Dh has changed since illness. What do I do?

[boysarelikehogs]

Nc. If you know me, please just keep it to yourself.

Been with dh 15 years, since teens. We've always been a 'normal', happy couple, established, secure and reasonably successful in all areas of our lives. In 2006 he was diagnosed with a degenerative, incurable, painful disease. The last 18 mths it has got worse so he is in pain, to varying degrees most of the time.

For context; he works ft, isn't visably disabled and is generally happy. He has an outdoor semi-physical hobby he loves. However, he has a Blue Badge, is registered disabled and is on very strong meds and under consultant care. He naps every weekend and does no night duties with the DCs (5 &1).

The problems are varied and I'm in bed on my phone so won't go into detail unless asked. The major thing is his temper. He gets so angry, shouts and can storm off to bed or refuse to speak to me for hours (or days). He also loses it with dc1 and makes threats such as cancelling Xmas or taking all his toys, or even smacking his bottom. Ds1 had anxiety issues and dh does this when he is freaking out about, say going to bed (dark etc). I absolutely don't tolerate this and quietly step in to comfort my child. He won't forgive me for days.

It makes me feel like shit. I cry all the time, I walk on egg shells, I feel I don't know him anymore. I am not scared of him physically btw.

I know he's like this because he's exhausted and in pain but what's the answer? I am seriously thinking about leaving him and it breaks me even to type it. I love him but he's changed. His own parents don't even like him much now, though they love him dearly. Please help, I can't go on like this, nor do I want this for my children, but I don't know why I can't imagine/don't want to leave. I want our old relationship back.

He is a decent man and is so scared and ashamed but gets defensive about his behaviour too. Crying as I type.

Just saw how that reads. I am completely supportive of him and his condition. I sympathise, help and try to make his life as easy as I can.

It's shitty and exhausting. I am so envious of other couples. I know I have issues about this too and try to maintain sympathy and not let any resentment creep in. I feel such a mixture of feelings for him. Sympathy, sadness, love, anger, resentment, tenderness, frustration.

Even just typing this helps.

I know, there aren't enough emotions
I live it
It's hard - I'm 20 years in - DH will never get better (although he is better than he was)

Does he know he is different - if he does it may become easier

Do you speak to his doctors at all?

Oh love I don't know what to say. What about counselling?

DH is poorly at the moment (had an operation on Thursday) and him being ill is getting me down even though I know he will get better, so I can fully see where you are coming from.

I appreciate that you won't want to give details that may out you but: is he ill enough for you to be entitled to any kind of respite care? Could his meds be adjusted to minimize the moods? I do think that ultimately you have to put the DC first: even though his bad temper and aggression is not your H's fault, that still doesn't mean that DC - or you - just have to suck it up indefinitely. It's not always possible to go on caring for a very sick family member at home when the rest of the family is suffering so badly.

I don't think he will admit to himself he is different. It's all been such a gradual slide and he gets so defensive. He is scared, thinks I'll leave him and feels vulnerable. He tends to deal with that initially by being cross so I rarely suggest it. He must know though. I should be more understanding perhaps. I feel I am already though, I put up with so much from him! But then, he handles it better than I would, I know. He'd be better with me than I am with him, more tolerant and thicker skinned.

katymac your dh is "better than he was" physically or emotionally?

Counselling may be an idea, my DM suggested that too.

It's not the meds causing the moods, it's the pain. Not bad enough for respite and doesn't require any personal care. He just can't do much beyond his ft job (ie at home).

It's true, the fact isn't his fault doesn't mean it must be my problem does it. The DCs are of course my main priority. They adore him but it must affect them and will continue to do so.

Thanks so much for replying.

Both - it took years to sort out the meds so they worked; once that was in hand the emotional side calmed down

DD is now at a age where she sees the injustice & we 'minimise' issues so he doesn't have to deal with them.

Counselling could be tricky, men are often reluctant, plus if the meds affect his temper she may not 'see' it & it may simply be too much effort for him

Can he cut his hours? He must participate in some family togetherness if he can manage it

I think you might benefit from some support aimed specifically at carers. I speak from experience here. Your circumstances mean that as well as being wife and mother you are now in this new and demanding ( often thankless ) role of carer.
Your DC are very young so there is a lot of pressure on you ( mine are teens now so life much easier)
I would also recommend finding age appropriate ways to tell the children that daddy is ill and that is grumpy behaviour is not their fault.

