Carers of disabled family members can be vulnerable to feelings of isolation and being overwhelmed. Able Magazine invited several leading care organisations to share stories illustrating how they support carers.
Caring for disabled people can be mentally and physically challenging to say the least but there are organisations that can provide much needed support and relief for carers.
Carers Trust – Supporting Carers Across The UK
Carers Trust is the UK’s largest charity supporting unpaid carers. A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. Anyone can be a carer and three in five of us probably will be at some point in our lives.
We do this with a UK wide network of quality assured independent partners, through our unique online services and through the provision of grants to help carers get the extra help they need to live their own lives. With locally based Network Partners we are able to support carers in their homes through the provision of replacement care, and in the community with information, advice, emotional support, hands on practical help and access to much needed breaks. We offer specialist services for carers of people of all ages and conditions and a range of individual tailored support and group activities.
The Higginson family
Ruth Higginson explains how Carers Trust Cambridgeshire have supported her family:
“In our family there’s me and my husband Mark and triplets Jamie, Phoebe and Amelia who are eight. Then there’s big sister Josie who is 10.
Phoebe and Amelia are physically and mentally disabled. They have a very rare chromosome mutation called GRIN2B. It affects the way the brain communicates with the body. So they are unable to walk, sit or stand unaided. They need round the clock care as they cannot do anything for themselves.
Both girls have scoliosis of the spine and need hoisting or lifting into their wheelchairs and are doubly incontinent. Because they are unable to eat or drink the girls are fed via a gastrostomy and given medication down their tubes. The girls are unable to speak and can only communicate by crying or laughing. Our nights are very disturbed as the girls do not sleep much and wake us up as well as each other.
Josie and Jamie help us to look after Phoebe and Amelia and also generally around the house. Having two disabled girls is physically and mentally exhausting, especially with little sleep so it’s important that the children help so that the family can function.
Josie and Jamie have many tasks that they undertake. Helping with nappy changes especially with two at once; it’s all hands on deck! They push the girls’ wheelchairs to the minibus, operate the lift and work as a team to clamp the wheelchairs in. They give the girls water via syringes and programme and operate their food pumps. They help to dress the girls and comfort them when they’re upset. Sometimes, if Josie is woken by the girls in the night she will get into one of her sister’s beds to comfort her so that we can go back to bed and get some more sleep. We have a list of jobs that Jamie and Josie can do to help in the house such as cleaning the toilets, vacuuming the house, steam mopping and emptying the dishwasher.
As a family we are so grateful for the support we receive. Jamie and Josie have been wonderfully supported by the young carer team at Carers Trust Cambridgeshire. They meet other children in similar circumstances and it gives them an opportunity to express their thoughts, be understood and also feel valued for their caring role. They love going on the outings and having the chance to enjoy themselves without having to think about looking after their sisters.
Their school is also supported by Carers Trust Cambridgeshire and the Young Carers in Schools programme which, in turn, allows their classmates to acknowledge and understand their situation. Carers Trust have funded a few trips that we have made as a family which were so special. We particularly enjoyed Warwick Castle last summer which gave us very happy memories. The highlight of our Christmas was receiving a hamper from Carers Trust: the first ever!
Josie and Jamie had little things for them. It was so thoughtful. The whole family felt supported and it made us appreciate the care we receive from Carers Trust Cambridgeshire.
Josie and Jamie are both supported by Carers Trust Cambridgeshire. Young Carers Senior Support Co-Ordinator, Alice Boon, outlined how inspirational Josie and Jamie were as young carers saying: “Josie and Jamie are a wonderful credit to their family, they are a delight to work with. They adore their sisters and love to help their parents. Our service provides a positive environment for them to join with other young people in similar situations.”
About Carers Trust Cambridgeshire
Carers Trust Cambridgeshire is a network partner of Carers Trust and has grown significantly over the past seven years, providing more services and more help for family carers and their families across the county.
In 2014-15, Carers Trust Cambridgeshire/Peterborough provided over 54,000 individual breaks for carers of adults, young carers and families of children with disabilities.
We help Cambridgeshire family carers through:
Quality respite care so they can leave their loved one to go shopping, go to the hairdressers or just have a rest, company, outings and personal and social care groups for all ages, including carers groups, young carers and short breaks for disabled children and young people, including those with autism and ASD.
