Terrible confession

[Adventurine]

I'm about to say something terrible. And I only say it here because you don't know who I am.

I have a DD who has a neurological condition which can fluctuate. Some days she can walk. Some she cannot. She has tremors, clonus, spasms, dystonia, tics, incontinence, fatigue and complex pain.

This came out of nowhere for her a couple of years ago. Like- boom- now you can't be "normal."

I get how hard it is for her. I really do. But she is so so demanding and I swear she sees me as little more than her personal servant. What really pissed me off this week is that I have Covid, I'm really struggling, my other two kids have Covid, DH has been away for work. She's been off school after a recent spell as an inpatient trying to manage pain around her spine. She is sending me messages like "Mum, can you come and help me move to a more comfy position" and "mum, I'm hungry, can I have noodles" and "can you bring me a cold drink?" But if I don't respond within a few minutes she'll do this relentless whimpering that's so loud you can hear it anywhere in the house. On every outward breath. And she can keep it up for hours.

She can get herself to the loo. She can get herself up to get some chocolate or to plug her phone in or get her laptop. That's no issue. But everything else she seems to want to be served, regardless of how active or inactive her condition is. And this is round the clock. When it's terribly bad, of course I am there, but I don't see that I need to be stuck to her like glue and indulging every demand when it's not!

Today I have said to her that if she makes that kind of whimpering "I'm in agony" noise when she's just being mildly inconvenienced, she runs the risk of not being believed when she is in agony, since people will be so used to hearing it it won't spark any concern. I also told her to be respectful of the fact that I have three children who all need my help at the moment and that I am pretty bloody ill myself, so please dial down the whimpering and the demands, it's not fair, especially when I can literally see she's done stuff for herself like getting chocolates and ice lollies etc.

She didn't send me a message all day and was getting herself about, then just now she's messaged me saying she's in unbearable pain but she's trying to keep it under wraps so it doesn't inconvenience me and her siblings, and she's starving so can I please make her some lunch. She's made herself a sandwich half an hour ago and she seemed fine then. I KNOW when she's in pain. I feel like she's maybe taking out her frustration of her bodily limitations by getting me to do everything? I don't know. She soon snaps out of her infirmity when friends come to visit! Obviously not on terrible days, she wouldn't be able to, but on all the other days where she communicates a sheer inability to do anything so that I have to do it all.... if a friend comes, suddenly she's capable of getting up, doesn't make the whimpering noise, will happily go and get drinks and snacks etc, will do makeup and things.

It's pissing me off and I don't know how to address it properly because she does have a condition that requires an awful lot of support and she attends a school equipped to give it. No learning difficulties, just physical ones. I can't see how to tell her I'm not her goddamn slave without upsetting her and potentially making more work for myself as huge relapses in her condition are often brought about by stress.

AIBU to feel pissed off and really worn down by it?

@Doubledenimrock

Has she tried CBT OP? There is a very interesting connection of perceived pain by building up an expectation of it. This needs addressing. I'm not saying she is making it up but quite possibly she is setting herself up for more pain by pre meditating it...whimpering etc.

She has, in the early days. This was more for the tremors and dystonia. Not to make them go away because they won't and it isn't magic, but just to help her to feel that she was not totally at their mercy. I've asked for it again in terms of pain management but like everything there is still a huge backlog to get through

Yes there is a waiting list for everything isnt there. I'm glad you are asking for it again though OP. At one point I experienced an extremely painful debilitating condition and found CBT useful. However, I am an adult and understood entirely why I was practising CBT for pain. It can help to reroute some of the neural pathways that are built up in the brain when long term pain is experienced. Helping to experience the perception of pain less acutely. The whimpering wont be helpful so it's good to call her out.

