Parents of chronically/terminally ill children

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How do you keep it together? Do you inevitably have to take medication?
Dd's prognosis is not great and we had a very tough meeting with her consultant this week, after which I just wept uncontrollably for hours. I've now had some CBD oil which seems to have helped, but I'm still not feeling like there is much I can cope with and I'm dreading having to speak to anyone outside the hospital.
Having never questioned my mental health before, I now wonder if I should see a GP.

Firstly I'm am so so sorry your are going through this. Would you like to talk more on here as that could help?

Secondly I would imagine everything you are feeling is normal at an absolutely awful time.
I would still see your GP to be monitored and supported.

That is kind, thank you. I genuinely don't need to go over the details, we have plenty of support for the medical team. I just wonder how some parents do it long term, and if medication is the only answer.

My DS wasn't terminally ill, however had treatment for a brain tumour. I was fine for the first 4/5 months then it hit me and I cried for days.

My friend took me to the doctor who said that I'd obviously put on a brave face ( DH wasn't as strong as me so I had to be the brave one) and now the emotion was too strong. It had to come out eventually !

I was given sertraline and put forward for CBT, however I didn't like either so in the end I tried going down the dealing with my well being. So I made sure every week I had time out, if DS was well enough to go to school I'd go shopping/ sit in a cafe etc. It made all the difference. I wasn't 100% right until he finished treatment but it has slowly got better ( now a year post chemo )

I'm not sure I'm the type of parent your looking for but I have a dd with a life limiting genetic condition. We've had some really rough times but fortunately at the moment she is doing incredibly well but I'm very aware that could change at any moment. She's in high school now and I remember when she was a baby and I didn't know if she would even live long enough to go to primary school. It's incredibly stressful knowing she could go down hill at any time and there is nothing I can really do about it. I look back over the years and wonder how I coped and kept going. Looking back to periods when she was unwell (I say unwell because it's a hidden disease so when she is 'well' her life can be fairly normal) I think there were times where I probably should have got medication to get through it. I suppose I knew my dd need me to show her strength so I had no option but to cope if that makes sense, even if inside I didn't feel like I was coping. Faking it seemed to get me through.
If you are feeling like you can't cope with much more I would see your gp. Do you know any other parents with children tha have the same condition as your child? I joined Internet groups to talk to other parents which I found massively helpful. Talking to people who understood what we are living through and coping with helped me.
Sending you heaps of strength op

namenumber may well be the same condition.... dd has done fairly well but has deteriorated a lot in the last year. I actually find talking to other parents dealing with the same condition quite hard - don't want to depress the ones who are doing ok and terrified to hear from the ones who aren't!

I don't have a child in this scenario but I do have two severely dsabled children and I went for many years without medication despite feeling awful and having panic attacks and all sorts. I felt very much that I wasn't ill and therefore meds would be wrong. I recently started anti depressants and do feel much better. Life is always going to be difficult for us and I have started to feel that the tablets take the edge off it generally. I would definitely consider medication in your position.

I have a child with quite possibly the same condition as you and a pp are talking about. He's not well with it at all and today I'm having 'that' conversation with the consultant about where we are and the next steps.

I only cope by knowing absolutely everything, I research and research and ask every question that comes into my head and then re ask if I don't understand it fully. Knowledge is power to me, not the power to make him better but to understand what the drs are saying in depth and knowing what to expect helps me. I know this isn't the same for everyone.

If you want to have a chat in private, please PM me, having people who know what you're going through helps.
If you feel you need medication then take it, do what you need to get you through and be the strongest person you can. It's fine to fall apart too though and never be ashamed of that.
That we go through is tougher than anyone can imagine.

I just reread the bit about other parents, not wanting to scare those starting out and being afraid of finding out the future for those in the further along stages.
I know that, I've have new diagnosis parents actively recoil away from me before, it sounds like we're in a similar place though so please don't feel like you can't make contact if you want.

I made a woman cry at the last parents' meeting I went to. She asked how dd was and when I told her ( without thinking) she ran out of the room in tears. I felt awful for being so thoughtless. :(
titsalina yes, I have seen you on CF threads. I too spend endless amounts of time reading research.... and if anyone else asks me when dd is getting the new wonder drug that's on the news, I may punch them in the face

I know that feeling, they make it seem so simple, "when is DS getting Orkambi?" And "Can't just jut move to a country that does?" As if it's that easy.

We're in RBH if that is you're centre too then maybe we'll see each other one admission, we're here alot.
Does your child have the relevant mutations for Orkambi? Most people outside the cf world don't realise it can't just be given to everyone.

We're in RBHSC, far away from you and even closer to a country that has Orkambi.
Dd has one DF508 and another v unusual but severe mutation - they think Orkambi or Symdeco would be great for her and even mentioned getting on a Symdeko trial but that hasn't happened :(

Oh no, so they dangled it in front of you and then haven't delivered. We had the same this week, FEV1 went down to 38% and they said Orkambi would be possible through compassionate grounds, they did all be pre tests and then have said it now won't be possible. I wish they'd never told me it was in the first place!
The most common thing I've have recently is people saying they hadn't realised just how sick DS is because he looks normal.

That's so cruel Titsalina

Yes we are talking about the same condition. My dd has cf. Can totally understand what you mean about talking to other parents who's kids are better/worse. So isolating being a parent of a child with cf.

Oh Titsalina, that is so cruel. I'm aware of how fortunate we are at the moment with my dd being well. But it's so frustrating and heartbreaking knowing there is medication available that we just can't get access to.

Would any of you be interested on a long running CF thread for support? There used to be one but it got very quiet and became a zombie thread.
I find when I'm chattering away about x/y/z medication or treatment to friends they humour me by listening but they have no clue what I'm taking about.

Sure, let's give it a go :)