Im not sure I can continue to care for my husband anymore and it's killing me & UPDATE

All about caring Young adult carers
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Im sorry if this is an absolute ramble im just trying to get as much of my thoughts out on paper.

Im 29, so is my husband. He has had long covid and associated conditions for two years but realistically, ive only been caring for him for the last 8 months as he has deteriorated. It has been the most hellish 8 months of my life and i am so stressed i am worried i’m going to end up with a serious health condition myself.

We met when we were 16 and have been sweethearts ever since. We had our whole lives ahead of us. We’d just moved to our dream location, bought a house and were doing so well in our careers. We have a beautiful dog who we adore. He was the perfect husband; funny, sweet, caring, loving.

Now he is practically bedbound. Some days he goes to the sofa. He has extreme light sensitivity, and so we have had the lights off and the windows boarded since early November. He cannot do anything for himself other than shower once a week, dress himself and eat and drink. Every other task is mine and mine alone.

I am his sole physical support, we moved too far away for anyone to visit. His mum and sister call and are good to him but there isn’t much more genuine support. We have few visitors because he doesn’t want a risk of reinfection. I mask up at work and take various other precautions to ensure i don’t get sick. As such i don’t mingle much with others or get involved in after work activities.

I started a new job in August and have made lots of friends. Its a very fun workplace, eberyone is in the 25-35 age bracket give or take and its just been the best bit of respite from it all. I feel like i really fit in and love the organisation and its mission and would like to develop my career within it. Recently, he has urged me to go do activities or social things to give me some space, and in trying to be king asks me about how they went, but then heavily resents me for going and doing it. I then feel guilty and ashamed, and he thinks i won’t have protected from infection, or that im too normal and dont need him. It feeds a vicious cycle so i have stopped telling him about things i do, but then he gets upset that i am keeping things from him.

Recently i went to my work christmas nihht out, which i didnt want to go to but he said i had to. I got very drunk, but had a very good time and since then all i can think is how carefree my life was for those few hours and how much i miss my old self. I have started feeling extreme jealousy at the simplest of things, like someone at work made their partner (also a colleague) a sandwich, and all i could think was my husband probably will never do that. People just don’t get how easy their life is or how hard mine is.

He is obviously actively suicidal - i have stopped him twice from doing harm. Every day he talks about suicide but refuses to engage with any mental health team or take medication. He feels burdensome, ashamed and guilt that he has ruined my life too but also says some hurtful things like calling me normal in a derogatory way, criticizes me for a lot of things or making mistakes, resents me for the above things as well as if i complain its too wet outside today to take the dog out for long or complaining im too tired from work etc etc. He can fly into a rage if i appear to not be listening (im usually just so tired and burnt out). When the suicidal talk starts he says its because without him i can have a life, go on to find someone else and have kids, be normal and do normal things.

He wants to move back to our hometown, but finally for once in my life i fit in somewhere. I have friends that invite me out, i won an award at work. Ive never felt valued anywhere and i finally feel at peace with my life choices, like i belong and its literally the only thing that brings me joy or positive feelings about myself. I have no friends back home and do not want to go but i know its the absolute best thing for him to have support and family.

I am so so so burnt out. Im so tired, numb and incapable of caring physically or emotionally anymore. Since the christmas party all i can think is ‘how can i do 40 more years of this and still not be 70’. I want kids. I spoke to a male colleague (aged 35) at the party who told me about how he is scared he wont settle down in time to start a family, and on monday a different colleague passed suddenly from a heart attack who was only 46 with a young daughter which was such a shock, and both things made me realise it wont happen for me if im stuck here in this. Of course intimacy is also a large factor, i want a husband who i can connect with, physcially and emotionally and i dont really feel like i have either anymore.

I feel so horrible, so cruel, so ashamed if i give up, because i absolutely love him to pieces but i just don’t know if i can do this forever.

Im sorry this was so long, i haven’t really explained it all but i had to get it down.

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Start by asking your GP to recommend a private counsellor you can talk things through with. I did this when I was really bogged down after my husband died suddenly. It really helped to have someone focus on me and my needs, not disabled son or disabled mum.

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Thank you. I am on the waiting list for counselling with action for me. I should be starting in the new year. Im hoping i can get some clarity on my thoughts then. I have just unravelled them all to my sister too, and the more i write them down the stronger i feel about them.

I used to be so terrified about him dying or leaving me, and im so ashamed to say i might actually find it relieving. I know im strong because ive been through this, and i actually have started fantasising about living alone or doing things alone for once which sounds so cruel and horrible and wrong but i cant help it.

