Advice please

[Custard4rhubarb]

Hi,

I am long time lurker who has only ever had one previous foray into posting. I am seeking some impartial advice about my relationship. I have tried to write this as objectively as I can as I am very aware this is only one side of the story.

5 years ago my husband experienced a life changing illness that has both physically and cognitively impacted him. I have always been clear that marriage is in sickness and in health. I am now struggling with what to do.

He is moody, aggressive in language (at inanimate objects like his shoes) and throws things/hits things if he gets really frustrated. We have two DS who are now seeing this as a way of dealing with frustrations.

I do not feel attracted to him anymore, less because of the physical impact (although it is a factor) but more due to the character change.

I am the main breadwinner since his illness and he is not capable of being a stay at home dad due to his physical limitations. I also worry about his temper, he is not violent but the shouting is distressing.

He has had some counselling but it's impact seems to have wained.

So my question:
If I leave (or rather ask him to leave) he can't look after himself so would have to move back in with his mum. That would be awful for him as they have a very difficult relationship. If I don't I have another 40 years or so of this pretty unhappy life. Neither of us asked for this illness. I just don't know what to do for the best. There are of course two DC in the middle of all of this too who need due consideration. I came from a broken family and always said I would protect them from that.

Any advice?

Does he realise how unhappy you are?

That is a good question; I don't know. I have told him lots of time how exhausting and difficult I find his continual shouting and swearing at stuff. I have always steered away of making any comment on how I feel about him as once it is said I can't be un-said. That is partly my reason for posting this to try and explore what I really feel.

You're unhappy and you no longer are attracted to him (understandably). Nobody would blame you for leaving him. It may not be nice for him to live with his mother but does his happiness trump yours? It's not nice for you or the kids to live with him.

If he needs care he would be entitled to an assessment from social services to see about them meeting his needs instead of you.

Though admittedly, funds are scarce and they will try to avoid paying for him if they can.

Thanks I appreciate your input. He does receive PIP payments due to his care needs but I have always done the caring up to now.

Personally, I couldn't live that way. It's one thing to support your husband because of a disability or illness, but it's quite another to be forced to deal with constant emotional abuse and to raise children in that environment. I would tell him he either gets help and changes his behaviour or he leaves.

I am severely disabled, my illness has turned our lives upside down, I am currently bed bound, catheterised and haven't been able to walk/ wheelchair bound for just over five years. My life has changed completely, my husband's life has changed completely as has our two children's. The difference however is that I would never and have never been abusive! I don't shout or swear and I would never behave the way your husband is behaving! I'm not suggesting that your husband be a martyr, but he should be trying to adjust his behaviour so that your children and you are not badly affected by it.

Has your dh had any counseling to help him come to terms with his new body? Have you had counselling to help you come to terms with your new role as a carer? If the answer to both questions is no then I think this would be very beneficial. I would also suggest an open and honest conversation with your dh, make it clear that his current behaviour cannot continue! Let him know the devastating impact that his behaviour is having on you and your children! Tell him that you understand how hard it is for him, but that its hard for you too, you have gone through everything with him.

I would recommend contacting your local advocacy provider, most local authorities will have them. An advocate can support you to go through a carers assessment and in liasing with the adult care department of your local social services. Let them know that you are close to leaving, that you need support. Or that you are leaving so they need to provide care for your dh.

How much of his behaviour is voluntary (out of understandable frustration) and how much is his condition?

I can't help think how people would respond if a man posted this - they would be torn to shreds here.

It's not something any of you brought on yourselves (presumably), so perhaps treat it like a marital dispute - what do you each, and the DCs, need, and what are the options open to you all. It may be you can find some middle-ground.

I find the use of the word abusive really interesting, I always had abuse as down as being directed eg swearing at me not just in the general area/same room as me. Maybe that is why I have struggled to tell him how much this bothers me
Certainly food for thought thank you Rescue Puppy for sharing your experience. We have both a different points over the time had counselling but maybe things have changed and it is worth revisiting.

I certainly feel that as my thoughts are coming together better, thanks for your comments, I need to talk to him.

His behaviour is entirely voluntary, he could choose not to swear at his shoes and throws then across the room. Or attack the worktop with a knife because the onion rolled away. His cognitive impact mainly affects memory not impulse control.

And no, entirely not self imposed not related to lifestyle choices

Is there a brain injury group you could get support rom..or he could get help. It sound like he is suffering the after effects of a brain injury?? Has he medication for moods ?
At the end of the day you can only do what you are able for. Your dc need a happy dm and you deserve peace.

