DH shoved and called DS names and now I'm stuck between them

[UltraBlossom]

Long post alert but a lot of it is context soi've tried to make it easy to read but scroll to the issue if you don't want to read it all I don't want to drip feed though

My stepson has just turned 19 and he has epilepsy and a heart condition and DH has to do a lot for him than the average 19 year old, making sure he takes his meds at the correct times (he is capable of this but he rebelled and started to refuse which made him very unwell so DH has taken over giving them to him and making sure he actually has swallowed them), taking him to his neurology and cardiology appointments and sometimes staying with him at night if he mentions feeling off or if he's had a seizure close to him going to sleep and SS asks for this

CONTEXT

His mum passed away a few days after giving birth to him and so DH was left with 2 DC including a very sick baby with a heart condition and he did think he was going to lose him too as he was put on palliative care for a few months until he shocked everyone so DH is naturally very protective over him maybe too much at times and then he was diagnosed with epilepsy at 11 so it was an additional thing to worry about.

We have 3 DC together now (5, 2 and 16 weeks), DH didn't want any more children previously but changed his mind and despite him having therapy he was extremely anxious during the pregnancies about losing me or the baby and didn't want us to get care from the hospital his late wife and SS were at even though it was 14 years prior as they were found to be negligent in both cases. The hospital we did go to were understanding and the midwives were lovely in all 3 pregnancies, we had extra scans at fetal medicine to check the baby's hearts (and all 3 are fine and healthy in detail as stepsons condition wasn't picked up on the scans and DH kept telling them something was wrong with him but because his late wife had just passed away it was put down to him being over anxious

DH is his full time carer and he's just finished college this year and so far has no plans for anything so they're together pretty much all the time (I'm also home too currently as I'm on mat leave) but SS wants independence I think. He did have friends at secondary school but about 4 years ago (when he was 15) had a seizure in public and they left him and then told a member of the public he was messing about luckily the member of the public ignored them and called an ambulance and this added even more anxiety to both SS and DH - DH about something happening when he isn't there and SS about going out on his own. He now has 2 friends from college but doesn't see them often

Both my DS (22) and SD (26) were trained in what to do in event of a seizure from when they were relatively young, our 5 & 2 year old knows to shout for one of us and to not touch him, thankfully they've only witnessed one seizure which was in the living room and it was last week, I was out with baby at the time and our 5 year old was brilliant bless her she shouted for DS and DH who were in another room and stopped our 2 year old from going near him and then DS took them out into the garden whilst DH stayed with Stepson but DD was quite upset after which made SS feel worse

THE ISSUE

Alot of our life is ruled by SS and so we booked a weekend away at Haven just the 3 younger one's and myself and DH as DH also needs some sort of break he's exhausted as am I dealing with a baby and a toddler mostly on my own. DS still lives at home but also is at his girlfriends a few times a week so he was going to keep an eye on SS. However SS convinced him on Saturday night he was fine and DS went clubbing. He checked on SS yesterday but he kept telling him he was fine and DSwent to see his gf and slept there last night.

SS went on a date with a boy on a dating app apparently it was their third date (we didn't know any of this int today as the other 2 were when he was saying he was seeing his friends). We got back this morning about 9am and DH went into stepsons room to find him in bed with said boy asleep. DH was furious that he was in bed with a boy. We knew he was into boys (I think SS goes by bisexual though I'm not 100%) as he was outed to us when he was 17, DH had more of an issue with it and went to the pub and they had a long talk and said he essentially didn't want to meet any potential partner until he knew they were serious and told him he was not to invite them round or just sleep with random men he hardly knew because of STD’s and how they’d treat him

It turns out during the date SS had had a 2 seizures (the boy told SS - he doesn't remember) and the boy had brought him home and then SS asked him to stay because he felt off and thought he mightve had another seizure didn't want to be on his own thankfully he didn't

DH shouted at him for inviting a random boy into his room and our house when he was alone and he shouldve called DS or him and he then turned his attention to DS when he got home this evening and asked why he didn't stay with him etc etc said he could've died and asked DS if he wanted that, called him a silly cunt and a stupid twat etc. SS then was crying and said he just wishes he was normal and DH blamed DS in a “now look what you've done” way and when DS pointed it out that it was DH who was shouting he said he wouldn't be if he'd done what he should've done and shoved him.

DH doesn't see he's in the wrong and has been snapping at me too and said I wouldn't like it if the roles were reversed a it was my “precious DS” instead and stomped out, DS has gone back to his gfs so now I'm at home and don't know what to do. I'd like an outsiders pov if possible / advice as I feel stuck between both my son and my husband

I think your son was a little out of order, he agreed to stay home and watch SS, and went out clubing instead, it was one weekend of staying home to support family.

