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.

I think i remember your previous thread where your DH refused to give up work and took over the front room? If this is you then you are an absolute saint.

Do the children have any nursery friends or school friends who they could have a playdate with? Do you have any friends who enjoy cooking who could make you up a few meals. I know it feels like everyone says 'you know where we are' and then doesn't offer real help. But I think it can feel pushy and people don't want to intrude.

Thankfully they are back at school tomorrow! I hope you can have a rest, bit of respite and everything will feel a little brighter.

@idontknowhowtomanageitall this sounds extremely difficult. I know you mentioned they were on half-term but are they usually both in pre school and school full time? If not can you increase their hours? Are you working full time yourself? Maybe consider holiday clubs while all this is going on. I know it might cost more but there's a lot going on and you need to prioritise your mental health.

I'm not in the same situation but I'm working extremely long hours at the moment as a single parent and I find I'm snapping with my three year old a lot. I feel terrible when I do but it's so difficult to be a good parent when you're exhausted and at your wits end. I think putting them in paid childcare to give both you and your husband some space and then planning some nice activities for you and your children at the weekend (maybe with another family with kids) so you get quality time with them rather than it seeming relentless slog. I assume you get a certain amount of free hours a week (leverage tax free childcare if you're not already).

Also a cleaner as the others said.

@idontknowhowtomanageitall I was also about to post this. My experience with a close family member is that the one thing they were more than adequately given was pain relief. Of course that can have side effects that are undesirable but the pain was managed.

i feel for you and Im sorry that you and your family are going through this.

Having helped care for my mother with cancer I know how debilitating this can be and how it takes an enormous toll on you.

You need to sort your husband's pain management. He probably isnt being honest about how much pain he is in as he doesn't want to upset you or be a burden - if his painkillers are right then he will sleep a bit more and you should go to bed as soon as the children are in bed - which should be reasonably early. You can't function properly without sleep.

Speak to your local oncology unit and local cancer charities such as Macmillan to see what they can do. Speak to your local hospice ours were wonderful. Does he need personal care? Can he have carers come in to do the personal care 2 or three times a day - we had them morning lunch and evening time.

When did your little one turn 3? Look at free nursery hours. Do you have life insurance? Its horrible but a payout could fund childminder, babysitters, afterschool or holiday club care or cleaners. Do your grocery shopping on line. Buy ready meals if you need to. Think about breakfast club, afterschoool club and school meals for your older one then sandwich tea in the evening. Don't stress about tidying up - its not a priority.

Reach out for help, its hard; some people are shit but others are great but don't know what to do and may be afraid of upsetting you by asking.

Keep coming here to vent, sometimes it just helps to relieve the pressure a little. You are doing great.

Dearest @idontknowhowtomanageitall a lot of us shout at our kids for a lot less (I regularly turn into a fucking banshee and I don’t have anywhere near as much on my plate)

Try reaching out to places like MacMillan or Winston’s Wish - they are experienced and, if they can’t help, they can signpost

Cut yourself some slack, you’re amazing x

What does the last sentence mean? Are you breastfeeding? I can't understand what you're saying here.

Sorry to hear this op.
Please 1. Speak to your gp for you. You need support. Hv is available to you too
2 speak to the school head. They need to know and may be able to support practically eg holiday schemes etc .do other school parents know? They will surely offer play dates etc .
Claim what you can and pay for some in home help

Oh god the leaflets! I remember those -
so much recycling, so little help.

I think experience of support can be patchy. I was very bitter about Macmillan (source of the leaflets!) with my close relative as
they were really unhelpful. However, for another younger relative and friend, they have given more consistent and positive support so I guess it varies by area or age.

I’m sorry other people known to you haven’t stepped up. I can’t imagine not offering a play date and tea to a classmate of my child with a parent in your position and you say you have asked directly too. That’s horrible for you and I hope that changes for you.

Hugs, OP.

So sorry OP , you are not sef pitying at all and even if you were you have every right.
From seeing relatives go through it cancer pain looks relentless and exhausting. Definitely encourage your DH to get a medication review.
Second all if the suggestions regarding taking help wherever it can be found. Make life as easy as it can be day to day .
Sending love to you and your family x

Best advice I can give you is to casually mention it to a school friend’s parent. This happened in our DD’s class and we ended up messaging the mum after hearing through the grapevine, and we would take her daughter frequently for whole day out activities. A few years on and her DH is close to remission, and our DDs who weren’t overly close before are now best friends. Sending all the hopes your way for your DH to get better. You are a superhero, please give yourself grace. It’s ok to get frustrated, you’re in a horrible very unfair situation.

Lots of sympathy from me. My youngest recently turned 6, so the constant demands of a 3 & 5 year old are still very fresh in my mind. I can well imagine that it's utterly exhausting to look after them and a seriously unwell husband at the best of times - let alone towards the end of half term. Are they back at school/preschool tomorrow?

A few practical suggestions from me:

• lock on DH's bedroom door so they can't barge in and mess around with his equipment or bang into him etc. He won't get full peace while they're home but will have relative peace if they can't get into his room. You can't be taking them out all the time and need to be able to relax at home with them without worrying they will disturb him.
• screen time, some people think it's the devil but oh my god it's the only way to get some peace from the relentless mummy mummy mummy mummy
• look up your local home start and request help from them, I believe if they have someone available you will get a volunteer who visits regularly to provide practical help
• you didn't mention whether DH has any nursing care at all, but do talk to his medical team or macmillan about ensuring he is getting the care he needs and minimising the burden on you
• request a carer's assessment for yourself

If you had to name two or three people who you'd turn to in a crisis, who are they? (Best friend, parent, sibling, even a kind neighbour who is always happy to help) Do they all know exactly how much you're struggling? You might need to spell it out to them and make very specific requests.

