Derek from Wigan has written about his experience of looking after his wife who lives with dementia. Here, he shares reflections of assuming the role of ‘carer’ – while retaining his role as ‘husband’.
It soon became apparent that my wife’s life wasn’t stable and, step-by-step, albeit in a random and erratic manner, she was being stripped of her ability to communicate, her understanding of daily life, her personality, her relationships. To experience this must be appalling.
Within this context, it began to dawn on me that I actually didn’t know how to care for her. What did caring mean? What should I be trying to achieve?
I obviously knew that it would include the daily chores (not to be underestimated) which themselves presented a significant challenge before I eventually gained control. It is quite amazing what I didn’t know about the home in which I had lived for almost 60 years!
But what else? What about my wife as a person?
Fortunately, I found two articles on the ‘Unforgettable’ website (now called ‘Live Better with Dementia’), written by two carers. These appealed to me and I adopted them, reminding me that caring certainly meant helping my wife to be CALM, CONTENT and CHEERFUL. A big ask indeed, but one to which I still later added an aspirational ‘HAPPY’. ‘Calm’ and ‘Content’ may not seem much to aspire to, but to those with dementia they can be everything, even though they may just seem simple and basic. ‘Cheerful’ and ‘Happy’ may seem unobtainable, but it is worth a try. It may not seem so, but these are demanding objectives.
I wanted for my new wife what I wanted for myself, which I had experienced for the previous 56 years with my first wife. I also soon realised that my wife responded well to seeing me calm, content, cheerful and happy. Not always easy when in fact you are feeling very tired and frustrated!
With our new life objectives there were, of course, consequences.
Knowing now what I am seeking to achieve has made an enormous difference. There are now few frustrations. I know my own mind. I feel I have some degree of control, even though we are often pulled in new directions. I am now focused, allowing all my actions to be viewed against my objectives, so I can quickly see my part in any problem.
I do believe, as one of the articles intimated, that sometimes, quite unintentionally, we the Carers can be part of a problem and on occasions we might even actually create the problem.
Defining my caring role in this way was a big advance for me. I realise it may not always work. I am aware that change will always face us. For now I feel I am in a good place with my caring and within my own head. My objectives guide me. I hope they will continue to do.
But what of my wife? What does she feel?
Well, the truth is I don’t really know. She is clearly aware of her situation and who would feel good carrying her load? Largely I can only interpret her feelings. She is invariably calm; mostly appears content; can be cheerful; happiness – hard to judge or even define, but there are some signs on occasions.