“No one knows what life’s like as a carer” – Sharon’s story
For Carers Week, Sharon shares her experience of caring for some of her family members at the same time, one of them being her son who experiences autism and difficulties with his mental health. With the help of Julie from Rethink Mental Illness and a supportive carers group, Sharon has spent the last 20 years keeping her family well.
I started caring over 20 years ago initially for my daughter, but in 2010, my son suffered mental health issues and was also diagnosed with autism. My son was under the Early Intervention team and they were very supportive of us both. When he moved onto adult mental health services, I was supported by Julie from Rethink Mental Illness. I don’t know how I would’ve managed without Julie. She’s seen me monthly and has been so supportive and understanding of my son’s issues. In 2010, my husband had a work related accident and a heart attack, needing a quadruple heart bypass. My mother also had a stroke, so I had to juggle caring for four.
Mental ill health is the hardest to deal with. It’s very draining trying to keep upbeat and positive, when the person who’s being cared for is depressive and negative. After several inpatient stays, my son found a placement in a local Mind. Before this, my son had self-harmed on several occasions, and I had to sit with him all night in the hospital to be seen the next morning. In the early days, when sorting out his medication, there were times when he couldn’t dress or feed himself. He was in a zombie-like state. Because of his self-harm, we were always flagged when needing emergency services. On one occasion, when my son was sectioned, we had 19 policemen and paramedics surrounding our house.
The government and people in general don't realise what it’s like being a carer.
You feel guilt because of this. No one knows what life’s like as a carer, unless they’ve walked in your shoes. Many people are ignorant of how mental illness affects the person suffering, but also the people who have to deal with it every day.
Initially, I didn't think of myself as a carer. I didn't know anything about Carer’s Allowance or any benefits, until I became a postmistress. People I knew were claiming to look after their children and getting all sorts of benefits. I didn't really think any more about it, until we had an appointment with a paediatrician. She asked me what benefits I was getting for my daughter and myself. I told her I wasn't on any and she told me what we’d be entitled to. But it's my daughter! No, she said, you’re an unpaid carer and your daughter is entitled to DLA (Disability Living Allowance). You must get assessed.
I used to go to a carers group and did a ‘Caring With Confidence’ course, where I made some friends. We went on to become the Gang of Four. I stopped going when my caring responsibilities expanded, but I still keep in touch with two friends from the gang on social media. I have a brilliant friend who is also a carer. She obviously understands the issues carers have.
I’ve had to fight to get what is needed for the people I care for.
The government and people in general don't realise what it’s like being a carer. I only get one lot of Carer’s Allowance, even though I care for three adults. I don't get any relief for my glasses or dental work. I don't think what’s involved in being a carer is appreciated. It's not just the hands on care, it's the admin; dealing with finances and juggling everyday issues.
My son and husband feel guilty that I have to care for them. My daughter doesn't know any different, but I wouldn't change a thing. Through caring, I've met some tremendous people and made some genuine friends. Caring has changed me and my life. I had to give up my job to be a full-time, non-paid carer. I’ve had to fight to get what is needed for the people I care for. Follow your gut, rather than just accepting what you’ve been told. Keep on fighting as no-one else will.
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