Is it me? Very long..

[twojumpingbeans]

Right, this is a loong one. I feel like I'm losing perspective a bit and would very much appreciate some objective views..

DH and I have two DDs. DD1 is 5 and a complete treasure, DD2 was born with a genetic condition we knew nothing about (Cystic Fibrosis) and is 10 months old, she was quite poorly at birth before diagnosis from the heel prick test, she's a total joy too. She spent most of December in hospital but is reasonably well at the moment.

Anyway, keeping her well involves LOTS of work, loads of physio and meds. It's bloody hard. I do the lion's share of this, I'm up every day at 5 and don't stop for a drink (literally) until DD1 is at school and DD2 is asleep. I'm back at work part time too, I'm exhausted. I feel completely empty, like a used teabag. I'm constantly battling to keep all our lives on an even keel. I organise everything for the girls, their clothes, their food, their pick ups and drop offs, every single finite detail of their lives is stored in my head and I'm so tired. Most of the time I can cope with this but it would be brilliant for DH to be able to feed DD2 without asking me how much meds? How much food? What shall I give her? What if she doesn't like it? Where are the bibs? Ad infinitum. It's the same for the older girl too, I asked him to get a warm hat for her to wear to school today and he didn't have a clue - which one? Does this fit her? Where are they? AAAAAARGH.

I have an amazing CF nurse who can see that I am struggling a bit at the moment and has arranged for me to chat to the psychologist attached to the Cystic Fibrosis Unit at the hospital. I don't feel I've come to terms with DD2's diagnosis at all, I'm frightened to think about the future and know that it's a good idea to talk to someone about it. The problem is DH, I do not want to talk to him AT ALL. I can't bear him near me, we sleep in separate beds. Every time I ask him to help with the huge amount I have to do his response is 'when is your appointment?' Like it will solve all his problems and make me back into the easy going fun loving me from the past.

Today, he had the option to work from home because of the snow, he chose not to. I'm so angry, I'm ill, exhausted and have a cold. Just catching a cold led for DD2 to be hospitalised for over two weeks last time and just because its difficult to be at home he's buggered off to work, putting DD2 at risk.

How do I get him to listen to me? I'm so fed up. Is it me? Am I being unreasonable to expect him to 'know stuff'?

Sorry if this is an incoherent ramble, just needed to get it out!

"The problem is DH, I do not want to talk to him AT ALL"

You're not going to resolve this by exclusion. Only by inclusion. Sometimes when one person goes all out to be 'capable' it can make the other person feel like they don't matter. They try something or ask a question like 'how much meds' and they get it wrong or they get told off for not knowing .... so they take another step back. They aren't as involved, they don't know the score, they absent themselves further. Vicious circle

So he has to be included - forcibly if necessary. At the appointments, the discussions, in the therapies, in the meds. But at the same time you have to let him make mistakes or ask questions or he won't learn. You have to occasionally just leave him to it. All the time you think that 'if you want the job doing properly, do it yourself'... that's exactly what will happen.

Oh sweetheart, I'm not surprised you feel shattered. It's a mental tiredness when your caring for someone, like there's no more head space.
Have you considered writing down exactly what you do. Tell him you need more help & you need him to learn it. So note on the door;
Breakfast, porridge / toast
Meds, x y z
Lunch, spaghetti on toast / beans
Meds, z & x

If he can help and help properly you'll feel less resentment and more of a team.

Poor you. Do you have a social worker? Is dd2 too young for things like dla and a care package? Are there any support groups or parents groups near you? Can you employ a cleaner or support worker?

Yes your dh needs to be involved but unless he gets a personality transport you are always going to be the one who knows more about your dds' needs so do everything you can to make your life easier in other ways.

And make the lazy bastard get up at 5 am too sometimes - at least to make you a drink and some breakfast while you're slogging away.

can second the couples counselling. you are both dealing with this in different ways. He has to see the strain this is having and probably doesn't realise. resentment will fester otherwise and that kills all love and respect.

in the short term (and this is only a short term solution to try and reduce your stress levels - in the long term will only continue the issue) write lists and diarise things. get organised. so that when he asks you can respond 'look in the diary' 'it's written on the checklist' 'the hat on her peg' and refuse to actually tell him. or you could resort to my standard lines of 'you have something between the ears i suggest you use it' or 'you're an adult, you can work this out for yourself'. but the converse of this is to try and not criticise the food choice or the ridiculous clothes combo! (unless damaging or completely inappropriate)

sorry, meant to say - you sound amazing.

"every single finite detail of their lives is stored in my head"

That doesn't really help your DH. As said earlier... you have to get it out of your head and somewhere it can be understood and acted upon by others. A detailed schedule which you can then break down into shared tasks. We have one in our house because I don't have a DH or DP and sometimes grandparents have to turn up at short notice and pick up where I leave off.

Thank you for your replies - I know that I need to let go more but if he does do something wrong there are consequences, it's not like DD2 will just go hungry or be a bit ratty, she will be poorly. He should get it right, as far as I'm concerned there are no excuses for exposing DD2 to risk or not getting her meds right. He's been to all the same appointments as me so why am I the only one to ever retain any information? He is too passive and relies on me for everything. He has no idea what size clothes the girls have, size nappies of DD2, shoe size of DD1. Why not? I have told him countless times but it doesn't stay in.

I have done the lists for meds and feeds. He still asks. How can I ignore it when the consequences are so serious. When you have a poorly baby there can be no trial and error. You get it right.

I think, essentially, I just need a break. I don't even know who I am any more. My life has become very very narrow and small. I used to have hopes for my children, I used to be an interesting person. I'm not anymore. I feel old and invisible.

