To want to leave my terminally ill husband and disabled son behind

I'm so sorry op. Having brought up my severely autistic child over many years whilst very unwell myself, I have some understanding of how awful you must be feeling, even without being a carer fir your DH as well.

It is relentlessly awful to care for someone who laughs in your face, has little or no empathy, and needs 24/7 watching.

I'm a very amicable person as a rule but the situation turned me into a horrible version of myself. It broke me.

I could have easily walked out and left my son.

I even had carers to help for a couple of hours a day.

I know you must be at your absolute limit. It sounds a nightmare for all of you.

I really hope you will hear the support in many of the posts.

We can't know whether your husband is abusive or just shouting because he's scared.

Either way, you need support. Carers group or forum? GP? Macmillan? ADHD group?

Please know you won't be feeling like this forever. Sadly your DH will pass and your life will look different. I contemplated suicide a few times but now my son is happy and in a placement and I have a peaceful life to focus on me.

Hang in there.

But posters advising OP to leave her husband and child, give them some ready meals to fend for themselves or dump DS in foster care are supportive are they?

I understand OPs frustration and exhaustion and this situation sounds awful …. But what from the post suggests kindness and care for DS and DH in this scenario? Reference to the DS is “this child” does that sound kind to you?

Dumping and running isn’t kind either.

Its a terrible situation and ultimately one that’s going to get worse during the final days / weeks of DHs life.

Support from GP, MacMillan, counselling and perhaps some supplementary care for DS would help, but also there needs to be focus on this little boy because as tough as it is for his parents right now it must be utterly awful for him.

You seem very sure of this, given the very limited information from the OP. Do most men whose wives have cancer leave, I thought the majority stayed?

Hope you get some support from Macmillan. Any friends who can help?
In this situation I would take any friends child difficult or not.
I would cook for them and help with any errands.

Honestly I can hand on heart day my was far easier after my husband died. I had spent 2 years with anticipatory grief and after he died I could move forward and concentrate entirely on rebuilding mine and the children’s lives. The shock, horror, anger, that happened during the illness. The after, was very much a relief that the nightmare was over for all of us.

This is an utterly vile and smug post. The OP is at breaking point because of her situation and all you can do is berate her. Of course she doesn’t want to leave her dying husband or her disabled son. She’s the sole carer for both of them and is grieving as well. The care system is broken, and these situations arise all the time. Carers who have nowhere to turn, support that sometimes seems deliberately difficult, if not impossible to access, and care services who will happily abandon relatives to caring duties which will ultimately break them. OP should never have been allowed to get to the point where she wants to run away. Interpreting what OP has said in the way you have and then suggesting she access services that are practically non existent, amounts to a one poster pile on. You should be ashamed of yourself.

Your husband is the ADHD gene carrier.
Your sons ADHD is unmanageable because his fathers behaviour validates the behaviours your son’s ADHD brain will naturally adopt. It’s a case of nature (ADHD brain) and nurture (copying his fathers behaviour) reinforcing one another.

Exactly. He would be out quicker than you could say Jack Robinson.

I am pretty shocked by some of these replies.

OP's husband has terminal cancer. He must be terrified and is possibly in pain. A lot of posters on here seem to ignore that fact and have no sympathy for the husband.

Instead, there are a lot of comments about him being abusive. We have very limited information from the OP. Has he always been abusive or is this very recent? We have no idea. If I were that sick, I might be angry and scared and possibly would lash out at people sometimes. I hope people would give me a break, rather than telling me - like some are implying on here - that there is no excuse.

There are also casual comments about things being easier once he has passed. That seems very cold to me.

That being said, OP's situation is very tough too. She needs support.

If she is fed up of everyone, might the husband detect that? Which makes his situation even worse. I do hope the husband has friends and family more widiely whom he can draw on for support.

OP I have recently been told I have cancer. I am scared but I don't abuse my family.
Your husband is being unreasonable.
You do need to tell him to stop. I personally prefer Marie Curie to macnmillan. Ring them.
Get tough with both of them. I agree with others your son is probably copying his father. He's the adult. Shit happens and we hope to go to our maker in peace. You are not their punch bag. Find someone to talk to. Try the local church if you feel OK with that.

