To be devastated at DH's comment?

[regthetabbycat]

I'm a stroke survivor and also have severe osteoarthritis which impacts massively on my independence. I'm also diabetic.

My DH is my sole carer which is how he wants it.

I cope with toileting myself by day and use a commode at night which I manage alone but he needs to empty the bucket each morning.

He cooks most of the meals and serves them because I can't carry things. He also does the washing twice a week.

Yesterday I overheard him telling a mutual friend that he's exhausted and 'never gets a minute' to himself. I'm heartbroken by this.

I keep between meal requests to a minimum because after being active and independent this hasn't gone well with me and I'm quite frankly embarrassed at needing to be cared for! I try my best to combine requests so he gets longer breaks. Twice a week he meets a friend for coffee for an hour - which is a luxury I don't get. My outings are limited to hospital appointments because he would have push the wheelchair for other things and I don't like asking.

AIBU to be so upset at this.

@PatchyTwat

Wait. Sorry I’ve never been a carer but from reading:

• he watches you in the shower sometimes

-cooks 3 x meals a day (which cold bf and lunch isn’t really cooking

• presumably shops
• does washing did just the 2 of you
• helps you put your shoes on sometimes.

Am I missing something? That’s about 50% less work than most people do...

That's what I thought!

He sounds like the carer equivalent of the really hands on adorable Dad who does no more than an average unnoticed Mum would do.

Just a quick message, and didn't want to read and run.
If you haven't already had an OT assessment, it will probably be worth doing so, to see if there is anything else that can give you some more of your independence back. You should be entitled to attendance allowance. Also your husband can have a carers assessment and he should also contact other carers groups.

Does he know that you don't feel he needs to be with you all of the time? I just wonder if he worries about anything in particular and is scared to leave you or maybe he feels he needs permission to leave you and you need to remind him that you are an independent woman and whilst you have disabilities, you still have plenty of abilities :-)

Fucking hell, no wonder the Government gets away with paying carers £67 a week when there are people like @PatchyTwat and @Anotheruser02 around, who have no idea of the emotional and physical imapact of caring for a disabled person.

hHdes thread

That should be hides thread!

This is an awful situation for you both and for your marriage. If I were you I'd insist on having professional carers for my toileting and other personal care needs, so that you retain some dignity and your DH doesn't become burnt out. You need to be able to share some quality time and pleasure trips not that every contact he has with you is in the context of being your carer.

Some really good advice on here. I just wanted to add that my friends Dad has a mobility scooter and he has a little storage shed for it outside if indoor storage is an issue. His is steel and is not much bigger than the scooter itself so doesn't take up much room, but you can get different ones and different sizes eg if you want to be able to drive it in.

I’m in Scotland not sure where in the world you are but in Scotland yous be entitled to a set amount of free care a week from council you’d need to apply you gp could point you in right direction that would take a load of him and would make it easier for you because you wouldn’t feel bad (not that you should at all ) I’d be upset if that was me (big hugs too you )

@patchyTwat what an apt username. Did you choose it deliberately in order to reflect your views? Thought so.

OP

I don't want to go over what others have already said but IMO the thing about the commode is just wrong.

You suffer humiliation just so you don't have to switch the light on and disturb your husband?? There MUST be a better solution than that. Is he really such a light sleeper that a lamp would wake him up? Surely you wouldn't have to put the main light on for that?

I do understand being a carer is a hard shift - I do it one day a week for a family member (duties are shared between siblings as we all work full time and have families) and I know I definitely couldn't do it full time.

But I find it distressing and kind of worrying that your dignity means so little to him

What was your relationship like before you became ill?

And I see that @ PatchyTwat is an antivaxxer into the bargain… mmm.

I think posters need to remember just because the dh is ops carer now doesn't mean this is a healthy relationship

Yes. From the outset I thought there’s more to this.