Has your dh had much involvement with occupational therapy? It sounds like he is incredibly frustrated with his new helplessness. There are so many tools that occupational therapy could give him to help him regain his independence. I know how difficult it can be to accept that you need to rely on the support of others when you are used to being independent. It feels dehumanising, your pride takes a serious hit and it is so easy to slip into a very dark place. Your dh may well be suffering from PTSD, related to his brain injury and the trauma following. That would certainly explain the mood swings and aggressive outbursts. It doesn't excuse it though! You need to have a very honest conversation with your husband, he needs to know that his outbursts are terrifying for you and your children. I think that its definitely a good idea for your dh to seek help, he needs support from a mental health professional. I would look also for any charities that support people with brain injuries and their families. This charity looks informative

www.headway.org.uk/supporting-you/someone-i-know-has-a-brain-injury/

Try to find out if there are any local support groups, either a carers support group, a families of people with brain injuries support group, or a support group for those affected by brain injuries. It can be so helpful to talk to someone who has walked the same road that you are travelling on.

Being a carer can be incredibly isolating, especially when you are trying to do everything on your own. My poor husband spent a full year as sole carer to me and our autistic son (who was 4) and our then toddler daughter (who was 2). He was almost at the point of having a nervous breakdown, when I called home start the charity and begged them to support my husband. They were amazing and within a week we had a volunteer coming in to help give my dh a break, they had referred us to the adult care department of our local social work team who came out the next day and had carers coming in to support me and our children the day after. We fell through the gaps of the system, we had no idea that we were entitled to care for me (which the council funded), or that we were entitled to an advocate, or even what benefits we were entitled to. We had tried applying for child tax credits, income support, housing benefit etc but had been rejected. Then when home start and our local advocacy team became involved, they helped us fill in the forms and we finally were able to afford to feed our children (as apposed to begging our families for money for food).

It was shocking to all the agencies involved that we had slipped through the cracks, they really went out of their way to support us. I remember fearing that admitting that we needed help would mean that social services would take our children from us. I couldn't have been more wrong, the adult care team were only interested in supporting me and my husband and in helping me with personal care and also in my role as a Mother. (Disclaimer that I am more than aware that this is not the experience of everyone working with social services. We have since had good social workers, OK social workers and bloody awful social workers. The light that has guided us throughout it all, has been the advocacy service. Its wrong, but when you have an advocate representing you, social workers seem to be much more efficient and supportive).

You need support, if you alone are dealing with your dh's personal care, it is no wonder that you are no longer attracted to him. I have female carers who come in to support me and it has made a big difference to the dynamic of our marriage. During that year where my husband alone was caring for me, we became more like carer and cared for than husband and wife. I carried so much guilt for the changes to our lives and my dh was being eaten alive with guilt at his building resentment of me. Now that I have carers in every day, we have returned to being husband and wife. Through counselling we found an outlet to my guilt and enormous emotions surrounding my health and decline, and my dh's guilt and resentment. It took three lots of counselling for my dh, and thankfully we are now much happier and content in our new way of living after the blow that life has dealt us. We have rough days but counselling has given us the tools to deal with them.

There is some good information about advocacy services on this link

www.nhs.uk/Conditions/social-care-and-support-guide/Pages/advocacy-services.aspx

Thank you so much for your time to share your and your family's story Rescue Puppy. I am really very grateful. And yes brain injury for those who rightly guessed. I am trying to be a bit vague for obvious reasons.

He had a brilliant OT for the initial 3 months but the one he sees now he has no relationship/ trust with so he avoids. Our experience with her is not positive. Unlike the physios who have been amazing.

I will read the links and start to pull together a plan. My thoughts are that the kids go away for a few nights soon so that might be a good time to have proper full chat about life the world and everything, and to take the point of the first response I received, tell him how unhappy I am. But talk to him about what groups/support I have found so that it is a "this is the problem and here are some solutions that you have to engage in" type of approach. What do you think? I want to steer away from blame (I am no angel, can be grumpy, usual stuff) but make it clear it is serious and change has to come.

Thanks again.

TRIGGER WARNING THEMES OF SUICIDE
I think that is a positive way forward for you both. It is a good idea to have positive pathways that he can choose to take. Please be aware that he may lash out at you, or voice some very dark thoughts that you may not have expected. I know of men who in a similar situation have felt so guilty and disappointed in themselves that they couldn't provide financially for their families. They felt that they would be better off dead, as at least then their life insurance policies would pay out. Now obviously their wives/ families completely disagreed with this! If your dh is having suicidal thoughts then I would recommend that you contact his g.p. Anti depressants may help to part the dark clouds, at least until a referral can come through for counselling.
A neuropsychologist may be able to help but that would obviously be your husbands g.p's decision to make.

I'm sorry that your dh's current OT is so useless, a good OT is worth their wait in gold! However there are websites where you can buy aids to help with say putting on shoes, or socks. It might be worthwhile making a list of the things that your dh struggles with, then look online for aids that might help. You could then present your ot with the list and the aids that you have found online that may help. Depending on funding you may need to purchase some yourself.

Worth their weight 😲😨 , I came back as remembered that I forgot to link to the disability aids websites

www.betterlifehealthcare.com/browse/household/

www.essentialaids.com/dressing/shoes-laces.html