I am not sure I can give any advice but she sounds EXACTLY like my friends daughter and I know it nearly broke my friend. She had to stop work because of it and had another daughter who thankfully was a saint. In the case of my friends daughter she had a broken hip and due to many complications (I can't remember all the details) was unable to walk without crutches for about two years. She couldn't go to school or do any sports etc, lost a lot of her friends and was housebound apart from walks out in a wheelchair. She took to banging on the ceiling at all times of the day and night with a crutch to get mum's attention. Mum's bedroom was on top of hers and she would bang on the ceiling waking mum up in the middle of the night (numerous times) to ask for water, snacks, attention etc. It was awful for my friend coping with it. Of course she loves her and would do anything to make her comfortable but the demands were so extreme and really unnecessary. She could have got up with her crutches and had a bedroom on the ground floor but chose to wake mum up instead.

Anyhow OP, I just wanted to sympathise and say I hope you can get it sorted and ignore the stupid shitty comments that a few have made.

I don’t think there’s anything wrong in being at the end of your tether. Being a carer is draining and a hundred times worse if you are ill yourself. I think if you can get her when she’s in a receptive mood explain to her that you’re doing her no favours by pandering to her on her good days because it could have long term negative consequences for her as well as you-physical, mental and your relationship.

You could also say you’ll look into getting some extra help in from a third party as you’re struggling when she makes demands of you even on her good days. That might make her stop trying it on on the good days as I bet she won’t want a stranger in the house. It’s difficult to tread the line between empathy for an ill teen and calling out unacceptable behaviour so I don’t envy you. Hope your situation improves.

I dont want to sound draconian but if shes not well enough to do basic tasks she cant be well enough to see her friends on those days? Does she need to go back to the doctor? Would it work better for both of you now that shes getting older if you give up a carers allowance and pick up extra hours? Not ideal and may not be possible but perhaps she would respond better to someone else?

respite care?

OP all the hugs and wine and chocolate for you. I can relate to being desperate to have a break and nobody willing to take the child. If there was anyone to take her even for an hour so you can rest...?

I think it's completely reasonable to explain that you are very unwell and the other two also ill - normal service is not possible at the moment and everyone including her will have to suffer through the best they can until you are better. Take care xx

Oh you poor thing.
I think there are two things here.
Now is a crisis because you are ill. When your DH gets home he needs to take over completely and deal with all the children while you just go to bed. He needs to tell DD that you are too ill to do anything for her tonight.
Secondly the ongoing situation. You need some changes otherwise you will crack under the strain.
I know it's hard for DD but you are still her parents and she should not be excused bad behaviour because of her illness. You both need to sit down with her and explain how you feel and that you are going to make some changes. Lots of good advice on here, pick out what might help. Tell her you won't respond to the whining so if she needs your help she must desist. Tell her you won't tolerate her being snarky or sarcastic.
Life could be more pleasant, even if not what you all hoped for.

Meant to mention mindfulness can also be really helpful, helped my tinnitus, and I know folk who have been very successful in using it for neurological conditions. Good luck OP

It sounds like you are having a very hard time. Right now is particularly hard - but you won’t have coronavirus forever. Realistically, you probably don’t have the energy or headspace to make any changes right now.

Longer term, you will need to make some changes because this will grind you down. I am not a good person to make any suggestions but I like the idea of the scale(1 to 10).

@SexiestDogWalker I have no experience of what you’re going through, only experience with a 15 yo teen, so I take my hat off to you and hope you get the much needed support required right now.

@SexiestDogWalker

I hope I don't upset you with this . But your dd is taking the piss. Yes she has a disability but she's milking it. You (know) when she's having a bad day and needs you. You also know when she's having a good day . If she can get lolly then she can get the to control and other stuff she needs. Obviously when she's having an actual bad day that's different and it sounds like you do your best. On top of that your ill with covid. You said she does not have a learning disability so she is capable of showing empathy and understanding other people's situations?

Be kind to yourself do not feel guilty by putting your food down on the good days.

