sheila worked as a railway booking clerk.

Though there were those few early signs something wasn’t right, it was following a mild stroke in 1993 that Len’s condition worsened. Sheila became his full time carer. She said: “I had to do everything after that. He could not do anything. I had to bathe him, dress him and see to his toilet needs.”

One of the most tragic symptoms of dementia is the loss of memory. As a result many sufferers are unable to remember the faces of loved ones or friends. This was especially hard for Len’s family to come to terms with.

“His daughter would come and he would say why does that woman keep coming in?” Sheila said. “He forgot my name too. It was very lonely. You have to go along with what they say because in the next minute they have forgotten about it. For the last three years it was embarrassing for him. He spoke hardly any sense at all.”

Len’s real passion was his gardening. His worsening condition though, made it difficult for him to continue with it. Though he never talked about it, Sheila says the frustration he felt was clear to her. She said: “He would stand in the garden. He was so troubled, he knew he had to do something but didn’t know what. I could see this pained expression on his face where he’d be saying, what’s wrong?”

Amid the confusion and the frustration of daily life though, there was one thing Len did which still amazes Sheila when she discusses it today. She said: “When I tucked him in at night he would say ‘I love you and thank you for all you do for me’. It was the only sensible thing he said.

“I knew I did everything I could have. We had some nice times.”

Six months before Len passed away in January 1996, a notice in a shop window was to help change Sheila’s life. A notice about the Braunton and District Carer's Support Group caught her eye and so she gave them a call. She didn’t look back.

“I could talk to people going through the same thing,” she said. “I could laugh about things without hurting Len. You are not laughing at them, but you have to share it.”

Today, she’s still heavily involved, acting as Secretary and Treasurer. Many people seek such comfort from the group they stay even after they’ve stopped caring for someone.

“After Len died I did not want to leave!” Sheila said. “I spent so much time with him but I lost a lot of confidence. I couldn’t even get a bus. I think the groups are very valuable. You have got to talk to people. We do what we can to make it interesting with afternoon speeches and quizzes.”

Sheila hopes the awareness campaign being supported by the Journal will help to destroy the myths and stigmas attached to dementia.

She said: “I think people are embarrassed. I hope they will have a different idea about it. Hopefully people will stop and think, that could be me in a few years time.”