In terms of the support we provide for disabled people and their family carers, we are an information and advice-based charity. We are also the UK’s only national membership charity for carers – and membership is free. We want to break carer isolation by reaching out to those who are looking after someone and let them know that we are there to help with advice, information or simply to talk to:
- Through our free Adviceline service our experts are there for carers five days a week. Our advisors provide practical and financial advice, as well as information on carers’ rights and entitlements, whilst our fantastic listening support volunteers provide emotional support two days a week (Freephone: 0808 808 7777).
- Our website is brimming with practical advice and information: www.carersuk.org
- Our online forum of carers never sleeps, so carers always have somewhere to go for support and understanding: www.carersuk.org/forum
- We develop innovative ways to help carers to look after their loved ones – and themselves – well. Our app offers a simple and practical way to share information and coordinate tasks amongst a group of people who are helping to look after a loved one: www.carersuk.org/jointly and our online tool ‘Upfront’ gives people who are new to caring, tailored advice and information to fit their personal situation: www.carersuk.org/upfront
- We influence change at the highest level through our research and campaigns; making life better for carers and strengthening their rights and entitlements through influencing legislative change.
- Our network of local volunteers help to break the isolation and despair some carers feel.
How the Carers UK Adviceline helped Norman
Norman cares for his wife Rosamund who has MS. Rosamund was diagnosed when she was 38 and for the first 10 years her illness progressed slowly. Then, quite suddenly, the impact on her physical health and ability became rapid. Norman found himself trying to juggle work and increasing amounts of care for his wife. He was trying to manage on only three or four hours sleep a night and life became a constant struggle to manage. At 56 Norman reached crisis point. He was on his way to work when he collapsed. The serious impact on his physical and mental health meant Norman had to give up work to care. This also meant the couple’s income plummeted by 60% and they fell into serious financial difficulty and almost lost their home. Norman called the Carers UK Adviceline and he said it was like “a bright light being switched on – I was finally given hope that things would get better.” Now more supported in his caring role, Norman is an active campaigner for carers’ rights and volunteers locally for Carers UK and his local Carers’ Group.
Many parents fear the unknown when they find out their child is disabled. They worry about what the future might hold and too often don’t know where to turn. Navigating medical jargon, doctor’s appointments and trying to get the right support for their child can be incredibly stressful. But being the parent of a disabled child is hugely rewarding.
Getting the right information and support at the right time is crucial for parents.
Jenny found out her son Harry had cerebral palsy just before Christmas. She didn’t understand his condition or how to support him. Here, she explains how calling the Scope Helpline was the moment everything changed and how vital support is to families like hers.
“Three years ago, my son Harry – who was five years old at the time – was diagnosed with cerebral palsy.
Harry had been complaining of tiredness and pains in his legs. A physio told me he was a typical boy, being lazy. But I knew there was more to it.
Harry would also keep falling over, his feet turned inwards and there was other behaviour I couldn’t understand – he would have a meltdown if there was the slightest change in his routine. I thought I’d broken my baby
I had to fight to get an appointment with a consultant. When finally we saw him we talked for only a few minutes. He told us that Harry had cerebral palsy.
I asked, ‘what is it?’ and ‘how did it happen?’ He said I must have fallen during the pregnancy, scarring Harry’s brain. We left without any leaflets or further explanations.”
The information given to Jenny was incorrect.
“Even though I knew I hadn’t fallen, I burst into tears. I thought I’d broken my baby.
When Christmas came, we were still in shock. Usually we’d spend the day with my mum, but instead we stayed at home on our own. It wasn’t nice.
We’d bought Harry a bike for Christmas and he didn’t want to go on it. Looking back now, I realise it wasn’t the right present, because of the pains in his legs. But we’d bought it before we understood what Harry was going through.
Calling Scope’s helpline
I’m so thankful I found Scope’s helpline number. Jackie, a Scope Information Support Worker with 17 years’ experience, called me back the same day.
Straight away, I realised I was talking to someone who understood. I could see a future, because Jackie could help me understand Harry’s needs and how to help him.
Ever since the day of that first emotional phone call, Jackie has been an amazing support. She understands cerebral palsy and she understands Harry. That’s invaluable to me.
With her help, we’ve adapted to Harry’s needs and so has everyone in his life. Harry is doing really well at school and we are starting to think ahead to when he moves on to secondary school.
It isn’t just Harry’s life that’s better, it’s the whole family’s.
Harry is doing really well at the moment. I’d say that the thing he is looking forward to most is booking a holiday to the beach in the summer holidays. He is too nervous to fly so it will be a beach in the UK that we can drive to, but he loves the beach and going to the clubhouse in the evening and entering competitions!”
For help or information about disability please get in touch with Scope by phoning: 0808 800 3333 or email: firstname.lastname@example.org