The only thing i can think to suggest to help you is make her bedroom more accessible to the things she needs.. Has she got a side table the remote can be placed on so not lost. A refillable snack box near her bed so you dont have to keep going too and fro.... Putting a jug of squash and a glass in her room so she can refill etc. Anything to save you running up and down.
You deserve some respite too.. Can you get a family member to help at all so you can have a rest?

You need a break, SexiestDogWalker. You do your very best for your sick daughter but everyone - every carer - needs something for themselves. See what you can find out about getting some respite. If you don't put yourself first occasionally, your health will suffer and so will everyone whom you support.

I'm glad your husband will be home very soon. Talk it over with him. I hope your covid symptoms are soon resolved, I know how awful that can be.

I’m really sorry about your not being able to do anything for yourself. I find as soon as statutory bodies identify you as a carer (and as mother of course people are going to expect that of you) you are fair game. I’ve seen it time after time in the NHS, only rarely does anyone enquire about the carer or stops to wonder if they really can manage everything expected of them. It then becomes a kind of second nature and the carer just sucks up everything asked of them, it’s horrendous. It’s so necessary to protect yourself, screen out the unreasonable demands and put systems in place to protect your “me time”. A lot easier said than done and no one is going to help you protect your own time, I found I needed to develop a thick skin sometimes.

I really feel for you. A lot of this matches what teens are like already- join the thread in teenagers for moral support on the moodiness front.

My only tactic to suggest is saying that yes you will do x, just got to do y first, and basically be just slow enough that she could make the effort herself if she is genuinely ok. But if she is genuinely not ok, she will still receive your help, but slowly.

I find it easier to agree with people who are being a PITA and then take my own sweet time, than waste energy arguing with them. 9/10 it gets resolved before I have to do anything ....

You have received some good advice here OP, focus on those posts rather than the judgemental ones.

Does DD have an EHCP? If so, CBT can be included in there without the need to be sat on the normal waiting list. If she doesn’t have an EHCP you should apply for an EHCNA.

Dear O.P
That sounds really difficult, I'm so sorry. When I was Ill with covid recently I would have struggled immensely to look after my 2 children, you absolutely have my full sympathies feeling so Ill and not being able to just rest and recover.
On a long term note, I think counselling for your daughter would be good. It does sound like she is taking advantage of you at times (of course I know there are times when she does need you). It would be great if she could be at the stage mentally where she is driven and determined to achieve all that she can in spite of her condition. I wouldn't be surprised if the fact that she is on the teenage years is a big part to her attitude in all of this. Although 2 years prob feels like a very long time with all that you have all been through you are likely all still adjusting and processing the fact that all your lives changed quite a lot over night pretty much.
I wish you and your daughter all the very best...

@SexiestDogWalker

I'm about to say something terrible. And I only say it here because you don't know who I am.

I have a DD who has a neurological condition which can fluctuate. Some days she can walk. Some she cannot. She has tremors, clonus, spasms, dystonia, tics, incontinence, fatigue and complex pain.

This came out of nowhere for her a couple of years ago. Like- boom- now you can't be "normal."

I get how hard it is for her. I really do. But she is so so demanding and I swear she sees me as little more than her personal servant. What really pissed me off this week is that I have Covid, I'm really struggling, my other two kids have Covid, DH has been away for work. She's been off school after a recent spell as an inpatient trying to manage pain around her spine. She is sending me messages like "Mum, can you come and help me move to a more comfy position" and "mum, I'm hungry, can I have noodles" and "can you bring me a cold drink?" But if I don't respond within a few minutes she'll do this relentless whimpering that's so loud you can hear it anywhere in the house. On every outward breath. And she can keep it up for hours.

She can get herself to the loo. She can get herself up to get some chocolate or to plug her phone in or get her laptop. That's no issue. But everything else she seems to want to be served, regardless of how active or inactive her condition is. And this is round the clock. When it's terribly bad, of course I am there, but I don't see that I need to be stuck to her like glue and indulging every demand when it's not!

