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.

Of course you can leave! I would. He’s been a rubbish father so far and you owe him nothing. Put your kids first.

It’s all a bit vague, we don’t know much yet. Which is one of the worse things.

His chair is a specially adapted one but it won’t really fit anywhere else. It plugs into the wall. No one from specialist seating visited, he just bought it. I guess the point is that it’s the only place he isn’t in huge amounts of pain, he sleeps there sometimes. We can’t keep moving it about.

@NeatPinkFinch i really couldn’t, even if I wanted to which at present I don’t.

You can’t stay in a situation that makes you and your children unhappy and has done for a long time just because what will people think!

@NeatPinkFinch that’s over simplifying what I said a bit.

Where will we live, for starters? What’s the relationship with PIL likely to be like after I leave their terminally ill son? Money - hate sounding crass but it’s a biggie. Leaving someone in agony alone doesn’t sit well with me.

A close friend is in a similar situation but further down the line. Her DH has always been domineering and abusive, both financially and emotionally. Now he has an illness and is immobile and has lost his job. What was an awful life for her has got immeasurably worse and she is a shadow of her former self and now is becoming unwell from stress. She’s feels she can’t leave as he’s so dependent but all she and the DCs get is abuse and anger from him. You need to protect yourself and your DCs as this is only going to get a lot worse for you. Leaving has to be a serious consideration.

OP I hope my post does not annoy you. But -
Why can't his special chair be moved to - say - a small bedroom? Can you not get ''workmen'' to solve such a move?
Why is DH not getting better pain control? Is he not taking it or is the doctor not doing his ''job''? Is he getting chemo yet? How long since diagnose? Are you pushing for more information from NHS? Will he have surgery soon?
If he has a very highly paid job and is still being paid - why can't you afford help for child care? Tell him how YOU feel.
Tell him you and DC cannot be out all day because he is working unnecessarily?
Has he life insurance?

Can you live separately but still do an element of care. Get him a ground floor flat, with special stuff that makes his life easier. As far as people on the outside are concerned, the house isn't suitable for him and his needs.
Is he insured? You can claim on insurance when you get seriously ill, this could pay the mortgage down if you have one. You can stay in the house and claim benefits. If you're renting they contribute to the rent. If you're on a mortgage ring them and explain DH has incurable cancer and can you move onto interest only payment.
DH can keep working at his flat to pay his rent, and if he loses his income can claim benefits.

When he finishes work you can bring him home for dinner. You can go in day trips on the weekend. Him being there but not there is so much harder than him just not being there. And you can start getting used to being alone. And focus on this time with their dad being about making memories.

That could really help you both. A flat would be easier for him as time goes on. And having set time with the kids will make him appreciate it and want to make it worthwhile. You will have space to live and be able to give him more help when you do because you're not drowning all the time.

You are coming up with a lot of excuses. You’ve been a single parent since day one. The bottom line is this is terrible for your kids and you’ll lose their childhood to it if you stay.

My DH has stage 4 cancer although we are much older than you OP and DC are all grown up. I have also had an early stage cancer some years ago which was cured. I think the time when you know it is cancer but not all the details and prognosis are the hardest. Once you know the bottom line you can start to get your head around it and make plans. You say you are awaiting biopsy results so maybe when you know exactly what you are dealing with it may help a bit. You seem to think it is terminal but then say it will probably go on for years. The word terminal actually means the person has only six months or so left and treatment is not working. DH is stage 4 so not curable but is not terminal and may not be for years. He is not in terrible pain however and leads a fairly normal life in between treatments and appointments. If you have actually been told your DH is terminal OP then this is not going to be a long term issue at all (sadly for him). If however he is merely incurable it can mean that he could go on for years with treatment. The presence of intractable pain however doesn't seem like a very hopeful sign. You mention Macmillan, but depending on what type of cancer he has there may also be more specific charities with support forums you could join.

