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Carers Leeds offer support and hope to carers in the city. We uncover a bit more about the people that care.
WRITTEN BY: VALERIE WOOD - ROBINSON
DEC/JAN 2022/23 ISSUE
Many older people find themselves looking after relatives or friends. For some, it’s their mum or dad. For others a sister, a neighbour. Or an adult child. Many people are carers and don’t know it! Carers often do not recognise themselves as such. “It takes, on average, 2 years for a person to realise that they are a carer,” says Nikki Pattinson, Team Leader at Carers Leeds. “In that time, their own health can suffer, friends and family can pull away and feelings of loneliness can become commonplace.” You may be surprised to learn that there are over 75,000 unpaid carers in Leeds.
A carer is defined as someone who, without payment, provides help and support to a relative, friend or neighbour who could not manage without that help. This need may be due to age, physical or mental health issues, disability or substance abuse.
Carers Leeds aims to enable the well-being of carers by offering support, advice and social activities. The staff provide the framework and support is provided by volunteers. Volunteers say that they benefit from their role as much as the carers they are supporting, as it raises their self-esteem, feeling of satisfaction and it offers social engagement. Below, we hear from Dianne, a volunteer befriender, who has been involved with the organisation for over 20 years.
The organisation encompasses many different services. One of these, Carers Connecting, encourages carers to get out and about. We meet Cinzia, who runs the project. Another strand is digital support. Dorothy Colley shares her experience of getting online. One of the main functions of Carers Leeds is as a listening ear. “We deliver confidential one to one and group support that helps carers keep on caring.” says Nikki. “We are based in the centre of Leeds, but we also offer support in local communities, over the phone and online.”
We could really sense the “care” in Carers Leeds. Down-to-earth care, empathy, mutual support, joy and friendship pervades the whole ethos of this organisation. We hope some of that care reveals itself in the pieces below.
Dianne is a volunteer with Carers Leeds. As a volunteer befriender she is matched up with a carer and they meet 12 times over a series of months. Dianne was a carer herself so knows about the difficulty of being in that position.
My involvement with Carers Leeds goes way back to 2000. I had been thrown into the role of carer for my mum Doreen who had heart disease, other ailments and then a diagnosis of vascular dementia. Though mum was living with me, our relationship it was not the best, though it was not acrimonious. To find that I became the main carer for her was difficult. It wasn’t a case of, “Yes, I must care for my mum” or even “Do I have to?”, it just came naturally that I would care for her - because I care.
At that stage the input from Carers Leeds was minimal but very supportive – they gave me advice on finances. I took it further in 2004 when Mum’s physical health was deteriorating and I was struggling. I came back to Carers Leeds, who directed me to sources of funds to get a stairlift and other facilities. They also gave me a social life by joining groups with a range of other carers.
Alongside my caring role, my first volunteering with Leeds Carers was with the “envelope stuffing” team to mail out the Carers Leeds Newsletter. This was a way of getting a bit of “me time” and a great way to have a chat and a laugh. Until she became too unwell, I could take Mum along with me and also to meetings and socials. It enabled us both to feel we were giving something back. “Carers Leeds” says it all: they care, they care for me as a volunteer, as a carer, as an ex-carer. They’ve always cared. They encourage carers to volunteer in appropriate roles and to bring their experience as carers.
After my mum died, I wanted to continue my relationship with Carers Leeds. My volunteer role now is as a befriender, which I started around 2016. I have supported carers both by telephone and face-to-face. Befriender is a bit of a misnomer, because within the volunteer role I can’t actually be a friend to them. There is a different set of boundaries. I’m not a professional support worker or counsellor, a coach or a mentor. I don’t like the American word “buddy”, but that’s what I am. I try to be warm, welcoming, happy and consistent.
Carers often go into the background and disappear. When I was caring for Mum, I became a non-entity. The funding all related to her, it was very much, “Is Mum OK, does she need this or that?” You literally do become invisible. The caring role is very isolating: friends don’t understand, so you lose them; family don’t want to go there. You become number one in a vast black hole of everything, you lose social life and feel worthless. You can forget about your own health and neglect it.
When I was in that black hole, Carers Leeds represented safety and a welcome. It helped me to find my way out on more than one level. The Befriending scheme was not yet there when I needed it. There is only so much you can tell your friends and family, my caring role would have been easier if I had a befriender to tell.
