Carers Guilt

[katiecork]

I don’t know if I should share my feelings with strangers but I am feeling anger and frustration and hope I’m not alone. My partner suffered life changing injuries because of his own negligence and fault. The result is that for the past 5 years I have been a fulltime carer for my partner with limited help from family. And I don’t think I can do it anymore.
My life is dictated by his ongoing appointments/meetings/activities. He can no longer drive and needs assistance with everything. He puts on a good front for everyone he meets- friends, healthcare workers, therapists but at home he’s different- at night he gets very agitated and roars intermittently when sleeping.
This has had a devastating impact on his life and he has had numerous counselling sessions with several specialists but no amount of counselling is going to change the fact that his injuries are permanent. He’s a young man- early 40s. The reality is that he could live for the next 30 years as otherwise he is fit and healthy.
Im hoping someone can share if they have been through something similar.

You don’t have to stay. You have a life to live too.

Get in touch with a local carers charity, Carers Trust can help. You are entitled by law to a Carers Needs Assessment which the local authority must take note of if you are in the UK

Sounds unbearable. I think you need to be honest with friends and family and tell them that the incident was HIS fault and caring for him has broken you. Explain that you are unable to continue like this, and they are going to have organise and help him come to terms with having outside care.

How horrible.

It’s very possible to have carers’ burnout, and it sounds like you’re experiencing that?

Agree with PPs about an assessment. What would he need if you went back to work for example? Would family step up if you asked them directly for specific things?

Or do you think the relationship is no longer tenable for you? I understand how you immediately go along with things when someone is unwell. It takes years to understand what are temporary feelings of adaptation and whether there’s permanent resentment. You don’t have to stay if you don’t want to.

For me it’s been struggles with DH mental health but I completely get how your coupledom changes. My DH really wanted me in that ‘mother’ role it felt and it killed intimacy… it’s all so difficult and no judgement from me 💐.

And this is why caring for people is so fucking hard as there is no escape lest there be judgement upon you.

It sounds like he did something stupid, it backfired, so op has to now dedicate her life for the next 30 years. Often when something happens that changes a relationship like this men rarely stick around, whereas women do (yes there will be exceptions)

I agree with pp re a carers assessment, also I suggest some counselling for you. Things happen in a marriage, if you choose to leave you will always be painted as the bad guy by some people.

has the incident left him just physically disabled or are there brain implications too. Reading between the lines It sounds like behind closed doors he’s taking all his frustrations etc out on you. That is not ok, definitely if he has the capacity to control it.

Oh OP, that sounds tough for you.

Agree with pp. If you don't work outside the home, start to plan to do so. You don't have to be the only one caring for him. It gives you a life of your own and is a good halfway step to independence.

If you do decide to stay with him, can I recommend a book called 'The selfish pig's guide to caring'? I found it helpful when adjusting to being a carer for my parents - written by a carer it's about getting a balance of caring for yourself, as well as your loved one.

Sending best wishes . . .

What's horrible is judging someone in such an awful situation. This man isn't her child, her parent or even her husband. As a full time carer myself, I know how utterly relentless and would destroying it is. If I was him, I would be encouraging you to go and live your life. It will be hard to go but you only have one life.

I was in an accident and ended up seriously physically disabled.

this isn’t about his disability. This is about his personality and coping mechanisms.

when I’m too ill to drive I get wheelchair taxis or the train and book assistance. I bloody well do as much as I I can to retain my ability to do stuff for as long as I can.

the one thing I do agree with is counselling doesn’t help.

you do not have to be his carer. You do not have to facilitate his entire life for him.

if he genuinely is so physically disabled he needs someone with him all the time (which is a very high level of need, and is NOT the same as wanting someone to be with him all the time to comfort him) then you need to look at getting someone in or moving him to a care home.

is he getting PIP and other support? Does he have a wheelchair? Is a motabiloty car a possibility?

you don’t have to stay with him just because he is disabled.

I divorced my partner nearly ten years after my accident largely because although he thought he should stay with me he couldn’t cope with not having a trophy wife anymore and took it out on our family.

I live on my own. With three wheelchairs and I manage very well.

Thank you all- I’m struggling to come to terms with the enormity of the responsibility of being my partners primary carer. His very high dependency requires 24/7 care. If 5 years ago I had realised the level of responsibility needed, I don’t think I would have accepted this. But I did, and there is no going back. He does have carers who provide personal care and I have a part time job in the mornings without which I wouldn’t be able to survive.

But I deeply resent the expectation that because he is at home, that I must give up my life. I knew that there would be sacrifices when he had his accident but I honestly didn’t realise the enormity or impact this would have on our family. There was an expectation at the start that he would come home from hospital and that expectation continues- the comment “How horrible” from a pp is exactly the reaction I expect from others.
I don’t know how or if I can change this. Or if I could live with the guilt if I do.

This is why you need some counselling yourself, to help you come to terms with what you have sacrificed so far and what your future would look like.

Are you prepared to continue to sacrifice because of the expectation, or because you love him and want to be with him.

what would be the consequence if you couldn’t continue to care for him? Would he have to go into care? Do you have children? What is the impact on them?

Is he nice to you, does he give you reason other than obligation to stay in the marriage.

how often do you get respite and chance to get out of the house to do things for you.

https://www.carersuk.org
this website came up on a google search and might be able to help

I really feel for you. If your husband had this happen, but let's say youd decided a few years in that you were no longer compatible, would anyone say "how horrible" to the suggestion there was a door marked exit?
Does tragedy and dependence take away the choice aspect of being in a relationship?

I live in rural Ireland and behind closed doors the place is littered with lost and ruined lives of adult siblings who were emotionally blackmailed into taking care of, in this case, usually infirm parents. It's something Irish people never seem to acknowledge.

If you want to stay then stay, but in any case its high time a path forward was made. If you do stay and 30 years go by, with more and more dependence and abuse, nobody and I mean nobody will tell you "look, you've done enough, you should stop". They will sit and judge and watch the life ebb out of you.