Im really sorry you are having such a difficult time.
You sound in a combination of burn out and shock.
Do you have any family or friends who can help support you?
From what you say,although without firm diagnosis,treatment plan,prognosis,its difficult to tell what the future holds butit seems your DH is in pain and denial about his health. He sounds like he is on auto pilot atm,what i can tell you from experience (my husband died aged 48 yrs of cancer) that his health will stop him from continuing in this way sooner or later...I hope you get a treatment plan and prognosis soon as it can help facilitate support for you both.
You need support with the kids asap ,do you have any family/friends that can help?
Your DH needs support with his cancer diagnosis and emotional wellbeing,can you talk to him about any of it at all?
When my husband was dying(he could have been yours from your description,workaholic and absent even when present a lot) i asked himif he had any regrets now, he said he did,he wished he had spent more time being with the kids and i rather than flogging himself for money,he said he thought ot was the right thing to do but now realised how wrong he was.
Anticipatory grief doesnt hit everyone ,sometimes it comes later but you seem to be grieving what he and the kids have missed out on by him not being involved in their care through the lense of the effect it had on you (which is understandable)
You do seem angry too and thats a normal part of grief.
I hope you can get some support IRL.
Take care of yourself.

This OP. I started over with a tiny baby and a toddler so I know it can be done.

Just to say that community palliative care sometimes get involved as specialists in pain control even if palliative is not where things are. You could request a referral to them from his GP, and you could do that without dh’s permission, though I’m sure the GP will ask him.

It does sound as if he has no ability at all to listen to you about anything. What he says goes, it seems. No wonder you are infuriated.

Such a short term.fix / plaster on a gapping cound bit could you get membership tp Whipsnade/ odds farms/ willows / Chessington something likr that and just get the kids out

I had a similar situation and found a packed lunch and off we go felt like more work bit was actually way easier.. better energy I was in fresh air kids were happy everyone having a relaxed time

Tbh I would start making unilateral decisions - it's what your husband does, with very little consideration of you or your children's needs. So although it's too late now, when situations like the nursery one arise again, you just book it and pay for it and don't even ask him. Doubt the selfish fucker would notice anyway. And if he does, you simply tell him that since he's monopolising the house, and contributes nothing to their care, this is what you are going to do for your child's and your own benefit. Even if it goes on a credit card.
Match his energy. Take him out of the equation when it comes to decision making. You can't change him, so let him work until he drops if that's his choice.

Personally, I'd rejig bedrooms to put him upstairs - if it's physically possible to move that chair I'd get it upstairs and reclaim your living space. It might be that he gets your bedroom and you get a good sofa bed for the living room and separate out your lives. Or better still, put all his stuff in the living room and turn it into a bedsit of sorts and convert your own bedroom into a living space upstairs.

Try to talk him into moving back in with his parents, at least for the summer. If he is terminal and in a lot of pain, then hospice would be better because they can manage his medication better than at home - really try to talk him into it.
But if he refuses, then follow the separate lives as much as possible route. Make sure you have access to money in your own account in case he gets belligerent. But if his whole focus is work, to the exclusion of his kids and you, I'd leave him to it. Don't take on nursing care when the time comes - he doesn't deserve any more of your energy.

Thanks @Willowskyblue . In many ways he isn’t that bad, I’ve painted him in an awful light here and he does have good points, but equally he’s definitely left parenting to me and it’s hard not to be resentful of this.

@tara66 if doesn’t annoy me, it’s just kind of not the point (in turn I hope that doesn’t annoy you!) It’s more that is symptomatic of how things are. DH wants to work so here he is. I and the children don’t exist. Even if he could move the chair, he’s still in the house all the time (which in itself is unhealthy) but no one can easily move it anyway. It’s a big, cumbersome thing and we have an old cottage with narrow doors and passageways from a time when people were rather more daintily built than now!

@NeatPinkFinch if you cannot understand, if you can’t see why not leaving now is being ‘full of excuses’ then you really, really don’t understand at all. At the best of times, relationships are complex and multi layered and you can feel multiple things at the same time. I’m feeling frustration with DH, and some resentment. I also love him as the father to my children and someone I’ve shared a journey with. I feel very very sorry for him, I feel helpless as I want to take his pain away, some guilt I didn’t take it seriously to start with, grief as as much as I don’t think I feel any real personal loss our children are going to lose their father and they’ve already lost him in a way and while he didn’t read them stories or remember their goggles he did do other things and they of course love him as their parent. And somehow, while I’m caring for them full time I am supposed to find a solicitor, divorce DH, sell the house, pack up the house, rely on maintenance money from DH until he passes away and then what, and when my children ask why I left their dad alone to die I say ‘well darling, he was not very helpful once.’

