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

I juggle meetings and if he needs help I leave the meeting which can be difficult at times. If the dc are at home they'll come and get me if he has a seizures

@Stressedgiraffe without prying too much op- does dh have a specific health condition that there are charities or services for e.g acquired brain injury? I wonder if someone else supporting him to understand how his life has changed and the benefits to recognising your caring role would help. He might also need to consider the implications if you weren't caring for him I.e he would need formal carers!

As he’s only recently disabled he has a lot of adjusting to do before he accepts his new reality. Until he does that then unfortunately I don’t think you’ll get him to agree with you on this one.

I’m trying to understand how a sudden disability would feel. In amongst the fear, anger, bitterness, grief for my old life and daily frustrations would be a huge dose of denial.

It would take me a long time to accept my new normal. Perhaps your DH isn’t ready to accept that you are a carer yet?

I’m sure in his rational mind he knows that the personal care you provide is more a carers role than a wife’s role. But maybe his brain is trying to protect him by burying those situations.

Be patient x

I am just here to say that your husband is in denial and you are a carer, otherwise he would not be able to function

You are a carer and this is a major problem for many carers - the care receiver dislikes the labelling because as a society, we’ve pathologised bodily needs and vulnerability. I’m sorry you’re experiencing this, I’ve been there too. Definitely join a group - you won’t be the only one in this situation.

I think you’re right, @StormingNorman . The OP definitely needs a support network so the carer’s group might be an excellent resource.

I don’t personally like the term carer in familial relationships.

I understand that the time, hard work and emotional labour involved need recognition, but it makes me cringe when I hear people refer to themselves as Carers for a loved one. It sounds so impersonal, like hired help. Caring is what you do, not who you are.

There does need to be a word to recognize the role that people like OP have.
They are going far above and beyond what would be expected in the standard description of partner or wife.

@StormingNorman I agree. Mothers do not call themselves nannies.

But it is intrinsically understood that mothering includes the duties undertaken by a nanny.

Being a partner doesn't intrinsically include the responsibilities of a carer or nurse. So there needs to be a word to encompass these extra responsibilities that people like OP are undertaking.

I did see a mother on here refer to herself as the carer to her DC with SEN.

In my mind you are a parent who cares for your child in whatever way they need, you aren’t a carer per se although you provide care.

You're a carer but with a reluctant caree. It's tricky and it will take time for your husband to adapt and come to terms with being more dependent on you. I think you will find support networks especially with other folks in a similar situation helpful.
I completely agree with the way that society views carers being problematic. You're simply living your marriage vows and society wants to stick a label on it and reduce your commitment to a transaction.

I agree with this.

Because once you become a carer, and brand yourself as a carer, it essentially signals the end of the marriage as you know it. And even if the disability itself does that anyway, your role changes from partner to carer, and in the person with the disability’s case, the role changes from partner to dependent, and to the cared-for person that can feel incredibly infantilising.

That doesn’t mean I don’t agree that for benefits purposes etc you shouldn’t be classed as a carer, but I can see why he wouldn’t want to think of you as a carer as opposed to a wife.

He does need to acknowledge what you have to do for him though.

But parents are given careers allowance for children with SEN

YANBU. Husband understandably in denial, but don't let that stop you getting the support you need.

@StormingNorman sorry but you have a very poor grasp of the realities of life for unpaid carers, who are always caring for people in a familial relationship. Probably best not to comment when you don't know what you're talking about.

@Itradehorses I agree with stormingnorman and have a disabled husband.

I had a similar problem with my father.

Profoundly deaf, blind in one eye but he managed with implants and one good eye. Then he started losing his sight in the other eye and was forced to give up driving (yes he had been regularly tested and was deemed safe until then). Now has other issues.

It has taken about 4 years before he would accept that either I would have to be his driver and accompany him to places or he wouldnt be able to go anywhere at all, much less appointments. But my mum could still drive so she did it all even though it meant she missed certain things important to her to do it, as he wouldnt let me do it.

Then last year a health issue in her meant that she can no longer drive. So I am officially his carer. Although I think in his head he has it lined up that really I am doing it for mum. He is very very resistant to accepting limitations of any kind and has hurt himself badly doing things that he cant do but wont accept.

He seems to be finally accepting the situation, but it has taken a long time.

Sounds like your husband is still coming to terms with his new limitations and is refusing to accept that he is as restricted as he is. By accepting you are his carer that makes him needful of care which is something a previously independent and healthy person would struggle with. Is there counselling you can access through you GP (who sounds great by the way, better than many!) to help him? PTSD is a very strong likelihood and he would certainly benefit from help with that.

@NoisySnail is fine for you to decide whether or not you personally want to be recognised as a carer. It's not fine to deny the experience of all other carers in family relationships, or to say it's just the duty of a spouse, parent, sibling, whatever. It denies the experience of others to question if carers exist. I am a carer. I have a child with disabilities who requires additional support. We get carers allowance to help with it. Being a carer (as opposed to simply a parent) has impacted every facet of my life (marriage, work, relationships with other children), but I didn't choose it. I'm not having someone else like @StormingNorman tell me it's just parenting, suck it up, because that denies my experience (mainly bad but some good). And we need language that we agree on to be able to debate the issues that carers face, that others without those responsibilities do not.

The reality is she has become his carer, whether he uses that term or not. The dynamics of the relationship have completely changed which will be difficult for OP to deal with as well and she deserves support.

@Itradehorses I do not think you understand the nuance of what we are saying

Of course you are a carer. My DH has to have support staff in 13 hours everyday, but I am still a carer for him too.
FWIW, my husband became tetraplegic overnight due to an undiagnosed spinal fluid leakage. I don't do the bowel care but I feed him, help him get out of bed and into his wheelchair when I can.
I also do all of the food shopping and other essentials whilst looking after two kids too.

You are most definitely a Carer and I think if you look it up on gov.uk, I am sure there is a link to see if they can help and other info.

Your DH is not being fair to you, this is your life too xx

Please look into your local carers centre. They are great organisations purely focused on your needs as a carer. They can help you ensure yiu and your family have all the support you’re entitled to and often provide some practical support such as respite care as well as providing you with a network of other carers who “get it”. Wishing you all the best.

There is a significant difference between being a wife and a carer, or a mother and a carer:

The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work.

….

An accepted definition of a carer is, "Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age.”

…

Around half of all carers are effectively excluded from paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. Their work has huge economic and social impact, being valued at over £87 billion in the UK alone.

Carers’ Rights