Healthy living
Mind matters
Personal stories: caring for dementia
Care of patients with dementia is still largely left to loved ones, with scant support available. Diana Melly, wife of jazzman George, and Carole Woodvine report on their experiences
Carole Woodvine and her mother
Carole Woodvine (53) first noticed that her mother Nancy was becoming confused about six years ago.
“We took her away on holiday and she wasn’t able to find her way back to her room and seemed a bit vague. She was referred to a consultant for an assessment. She was asked about 9/11 which had just happened, but couldn’t remember it.
“She was put on Aricept (one of the drugs recently refused by NICE) and within three months, there was a remarkable difference.”
A year later, with Nancy clearly unable to cope on her own, Carole took the decision to give up her job as a surveyor. Carole organised an astonishing 24-hour care rota, which involved nine people, including herself and her husband so that Nancy could continue to live in her own home.
This continued for four years. It meant that the couple could never go away together, as one of them always had to stay behind to assure Nancy’s care.
The strain was immense, particularly because although Nancy continued to be charming to others, she increasingly took out her frustrations on Carole, submitting her to constant verbal abuse.
Carole is sanguine. "It’s like having a child. She’s frightened and panicky, constantly asking ‘what about me’, but then she knows she’s going mad. You literally lose your brain, there’s no past, no future, you’re just existing in the here and now. It must be terrible".
Nancy broke her leg in a fall and was taken into hospital where it was clear that staff didn’t know how to deal with dementia. She’s now in residential care.
“I don’t want to see my mother end up this way. I’d rather she just dropped dead but I’m past feeling guilty about having thoughts like that. I’ve seen too many people crushed by the disease.”
Diana Melly and her husband, George Melly
Diana first met her husband, the blues and jazz singer George Melly in October 1961. He is now 80, she is 70*.
About two years ago, she noticed that he seemed a bit vague and more forgetful than usual but on some days he was fine. Then one day she arrived unexpectedly at Ronnie Scotts where he was performing. “It was quite a long time before he recognised me,” she remembers.
It prompted medical investigation which confirmed vascular dementia, "I now can’t leave him alone at home." This became apparent when a friend found him locked outside their home one day. He’d apparently become confused, thinking he needed to go to work.
"It’s like living with a different person," says Diana. "He has become quite aggressive and gets very angry, making quite unfounded accusations." The irony is that he is fine when performing, which makes it even harder for Diana.
“It maddens me when perople think that there is nothing wrong. Recently he was interviewed by the BBC at home. I went into his office and he said to me ‘Could you get the wife’”.
Their GP suggested an Admiral nurse and Diana is unstinting in her praise.
“There are days when George is maddening and you wish he was dead. The nurses provide respite and very good practical advice, but they also understand what it’s like to live with someone with dementia and when you have feelings like that they tell you that they are normal.
“When he gets worse and he looks sad and lost, it’s easier to be nice to him. Some days its awful and if feel I’ve been horrible to him then the Admiral nurse is very comforting. The terrible thing is that if you forget anything yourself, you think you’ve got it too”.
*This article was published before the sad death of George Melly.
Information on this site is for interest only and is not a substitute for professional medical advice. You should consult your own doctor about any specific health concerns.