Stuck in a toxic situation because I’m too ill to parent on my own

[Bananano]

I’ve been ill since I had my DD five years ago, but I’ve been housebound and partially bedbound for around two years. It’s quite similar to MS.

I was in a really bad relationship with DD’s Dad, who isn’t an awful person but I’m convinced that he has an undiagnosed mood disorder like Bipolar or something because his whole personality completely changes every few weeks. It’s a bad, toxic situation to be absolutely fine one week and then treading on eggshells and having my mood constantly dragged down by his sulking the next. We separated and now live in different houses, but I rely on him for so much that I end up seeing him nearly every day, messaging him most days, having to plan and discuss things all the time, he often comes into my house to help with more physical jobs.

He’s also become my entire social network since I became ill too, so if I try to cut him out I go weeks without any adult conversation. I have no idea what to do or how to remove myself from this mess, because my DD is 5 and I can’t cope on my own with her for long at all. After a few hours I’m in so much pain and so exhausted that lights and sound become really painful for me and all my muscles seize up and stop working properly, so I only have her on my own every other weekend and school nights and it takes me days just to recover from the flare up that spending time with her causes.

I don’t have any family or friends and social workers have told me that there’s nothing they can do to help me. I’m trying to simplify my life by being a minimalist, buying pre-chopped veg and meat even though it’s a lot more expensive and I’m on a tight budget. I even caved in a few weeks ago and started giving DD freezer food most evenings, but there’s still no way that I’d cope on my own. I have DD 60% of the time BUT her Dad does all the school runs on my days as I can’t get there. She hates being away from me as it is, and her Dad just sits her in front of a screen all day and gives her chocolate and McDonald’s to eat so him having her more often would be an issue in itself.

Not sure what I’m looking for here, I just feel so trapped and don’t see any way out of this, but maybe an outsiders perspective would help?

Tell us more about when you last spoke to social services.

Have you spoken to DD's school at all?

This doesn't sound right at all but of course I know social care is so sparse. But you shouldn't be left in this abusive situation.

@JanglyBeads there’s not much to tell really, I request an assessment every 6 months and they always tell me that the only thing they could do is send in a carer to prepare a sandwich for me or help me wash. I can manage these things myself so that wouldn’t really help, it’s the parenting side of things that I’m struggling with. I asked them about direct payments for help hiring a cleaner, but they told me that that’s what PIP is for.

I haven’t spoken to DD’s school, what would that achieve? (Genuinely asking, I realise that could possibly come across as sarcastic!)

Also apologies if this is the wrong board. I assumed that life-limiting meant that the illness limited your ability to do normal things, but I see that there are a lot of cancer posts so maybe I’ve misinterpreted it.

I'm so sorry that you are having to deal with this. It must be very difficult for you. Are there any charities linked to your illness who might be able to help? Or what about local churches if you are religious? Might Home Start help? (I'm not sure if it's applicable or not)

OK. I was just thinking that the school will have a parental support worker or access to one - because that's what you need as a starter - parental support! Also all of this will be having effects on your DD - how is she in general? They may have noticed things at school and even if they haven't they have a duty to follow up any concerns raised. You say she doesn’t like going to her dad’s, that needs exploring.

Good idea above about contacting the relevant charity for your condition, they’ll know about all possible forms of help available.

Are you sure you’re receiving all possible benefits, you mention PiP? I wonder you should at least try the offer of carers to do minimal stuff, on the basis that any help is useful?

Basically your ex sounds abusive and therefore you shouldn’t have to have anything to do with him. You could contact Women’s Aid (phone line or Chat) or your local domestic violence organisation they will listen and advise (They don’t just deal with physical abuse situations.) They will understand, but will not push you into anything.

Women’s Aid helpline is at the bottom of the linked page below. Just because Refuge is mentioned doesn’t mean you have to be asking to enter a refuge, they’ll help you work out the best solution for you.
www.nationaldahelpline.org.uk/

You have “no family or friends” - I’m sorry there must be stories there - it sounds like you could do with people to help you access the community more, and make some friends and get support in all sorts of ways. As suggested, a church or food bank or other charity will have suggestions about people who could help you do that.

So I’d suggest exploring all of these things but appreciate that it all takes a lot of time and energy which you don’t have. Maybe start with one - disability charity or Women’s Aid or school, and see where that leads you?

