Advice for how to deal with this

[Tired2015]

I have a progressive disease. My DH knew before he married me, as I was diagnosed shortly before we got engaged.

The disease affects me physically, rendering me unable to; think straight, drive, or even walk properly when I'm having a bad day.

A normal day involves living exhausted, struggling to do normal every day tasks, and not managing with them very well. But its a largely hidden disease, and so isn't obvious unless I fall over and break a bone (which happened last year). If you met me in the street on a bad day, you'd have no idea I was struggling to remember my way home, or why I was in the high street in the first place, because it's just not apparent.

DH knows all of this, and luckily for me, loves to cook. So he does all of the cooking. When I feel able I will spring into action, but with 2 small DC, most of my limited energy is spent on them.

Every day I need to have a LOT of rest. DH resents this, and is always keeping a log of how much rest I get, and demands an equal amount. But the amount I have is not normal, I need much more than everyone else because of this awful, incurable, disease that I can't escape from, and that will never improve.

He says he can see that I need more, but every time I ask for more, he makes it difficult (tuts, sighs, grimaces), and begins to resent it if I don't offer the same to him.

The trouble is on a day like today. We take it in turns to have a lie-in while the other person does the school run. Today it took everything I have to make it to school and back, and I had to skip having a wash to be able to conserve the energy for this. DH didn't want to lie-in but wanted to go to the allotments and garden instead.

For some reason that really annoys me. I am shattered, but he is insisting on having 50% lie-ins, but then doesn't always take them, but uses it as a chance to have the morning away, leaving me caring for DC alone. It feels a bit of a piss-take when I am struggling to be honest, yet I'm not sure I am being unreasonable. I suppose I feel like he's tricking me into getting himself a "much needed rest", but then refusing to actually use it for anything other than a lovely hobby. It feels a bit dog-in-the-manger and now I am the one feeling resentful.

I know he's entitled to have some time for fun and hobbies, but it just feels a bit underhand to pretend he needs the rest and then not take it, while I struggle so he can, and then find that he's escaping for half a day on the allotment instead. I'd love to have spare time to have a hobby, but I don't have the energy or physical ability as all of my "down time" has to be spent sleeping in order to survive the rest of the day.

He's inherently selfish, doesn't like taking DC to birthday parties and swimming lessons, etc, because it gets in the way of his own hobbies. I know that can be something people struggle with if they have children later in life, like we did, as it can be too easy to get set in your ways and live for yourself.

But in spite of that, I don't want to LTB. I just want to find a way to feel ok and practically deal with this so I can somehow survive it myself too.

Any thoughts?

[wonderingsoul]

I can see why it erks you, but I do think your being unfair,

hes still getting rest, just in a different way to you.

is it possable to hire a cleaner? something to take the heat of dh?
im not excusing how he sighs and what not but It must be hard, no matter how willing you are, to do near every thing.

have you talked about how you feel, and vice verser?

[warysara]

It is very hard on you and him. He probably didn't quite realise what he was signing himself up for and goes through periods of resentment.

The 'keeping a log' thing is a bit weird. Did he always do this? If it is relatively recent I would say he is at the end of being able to cope and look after you and his children and work? Does he work?

Have you discussed how you feel? More to the point has he discussed how he feels and whether he is going to continue to cope?

[Tired2015]

I appreciate your honesty with telling me I am probably being unfair. I wasn't sure because I do realise he needs down time, I think I said that in my op.

He doesn't do any housework, only cooking. I do everything child related. I now hire someone to hoover and mop once a week, and clean the bathroom, but everything else like washing, drying, bed changing, cleaning away after meals etc, I do.

I haven't talked to him about this today because I wasn't sure if I was being fair or not.

[TheStoic]

Firstly, he is entitled to spend his spare time however he likes (within reason, of course - gardening, yes. Strip clubs, maybe not so much). You should not expect him to spend his time resting at home just because that's how YOU need to spend your time.

But his attitude stinks and must make for a miserable atmosphere. I'm not sure how you get that to change, to be honest. It needs to come from him. I think some third-party counselling could be really beneficial, so you can both get your resentments out on to the table in a safe environment.

[Tired2015]

He does work, but does long days so get half the week off.

