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Support and living well with dementia

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Topics: 
approaches to dementia care, carers, communication

Rosemary is not my carer, she is my wife, who cares for me and I’m her husband, and I care for her. 

When you’re the person who has been the main bringer of income into the family, it can be quite a knock to one’s self esteem, self confidence and self respect in many cases. Because  having dementia can become quite depressing, in fact very depressing at times, and one’s abilities to fulfill one’s own expectations as well as other people’s expectations becomes harder, especially around control, when you feel as though you’re still in control of things, when perhaps you’re not in as much control as you’d wish to be or need to be. 

When I came into this world of dementia, the demarcation lines were very clearly drawn, that I was a sufferer and Rosemary was the carer. That was the vocabulary being used at the time four or five years ago. Hopefully we have moved on from that. Rosemary is not my carer, she is my wife, who cares for me and I’m her husband, and I care for her. Now the caring roles have, by the need of what the dementia has thrown at us, have had to change slightly over the last five years but primarily, those labels are still very much the case, that I am her husband, Rosemary’s my wife, she cares for me and I care for her. That was accepted by some, but not by everyone. 

So in conversation with carer’s groups, my view has shifted slightly, but has retained that primary point, that if you start to create that image of carer and sufferer, then people will live up to those roles and will take those roles, in many ways positively and but also negatively. I’ve seen so many groups where, going back to the gender issue, it tends to be “bloke with dementia, and female is the wife or the carer or loved one” and the lady is speaking on behalf of the bloke. When you separate them into different groups, so the carers and people with dementia, then the man opens up and speaks. I’ve seen that happen so often.

An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/keith-4-nottingham-uni

 

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