Support for DCs facing parent's chronic illness

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I'm a single mum with DCs in early teens. Over the last 9 weeks, I've been very ill (something related to digestive system) and undergoing lots of medical investigations and tests - with no definite answers yet. DCs are really suffering and have absolutely no one to talk to other than me - and I'm struggling now to support them and manage my illness too.

I've asked them several times if they'd like to talk to any other adult about what's happening - which is life-changing for them. They are adamant that they don't want to discuss it with anyone at all. Their school is aware but DCs don't want to talk about it there at all.

So I'm wondering if there are any organisations out there that offer support or online forums for DCs coping with a parent's chronic illness? They are not being my 'carers' at this point, as I'm doing everything I can to carry on all domestic support for them but they're really feeling low - especially one of them who has mild SN. Their worry and fear is coming out as anger against me, which I'm finding hard, although I totally understand why they're being like this.

Where can I get help for them? Are there any online forums for either teens who have chronically ill parents or for the parents themselves, to help me support my DCs through this, whilst also coping with being ill myself?

What's made it all worse recently, is that I thought I was beginning to get better and the DCs were ecstatically happy and relieved - as was I. Then the symptoms got worse again and that few days of happiness has made the recent decline much much harder.

That sounds like a nightmare for all of you. Without knowing the area you live in, could the school or local council help by giving you a contact for them there is bound to be an organisation nearby. What is causing your symptoms, have the doctors given any possible reasons?

Hi Scots - I've had a long long thread going on the General Health section on MN. No definitive results yet although the most recent tests I had, the consultant muttered that he couldn't see any tumours at first glance - so I now think it's less likely it's cancer. However, it could be a number of other life-changing things like ulcerative colitis, Crohn's disease or just even IBS and post viral syndrome.

When I started to feel better, I thought it couldn't be something awful but then when it got worse again, I'm worrying a lot again as are the DCs.

We're in the south UK. I think the school would happily talk to the DCs but DCs keep saying no way do they want to talk to anyone. I'm really not now sure what to do, as I think they need another adult to take them aside and answer questions and reassure them as much as possible - but they've only ever really had me and all their lives have off-loaded on me - and now I'm actually the cause of their problems - and not in the most optimistic state myself. So I'm now sure what to do for the best.

There just isn't anyone else in their lives with any kind of emotional attachment to them or them to another. So it's also hard for them to see a stranger and talk to them, whoever that might be. They barely know their teachers as the school is huge and although they get a named tutor each year, they've barely met them and their current ones are just out of teacher training and just 'finding their feet'. I can't see them being much help.

What about friends? Are they close to any of yours or any of their friends parents? You sound as though you are staying very strong and they are probably coping fine. Teenagers go through stropinesss and anger and don't always need anything to be going on their lives it can be all down to hormones.. with your health, if you have had a scope they will have taken samples from the lining of your stomach or bowel so if he is telling you it doesn't appear to be cancer that's a great sign. Irritable bowel is often diagnosed when no other cause is found but doesn't give as many upper stomach symptoms. Normally pain, cramping, diarrhoea, constipation . Ulcers can be seen and imflamation in the lining so it sounds unusual. Have they given you any meds to try? I still think it would be worth your while sharing your concerns with guidance at school. You can tell them kids don't want input but you are seeing behavioural things that concern you and could they watch out for anything. They don't even need to say you contacted them, it could be a teacher that feels they seem to have a lot on their mind? I hope your situation gets resolved soon. X

Thanks again Scots. I don't have any close friends really and nor do my DCs - the one with SN has none at all. We're all we've got - a threesome, although some school parents have offered to help practically if I need them to do school runs etc - but I don't really know any of them to call real friends.

The consultant was unable to take a proper look at my colon or take biopsies from there because despite being on the loo the entire night with the runs, when I took the prep. for the scopes, apparently, it didn't clear my colon hardly at all. So all the biopsies are from the upper part of my stomach. That's where the consultant said he couldn't visually see any tumours on first glance but I have to wait for another appointment for him to take a better look at anything they recorded and get the CT scan results and the biopsy results.

If it's irritable bowel, then it's far far worse than anyone I've ever met who's had this before, as I've been bed bound at times, with a flu-like feeling worse than any illness I've ever had.

After 9 weeks and loads of medical appointments, I've had diagnosis and no treatment and apart from a brief respite in symptoms, just before the CT scan, not much let up in the symptoms- so it's wearing me out now. The DCs are witnessing all of this and are being adversely affected. The consultant told me to start trying to eat normally again and it was after eating carrots and apple that my symptoms got a lot worse. Have existed on rice and chicken, mostly and water for 9 weeks now and still don't even know if I could take vitamins or probiotics - just told to carry on as I am until I get some answers.

I'm fully self-employed, so this is massively affecting out family income now (no other finances from anywhere or anyone) and DCs are worrying now about money too.

I've kept in email contact with the school and told them the DCs may be distracted at school (and they have a week of exams coming up after half-term and are revising 5 hrs a day all this week). School have said nice things but there's nothing they can really do and it's difficult for the DCs as they're no longer close to any teachers as they might have been when younger and had a class teacher who really knew them.

Doe anyone know if there are there any national organisations for families where there's a chronically ill parent?

Sorry you are going through this.

No experience but young carers maybe?

Lots of different organisations offer things so you'd want to google your area but I found this as a start:

www.barnardos.org.uk/what_we_do/our_work/young_carers.htm

Sorry, should add, I appreciate they are not caring for you as such, but I think young carer groups may help anyway - we looked into them for a while as one of our dc has sn and, although his siblings didn't exactly have caring responsibilities for him, it was still affecting their lives quite a bit. We never did use them in the end but they could be worth a look and, if not suitable, might be able to point you in the right direction for support elsewhere.