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.

So sorry for what you are going through @idontknowhowtomanageitall . So many good suggestions on here of organisations which might be able to help with finances, the gp for ideas of local support, and maybe getting some help in with cleaning and a bit of babysitting. Hopefully one of those will be able to help in some way.
When Dh was laid up for a few months, the cooking and cleaning just piled up. So maybe getting some help in for that would give you a bit of respite. Must be even harder entertaining very young children. You mentioned youngest was at pre school.... is that part ime? or could you ask to add another day. Or afternooon. Wishing you all the best x

Thank you. There are some lovely posts here.

As much as I appreciate the people urging me to ask others for help it’s a logistical challenge. It’s far too much to ask any other person to take both children plus their own out, and it would end up being yet another admin task I have to do.

DH is in a lot of pain and discomfort and is pretty much confined to one room and one chair in that room. It’s very upsetting to see.

My older child is in school and the younger one in preschool three days a week. We’re managing OKish on a practical level, it’s emotionally that it’s awful. It’s very difficult to get any real enjoyment from anything with DH as he is. I can’t have the children in the house for long so we are all fatigued from endless days out. I’m constantly going from here to there and back again.

And then there is the other side which in many ways is a release and in others is not worth thinking about.

What makes you think that your friends or family can't handle your two kids at the same time as theirs? Honestly, I love taking my kids and their friends out together as mine are MUCH happier, engaged in the adventure and not bickering with each other 👍.

Also, there must be a range of charities that can help with respite care for your husband and maybe even your kids. It might be worth starting with MacMillan to explore these two things. With winter coming, the kids are likely to be home more.

Lastly, surely your husband is entitled to not always be in significant pain? He needs a conversation with his team on that front to up the pain meds.

Well, they wouldn’t, that’s all there is to it, tbh and then there’s practical things like room in the car.

Hi OP, just a suggestion as someone who has been really in the trenches with C recently myself - if your DH has C, and definitely if it’s stage 4 & terminal he can apply for PIP to help ease his care and life. That could also go towards help with carers, respite and food/meals. Have you looked into this?

Yes we have it thank you

No problem. You may not think you’re coping, but you’re doing amazing. You have two young children, you’re keeping everyone fed, occupied and loved, and dealing with it yourself, and mums always go on the back burner. You’re doing so much better than you think. Sending you big hugs.

Hey @idontknowhowtomanageitall

firstly you are doing an amazing job just managing to get out of bed every day and keeping everyone fed and nurtured.

No one who hasn’t been in this sort of situation really understands the combination of physical, emotional and psychological stress you are under.

I have an idea of how it feels - when my DD was 2 years old I moved back home to help nurse my mum through end of life cancer - three months of taking care of my dying Mum, supporting my grieving Dad, still breastfeeding and also potty training DD, while helping my Mum shower and cleaning up her toileting needs. And working 20 hours from home.

Now I have a teenager and a DH who had a life changing medical emergency which has left him partially paralyzed so I am
doing all the family, house and parenting jobs while being a 24 hour carer - it’s very physically demanding as I need to lift him from bed to wheelchair and back etc.

But it’s the mental and emotional stress which is exhausting.

Get as much help as you can afford - cleaners, baby sitters or mother’s helpers.

Get a therapist to help talk through your emotions. Find any local caters groups who might support you.

Don’t worry about the short cuts - buy the ready cut veg, ready meals, microwaveable rice. If you have to stop recycling etc don’t feel guilty - just chuck it all in a big bin bag this week and forget about it.

Ask people you are close to for direct help.

Please could you batch cook some meals for me.

I need someone to sit with the kids one afternoon a week

Can you do the school run for me twice a week

Get all the hospice and NHS help available as soon as possible.

i think the problem is that it isn’t so much these things I’m needing help with as much as someone to share the load with and that isn’t possible. That’s why it is very hard because if someone did take the children out for a couple of hours I would still have to organise this and pack bags for them and so on. And then when they come back they are even clingier. So I do understand why people are suggesting it but to me it’s yet another thing I have to do.

I understand that issue with some solutions ending up causing more stress and work.

So the thing I do is if I can’t find a solution to the thing that’s causing me a lot of stress - for me for example doing all the wheelchair van driving to appointments - I try to find ways to drastically cut as much as possible from my plate in other areas.

So for example - it might be ways to offload as much cooking and cleaning as possible and have someone else in who can help
your DH go to appointments or sit and be at his beck and call for tiny things at home
etc.

You still have to be the sole parent and all that brings but you offload as much other stress as possible.

And if you can find a community / support group of women in your situation to talk to that can really help.

