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Carers
The video below we had made in 2009, we appreciate that the language around ‘suffering’ has changed since then. However, the carer stories remain valid and helpful for other families. Below are also some stories of our BAME carers and those people who are living with dementia, who talk about how the condition has affected their lives.
“Caring for nana is not always easy. We had been told that her symptoms will worsen. I love my nani, but you should hear the obscene language she sometimes uses. My mom and dad get embarrassed if we have an relatives come around. It isn’t easy talking to relatives about nano’s dementia, nor is it easy to get mum and dad feel more at easy discussion how dementia in nani was affecting them or their relations with the wider family and friends network
I think we shouldn’t hide nani so that people can learn what dementia can do to our loved ones“
Jamila, Teacher
“My father was always a proud Pakistani… but dementia… well it robbed us of my father, his status in the wider family and in the community. His relatives could see that there was something wrong with him. Some would say he was old and therefore becoming insane, others said to have him taken to a pir as he was possessed by a jinn or something..
Abbas, CEO IT Consultant
We support him with walks, playing games, he loves his old Pakistani folk music and loves to see pictures of his beloved Pakistan. Dementia in our communities is still taboo but we will always put dad before critics in the community or relatives.”
“When we came from India, my husband and I wanted a better life for our children. They have grown up and moved away. Two years ago, my husband was diagnosed with dementia. He was becoming frustrated, argumentative and angry at times. At first, I didn’t want people to know. I didn’t know what to do or who to go to and see for help. We were scared of letting strangers into the house. Would it be safe? What will they ask? What if they see that I can’t manage on my own? Our children live in Canada and Australia, but this is our home… but now I am happy carers come to help me care for my husband and his happier too. I just wish I had asked for help sooner.”
Laxmibhen, Housewife
People living with dementia
“We all have good days and bad days. My family keep saying they are worried about my memory. Yes, I know sometimes I feel confused, but dementia…? Well who knows if it is dementia or not. Maybe I should talk to my doctor, but at 82 years of age, I feel I don’t need to trouble people.”
Yusuf, retired shopkeeper
“They said I have dementia. I had never heard of it before. I am not sure what it will mean but right now I get annoyed that my family are starting to control when I say I want to go out on my own. I don’t think I am at risk. Not sure who to talk to? Is it normal to be like this when you are old?”
Kishwar, retired school lunchtime supervisor
“People don’t understand dementia – they said I was ‘paagal’. We just got back after living for four years in India. It was nice there but I am not sure if I like it back here…My doctor said I should get checked out for dementia. They asked me questions but my English is very limited. They did a brain scan. My wife helps me manage day to day. I am thankful.”
Gurdas, retired labourer
