There are over 10,000 carers living in the Isle of Man and 3 in 5 people will become a carer at some point in their life, possibly more than once.
Here is a selection of stories from some of our carers sharing their experiences of caring (some names and images have been changed).
Lauren is 6 years old and lives with her Dad who became a single parent after his wife and Lauren’s mother passed away when she was younger. Lauren’s Dad has MS and therefore struggles with mobility and tiredness.
As a young carer Lauren supports her Dad and helps with practical tasks such as cooking and cleaning. Lauren also answers phone calls and helps her Dad with his medication. Lauren has to take on a lot of responsibilities that children her age shouldn’t have to, and she doesn’t always get to do the things her friends do because of her Dad’s health and accessibility issues.
“Looking after my dad can be quite hard at times. I don't always get to do the same things as my friends because my dad gets tired.”
Lauren has been part of our Young Carers project for a year and in that time her confidence has grown hugely. She gets to take part in activities on and off island and is able to spend time with other children who understand what it means to be a young carer.
“I really enjoy going to Young Carers. I have made new friends and the trips are always really fun!”
Tom is 66 years old and provides care for his mum and dad. Tom’s mum has been diagnosed with advanced dementia and can no longer look after herself. Tom’s dad has Alzheimer's and arthritis and needs full time care.
Tom has had to move in with his parents and has become their full-time carer. This means he has to do physical tasks such as helping his mum get in and out of the bath, and practical tasks such as the cooking and cleaning, and arranging his parents’ medical appointments.
“I was looking forward to my retirement but my parents would not be able to manage without me. For me personally I feel that my role as a carer has meant that I've lost my own identity. My whole world revolves around my role as a carer and all that entails. As a result I don't really have any time to myself and no social life anymore. It's difficult to find a sitter for even something as simple as a dentist appointment.”
Tom has also had to use his own money as well as his parents’ savings to pay for additional care and specialist equipment.
Tom is keen to make people aware of what carers do and the responsibility of being a carer.
“Being a carer has changed my life and I feel that a lot of people are unaware of what it truly means to be a carer. I have had to use my own savings to pay for additional care and specialist equipment and my health has deteriorated.”
Emilie is 21 years old and has helped care for her younger brother who has autism and epilepsy. Emilie has been a carer since she was 5 years old.
“Being a carer has always been part of my life and is completely normal to me. Although there have been times when I wish things were different, I have always wanted to look after my brother as I know my parent can’t do it alone. I love my brother and want to help him with the things he can’t do himself.”
Emilie has just graduated from university and now has a full time job so can’t provide as much help as before but still helped out when she can.
Helen is 72 years old and has been caring for her husband, John, for over 15 years. John has MS and osteoarthritis in his spine and needs full time care. Helen gave up her job 13 years ago to look after John.
John’s health has slowly deteriorated and his MS means he now struggles to move. Helen’s tasks include washing, dressing and toileting John, lifting him in and out of his wheelchair, and taking care of his medication. Helen also has to do all of the cooking and cleaning, take care of their finances and manage John’s care. As he cannot move, Helen also gets up in the night to change his position and make him feel more comfortable.
Helen does not have the opportunity to go out much and rarely gets to see her friends.
“I cannot leave John for long periods of time and arrange for someone to keep him company a couple of times a week when I go out. Otherwise I am with him 24/7. This can be very wearing mentally. I am restricted from going out to meet friends for simple things like a coffee as I cannot leave him.”
Helen and John’s family help out when they can, but they are worried about the future.
“We do not want our family to have to do this in the future as it would deprive them of their freedom and they have their own families to look after.”
Helen and John are supported by Crossroads twice a week when a carer support workers provides Care at Home. This gives Helen some respite from her caring responsibilities and allows her to have some time to herself and catch up on the things she wants to do.
Kate is a mother to two sons, Jack who is 9 years old and Liam who is 12 years old. Liam has cerebral palsy and needs round the clock care. Kate’s husband, Ben, works full time whilst Kate has given up work to care for Liam.