Having said that, most of my befriending has not been talking about the caring role, but giving that carer a chance to be a normal person by talking about anything that interests them. It takes people out of their environment. I started befriending to give something back, but it continues to give back to me. Maybe it sounds selfish, but it gives me such a good feeling that I know I am helping and supporting people. I feel appreciated and valued by both Carers Leeds and the people I have befriended.
To be a Befriender you have to be a good listener. You have to be self-aware and beware of overstepping the mark and becoming a personal friend. I am a Christian and my last two matches have been Christians, but I have had such a wide range of carers to be in contact with. For my own sake I have taken a big interest in dementia and in bereavement. You lose people over and over with dementia. I prefer a match with someone over 50, older than myself, because I feel that I have rapport with that age group.
I have a good social life at Carers Leeds. Volunteers have get-togethers with socials, crafts, picnics and peer support. Everybody cares for everyone else. The care is genuine. So much of the work of Carers Leeds is supported by volunteers, all are valued. What I get out of my involvement with Carers Leeds is satisfaction, support and self-esteem, and, if it doesn’t sound too trite, love.
Has this story inspired you to volunteer? Carer Leeds always needs people to help in lots of roles. Contact them for more information.
Cinzia Procter runs a project called Carers Connecting, which aims to help carers get out and about. We spoke to her to find out more.
Cinzia Procter has high hopes for her new project. “We want to end the loneliness that some carers feel,” she says. “I’m a carer myself so I can empathise.” It’s hard to get out when you are looking after someone. The Carers Connecting project provides enables carers to go on short excursions in and around Leeds in group outings by private minibus.
Cinzia is ideally suited to manage Carers Connecting. She’s worked in the travel industry to organise excursions. More importantly, her personal experience as a carer means she understands their needs, constraints and potential social isolation. “Caring is complex,” says Cinzia. She likens a carer’s life to an iceberg, where the obvious everyday caring responsibilities are represented by the 10% tip of the iceberg. There is so much more going on under the surface. Cinzia wants to gently encourage carers to put some time aside for their own well-being.
This project is all about connection. “The long-term goal is that people make connections in their local areas,” says Cinzia. “Then they can carry that friendship on when we finish.” Sometimes it’s good to meet other people who are going through a similar experience. The team are looking for new participants. “We will try to reach carers who have not used any of our socialising services,” says Cinzia.
Cinzia wants to make the outings as easy as possible for carers. The trips are free and the minibus can pick people up in a convenient location. Even the routes and times can be tweaked to meet people’s circumstances and the constraints on them. Cinzia has a programme of visits already arranged: to Skipton, Leeds Playhouse, Tong Garden Centre. “The world is our oyster!”
If you or someone you know is a carer over 50 and might like to know more, get in touch via the details below.
Dorothy Calley married Maurice in 1957 but in recent years she has become a carer for him. Carers Leeds supported her to get online to help in day-to-day life.
Dorothy’s husband Maurice lives with dementia and she has cared for him for many years. “It’s been extremely difficult,” confides Dorothy. “He’s quite frail.” The experience was very hard for both of them: “I lost weight and Maurice lost weight.” Dorothy’s husband now lives in a “very nice” care home in Morley. “I visit him every other day,” she says. Though it has been a stressful time, “things are improving.”
Last winter Dorothy noticed a piece in the local paper about the possibility of getting access to a free laptop or tablet. “I used to work in an office,” she says. “I used a computer and I loved it.” However, Dorothy had no such device at home. She’d had a computer but “it got a virus” and she couldn’t afford to get it fixed. Dorothy linked up with the Carers Leeds digital project and was provided with a tablet. “It came with the internet!” reveals a delighted Dorothy.
Dorothy was supported by Holly at the Digital Inclusion Project at Carers Leeds to help her use the device. “Google was wonderful!” says Dorothy. She searched for new carpets and gas fires. “Holly was brilliant,” she continues. “She helped me with what to do.” The tablet opened up new worlds for Dorothy and helped her keep in touch with others. “Now I use WhatsApp all the time. I love it!”
Are you a carer and want a bit of help digitally? Get in touch.
You can find out about all the things Carers Leeds offer by calling or emailing:
Carers Advice Line – 0113 380 4300:
Mon – Thurs 9am – 5pm and Friday 9am – 4.30pm
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