* From ASP, Italy
“My name is Anna, I’m 28 years old and I’ve got a beautiful sister aged 32 whose name is Sabrina. Sabrina has Downs Syndrome. I know that when Sabrina was born it was a shock at the beginning for my parents. When my mother was pregnant everything seemed normal. Doctors didn’t realise anything; they said the baby was healthy, so when Sabrina came into the world, my parents’ first reaction was shock and fear.
But, as soon as they got her home they started to love my sister and that love has never ended.
I was born four years later. When I was a child I felt ashamed to go out with my sister. People turned their heads to stare at her, I felt observed and uneasy. Other children kidded me shouting that my sister was handicapped.
So at the beginning it was difficult. My parents helped me, they tried to explain and make me understand that my sister was different from me and that I shouldn’t feel neglected or ignored, because they loved both of us. They said “simply Sabrina’s needs are different from yours and sometimes it takes more time to respond to them”. Looking back I realise that I started to love her gradually and then wanted to protect her. I remember that one of my big satisfactions was the first time when I had the courage to take on a class mate who insulted her.
Now I’m older, almost adult I’d say. I’m attending University (psychology course) in my town. One of the big issues with my parents regards me and my sister’s future. They get me angry because they say that Sabrina should not influence my choices about future and job research. They tell me that I don’t need to worry about my sister because they are looking out for her and planning for her future. They don’t understand that my sister is a piece of me, half of my heart, and I’m not going for any reason to leave her alone. Even when I’ll find a boyfriend, he should have very clear in his mind that my sister is there; he should accept her, love her, because, if not, he will risk losing me too.”
* From ASP, Italy
“In 2006-2007 everything changed in my life: my father died and my mother started suffering from several diseases and she remained bed-bound. The normality of our family turned into a disaster. My sisters and I, we had our own lives. At the end I made my choice, I returned to live with my mother.
Everyday I had to deal with hard problems. I had to learn a new way to communicate with my mother and to understand her needs.
At the beginning my needs became secondary, I was completely focused on my mother’s health condition difficulties and on the management of her life and disease (scheduling the visits with the doctors, buying medicines, etc.). […] Because of my caring role, I based my life on other person’s needs and I had no time for thinking about my own needs and feelings, on the emptiness I felt.
Sometimes I thought that it’s a commitment too big for me; especially during the periods she was in hospital and the doctors told me bad things about her health condition.
During these seven years I’ve been feeling as I was climbing hills and mountains, it has been a very stressful situation for me.
I feel sorry that I’m unable to help my mother in maintaining her social relationships. It’s difficult for me and I do my best to combine my job and my care activity.
At the moment I’m afraid that I’m not capable of handling the situation.”
*From MOVISIE, Netherlands
“There are many examples from Young Adult Carers who are forced to drop out of school or have a lot of catching up to do with their schoolwork. It’s especially hard for them to combine their chores as a carer and their schoolwork. Sometimes they can’t finish their homework or study for an exam. Most of the time the school doesn’t know or understand their home situation.
One girl that we spoke to suddenly lost her mother. She was the oldest child of the family and automatically she was considered to be now responsible for all her younger brothers and sisters.
Her father had to work double shifts to make sure there was enough money and the girl had to take care of all the chores in the house. She had to combine this with her schoolwork and this was impossible for her to do.
Another professional consulted reported seeing that young adults often excel in their achievements at school. Because of their care responsibilities they are very precise in – for example – their homework.”
* From Carers Trust, Scotland
“I care for my young brother who is 11 years old and suffers from epilepsy. I have been my brother’s carer for 6 years, and I am now 20 years old. When I became my brother’s fulltime carer I didn’t know that I was a carer, I just thought it was something that happened and I had to deal with it. Going through school was tough, not having a social life and family issues at home didn’t help either. When I was 14, I joined the young carers group but I didn’t stay with the group and isolated myself from friends and became depressed. I didn’t realise that it was ok, or normal for me to have the amount of stress I had on me from a young age. When I turned 16 my mum left the family home and things became tougher. My depression got more severe and I began to self-harm. I didn’t tell anyone about this because I felt like it was personal to me and it was an outlet from all the stress I had, I only most recently told my doctor about my depression from a young age. At 18, things got harder through Further Education in College, family life and my physical and mental wellbeing it go so bad that I had nightmares and lacked in sleep, I also starved myself because I felt hopeless. I decided to go back to the Young Adult Carers Group and spoke to my support worker who helped me through hell and back. He helped me to open up and talk about my feelings and that it was ok and things are going to get better. Through the support from my worker that gained my trust – I became more independent and more able to take care of myself. I joined a gym and when I turned 20 I became a representative for Scottish Young Adult Carers though the Carers Trust UK team who aim to massively improve the life of Young Adult Carers. I also decided to stay in within Further Education and push myself though into the HNC Social Care to be able to work in my dream job working with young people with mental health issues using my past experience and knowledge.
