Absolutely horrendous situation; pity party here.

[idontknowhowtomanageitall]

I’ll be honest, I’m just feeling really alone and very sorry for myself tonight

In June, DH was diagnosed with stage IV cancer after months of steadily increasing pain. We have a three year old (then two) and a five year old. It’s fair to say I’d always been the ‘default’ parent like a lot of mums I suppose but as DHs pain levels increased I found I was doing more and more.

I am now a carer to DH as well as managing the (very extensive!) needs of two young children and I am absolutely exhausted and burnt out. I have lost my temper twice with the children today because they are so full on. I feel like all day they have just been shouting at me - instant mummy, mummy, mummy. Three year old has started a ‘game’ where she wants me to be her and she is me - this game involves saying ‘mummy you Sophie’ (name changed for privacy although I’m probably very identifiable anyway!) and I reply yes mummy I’m Sophie. That went on for two hours this morning and I was nearly sobbing by the end of it. In between that my five year old has a constant constant CONSTANT barrage of questions ‘who is that? Why is he there? Why’s his coat black? Why’s he got a dog? What’s the dogs name?’ Yes, I can and regularly do ask him to knock it off (obviously in slightly more eloquent language!) but he generally stops for all of thirty seconds and then starts again.

At home I’m on a neverending cycle of putting things away, cooking, keeping on top of the laundry, breaking up squabbles, putting dishes away, getting DH drinks and lunch, getting the children food and drinks, it’s relentless. The children just won’t leave DH alone, he’s in a lot of pain, so it’s generally easier to be out of the house with them but then they get no downtime and I’m aware this affects behaviour.

I know they are suffering too as is DH And I want to be so compassionate and understanding and I am deep down but it’s sometimes buried under this layer of exhaustion and irritation. They are constantly trying to climb on me, lean on me, grab hold of me; I find it so suffocating, especially combined with the endless questions and silliness. The simplest of requests are ignored, like please don’t throw cushions off the sofa onto the floor. I know it takes seconds to pick them up but it feels like they are just trying to be difficult which I know isn’t the case.

I am barely holding it together some days and this is one of them.

Sending you a hug.

That’s so hard OP. Have you posted about this before? It feels familiar. Apologies if not. Do you have any wider family support?

Really sorry for all your going through xxx

That sounds really really tough.
Is there any possibility of respite care - or even a teenager who could occupy them a bit while you get a break?
I used to answer a lot of questions with - because it’s nice.
You also don’t need to play the games your 3 year old wants but I guess the risk is then a massive tantrum.
Can/do the grandparents help out?

Could you employ carers for your husband and a nanny for the children to give yourself a rest, doesn’t have to be long term but at this rate you will burn yourself out.

Oh gosh, so awful for you. Does DH have a Macmillan nurse who might know of any help available? Back to school tomorrow?

I’m sorry you are facing this. It is difficult for you all but I would expect a bit more from your five year old. They should be able to leave your dh alone when at home for some of the time. Have you got any options for childcare so you can take care of you

So sorry Op. You have a lot on your plate: holding the family together and attending to their physical needs, while also dealing with all the emotional needs too; very little time to deal with your own emotions.

Do you have friends or family who could help - even just to take the dc off your hands for a couple of hours? Does your DH have medical / care support ? He may, sadly , qualify for attendance allowance which you could use to pay for some extra childcare perhaps. If he has a Macmillan nurse or some other contact, they may be able to advise.

But mostly, just some long distance support and recognition for all that you have on your plate. 💐for you.

Oh honey. That sounds so hard.

Firstly, it sounds like youvare doing an amazing job in horrendous circumstances. Its okay to feel touched-out. Its totally understandable to snap.

Have you got anyone that can give you some practical help? Are you in a position that you can outsource any of the household stuff/ childcare?

Is your DH on treatment at the moment? If he's in pain - maybe he needs his pain control reviewed - he shouldn't have to deal with pain and you and kids shouldn't havent to see him suffer. Palliative care teams will support complex pain needs, not just end of life care. Does your DH have a specialist nurse team he can contact- they might be able to assist you with some psychological support and should be able to ensure you've maxed out the benefits system (I'm not sure about the rest of the UK but in Scotland there are special funding arrangements and MacMillan grants potentially available.

Sending you all the hugs. Look after yourself

Call in the troops

I’ve been where you are and it’s IMPOSSIBLE!!

you have to use those people who say ‘what can I do to help’. Breaks are the only way to make it possible.

FWIW DH is now 18 years post cancer and I milk my nursing time for every bloody penny now.

Nonsense. I'd have no expectations on 5 year old with a very ill parent.

You're just one person dealing with a really huge and draining load. Cut yourself some slack. I'm so sorry about your DH.
Echoing pp- can you get a break? Childminder? Nursery? Family?

I'm caring for my husband with stage 4. I can't imagine doing that with young kids on top of the emotional side of it all.

You have to get help @idontknowhowtomanageitall put your own oxygen mask on first!

I agree with PP re putting your own oxygen mask on:

what can you outsource (paid - meal delivery service or sinilar, cleaner, babysitter, respite carer etc)
(unpaid - people who say "how can I help?" - give them a job or a shortlist of jobs to pick from.