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The first counsellor I saw was organised by a carers worker but it was 15 miles away. I wasn’t told it was for a maximum of 6 sessions! Even worse, he left, so that was that!
My GP then gave me details of someone private who lived in the same town as me, and was female. She was brilliant, and very supportive when mum was dying. After a carers assessment, Social Services paid.
You are being very tough on yourself, it’s a dreadful situation. Not what you were anticipating at all. My second son has severe learning difficulties, brain damaged at birth, although we didn’t know for years. We had worked so hard for years, waited a long time to start a family, so they had a great start in life, but then my future changed forever. I so wish I’d been offered support and counselling then.
Your husband needs support as well but sounds resistant to everything, so you can talk this through with your counsellor. I was always caring for others, it really helped having someone looking at me and my own needs.

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Hi @Hopefulorca24 and welcome to the Forum. No need to make apologies for a long post or for thinking you are rambling. It really does help to get things down on screen and off your chest.

My husband, Graham, suffered a stroke 3 years ago and our lives changed overnight. Had to close our small business and I became full-time carer. Since then he’s had a cascade of medical issues and has had two spells in hospital recently totally over three months. I now have to help him wash and dress,; undress, catheterise him and fit a ‘night bag’ and connect up his ventilator at night - then I can get to bed, with earplugs cos of the noise of the machine. It’s bl**dy hard, isn;t it? I do all the cooking and washing, but have resorted to getting a cleaner. We have no social life, friends we used to have don’t visit, and my only breaks come from walking our lovely dog. Similar to you, but I don’t go to work (OK I am a bit of an old fogey now at almost 64).

May I presume your GP has you registered as his Carer? That can sometimes open up additional resources and also they are then aware of issues if you were to fall ill.

Is husband claiming all the benefits to which he might be entitled? A benefits check might be useful. That way you might be able to pay for some help at home - if he would allow someone else in, of course) Benefits calculator | Carers UK

Intimacy can always be a difficult topic to discuss when you care for someone and every situation is different. It’s something to discuss when/ you get a Counsellor

You should not feel ‘cruel, horrible, or ashamed’ as you have done nothing wrong., You are showing your love for your husband every day and coping with his illness. Resentment is a perfectly natural feeling though. I feel resentful of Graham sometimes, as I don’t have a life outside caring for him either. He told me a few times ‘go and find yourself someone you can have a life with’, but there’s no way I could walk out on him, and while the idea of going of to have some ‘fun’ (I can just recall when we were last “intimate”!) has it’s attractions, I don’t want to do that either.

I don’t have any answers for you, but please do use the forum for support and advice as many of us know exactly where you are coming from. You’ll not find any of us judge others on here as we know what it’s like.

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@Hopefulorca24 Hello from me too. TBH I think many of us on here could relate to your post. I too fantasize what my life could be like when my 85 year old husband dies. I see this as a ‘safety valve’. Our own needs get sidelined and we are forced to put them first all the time. But someone on here told me that we cannot support anyone else unless we take care of OUR needs.

I agree with BB that counselling is a good safe way to talk through your feelings. Also do you have a local ‘Support for Carers’? If you do then it is well worth making contact. You may struggle to get to the actual meetings but they sometimes have a Befriending Service. Often the Befrienders have been carers themselves and can be a good form of support.

Also have a think about checking out ‘Roll Call’ . There are a few regular posters and we share the ups and downs of our day and yes, even humor creeps in sometimes. It has been a life saver for me at times. My husband is 23 years older than I and have been caring officially since Jan 2013. My ‘challenge’ right now is that I never know if he is really going downhill physically or just trying to stop me going out. I compromise to a degree by going out to see friends for short periods and staying local so I can get home if he needed me. He thinks
Wives should NOT go out with out husbands’. But for MY mental sanity I need to socialise.
You are being VERY hard on yourself. You do not have to care for him long term and it worries me that he wont accept outside help or support from the Mental Health Team. He is an adult. TBH if I had known my husband would still be alive now I am not sure I would have had him back home after the Acute on Chronic Brain Heamatoma back in 2013…your needs are ‘normal’ for your age. He is likely to become more and more bitter sadly unless he gets and accepts mental health support.

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Reading your post again, the idea of moving back to where you used to live, but you are simply NOT going to entertain the idea because it won’t change anything and will involve a ton of work that he can’t begin to help with!

