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.
Circumstances had dictated that we lived separately but very amicably since I left to work overseas in 1977. Although I retired in 1998, by that time I had bought an apartment in Richmond on Thames, but Dorothy preferred to stay in her more familiar surroundings in Newastle upon Tyne, so our separate lives continued, with frequent visits to Richmond.
In Richmond, I became a volunteer carer/escort at a residential care home for disabled ex-service people, which was a wonderful experience. Despite their physical disabilities, the residents were cheerful and it was tremendously satisfying to spend time with them because they had lived such interesting lives.
The book that was a Godsend
Becoming a carer for someone with mental disabilities was very different, especially as little information is readily available. 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 man who suddenly had to cope with looking after his wife.
It describes the situation from a man’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 an eye-opener.
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 introduced to domestic and culinary routines almost from the day I was born.
The power of music
Normal conversations are no longer possible, but the only thing that Dorothy now responds to positively is music. It’s always been part of her life and she just light up when she hears it. Consequently, Classic FM is on nearly all day as a background, and the BBC iPlayer has an abundance of music, from classical to Country and Western, all of which she loves, especially at the monthly tea dances we attend.
Getting a break from caring
"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."
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.
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, which gives us two dates that are the highlights of each week that we can look forward to with pleasure.
Dorothy enjoys going, especially to the monthly tea dances and now recognises the people there as our friends. I now 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.
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 having her hair washed. In some ways it’s like having 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. Compared to some other carers, my life has now become relatively relaxed as Dorothy has developed hypersomnia, but it is made tolerable by the support we have received from our friends at Silverline Memories.”
- 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 first published: December 2015
Next review due: July 2017