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Elaine's story

Elaine Kenyon, 65, lives in Accrington, Lancashire, and cares for her husband Ian who is living with a number of conditions including secondary progressive multiple sclerosis, a brain aneurism, as well as severe mobility problems.

Elaine and IanBefore the first COVID-19 lockdown, Ian spent four days a week at their local day centre where he had support from care staff and enjoyed meals, activities, social time with staff and a bath twice a week. The staff at the day centre kept an eye on his weight and ensured Ian remained in as good health as possible.

Ian’s time at the day centre meant Elaine could continue to earn, working two days a week as a support worker alongside receiving Carer’s Allowance. This time allowed her to stay in work, catch up with friends, keep in contact with family and importantly, not need to worry unduly about Ian knowing he was in safe hands.

Once the lockdown was imposed all social care support stopped and Elaine had no choice but manage on her own. Her employer was supportive and, taking into account that Elaine was the sole carer for Ian, furloughed her so she could care.

Elaine went for two months without any outside support, hoisting and moving Ian who due to his condition is unable to support his own weight. She does everything for Ian from personal care to cooking, cleaning, helping him move around and keeping him occupied. She eventually had support from a care worker who came in for half an hour on weekday evenings to help Ian into bed, but it was not enough. Keeping Ian clean and moving him was really difficult.

A year later, Ian has been offered two days a week back at the day centre. However, his condition has deteriorated so much that he has not been able to return – he has spent the last two months in and out of hospital.

Elaine is working again and her wage increased from £8.51 to £9.50 an hour - but this took her over the earnings limit (£128 a week) for Carer’s Allowance, the main benefit for those caring unpaid for 35 hours or more each week. So she hasn’t been able to claim this benefit for the last three months, causing her a huge amount of additional stress while Ian has been in and out of hospital. Despite needing the money, Elaine is now looking at reducing her working hours - simply so she does not earn over £128 a week and can continue to receive Carer’s Allowance, just £67.60 a week.

Elaine is exhausted; “I keep going because that’s what I do, and I will always go the extra mile, but I am absolutely nackerd.” She hopes she and Ian will get better practical support so they can enjoy quality time together, so that she can get a proper break and life doesn’t have to remain on hold.


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