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@Hopefulorca24……welcome to the forum. So much of what you’re going through and feeling resonates with me. I’m 55 and my husband of 27 years has been ill for many years. Lots of health issues which have got worse over the last couple of years, kidney failure, severe mobility issues, hernia which twisted his bowel, stroke, sepsis. He spent 7 months in hospital and at a physio centre end of last year to middle of this year when he came home. We had carers in 4 times a day, doubled up. He couldn’t/wouldn’t work with the physio team and just sat in his chair in adult nappies not attempting to try and improve. social services then moved him into a care home where he is now. He resents me as I told him I couldn’t live with him anymore and feel the home is the best place for him and is no longer speaking to me. To be honest it’s a relief to be on my own and I now feel that I have some sort of life for myself. Don’t be too hard on yourself, your feelings are perfectly normal and understandable. Please do not give in to pressure to move away, you need to think of yourself too. Aways here if you need to chat.

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Thank you to everyone that has replied. Ireslly appreciate it. There is so much more nuanced information that I haven’t added but I didn’t want the post too long.

I feel so trapped, because I know a good wife would stick by him throughout this and until very recently i did want to. People always tell me what an incredible job i must be doing and how hard it must be for me, but as they don’t visit i dont think they really see how hard it is.

I have desperately been trying to find ways to get him help or get better or find some kind of treatment plan for his condition but I think recently its all just taken such a toll on me I seemingly dont have the energy for it anymore.

I didn’t sign up for this life, im 29, i have a long life left and i dont know why its this life that i was given. There’s two non negotiable objects in this I think: children, and moving home. My job involves working with young people and the more of them i meet the more I’d like my own.

Im really looking forward to the counselling. My husband off and on throughout the last few months has suggested separating but I know he only does it to get a reaction from me and to upset me into doing something he wants i think. Only, the last week when he has said it i’ve not even batted an eyelid, like i hope he makes his own decision for us to split and to move home on his own. I think for now nothing will happen but his own deadline for selling the house was the New Year and the closer that date comes the less i’m open to moving. However, previously he has spoken about his two options are moving or suicide, and that suicide will be the option if i dont move.

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@Hopefulorca24….please don’t feel pressurised into moving, it’s so wrong of him to suggest suicide if you don’t move.

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@Hopefulorca24 It is emotional blackmail. If you think he REALLY is becoming a danger to himself then you need to write to his GP pointing this out. Please do NOT be bullied into making decisions that are wrong for you due to his threats.

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The marriage vows apply to both of you, you are doing all the work while he does nothing towards the relationship, and rejecting all help available. Talk this through with the counsellor. Maybe make a list in priority order for your first visit?

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People telling you what a fantastic job you are doing but offer no support are just using it as an excuse to do nothing to help.
If he won’t help himself, won’t accept help, then only you have a right to say where you go from here. Not family, not “friends”.
You are wife, not slave.

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I agree completely with @bowlingbun, you can only do so much to help someone. They have to want to help themselves as well otherwise it’s pointless.

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I think he thinks if we move back home, ill have more respite and be able to go out and do things. But it isnt really that simple. He is terrified of me doing anything, and bringing back illness. I have few friends there and i am now a completely different person to the one i was when we moved from there 4 years ago. I feel selfish but i just dont want to go back, we moved here for a reason, and i am a much nore empowered independent and confident person with a thriving career and friendships i never thought id have. I feel bad that im effectively choosing that over him, but moving back brings financial struggle, busier places, no job security(?), id have to start from scratch again while still caring for him. Realistically his family won’t do half the work, they will occasionally visit, or if he goes back on his own he will move in with parents which might be the nicest option.

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I have already called the gp and mentioned this to them back in June, however due to his diagnosis it then scuppered a lot of investigation around the actual illness because they just wanted to prescribe antidepressants.

He has said previously that he doesnt want gp input, background info is that he works in primary care and is intimately understanding of what happens and refuses mental health support, counselling or medication because as he sees it, if he wasn’t ill he wouldn’t be depressed. Which i udnerstand but it is complete torture living with someone who 90% of the time talks about how they want to kill themself and they would do it right now if id not taken all tools away from them. He has even begged me to help him do it which i got so angry about, im not losing him and then spending the rest of my life in physical prison as well for it.

He is so resistant to so much, i havent even told him im gettig help myself because he always says i dont need it and if it got to that point then he isnt burdening me anymore but people get counselling for a lot less.

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@Hopefulorca24 I think he is scared of you having counselling because the counsellor will probably make similar comments to what we have made here and help you come to terms with things and move on. My husband was always against me having counselling and said if I went ahead we had to in together as if I went to see a counsellor on my own I would ‘lie’. He did not accept my view or reality was JUST as valid as his and I had every right to state my opinion and be heard and believed.

