Celebrating Carers Week
Across the country, 6.5 million carers are supporting a loved one who is older, disabled or with a physical, mental health need or a substance misuse issue. That’s one in eight adults who care, unpaid, for family and friends. In Islington alone, there are around 16,000 carers, which is nearly 8% of the population.
With Carers Week starting on 12 June, we take the opportunity to focus on the amazing – but far too often overlooked – contribution that carers make to society, and hear from local resident Clare Roels, who cares for her husband who has dementia.
What is a carer?
Carers provide a variety of emotional and practical support. Their roles can vary enormously depending on the circumstances of the person that they care for. It could be round-the-clock or for a few hours a week, in their own home or for someone living many miles away.
Clare explains her caring role. “My husband was diagnosed with dementia in 2011. His condition means he can’t take responsibility for more than a few daily activities. He gets confused and forgets what he is doing halfway through doing it. He has a dis-executive impairment, which means he can’t connect things and do tasks in the right order.
“As a result, I’ve got to be on top of things 24-7. I organise everything for him. I have to do all the thinking, make all the decisions, organise the diary – from social activities for him, to doctor and dentist appointments – through to having the car serviced. It’s a lot like looking after a small child in that respect.
“We used to share these kinds of chores, but I have to do it all now.”
Being a carer isn’t easy
Most people who care for someone do so through duty or affection and without any expectation of being paid. But taking on a caring role can mean facing isolation, financial hardship, frustration, ill health, stress, anxiety and depression.
Clare explains, “For me, my husband’s dementia has been like a bereavement. It’s like living with a stranger. We used to have an equal relationship. Now empathy, care, encouragement, awareness, patience are almost all one way.
“My son says that the biggest impact on me is loneliness. It is really hard no longer having that person you’ve had by your side for so long. We’ve been married more than 40 years and used to make decisions together. It’s the 24-7 nature of the caring that I find the hardest. I can’t clock off at the end of the day. My caring role doesn’t stop and it can be physically and emotionally exhausting.”
Many carers make huge personal sacrifices – giving up an income or future employment prospects to become a carer, or juggling jobs with their caring responsibilities.
Clare says, “I have had to put some of the things that I wanted to do in my retirement on hold. I had just started mixed media sculpting when my husband’s dementia was diagnosed, but I don’t have time for that any longer. I have developed what I call my Teflon coating which helps me deal with things when they get really difficult.
“At times I wish I could buy a bottle from the chemist marked ‘Patience’ and have several spoonful’s a day!”
Recognising a caring role
Most people become carers without realising it and many don’t recognise themselves as carers and feel they are just fulfilling their ‘duty’. There is evidence which suggests it takes an average of two years for carers to acknowledge their role as a carer.
Clare supports this view. “Initially, I just thought well, ‘for richer or poorer, in sickness and in health’. It’s just what you do isn’t it?
“In 2015, my husband had a stroke and things began to change quite quickly. The stroke accelerated the symptoms of his dementia and his behaviour became more unpredictable and difficult to deal with. It was like being thrown into a new job without any idea how to do it and no one to show you how. That’s when I decided to get some help and had a carers assessment.”
A carer’s assessment is an opportunity to discuss with the council or the Carers Hub what support or services you need. The assessment will look at how caring affects your life. Anyone who is aged over 18 and caring for someone who lives in Islington can request a carer’s assessment. The person you are caring for doesn’t need to be receiving support from social services and you don’t need their permission to request a carer’s assessment.
Support for carers
Carers up and down the country are holding families and communities together. They are at the heart of community care and their contribution deserves to be recognised, supported and celebrated.
As well as being crucial to the person they look after, carers also make an enormous contribution to society as a whole. Some estimates say carers are saving the country £119bn a year, or almost as much as the entire cost of the NHS.
Despite her own challenges as a carer, Clare considers herself fortunate. “I’m really lucky, because I have a network of people around me which is so important.
“The Carers Hub really helped me to navigate and understand the support available locally. They set up sessions for local medical students and GPs to meet carers and learn first-hand what our experiences have been. It’s therapeutic for us carers to tell our stories and provides insight for clinicians. My GPs at St John’s Way Medical Centre have been brilliant too.”
“Getting some respite is important for me. My husband attends the Outlook Centre which supports people who have had a stroke. He has lunch and goes to art and exercise classes. My neighbour takes him to lunchtime concerts and recitals. As well as giving me a break it means my husband can retain some of his own independence.
“It’s my family which give me the most support. Our two children, their spouses and our grandchildren have been invaluable as listening ears and giving me unbiased help in making my own decisions. I was lucky to have a weekend away with my daughter recently, while my son looked after my husband. It was so kind of them and it was wonderful to be able to have time to relax.
“When immersed in a world of dementia it’s sometimes hard to be clear and objective. I couldn’t do it without them”
If you are a carer and looking for support, the Islington Carers Hub provides a single point of access for all carers’ enquiries in the borough. For more information call 0800 085 114, 020 7281 3319 or email email@example.com. You can also contact Carers UK, the national help and advice line on 0808 808 7777.
Carers Week 2017
Each June Carers Week puts the spotlight on carers across the UK and highlights the vital role that they play. This year it takes place from Monday 12 to Sunday 18 June.
Islington Carers Hub and their partners have put together a programme of events for carers across the borough. You can find the full programme on their website or call 020 7281 3319 for more information.