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.

There’s a real person on the receiving end of your comment you know. For someone who thinks she’s showing a lack of compassion, you’re not exactly doing a great job of modelling that yourself.

Dear @aponyatblackbirdcottage, I am so sorry that you are having to live such a shitty life for now. I think that it must be especially horrible for you at the moment because you have no idea when this situation will end, whether that will mean that your husband dies, or he gets better, or - I don't want to say this - his life doesn't change much for a long time, maybe even years. So, I really hope that his biopsy is able to give you some proper answers to those very difficult questions.

Once you know what the liklihood is of his cancer getting worse, improving, or just staying in the sort of chronic limbo that it appears to be in right now, that would hopefully help you to cope with whatever the reality of the situation is.

@Fullydisgruntled - quoted above - is obviously trying to be helpful, and if one of her precisely 4 ways to solve a problem resonates with you then that is good, and it will hopefully help to resolve what is at the moment one of your most difficult issues.

However, I don't agree with her about there bring precisely 4 ways to solve a problem, and as your problems are specific to your sad circumstances, I will suggest one other specific way to try to resolve the issue of your husband working in the lounge every work day.

I think that you should ignore the fact that your husband would find it very difficult to work in the lounge while the children were there, and just let them lead their lives in any way that is normal for them, in their daily routine. They have only 1 chance of living their lives in the best way that can be managed under these awful circumstances, which imo means that they have their lives disrupted as little as possible.

You have already told us OP that your husband has refused to let either of your children go to holiday play care during these summer holidays, and that he also won't give up work even though he could do so financially. It seems that your husband is trying to put you into an impossible position, and just because he is in a lot of pain, and may be dying, he has no - moral or otherwise - right to insist that his way of wanting to arrange things is the way that the rest of you should actually put up with.

So, I think that the children should be allowed to play in the lounge, especially if their antics are within the parameters of what is normally allowed inside the house. Your husband can decide whether he wants to struggle on trying to work under those conditions, or give up work, and either sit there feeling miserable all day long, or he could actually become a much better parent to his children by spending quality time with them, and joining in with their games whenever possible, or even just by reading them a story each day at snack/quiet time.

From what you have already told us OP it seems unlikely that your husband will choose the better option, but I don't understand why your husband is the only one who can insist on things. What could he actually do, apart from rant and rave, if you say to him that his way isn't working, that it isn't fair on the children, or you, and therefore you are insisting that the children do use the lounge as is normal at weekends and during school holidays?
Good luck OP, you are a brilliant mum, and deserve so much more than this selfish man has ever given you xxx

Do you feel better now? OP is clearly struggling, and you have done all you can to make her feel worse. Well done! I am in a very similar position to OP, and this is exacty why I haven't posted on here about it.

This is what I was thinking. It’s very similar to a post not so long ago, but here it’s couched in different terms. That particular thread ended up being very combative because OP kind of drip fed the circumstances and it turned out that she wasn’t looking for solutions, but just to vent.

This is really rough OP, I really feel for you.

I don’t have any practical advice (other than if pip comes through could he buy a second one of the chairs and set it up in another room - a him space for work etc? Might make the day a little less disruptive and give him a quieter space)

I am ngl - sounds like it is going to be a rough month. But, come September there is some respite of the kids being in school.

can he be left? Could you take the kids away for a night or two (I know expensive)

Can you organise play dates?

can Macmillan help with future respite care for him.

awful as it sounds, I don’t think it sounds like he is going to have years. It is ok for you to feel some relief in that as well as sadness.

I think this response is on the money. Take care OP x

We know he has stage 4 cancer, we know they are looking at palliative radiation. We also know they aren't looking at any urgent treatment and have said that it's not curable. He's also in huge amounts of pain. He's clearly dying, we just don't know how long he's got.

Really no need to attack someone when they are clearly crying out in desperation.

You have no idea until you are going through it.

Do better

OP I had a similar experience when my DH was diagnosed with terminal cancer. I saw the negatives as well as the positives, and I think it’s possibly because the shock of the diagnosis pulls everything into sharp focus - be that for good or bad. I have no suggestions or solutions for the shitty situation you’re in, and I guess that’s probably not what you’re looking for anyway. Sometimes you just need a safe space in which to vent so you can keep going. I know something of what you’re going through and the only thing I can tell you is that it’s normal. Your body and mind are shifting to be able to cope with what’s in front of you and it feels insurmountable at times. I’m so sorry.💐

That he is still working means it’s the only thing he’s got. The only thing he can still do. He can’t hug and play with his children. It’s too painful. Its relationship with his wife is completely broken down. He’s gotta put Everything into earning more money.

Do you have a local teenager who may be willing to help a couple of hours a day for cash?
i am sorry you are going through this

I have been you :(

I think you need to be kind to yourself and find some respite. You will have had a massive shock as will your husband with the diagnosis. I think it is normal to feel anger and numbness as part of the process. You’re also likely experiencing a degree of anticipatory grief. His situation is shit but so is yours.

You’re also in the worst possible place of uncertainty. At the moment, I suspect you both know things are looking pretty dire prognosis wise but until you have that certainty there will be a bit of hope dangling. If you knew it was terminal with 6 months you could plan. At the moment you don’t have that so I suspect he’s clinging to work as a distraction and you have no certainty to be able to plan.

like a few others, I think there will be a good chance that the cancer has been affecting your husband for a long time prior to diagnosis.

