After years of caring for others, it can be hard to come to terms with accepting care yourself, especially from your own child. Susan tells her story of parenting through grief, managing the guilt of unexpected role reversals and the transformative effect of Family Action’s support for herself and her son as a young carer.
Caring for a living
For around 20 years I was a carer for a living, working in residential homes, and I loved it.
They tell you not to get attached to people you work with, but it was hard not to like them; they were so independent, and it was amazing to support people to live in their own space.
I felt most sorry for the families of people who had Alzheimer’s and dementia, as they’d be fine for ages and then go downhill so fast – it’s heart-breaking for someone to be fine physically but still have their family lose them; to have them not recognise them.
Caring was all I ever wanted to do and when I left the profession it was to study social work at university as a mature student so I could help more people. So, I guess it’s ironic that I ended up needing to be cared for when all those people relied on me.
“Caring was all I ever wanted to do”
Dealing with loss, grief and pain
It was a gradual thing at first. I just wasn’t feeling well, but I put it down to grief. I’d just lost my mum and I was exhausted – particularly as my marriage was ending and I was caring for two children on my own at the time. I don’t think I coped well with the emotional pain at first as she was always there for me, the one constant in my life, and it hit me hard.
“I’d just lost my mum and I was exhausted…caring for two children on my own.”
So I was tired and sore but then I noticed that when I was getting up in the morning I was so stiff things wouldn’t bend. I was walking like a soldier, and I was thinking “this can’t be right”. I told my GP and she was amazing, sending me right to the rheumatologist for further investigation. They diagnosed me with Fibromyalgia, which felt like an answer to me, but I could tell my GP wasn’t happy with the diagnosis. Sure enough, a year and a half later I was also diagnosed with rheumatoid arthritis. I had to quit university but at that point I could still do things despite the pain.
Chronic pain and frustration
I started noticing I was struggling when my youngest was around 8 or 9 as, although I was still pushing myself to do stuff, it took me longer and I needed more help. I began to rely on the benefits I received, which really helped as sometimes I couldn’t catch a bus, carry the shopping or even get to the hospital for an appointment so I’d need a taxi to take me door to door. The worst thing was not knowing what each day would bring. If I was having a good day, it wouldn’t be such a struggle and I’d get really angry and frustrated thinking of how I was.
“I couldn’t catch a bus, carry the shopping or even get to the hospital for an appointment.”
I would think about how I used to be just a normal person and walk everywhere. Now, it’s tactical. I have to think about everything. I have to think about how to get out, and how long I can go for.
Starting to depend on my son
Sometimes I can barely get out of bed because of the pain so my son, now 13, has a lot more responsibility than other children have. He has learned to take care of himself because I’m literally unable to sometimes.
I can’t stand and cook and if he’s not there I can’t open a jar…
Because of that he’s more independent than my daughter was at 24. When she was born, I was fit and well and healthy and everything got done for her. But my son can basically take care of himself because when I’m poorly I can’t cook for him and do things a normal parent would do for a 13-year-old child.
The emotional cost of being a young carer
He’s learned to take care of himself if needs be, and it takes a lot of pressure off me. But it comes at a cost. He suffers with anxiety about leaving me and he bottles things up. He’ll have a meltdown and that can be quite spectacular, resembling a panic attack, where he can’t breathe. Thankfully he goes to a youth club weekly and is quite close to one of the workers there. He mentioned having to help with mum and she gave him some forms for self-referral for Family Action.
Getting my son support for anxiety
I did consider him a young carer so I had no problem filling it in for him at all because I wanted him to get support, and that’s how the ball got rolling. The worker there gave me a phone call and then came to see us in our home.
She arranged counselling for my son. That has really helped support him to be able to leave me so he can spend time with his friends and blow off steam. In fact, he’ll now ask me if he can go out, which I’m over the moon about.
He’s a popular kid… I know I’m biased, but he’s very loving and caring and he’s got a lot of empathy as well as a lot of charm, so he likes to be with his friends.
Realising it was support for me too
When Family Action’s worker first got in touch, they told me they’d be there for me as well, and that’s been true. I really like and trust her; she’ll ring and say “right, what’s happening” and I’ll start talking and loads comes out – for example, I’ve been able to discuss the guilt I’ve felt over needing my son’s help.
The irony is that he doesn’t mind… I’m the one with all the guilt – He’s like “yeah, whatever”. It’s been like that for him for such a long time now he’s adjusted. Even more ironically, he keeps saying that when he leaves school or college, he wants to be a nurse or a social worker… I guess he’s just really caring and wants to help everybody.
Getting my life back a bit
One thing I didn’t expect is that Family Action would also help me find local activities and classes I can get out to where I can get some female company as, without realising it, I’d been missing out on that because I’d not been going out.
I think anyone who has concerns about their child being a carer should get in touch with Family Action as working with them has helped me with accepting my condition. I’m a tough cookie and, don’t get me wrong, when I was first diagnosed, I think I went through a depression: I was like “what’s my life going to be like from now on” and I cut myself off from a lot of people. I’m in my early 50s, but I always say I’ve got the mind and heart of a 20-year-old and a body of a 90-year-old!
It was only when I adjusted to what was going on with my body that things started to get better – you just need to be kind to yourself and give yourself time to adjust. Because I’m really very lucky: I’ve got a smashing kid and I think because of his responsibilities I’ve had to be honest with him, and it’s brought us closer. He’s my son and I love him, but he’s my best friend too.
“…anyone who has concerns about their child being a carer should get in touch with Family Action”
Find out more about our charity and the difference we make. If you’re worried about a young carer and need support contact our FamilyLine service to help locate the best source of help in your area, as we have several young carers’ services across the country.