So yes, you are over simplifying I’m afraid, and before anyone accuses me of being ‘angry’, I’m not, I’m lying on the bed checking DD is definitely asleep next door with a sneaky bag of Skittles and a bottle of Pepsi max, I’m quite calm and chill, I’m just explaining.

@SalmonOnFinnCrisp thanks, I have a couple of memberships but it still works out costly with ice creams and so on. I think it’s more the lack of time I’m spending with the children, real quality time. DD and I used to spend ages doing her puzzles and reading; ds and I used to go for nature walks and stargaze, it all feels so stressed now and harried. (I’m painting a very one sided picture there; I often felt like I was losing my mind with them as well!)

He’s under the palliative care team; thanks.

He can’t move in with his parents, apart from anything else they aren’t local and he is under the team at our local hospital. And then the chair (I know, everyone’s sick of the chair! Including me!)

A childminder may have space over the summer and ours was much cheaper than a nursery.
It sounds like an awful situation to be in, even before the diagnosis, the fact you were pretty much carrying all the load would have meant resentment would have crept in.
If the chair can’t be moved/home moved around it sounds like options are non existent so I totally understand you pulling your hair out, which you don’t feel like you can express because of his health battle.
Do you have much of a garden, could you put a garden room/summer house in for the children to base themselves from on nice days?
Or (I know you’ve said it can’t moved) but is there a way to get the chair upstairs into your bedroom and let him take over that room? I think I’d rather him up there and out of the way, even if it meant sleeping on a sofa/sofabed.

I dont think you should leave now @aponyatblackbirdcottage , not least because you don't want to for lots of valid reasons.
Wait for the prognosis, and any treatment plan, then see what your options are. It is unlikely this is are going to go on like this for years and years - in fact Im sure they won't. Either he'll get better (if not cured) or he'll deteriorate.
Is your dh quite emotionally stunted by any chance? I get that he's a workaholic at the bedtime of times but his current state makes me think he's working because he just can't deal with what's happening to him.

To be fair, sometimes it's really bloody hard dealing with a cancer diagnosis, let alone a terminal one. People cope in different ways including trying to carry on as normal with work as it stops them thinking.

I see you.

My DH has chronic illness whilst my children were young and it was so so hard. But I also get when you mean when you say they didn’t do their best regardless of the situation. He also hid at work and prioritised that during the “good years” and then when the bad ones came back he’s even more difficult.

I coped by basically checking out of the “teamwork” aspect of the relationship. I set everything up so I could cope on my own, that I didn’t need him. You don’t need his permission to send a kid to holiday club; you can just do it. You will need to build a solo life and so may as welll start now.

How are finances etc? Can you afford to separate but still cohabit ?

Have you applied for ESA, if you do speak to Macmillan they can advise you on any benefits you maybe entitled to.
I should imagine some of your feelings are related to possibly facing the future without him and having mixed feelings about that, about feeling as though your options have been taken away from you. That you feel more put upon than ever but are expected to feel more empathetic than ever. A really tough, crap situation, frustrating and upsetting for you all.
Hoping you get a little break in some way soon and things get easier.

I've only known a couple of people closely with cancer, so my experience is limited and potentially leads me to incorrect conclusions. When my relatives started to need adjustments for sitting in pain it was stage 4 in the bones. If he is still working and has the energy to do so maybe it's not Stage 4 and the cancer is just in uncomfortable part of the body.

I am surprised by the lack of information you have been provided. The outlook doesn't seem great.

@aponyatblackbirdcottage im really sorry to read this it sounds awful for you all.

do you have a local hospice near you? Ours does children’s workshops which are free and they do craft sessions/ sports/ music etc, I wonder if something like this might be available in your local area?

I think once you have a formal diagnosis and you are aware of a potential prognosis, it’ll be easier to plan and make arrangements for now and for the future. I’d encourage engaging with MacMillan they really are amazing people and can support with all sorts of things.

Until you know his prognosis and if any treatment can be offered it will be difficult to plan anything. If you are in UK usually a Community Nurse Specialist will be allocated for him and you both will receive some helpful advice. He isn't likely to be able to co-parent now which is tough for you but he will be finding life hard now.

Just divorce him and separate, he didn't deserve his family before and doesn't deserve it now