Today I have said to her that if she makes that kind of whimpering "I'm in agony" noise when she's just being mildly inconvenienced, she runs the risk of not being believed when she is in agony, since people will be so used to hearing it it won't spark any concern. I also told her to be respectful of the fact that I have three children who all need my help at the moment and that I am pretty bloody ill myself, so please dial down the whimpering and the demands, it's not fair, especially when I can literally see she's done stuff for herself like getting chocolates and ice lollies etc.

She didn't send me a message all day and was getting herself about, then just now she's messaged me saying she's in unbearable pain but she's trying to keep it under wraps so it doesn't inconvenience me and her siblings, and she's starving so can I please make her some lunch. She's made herself a sandwich half an hour ago and she seemed fine then. I KNOW when she's in pain. I feel like she's maybe taking out her frustration of her bodily limitations by getting me to do everything? I don't know. She soon snaps out of her infirmity when friends come to visit! Obviously not on terrible days, she wouldn't be able to, but on all the other days where she communicates a sheer inability to do anything so that I have to do it all.... if a friend comes, suddenly she's capable of getting up, doesn't make the whimpering noise, will happily go and get drinks and snacks etc, will do makeup and things.

It's pissing me off and I don't know how to address it properly because she does have a condition that requires an awful lot of support and she attends a school equipped to give it. No learning difficulties, just physical ones. I can't see how to tell her I'm not her goddamn slave without upsetting her and potentially making more work for myself as huge relapses in her condition are often brought about by stress.

AIBU to feel pissed off and really worn down by it?

I say this based on what you have written , it seems yes at times the conditions may be bad, but it seems like, she likes having a personal assistant to order about, especially if one moment she needs help, then all of a sudden when her friends appear she's not needing assistance, only you can know as and when she truly needs help, and I would aim to assist when help is actually required.

I’m just wanting to offer sympathy and total understanding… my daughter developed a chronic illness at 17 and has deteriorated in fits and starts and is now pretty much bedridden.
I also have 2 younger children one of whom is SEN and has behaviour issues.
Being a full time carer is relentless and exhausting. But you need to be able to say ‘no’ to your daughter or you will not be able to keep going.
My daughter is the tech wizard in our house so is responsible for setting up new phones and all that kind of stuff. She also sorts s lot of online ordering for me.
The last time I was ill it was my daughter and my SEN son who looked after me and each other… I still remember it as a kind or holiday!
Your daughter can do so much more than she thinks … maybe giving her a job would help?
Look after yourself Covid is vile… we all had it a couple of weeks ago and if you don’t rest you will take weeks to recover (in my experience)

I think that you have compassion fatigue and would benefit from using a therapeutic parenting method. I recently read the A-Z of therapeutic parenting by Sarah Naish which encourages identifying the nurture need behind behaviour. It sounds like DD has become so used to accepting your help that she’s forgotten that as a teenager, she should be learning to be more independent and leaning on you less.

It’s also important to keep in mind that she’s a young person with a disability but she’s also a teenager and either one of those is a challenge by itself, so give yourself a bit of a break. You’re finding it hard because it is hard.

@Imitatingdory

You have received some good advice here OP, focus on those posts rather than the judgemental ones.

Does DD have an EHCP? If so, CBT can be included in there without the need to be sat on the normal waiting list. If she doesn’t have an EHCP you should apply for an EHCNA.

She does. I didn't know it could be included. I will email her coordinator

I also wonder if you are/could apply for DLA so that you could pay someone to spend a few hours a week with your DD so you can do things like go to the gym? There’s no wonder you’re so ground down if you have such little time/opportunity to do things for yourself.

I also hope you’re feeling better soon

SexiestDogWalker yes, it can be. It should be specified and quantified in section F, therefore if the NHS can’t, or won’t, provide it the LA must commission independent provision. The same for physio, OT, other MH therapies and anything else that ‘educates or trains’.