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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

I don't want to be a carer

80 replies

Annonembarassed · 26/08/2024 18:27

Younger sibling has extreme physical and mental disabilities. Lives in supported living but with health deterioration this looks unlikely to be available long term.
Other option is care home.
Other sibling has said this won't happen and she will give up her job to care.
Implied I will be expected to help 50%.
I don't want to be a carer.
I think there are other options to explore.
She says I am selfish but she is making the decision regardless of my views.

OP posts:
KreedKafer · 26/08/2024 19:42

If your sibling has really profound mental and physical problems and needs the care that entails, then their needs will almost certainly be much better met by professional carers in a care home environment than by you and/or your sister muddling through. It’s not something anyone can just pick up and do 24/7 and the person being cared for often suffers as a result.

GettingStuffed · 26/08/2024 19:42

Caring for relatives is very hard, both physically and mentally. It's also all consuming and it can make you resent the person who needs care.

Some places do have a caring community so you can go out for coffee with your caree.

I'd recommend the home and then you can visit them and take them out without the mental stress.

If your relative really wants to do the caring the you can get a carer to come in . We paid £15 and hour for my MiL's carer.

SillyOlivePanda · 26/08/2024 19:45

I’ve 3 children. My youngest DD is 9 and will require lifelong care for cognitive and physical disabilities. No bones about it my life is hard work, relentless and home can feel like a prison. As a mother I would never in a million years expect my other two children to take over their sisters care when I can no longer look after her. We will make sure there is something suitable in place for when they are young adults. I would hope that my other DC will oversee DD’s care but only to the extent of making sure she is well looked after by others and her needs are met appropriately, I would not expect them to do the caring . As a mother to a child like your sibling I would say don’t do it.

godmum56 · 26/08/2024 19:54

its your sib's decision to make about her time and resources and no one else's. If sibling has said "that won't happen" then alternative is up to her.

Original poster
Annonembarassed · 26/08/2024 20:00

Thank you all for making me feel less selfish and looking at it from a practical point.
He is non verbal, immobile, struggles with food, incontinent and stubborn so fights against you.
None of our houses are suitable and don't have a lot if space for adaptions and equipment. Financially, physically and emotionally it is not doable and is not something I want to do. There's an unknown end date and it impacts on so many other people.
I thought people would see me as selfish and think badly of me but you all have valid advice and can see the bigger picture.. Thank you

OP posts:
autienotnaughty · 26/08/2024 20:02

I'd say no but perhaps off to do a weekend a month as respite if she chooses to take him on. Otherwise I'd plan for a care home

Plantbasting · 26/08/2024 20:07

Oh OP. I’m sorry.

It’s a fact that not everyone is cut out to be a carer. I include myself!

And this isn’t like caring for elderly parents where it could be for just a few years - this could be a massive chunk of your life.

Set out your position now and stick to it. There’s no need to ruin your life over this as well.

steadywinner · 26/08/2024 20:09

Agree with everyone else - you do not have to agree to this and you need to make it crystal clear to your sibling that they can make the choice for themselves but not make it for you.

MrsToothyBitch · 26/08/2024 20:10

You are absolutely NOT selfish. It's very hard work. Your sister sounds naive.

cadburyegg · 26/08/2024 20:11

My aunt and uncle have 3 adult children. Their youngest has significant disabilities. My aunt and uncle looked after him as best they could for a very long time but he is now in a care home. It was never considered that his other siblings would care for him and give up their own lives. YANBU

Stirmish · 26/08/2024 20:13

Oh OP don't get bullied into being a carer

It's definitely not for everyone and a thankless task

You have a life so go and live it the way you want

Families always argue about this sort of thing so make your feelings clear and leave it at that

A care home is the best place for him and you can both visit him there

Is her concern a financial one ?

Uricon2 · 26/08/2024 20:15

I'm a 24/7 carer for my husband and have been for years, big deterioration in the last 2. I do it because it is my choice. It doesn't have to be your choice, certainly not a forced obligation and I think that you should make it very, very clear that you aren't going to do it and offer to help finding the best alternative possible that will meet your siblings needs.

user1471538275 · 26/08/2024 20:15

You need to tell your sibling now and be very clear that they can be a carer if they want but you will not be.

That will allow them to make a realistic decision. She can call you selfish all she wants but she is being enormously selfish to try and make the decision for you.

Stirmish · 26/08/2024 20:15

OP you are definitely not being selfish

Runnerinthenight · 26/08/2024 20:18

HaveSomeIntrospect · 26/08/2024 18:54

My mum was putting pressure on me to take over full time care of my sibling. At the time I had a toddler and a career, my sibling required full time care for their mental and physical disabilities. She would not accept that I would not and could not do it, having been raised always being second to my sibling’s needs, I did not want that for my child. I told her to put him in a care home while it was still her decision to make. Unfortunately, her health took a serious turn for the worse and he had to go into a home.
my mum and I no longer speak, and my sibling is in a lovely home where he is visited regularly.

