To think I am a carer even if dh doesn't think so?

[Stressedgiraffe]

Just had a visit from a carers nurse after a Dr referral for stress and help
Dh is recently disabled and has just been awarded esa and has applied for pip. Should be according to the nurse entitled to enhanced pip.

He has daily seizures and is often incontinent.i have to remind him to take medication, support him after seizures, clean up after him.

The nurse suggested joining the local carer's support network. Seeing if there is respite care available if needed and getting him a blue badge.

Dh has hit the roof stating I'm not caring for him. I do nothing to help him etc

I work ft. Do all the housework, cooking,cleaning laundry etc. I sort out all appointments for dcs. I'm financially responsible for everything.

So who's right dh or the nurse?
Yabu- dh - I'm not a carer
Yanbu- nurse- you are a carer

You make a very good point.

The ill and disabled are still very much seen as a problem, a burden, something to be "put up with" or "managed" rather than individual people with different needs. This all comes from the government cutting benefits and "encouraging" people back to work and the likes of the Hate banging on about the benefits bill etc to buy into their voter/readerships beliefs (fit healthy boomers who think anyone who is struggling just "needs to get a bloody job and work harder").

Some of that may be to do with age and gender.

My son is now in his early 30's and although majority self caring, living independently and doing very well, still needs help. But as that has been his life since birth he is a lot more accepting of it.

My mother is in her 70's and although she doesnt particularly like needing assistance, she fully accepts that this is her lot at the moment. She isnt pushing back.

My father on the other hand has said at different times that he shouldnt need help, he doesnt want to be a burden and "men shouldnt need their arses wiped". He is older than my mother. I really do believe that he thinks that if he fights back hard enough by doing the things he cant do, eventually he will "win" and he wont be physically limited anymore. But all he is actually doing is hurting himself and making it worse through his injuries.

I think that life events such as menstruation, pregnancy, birth, menopause etc can affect the vast majority of women in that they need help during some or all of those things. So if we need help for other health reasons, we are more open to accepting it. Whereas a man who has always been fit and independent is naturally going to find it harder, as indeed would a woman who has not had any of the issues I mentioned above. And the age thing of "not being a burden" while at the same time not wanting to "go into a home" is difficult to square too.

I didn’t miss anything. You said that it makes you cringe when people refers to themselves as a carer for their loved ones. Why is this? When @OneTC states that she is her mother’s carer it’s just the reality of the situation, it means she is exactly the person who has these additional responsibilities significantly affecting her own life. Nothing to be cringe about.
The terminology is there and it describes the situation perfectly. I don’t want a new word to recognise my role. I want practical help and support.
And yes, being a carer affects your identity therefore specific support is needed.

😅Okie dokie!

Oh and FYI, suggesting that someone is "triggered" when they disagree with you just makes you look, well, silly. I am neither ""triggered" nor indeed "defensive".

@StormingNorman

My relationship with my mum isn't subsumed by my role as her carer. To me carer is only a practical description. When my mum goes into hospital, because of her condition, she is allowed "a carer" to assist at meal times and they are less strict on visiting hours. I don't claim them but being her carer would allow me to claim benefits.

I absolutely 100% would not care for someone professionally, harsh but I don't like being around sick people and infirmity depresses the fuck out of me. I am caring for mum because of our familial relationship not in place of it

My DH has been in worsening health for years and for the last 18 months he's been bedbound. Whatever you call my role, it is 24/7 and involves providing a lot of physical, hands on care and endless hours spent dealing with the medical side, from dressings to med discussions, anyone doing this will know. I don't define my essential self as a carer (I don't actually define my essential self as a wife, either, although I love him very much) but effectively, that is what I am.

I have the concern that if there is not an official, easily understood "word" to describe giving care over and above that usual for a parent/spouse/son/daughter/etc it runs the risk of becoming " Well, that's just what family do" and support/benefits fading away even more from the present pitiful level. I'm sure a lot of government would welcome this.

My son has ASD, DH is officially his carer - in that he's had a carers assessment etc. though in actual fact we both provide care, obviously.

I find it hard to wrap my head round the fact we are now carers and not just parents - because as you say parents care for their child.

The point of using the term carer though is that you are providing more care than would be expected at that age - DS school attendance is about 50%, someone needs to be in the house with him, and be available to take him in late if needs be. Without melatonin he wasn't going to sleep until 1am - and I had to be with him until he fell asleep - and then would (and still does) wake once or more often in the night and I'd have to go in with him. He won't visit friends houses alone, one of us has to be with him. He's 11 - at 11 I could go to the park with friends without a parent, DS can't in case he gets overwhelmed and has a meltdown. He is also very hit and miss on crossing roads safely. He can't bathe or shower unless he's taken swimming - sometimes to a pool an hour away because the wave machine fulfils a sensory need. And there's appointments with various services and professionals.

Obviously we're working on building independence, but he's at least a year or two behind his peers.

And all this means we are under more pressure, and life is more difficult than if DS wasn't autistic - and that we are tired, being woken multiple times a night - and waking anyway even if DS doesn't wake, is incredibly wearing ohysically and mentally. The label 'carer' allows us to access whatever support is available - we've had small grants for leisure activities, for food shops, we have a card that allows an accompanying adult into various venues for free, we had a grant from the council for work on the garden to give DS a safer outside space to alleviate the pressure on DH.

Uricon2 I agree with this.
Just because you are related or love someone doesn't mean you are not a carer too.
It may be a loaded term, but is the phrase that gets used by authorities in determining you or your loved one's needs, and has implications for financial benefits too such as carer's allowance.

