Struggling with husband's cancer diagnosis after years of unequal parenting

[aponyatblackbirdcottage]

I met DH in 2018; we became parents at the very end of 2020 and got married in 2022; our DD was born a year later. So we’re now over five and a half years into having children: DS is six in December and DD was 3 last month.

In that time DH has not really been very hands on. He’s married to his job really. He doesn’t do their baths and stories or tidy up while I do, he just sits there while I sort the children then the house. He doesn’t get up with them at night if they wake or in the morning if they wake early. Even if he does do something it’s been instigated and sorted by me and he just doesn’t seem to think he has to do anything. So for instance he used to take ds to his swimming lesson on a Saturday morning. I’d get DS’s swimming stuff ready, he just had to take him. Then he’d say something like ‘oh, you didn’t pack DS’s goggles’ - it just didn’t occur to him that he could have packed his goggles.

I am sure I wasn’t blameless. I was working three days a week after maternity leave with dd and became increasingly resentful. It was very hard having both children home on my days off and I felt very alone. DH never took them to the park for a couple of hours. Sometimes he’d take one (usually the older one) and make out that was a favour.

Anyway, I did seriously consider ending the marriage but money was a big issue and I didn’t want to disrupt the children or be a part time mum. I also kept thinking if I could get through until both children were at school I could have a couple of days a week for me and they’d be a bit older and more independent and things would be better generally.

DH then started complaining of pain this year and I didn’t pay much attention at first but he does have cancer. We’re waiting on biopsy results.

He is genuinely in huge amounts of pain and I feel awful for him. Despite all I’ve said above I do care about him as the father to my children and someone I said sacred vows too and meant, but if I’m being really honest I am finding it hard to feel any sense of impending personal loss or grief. Which does make me feel the marriage was maybe not in a good place.

So now … DH can’t walk far. He is only able to sit on a specially adapted chair, which is in the main living area of the house. (Please don’t suggest we move it; we can’t.) He is insisting on working throughout, and holds teams meetings on the chair with the children gambolling about because it’s school holidays. Obviously this isn’t practical at all so I’m having to have them out all the time. I am exhausted as a result, and so so fed up.

I know this is a terrible thing to say but I’m so worried about life looking like this for the foreseeable. DH cured would be one thing but in all honesty this does not look likely. DH dying is awful and I don’t want to wish this on us. But this half life, where our home is no longer a sanctuary but a place or stress and anxiety and an office as well is just a nightmare. It really affects the children having DH there but ignoring them and just frowning at his laptop, which affects behaviour.

It will probably drag on for years like this and as it does I’m losing my children’s childhoods and my mind! I can’t just leave of course. I don’t know what to do.

Does he share money? You say he’s a high earner, but you’re broke.

I think you would benefit from councelling. It would give you the space to talk about everything with a professional. I think you could go on the waiting list now with a view to see someone in September. Also, your kids light benefit from some emotional support. Does the school have therapy avaliable? It would be worth talking to the senco in the first week to see what's avaliable. Our school has art therapy and councelling.

It sounds like a really tough situation @aponyatblackbirdcottage
Yes he’s seriously ill, but there needs to be room for you too in life.
It might help to talk to someone. If you don’t like it you don’t have to go back a 2nd time.
As well as MacMillan your local oncology service may have mental health professionals who could support you (often funded by Macmillen). It might help to talk to someone in real life who won’t judge you, and may have even seen similar situations before.

I don’t understand how he’s a high earner, but you describe yourself as poor. He’s abusive, and he has cancer… two things are true at once. I agree with you that can’t up and leave, and I can see why pp (and maybe me) are frustrating you but it’s hard to see you tying yourself in knots and not offer suggestions. He is suffering, yes, but rightly or wrongly I’d be seeing this as a time to be getting ducks in a row and taking over finances etc. you need to be financially stable and if you’re not up to speed and able to see clearly your financial situation then he’s even more nasty than I originally thought from your posts. He might have squirrelled away money or be in debt or just about anything, and if the worst happens, you’ll have no oversight.

@Dorisbonson it is stage IV unfortunately and in the bone. What we don’t (yet) know is the primary so treatment is difficult. He is hiding in work as others have said and I honestly do get it, it would be easier to feel less frustrated if it wasn’t an ongoing pattern.

