What do you do when you feel you can't do this any more?

[BobinogBobbleHat]

Not sure if this is in the right place but...

I'm in hospital with DD at the moment; it's her fourth admission for a general anaesthetic this year. She's got fairly complex health stuff going on; her first two years were a whirlwind of hospital admissions, surgery and illness.

She's in her teens now and things are much calmer than they were, but I feel like I cope less well than I did. In the early days, I was a SAHM, and my only job really was to deal with DD and DS (who also has health issues). I took most of it in my stride - although there was a slightly scary cardiac surgery...

Now I work again, both me and DH four days a week which means that we both take on some of the load and he is a fantastic husband and dad - this definitely isn't about him not doing his bit. (I usually do the inpatient stays as it's easier for me to take time off than DH, and I think it's fair enough that DD wants her mum at these times).

Now we're in hospital I've gone into what DH calls 'highly capable medical mother' mode and am fine, but running up to this admission I've been really anxious and tired and just feeling like we can't keep doing this.

But we are going to have to. So what do I do to feel better?

At the moment my main tactic is reminding myself that once we get going I'll be fine and that a lot of the anxiety is also related to perimenopause. But even that (briskly practical self-talk) is pretty knackering.

You sound close to burn out. Can you afford a counsellor for yourself?

I have considered that. Not sure how to go about finding someone. I work for the NHS so there is a wellbeing service but not sure if it's the right sort of thing.

DD just back from theatre so replies might be a bit sparse now!

Having a child or children with health issues is hard. But the person who is really suffering is the kids themselves. So, for the sake of them, as a parent, I think I have to be strong.
But that doesn't mean you can't have place for you to have some help yourself. I also think you are about to burn out. You need help yourself, to be there for your dc.

Your employee support set up will likely offer you a series of counselling appointments.

Depending on your daughter's medical conditions, there might be support networks for parents on Facebook and the like who could signpost you for targeted support?

Now she's a teenager, are you at the hospital 24/7 or are you leaving to rest a bit while she's in the care of the staff? If you're not leaving, could you take an afternoon off to get a break - get a friend to sit in with her, alternate with her Dad - share the load a bit more?

It’s so hard, mothering a child with health issues. You need ‘mothering’ yourself, whatever that looks like for you - eg talk to your kindest loved ones, or see a counsellor or call the Samaritans. Say all the fears out loud, it helps.

Also exercise, fresh air, fruit & veg, having a laugh, dancing - all the basic things really are effective, so hard to do when you’re up against it and obv you’re v limited while in hospital, I’m thinking about increasing/maintaining your resilience longer term.

I hope your daughter’s recovering quickly from this latest op. Good luck, you’re doing really important work.

Oh and if you need to, talk to your GP about a sicknote and take the time you need to come back stronger.

Mostly SEN rather then medical here, my DC have SEN, I have a debilitating chronic illness. I don't know really, I'm way past the point where I first thought I'd break. I cry and I panic and I feel hopeless and then I pick myself up and I go on, because the alternative is my DC fall through the cracks, they get broken. So far I've managed to find a way through and go on long after I thought I could. I've spoken to a friend in a similar situation and we both feel we've surprised ourselves with what we can cope with and to some extent it's the fact we have no other options. Her Ex isn't allowed to see DC because of DV, my STBXH isn't quite as bad, but he'll never be someone that can step in and take over. Not having a choice and having a strong motivating reason can help in my Friend and my experience.

You definitely need to be talking to someone. Start with accessing talking therapy via whatever system your GP practice offers.

Talking doesn't take the problems away but it does help to keep us in balance a bit.

Thanks everyone. I think this might be the push I need to be a bit more proactive about seeking support rather than moving on from this admission and being fine until the next one!

Now she's a teenager, are you at the hospital 24/7 or are you leaving to rest a bit while she's in the care of the staff? If you're not leaving, could you take an afternoon off to get a break - get a friend to sit in with her, alternate with her Dad - share the load a bit more?

We are two hours from home, so swapping around isn't an option sadly. Also DD does have SEN and is deaf so needs someone with her to support her communication. Generally I can nip off for a shower or to Costa if the staff are able to help. It's manic today though. Hoping for home later but will see how we go. Just a short one this time.

'highly capable medical mother' mode. What a great term. I completely recognise that. We can operate at that level for ages. But if something goes wrong with another child I am a mess and have minimal coping mechanism and high anxiety.
I do often wonder if there will be a comedown after functioning in this mode for so long. And ptsd. I wonder if that's what it is op?
Do you have the support of a local hospice. Or community nurse? They should be able to signpost you to help.
Well done for recognising you need help. I know info but not ready to ask yet.

Not sure if this would be feasible but might help:do you have help in the home? A cleaner? Might just lighten the mental load

I do often wonder if there will be a comedown after functioning in this mode for so long. And ptsd. I wonder if that's what it is op?

I think about that too. When DD was little, friends used to joke that surely I couldn't keep this up for long, and one day I would surely lose it in spectacular fashion. I keep sort of waiting for that but also absolutely recognise what a PP said about having no alternative to how things are. Whenever people say things like 'i don't know how you cope with it all'; I just think 'well I do. I don't have a choice; no-one else is going to do this for us so on we go'.

But I do think now that this isn't sustainable. I wonder if although now DH and I are able to share the load more, I am starting to feel those years of it being mostly me.

And I am grateful for everyone on this thread because my usual MO would absolutely be to get home from hospital, think 'well that wasn't so bad after all', and power through till next time. Until, presumably I can't power through any more. It's given me the kick to take notice of how I am rather than just marching on.

Thanks.

(We're home although possibly should have been kept another night as she's not been great today. But hopefully tomorrow will be better.)

I know exactly how you feel, DS is 14 and disabled. He's needed some massive surgery this year and we seem to have an endless cycle of hospital stays due to cyclical vomiting syndrome (a migraine variant) last year we had a 5 week stay and I was on my knees after 4, so my mum stepped in for the last week. DH was caring for other DD. We all had energy and optimism in the early years, but time has just ground us down. It seems one thing after another. We are all exhausted

Not much advice but just wanted to reassure that we have the same feelings. I think there is an element of retraumatisation (made up word) each time you go into hospital, from scary admissions before. The horrible loneliness of being the only one who can support them through treatment. The fact that this might be forever (the alternative being your child is no longer here).

Things that have made it better for me - acknowledging that this is shit for me as well as my child. Telling people how shit it all is rather than pretending it's ok. Not catastrophising whilst in hospital if possible. Meeting up with friends as much as possible before and after admissions.
Not sure what your daughter's condition is, but apparently Rainbow trust support workers can be amazing at building relationships with the child so you don't feel bad about having a bloody break.