You need to keep yourself as mentally and physically fit as possible and build your support networks .Good luck

But his meds should control/minimise pain if they don't the dr's musts be told

There are lots of carer's associations (which are good at dealing with younger carers and chronically ill spouses, not just 55 year olds looking after dotty great aunt Ethel)

Your GP surgery should have a reasonable list of organisations who can help, or signpost you to somewhere. Most NHS trusts have a part of their mental health service which specialises in the psychological aspects of having/living with someone with chronic disease, again, your GP might do a bit of digging around for you.

www.careforthefamily.org.uk/pdf/supportnet/EFI7.pdf is a great article from a fantastic organisation..have a look round their website too. They have a helpline where they try to 'match' you with a counsellor who has been in a similar situation to the caller's own.

Oh and its not my business but neurodegenerative diseases like MS, Parkinsons and MND are often associated with depression and personality changes, (due to the disease process and also the person's grappling with the diagnosis and its implications) so please don't think that any of this is your fault for being too oversensitive x

The drs are being hopeless. They fiddle around with the meds but haven't quite got it right yet. I go with him to some appointments to support him and yes I agree, things would be better if he was more comfy.

I do tell dc1 daddy is grumpy because his body hurts etc but don't think he can take that in really. I keep saying it though as he will one day.

I would love to meet others in my situ but I'm not his carer, not really. I'm not just his wife anymore though either.

I am going to go to sleep now as will be up lots with the baby. Please keep posting if you want it's really lovely to be listened to and feel validated.

Katymac did you ever think about leaving? I sort of know I won't buy it's like a little thing I cling to when its awful like this weekend.

X post with timetosmile thanks so much.

His condition isn't any like those btw but thanks for thinking of it

You ARE a carer

ATM you are an emotional carer; but it will change over time, I'm sure

It sounds like he needs a referral specialist pain clinic, it might take a bit of pushing but they are around on the NHS so it is worth trying for.

You may not think of yourself as his carer but you are the adult who shares his life so you would be welcome at a carers group.

So he's well enough to work full time and have an outdoor physical hobby, but not well enough to do anything around the house?
Does he lose it with the people he works with and shout and threaten them?

Ask his doctors if making threats and being angry are really part of his condition or his meds. If they are then you have to consider living separately it isn't fair on you or the dc.

In sickness and in health does not mean putting up with abusive behaviour even if it is caused by his illness ....(which is doubtful) .

If they are not part of his meds or his condition you need to make your boundaries clear to him.

It is a difficult choice but who do you chose to support ? Your ds with anxiety issues or your dh with anger issues ? The latter will make the former.s issues worse for sure...
Threatening to take Xmas toys ? Not on.

He can get help In channeling his frustrations etc ...He has to be actively seeking this help. It isn't fair to take it out on you.

You can seek help for you talk to carers orgs, get some counselling via gp, sort out in your mind what is acceptable what isn't. Where your limits are.

Then tell him so calmly and see if he is prepared to accept his anger is not on... If he says he is allowed to act this way because he is sick then you have abig problem . But you are not obliged to live wi him 24 7 if it is too much ; you could eg acces respite for him or arrange yourself eg he spends time way with friends or relatives to give you a break.

And if he is exhausted he should cut his work hours and his hobby so he is less tired....

I am so sorry to hear about your problems but I think you need to have a long talk with your partner.

Can you sit down with him and say calmly that his temper is becoming a real problem for you - to the point where you are thinking about ending the relationship. Tell him that you understand that he is in pain, and that you sympathise, that he has a shitty illness - but that he is destroying his relationship with you and his children in the process. That you are doing your best to help make his life as easy as possible but that you can't stay with someone just out of pity for his problems. That you want your old relationship back and that he has to put some equal effort into working to get it back on track if he is not to lose his wife and his children. I would emphasise to him that it is not his illness that you can't cope with - it is his temper and his moods.

Good luck.

Boysare, My DH is in your shoes. I have health problems that mean I'm in constant pain, ranging from sore-but-manageable to excruciating. To the world at large, I look normal-ish - I limp/move awkwardly at times, but I have a fulltime job, I'm immaculately turned out when I leave the house - on the surface, it looks very copable. I'm 42, btw - relatively young for what I have.