I’ll try and contact MacMillan again when we know more @Besidemyselfwithworry ; I know they’re great it’s just hard as when I spoke to them before it was ‘what is this and that’ and I didn’t know. And then DD woke up anyway!

We aren’t going to be separating. It would take actual violence and danger for me to do that at this stage and of course that doesn’t apply here.

@EverybodyLTB as a family we are not poor but I don’t earn a lot as I’m part time. And it doesn’t go far with two children, our all day over the summer. My poor comment was a bit tongue in cheek though, but in all seriousness yesterday cost

£50 for the tickets for the three of us (we get a return visit so not a bad deal)
£10 ice creams
£5 for ds to go on a slide thing
£5 for a toy mermaid to placate dd who was unimpressed she was too small to go on the slide
£3 for them both to go on a tractor

so £73, plus fuel. And I’m having to do that every day. And yes not every day is that expensive but mostly I do have to go to places designed for them if that makes sense.

If his cancer is stage 4 you should be fast tracked for PIP and you should claim Carers Allowance too, please ask MacMillan, their benefits advisors are really helpful.

Exactly this - this is what I was trying to say.
MacMillan can be an absolute game changer for families. X

He should ask for a referral to Occupational Therapy urgently as well, they will provide things like special chairs which are properly tailored to his condition with no charge.

Is your money not going in one pot as a family? My partner earns more than me but we share everything.

So not spending £900 on nursery was a false economy, if you are spending the best part of £100 on a day out. If he's being tight in saying no to nursery, you really will do much better by just doing what suits you and what will minimise your own stress.
In all honesty there's no point in leaving him - it will fuck up all the financial assistance you might be eligible for when he does die.
Can you access some kind of counselling, to help you with all this - it's a lot to unpick - the resentment at his continued selfishness and the increasing pressure on you, the weight of responsibility, living in a kind of limbo, maybe some guilt at not feeling grief more than feeling pissed off. The grief might come later, idk, so I think you do need someone objective to talk to, who is a professional.

@Aiming4Optimistic i think what’s being missed in translation here is that I am paying for the days out while we were jointly paying for nursery. Sorry, I genuinely thought that was clear from DHs refusal.

PIP is fast tracked when someone has twelve months or less to live - this may apply to DH but equally it may not, it could be years. We just don’t know.

Surely in this lovely weather, you and the kids can just play in the garden. You have a garden room that could be converted into a playroom, and for some shade, you could picnic out there (get a plug in coolbox or mini fridge). You don't need to go out out every day.

I know you're not interested in hearing it, or interested in compromise, and just want to vent about how your husbands pain and (terminal?) cancer is so much harder on you than him.

Right? Keeping calm over the summer while tge tests continue seems like a great idea. Why is he blocking it? Can you override that? He isn’t the ultimate authority!

I think you should stay in the house, dont go out all the time. He is working because he wants to, at this stage. They have basically already said they only expect a min output. If the kids gets on his nerves then so be it. He may be more open to exploring other options then.

@aponyatblackbirdcottage

People have offered some really good advice on here.
Once he has his appointment and you see the consultant you will know and can plan but at this stage as you don’t know you can’t.

MacMillan support the whole family they have a phone line you can call at any stage it might be worth speaking to them even before the appointment as they will hopefully help and reassure you.

Rude of you - OP hasn’t said that anywhere. She’s just talking about the very real difficulties she’s facing.

Okay, so you need to address the money issue. He shouldn't be putting the cost of entertaining the kids solely on you - it's his fault they can't easily stay home. If you don't already have this, then you need a joint account where all the costs of maintaining the home/kids are paid from and contributed to proportionate to earnings. So if he's a high earner, he contributes more. If that's not happening and you are disproportionately paying for the children, while working less because he refuses to help, then that's financial abuse and I would suggest you get legal advice to work out all possible scenarios financially.
But ideally, you get him to set up a standing order to pay more and then you decide to pay for nursery (or whatever you need in the future) and don't even run it past him. To me, his choices are 1) the kids stay home, you do nothing to help him because he does nothing to help you or 2)he pays for that you need.

He will need your support because his health is not going to get better. I would make whether he gets that support, conditional on him doing his fair share financially now.

@aponyatblackbirdcottage that sounds so difficult and traumatic.