I think neither of us realised how much hard work having children would be! I also stupidly hoped to improve much more than I have done

He's been like this for a few years, since around the time we found I was pregnant with number 2.

I agree he possibly is coming to the end of his rope, but whenever I have tried to discuss ways we can get outside help, he gets mad and says we should be able to cope.

[Tired2015]

I suppose my resentment is because I am made to feel guilty for needing so much rest.

He then pretends he needs as much rest but then uses it to play.

I wouldn't mind as much if he said he doesn't need it to rest but to wind down. But he made his demands as though he had the same need for REST.

If a partner is bedbound for a week, is it right that the partner wants a weeks worth of play in return to make up for it?

The log he keeps isn't a document but a constant balancing of the scales. You sat down while I cooked dinner so I will not help with bath time etc, forgetting he was playing while I was hanging out washing etc.

[TheStoic]

If a partner is bedbound for a week, is it right that the partner wants a weeks worth of play in return to make up for it?

Actually, yes. I personally would want a decent amount of time for myself if my partner had been bedbound for a week. In fact, I'd be pretty desperate for it by then.

You sat down while I cooked dinner so I will not help with bath time etc

That, on the other hand, is completely unreasonable. It's the behaviour of either a complete dick, or someone at the end of his rope. Only you know which he is.

[Tired2015]

I'm surprised you say you'd want that because I wouldn't dream of looking for it in return. I sat by my child's hospital bed for 10 days and didn't expect anything in return. I looked after DH for 2 weeks when he was ill and didn't expect anything in return, it's just what you do, I thought.

[FredaMayor]

Do you have contact with any of the support charities for your specific condition? For instance the national charities for Parkinson's syndrome, Multiple Sclerosis and dementia all have websites giving information and also guidance on such topics as family relationships and carer stress.

National policy is to try to keep people living in the community if at all possible because of costs, and in theory this benefits you in terms of an increase in the level of support from health services in your area. The extent to which you are able to take advantage of it is another matter, depending on your health authority's current budgetary provision of community care.

If your DH is your sole carer then he may be finding the demands of it more that he can cope with on his own, especially if he has no prior experience.
You both should be entitled to support from the type of organisations I have mentioned. PM me if you wish and I will try to point you in the right direction as to where you might find help.

[Twinklestein]

Given that he has a wife with a life-limiting disease, he's not actually doing that much.

I'm guessing you may have MS? Or something similar.

I could understand if he got compassion fatigue because he was doing all the housework and childcare on top of a FT job. But he's not. Your illness doesn't actually impact his life that much.

The demanding the same amount of rest as you when he doesn't need it is bizarre. For you to struggle to get the children to school while he buggers off to the allotment is just selfish.

He needs to stop thinking of the time you have to spend in bed as 'rest' and think of it instead as 'illness'.

Initially I thought it was big of him to marry someone who was ill, but actually it sounds like he didn't have the remotest idea of how it would impact you, and either still doesn't, or doesn't care.

[Twinklestein]

I suppose my resentment is because I am made to feel guilty for needing so much rest.

He then pretends he needs as much rest but then uses it to play.

I wouldn't mind as much if he said he doesn't need it to rest but to wind down. But he made his demands as though he had the same need for REST.

Xpost. This is the nub of it. It's a weird and selfish manipulation.

[TheStoic]

I'm surprised you say you'd want that because I wouldn't dream of looking for it in return. I sat by my child's hospital bed for 10 days and didn't expect anything in return. I looked after DH for 2 weeks when he was ill and didn't expect anything in return, it's just what you do, I thought.

I would do/have done those things too, but I definitely needed time to myself to regroup afterwards.

Have you considered that he might need time to himself for psychological/emotional reasons, that could be equally as valid as your physical ones? Is he a selfish person generally, or could he be genuinely struggling?

[petalsandstars]

Imo he sounds very selfish

[Twinklestein]

I looked after DH for 2 weeks when he was ill and didn't expect anything in return, it's just what you do, I thought.

That's what you do if you're not selfish. But he is unfortunately.

You need a cleaner twice a week, and she needs to be doing the laundry and changing the beds as well, to help you save energy.

