Increasing numbers of families are involved in ‘sandwich caring’ – adults looking after both an older loved one and their own children. Sheena Hastings reports.
AMANDA Hinchliffe is 41 and from Dewsbury in West Yorkshire. She has cared for her uncle, Melvin Gill, for 20 years. Melvin, who is now 62, has Down’s Syndrome. Four years ago he suffered two small strokes and now also has vascular dementia.
Until he was 40, Melvin was cared for by his mum, Amanda’s grandma. When she died the family got together and decided that Amanda, who had grown up with Melvin, would be the best person to take over his care.
Amanda looks after Melvin alongside raising her two children, Sophie, 16 and Alex, 13. The deterioration in Melvin’s health has had a major impact on the care he now needs. He has to be helped to dress and with personal care, and can no longer cook for himself. He cannot be left alone in the house for more than short periods and cannot go out by himself.
Amanda and her husband Terry both work full-time, and she is a community support officer for North Kirklees Social Services, juggling her job with her children’s and uncle’s needs. She has been in her job for 16 years and has recently been working double shifts to meet increased demands on the family’s finances.
“When Melvin was diagnosed with dementia things changed. Now I definitely don’t come across as his niece – I am definitely his carer now. He was quite independent but his needs have changed. The dementia has brought about changes in his personality and behaviour which can be very difficult to manage. When he doesn’t want to do something he can throw himself to the floor and it can be stressful,” Amanda said.
Up until 18 months ago Amanda received no outside support. As a result of Melvin’s decline in health, the family have now organised a care package so that Melvin has someone to help him get up and dressed on the mornings when Amanda works.
Amanda says she finds it very difficult to juggle work and care. When Melvin’s care worker is ill, for example, she has to take annual leave to cover his care. It is also very difficult for the family to get time to socialise together, but Amanda is determined to do all she can to be there for Melvin.
“I want Melvin to stay at home for as long as possible. I know from my own job that people with dementia can go downhill overnight when they have to deal with sudden change. I don’t want that for Melvin. He’s my uncle and I love him to pieces.”
Amanda is by no means alone in working hard to do her best for a family member who’s in her care as well as her own immediate family. It’s an exhausting business in many ways, as Yasmine can also testify. She has a one-year-old daughter and also cares for her infirm 80-year-old mum, Elaine.
The stress of covering her different roles – Yasmine was also her father’s carer until his death after several strokes and suffering dementia for years – led her to give up full-time work. She says the emotional and mental strain are the most difficult aspects of her caring role.
“The constant worry can easily get you down, and it’s hard to find time for a personal life because caring takes up so much time and is so physically and mentally draining.”
Carers who are part of this ‘sandwich’ generation often report financial worries, health problems, relationship troubles and isolation among the difficulties related to their role.
New research published today by leading charity Carers UK to coincide with National Carers’ Rights Day shows that four in ten sandwich carers are struggling to cope, with family finances and marriages often suffering. Three-quarters had seen a loss of earnings and 95 per cent said the pressure affected their ability to work. As a result, more than half said the cost of caring for older relative was squeezing the family budget.
The burden of simultaneously shouldering responsibility for young and old is also putting enormous strains on family life, with two-thirds of sandwich carers reporting damage to personal relationships. A fifth of 45 to 60-year-olds are reckoned to be actively supporting parents while their children are still at home.
Just over half juggle work and caring for children and older relatives but a third had had to give up work to meet the demands of caring. Women were four times more likely than men to give up work to care for those at home.
Today’s events across the country aim help make carers who may be feeling isolated aware of what help is available in terms of finance, services and advice, including their entitlement to a local authority assessment of their needs.
Emily Holzhausen of Carers UK says one of the things that need to be improved for carers is access to information about what support and care – publicly or privately provided – is available.
“Our research shows that it’s not just personal care help that people need – but also domestic services such as cleaning and gardening, which local authorities have cut down on over the last few years. We all need to understand that one day many of us will be in the position of being a carer or being cared for, and we should all support anything that can improve carers’ lives.”
Ms Holzhauzen says that, where possible, employers should be willing to offer flexible working, so that carers can respond to emergencies and work around whatever their commitments are at home.
“There also needs to be an ethos of being able to discuss your caring role outside work while at work, so that colleagues and employer have some understanding. People tend to talk about their kids but not how they look after mum or dad, too. We should all understand the challenges and pressures carers experience,”
People who are busy juggling care of a still-growing family as well as looking after an older and poorly or disabled relative as well as trying to work outside of the home often don’t have the time to find out about help. Employers could help here by making information about advice and services available in the workplace, says Ms Holzhausen.
As a campaigning group, Carers UK is calling on the government to put more money into the social care system, and recognise that the growing older and older disabled population need more support and services. The need won’t go away, says the charity. It will only get bigger and more urgent.
“Carers do incredibly valuable and selfless work,” says Ms Holzhausen. “In the case of sandwich carers, it’s not right that many get so little help that they feel they can’t look after either their children or their older or poorly relative properly.”
www.carersuk.org/help-and-advice or call 0808 808 7777
The Yorkshire Post Give Young Carers a Break appeal is raising money for the thousands of selfless children across the region who devote their time to looking after sick or disabled loved ones. Our appeal is asking readers and businesses to help fund special, fun-filled days out that will give young carers well-deserved respite from their responsibilities.
As well as bidding in our charity auction, you can help by: making a secure online donation at www.justgiving.com/ypyoungcarers or by sending a cheque payable to LCF Young Carers to: YP Young Carers Appeal, c/o Leeds Community Foundation, 51a St Paul’s Street, Leeds LS1 2TE.
A nation of six million carers
The latest figures on the number of carers in the UK are projections based on the 2001 Census. Carers UK and the University of Leeds estimate that there are nearly 6.5m carers in the country, a rise of just over nine per cent from 5.8m in 2001. This represents 10.5 per cent of the total population, or one in eight adults.
There are 1.9m people caring for someone else for more than 20 hours per week and 1.25m caring for more than 50 hours per week. Carers UK research shows the number of carers is likely to increase.
The charity’s 2002 report It Could Be You showed that demographic change coupled with the direction of community care policy will see a 40 per cent rise in the number of carers needed by 2037, meaning the carer population will reach 9m.