There is a lot of grief in what you are speaking out loud for the first time. Grief about your husband not stepping up as a parent, grief about your children missing out because of that, grief about you missing out on having an available partner and of course a tonne of grief about the cancer diagnosis and the way your husband is handling it and how that impacts the whole family.

Essentially you sound estranged and extremely lonely inside your marriage and dealing with an ill husband at the same time. That sounds properly painful and unbelievably sad. I think there is a certain type of pain that comes from mourning parts of relationships that are still ongoing that makes it very particularly isolating, people get of you are mourning something or someone that has passed by but mourning something that is very much with you is much less tangible.

I honestly think having a sit down and cry about where things are might give you the space you need to keep going forward.

It isn’t the most practical solution but it does allow pain to move through instead of letting it build up inside each moment. Crying is an expression of what you are feeling and it can be incredibly cathartic and especially if as you say for the moment things just cannot change it allows you to take some time to move through what you are feeling.

I deeply hope that this progresses and becomes just a phase of your life and things move forward for your family. Take care of yourself.

It's a taboo subject but I didn't feel a personal loss when my husband died. I was sad for him as a person and sad for my son but I wasn't sad for myself or feel a great loss. I'm not sure if that adds anything of use but just know you're not alone with those feelings.

I’m so sorry to hear your difficulties you have so much going on, grief of a life you thought you would have married with children, grief for a future you anticipated.anticipatory grief of the loss of DH. This will drain you, trying to find energy for things like parenting outside the house ever day will be nigh on impossible. You probably have anger and uncertainty milling around with complex feelings of resentment.

Can you try and organise some counselling for yourself, the summer hols will be over in a few weeks. You can’t alter DH but you can do something for you. Get used to factoring self care, whatever the prognosis for your DH you need to learn to provide self care for yourself.

sending lots of love hugs and strength your way

Well, you are being a bit provocative and I also think you’ve forgotten that children this age don’t have the concentration to stay with one thing for long, so they aren’t “in the garden” as much as they are in and out and out and in. I would actually agree I could do with utilising the garden more in some ways but they aren’t massively fussed by it because it is always there. (There’s also little to no shade and it does get intense on some of the very hot days we’ve had.)

I also completely agree it’s worse for him. While I can’t pretend I haven’t been upset and let down by him in some ways I also have tried to make it clear I care about him and even if I didn’t, I’m not a horrible person and so wouldn’t wish this on anyone, not least anybody young. Do bear in mind this is the father of my children. I wish I could take it away and I can’t; cancer doesn’t work like that of course.

The ship for DD going to nursery has sailed, it’s done, maybe I should have pushed harder but I didn’t and she’s with me now. I am trying to make the best of it but I am frazzled and tired and struggling to enjoy my children.

@Castolaya fhats very kind. It may come later; I’m numb at the moment. I know I can cope alone but this in between is a type of purgatory.

@NoArmaniNoPunani it adds a great deal and I am genuinely very grateful for that contribution. Thank you.

@Metalmotha i just genuinely have no time at all, none. Every minute of the day is monopolised by children and general Stuff!

Practically I would get him to apply for PIP I know people with cancer who have it and macmillan can help you apply.
Macmillan online chat is anonymous and great for offloading and speaking to others who live in difficult circumstances.Sorry the family is going through this.

We’ve applied for it thanks. But a decision won’t be for a while.

You are correct. People often present very simple ideas about how they would theoretically manage situations but in reality life is so much more complex.

Not that it helps but is it possible your husband is autistic.

What you are describing definitely exists as an autistic profile in high achieving successful autistic men. I work in a field in which they are very over represented with that particular presentation —think Elon Musk—.

I’m not in the same position, but my husband was diagnosed with a form of blood cancer when my youngest was 1. He was very sick for a few years. I was working ft and I chose to do all the bedtimes because I felt all I could do was try and help my husband get as much rest as possible. In truth I half did myself in in the process and I don’t know if I’ve fully recovered ten years on from diagnosis.
i absolutely understand the exhaustion, resentmentand fury of the lack of acknowledgement for everything I (willingly) sacrificed. It was unbelievably tough.
i don’t really have any advice because I felt like I was at war. There is only through.
im sensing that you aren’t looking for advice, more a place to say what you feel is the unsayable.
Much love to you.