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.

Sorry OP. You must be exhausted.
Talk to the GP surgery to see what voluntary services there are to support you and the DC. Or speak to a cancer charity to see what's available.
Are there any part time nannies or childminders who can come and help during those difficult hours between school and bedtime?
💐

I’ve been in your position - my children were older than yours and it was still incredibly tough trying to juggle everything; I can only imagine how hard things are with such young children.

I’m sure you’re also finding that there’s no time for you to process what’s happening as you’re just in coping mode the whole time.

I wish I had some answers for you but sadly I don’t, but my thoughts are absolutely with you

I'm so sorry. I cared for my husband through this, but not with small children.
Ask whoever you can for some respite, to help with the kids.

It sounds like the practical help you need is someone who will either take the kids to the park for an hour or even just entertain them for a bit. Perhaps one of them could go to a friend’s house for the afternoon so you can give time to the other?

Someone up thread suggested a teenager to entertain them for a bit. They don’t have to be super confident or qualified if you are still in the house - just someone to distract them from the constant Mum-ing for a couple of hours. 💐

You need to ask friends and family for help. Claim every benefit you can and get paid support also. Good luck! Xx

Really does sound terribly tough - so sorry for you having to try and deal with so much.
Have you asked your health visitor about sources of support?
Local church may be?
Macmillan?
I also wondered about the Ruth Strauss foundation as they can support children and may be able to signpost even if they can’t help directly.
Sending best wishes and hope you find some support x

Hi OP I am the carer for DH with early onset dementia. I know it is not the same and my kids are older, but I guess there are some similarities. Be kind to yourself first of all. These are horrible circumstances and you will at times feel angry and also grieve the life you once had. I do. I try to focus on each hour and then each day. I also find taking a break is important. I take one day a week off with a couple of floating days around the month. If you are not currently working, you can claims carers allowance, which I would encourage you to do. Also work with Social Services on a statutory care plan which also provides you with some respite. I belong to a number of online groups for people who are now caring for partners with dementia and I find these useful. There is a charity called carers matter which also has lots of really good resources. It is worth a google.

So sorry to read this, @idontknowhowtomanageitall . It sounds beyond difficult. 💐

Your children's behaviour is entirely normal for their age - which is a compliment to you, that you are keeping their lives on an even keel as much as possible, despite the enormous stress. Any mum would fined that excruciatingly dull, but you have so much else to deal with right now - is there anyone who could regularly babysit them - take them to the park to let off steam, answer all the questions, play the interminably dull make believe games?

I just wanted to say I think you are amazing. Sending a big huge hug.

You are an absolute warrior and I feel for you and your family.
I hope you get the help and advice you need on here.
I’m sorry I can’t offer any useful help to you - it must be so tough but it sounds like you’re doing your best, and that’s all you can do.

This sounds so difficult op and I really feel for you. It's really no wonder you are snapping at the kids given the strain you are under at the moment. I have no solutions for you but some of the posters have suggested exploring if there is some carers benefits available is a really good idea. If it's possible to pay for some more childcare to give yourself a bit of breathing space then do it. It will be good for the kids and for you.

When my children were small they used to drive me round the bend and I wasn't caring for a very sick husband at the time. Be kinder to yourself, anyone would be feeling stressed and overwhelmed in your shoes.

Is there anyone in real life who you could show your post to? I can only imagine that people are just assuming you are coping.....which you are of course but it sounds like you are nearing breaking point. If I knew you and you showed me this thread I woild find ways to help you.

I am so sorry, this is an incredibly hard situation.
Do you have a best friend or sibling/relative who could help organise a rota of help? If I had a friend like you I’d happily take your DC out, help you clean, share meals etc. If you’re really specific with people “can you help with X” maybe they’d be more helpful. Maybe you’re giving an air of composure and capability that means they aren’t feeling your need. But you need to get some help, whether paid or from friends and relatives.

I echo what a pp said about your cancer nurse and carer assessments. You really have to ask for intervention and support, physically, mentally and financially. There are things that can be done to take the load, perhaps you feel that they would not make a significant difference but it can all add up.

My work involves working with families where a parent has cancer and the children can often feel scared and insecure even when very young and we think they don't understand. They can see the difference.

What stage is your DH at with his mobility and self care? Many of the parents that I work with (stage 4) can manage their own care, make a meal and interact with their children, although it exhausts them. Our work supports the family to engage positively and support the carer. Your cancer nurse should be able to liaise with the local provision that you have and find support. Say yes to it all and then you can filter out what you don't need.

I am not assuming this is you but a lot of parents start the grieving process when their loved one has an advanced cancer diagnosis and also take on tasks that they really don't need to. Tasks that their loved ones can do with some help or tasks that will take longer but are doable.

I am also caring for a DH who has stage 4 cancer and is pretty immobile, but he can still manage his own self care and make a small or easy meal. Our children are grown but our grandchildren will go in his room for a while and they will read him a story or they will watch a film, draw pictures, colour in or talk about their day.

Can your children do this for periods of time to give you some breathing space? Is your DH able to supervise them in the bath, make them a ready meal etc?

If you are overwhelmed you need support to assess what your DH can do and what he needs help with and what carers can do to support you both. If you do not have a health visitor you can ask Nursery or School to initiate an early help plan and gather a team to support the family.

I know that you feel that that is yet another task to do that you don't have time for but there will come a point where you cant do anything you will hit a brick wall. Can your DH not as k the school / nursery / cancer nurse for assistance?
Also as a PP said is their a Maggie's Centre or similar provision near you?

Good Luck

There is no one on earth that wouldn't struggle in your situation OP. You are doing a brilliant job of holding it together.
We need a national charity of volunteers to help in situations like this.
If you live in the North West, I'd be very happy to support you, even if it's just running to the shop. I suspect there is an army of recently retired folk like myself, who feel the same way.