Erm no I’m not @AlternativePerspective I’ve had my vaccine and have the second on Sunday

This forum is ridiculous, I asked if that’s “all” he did from OPs posts it sounds like she try’s to ask as little as possible, he makes her use a commode to accommodate him and he takes her no where as she doesn’t like to ask.

So inform me, when I ask a question. But then I guess that’s harder than piling on

I haven't rtft so apologies if it's already been mentioned.
You can apply for an NHS carers assessment for your DH which will give you both access to respite services.
There are charities that offer respite breaks too where you both get a short holiday.
Scope usually has some good information.
Most of all though, make sure you both have a real life outlet for your feelings and stress, be that counselling, mindfulness, or even just a friendly listening ear.

Has it not occurred to anyone that the other reason he might want her to have a commode is because if he is asleep she might fall on the way to/in/on the way back from the bathroom? Maybe not so much selfish as worried? & op mentioned (to those who haven't figured it out) that he has agreed help with housework - which presumable means that he has been doing that?
Please remember op has had stroke & has osteoarthritis & getting up at night when you are not very stable (note what op said about showers) could lead to a fall.
he may not have said that to you op but I suspect that might be the main reason.

Needing care is really hard. Being a carer is really hard. Both are physically and emotionally exhausting. You need to get some respite.

Pardon me if someone else has already asked this, OP (I've read all of your comments but not the whole thread), but precisely how much caring is your husband actually doing for you here? I appreciate he must have had to take on a larger share of the household chores but how much housework is really needed (I'm assuming there are just you two in the house)? Laundry twice a week doesn't sound like very much (we do at least one load a day!) and he'd have to cook meals for himself anyway, how much extra work is it to make enough for two?

Emptying a commode he insisted you get (That's also very weird, by the way, if you could get yourself to the toilet independently then his suggestion of a commode is not because of a medical need, or because he would have to get out of bed to physically help you to the toilet, it's because the light wakes him up? Did he suggest a commode before your stroke? Have you told him you find it humiliating? What does he do when he needs the toilet in the night? I very much hope the answer is not that he merrily takes himself off to the toilet turning the light on as he goes! If the light is the problem could you get a nightlight or leave a dim lamp on on the landing if that would give you enough light?)

So I'm confused as to how he feels like he's doing so much. I'm a SAHP to one preschooler and pregnant with a second, I do all meals and laundry of which thwrw is a huge amount (my husband does other tasks and we have a cleaner once a week) and I feel like I still get time to myself! It's very concerning that you don't go out at all and don't feel able to ask. Is he a bit of a martyr? Is he not concerned that you don't go out? Why can friends/family not come to see you at home (now that restrictions have eased)?

P.S. My father was a full time carer to my mother and also did some caring for his sister at the same time, so I'm not unfamiliar with what it looks like when someone really doesn't have a moment to themselves due to caring responsibilities. Mum had dementia so over time Dad genuinely WAS doing everything for her (helping with personal care, all housework, all admin etc.), and of course he progressively became unable to go out even for short periods of time because she couldn't be left alone (he had to give up his regular sporting weekends, then overnight visits to his brother in another part of the country, then his part time hobby job, then going out in the evenings for dinner or clubs or groups, then going out in the day for lunch or a class or a coffee or shopping and so on). At the same time he was helping his deaf sister out once a week with tasks she couldn't manage herself. We did what we could (we're not local) and encouraged him to outsource as much as possible (using attendance allowance to pay for it, and eventually having carers and respite care for Mum before she had to go into full time care) and helped him to apply for all those things but it doesn't sound like what your husband is doing is quite on that sort of scale.

It's good he's agreed on some extra help at home - now, when will you be going out and where to!?

mumwon exactly right. We got urine bottles as my husband needs supervised when mobiliing and therefore I dont get woken during the night. The commode again was incase he needed it during the night. He has fallen on his face a few times and needs to be supervised to walk. I appreciate folks might think its controlling to get a commode but it is a balance. My DH was at one stage expecting me to get up to clean him up in the event he had an accident during the night, I work full time as well as take kids to school. So I said no. Thankfully he makes the toilet for those. Wee bottles are used during the day and at night. It isnt nice , I dont cope well with the smell. I also boaked when he used the commode. So I couldnt hold that back. So the idea that a commode is controlling I disagree with. Until you have had to deal with emptying a commode filled with adult poo I would suggest you rethink your comments.