Wgen DP was in active treatment there were a few friends who sent in a meal a week on a rota system. It was generally something we could feed DC and usually made 2 meals. helped practically + removed some mental load.

Are DH's friends/colleagues/family any help? - to sit with him for the day/help with the kids?

Then you need your support network - you need, say, 20 mins a day that is just for you and a couple of hours a week.

sending you heaps of goodwill.

I'm also f/t care-giver with two young children.
Sending 💛

Use anyone and everyone who has offered to help. Either to take the kids for play dates or to help in the house. If you have any family, draft them in to help. Don't be proud, use any help that you can. I'm sorry that you're going through this.

Well I’ve been in this situation and had a young child - they are old enough to be told to stay downstairs with mum as dad is resting and feeling unwell

For the most part the five year old does know not to climb on DH but will sometimes forget or go barging past and knock into him. The three year old doesn’t understand at all. One massive struggle is trying to get them both to stop messing about with things that DH has got to help him - like the hospital bed (trampoline) various walking aids and so on. I am spending my life telling them put that down, that’s not a toy. Every time it makes me angry and chips away a bit at me.

A lot of replies seem to be suggesting that we’ve been inundated with offers of help and I am afraid this is not the case. People will vaguely say things like ‘you know where I am’ but if you actually ask them for something where they are is nowhere near you! I’m being a bit unfair there but tbh I am not sure what anybody can actually do at this stage, there isn’t really much.

I absolutely haven't been in your situation and I'm so sorry as it sounds like an awful lot to handle.

I'm heavily pregnant and find myself getting irritated at my 4 year old for some of the things you've described like endless questions, kicking/trying to trip me, messing with novelty stuff that's only around because of pregnancy (pregnancy pillow, yoga ball, reclining chair), telling me I'm not allowed to go anywhere because the floor is lava.

Just to say it's totally ok to say you don't want to play that game right now or set a time limit on it so you don't lose your mind! Also set boundaries around real safety issues and give a consequence if necessary (like no climbing on daddy or we'll have to go in another room). Another is also letting them explore the new stuff rather than trying to keep them away (the hospital bed, the walking aids, let them see how they work but ensure they know that daddy needs them and they can't mess with them when they're in use). My son was trying to play with screw drivers and screws today driving my husband insane but I gave him a level to explore instead and he happily carried that around for the rest of the day!

Thanks @ThatMintMember . The problem is it isn’t an ordinary set of circumstances with simple boundaries and consequences. It’s distressing for them being around DH; he’s in a lot of pain and is suffering a great deal with fatigue, partly because of medication and also partly because he is barely sleeping at night. We’re in a cycle of him ignoring children; children up the ante, I step in, it’s not really a ‘consequences’ sort of behaviour. They are confused and anxious and need supporting through this. Removing them to another room would have them trying to charge back ‘daddy!’

Generally with ds if you say no questions please he will comply for around a minute if I am lucky, then start the next round. He’s trying to connect with me but it’s very wearing when my battery is so very low.

What an impossibly hard situation, I’m so sorry.

I wish you were near me; me and my friends would be around to your place like a shot to help out. Does your youngest go to preschool? I mention it because my dc preschool very frequently has young staff who are on work placement or training age 18 or 19 and a lot of them offer very good value babysitting. You could have one regularly at the weekend to help keep the kids amused.

Small children are exhausting - when you start the day frazzled and tired they can be almost unbearable. What would normally be cute and funny becomes irritating.

My heart broke reading everything you’re going through @idontknowhowtomanageitall, in essence your username says it all.

You need an outlet for this (totally warranted) frustration. I suggest asking MN to move this to chat, or health and keep posting as a journal of sorts.

In the absence of the practical help you need from friends which appears to be sorely missing - allow the wonderful members of this forum to help you through this torrid time 💐

She is at preschool but obviously it’s been half term. It’s easier when both are in a routine of sorts. But there’s still an awful lot to manage day to day. Feeling pretty horrible I’ve been so impatient and snappy with them today.

Oh I feel your pain about meaningless questions - oldest DC went through a phase of asking questions like 'Who lives in that house?' 'Why is [place] far away?' and I found a way to get past it and stay calm was 'That question doesn't mean anything so I'm not going to answer it' The fact is there's no answer to those questions, so you're not discouraging normal curiosity or anything, but you are being clear, in a non-aggressive way, that you won't answer things that don't make sense or you can't know.

I know that's kind of the least of your problems, but it's the one thing I have a suggestion for - sending lots of love. 🌺

I’m so sorry, OP.

Do you have anything like a HomeStart or similar charity around who can offer some hands-on support with kids? I’m sorry your friends haven’t been as supportive as hoped either.

Honestly at this point I think you just need to be in survival mode and if that means more TV than you’d usually be comfortable with or using snacks as distractions or whatever then do what is needed.

Does your DH have any support from somewhere like MacMillan? Is there any scope for respite care for him for a couple of days? Ideally when your other two are in childcare too perhaps.

But also I’m conscious that you may not want solutions offered, you just want to be heard and to have it acknowledged that what you’re going through is utterly shit. It is utterly shit. It won’t always be shit but for now it is. It’s nothing you’re doing wrong, it’s not your fault, it’s horrible luck.