First and foremost - your DH is WAY out of line. What you describe is him going off in a sulk, and choosing to withdraw from family life - read your posts again, and remove the knowledge that he's in pain. Is that an acceptable way to behave towards your wife and children - not forgiving you for days if you challenge him, losing his temper with small children?

His fatigue due to his condition may explain his initial reaction, but the way he behaves after that is a CHOICE.

I don't know what he's dealing with exactly, but what I do know is that he isn't entitled to take it out on you and your children. He's choosing to let his illness be the scapegoat for his behaviour.

It's very, very hard to get hit with something debilitating at a young age. You're angry, you have dreadful guilt at what you're putting your partner/children through - I know my DH didn't sign up for what he's got.

But that does not give you the right to behave any old way, and assume your partner will excuse you 'because you're ill/in pain/whatever'.

I'm short/snappy/difficult some days - DH now calls me on the first narky comment, and points out how irritable I sound. 99 times out of 100, my response is 'sorry pet, didn't mean to sound ratty - crappy night', and I then take care to think about how I speak to him and DS after that. But I need it pointing out to me - and I had to learn to take a deep breath and accept that I was behaving badly, rather than just erupting at the criticism.

No idea if any of that helps - if you'd like to talk via PM then let me know.

hi boys ~ you've posted mucho good sense in threads for me over the years I really wish i could be more use. Except to say I feel for you. my DH is currently having chemo and is permanently often grumpy and very shout at the dc. Yes we understand its the illness and not them, but it doesn't change the effect if the behaviour. We have also explained clearly to the dc that it is the treatment and the illness, and tbh he does make a lot of effort to spend good/enjoyable time with them when he is having good days. I do complain at him when he shouts and make it clear all round when he's just feeling grumpy because of pain or treatment. That said, I honestly think we would all say we'd run away given half the chance. its about feeling like you have a bit of control, and you're there because you love him not because you're stuck with it. That's how I understand it anyway.... how it is for me I suppose. I love him more than ever and life is so precious, every day, but it doesn't stop me feeling frustrated, sad and a whole pile of emotions I can barely untangle. sorry if that's all a rubbish ramble and a bunch of assumptions

He also loses it with dc1 and makes threats such as cancelling Xmas or taking all his toys, or even smacking his bottom. Ds1 had anxiety issues

I'm sorry but this would be the bottom line with me.

I too have a chronic and painful degenerative condition. I struggle, a lot. I don't sleep, I have a job and DCs and sometimes am so exhausted I could just collapse into tears - which of course doesn't help with my pain. Sucks.

But my husband and children don't need to be on the recieving end of my frustration and worry about the future, or have to bear the brunt of my mood because I'm sick and sore and tired. It's not fair when they already make so many sacrifices for me. If I am at the end of my rope I say that I'm feeling poorly and to take it gently. If I'm cross or overeract then DH pulls me up, away from the kids. If I'm on my own with them and have been in the wrong with how I reacted to something I will always apologise and tell them I'm sorry and I love them and didn't mean to be mean. I'm not perfect so when I get it wrong I let them know. Most of the time there is no need because I make sure I manage myself and my condition. At the end of the day it's my responsibility - your DH is not taking responsibility for his actions to the point he is alienating his family. If I behaved as your DH has done then my husband would take the kids, he wouldn't stand for anything impacting on them like that considering how much an ill parent affects them already. He needs to see what his behaviour is doing to his wife and children. Yes you need to support him and you are, he needs to talk to you about how he's feeling and his fears and you need to listen but you don't need to be put in this position. The only person that can change this is him - he needs a reason to do it and personally I would be frank - I'm not going to leave you because of your illness, I love you but I will be forced to protect the children from this behaviour if you don't change it, I'll support you all the way but only if you get help.
Push for a pain clinic referral, a second opinion can be sought if his current doctors are rubbish (I've been through 4 teams until I settled with a Consultant that actually helped me), push him to manage his treatments properly and sleep patterns most effectively and remind him that he still has priorities.
He is ill and sore and probably scared and exhausted, you are doing your best to minimise his stress. You are important too.