I'm sorry your mother took that line - it was really unfair of her. It's a huge imposition to expect anyone to take that on. Fair play to you for standing your ground x

Modestee · 26/08/2024 20:20

I have posted before with a different username about my sister.
She was cared for by my parents until she became extremely difficult/aggressive.Social Workers of Health visitor saw the damage to parents health and arranged respite care. Sister never came home, she enjoyed the place more. Days out in minibus, stayed up late watching horror movies. Calmed down much better.
She had the benefit of trained carers not amateurs.
She was among her peers, no longer the dumbest person in the room.

craigth162 · 26/08/2024 20:21

My younger son will likely need care...in no way would I ever expect or want my older son to take this on. I hope he will always be there to support his brother as a sibling but not a carer.

reesewithoutaspoon · 26/08/2024 20:25

No. Caring for a profoundly disabled adult is difficult enough even if you choose to do it.
Its absolutely not something you take on if you are not 100% committed.
I was a nurse for 37 years. I would not willingly be a carer for anyone else other than one of my own children.And even then if it involved lifting I would choose a care home rather than damage my back and disable myself.

WearyAuldWumman · 26/08/2024 20:25

Annonembarassed · 26/08/2024 20:00

Thank you all for making me feel less selfish and looking at it from a practical point.
He is non verbal, immobile, struggles with food, incontinent and stubborn so fights against you.
None of our houses are suitable and don't have a lot if space for adaptions and equipment. Financially, physically and emotionally it is not doable and is not something I want to do. There's an unknown end date and it impacts on so many other people.
I thought people would see me as selfish and think badly of me but you all have valid advice and can see the bigger picture.. Thank you

Thank you for this information.

it cannot be done. It simply cannot. Your disabled sibling will be better off in care.

WearyAuldWumman · 26/08/2024 20:29

reesewithoutaspoon · 26/08/2024 20:25

No. Caring for a profoundly disabled adult is difficult enough even if you choose to do it.
Its absolutely not something you take on if you are not 100% committed.
I was a nurse for 37 years. I would not willingly be a carer for anyone else other than one of my own children.And even then if it involved lifting I would choose a care home rather than damage my back and disable myself.

That's a good point.

I was willingly my husband's carer. He had a stroke and had hemiparesis. He learned to walk again, but needed a lot of help.

Latterly, he needed help getting up out of chairs and so on. Two years after he died, I needed a shoulder decompression to deal with a problem I was left with as a result of moving and handling.

A friend who lives down the street was her husband's carer. He had MS and gradually became immobile. She had to have a spinal operation two years ago.

Oldfatandfrumpy · 26/08/2024 20:42

She says I am selfish but she is making the decision regardless of my views.

I would be exceptionally clear with her that she can of course disregard your views, but you won't be bullied into being a carer when you are neither capable or willing, so she should make sure she factors that you won't be participating into her decision making

LikeWeUsedToBe · 26/08/2024 20:46

I have a disabled child. It's soul destroying work there is no support or respite, no respect or acknowledgment. Constantly fucking poor. I would never ever expect another child to take on this responsibility, I would actually discourage it they already lost their childhood to mum being busy caring and no money. Once adults that's their freedom from this hell I couldn't let them give that up to take over from me when I'm unable.

Also two people can't claim carers allowance for one person. It's like £80 a week and you only get it if you earn less than £150 a week. So what is your sister planning? Give up work to care and then give you half the allowance for your input and live off £40 a week? Does she know the reality of finances for disabled people and their carers? So many people think it's loads of money and an easy job. It's the complete opposite and society hates you for the burdensome lazy fuck you are perceived to be if tou get dealt this life.

If your sis wants to do it good for her. You need to be VERY clear what you would be prepared to do and if that's nothing then be very clear. I think you are only ever obligated to care for your child, parents responsibility not siblings or daughters or step mum. Parents get no choice everyone else must get a choice or it will just break you quicker- once you take care responsibility on you will never get SS to take responsibility back there just isn't enough to go around you need SS to decide supported living not enough and sort what is needed if you take sibling out of supporting housing even just short term while SS sort something then your sibling is in a safe suitable living situation and not a priority. Only do it if you can commit for life

LikeWeUsedToBe · 26/08/2024 20:48

@reesewithoutaspoon
@WearyAuldWumman

There is research that shows men with a wide live longer than single men and women with a husband live shorter than single women. And it's because of stuff like this

LeontineFrance · 26/08/2024 20:51

It depends on the type of carer role. If it is a spouse or child and they are terminally ill, taking months out to see them to the end is a right of passage. However, if it is for a sibling of a similar age, you will be signed up for life. You have your life to live and being a carer puts all you personal relationships and future at risk. For me, I would visit every so many weeks or take them out for an ice cream or visit somewhere to do your bit. We are not all built to be carers and there is a lot of support out there now which is available.

Echobelly · 26/08/2024 20:52

YANBU - it cannot be automatically expected of you that you be a carer for a sibling.