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John

83, Newcastle-upon-Tyne

John cares full time for his wife Dorothy, 82, who has dementia. Initially he found it difficult, but has now found happiness caring for his wife of 59 years.

“In 2003 our daughters noticed ‘Mum’s losing her memory’ and after an operation in 2004, Dorothy became more forgetful and confused. For example, she might put her clothes on the wrong way round, or go to bed fully dressed. There were many incidents and it became clear that it wasn’t safe for her to live alone.

I had retired and was already a volunteer carer/escort at a residential care home for disabled ex-service people. It was an inspiring place to support. The residents were cheerful and it was a rewarding experience to spend time with them as they had survived such interesting times.

The book that was a Godsend

Becoming a carer for someone with mental disabilities was very different. I was floundering until I was introduced to a remarkable book called 'The Selfish Pig's Guide To Caring' by Hugh Marriott, who was, like me, a carefree, retired husband who suddenly had to cope with looking after his wife.

It describes the situation from a husband’s point of view, looking after someone he loved. It leads you through practical, physical and emotional aspects of caring, and very boldly and clearly tells you what to expect, who to approach, and how to provide care with the personal, intimate tasks, of personal hygiene. It was a lifesaver.

Now approaching our 59th wedding anniversary, and having known Dorothy since early childhood, I am quite happy to play my part in caring for Dorothy. She needs help and I wouldn’t want anybody else to look after her. My father was away at sea for most of my childhood, so I was brought up by my mother and grandmother, who ran a hotel, so I was indoctrinated into domestic routines almost from the day I was born!

The power of music

The only thing that Dorothy now responds to is music as it’s always been part of her life. Classic FM is on nearly all day as a background, and BBC iPlayer has an abundance of music of every type. She now loves Country and Western and Scottish dancing music and lights up whenever she hears it, and she always enjoys the monthly tea dance she attends.

Getting a break from caring

I do everything, from cleaning to shopping, to driving, bathing, toileting, and cooking. I wouldn’t guarantee that she knows I’m her husband, but she knows I care for her and she asks where I am if I’m not around.

"We go to their dementia café every Monday and Friday afternoons, which are two dates every week on the calendar that we can really look forward to."

The only drawback is that I don’t have time to do things when I want to do them – for example, going shopping. So I pay for a befriender to come every Thursday, when I get two hours of freedom  and have some time to myself. Occasionally I need to pop out alone for some urgent shopping, but I have cameras in the living room and kitchen, linked to my phone so I can be sure she is coming to no harm. Our daughters, who live a long way away, can also tune into it and see how she is.

Social contact

What I miss most is social contact, because when people hear the word ‘dementia’ they don’t know what to expect, unless they already have some experience of it. Luckily, there’s a wonderful local charity near me, called Silverline Memories. We go to their dementia café every Monday and Friday afternoons, which are two dates every week on the calendar that we can really look forward to. 

The volunteers are very welcoming and Dorothy enjoys going, and she recognises people there. I meet other carers to swap experiences and we have talks by specialists about many aspects of caring. It is so beneficial to chat with someone who understands what you are going through. In our group, I’m the only husband looking after a wife. Everybody else is a woman looking after a husband or a mother. Becoming involved with Silverline Memories has made a radical change to our lives.

Satisfying

What I find immensely satisfying is to see my wife smiling, then I know she is happy. When I see her empty plate, I know she has enjoyed her meal.  Of course, there are times when it is stressful, and utterly frustrating. For example, she hates having her nails cut, and having her hair washed.  In some ways it’s like having a small child. I try to insert humour into some of the less savoury aspects of caring.

I certainly don’t get depressed by the situation. I still love my wife, more than ever.  Dementia is the only downside we have encountered in our long life together, so that’s just how fate has decreed it.  Talking to some other carers with whom I’ve compared notes, my life is a piece of cake, although somewhat proscribed by decreasing physical mobility, which limits our activities.”

More information

  • Dementia and other memory problems: read about getting a dementia diagnosis, living with dementia and ways to help your loved one.
  • Respite care: find out about the different options for respite care and how to organise it either for yourself or with your relative.
  • Care services directory: use our directory to search for local support groups for people living with dementia.

Page last reviewed: December 2016
Next review due: May 2017