(Life limiting does generally mean conditions that shorten life, but that's not obvious, I agree. You could ask for this to be moved to AIBU or Relationships, or there’s MNers with disabilities under Special Needs, but that seems quite quiet.)

Meant to say, Home Start is a good idea, yes. Or sometimes local colleges will place student nursery nurse or social care students with you, no charge because they need the experience.

OP I hope you're OK?

You need to contact children's charities and request help. This one might be a start. www.careforthefamily.org.uk/support-for-you/family-life/parent-support/

Oh yes, Care for the Family very good.

I think barnardos work with children whose lives are affected by having a parent who is ill. They might be able to provide some support to both you and your daughter.

I would definitely accept any help SS offer even if it is just peeling a few potatoes or making a sandwich for you. Every little bit helps. The more they can do the more you can save your energy for you little one. Explore Sure Start. Could you advertise for Mother's help for an hour each evening? Or get a cleaner a couple hours each week. My cleaner hangs out washing and changes bedding. That would be a good help for you.

If you have Young Carers in your area please contact them, they can offer your add support, include her in activities they organise and the one in our area even had volunteer drivers to pick up the Young Carers.

Please speak to your DC's school. My DC's school were amazing with them, the head teacher used to have little chats with them, the student support worker made sure they were coping ok, etc. they were the ones who arranged the Young Carers referral. Another mum who has MS - they helped her access funds for a mobility scooter so she could walk her DC to school, and helped her navigate referral processes for the DC and for herself.

I’ve only just checked back here - thanks for all the suggestions! Unfortunately I live in a pretty small town, and after checking it seems that most of these organisations are unavailable in my area. My council appears to run the young careers scheme, but my DD doesn’t care for me so not sure if that would apply to us?

I did have a cleaner until recently but it actually made life more difficult for me, as I had to make sure every room was completely tidy at the same time each week before she came, and then I’d have to go out for two hours when she came which left me far more ill than if I’d just spent two hours cleaning myself.

DD doesn’t know that I’m unwell, I carry on caring for her the same way that I always have done and then stay in bed the entire time she’s in school or at her Dads so that I can recover in time to give it my all again once she’s home. She does get really disappointed that I don’t come on days out anymore, that’s definitely the worst part. If I cut contact with her Dad then my illness would likely begin affecting her, which is my big dilemma. I’d prefer her to see him as little as possible, as though he’s not quite abusive he is very negative and an emotional/energy vampire, he just sucks all the positivity from a room so I feel awful sending her to stay with him.

Why would you cut contact with her dad? He seems to do quite a lot for you, even if he's, not the most hands on father.
You don't need to go out when your cleaner comes. Get one that tidies as well as cleans.

Get your carer to chop up your veg and meat for stews rather than making sandwiches.
It seems to me you're trying to accommodate the people you're employing rather than paying people to accommodate you. If they don't meet your needs, get rid and find someone who will.

Long term OP, some extra-curricular activities are going to be really important for your daughter. Something like brownies could be brilliant because it eventually turns into guides and doing camping trips and things - things you may not be able to do with her yourself.
Enrolling her in a little sports team or dance or gymnastics would be great too - and if you can manage to take her to any of these activities yourself then that would help you to meet more mums and build up your network a bit.
Organising these things for her and talking to her about them is just as much a way of good parenting as doing these physical activities with her yourself.
I appreciate these things cost money but do look into any and all schemes that might exist to make them affordable - brownies is usually pretty cheap anyway, and sometimes schools or the local council do dance and sport groups with lower fees. You could ask your ex to go halves on the fees too. And do look into the young carers thing.
It’s understandable that you want to pretend everything is ok to your daughter, but you might find you can actually do more with her if you stop trying to hide your illness completely - like perhaps if you can get funding for a mobility scooter you might be able to go out with her more because you won’t get so exhausted (sorry if I’m off the mark about how your illness affects you - take it as an example).

I would accept the offer of carers from the council. When they come I would ask them to prep dinner into a slow cooker and turn it on ready for the evening meal each day.

i would also get a cleaner. When you’re speaking to the cleaner explain about your illness and that the job therefore involves tidying, doing some washing, and cleaning round you whilst you stay in bed.