Hi OP 👋
I haven't RTFT just your replies and I am sending hugs. This all sounds very difficult, I am sorry 😞

It will feel even more suffocating due to half term, but hopefully it will ease when half term is over. 🙏

Your 5 year old will be in school, is 3 year old in nursery?
Is there any way you could put them both in breakfast club or afterschool club a couple of days a week, just to give you and you DH some breathing space (I know it can be pricey, it's an idea but it can be costly). 💡

Random but could you afford a cleaner to come a couple of times a month, to give you both a rest? 🧼

Or do you have any support around you to get some hands on help? Whether it be family or friends?

Are there any childrens groups/clubs after school (brownies/ squirrels) that you could drop them off at for an hour, so you can get a coffee and have some quiet alone time?

Sending hugs OP 🫂
@idontknowhowtomanageitall

sounds really hard. Kids are relentless at that stage without everything else that you’re going through too x

OP you are doing amazingly well and should not feel guilty for losing your temper. You are exhausted and obviously trying to hold it together for everyone - so you must ask for help wherever you can get it. I realise that is not as easy as it sounds but those people who said 'you know where we are' are the ones to ask. Even if they just take your kids off your hands to give you an hour to yourself.
DH must also step up here (where he can) - he needs to be seen by pain management. Your local hospice may be a good start here and they can arrange help at home too or take him into the hospice for respite care while they sort a pain relief regime for him for when he is at home. So that he can feel well enough in short periods to have time to spend with the kids doing quiet activities - reading a book or colouring. He's in pain but he is also still their Dad and they need him too. Children will learn that they mustn't do certain things around him and they will forget.You are all adjusting to a new way of life for the present but must try and take what pleasure and happiness you can from this awful time too even if help is needed to do so.
As others have said apply for PIP and other benefits too - so you can pay for help if needed or childcare. You have not mentioned extended family much - are you and DH both from small families? My local hospice was a dream when I was going through chemo and arranged complementary therapies, counselling, a monthly group get together to do crafts, chat, tai chi - all sorts really. But they are there for the supporters as well as the patients who are very often forgotten while so much is going on. Sending you hugs OP .

Very difficult circumstances OP. No wonder you feel just worn out . Sounds like you could use an extra pair of hands . Do reach out to anyone that's offered . Suggest that perhaps on weekends, someone could come for that witching hour of bath and bed . Or deliver a meal on Saturday. Tag team on school days if anyone offers a playdate . Nobody will expect you to take their child back . I know so many of us are chiming here offering suggestions but none know the reality for you . I find it hard to believe that there is no additional support available to your DH , yourself or your DCs - is there anyone in your life who can advocate on your behalf ? Please try any suggestions here that might lead you to organisations that may help .

OP, i think i remember other threads.
You have had a really hard time.
You were the default parent long before his illness and now this.
He refused your request for extra childcare during the mid term whichbwould have help you a bit, and you feel obligated to be out of the house for very long days.
Yes hebis ill, but he has been a very selfish father and husband and you have long carried a huge burden.
I feel so sorry for you.
You sound absolutely burnt out, and why wouldn't you, with all you have going on.

Perhaps if you stayed home more and he felt the pressure of the children more, he might be a bit kinder and more appreciative of all you are doing.
You really have my sympathy.
Take any shortcut you can with the children.
This is a survival situation for you all.
Sending you strength.

I'm so sorry OP. What a terrible situation. I wouldn't worry about loosing your temper or getting irritated by them. Let's face, a saint would snap in your shoes. I'm going to say the same as lots of other people, you need some help. Either someone to take the children out for a couple of hours or someone to do the cleaning/ cooking for a couple of hours whilst you play with the kids. If you can afford it get a cleaner and a temp nanny. Ask if any staff at preschool/ nursery work for families after their shifts. You need to look after yourself because you are carrying a heavy load and you do that best if you are well rested and well fed. Good luck and massive hugs.

That sounds so tough OP. I can’t imagine how hard it is for you all.

you say that there isn’t anything that people could do. But could you think about that a bit more? Ask if anyone could take the 5yo for play date once a week. Ask if another mum could drop your 3yo at nursery a couple of times a week? Take the kids to library at the weekend? Do a click and collect shop for you? Sit with DH for an hour or so? Step in while you go to an exercise class or to the pub? Pick up prescriptions? Invite the kids for tea? Do the ironing for you? Play with the children for an hour every Saturday?

people (and I’m one of them) are great at saying they want to help, but not getting off the arses with practical support. Tell them what you need. Tell them what will make a tiny difference. Tell them what they can do to help you maintain what little energy you have left.

you shouldn’t have to tell them. They should be stepping in without having to be asked. But they’re not and you need help. So you’re going to have to ask. Could you confide in one good friend or school mum and ask them to round up a team to help take off some of the strain. You sound so lovely, I’m sure you’ve got people who love you and will step up once they realise how you’re drowning.

sending a big hug.

I'm so sorry this sounds very hard.

If people do offer to help can you ask them to make a meal and bring it round? it would be one less job for you. Or they could pay for a takeaway one evening. Just little things.

Oh love. I'm so sorry for your situation. Speak to Treetops and Macmillan. Marie Curie can help, too.
Have a word with the care coordinator at your GP surgery to see if you can get some care input.
If his pain isn't well controlled, could he have a short period of hospice care, to try and get the pain under control? Palliative care nurse specialists could help, too. Do you have a nurse specialist within your husband's care team at the hospital? Could you get any extra childcare at all?
Nothing particularly useful to add, other than I'm sending you a huge hug. Look after yourself xxx💐

This. All of this.