Caregivers: The secret army of millions ‘sandwiched’ between their children and their parents - where to find help

Dr Jackie Gray and The Carents Room

When Dr Jackie Gray gave up her job as a GP and Public Health Specialist to care for her father during his final years, she was shocked at the multiple shortfalls in traditional support services for older adults and their families. The challenges of navigating the maze of local council, financial and NHS help, whilst dealing with the sudden emotional reverse in parent/child role - plus stress, frustration and fear -were immense.

In 2020, Dr Gray decided to give carers a much-needed voice and an easier path through that maze. The Carents Room was born to provide every piece of information needed by carers as a ‘one stop shop’. Everything has been checked for best practice and written by experts.

The Carents’ website covers every conceivable topic from Dementia to Driving, Loneliness to Legal or Mobility to Money. A good quality of life is essential to both the parent and the carer, but financial worries on top of the emotional stress of caring for a frail parent can be an overwhelming burden.

The Carents Lounge

It is not always easy to foresee the impact of looking after a parent. Not only can it be an emotional experience but there is the isolation and loneliness with which to contend. With conditions like dementia, exhaustion and frustration add to the mix.

Having created the website, the next step was a support group. The Carents Lounge is a private Facebook Group for carers of elderly parents who can ‘come together, share experiences and offer support to each other – in a judgment-free zone’. The group now has 4,000 members who benefit from sharing their stories, their challenges and their worries.

Dr Gray said; ‘Unpaid carers are the backbone of support for older people, yet they face so many challenges. Our focus is to ensure that their voices are heard by decision-makers, so we can help improve the support they receive’.

Esme’s Umbrella joining forces with The Carents Room

For obvious reasons, sight loss is more prevalent amongst the elderly and this may lead to the vivid, silent, visual hallucinations which make up Charles Bonnet Syndrome (CBS). Looking after elderly parents who live with loss of vision and CBS can be particularly challenging. The aging process means that the acceptance of the hallucinations as not being real becomes more difficult. The two worlds begin to blur and the carers find themselves constantly reassuring their parent that there is no one looking through the window, there is no water running down the walls or – most frightening for the elderly person – there is no fire.

My charity, Esme’s Umbrella has joined forces with the Carents Room to ensure that all those carers in the CBS community also have support, current information and friendship.

Carer’s Allowance

Carers are taking a huge amount of strain off the NHS – so the least the Government can do is listen to the Carents Room and give a priority to the Carer’s Allowance, which remains the lowest benefit of its kind. The recent weekly increase is less than the price of a first-class postage stamp.

Carers for people living with CBS do not even qualify for an allowance unless the parent receives certain disability benefits. The eligibility criteria of 35 hours of care a week is a drop in the ocean of the number of hours spent caring for elderly parents, with or without Charles Bonnet Syndrome.