From the beginning until now, I wouldn’t change a thing because although it has been a hard road it has made me a much stronger, more confident and a self-reliant individual. My life has dramatically improved with support as a Young Adult Carer. If it wasn’t for my brother and my support worker I might well not have been able to continue much further.”
* From Carers Trust, Scotland
“I cared for my mum who had MSA (Multiple System Atrophy), which is a rare and progressive illness; by the end it makes you completely dependent on other people to look after you. My caring responsibilities started when I was 16, I had just started college but was lucky enough to have the help of my dad. My mum’s symptoms had just started and she was beginning to lose her balance and was starting to find it hard to walk. As the illness got worse it got harder and harder and went from having to hold my arm whenever she walked to having to use a wheelchair and then being bed ridden. At the beginning I didn’t think about it at all it was just something I had to do and someone who was a major part of my life was in trouble and I had to be there for her and help her as much as I could. I hadn’t put the carer label on myself yet, which I think is the case for a lot of people. Once I had got to the middle of my college course, though, things changed. My emotions all came crashing down. I have never felt more alone – none of my friends knew what I was going through and they were all still at school. It felt like they were all together and becoming closer without me. My dad isn’t the easiest man to talk about your feelings to – he’s not the best listener in the world and at that point it felt like the person who had always been there for me, my only reliable source of help and understanding, my mum, was only talking to me to ask me to do something for her. She would only get upset if I talked to her about how I was feeling – it was devastating. It felt like I had no one and that I was going to be alone forever. Luckily I had heard about a counselling service at my college and I decided to call them. It felt like my only option. I honestly don’t know what would have happened to me if I hadn’t picked up the phone because it completely changed my life and one of the things that can make you feel happier is to just sit and talk to someone about how you’re feeling. It becomes easier as you get to know the person your talking to. Then we got a visit from our family doctor for mum and she happened to ask me how I was coping. In the end she told me about the local Carers Centre. I had never heard of this and was left pretty confused. I really didn’t know what to expect, she told me it was somewhere where I could go in and have a coffee and a chat. Biggest understatement ever! Nothing could have prepared me for the help and most importantly the support I received and continue to receive to this day. I can honestly say that I have met some of the most important people to me in my life there. I feel that I am who I am today because of the guidance and experiences I have had there. Sadly my mum passed away in 2013 and I miss her everyday but I had and have people to help me through the difficult times that come when you lose someone important to you. I am now 20 and am actually working for the centre as a respite care worker. I’m a completely different person than I was and never thought I would be able to do some of the things I have done, including trekking through several inches of snow in Aviemore, holding a quiz night to raise money for the MSA trust, ‘coming out’ as gay and was even in the paper telling my story all of which was done with the complete support of my group and the amazing staff. I now know that they will be there for me in anything I do. I would urge anyone who is reading this and is feeling like they need support to reach out to whoever is available to you, whether it be at school, college, work or even your local Carers Centre because I can guarantee the it will change your life in the best way possible.”
* From The UPBEET Project, Scotland
“I am a Young Adult Carer from Dundee, Scotland. I care for my dad full time and my mum part time now as I don’t live with her full time. I have been a carer ever since I can remember. I have had a lot of support from The Young Carers Project, I have been in involved in the project since I was about 8. I have also had support from social workers and other organisations. I am now volunteering with Young Carers and hope to become a Youth Worker with them, or an organisation similar to the Carers centre. I have truly benefited from the support of the centre! I have become a more confident, easy going young lady and became more aware of my own ambitions and goals in life. I have had amazing opportunities thanks to the project. My life would not be the same without their help and support! I feel all Carers deserve a system in place to help and support them no matter what their age or circumstance!”
* From ANS, Italy
“My name is Marcella, I’m 30 years old. I grew up with my grandparents because my father was working abroad and my mother left me when I was 1 year old. My aunt had her own family and I had to take care of my grandparents when they felt bad. This is my “caring history”.
