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Talk about young carers

Hi everyone! We are (clockwise from the top left) Susannah, Tina, Ewan and Sam, and we’re all qualified social, youth or community workers, who run the online communities and help services for Carers Trust.
Unpaid/family carers can be any age, from 5 to 95—but as it’s Scope’s Sibling Week this week, we’re here to talk mainly about young carers. We can answer your questions about what's available for young carers, how best to support them, and what we've learned from working with them for ten years! We’ll be checking your questions every day this week, and will reply as soon as we can. Lots of interesting issues, so fire away!
Unpaid/family carers can be any age, from 5 to 95—but as it’s Scope’s Sibling Week this week, we’re here to talk mainly about young carers. We can answer your questions about what's available for young carers, how best to support them, and what we've learned from working with them for ten years! We’ll be checking your questions every day this week, and will reply as soon as we can. Lots of interesting issues, so fire away!
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Replies
Thanks for getting the discussion started!
Great to hear from you; you are of course absolutely right that siblings aren't necessarily all children. And in fact, this kind of scenario is something we hear often from people of all ages: "I want to know what's going on and be involved, but they don't want to worry/burden me." One approach that people have often found helpful is to emphasise the fact that, as a family member who cares about the people involved, there is no way you could *not* be concerned. So, there really is nothing to shelter you from that you're not already thinking about. But letting you get involved would reduce the feelings of mystery or lack of control, so would actually make you more able to relax.
On a more practical note, it might also be worth looking at this from the point of view of your parents' needs as carers. It sounds as though things have changed recently, at least in terms of your getting power of attorney, so it might be a good time to look again at the situation and what support would help them to manage during the times when your brother is at home. Your local council has a duty to assess carers' needs—and, these days, it's generally accepted that the best long-term solutions would take into account the whole situation and all the people around. So it needn't be framed as your taking on a burden, but simply collecting all the relevant factors and people together so the best decision is made.
Finally, if you haven't already, you might like to get in touch with one of our Network Partners, services who support carers in local areas around the country. They're generally independent charities and there would be no problem at all about working out who is the 'main' carer; anyone's free to get in touch for some informal advice. You can find your nearest one at
http://www.carers.org/carers-services/find-your-local-service .
Hope that's given you a few things to think about - good luck!
Ewan.
Great question! Respite is so important. Having time to relax and do something nice for themselves can help your parents recharge their batteries and come back refreshed. How lovely that you are asking on their behalf. I’m sure they appreciate it! But don’t forget yourself either, make sure you’ll have enough time for yourself, your hobbies, friends and school.
There are several ways of accessing respite opportunities.
If your parents have a Carer’s Assessment, they might be able to get respite care through the local authority. If your parents haven’t been assessed by a social worker yet, then we’d suggest they contact your local authority’s social services department about it. It’s really key to get this assessment as there might be support available to your parents (or indeed your whole family) that they are not aware of.
Additionally, if your siblings have a social worker they may have already been an assessment done which should ideally include the needs of the whole family. If that is so, then it would be good to speak to that social worker about respite, too.
Your parents could contact one of our local Network Partners. As mentioned in one of our other posts, you can search for them here http://www.carers.org/carers-services/find-your-local-service. Not all local carers services are affiliated with our charity, Carers Trust, so if you cannot find one near you via our search facility, there might still be one that is not part of our network. To check if there’s one, do an online search for 'carers' and the area/town/county you live in.
Staff at local carers services may know of local organisations that offer respite breaks to parent carers or carers in general and could get them in touch with them. Or they may offer respite services themselves. You’ll find out more once you’ve found their contact details and can speak to them.
The National Autistic Society might be able to help with breaks away from home as you can see here http://www.autism.org.uk/Our-services/Residential-community-and-social-support/Short-breaks-and-respite-services.aspx . Perhaps your parents could give them a call on 0808 800 4104 or visit their nearest local support centre (http://www.autism.org.uk/directory.aspx)
Remember respite is not only about going away for a short or long break but it could just as well be about having a few free hours each week. Perhaps there are some groups or activities in your area which your siblings could get involved in, which in turn would give your parents some free time. And are there family members or friends who could help out now and then to relieve your parents from some tasks?
I hope this gives you an idea of who to contact and what to do to get the ball rolling. Would be great if your parents got some time to relax.
Tina
Judging from what you wrote, it sounds to me like you’re already on the right track, considering both your sons’ needs and looking for advice early.
Many parents/carers find it really helpful to speak to others who are in a similar situation or have experienced similar problems. It helps to know that you’re not alone with this, and talking to people who understand is a blessing on days when you need to rant or are looking for some emotional support. You’ve already found Scope’s online community – great! Perhaps you’d also like to see if there are parent carers in your local area. You could contact one of our local Network Partners to get in touch with others (search for your nearest here http://www.carers.org/carers-services/find-your-local-service). If there’s none in your postcode area, there might still be a carers’ service that’s not part of the Carers Trust network. To check if there’s one, do an online search for 'carers' and the area/town/county you live in.
Something we hear from many young carers is that it’s very important to them that they are involved in and informed of what’s going on. (There’s a great little post from EllaB explaining it here https://community.scope.org.uk/tip/27289/we-want-to-help-too). Of course, if possible, the amount and the details of that should be age-appropriate and suitable for the individual child.
Children are curious. If your son asks about his brother then talk to him about it, help him understand. Perhaps you’ll even be able to find a book or a video for children that explains what cerebral palsy is which you can look at together to help you talk about it.
Show your son that he is allowed to express his feelings and talk to you openly about them.
Set aside some time to spend with your youngest son on his own. It’s important for him to have your full attention, and it’s important for you, too, to know that you can give him that attention.
Everyone needs people outside the family who they can talk to. Sometimes it’s easier to discuss certain feelings or thoughts with those not immediately involved. When your son is a bit older, he might like to speak to others who go through the same as he does. Perhaps he’d like to talk to other sibling carers or support staff on Sibs http://www.youngsibs.org.uk/ or maybe he’d like to find support at his local young carers service. He would also be very welcome in our online community for young carers.
Actually, there’s some excellent advice for parents on the Sibs website. Do take a look here http://sibs.org.uk/parents. It may answer a lot of your questions (and lots of not yet formed questions perhaps!).
I hope this helps,
Tina
https://babble.carers.org email: [email protected] (for young carers, aged up to 18)
www.matter.carers.org email: [email protected] (for young adult carers, aged 16-25)
www.carers.org email: [email protected] (for carers aged 18 and over)