[pocketsaviour]

I definitely disagree with Stoic - if your partner is ill (and especially when you know that they have a lifelong condition) then you look after them as best you can. You don't then demand a holiday of equal length once they are recovered enough to get out of bed again. How can you? You're a team, and you have responsibilities, i.e. two DCs.

OP, have your care needs increased since you married? I'm assuming that as you said the disease is progressive, and adding to small DC to the mix, you are becoming less able than you were.

Your H married you knowing that you had this disease and it wasn't going to get better; however he may have not realised the full scope and impact of what that really meant, especially when you became parents.

whenever I have tried to discuss ways we can get outside help, he gets mad and says we should be able to cope.

"we should be able to cope" and "we want to be able to cope" sadly do not equal "we CAN cope."

I hope you can find some way of getting him to see that you need extra help, because feeing guilty and like a burden because of your illness is really the last thing you need.

[Twinklestein]

Not so Stoic then... despite the name...

[TheStoic]

I can see both sides here, is all. If he's struggling, he might need some help - which will benefit the OP too.

[Tired2015]

Freda, I would gladly pm you but DH refuses to allow others to help, as I mentioned earlier. He gets cross and says we should manage. I had to fight tooth and nail to get a little help for child care during the 14 hours he's out of the house. All of my benefit goes on it.

Twinkle, I appreciate your insight. He's not doing all that much extra and some would say he doesn't even pull his weight around the house, so does less than your average partner!
I suppose I feel a bit guilty about getting resentful because I do know that everyone needs SOME time off, and I of course wouldn't want to deny him that in his life.

No amount of talking about it changes anything.

[Twinklestein]

It sounds to me like the OP is the one doing all the coping.

DH has half the week off work, he takes the children to school every other day, he does all the cooking but he doesn't do housework, and doesn't like taking the children to activities because it gets in the way of his own hobbies.

He's not doing that much for a man with a sick wife.

[Tired2015]

Pocket, thanks for the understanding too. You're right, the guilt laid on me is something I could do without, I have enough of my own to deal with!
I suppose my care needs for rest have increased simply because of the physical demands placed on me with having 2 small DC.

[shattered77]

I feel really sorry for you, and totally get where you're coming from. I think he needs a reality check. Can you get him to the gp with you, or to come to a hospital appointment, or have a meeting with a relevant charity, a knowledgeable counsellor? Because he needs to get it into his selfish head, what is actually going on with you. Yes, he needs time away too, but this 50/50 arrangement is ridiculous. He sounds quite immature.

In the immediate term I would see what outside help you can source/afford, and start with that. I'm a healthy sahp but still had to get a childminder two afternoons a week, and family help as I simply could not cope at the time.

He is totally missing the point. You actually have an illness and he needs educating ASAP. Perhaps it is all too much for him, but you need to talk honestly and formulate a plan. Good luck to you.

[Twinklestein]

Xpost, when he says 'we' should manage he means you.

He won't allow extra help, but he won't do more than he fancies, which puts a huge strain on you.

Your husband is doing less than many men with healthy wives.

[FredaMayor]

OP, ethically your DH doesn't get to decide on this, you do. No-one should stand in the way of your accessing the services you need, because if they were to do so that would be obstruction with the effect of causing you unnecessary hardship. As an example - if a health professional were to act in that way towards a client or patient it would contravene their professional code of conduct and be a serious disciplinary matter. Your DH has a duty of care to you as your husband, and preventing you from seeking support is failing in that duty.

[Hullygully]

He sounds v odd. He sounds like he is ignoring the reality of your condition and he sounds like a selfish arse.

[MerryMarigold]

Tired2015. I don't understand how it is a progressive disease but you thought it would get better. What is it?

I can understand a bit where you are coming from as I had ME/ CFS for a number of years and it was very difficult. Somedays I could hardly do anything. The house was a tip. Dh was resentful, and I was resentful of him too. It combined with depression too, so I was tired/ foggy/ worse some days than other.

I am a lot better (I had some fantastic treatment) but I still go to bed very early, which I resent a lot as it basically means I have little 'free time' as I am in bed at 8.30 and he stays up till midnight doing whatever. But that's life. He does a lot, he works hard, he does all the washing up and I am a SAHM so I do get some free time in the daytime.

It will be easier when the kids are at school. Just don't have anymore if I were you!