In these days of rapidly ageing populations, the emphasis has been on how to find and fund care for those who need it. But West Sussex County Council estimates there’s a whopping 89,000 people in the county who are caring for them as part of their unpaid, daily lives. It’s a tough role – and they need support too.
Becoming a carer can happen to any of us. Sometimes it can happen very quickly, for instance if a loved one suddenly becomes ill. For other people, becoming a carer may happen gradually, so gradually that they don’t always realise they are a carer.
Carers Support West Sussex’s definition of a carer is ‘someone who looks after someone who could not manage without their help’. This covers a whole range of support that carers give, and it can refer to family members, friends, parents or partners.
Indeed, according to West Sussex County Council cabinet member for adults and health Amanda Jupp, there are 89,000 unpaid carers in West Sussex, including thousands of children.
“A lot of people don’t consider themselves to be carers,” she says. “They don’t recognise that’s what they’re doing – so we’re working with schools and our youth and early health team to make contact with families where a child might be a carer.”
Anyone who looks after someone else with additional needs due to illness, frailty, disability or through drug or alcohol problems is a carer. It is estimated that 1 in 10 of the population falls into this category.
It’s hard enough for a carer juggling work, family and other responsibilities to find help with the person they’re caring for, let alone find the time to look for support for themselves. And because of their very nature, a carer will often put themselves at the bottom of the mounting pile of priorities.
But while being a carer can be very rewarding, it’s also an emotional rollercoaster that causes a whole range of unexpected emotions, including guilt, loss and sadness. It can be very easy to feel isolated, especially when caring for someone with limited mobility; easy to lose oneself and believe that no one else can possibly empathise.
But they do. There are thousands of other people going through exactly the same thing and getting together with them is vital, says Bill Demel, the community development director of the Bradbury Wellbeing Centre, a day centre especially built for people living with dementia and their carers. It adjoins the charity Guild Care’s Haviland House care home in Worthing.
“Bradbury Wellbeing Centre provides a home from home, a hub where people can meet others who are sharing similar experiences in a relaxed and supportive environment,” says Bill.
“We hold carer group meetings and ensure there are lots of opportunities for carers to meet socially as we know how important it is for carers to have time together to share information, experience and for them to spend time with others who they have so much in common with.”
So now you know there is support available, where do you you start? Who do you ask? How do we know what there is ‘out there’? See opposite for our guide of who you can
There is help out there for carers – start with your GP
To begin with, it’s easy to forget to start with the basics like letting your GP (and the GP of the person you are caring for) know that you are a carer, as they can offer additional support.
Carers Support West Sussex (West Sussex County Council)
Offers a range of practical and emotional support to people caring for someone with long-term illness or disability. They run support groups and other activities, in many locations, helping to reduce feelings of isolation and advising on practicalities like how to access the Carer Wellbeing Fund and how to obtain equipment to support independent living.
0300 028 8888
9-5 Mon-Fri, 10-12 Sat
WSCC also has information on its website, on its social care and health pages, under ‘Caring for other people’, as well as a link to Connect to Support, for further information.
West Sussex Carers Health Team
A team of health professionals aiming to improve the health of carers and the person being looked after. It is a free, Sussex Community NHS Trust service for carers over the age of 18 in the county.
They work directly with carers and help develop individual strategies to help reduce the strain of coping with their
Two contact points:
South Carers Health Team: 01243 623521 (Littlehampton, Storrington, Worthing, Shoreham, Chichester, Midhurst, Petworth, Arundel, Pulborough, Billingshurst and Bognor Regis).
North Team: 01403 227000 ext 7613/7686 (Crawley, Horsham and Mid-Sussex)
Apply for a Carer’s Emergency Alert Card through the careline, which will identify you as a carer. Register confidential details with them and give them a contact who they will notify if you have an accident or are suddenly taken ill.
www.chichestercareline.org.uk 01243 778688
West Sussex Age UK
Provides free confidential information and advice on a wide range of issues for people aged over 50 and their families and carers. They can advise on issues such as finding help at home, financial advice, housing needs, health, care at home, support for carers, welfare benefits and family as well as many other issues.
www.ageuk.org.uk/westsussex 0800 0191 310
Supports more than 3,000 people a year, including carers, dementia sufferers, families with children with disabilities and older people with learning difficulties. Covering the Worthing area from Shoreham to Littlehampton and up to Findon, it offers respite, care homes, outreach programmes, home care services, sheltered housing and its specialist dementia home, Haviland House, where the Bradbury Wellbeing Centre was built for families of those with dementia.
A national support organisation, whose aim is “to make life better for carers”. Telephone and online support.
020 7378 4999
Help with transport
For those who have difficulties with mobility or find public transport unsuitable there are many services offering community transport, such as Adur and Worthing’s Dial-a-ride, which offers wheelchair accessible minibus services at a lower rate than commercial taxi services. A full list of these can be found on the West Sussex County Council website (www.westsussex.gov.uk) on their Social Care and Health pages, under the ‘Getting out and about’ tab.
Many towns offer mobility scooter hire for shopping trips, such as Bognor and Worthing Mobility and Horsham, Littlehampton and Chichester Shopmobility schemes. Details can also be found in the pages of the West Sussex County Council website.
The website gives lots of advice for carers, including financial advice on what you might be entitled to, for example the Attendance Allowance and Carer’s Allowance that you might qualify for. Some benefits aren’t even means tested. The website has forms to fill in and calculators which will help you find out what you can get.
0800 319 6789
And when it comes to money troubles, the best of us can find ourselves slipping into debt – but don’t leave it too late; again, there’s help available and both of these charities will tell you where:
National Debtline 0808 808 4000
Stepchange 0800 138 1111
And for any other help, the local Citizens Advice Bureau is always a good start.
Melanie (that’s what we’re calling her) is 80. Her husband was diagnosed with dementia two years ago, aged 82.
“At first it was just memory loss, but gradually it got worse and one day he went wandering down the road and nearly got hit by a car. When the police came he didn’t know his name or where he lived. At the time I hadn’t realised he needed watching all the time. It got worse and worse. At night he wouldn’t sleep, he would wander around hiding things.
He would refuse to go to bed, for days on end I wouldn’t get any sleep – he’d nod off in the chair during the day but never for long enough for me to get any real rest. And it was so difficult to get him to wash, or indeed for me to find a spare ten minutes when I could have a shower. I had to lock him in the flat when I did that.
In the end I contacted the Alzheimer’s Society, and they sent someone in twice a week so I could go shopping and do bits in the garden. When my son finally realised how hard it was getting he was horrified – he lives in Wales and hadn’t known until he came on a visit and my husband didn’t recognise his wife. He organised some respite care at a care home, and that was a life saver. He stays there for two nights a week, and they come and get him so I don’t have to force him to go.
It breaks my heart every time he goes in, but I know that if I didn’t get that break he’d have to live there full time. I know that’s going to happen anyway, but at least this way I can put it off for a while.
You want to cling on to them as long as you can, but if your own sanity goes, what use is that?”