You clearly know exactly why the kids are behaving the way they are, you’re dealing with so much, you need to call in help. The first thing I would do is tell both the school and the pre school you’re not coping and it’s distressing for them being around your dh and walking on eggshells all the time .
the schools have access to a wealth of services you might not even know about, they will also open doors to holiday clubs and young carer groups etc, young carers starts incredibly young and offers respite trips to the kids , there’s so much available, community links, food etc, you just need to find the gatekeepers!

presumably if dh has all these aids then you have had OT input?
if not, then request it and say you need help to make the house function better for you all, at the moment the kids are getting into everything and it’s causing you extra stress, is there another room that can be completely comandeered just for him and his stuff , eg a lounge swapped out for a bedroom or similar?
im disabled and have had to do similar to accomodate all my equipment.

also how much trouble is it actually causing by them touching his stuff? Is that one stressor you could let go of? Unless they’re endangering your husband is it really an issue?

also tell your gp and ask for any access to ANY support you can get, GPs have social prescribers who might just know something, also there are community builders , referal to adult social care for an assessment, they won’t want to spend any money but they might also have helpful recommendations, and as other have mentioned , your local macmillan team.
now is the time to start screaming for help, nobody will come if you don’t ask.
sending solidarity to you

Can you increase the pre school days to give you more of a break during the week? Sorry you’re going through this, so very unfair.

OP are there any close friends or family members you could turn to at all? Or hire a 'Mother's Help' type person?

When a school Mum was going through the same scenario as you (albeit with older children) I messaged saying if anytime she needed us to have 'names of her kids' or if she just needed someone to do the washing/clean the kitchen just purely to take a bit of a load off, I'd be happy to help. She took me up on the first part and we had her children several times for playdates to give her a break. Other people did different things e.g. cooking meals for the family etc.

I would feel so awful if I found out later that any of my friends or family were struggling and needed support. I think some people are too worried about interfering or causing more stress, not realising support is needed.

If you don't think there is anyone you could turn to, a 'Mother's Help' type arrangement, I swear there is one people can access through the Health Visiting service... it's on the tip of my tongue, someone who can come and support with day to day things. Can you contact your local Health Visitor and explain the situation? Home Start! That's it. Can you speak to Home Start?
They offer practical support day-to-day!

Please please throw some money at this and tell people you need help

I'd advise the school and nursery *yhey will be able to sign post you to various resources) and be honest with friends
and via nhs look to access some help for your dh...

I would really really recommend getting a cleaner or housekeeper if you can find one even for 2 or 3 hours a week.

Ideally someone who will wash and sort the kids clothes, do bedding and keep on top of the house.

Additionally, Look at getting some care support in for dh and weekends.Not sure the avenues but maybe macmillian?

And at the weekends try and get out with the kids.
We have stuff like Willows farm, hobble down farm, hertz zoo, whipsnade & london zoo etc near us. I would look at membership for something like that.

I make a couple of sandwiches on the Friday and a few snacks - raisins, fruit, rucecakes crisps and one good "treat" and off we go.

I find it easy because its literally a totally kid safe environment where very little is a big deal and you can say "yes" a lot and unclench vs putting the cushions back for the 19th time.

@idontknowhowtomanageitall this is a nightmare almost no one else will go through. You have three people who’s lives depend on your care.
I would drop your parenting standards as far as is possible. Speaking bluntly, your children will not remember much of this phase as they are so young. Use any crutch you need to for this period of time. Put the TV on for hours if you need to. Feed them spaghetti hoops every night. If bathtime is doing your head in, just bath them twice a week. Take them to the same park every day to run around. Dont feel guilty about snapping if you are at the end of your tether, they probably won’t remember you being snappy 6 months later.

You don’t have to be a perfect parent at this point, it’s too much to ask of one lone person with this many burdens.

Make sure you have everything from the GP that can keep you sane, anti depressants, anti anxiety meds, sleeping tablets, whatever you need to keep going. Ask the palliative care team for carers or attendants allowance. Ask for a night sitter if you need one, Marie Curie do a night sitting service by district nurse reference.
Samaritans is always there for people in crisis, if you need a moan. You are literally in a crisis, if it’s all too much and there’s no one else, call them and cry or complain, it’s not unreasonable.

Give yourself as much grace as you would give one of your children if they went through the same situation in their life.

This! Sometimes I give my kids an iPad and some chocolate buttons for an hour so I can have a cup of tea in peace. I don’t feel any shame about it either.

Not sure if I missed it but are there no grandparents or aunts that could help take them to the park for an hour?

I totally get this. I was reading all of the suggestions and thinking that’s a lot of contacting and organising for the OP and she already sounds overwhelmed.