@mynameisbrian

mumwon exactly right. We got urine bottles as my husband needs supervised when mobiliing and therefore I dont get woken during the night. The commode again was incase he needed it during the night. He has fallen on his face a few times and needs to be supervised to walk. I appreciate folks might think its controlling to get a commode but it is a balance. My DH was at one stage expecting me to get up to clean him up in the event he had an accident during the night, I work full time as well as take kids to school. So I said no. Thankfully he makes the toilet for those. Wee bottles are used during the day and at night. It isnt nice , I dont cope well with the smell. I also boaked when he used the commode. So I couldnt hold that back. So the idea that a commode is controlling I disagree with. Until you have had to deal with emptying a commode filled with adult poo I would suggest you rethink your comments.

I never poo in the commode!

@FuckingFabulous

No, you're not being unreasonable to feel upset by that. Anyone would be. But (and I mean this in the most gentle way) it's incredibly hard to be a carer and you can feel very put upon, very overwhelmed and very much as if you lose yourself. I am a carer for my oldest child. I wasn't always but I am now. I love her more than I could ever possibly explain but I am exhausted by her needs and what they mean for me. I don't blame her for them. I don't resent her for them. I'm sad about the hand she was dealt and the experiences she has to endure, and I'm sad about my life going in a direction I never imagined it going. And yes, there are times that I absolutely need to offload that kind of feeling. If I feel like I am being dragged down with exhaustion or sadness, I have to get it out, otherwise I can't stay of top of it.

Your partner is very likely the same.

Dear F Fabulous.

Definitely would benefit from Occupational Therapy input. Not just for equipment but for actual rehab. Ask your gp to refer you to your local Neurological rehab team for OT and physio input to get you hopefully getting back to doing what you want to do again

A bit of projection going on on this thread... would be great if people would engage with what the OP has actually said!

Why have people decided they know the "real" reason why OP's husband wants her to have the commode when she explained his reasons on page one?

I’m sorry to hear about your health.

I was wondering if there is anything that you and/or DH could do to make things easier? Ordering medication to be delivered, Internet food shopping to be delivered, mobility gadgets, a cleaner, takeaway once a week?

Do you have anyone that could come around regularly and sit with you or take you out so that your DH can get a proper break without worrying if you are ok?

It’s difficult emotionally as well as physically I would guess for a carer who cares for their spouse. The dynamic of a husband/wife relationship must be very different to how the carer imagined it would be. It’s normal to have a bit of an offload on someone if you’re feeling drained. He obviously can’t offload onto you, as I sense you’re struggling to have much sympathy for his situation, so he has confided in a friend. I appreciate it must be hard for you to hear him express that, but he was just being honest about how he felt at the moment.

You are certainly not being unreasonable...this is hard to hear. However, and I say this as a stroke survivor who has needed a LOT of care recently, neither is he.

I would do two things.

Here in the USA, there are associations/groups that provide "Day Off" type help for carers. Explore that. Perhaps someone could come at least once a week to let him get away from it all.

The second is to explore your options for a motorized wheelchair with controls that you can manage yourself. You will have far more independence, and so will he!

Sorry you overheard that.

If he chooses not to have other carers he can't really moan because he's the sole carer, which is his choice.

Do you get PIP? I assume so, or you should definitely apply.

You could also be entitled to extra help/carers through the council; apply for that.

Get yourself an assistant who can take you out to do stuff sometimes, which you can pay for through the PIP or hopefully get council help.

Nag him to get other carers in @regthetabbycat . If it's his choice rather than yours to have no other help, then it's not quite fair of him to moan. xx