If he had said no, then I think
that’s a different story. Obviously your dh shoudn’t shout and swear at anyone, and he owes ds an apology.

Ss needs to become more independent, and he is entitled to a romantic life, although I’m not sure that means he gets to bring people back to the family home.

Im also amazed that your dh went from not wanting anymore children to now having 3 more.

I think there needs to be a plan for how the DSS is going to be able to build more independence. Or else his dad will never let him do anything.

I think you probably get better answers from parents who have older teens with not well controlled epilepsy.

Yes step son is 19 but he does need someone with him all the time especially if his seizures are severe. Its not babying him its fact of an adult who has uncontrolled epilepsy.

But the dss is an adult with capacity who asked to be left. Not a child with a babysitter.

It may not have been a wise choice, but adults are allowed to make unwise choices.

No one, including his dad, gets to supercede an adult's capacitous decision about their own health.

There is no 16 year old. There is a 16 week old baby. SS 19, and OP's DS 22.

Your husband is clearly out of line and needs some therapy to try and unpick his past trauma and how this has led to him having an unhealthy attachment to his adult son.

Why is your stepson having seizures so frequently? It’s unusual for epilepsy to be so poorly controlled after this long on medication. Is your husband definitely giving him the right medication? Is he going to his clinic appointments?

[Deleted this part because I thought OP’s son was 16 but he’s actually 22]

I may be way off base here but it seems like your husband effectively wants to keep his son in an almost childlike state of dependence. Is your stepson getting the support and medical care he needs and is he being given as much independence as he can safely manage? Why was he refusing to take his medication? Most young adults are keen to get their medication right so that they can have a normal life and be able to drive, work etc. Unless there is some further issue like a learning disability, I feel like there are potentially some significant safeguarding concerns here.

Its so much more nuanced than that dealing with young adult with epliepsy.

He isnt an average 19 year old, he isnt medication compliant. Teens and epilepsy is a whole different ball game

We've never expected either my DS or SD to care for him or the younger children, they know what to do and the older 2 are trained in seizures but we've never relied on them. But we went away to haven which is aimed at young children so we took our younger one's and left SS at home with DS to keep an eye on him in case of seizures and to make sure he took his meds

I doubt SS was lying about the seizures he had as he does seem to be how he normally is for a few days after a seizure (just not really with it - its hard to explain).

I do understand why DH was worried about if he had had those seizures at home when he was alone as he also sometimes vomits during them which is amother risk due to choking etc but thankfully he wasn't on his own and the boy he was with did help him and stay with him the whole time but DH asked him if the boy had hurt him to which SS was confused about and said that he'd actually done the opposite and stopped him from hitting his head

He doesn't have learning difficulties as such but he does have dyslexia and dyscalculia and yes DH said no to children for a while but our first together was unplanned but we were happy about it (apart from DH’s anxiety) and then we had our 2 year old and our baby was unplanned again as i’d just started a new contraceptive!

You're not stuck between anyone.

You have a husband who likes throwing his weight around and is homophobic and you have a son who is happy helping out caregiving his step brother

The whole issue was caused by your homophobic controlling husband

@Restlessdreams1994from personal experience, it is not at all unusual for epilepsy to be uncontrolled, there’s a process of trial & error to see which meds or combination of meds work & sadly this can take years & for some people, the meds will never completely work. There is very little resource put into epilepsy drugs compared to other conditions. People wait years for neurology appointments on the NHS. OP, this is a hard situation but SS & DS have done nothing wrong & your DH needs to understand that & apologise.

What a mess.

Going forwards, don't ask or expect any of the siblings/half sibs/step sibs to take responsibility for the stepson. He is allowed to make his own choices and decisions, even if to the onlooker they are poor ones.
Parentification is a thing, don't let this develop further.

Your husband needs to be cross with himself not with any of his offspring.

Can you start a dialogue about supported living for the stepson - his dad cannot be his sole carer all his life, and the stepson needs to have his own life, including relationships and all they bring.

I feel sorry for everyone, honestly. Epilepsy is a horrible illness for the person, and it is exceptionally stressful for everyone around them. My first love had epilepsy (we were together in our early 20's) and ultimately died of sudden death in epilepsy syndrome. I know her mum felt much the same about feeling as though she needed lifelong support, but my ex ultimately grew up using drugs as a teen, and into a very angry and horrible partner (imo due to the stress of her disability and severe uncontrolled epilepsy). She struggled immensely with the lack of freedom associated with her illness, and things like not being employable.