Not in anyway similar but my DFIL recently had Stage 4 cancer and he used to go to the local Hospice one day a week. They fed him, got him to open up and taught him pain relief techniques.

When my DF was near the end and couldn’t be left they gave us night sitters.

I know it’s another job but can you talk to his GP or the Hospice and see what’s on offer?

I think getting him a better pain relief plan might help you right now.

Also, I totally get that you don’t want to organise the DC to go on play dates because of the logistics.

Would it be ok though if someone had the older child occasionally?

Would putting a message on the class WhatsApp saying that you are struggling and asking if anyone could have DC1 after school be helpful?

You could ask them to have DC1 for an hour or two and then drop them back at home. If they were in the same class as my DC I would be more than happy to do this for you

Someone suggested earlier about getting them to read to your DH or watch a film together. Is this possible at all?

Sending a big strong hug OP.

Home Start is a brilliant charity - I’m sure they’d prioritise you for a volunteer under the circumstances.

www.home-start.org.uk/

Sorry you are going through this.
Are the school and nursery aware? Are they providing any support to you and the children? This could be emotional support in giving them time in a play therapy type session or also as a family giving practical support (I know our family support worker would have helped out in half term in some way whether that is helping source meals so you didn't have to cook or even coming over to mind the children for you to take a break).

Also regarding family/friends, if you showed them your post would they then help in some way?

Also are you receiving any counselling? You mention it being emotional support you need rather than practical.

@JustaSongAboutPingPong thank you for understanding The other thing we have to be aware of is it’s peak cough and cold season which could be fatal to DH at the moment. I know people mean well, I do, and I’m not saying no one will help at all but equally people do have lives.

At the moment, we aren’t at hospice stage although DH has had an awful couple of days so maybe it’s closer than I think. One big problem I’ve come to realise is how many different doctors you see and how unproductive it generally is. In the early stages of diagnosis I kept waiting for that one hospital appointment that tells you what’s happening but I’ve come to realise it’s more like coming to land in an airport from a great height where gradually things take shape and make sense.

I am so so sorry, this must be incredibly difficult. Small children can be very draining and I was not above sending them to their rooms when they were particularly annoying. I wouldn't put up with two hours of that game - and I certainly wouldn't have been shrieking "sausages". You explain that Mummy is busy and you will play later but not now and you stop responding. I remember one of mine went through a stage of endlessly asking why and responding to the answer with why and so on. I just stopped responding after four whys and four explanation in a row. That one is a doctor now so it obviously didn't crush his spirit.

I think, if people were being honest, there are very few parents who haven't yelled at their children. My grandmother was prone to lobbing a poker at misbehaving children - it was lucky that they were naturally athletic with lightning fast reflexes. (Just to be clear, I am not suggesting this as a desirable child rearing approach.)

Is there any family help at all available? Even to let you get out for a walk for 30 minutes or catch up on some sleep. Or can you stretch to a cleaner and a few takeaways to make things more manageable? This is probably not the time to be cooking from scratch. Focus on things like tray bakes, line everything with foil for easy clean up. Look up a few super easy recipes - mine is 4 pieces of chicken, rub with lots of paprika, pour a tin of undiluted condensed soup over them (say mushroom or celery) and bake covered at 180 degrees for an hour. I usually mix in some chopped fresh parsley. Microwave some potatoes to accompany. Not haute cuisine with a rather high sodium content but it gets a hot meal on the table with minimal effort.

You don't mention any treatment. Realistically, is it time to consider hospice care? I understand that they can often get pain under control with a morphine driver. You and the children can come and see him and spend better quality time with him. You need to look after your health as well because everything seems to be depending on you at the moment.

I do hope things improve for you.

@SouthernSeaGlass you know that just makes me feel crap as wondering why my three year old wouldn’t comply with that, so I’ll skim over that if you don’t mind. (Sausages?)

I'm so sorry OP for your terribly sad situation. I don't want to give you more things to do or think about, but am just signposting to these charities who can provide support for your little ones, and/or you, in case at some point you might need to contact them. Some of them offer pre-bereavement support:
https://www.childbereavementuk.org/
https://ruthstraussfoundation.com/maggies/
https://theosbornetrust.com/
Sending you so much love xxx

This must be impossibly hard for all of you.

I strongly recommend that you ask your GP for an urgent referral to the palliative care team. They are the experts in pain management and everyday care for your DH. They will be your point of access to other services that can make your life a bit easier. They may also have a family support team who are there primarily for you. I would not have coped without them, they made a massive difference.

I'm so sorry to read all that you're going through right now, OP. I'm sure you're having some great advice on here, but you sound like a fantastic person who is in an impossibly difficult situation. x