Age 24. My grandmother is diagnosed with a kidney failure and she is urgently hospitalized. My aunt is on holiday and my grandfather doesn’t want to stay at home alone. I pay a lady to assist my grandmother during the night and I move my grandfather to my house so he’s not alone. The time is not enough so I decide to ask for some holidays at work to spend more time with grandma. I try to divide myself between my grandmother, my grandfather and the job…it’s really hard. I start to skip meals, I wake up soon in the morning, drive to the hospital for 20 Km, stay a little with my grandmother, go to work, go back to the hospital at lunchtime, go back to work, go back again to the hospital after the work. When I come home at night I feel exhausted. I feel physically ill and I have my first panic attacks.
Age 26. My grandmother goes home 4 months after the hospitalization but every 2/3 months she has to go back to the hospital because of many health problems. Every time she stays there about a month. When she is at home I have several organizational problems. I’m working, I’m caring my grandmother and my grandfather and I take care of their house. I decide to look for help and I hire an elderly care worker even if my aunt doesn’t agree because she thinks it is not necessary. She doesn’t understand the situation. The first 7 months I decide to pay the new careworker with my money but after a while, I realize that it’s not fair. After talking with my grandparents they agree to pay her salary. I can’t stop worrying and many times a day I go to my grandparents’ home to check if they are fine.
Age 27. My grandmother has a stroke, she is now paralyzed on the right side of her body. I’m always with her, every day, every time I leave my job. I’m so tired, I’m always sleepy and, above all, I feel emotionally destroyed.
Age 28. My grandmother dies.
Age 29. My grandfather dies.
Today, the people I meet say that I cared too much for my grandparents. They were my family, I feel I had to take care of them as best as I could, but I feel also sorry because I think I could have done more for them and I can’t forgive myself for many small mistakes I made.
I attended a family carer training course which taught me how to recognize and understand elderly needs. If I had attended it some years ago it would have supported me a lot.
Fortunately in the last years people started talking more more about care issue and especially about burnout, I hope everyone can understand the difficulties of being a young adult carer.”
* From Germany, Laura’s Story: Laura, 26 years old
“My mum suffered a stroke at the age of 47. At this time I was 17 years old and just finished tenth grade at school. Because our parents are divorced, my brother (who is four years older than me) and I had been at home alone for some months, while my mum was in hospital and then in a rehabilitation clinic. After my mum came back home, I became the main carer. The stroke left paralysis of the left arm and leg, and she also sustained cognitive restrictions. I supported her at home because she had to use a wheelchair. My main responsibilities were to help her get in and out of bed and to the shower, take her to the shops and to doctors’ appointments, and to support the household.
There was an assessment for the care level of the health insurance. The health insurance decided on level one care for about one year, which meant that she received approximately €200 per month for treatments or supporting services, but she wasn’t aware of the possibility of receiving external support and wasn’t told about that by the health insurance company. They accepted our wish to get benefits in cash instead of in kind. The assessor did not check my situation and the fact that I was a child taking the whole caring responsibility on my shoulders.
Just after my mum returned from rehab, my brother moved into a students’ hostel. It used to be a great support to me that I had the opportunity to visit him often, and his new home became a duty free island for me. He also motivated me to resume school again. That’s when I started to go for my A-levels, at the age of 18, while I was taking care of my mother. At least I finished my A-levels at the age of 22.
My mother became more and more independent in this period. The role-switching situation between us was a great strain for her. She felt guilty, and was overwhelmed with the paralysis of her arm. Afterwards I think I was overwhelmed with the whole emotional situation too and just tried to work it out, so that my mother had the chance to get along with the situation as well as possible. After a few years, she learnt to manage her disorder herself, but her guilty conscience is still bothering her. Today she lives in a barrier-free apartment, and I live in a shared apartment not far away from hers. As my efforts to find a place to study were unsuccessful, I started an apprenticeship as an occupational therapist.
The relationship between my mother and I at least returned to a healthy mother-daughter relationship again. I took less responsibility for her and we both learned to move back from each other’s life.
Looking back, there wasn’t any hotspot for me to go to, to ask for informational material or mental support at any time, so we had to get along with the situation all by ourselves. It would have been a great support if there was social counselling in school, so I could go there at any time, ask for support or just talk about my situation to relieve some of the pressure.”