What I will say is, despite his illness, SS is an adult. You have made no comment on his intelligence, therefore I presume he has capacity. He has to be allowed to live his own life. You can't eliminate risk. There is risk in everything we do. He needs to be allowed his independence with some safeguards in place. I had a friend at uni who lived independently with epilepsy and regular seizures, and I believe she lived with things like sensor mats next to her bed, a falls alarm, etc. Your son needs to have the confidence to date and make friends. You know he may have a seizure. He cannot have someone with him 24/7 his entire life. You just have to make it as safe as it can be.

DH was wrong here to swear/become abusive, but it sounds like he's traumatised and tbh lives in fear of his medically complex child dying. He needs some support around this. DS is clearly not a vile man like some are saying. He behaved horribly in this moment, but underneath it he's a terrified parent. He's scared of letting go because he doesn't want his son to come to harm, but he can't spend his entire life supervising SS. It's not healthy for anyone.

As for DS, he's honestly doing what young people do. SS can take some responsibility for his own health, and he told your DS he was fine. Your DH needs to understand that. SS is capable of making his own choices. They may be risky ones, but they are his to make. He needs to apologise to both of them.

SS does see his neurologist regularly and they do try different medication etc but he still has seizures often and usually tonic clonic ones which take a few days to fully recover from both physically & mentally because he's just so exhausted and out of sorts. Since he was first diagnosed at 10 he got given the right meds almost instantly and he regularly went 2/3/4 months without a seizure but since puberty (and another heart surgery he had which may just be a coincidence ) they've definitely increased and now he's hardly ever a month free they happen weekly and sometimes multiple times a week. His biggest trigger is lack of sleep but he also struggles to sleep sometimes no matter how exhausted he is. They've also got worse if anything like I said above he vomits during them now and sometimes wets himself which causes him a lot of distress and embarrassment

I think a lot of posters on here have very limited understanding of epilepsy and the level of impact it can have on someone.
Things like posters saying things like your SS should be able to manage his medication. In the ideal world yes but in reality epilepsy can take so much from people. The confusion and disorientation pre and post seizure can easily result in missed medications. Equally a frightening percentage of individuals with epilepsy don’t have good control over their seizures. Drug resistant epilepsy affects a lot of people. Drugs can also become less effective over time.
it is nowhere near as simple as take this medication and you will be seizure free sadly.

Does he have anything for sleep? My son had seizures when small and also now has a sleep disorder (you'll know they can go hand in hand) and since starting melatonin we've been seizure free for 2 years. There were other factors at play but sleep was definitely a big factor.

So quite different as my dd has narcolepsy rather than epilepsy, but one of the hardest things for me when she was growing was accepting that sometimes she’s going to make choices I don’t agree with. Just as her siblings do/did. And sometimes those choices are riskier for her because of the narcolepsy, but she’s still a person - she’s going to make bad choices, she’s going to make mistakes and occasionally she was very much “fuck it I’m pretending it’s not a thing”.

It’s so hard. But your DH has to accept that as n adult, albeit a young adult, his son has the risk to make choices. He even has the right to make choices your DH doesn’t like. I was driven to despair with DD at one point when she wouldn’t take her medication and her cataplexy went through the roof. To me it was simple and logical - medication helps - but to her medication was an annoyance, a thing that made her different and something in all the brain fog she sometimes genuinely forgot.

He owes both his DS and yours an apology for over reacting. His overreaction is understandable, but that’s not the same as acceptable. He needs to apologise.

He also needs to work out how he’s going to cope going forward when his DS makes choices he doesn’t like but that is going to happen. And it should happen because his DS does need to live his life as best he can. Your DH will also be much more effective in guiding his DS if they can discuss things calmly, and DS can confide in him about mistakes or bad choices, without your DH flying off the handle.

You are NOT "in the middle" of anything. Your DH is blatantly abusive to your SS and your DS. You need to get your DS away from his abusive father, and help your SS (who is legally an adult) to get the support he needs to stand on his own two feet away from his abusive father which he could do despite his disabilities.

@UltraBlossom poor SS having to live with this condition which isn’t under control. He needs to be able to live a better life. If he’s taking his meds they are clearly not working for him. Go back to the GP.

The other kids/adult kids need to be able to live their lives too.

You said your DH is SSs full time carer. I’m assuming he gets carers allowance for this. Then he should have stayed at home and done his job or insisted the 19 yo go with you all.

Who's at fault? Your DH for going on holiday without SS. However, your DS also. if he said he would stay with SS and didn’t.

I hope you can get your DH some therapy so he can manage his fear and the resulting rage.