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.

OP, I’m so sorry you’re all going through this. I sense from your replies that you’re not really looking for practical advice, not because it’s not helpful (you’ve had some fantastic replies) but because you’re at the absolute end of your tether and you have 0 capacity to take on anything new. Entirely understandable. I won’t make loads of new suggestions. All I’d say is that one very low effort help might be increasing your youngest’s pre school days from 3 to 4 for now. It just buys you a bit of extra breathing space in term time and should take one email / conversation.

If I was going to do one other thing, it would be to integrate a CM / nanny into your family life as a previous poster suggested. That likely sounds like a big task so all you do for now is send a message to local friends asking if they have recommendations or post on a local FB group. Our current CM / nanny was found that way and is a God send with no local family support.

NHS CHC is very difficult to secure. A diagnosis of stage 4 cancer wouldn’t be enough on its own. DH would be assessed for a primary health need, meaning the main need for care is health-related, rather than simply social or domestic care. The assessment focuses on the intensity and complexity of medical treatments, ongoing nursing care, high-risk symptoms, or unpredictable physical needs. DH would be evaluated on things like breathing, nutrition, medication, psychological needs, etc.

If his condition is rapidly deteriorating and it’s determined he is approaching end of life then there is a fast track system which bypasses the assessment and this can be initiated by a HCP involved in DH’s care, so it may be useful for OP to talk to them. I remember OP’s original thread and it’s a very difficult situation.

This is insane. DH needs a lock on his door, if he has that then there's no need to lock up the kids anywhere!

Sorry to hear this.

You are doing the best you can in an awful set of circumstances. Most people would get overwhelmed and snap if they were in your situation.

💐

I can understand all this OP.

It is very hard.

At least the dc sound chirpy, if exhausting, which suggests you are probably doing a much better job than you feel you are. 🌷

This is awful and unacceptable that you are struggling with all this on your own. Your children will maybe be able to see this retrospectively one day, but that is no use to you now. I remember the relentlessness of young children and the endless mind numbing imaginary games, and I wasn't nursing a terminally ill partner. Would hospice care be more appropriate for you DH now? At least as other posters have suggested, respite? Does your husband qualify for Self directed payments to buy in care ? (I am in Scotland so might be different here.) Are social services aware of your situation? Could you make an appointment to speak to CAB to find out what help you could get? Please, please don't be hard on yourself. You are doing your best in an situation that would overwhelm anyone.Sending strength and love.

OP I hear that you're not wanting practical suggestions. Just wanted to mention that I know someone who had a lovely home-start volunteer who gave a lot of emotional support and not just practical. And you can ask friends for moral support as well as practical. I realise it's hard to ask for and organise these things when you're already at breaking point. But something to think about when you've had a few days to recover from half term.

Yes there are a lot of teens struggling to get jobs at the moment so I'm sure you would be inundated with offers from teens happy to accept the £8 per hour for under 18s. My 16 yr old would gladly help out with childcare and cleaning on a weekend and one evening.

I'm so sorry for what you're going through @idontknowhowtomanageitall

It is so difficult being the only adult with capacity to deal with everything having small kids entails on top of everything your DH is going through.

I hope that back to school will at least alleviate some of the constant chatter and maybe give you some brain space.

Sending you hugs - absolutely anyone in your shoes would be struggling - be kind to yourself.

So sorry youre going through this OP. What an impossibly hard and heartbreaking situation.

Are there any groups out there for support n solidarity with others going through similar?

Your kids are at demanding ages and youre going through one of the worst things someone can go through, no wonder you're feeling this way.

Please be extremely kind to yourself.

I didn't want to read and run today because your situation sounds awful, and I am so sorry. What you have on your plate is way more than I have every experienced.

Paid childcare was a lifeline for me, and I think starting to integrate a relationship with child minders and babysitters will do you well in the future. I completely understand if you don't have capacity to deal with that right now though.

You’ve asked for a pity party. I’m in. It sounds really tough and I am happy to listen to you moan if you need it. 💗 you sound like you are doing really well. Don’t beat yourself up about being angry…most of us get grumpy with our kids when we are tired, let alone with all that extra trauma.
i remember the questions when my DS was little. I got him some big fact books so he could look things up. Also a solo brain game…such as iq puzzler as they might occupy him and you can gently direct him towards them when you are feeling done. Good luck. X

I cared for my Dad through his journey with cancer and it was exhausting. I spent hour after hour on the phone chasing medication, palliative care, appointments, hospice places. I honestly don't know how you're coping with 2 young children on top. I would advise letting go of what you can. Let the housework slide, don't worry about the children having a bath every day. And accepting the reality that no matter what you do for DH, you're not going to make things any better or easier for him. You can only do what you can. Carers coming in and out is just more disruptive in honesty and Dad just got stressed by them asking him what he needed etc so I ended up having to keep explaining. It would have been quicker to have just done it all myself and in the end, that's what we did.

This will pass. And you're doing everything right.

I think this is a situation where you have to ask for help even if it feels uncomfortable. If someone I barely knew said they were going through that I'd take the kids for a few hours to give them a break. Friends, neighbours, class parents, family. Speak to the school for referrals too if needed.

You are a strong brave woman OP & I feel sorry this is happening to you. Would you be comfortable sharing where you live. There may be a registered child minder in your area reading this who could offer to take care of the children occasionally to give you a break.

Hospice care is not just end of life care - they are often far better at sorting a pain relief regime that works and offering palliative care. They can also -depending on funding available - offer care at home be it day or night which could be of immense help for you and your children.
As you say - many different doctors can result in a sporadic system where you never have the opportunity to build a relationship with just one or two. It may be worth mentioning this to PALS as they can often be the ideal point at which to flag up an issue. You want and need the best care possible for your DH and you don't to be repeating your life story every time you see yet another new doctor - continuity is vital for you and your DH here.

As awful as it sounds, the only thing thats going to really help is not having your DH in the house? You're exhausted from either taking the kids out away from him, or herding them away from him when you're at home. No one can really help you with those

Have you a local homestart ? They might be able to allocate you a person to help. (Hugs)