Your husband does sound rather selfish and controlling. I realise he has had a lot of health issues but he needs to come to terms with it. I feel he is using you as a ‘verbal punchbag’. I hope you get a counselling session soon and can talk through your feelings in a non judgemental and supportive environment.

Honestly if you have a good job, great colleagues then stay with it please. Moving back means starting at the bottom probably and can you even be sure of getting a job you will enjoy as much?

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@Hopefulorca24…reading what you’ve put I think you realise moving wouldn’t change anything. He would still be terrified of you doing anything and you’d then be even more trapped.

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@Hopefulorca24
Hello and welcome
My circumstances are different to yours. My lovely late husband suffered strokes vascular dementia and other health issues. We met when I was 17 and was 22. Love at 1st sight on his part so he often said. We had the ups and downs of married life but we were soul mates truly. After his main stroke after having a few TIAs his personality started to alter. Not his fault and the vascular dementia started to set in.I cared for him until his consultant forbade it for his safeguarding and mine. Then went into a nursing home.
I had one year of retirement and at times I really resented that and had the usual guilt monster on my shoulder.
I understand your resentment because you obviously thought you had many years of happiness to come. I hope some counselling will help you to decide what is best for you too. No right or wrong in these situations. Your life and needs count too very much

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Yesterday we ended up having a big talk about everything. A lot was said, some of it really painful. Im fairly certain I broke his heart.

He actually initiated the whole thing based on the fact he caught my cold and was depressed about catching another virus. The whole conversation was ao traumatic I can’t really remember the detail of what we spoke about, just the gist and feelings.

He was horrified i paused when he asked if id leave. The thing is, im at literal breaking point. Im one more petty comment or bad thing happening away from taking my passport and a bag and just leaving and not telling anyone where ive gone. I told him this. I told him my job and work and the people there are the one happy thing in my life and he hated that i didnt include him in that happiness. He told me he could never blame me for my decision either way then got so upset when i paused because he couldn’t believe id actually consider it. To walk out on him after 13 years and leave him to rot, completely unable to do anything for himself and just leave him to die.

We also talked about moving back home and i said i just couldnt. He tried to argue every way in saying it would be better at home and me not wanting to do it wasnt caring for him. We spoke about how if hed not got covid again 8 weeks ago, or this cold, he might not be as ill as he is now abd wed have more quality time, be able to do more, but this isnt the case the infections made his disability worse. We spoke about if i am to keep my job and keep him here, then i have to compromise. I was so tired by this point that i just agreed to what he said. But what he wants from me feels really restrictive.

I get he is worried about infections because they directly make him worse, but now i have to get a fully fitted mask, wear it 100% of the time im in contact with someone or in public. I already have an air purifier at my desk at work, limit contact. Its now too risky for me to go out with friends, to their house for a catch up, out for a meal, to a pub, bar, to the cinema, concert. I can do outdoor activities as long as i socially distance, like sitting in someones garden, or going on a walk (but we live in north scotland so its slightly impractical right now) and if i want to go on holiday i must isolate for 1 week after returning (who is looking after him?). I get his point, and i want to do everything to protect him, but my life has now just gotten a hell of a lot smaller. I know his life is only 4 walls of our bedroom and really i shouldnt complain but im not sure i can actually do this. My only options are to see people through my masked hell at work, and to go on a walk with someone or when im in the supermarket.

He also agreed he 100% wants to support me and be a better husband, be less depressing and take care of me, but then immediately said he didnt have the capacity to be there right there right now as he was too ill, when i was speaking about how severely depressed i think i must be and how i need to go to the doctors for antidepressants. I had a genuine breakdown, panic attack, and just ceased to cope. He held me but also said it was so hard from everything else id said to him and how id chosen to keep him here and put work first that he was too distraught. He did support that i go to the doctors and was ok about the therapy. I didnt mention he needed the same, because its obvious he wont do that.

The one thing i managed to get him to compromise on from his end was to stop with the suicidal talk with me every single day of my life. Stop with the constant complaints of his illness. Because its the number one thing that wears me down. I live in constant worry of how ill he is and if he is going to kill himself and its not fair. We agreed if he truly is struggling in that moment that he needs to tell me because i am there for him.

He thinks i love him less now for sure, and that he is completely worthless as he cant even look after me. That there is no point as he isnt a husband. He just sobbed all evening and told me he couldnt believe ive done this to him, that ive considered deserting him when he needs me the most. We have made up today, cuddled and just been together as he is so ill but i feel like in the new year when i have to go back to work and all the protocol gets put in place its just going to come crashing down again. I just feel so lost and scared and helpless and no matter what i do ill break his heart, live a life of misery and possibly guilt if he does kill himself.