Hugs. Please vent as much as you can here.

YANBU for feeling as you do but you would be unreasonable to abandon the 5 year old child you brought into the world to the care system. But I expect you know that and are just exhausted really - I doubt you’d have a peaceful life even if you did put him into care

There should be more support for carers. Sending love. And as for your husband I can’t imagine how he must be feeling but there’s no excuse for abusive behaviour. I wouldn’t be surprised if the child’s behaviour improves once he’s gone x

OP can I tell you and please believe me this is literally the hardest part. Living in the limbo land of a half life with the terminally ill partner is absolutely completely and utterly hideous. It is actually, far worse than once the death has happened.

obviously your husband shouldn’t be abusive but he’s also scared and knows he’s going to die and he’s acting out. It’s horrendous. I know I wasn’t the nicest wife at that time and I mentally disengaged form him

People say you should be making memories and enjoying the time you have left but realistically when other are in this limbo you’re working towards getting through it and moving on to the after

although your child will obviously very upset when his dad dies I think it’s highly likely you’ll find it easier to manage him. Having one person to give him one message and to model the behaviour you want him to see will help

are you finally secure? If so, then do look at buying in help. As much cleaning help, maybe a SEN babysitter etc so you can have time for you

I feel for you but you’re doing great and you’ll be ok and so will your son

'@unmemorableusername

Well it sounds like you are the victim of domestic abuse and your DS is showing a trauma response to the effects of living with a domestic abuser.'

Completely agree with this. You need to remove yourself and your child from this environment.

Illness is never a justification for abuse and your son is likely being badly affected by his father's behaviour.

I would urgently speak to social services to make it clear you can no longer care for your abusive husband and you and your child needs an escape route.

Is him moving to an hospice a possibility? do you have relatives who could help?

Who owns the house you are currently living in?

Reframe this by seeng it as a domestic violence issue that needs to be addressed.

What an absolutely vile comment - ignore it, OP! The OP is clearly distraught and you write this. You need to work on your empathy and your spelling.

Do you have family support OP ?

Has anyone berating OP got any practical, workable solutions?

I think posters saying the OP’s husband is unreasonable need to give their heads a wobble. The man is dying. He knows it. We know nothing of how recent the diagnosis was made or how imminent it is. How would you all feel if you were suddenly faced with your own mortality ? No, shouting and bad temper are not the ideal, but they are understandable in this situation. OP shouldn’t have been driven to the point where she wants to abandon her DH and her son in the first place. That’s not her failure, it’s the consequence of a broken system and the resulting lack of support.

And to those of you happily recommending she seek respite or hospice care, get real. I’m 66 and physically disabled. My partner is a double amputee and is in heart failure. My 94 year old mother who has severe dementia is living with us. I have just been diagnosed with breast cancer. I’ve been at the breaking point OP is experiencing now, having had two lots of surgery, including mastectomy and having had to come out of hospital after day surgeries and be thrown back into caring duties almost immediately.

I am unable to access respite because all the care homes in the area have either been shut down or are acting as halfway houses between hospital and home for those bed blocking because they’re not ready to go home. My GP helps with medication to keep mum calm, and monitors my partners’ condition but I am still expected to do basic obs every day including blood pressure, and sugar, and report them in daily - as well as ferrying him round to various appointments, as they do not consider any of us to be housebound. I have a little family help from my partners’ daughter, and a private carer coming in for mum - who thankfully, has become a good friend and does a lot more out of kindness than I actually pay her for. Without her and support from MacMillan cancer services, I would have gone under.

Social services care was an expensive waste of money - there were supposed to be four calls a day for mum. In reality it was three, and sometimes two, because the morning call was non existent and by the time they turned up at lunch time I had mostly struggled to get her ready for the day myself. The evening call to put her to bed was supposed to be 9pm, but in reality it was mostly 5.30-6pm because they were so short staffed. When they did turn up they did the bare minimum and if a morning call was made, they wouldn’t shower or wash her without her express permission - which she was unable to give. Total waste of time and virtually wiped out her income.

