Kate is a parent carer to her son who is ten years old. He was born with a number of problems, the primary one being a rare genetic disorder, along with learning disabilities, ADHD, speech, language and sensory issues.
Kate lives with her partner, son and seven year old daughter. Her son attends a mainstream primary school but with dedicated one to one teaching support at all times.
Being a parent carer has had a huge impact upon Kate’s life. Due to her son’s needs Kate is unable to work in paid employment as she needs to be flexible. As a family they have had to adapt the way in which they live to suit their son’s needs and have very little time as a couple, as specialist childcare is needed.
Kate says, “As a parent carer i always feel as if i am fighting for something. There is constantly something that you need to fight for, for your child. Life is a struggle, it’s hard on relationships, my partner and i often argue about how best to meet our son’s needs, or about strategies for best managing his behaviour.”
“My wish list as a carer is for there to be less red tape, shorter waiting times for assistance or assessments and more resources for children with care needs. I volunteer in a parent liaison role with the ‘We love carers’ group’ to help other parent carers to understand their rights and to work with organisations to improve services for carers.
Val is 69 years old and cares for Bert her husband of 36 years. Bert is 73 and was diagnosed with vascular dementia in 2013. Val had noticed problems with his moods and memory for at least a year prior to the diagnosis.
Bert attends day centre’s for people with dementia five days each week, giving Val some much needed time to herself. Her days and nights are taken up with caring for Bert and ensuring that he is safe and well.
“Life now is all about Bert’s needs. I think about his wellbeing 24/7, it never goes away. I have to consider how he will react in every situation and anticipate his behaviour. Bert has good days and bad days where he simply refuses to get out of bed. I have to manage his care in every way, make sure he eats, drinks enough and takes his tablets. I have to manage his moods which are erratic and accept the fact that he thinks i am interfering all the time. It’s very wearing, draining and it’s just hard”
Phil is a parent carer, who also has disabilities of his own. Phil is paralysed following an operation and uses a wheelchair, also suffering from fits . Despite this he cares, along with his wife, for his adult son aged 29.
Phil’s son is blind, unable to walk, has learning disabilities and has been diagnosed with Friedreich's ataxia, a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination that worsens over time.
Due to his son’s physical needs and learning disabilities the caring role that Phil and his wife meet is extremely taxing. It is physically hard work, as well as mentally draining, has had a huge impact upon family life (Phil and his wife also have a daughter) and makes for a different family make up. Phil actively contributes to carers groups and forums across Dudley borough and lends his voice as a carer to local organisations to influence policy and improve outcomes for carers.
As a young carer, Brad has had very different experiences from other young people who don't have caring responsibilities. He and his family have a really close relationship and love each other very much.
Brad is 19 and lives with his mum and 2 sisters. One sister has an acquired brain injury and mum has bi-polar – a mental health illness.
Brad says “I didn’t enjoy school as I’d worry about mom so I didn’t go that much. Because of her mental illness, at lunchtimes, I would worry more as no-one really looked after her except me and sometimes other family members. People offered help to me but they didn‘t offer the right kind of help – the support they offered took me away from education and that isn’t what I needed. I went to school to be educated so coming out of lessons to talk about help I needed didn't help at all - also I didn't want to stick out and be put in the spotlight. We told people what we would like but it was never acted on so we just got on with it.”
Brad and his younger sister look after their mum and sister. “When mom is manic we won’t know where she is – with her illness she’ll go out spending loads and loads of money or is the opposite and bed bound. Looking out for mom, it’s like something we do without thinking . Because of our age when I was younger our opinions were not taken on board when professionals talked about mom and her mental health. When you are young people don’t listen to your voice . At 18 and a half I was given the power to protect her which I didn’t have when I was younger. I adore her so much. I am the person now who takes responsibility and signs for her to be sectioned which is a horrible experience to see. I have also needed to find out about bills and the mortgage to make sure that we have enough money and the bills get paid.”
Brad has plans to go to university but is worrying about what is going to happen to his mum and who is going to help her out. He doesn’t want his sister to carry all of the responsibility on her shoulders