Being a familial carer should not be a 24/7 job.
We carers need respite, help and time off.
I am a carer of two adult close family members who live with me, and I have made it very clear to authorities that I will not be available for round the clock care. I work full time from home, I need my rest and sleep- I am providing a home and I will not compromise my own well being. My needs are important.

Local Red Cross are very helpful too mostly as a resource for information- they have befriender services and will have lists of day centres, clubs, coffee mornings, free transport. and run day centres.
Take all the help you can find, even if that means using the word "carer"

You are a carer. If someone else did what you did it would be very expensive

YES!!! You unquestionably are a carer! Husband is in denial. You need to spell it out to him. Regardless, get support for yourself. You don’t need his permission to get it!

If you work FT then no you are clearly not his carer? A carer would be with him FT

No, that isn’t how it works. Not all disabled people require care 24 hours a day.

I have a chronic illness and a genetic disorder- I am a wheelchair user and my DW is my carer, she also works full time (so doesn’t get carers allowance).

She makes me breakfast in bed, sorts out my clothes, gets my chair and stick ready for me, deals with continence stuff

then goes to work

comes home and makes dinner, brings it to me and physically feeds me if necessary that day, showers me, does my hair, deals with continence stuff, gets me ready for bed, gives me my medication and then is available for me to wake her in the night if necessary.

On top of that she orders and collects my medication, organises and attends medical and PIP appointments, does the lifting/carrying/maintenance of my wheelchair, is available on the phone all day and has arrangements with work for if there are emergencies and to say she can never work late/start early.

I actually can’t list all of the millions of things she does for me that I can’t do myself- she just does it all while also having to work!

Today she did the morning routine, left the house at 7, worked all day then rushed home for 5pm via collecting some emergency meds- made my dinner and brought it to me in bed and is now writing up her case notes which she couldn’t do at work because she has to be home to do my dinner and medication- after which she will help me shower, change the bed, help me get ready for bed etc.

Carers who work are run ragged - they work AND do everything else- that’s why they so frequently get ill and burnt out and need support for themselves

I worked in a care home, and those were the kind of things I had to do for the old people I worked with, so YES you are definitely a carer!!

You've married yourself an angel there. That's love that is ❤️

No sweetie, it means they do all that care work on top of working and don't get paid for it.

She absolutely is, she is one in a million. I’m incredibly lucky.

I know he's obviously struggling with his pride but why the fuck should that trump your mental health and wellbeing? I'd be tempted to stop cooking for him, cleaning, cleaning up after him or assisting him after his seizures and see how well he copes alone, seeing as he's so dismissive of your contribution to his life

What a stupid ignorant comment.

MY autistic DS has always hated the idea of being 'disabled' or having a 'carer'. I totally get it. We used to joke about milking it to get a fast pass at theme parks or free entry to places, but he has always felt uncomfortable. He is now 16 and doesn't want to apply for PIP - such a tricky time.....

My DF is now 90 and has back and leg problems so not as mobile as he once was - you could probably argue his 75 year old wife is his carer but I'm sure they would both hate that term.

It's about pride and self respect - versus the legal descriptions to ensure you all get the support you need. If you are doing all the housework and cleaning etc (did he help before?) then you could say that is why you are legally considered his carer? But I agree with PPs - maybe keep the discussions low key while he comes to terms with it - but do make sure you get all the support you can.

Good luck.

You are a carer.

But he might not be ready for that reality. So you'll bumble along doing exactly what you already do.

Accept all support. You'll need it. If you need to ask referrers to keep it quiet so be it.

Of course, you are a carer. That said, men are taught from a very early age that their worth is in what they produce, what they earn. Your husband's self-view has taken a HARD hit, going from "normal" life to life as an invalid, and he's in denial about how helpless he really is. Try very hard to let it slide off of you, don't internalize it. He's lashing out at his own helplessness more than at you. Any chance of getting him to work with a therapist? I can understand how he feels, but you should not have to live with it forever, either.

This is very difficult, but yes you are a carer .
If you’re working full time then you could be registered as his carer but not eligible for carers allowance.
Being registered as his carer means you can still be considered for many things that could benefit both you and your husband .

A lot of carers don't know they are carers, particularly if they are women, and therefore people believe they should just provide care with no support, help, compensation or thanks.

Take every bit of support offered or available and definitely join a carers association so you can keep up to date with your rights and what's available. You work full time so make sure you know what rights you have at work.

Carers UK is a good place to start.

I agree. I did all of the same things for my late DH, and I also worked f/t. Get all the help you're entitled to.

Financially you cannot work full-time and be classed as a carer. Who looks after him the forty hours you're out at work?

This is probably why he doesn't see you as his carer. Also to him, you're his wife.

You are doing a care role however - just not in the eyes of the Government.

You are a carer whether DH wants to admit to that or not.

You are both in a period of transition and are having to adjust to accommodate your new circumstances, this can’t be easy for either of you. The dynamics of your relationship are changing and you both need time to accept this. I would encourage you to get all the physical and financial help you are entitled to, being a carer for a loved one can become overwhelming and exhausting very easily.

I would also suggest getting your DH to see a counsellor or therapist. Losing your independence due to ill health is difficult to come to terms with, especially if it’s a situation that isn’t going to improve significantly or get worse over time. He will have feelings of frustration, anger, resentment, sadness and loss that if not addressed will potentially be directed at the person he needs the most, which is you. Accepting and being ok with his new way of living is not easy but I know from experience that not addressing this early on will likely lead to bigger issues down the road.

You are no doubt hurt and frustrated that he can’t see what you do for him but try not to take it personally, he is grieving the life he had. That’s not to say you should allow yourself to be an emotional punching bag but give yourselves some grace while you find your new normal. Take any and all help that is offered and please remember to take care of yourself too.