OP my heart totally goes out to you because the support you need is barely there. In reality your DH won’t get respite care until he can’t manage his pain or other symptoms are overwhelming. My first port of call in your place would be Social Services to get a carers assessment - this is not for your husband or son, but assesses your own needs as sole carer to both of them. I would also get on to MacMillan and explain the situation to them - do you have a dedicated nursing team at MacMillan for support ? If so use it. Don’t be embarrassed and don’t hold anything back. Then I would contact your GP. Make an appointment to talk through the difficulties you have and ask them to signpost you to support. Many surgeries have services available to support carers in house, so may be worth enquiring along those lines.

You’re at breaking point and sadly this is common, but I’ve learned the hard way that the minute you accept responsibility, you will be left to cope. You are also dealing with anticipatory grief because of your DH’s terminal diagnosis, and you need help to process that, as it sounds as though it’s adding to the very heavy stress load you’re carrying. Can you ask your GP for a talking therapy referral on an urgent basis ? It also sounds as though your DH is struggling to accept what’s happening to him and is taking it out on all of you. It’s not right - it’s understandable, but he needs help to process his own situation. MacMillan should be able to provide some support with this.

I’m so sorry I can’t offer any better advice but I just wanted to let you know you’re not alone, and to stress how important it is to seek help and not minimise what’s happening. Unpaid carers save the tax payer a fortune and help and support should be there to avoid precisely the kind of situation you find yourself in now.

Edited to say that the Maggies’ organisation is really good. OP, if you contact MacMillan and ask where your nearest Maggies’ is they should be able to help you access some support, and there will be people there in similar situations to your own, so maybe a valuable opportunity to talk things over too.

Yeah @Collette78 but he's a boy and he's disabled. If it were a 17 year old girl causing havoc in the home, the thread would be full of posters falling over themselves to tell the OP that it was normal for teens, her brain wasnt fully developed yet, she should show her daughter more love and understanding, but a 5 year old disabled child - meh, disposable.

Yes, you can try to get support but I also want to say YOU CAN DO EXACTLY THAT

You don't even have to wait til he's dead, you could go now and SS will step in if his dad can't look after him

Hello, OP. I am extremely sorry about your situation. It sounds appalling. You are definitely not being unreasonable. You are under incredible strain. No-one should have to live like this and it cannot go on. There are some useful comments on here about where you may be able to get help; if you cannot get help, you will need to get out for your own wellbeing. Wishing you well.

I wouldn’t encourage people to place a child in care, however in this context there’s no indication the child’s welfare is being prioritised and OP is almost making him seem like disposable object.

Having children can be challenging, One of my DS is challenging in many ways.

Would I consider ever abandoning my children or not putting their needs before my own - absolutely not.

Some of the responses on here are accusing the DH and DS (who is 5!) of “abusing” the OP.

But not many are considering that this child’s needs and wellbeing are seemingly being neglected by both parents, which is abuse.

Theres also no empathy for the DH who is dying … I challenge anyone to be the best version of themselves if they are terminally ill, in pain and aware their existence is ending anytime soon.

Is it fair on OP to be in these circumstances, no, however if this was a post about a man wanting to leave a terminally ill DW and 5 year old he would be lynched.

You poor thing. I'm so sorry. Can you get more support with your husband's needs, is there a hospice, local cancer charity, Marie Curie etc. You have needs too and with an ADHD child I really doubt you had any extra time or energy to deal with a seriously ill husband.

Delay decisions about your son for now untill your husband passes and you both have some time to grieve or if that isn't imminent till things have stabilised with your husband. Try to get more support, school, social services but I know it can be incredibly difficult.

Thanks for this response. Nearly every comment on that person’s post was lacking in emotional intelligence.

But would she be verbally abusing him? Don’t think so…