School holidays are tough for us (for different reasons) and our kids can do holiday clubs, so that could be an option for your 5yo? We have one helpful grandparent who kindly spends a day with each child during the long summer holidays (they are a handful together so we usually ask grandparent to have them one at a time, it's nicer for everyone that they get one-to-one time). I'm not sure if you have anyone who would do that but it's certainly something to start thinking of ahead of the Christmas holidays.

Hang on in there xxx

i totally get your leaflet fatigue, and the provision of support varies from area to area, but some places do have fantastic organisations that actually do stuff for carers. You can search your area here:

https://www.carersuk.org/help-and-advice/support-where-you-live/?gad_source=1&gad_campaignid=22425190480&gbraid=0AAAAAD2sdcYCY632h4VDyTl-W80LdaNjw&gclid=EAIaIQobChMIqLj3t_jnlwMVq5dQBh2R8SFvEAAYASABEgK4M_D_BwE

Please don’t say it’s a pity party - I think we all feel hugely for you - I’m sorry you haven’t got much support too - honestly if I knew someone in this situation and was local I would love to help - have you contacted social services as something like homexstart may be a bit of help - I think if you can identify what help you need it may help them to help you - is it someone to clean, take the kids out a bit, or more on the caring side? Think on thisxand then ask social services or an agency like Marie curie what’s out there . Please cut yourself some slack too xxxx

I think about you quite often OP (I remember your other threads). How is your DH doing? I know he was trying to work and was in a bit of denial about the whole thing, which is understandable.

I’m so sorry you’re all in this situation and also sorry there’s nothing I can do to help, but I do think of you.

How you approached Marie Curie for help?
They can be very supportive
https://www.mariecurie.org.uk/

I’m so sorry @idontknowhowtomanageitall what an incredibly awful time.

Is there any calm stuff they could do to connect with your DH? Watching some cartoons or colouring? Maybe just 15/20 mins a day so they don’t feel like they’re so distant?

Do you have much spare money? Maybe if you could pay for some additional childcare at a few points in the week so you could have some breathing space?

If you have friends who have offered help ask for specifics:

‘Mavis - you know how you offered some help? I’m really drowning, I would really appreciate it if you could maybe make a few lasagnes I could shove in the freezer’

Put play dates in for the kids if you can.

I’m so sorry you are going through it.

Also, where is DH's family in all this?

I had a friend who died of cancer, children similar ages to yours, and when she was very ill her parents effectively moved in, they were providing a huge amount of care and support to the whole family (friend plus her husband and children).

I'm not saying your in-laws should move in - you might not want them to even if they offered! But just pointing out that it's their son who is seriously ill, the mother of their grandchildren who's on her knees, their grandchildren who need extra adults in their lives.

Only losing temper twice is saintly! I lost it more often than that with nothing like your excuse.
You do know you can also tell the 2-year old you don't want to play that game all the time? You can tell her you are tired or not feeling like it. She needs to learn that adults don't always abide by her wishes.
It sounds as though you are doing very well, with a tricky time ahead. I do think telling the children if you are tired or in a bad mood could help - they have also been tired and grumpy so it won't be an alien concept to them. I also highly recommend Wallace & Gromit films that you can watch with them so you get a rest.

You’ll be exhausted and need help. As difficult as it can be, you need to increase your support network. When people say “you know where we are”, straight away ask what they can do.
If you’re in the UK, all pre-school children have a health visitor, contact them. They may not have been informed about your situation. Ask your GP surgery about support for carers, they usually have posters or a link on their website. What can GP/Mcmillan offer for your DH?
Check welfare rights and see what you could be entitled to.
Outsource what you can; cleaning, shop online

You really need a breather. I really hope you get some proper help on or off here. Sending love and as a PP said, be kinder to yourself xx

I was ill with young kids. If people offer to help - do ask and do be specific. “Could you take the kids to the local park for an hour?” Or “could you come and play with the children for an hour while I catch up on chores”. You really need support and there’s no shame in asking.

You could also extend nursery or childcare help to give you and DH some precious time together, or give you time for a breather if his family or friends come to visit him.

www.childcare.co.uk has part time nannies and babysitters. We had one for a couple of months which was expensive but worth every penny.

Expensive!!She would have done if she could afford it.

I am very sorry OP, hugs x
Is it possible to get a babysitter to entertain and take care of the children - even if it is once a week for say two hours so you get a little break?

I am sorry I don't have much advice

If he is eligible for any professional carers or support, you need to take it. He may prefer your care. You and the children will feel the loss of privacy. You need less on your plate and getting in help is worth the sacrifice.

It is also ok to let your parenting standards slide. Easy meals, screens, and other things we tell ourselves are “bad parenting” are really not that bad. Think about what an adult does for themselves when they are stressed. They often told to choose a comfort meal and select a relaxing activity like watching some tv or reading a book. Your children are stressed. The same healthy coping mechanisms that adults use are ok for them to access.

If you could do one thing to make it easier, I would suggest the next time your oldest is out of the house, use the opportunity to examine your home for reorganization. Or even ask someone who has offered vague help to come in and help you with this specific task either by babysitting or by helping with the organizing. Is there anything you can do about the physical points where you are finding yourself having to chastise the children repeatedly? Can you find a way to place the mobility aids in the room that makes them less attractive to the children or even inaccessible? Can you move other things they need to leave alone? Even if it means buying a cabinet, storage trunk, or plastic tote. It doesn’t need to be pretty, it just needs to be out of reach.