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Dementia: finding your way through the maze

Beth BrittonĀ is a freelance feature writer, blogger and dementia campaigner. Beth's father had vascular dementia for the last 19 years of his life. With her experience, she aims to provide support and advice to those faced in similar situations.

Here Beth talks about balancing your life with the needs of those you care for.

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Beth Britton

the financial minefield of caring

User AvatarPosted by Beth Britton at 31/08/2012 11:10:49

When most people think about family carers, very rarely do they stop to consider how that person supports themselves as they care for their loved one. Many people become carers when they are generally able, possibly still of working age, and with their own life of financial responsibilities acquired long before a caring role was ever envisaged.

Adjusting financially to this life-changing commitment, which often comes without any defined time-frame attached to it, is key to having peace of mind, yet finding out what you are entitled to, is a minefield for many carers. You can end up making endless phone calls, or seeking help from organisations like the Citizens Advice Bureau and carers’ charities, and whilst the internet offers possibly the most comprehensive resources for carers, many have no internet access at home, and due to their caring role are unable to visit public computers, leaving them dependant on friends or family for vital information.

The situation can be even more problematic if, for example, the person needing care was once in-charge of dealing with all the household finances. It can plunge the carer into a whole new world of bills and budgeting, claim forms and requirements for precise financial details that they have little concept of. Form filling can be time-consuming, confusing, and an exercise in data collection, as you hunt around your home for pieces of paperwork that provide the answers to the questions being posed. 

Another big obstacle for those taking on a caring role, can be the pride that they have always felt in earning, rather than claiming money. Despite clear entitlement to benefits, the stigma attached to claiming them, and the concern many people have that they do not want to be seen as ‘taking’ money from the government, can see them hold back from seeking the money that they need to survive whilst caring.

Like so many aspects of being a carer, issues around finances often result in a fight for what you need. Advice is rarely volunteered, and the time and energy it takes to work your way through the complexities of the benefits system is time you would rather spend caring for your loved one. Many people are left snatching moments to complete things, burning the midnight oil even though they are mentally and physically exhausted, and wondering why the benefits system cannot be simplified and carers given a clearer explanation of their rights.

Anyone living in the day-to-day reality of being a carer will know that it is a huge sacrifice of your own life in so many ways. What that sacrifice should never mean, however, is that you are living in poverty or, should your caring role ever end, left with a mountain of debt that will affect you forever. The contribution you make to the life of your loved one and society as a whole is priceless, and worth so much more than the hardship so many carers endure.

You can also read my previous blog on why every carer deserves a break.

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