Support for long term chronic illness

njs030

Hi, does anyone know if there is some kind of support for children with chronic illnesses?
My daughter is 15 and has a chronic illness which means she is very housebound, it's quite rare so id prefer not to name it.
None of my family in the area are interested- it's got to the point where I'm almost begging people to visit her and still they don't care.....in fact I'm getting comments back about how I'm using her as emotional blackmail, and how she should text them herself and it's like they look down on me for asking for support!
It's got to the point where I'm genuinely worried about her mental health. There's just the two of us and we are stuck together 24/7.
So I'm hoping someone knows of some kind of group that can offer help.
Thanks

Dizzyblonde

I really feel for you and for your daughter. Sadly, people tend to shy away from chronic illness and after a while visits and offers of help dry up.

I presume you've tried to find a support group here in Ireland? If there aren't any, have you looked for support groups online? They can be invaluable, and your daughter might meet others of her own generation who have the same or a similar condition. It's always good to be on contact with people who are in the same boat s you, you can share coping tips and give each other support.

njs030

Dizzyblonde wrote: »

I really feel for you and for your daughter. Sadly, people tend to shy away from chronic illness and after a while visits and offers of help dry up.

I presume you've tried to find a support group here in Ireland? If there aren't any, have you looked for support groups online? They can be invaluable, and your daughter might meet others of her own generation who have the same or a similar condition. It's always good to be on contact with people who are in the same boat s you, you can share coping tips and give each other support.

Thanks so much for your reply. Yes we (well I) have found support groups online and have people to chat with. However she doesn't like them as she feels it's all people complaining and trying to be the worse off!!
It was more face-to-face is was thinking of, if there was any groups or places that provide community support for youngsters.
It's probably a bit of a silly thing to be asking about as I'd probably already know

Dizzyblonde

Your local health centre might be able to help - you'd like to think there would be something available.
I hope you find it

echo beach

notjustsweet wrote: »

It's got to the point where I'm genuinely worried about her mental health. There's just the two of us and we are stuck together 24/7.

I don't know who might be able to support your daughter, apart from the suggestion you have already got to inquire at your local health centre or at the hospital treating her, but you might benefit from talking to the Carer's Association. This situation obviously isn't easy for you either and somebody else in the same situation might be able to support you. It sounds as if family and friends aren't much help and may even be making matters worse. It won't help your daughter if you get ill too.

Frito

I don't know if foroige might be able to help you, they're the national youth development organisation. From their site they seem to run groups and activities which may not be suitable for your daughter but they might run an outreach programme or be able to link you with more appropriate support.

kilp10

Maybe see if there's a local Red Cross in your area as they would often do community visits and might even have a youth group. Tough situation for you both.

njs030

Thank you all for the replies, we finally convinced our gp to make a referral to the public health nurse who is going to organise some help and support including counselling help for my daughter.

Thanks again for taking the time to reply, it really meant a lot to me and I'll be investigating all of your suggestions.

Dizzyblonde

That's great news, I'm glad you and your daughter are going to get some support. Chronic illness is especially hard on the young and those who care for them.