As well as caring for Liam, Kate still has to be a mum to Jack. She often feels guilty as she has to focus more of her attention on Liam and worries about Jack and how he is feeling.
“Being a full time carer, mum and wife can be extremely exhausting. I have very little time to myself and I don’t get to spend much quality time with my husband or friends. I never have time off from caring, and whilst I love Liam and would do anything for him, I sometimes find myself resenting the life I have.”
As her sons are getting older Kate has found herself struggling with new problems. Liam has got bigger and heavier which has made the physical part of caring much harder. Jack also needs help with his school work and wants to take part in more afterschool clubs which can make finances tight.
The family currently have 3 nights a month of respite which allows them to catch up on sleep and spend some time together as a family. Getting respite is crucial to family’s like Kate’s and helps give carers much needed time away from their caring responsibilities.
Jacob is 15 years old. He lives at home with his Mum, Dad and younger brother Harry who has Asperger’s. Due to his brother’s condition Jacob has to provide support in the home by helping his Mum and Dad with elements of his brother’s daily routine. Jacob also has to understand that when the family leave the home, Harry’s needs have to take priority. This means he often has to leave activities or trips out early because of his brother’s behavioural and medical needs. Jacob regularly struggles to find time to himself at home which can be difficult for a teenage boy.
“Looking after my brother is quite tiring and I often get little sleep. When we go out we always have to do things where Harry can come and where there is disabled access. Because of Harry’s condition I’m not allowed to have friends over and feel like I’m always missing out.”
Jacob also struggles with his school work some of the time as his caring role makes him feel tired and he cannot always concentrate at home.
Young Carers sessions give children like Jacob the opportunity to take part in activities he otherwise wouldn’t be able to do. Young Carers give Jacob the chance to socialise with people his own age who understand his situation and allows him to be himself away from caring.
Alf is 81 years old and is a full-time carer for his wife, Betty, who has a stroke 5 years ago.
Since his wife had her stroke Alf’s life has completely changed. They have had to move into a new house to accommodate Betty’s needs and Henry constantly has to think about his wife’s care arrangements.
“I had to give up bowls, which I hugely enjoyed. Unfortunately, due to my wife’s condition I was unable to leave her on her own.”
Alf has struggled with his role as a carer and he does not think that there are enough services available to help him.
“There is limited availability within current services and it is difficult to plan anything in advance. Our children live across but I don’t get to see them as often as I like as I struggle to find respite for my wife.”
Betty attends Premium Project twice a week which gives Alf the opportunity to have some time to himself. Our carer support workers pick Betty up in the morning and bring her home in the afternoon so Alf doesn’t have to worry about transport.
“I have been able to see my friends and even play a few games of bowls since Betty has been going to Crossroads which is brilliant!”
Hannah is a carer for her 31-year-old son Sam, who has cerebral palsy, and her 24-year-old son Daniel, who has severe ADHD and behavioural problems.
“I became a carer overnight when my son Sam was born with severe brain damage. I was then just two weeks off my 22nd birthday. I was told that he would never walk or talk and he would not live beyond the age of five. The hospital social worker suggested I put him in care but I had no intention of giving up my baby.
From that point I became very determined that I could care for my son. When he was just 11 months old, I became a single parent when my husband left. In a few short years I had gone from being a new wife and mum, to full time carer and single parent.”
Hannah’s other son, Daniel, was born when Sam was 7 years old. Hannah noticed that he was very hyperactive and had behavioural problems but was not diagnosed with ADHD until he was 13 years old.
“One of the hardest things I have had to deal with as a carer has been hearing my son tell me that he hated his life, himself and that he wanted to die. As a parent I felt completely helpless and the feeling of guilt that I had failed him was enormous.”
Sam and Daniel attend Social Club which gives Hannah much needed respite. It gives her time to break from her caring responsibilities and allows her to maintain a part time job.
"Being a carer has completely changed my life. For a while I felt as if my identity had been lost but since receiving support I am able to take a break from caring and enjoy the things I used to do."
NATALIE, AGED 42