It is extremely difficult and isolating to have to care for a loved one with dementia. But in Islington there are meet ups every week that you could go to for friendship and advice.
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.
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.
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.
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. At times I wish I could buy a bottle from the chemist marked ‘Patience’ and have several spoonfuls a day!
“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.
“In 2015, my husband had a stroke which 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 carer’s assessment.”
A carer’s assessment is an opportunity to discuss with the council or the Islington Carers Hub what support or services you need. The assessment will look at how caring affects your life.
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 Islington 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.”
Clare explains that her family give her the most support making it possible for her to have some 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 firstname.lastname@example.org.