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.

It isn’t so much that people aren’t supportive, it’s just well … what can anyone really do? I can’t expect people to stop work or to prioritise my children over theirs. But there’s very little anyone can actually do.

You sound like such a lovely, understanding mum, in tune with your children and how anxious they might be underneath. Mine used to behave like this when they were inwardly anxious about something, I remember the relentless questions.

I am guessing you have acknowledged the feeling..worried about daddy...child friendly explanation of what is going on, so far as possible,or had some support to communicate this to the children?

You are doing amazingly. You really are, don't beat yourself up over little things. They will remember your presence (2 hours of role play?!) and the love and care you showed their dad. You can do an hour of playing and questions max, and then a film -- even if you watch with them you can switch off a bit.

Sending strength.

Can your DH get better pain meds it doesn't sound right that he is in constant pain. Then could he cuddle DCs to help with the clinginess while still resting?

Please ask the health visitor to help you access support- there may be some, in this difficult situation.

For the children’s behaviour, I find making everything a silly game diffuses it somehow.

So answering every question with food- why? Fish and chips! Play mummy! Sausages! It’s random, but switches the dynamic somehow.

With the climbing and attention seeking from DH, do something distracting and really silly- stick a tea towel on your head and make ghost arms, or declare a hugging contest- whoever hugs you longest wins.

really useful games to play generally- stop/start, sleeping lions, freeze, Simon says… they teach children to listen and follow instructions.

We’d do them on the school walk- instruct, run/hop/baby steps/ sssssstop! Then do lots of false alarms, sssocks, sssausage, ssstop!

Old fashioned, but really useful.

I’ve not been in your situation, it must be so bloody hard.

Is DC1 back in School tomorrow? Are they receiving any support at all?

I can’t imagine how tough this must be for you and doubly difficult if you don’t have family or friends to rely on. I hope you can use this thread to vent

That’s very kind of you @Anna20MFG , I don’t feel like I’ve been very lovely today I am really burned out with them and lost my temper twice, once in the car on the way back from a national trust place and once just before bath time where they just kept screaming where are you, where are you even though they knew full well where I was.

@WitsEndFFS youngest is three, no HV. I do find as much as people mean well there is no support out there … you get given some leaflets, that’s it.

I’ll be honest here; I really don’t want to encourage further stupid behaviour as I’m already really struggling with that at the moment. It’s tiresome as hell. Normal I know but unbelievably irritating and puts me on edge.

This👆👆👆Plus don’t avoid convenience food and the children can sit in front of a screen for a while to help your sanity!!

Just wanted to send you a hug, OP. 💐

I hope this doesn't sound creepy - but roughly where are you in the country? Perhaps some of us actually could offer practical help.

I was going to ask the same question but didn't want you to think strangers on the internet were being creepy but I would 100% pop around with my kids for a playdate to keep them all busy for an hour or two while you catch your breath - East Midlands.

Sending love.

I echo asking for help. Local people "can you take X for an hour?". I'd have your children for a week to let you recharge. Would someone cleaning/cooking/babysitting help? An hour or so to yourself daily might be enough.

(Some of what you're describing is totally normal irritating as fuck 5&3yo behaviour. They will get better with age).

Further away people can be emotional support. Ask to phone and let off steam. Be clear you don't want solutions, you just want to moan. That's OK.

Kindly, is your dh able to engage with the dc?
Could you try teaching them about all the medical supplies? My two are 5/under and help me take medical supplies (they carry saline syringes for ex) when I set up and administer my mum's daily iv's. They know everything I'm doing and what things are called. Could you also take pictures of the kids with your dh cuddling, lying together, etc?
Sending support. I'm there, too.

Do you have any grandparents that could babysit/give you a break for a couple of hours? Or siblings from either you or husband? I just wonder that if you can find it in yourself to ask people may well surprise you and lend a hand, even if just with the children. I know I would if I had a friend going through something like you guys are. Any available clubs nearby or child care if have the dosh?

Please cut yourself some slack too. Your children won't remember being shouted at occasionally, it won't harm them. You're doing ok, honestly, with everything going on. Am so sorry about your husband, bloody horrible disease. Please though, don't be afraid to take people up on their offer.

Ah OP, this sounds so tough. Sending hugs and strength.,

Be kinder to yourself. Lower your standards and give them some more screen time for breaks, be honest with them when you need 5 minutes. I’m so sorry for all you’re going through- I do both these without your challenges xx

Does your DH have a cancer nurse? There should be a team at the hospital. They are there for the family too. Maybe they can suggest something (sorry if you have already tried this)
Is there a Maggie’s near you?

I'm sorry to ask this but is the prognosis terminal?

If so then he is automatically entitled to the higher rate of attendance allowance which is significant and will pay for cleaning, child care, holiday clubs, whatever you need up to around £114 per week, so that will take a significant load off your shoulders.

Your cancer support team at the hospital can help with the application, or Macmillan nurses

Gosh you poor woman. It is hard enough having 2 small children let alone having DH to care for, and worry about.
Do you go to church? Even if you don't there will be people at your local one who might help. I know we would, even for someone not currently in the congregation. Go to a service with the children and chat afterwards (also it's somewhere warm and dry and out the house often with organised children's activities in the Sunday school). I don't necessarily mean as childcare with people you don't know, but maybe a older lady who'll pop by for a few hours on a weekend to play with the children, help fetch everyone drinks and food, and take the pressure off you. Or, pay for a mother's help who does this. Like a granny would, presuming you haven't got a handy one or you would've said.

I have been a carer and my GP surgery contacted me about a Carer's assessment. I didn't need anything so I declined. Maybe you can contact your GP and find out what may be available? Don't be hard on yourself, there's a lot in your plate and finding a little assistance may help.

You sound unbelievably compassionate and amazing parent and wife. I think I remember another thread from you, so I feel I need to emphasise what an amazing wife and just general person you are.

There are times in life where it it is just a pure slog but even by those standards things are extremely hard for you at the moment.

I can only send you kind words and wishes that things will steadily become more manageable in time for you.

Any ropes than need dropping do, any offers of help even loose ones try to firm up on them. A cooked meal here or there could really save you effort. A baby sitting session or two could give you some space. Have you any carers coming in for your DH? Have you met a palliative team? Anything that gives the smallest bit of breathing space at all. Xx

Maybe reach out to the pastor to see if they could solicit that?

Oh @idontknowhowtomanageitall. This sounds so incredibly difficult, no wonder you feel like you do.

You sound understandably overwhelmed and burnt out. Can you speak to MacMillan and see if there is any advice they can give? They maybe able to signpost you to support for your family that you’re not aware of.

From a stranger on the internet, sending you love and strength. Life really can be awful sometimes. ❤️

I'm so sorry OP you sound like an amazing mum who is doing her absolute best. I would ring the Macmillan helpline and get them to support you with claiming anything your dh is entitled to. PIP is the obvious one. It will help if you can throw some money at a cleaner/laundry/decent ready meals etc. They're really good.

Cross post with previous poster.

You are one of the people who should be geting PIP. Please claim it and make sure you ask for help when you need it. Where do you live?