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John

83, Newcastle-upon-Tyne

John cares full time for his wife Dorothy, 82, who has Alzheimer's.

“My wife and I have known each other for over 80 years, since childhood in fact, and will soon celebrate our 60th wedding anniversary.

In 2003 our daughters noticed ‘Mum’s losing her memory’ and were concerned that something was happening to her. After surgery 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 aspects of concern, so much so that it became evident that she needed somebody with her all the time.

Getting a break from caring

I'm her sole carer and now 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 becomes unsettled if I’m not around.

The primary 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 carer to come every Thursday to give me two hours respite when I have some time to myself. More significantly, it gives Dorothy an opportunity to socialise with and enjoy the only female companionship she ever encounters. When necessary, I do quickly go to the local shops, or the GP, but I have live cameras in the living room and kitchen linked to my mobile phone, so I can check her safety while I'm briefly away. My daughters can also log into them and see how she is.

Social contact

When people hear the word 'dementia' they don't know what to expect or how to react, unless they have had some personal experience. As a consequence, little help is offered from neighbours, making it a very lonely, isolated life. Luckily, there’s a wonderful local charity called Silverline Memories. We now attend their dementia cafés every Monday and Friday, where we receive a warm friendly welcome. These two dates are the highlights of each week and we can look forward to them.

Dorothy enjoys going, especially to the monthly tea dances and now recognises the people there as our friends. I meet other carers and benefit from talks about all aspects of caring, health and personal wellbeing. It's a relief to have an opportunity to chat with someone who understands the caring experience and what that entails. In our group, I’m the only husband caring for a wife. Everybody else is a wife or daughter looking after her husband or mother. These meetings have transformed our lives beyond any expectations.

"We now attend their dementia cafés every Monday and Friday, where we receive a warm friendly welcome. These two dates are the highlights of each week and we can look forward to them."

The power of music

Normal conversations are no longer possible, the only thing that Dorothy now responds to positively is music. It’s always been part of her life and she just lights up when she hears it. Consequently, Classic FM is on nearly all day in the background, and the BBC iPlayer has an abundance of music, from classical to Country and Western, all of which she loves.

Adapting

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. What I find immensely satisfying is to see my wife smiling, then I know she is happy. Of course there are times when it is stressful; she hates having her nails cut, and dislikes having her hair washed.  In some ways it’s like being around a very small child. I don't get depressed by it, only frustrated, but that's how my life has turned out to be, so I have adapted accordingly. The situation is made tolerable by the support we have received from our friends at Silverline Memories.”

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: July 2017
Next review due: January 2020