When your spouse is no longer the same person due to illness. Support thread?

[Casttosea]

How do you navigate that?

Is anyone else in a similar situation? I'm looking for some support/advice I guess. And would love this thread to be a support for others too.

We have been together 7 years and have 2 children under 6. 2 years ago DH had an accident that has left him with nerve damage and subsequent chronic pain. 1 month after the accident we had our wedding.

These past 2 years have been very difficult and has resulted in me taking 3 periods of 4+ weeks sickness from work due to anxiety.

DH lost his job just before Christmas as a result of the accident. I work part time only. We are now on UC and he is on ESA. We are waiting for the results of his PIP assessment.

We had a nice life with goals and ambition and this has now been taken away.

DH is on a cocktail of (horrible) medication and is seeing a clinical psychologist who specialises in pain and also a physiotherapist. He's been told it's life long.

The accident has meant he cannot physically do the things he used to be able to including hobbies so he has become reclusive and doesn't see his friends any longer. He was very sporty and competitive and this has ripped that all away. As you can probably imagine this has affected his mental health in a big way. He is now depressed and has anxiety. He's also drinking way too much. I exploded recently and told him he had to stop drinking as much otherwise I would have to leave.

It has affected our relationship greatly. We have fought more than ever through frustration on both sides. He doesn't always communicate with me very well until we're at boiling point. Our sex life was great and now is practically non existent. We are still a team though.

I could write so much more about it but that's enough for now.

It's just so hard. I'm trying to take it one day at a time and have seeked help for my anxiety so I am in a better place mentally but it's difficult when he is still in such a bad place. He has good and bad days. The past 2 days have been bad for some reason. He's gone back to bed this morning.

Family and friends are always asking if he's got a job yet, I don't think they realise how bad it is as he "looks" fine. He had worked in the same industry for 20+ years and he cant do that anymore. He doesn't know what else he can do due to his limitations now but also he mentally is not well enough to work.

Is there anyone in a similar situation with a spouse who has been affected by illness and how it impacts on you and your family? How do you cope?

Thanks for reading.

That sounds so hard. It seems like your DH needs a lot of help and support to adjust to his new situation. It is incredibly hard for a person to come to terms with things being different to how they wanted them/expected them to be, but it is possible -he needs to see that while life won't be what he envisioned, it doesn't have to be terrible, it can be good in a different way. Hard to imagine that now I know but it is totally possible. Would it be worth finding a support group/someone to talk to who is in a similar position? For yourself if not for your husband.

Why are your family and friends so unaware of what's going on?

Friends and family know the extent of it but I dont think it fully computed with them or they think that it's been 4 months now since his work finished and it's now time for him to get a job. They dont live with it so I can understand why they cant grasp the severity of it. He physically looks fine and puts on a front when he sees them and appears his "usual" self.

I think me getting some support from those in similar situations would be helpful. I feel quite alone. My friends don't even ask about him or how I am or anything really. Maybe I am too good at appearing that everything is okay. I don't want sympathy but just maybe acknowledgement and some understanding.

Maybe you have to be clearer with them about how hard you're finding it? Sometimes you really have to ask, loudly, for what you need. Unfortunately lots of people will let you down, in which case you need to look elsewhere. There is support out there, it just takes effort to find it unfortunately.

Your lives have been permanently changed. You both need help to settle everything back down into a new pattern you're happy with.

My current situation isn't (fingers crossed) long term as in multiple years or lifelong, however he has another 6 months worth of horrid treatment left and hopefully it'll be clear.

He fell ill around 4 months ago. He's had multiple weeks in hospital, and some of that in isolation. The cocktail of medication he's on is tough. He has 17 pills a day, and he's appearing to suffer from every side effect of every tablet. He's having weekly kidney liver and eye tests to ensure the medication doesn't affect these.

He's having good days, bad days and horrific days. He's having horrendous muscle aches, awful sweats to the point of becoming agoraphobic because of the paranoia of never knowing when a sweat will come on.

Because its been months since he's felt ok, his temper is short, his overall mood is down, weight is piling on because he's not well enough to do anything and as a side effect of the medication which is getting him even more down. He's suffering from alternating periods of insomnia and needing 12 hours sleep to even get out of bed.

Work is difficult for him. His boss is a wanker. He's exhausted his paid sick leave (not in the UK so different rights) so any day off is unpaid. They are also cutting staff so I feel its only a matter of time before he's laid off.

I'm struggling with it. He's unpleasant the majority of the time. I feel I can't complain even about daily shite at work because of how down he is. I'm laid up with injury and of course the agony I'm in has only been going on for 2 days - his has been months.

I'm obviously doing everything - dog walking 3 times a day, food shopping, cooking, at different points visiting in hospital and running to appointments when he's been too weak to drive. All with a full time, 60 hour a week job that I can't afford to be underperforming at given the uncertainty of his job.

Casttosea Your second post - I could have written it. Everyone knows he's ill. But people don't see how sick he is, or how down he is, and he's not seeing or speaking to people enough for them to see the change in his mood. Not once has anyone asked if I'm ok or how I'm feeling.

How I'm feeling is exhausted, worried about him, disturbed sleep, normal every day work stress, and the stress of not having any help with every day life. As you say, just SOMEONE to acknowledge that this is fucking hard. One woman who I thought was a very close friend knows what he's been going through (my DH and her DH are very close and whatsapp chat daily). I've not spoken to her since new years day. She doesn't return calls and at no point, even when she's known he was in hospital, has she messaged me first or asked if I'm ok.