You can also ask the cleaner and carers to do some of the jobs in the house which your ex does to reduce your reliance on them a bit.

i would also find a weekend club close to your house that your daughter can do each week to give you a break on your weekend.

finally I recommend following pp suggestions about speaking to school and accessing a young carers charity. She doesn’t have to be caring for you to work with young carers - just affected by your illness eg fewer days out.

Any kind of care you accept will help even if it’s something you can do yourself. If someone else makes the sandwiches and cooks the tea that 20 mins more of quality health time you get with your daughter

Hi @Bananano

I just wanted to say I'm so sorry you and your DD are in this situation.
My mum got really sick when I was 5 and she nearly died. She developed ME. She tried to do all the things she used to do in front of us but ultimately it absolutely wore her out and we started to see her frustration.
Even if DD doesn't 100% know about your illness, believe me, on some level she will. That's not a dig I promise, just being honest.
When we live with parents who have developed an illness, regardless of how they try and act, we know something is different, and not for the better.
I really don't know what you could do, I wish there was help when I was little, pp advice on charities sound good but I understand this may not work and also most likely totally exhaust you in the process.
Good luck, and take care of yourself and your DD 🌈

When sre you seeing your consultant next who gave your diagnosis? They can make a direct referral next time you're in the clinic to social work?

@MarshaMelrose
Why would you cut contact with her dad? He seems to do quite a lot for you, even if he's, not the most hands on father.

The man who makes both mother and daughter unhappy (probably understatement), creates a toxic situation making the OP feel like she's on eggshells and sucks anything positive out of any situation?

Does the OP really want him in her already extremely difficult life?

OP it doesn't matter if none of the organisations we suggested are based in your town, there will be branches in a larger town who cover your area, at least in some cases, if not all.

If you start with school, the parent support officer (who may be based at another school but have responsibility to meet with parents at your school and support them too) will know about local services.

That’s the whole point of my post. My daughters Dad is a negative influence in my life. Being anywhere near him makes me miserable. I can feel absolutely on top of the world and then I get a nasty comment from him at pick up or drop off that leaves me feeling like shit all day. He’s completely unreliable. He always promises to do favours then never does them so I end up stuck because I was counting on it happening because he’d said he would. He gets really angry and nasty over everything. I deserve far better than that sort of treatment, regardless of how much he helps with our daughter.

Thank you, these are all brilliant suggestions. She currently has swimming lessons, gymnastics and school football every week and seems to want to chill out a bit after those. Her Dad has no money to contribute unfortunately, I have to pay for his monthly bus pass to take her to school and get to her different clubs, as well as pay for his entry fee at theme parks, farms, zoo’s, wherever I can convince him to take her or she wouldn’t get out at all.

I did actually find a nice little child seat attachment for a mobility scooter today! I’m too embarrassed to use one just yet though as I’m only 25, but I am trying hard to work myself up to it.

Just because a few people have mentioned it - I’ve developed pretty bad social anxiety through being isolated for so long, so having strangers in my house is stressful for me and makes me feel even more ill. Plus I’m really house proud so can’t help but force myself to have the house spotless if I know there’ll be visitors. I understand that it would be a helpful option for some people, but for me making food and cleaning one room a day at a nice relaxed pace uses much less energy than coping with strangers in my home would. Plus there’s only one care agency that covers my area, and I worked for them up until 2 years ago and heard how much the other carers called the service users names and insulted the state of their homes (to each other of course, not to the service users faces!).

@MichelleScarn I’ve only seen my consultant once as there’s no treatment available for my illness. I had a few visits from the occupational therapist who suggested that I get a dishwasher and drink meal replacement shakes instead of making food whenever DD wasn’t here (both brilliant ideas that have helped a LOT), but I think she’s said all that there is to say now so I don’t see her anymore.

@firstbabyworries that’s the diagnosis that I got too, did your mum ever get any better? My DD can definitely tell that I’m not as fun and active as I used to be, but she’s still very demanding so I take that as a good sign that she still thinks I can manage things😅

Why don't you at least ask if you can see the OT again if you found her helpful? You absolutely need more help.

@Bananano unfortunately she didn't get better. She still has ME now, 30 years later. She has good days and bad. It's so hard for people to understand because when they see her at a good moment they just don't understand.
Just wanted to say I'm sending you so many good vibes, your DD too