700,000 families in the UK care for people living with dementia. 40% of them look after the person they care for 24/7.
Every Tuesday, Marianne, wife of James who has been living with dementia for over 6 years arranges and leads a support group made up of people like herself, someone she describes as working full time on her own i.e. 24 hours a day, 7 days a week for the foreseeable future without any holidays, respite or much support. Yet, she also says this is not the worst of it. Marianne talks openly about the absolute loneliness and desolation that is a constant companion as she battles to support her husband, the person she didn’t marry, rather a stranger that she does not recognise but can’t walk away from. Even though Marianne has a supportive wider family and friends she says nothing can make up for the melancholy and grief she feels e.g. at 2am when her husband is getting dressed for work. He retired 20 years ago but he doesn’t remember that. She says she feels totally alone and not sure how she can go on and then feels guilty for thinking like this.
The Tuesday group is the one thing she looks forward to every week as it not only offers a space for herself but a chance to find out that her experience is not unique to just her. The partners living with dementia are supported in another group setting here at Ashford Place while the carers share their thoughts, concerns and wishes. Clearly, it is difficult to fully understand the desperation and desolation of being a carer if you are not one yourself. However conversations like the one above does remind us here at Ashford Place that we must continue to support carers as much as we can and to find ways to connect more effectively with them so that they can find the strength to carry on and find support systems to help them support the person living with dementia to live as well as possible. We are delighted to be working with https://brentcarerscentre.org.uk/