Every day when DD1 comes home from school I ask her to tell me three fun things about her day, it's our little ritual. She loves it and it keeps her pecker up (if you know what I mean) maybe I should do it too?!

Thanks again, you're a lovely bunch.

Agree with cognito. It sounds to me like he feels a bit insignificant and thinks it might be easier to stay out the way. I think you need to trust him a bit with the kids and hopefully he will feel more needed and eventually learn what meds clothes etc the girls need.
I can understand your frustration though. Sit down and have a chat or both write out things that are frustrating you just now and chat from there.
Good luck

Some people are good at remembering stuff and some arent'. Some people can retain facts simply by listening or they have to refer to notes. Others are better at retaining information in pictorial form or they have to colour-code everything. I understand what you are saying about risk and illness... obviously the down-side of a mistake can be serious... but do you understand why being constantly told he's doing it wrong is making the man switch off and detach? It's demoralising.

You can't ignore him because you need to work together. Rather than you making the list and him trying to retain it, why don't you give him the challenge of coming up with a system that works for him? You already have it all in your head and you're reinforcing the knowledge with practical application ... he is not in your head and not getting the practical application either.

I don't ignore him or exclude him, he doesn't listen. I don't know what more I can do, I am fully aware that people learn in different ways (thankyouverymuch!)I give him lists, prompts, lots of encouragement and praise and he comes to every hospital appointment with us.

Caring for a baby with CF is complex, drugs have to be given at certain times. Some one hour before food, some two hours after food, some with fatty food blah blah blah. DD2's routine has been designed with dieticians, drs, nurses and Physios. I don't think it would be wise to 'leave him to work it out for himself'. Plus, I think the problem is - he doesn't want to. He doesn't want the responsibility that I have as he doesn't think he would cope.

I feel perhaps I haven't been clear, DH thinks I am losing it. He sees the appointment with the psychologist as the be all and end all and therefore, everything that I say to him is filtered through this. He thinks it will solve all our problems. I have never denigrated him, or made him feel unimportant. He knows we all need, love and value him. I just want him to know what to do!

An example, we went to the supermarket the other day, he had four things to get, I told him lots of times, offered to text him and wrote a list. He forgot stuff. We both laughed it off at the time but it is fairly indicative of how things are round here. I am drowning in responsibility - not by choice.

Perhaps I am wrong though, and I just can't see it. That's what I mean about my life becoming very very small. I am loathe to say that unless you are a carer for a poorly child you can't understand but maybe....?

Honestly, I really value your responses, it's useful to see things from the outside, as it were.

It does sound like he's opting out mentally - like it's your thing to think about, so he doesn't bother remembering.

If he won't listen to you (which is crap ), then perhaps doing some relationship counselling or having your CF nurse or someone like that confront him on your behalf?

Your situation sounds really tough.
I think one parent knowing the rules more and the other not being as confident is probably common enough but is much more of an issue given your DD2's needs.
How about letting him practice (for want of a better word) on DD1? Getting him to take most of the responsibility for her needs. If she wears the wrong hat or is a bit delayed eating etc it sounds like this wouldn't be as much of a problem? Maybe that would give him more confidence in taking some responsibility for DD2?
Are there tasks that are the exact same every day for DD2 that he could learn to do?

He doesn't learn because he doesn't care.

Once he actually takes responsibility he can learn what he has to.

If he forgets things, he should take notes.

I'm not brilliant at remembering lots of things, so I make lists. Or write down medicine times on the bottles, or set up alarms on my mobile, for example.

You sound like an amazing mother, and person, and I do hope things improve for you :(

Ex-DP was the same with DS (though a different situation as DS does not have a condition) - even the smallest task or responsibility was met with a barrage of logistical questions, "How do I unlock the pram? Where are the shoes? Where is his coat? Shall I take milk? Is he allowed a banana? Where is the toothbrush?" and on and on. And yes - two things to get from the supermarket (5 mins away) - he'd always forget one. Unacceptable.

Only after our relationship broke down and we divided time with DS equally (i.e. I was not there when he was caring for DS) did he man up. And he did man up! Turns out he was more than capable of being an excellent parent, he just DIDN'T DO IT when I was around to 'know' everything. Because he didn't have to make the effort. I'm sure tehre was some kind of inferiority complex surrounding this but, genuinely, I believe much of it was just 'letting' me do it.

So, have no fear, your DH was competent enough to grow up, get an education and hold down a job - he CAN do this. He just has to realise that he can, and that if he doesn't, he will drive you round the bend and potentially lose you. Fear works wonders - he HAS to do this. It's ultimatum time. You are not in the wrong; you are effectively single parenting a poorly child as well as handling a part-time job, and making sure DH's life runs smoothly! It's too much.

DH thinks I am losing it. He sees the appointment with the psychologist as the be all and end all ... everything I say is filtered through this.

To put it harshly, he thinks you must be mad to be stressed out. How very fucking dare he

Your problems do not arise from your attitude, they're real and immediate and will not go away. It's convenient for H to imagine they're not all that real; it absolves him from having to actually care enough to do something.

I agree fear is going to be the motivator. You'll have to tell him he either starts being a competent parent or fucks off to play at being carefree. It might be easier to do this after your first psychologist appointment - put things on the line clearly enough there, and the advice is likely to involve some stern feedback about getting better support from H.

As a side note, therapy could open doors to more pragmatic support for you. Even if you do get some, it must not be used as a crutch for your husband. Put him on a final warning.

Good luck. Your girls are lucky to have you.