TheDailyCarbuncle I concur with Cast - even if people are told they don't live with it daily so they only see what DH wants them to see.

I also feel guilty for feeling very 'me me me' at times. But the weight of the stress, worry, and lack of support is getting to me. I also feel like I can't talk to him about how I'm feeling, which is awful as for the last 15 years he's been the one I've spoken to about everything - I just don't want to stress him even more and add to his worries that its affecting me too.

@MardAsSnails That sounds so difficult for you. It is the sudden change that is hard to get used to. If these issues had always been there then I'd have been better prepared but to have the rug pulled from under you with no warning is hard to bear.

Needless to say, it has been horrendous for my DH and yours. This thread, however, is a way for me to be selfish about my feelings and the difficulties I am facing trying to deal with it.

I totally get you about being unable to talk to him about it. He also was the one I always turned to, he was the calm and laid back one who always wants to solve everyone else's problems. He feels guilty now if i tell him how hard it is for me and that makes his overall mood worse and the anxiety increases.

A while ago the tension was really bad and we became quite isolated from one another however after a big row things have improved and I do feel a bit closer to him again. I have realised though that I have to make more of an effort in this regard in order to get the intimacy back that we used to have and not just relating to sex but the closeness we one had.

What you do MardAsSnails daily/weekly sounds exhausting. I hope you are trying to do things for you that makes you feel good. It's very easy to let that slip and before you know it you're in a bad place yourself.

My husband had a brain injury 2 years ago and remains in a minimally conscious state. Although my situation is a bit different I know how you feel we have lost the person and life we had and also the future we thought we had. I coped ok with all the stress of hospitals, setbacks, 15 months of an 80 mile round trip to see him, and numerous other issues, but how our lives have changed forever has been the most difficult. I just try now to not think too much about what has happened and also the future. Just try to cope with each day and be positive and hope that things will improve in time.

I know how you feel. It’s hard for me to put into words how difficult my life is sometimes but i try very hard to be positive.

@halfacup I'm very sorry to hear what you're going through I know 2hat you mean about your future changing, it's difficult not to dwell on that. I too try to look at the positives. It's taken me a long time to get out of the depths of despair. It took a lot of work and soul searching to get there. I'm a work in progress though, a long way to go.

@Bowchicawowow Do you want to talk about it? It is very hard trying to stay positive. For a long while it was one thing after the other and I kept getting knocked further and further down and could not get back up. I think it's a bit easier now because we finally have a prognosis (although not the one we hoped for) and DH is getting the professional help he needs now so that is positive.

My marriage went through a very difficult patch when my husband had chronic and debilitating pain that no-one could find a satisfactory reason behind. He ended up on extremely strong painkillers (liquid morphine) sleeping pills, antidepressants and basically became a shadow of the man I loved. Our sex life was non existent and he couldn’t work so I was working full time, getting up in the night with small kids and trying to keep on top of the house/shopping etc. It was a hellish two years, and I often wonder how we survived. But, he went to pain clinic, started talking therapy, began exercising and gradually came off the drugs (this was the hardest part of all) and now is working again and the man I love is back. He does still suffer from the pain, and some days are tougher than others - but I just wanted you to know that there are positive stories too.

Casttosea, I can totally empathise with you. Your story is very very close to mine, only DH accident was in 1995. At the time we were told it would take 18 months to 2 years to get back to normal. I remember thinking that that was ages. However, he has never got back to normal. In fact he’s worse and gets worse as time goes on. He has constant chronic pain and along with that; depression.
We have 2 girls now. 17 and 14 and at times (well most actually) I have felt like a 1 parent family. As they were born after his accident, they don’t know the person he was before. On the odd occasion that person shows himself, but very rarely.
His accident was the fault of a colleague who has gone from strength to strength since. I would be lying if I said I didn’t feel bitter.
Sometimes, and I feel guilty saying this, I feel I can’t bear him and can’t believe this is my life.
Was good to get that out. Thank you. Sorry you are going through the same xx

@PinkiOcelot Your post brought tears to my eyes I know what you mean about feeling bitter about the accident. My DH was not at fault either.

@Figuringitout Your DH's treatment sounds very similar to mine. He's in the process of trying to cut down his pain meds because of the awful side effects however this is then not disguising the pain which make everything worse.

I think this explains his spiralling mood lately. Trying to find that balance is difficult. The high dose of painkillers leaves him emotionally numb and withdrawn along with all sorts of weird and uncomfortable side effects. But reducing them brings back the pain and the associated moods surrounding this life long injury and all that entails.

It’s hard to say you feel tired when another person needs you to look after them because they are ill or disabled.

DH can look after himself in that respect luckily. It's the constant negativity and mood swings that's so difficult. I had a tough day at work today and can feel myself spiralling downwards again and that things are beginning to get out with my control again. I came home and again it's all about how difficult he is finding things and all about his problems.

It's very lonely. Have been quite tearful today. It's horrible how quickly the atmosphere changes and the negativity that appears again.

And just when you think you may be getting somewhere you're back to square one.

You’re so right Casttosea. It’s really difficult. Sometimes I think my DH is really selfish and doesn’t appreciate how this affects all of us and not just him.
I’ve been going through a really tough time myself for the past year or so and he doesn’t have any sympathy for me (I’m not expecting loads just a bit of understanding would be nice). I get annoyed because I think I’ve put up (for want of better words) with him for years, but when the shoe is on the other foot, he’s got no understanding.
I work full time and never get any me time.
It’s crap.
Sorry, that turned in to a woe is me post and I didn’t mean it to xx