If he refuses to pay for nursery that means you have to use up all your spare time to deal with the children. This means that you won't have time to help and support him, nature will take its course more quickly.

Hi @aponyatblackbirdcottage

I am really sorry for this situation you are in. It's so sad.
It is however totally ok not to feel grief stricken. You can feel sad for him, or your kids, but you don't have to feel incredibly sad for you or your relationship. It's ok.

In the interim, is there another room or section of the house you can turn into a play area for the kids, make the room where the chair is, his room for work, TV and relaxation for him?? can you brainstorm on here some practicalities for coping through this period Of transition?

I would also try and learn as many things as you can in terms of how to look after yourself - in the future. Ensure you know how to pay bills, what his passwords are - just make sure you are technically literate.

you are well, strong and can be more in control. He is sick and in pain - make some changes that work for the family and you whilst allowing him to hold on to his work which is bringing him comfort at the moment x

Backing up what a lot of people have said here, don't enable his poor decision making. He wants to work, fine, but you can't all walk on eggshells around him. He won't pay for nursery, he gets to live with the consequences.

And above all, talk about power of attorney with him because my Dad went downhill very quickly and died before the 6 months was up and it came through. It made life even harder....

What would happen if you just spent the money anyway, even if he said no?

Reading your posts, I’m not sure there are many practical solutions left. You don’t want to leave (which I understand), you don’t want to talk to him about the problems because he’s in pain and he doesn’t engage properly anyway (which I understand) and you don’t want to change the living room arrangements (also understandable that you don’t want to upset him in the circumstances). That leaves one thing that is potentially within your control and that’s throwing some money at the problem. As a household, you do have some money and I think you need to override your DH’s tight grip on the household wallet. Could you take unpaid leave for the rest of the summer? Get more practical help in the home, even if it’s just someone to help with meals and bath time? Pay someone to come on days out so you have an extra pair of hands? Book three nights at Centre Parcs so you get a change of scene and some activities organised for you?

Your DH may well be upset that you’ve spent money he wouldn’t have chosen to spend, but you’re currently carrying all of the practical burden of keeping family life going whilst also supporting a terminally ill husband. It is ok for him to carry the discomfort of you spending money in a way he disagrees with if it means you and your DC cope better. In an ideal world, a dying person’s wishes should always be followed, but you do not live in an ideal world. You’re trying to balance his needs with the needs of two young children and your own ability to keep functioning and the balance cannot always tip in his favour, terminally ill or not.

You can’t go back and spend money on nursery because that opportunity has passed, but you can put your DD on a waiting list in case a place comes up and I’d be thinking very creatively about any other ways money can buy you some breathing space over the next few months.

This is my concern as I said. You've said you can't challenge his decisions as the main earner - I see that differently but OK - but you will need to be able to make decisions soon. You haven't said if you have a joint account or where your main family income is kept, but you need to be able to make payments from that account and run it on his behalf, given how ill he sounds - to be able to look after him, you and the kids. If all the money's in an account that only he can control, tackle that immediately.

This will sound harsh but if you have access to the money, I'd use it as you see fit regardless of what he says. You are now running the household and looking after him and his kids. What's he going to do, walk out? Morally speaking it's wrong of him to accept you making all these sacrifices but hold back the one thing he can do to help you, financial freedom.

It’s not about me. I just don’t know if all these he’s all so awful posts are actually helping the Op. Maybe he has been a terrible DH & DF. But the Op may well look back on this situation in years to come and be thankful that in the thick of it she was able to push through & give him a level of support. Even if yes, it’s really bloody hard.

It gives me comfort to know I supported DF when he was dying.

It’s just another perspective on it. It’s not meant to undermine the OP’s needs.

OP do you have a ‘Maggies’ at the hospital your DH attends. Many oncology centres have one and hopefully there is one near you. If not they can be contacted online. They offer support and advice for exactly the situation you find yourself in now. Link is below. Hopefully they can offer some constructive support.

https://www.maggies.org/about-us/

OP it does sound from what you’ve said here that the DWP should be fast tracking his PIP application. Forgive me but this seems likely a terminal diagnosis, so if you already have evidence of that, or will be in possession of it soon then DH will likely qualify for PIP under the Special rules for end of life. You need to ask a member of his oncology team to fill out an SR1 and send it to the DWP directly. You should get a benefit decision within 10-14 days.

This. If he is soon incapacitated yo the point that he can't operate his finances how will you pay the mortgage and bills, for petrol and food?

OP I’m just a stranger on the internet but I would take your kids to the park for a couple of hours and get them a snack to give you a little break if I could.

Can you activate the Bat Signal and get your mates / neighbours / parents from school to help on this? Sometimes one person can swing into action and get a rota pulled together.

Very tough situation OP for all of you involved.

This might sound twee but when you're really feeling in the thick of it, big deep breath and the mantra 'this too shall pass' because it really will pass, and until then it's one foot in front of the other until you're eventually out the other side.

Can you get yourself and the kids some little treats that brighten your day, a favourite snack or chocolate, some flowers, etc. just tiny moments of joy in a sea of shit