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Struggling to care: Fred's story

Fred cares for his wife, Ruth, who is living with dementia and arthritis. Fred and Ruth met at university. They married and moved near a government facility where Fred worked his entire career. Fred retired in his mid-fifties, followed shortly by Ruth, but it soon became clear that something wasn’t right with Ruth. She was beginning to forget things. Eventually she was diagnosed with mild cognitive impairment. Ruth also struggles with pain as a result of arthritis. Over time Fred has become her full-time carer.

Fred’s story highlights the problems carers face in accessing appropriate services to support them in their role. While the local authority has deemed Fred entitled to support, he has struggled to find respite care that is high quality, affordable and suited to his wife’s needs. Instead, he has relied on help from the local community. More recently he has been connected with a local Shared Lives scheme, which he hopes will finally offer him a chance for real respite.

Fred describes himself as ‘not a natural’ carer, but explains that he moved into the role gradually as his wife’s memory problems progressed.  

“We started noticing that she was having some memory problems. It starts off as a sort of a bit of joke, you know, ‘you never listen to me do you?’ Then it starts to become an irritation, and then it starts to become a problem.”

Fred and Ruth sought help at a local memory clinic, where Ruth was diagnosed with a mild cognitive impairment (MCI). The news was devastating, putting an end to plans for a retirement road trip through France. Instead, over the years, Ruth’s short-term memory has become progressively worse, even while she has retained her long-term memories.

“She doesn’t have much short-term memory, you know. She could be here having coffee with us, but when you go, by the time we’ve put these mugs in the dishwasher she will have no memory of the conversation whatsoever. But, if you want instruction in the finer points in Latin grammar, you can still have it. No problem.”

A market for respite?

Over the years, Fred has had to commit more and more of his time to Ruth’s care and has now become her full-time carer. Although they were given very thorough and decent medical attention, Fred feels they have not received the same from the social care system.

 As self-funders (people who are not eligible for financial support with care costs), they feel that while there is a great deal of information available, there is very little formal respite support. Instead they have relied on support from within the local community.

“We live in a village, the village community is great. The village WI is fantastic, we have great friends, that girl next door rang up this morning and said, ‘does Ruth want to come to the screening of the opera tonight?’ All of those things are just great.”

But this community support is not able to meet Fred’s need for a proper stress and guilt-free break from caring, and he has struggled to get these needs recognised and met.

“It [respite care] would help me because I would be able to continue with it [caring duties]. If I can find some sort of relief which would let me into retain some sort of life of my own, then the future would not look quite so bleak for me.”

Looking for something different

Fred feels that the typical offer of support from local authorities (home care or care homes) won’t work for his wife. Home care is both prohibitively expensive and complicated to organise. Care homes are also expensive and Fred has encountered problems in arranging short stays:

“Very, very, few care homes will provide respite care, because care homes are run like hotels, what you want is full occupancy.”

He also feels that residential care would be too institutional and intense for his wife. His involvement with local carers’ groups has drawn him into discussions with the local authority regarding their wider plans for the social care system – but through this work he has encountered dissonance at the heart of the system:

“There are some very good people who are redesigning the model of respite care and they have got a really good model. But I go to another meeting where they’re talking about we need to save £60 million. On the one hand, good people are doing good things, on the other hand they’re never going to achieve anything.”

Shared Lives?

But Fred hasn’t given up on accessing good respite care. He has recently begun accessing a Shared Lives scheme, which he describes with great enthusiasm:

“We have made contact with a super lady who is based in the village across, she runs Shared Lives. She has the right drivers and motivations. We’re busy building that up at the moment, Ruth goes over there on Fridays. I’m hoping to build that up to a point where I get the odd weekend off and then perhaps I might get the odd week off.”

The impact of the voluntary sector

Despite some bad experiences, Fred does not speak negatively about all the support he has received, and he is grateful for the support of voluntary sector organisations.

“A lot of the support I get comes from the voluntary sector, a lot of the carer support groups which are very helpful and valuable are actually provided by the voluntary groups like Age UK and Alzheimer’s Society.”