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.

How much care does your DH do for you OP? It sounds like he’s doing the household tasks and cooking which won’t be particularly onerous if there only two of you and he’d have to do similar if he was living by himself. Is he doing any personal care for you like helping you wash and dress, being disturbed from his sleep by getting up in the night to do things for you etc?

If not then I can understand you being upset by being made to feel like a burden.

Is there anyone, like a friend or relative who can take you out for a coffee or to the cinema?

The issue is that if I use the toilet, I have turn the light on and wake him

Honestly, I’d rather be woken by a light than have to empty and clean a wee bucket in the morning. I have to use the bathroom 2-3 times during the night (thanks kids), but even if I didn’t I’d much rather be briefly disturbed a few times than deal with the wee bucket in the morning no matter if it’s my DH’s, my kids, my parents etc.

I understand it would have been upsetting to hear that but you don’t seem to appreciate how difficult it is for a sole carer either. He probably needs more time away.

I'm a retired nurse - I'm meant to be the one giving care not on the receiving end. and I know it's irrational but I feel a failure

You're not a failure. Poor health is outwith your control

Sounds really tough for you and your DH. I think some respite care might be good for both of you

YANBU to be upset but I can understand why he needed to vent to his friend too. You weren't meant to hear it - he would never say that to you, would he?

Have you looked into a motorised wheelchair, or a mobility scooter if you can manage one? That might give you more independence to get around, and you could potentially go out without your husband, give him a bit more respite? Or would that not be possible?

I think, if he's genuinely needing more of a break, then he needs to stop martyring himself in being your sole carer, and realise that he needs some assistance sometimes!

OP, why don't you get a night light so you can go for a wee at night and therefore your DH doesn't have to empty your commode every morning? When DH has to help me with toileting it feels humiliating and isnt nice for him.

i think you need to have a proper talk about how to manage your care going forward. Its unrealistic and unsustainable for him to be your sole carer. Its awkward for you, and its too much for him. Its changed the dynamics and I think he needs to know that youll be ok with someone else helping and that hes not letting you down, and you need to give yourself a break, as this isnt your fault.
A different carer might be able to do more things with you. Take you out etc, which seems to be the bits your husband isnt prioritising, but is so important for quality of life

What do you mean "how he wants it"? You sound trapped! He does too but there's really no need.

What other support has been investigated/is available, has this been reviewed recently?

We don't get any benefits apart from my pension!

Who have you spoken with about this?

I am disabled I get Esa, pip (enhanced both) and housing benefit and council tax benefit.

I'm not sure exactly how it works at pensionable age/stage but at the very least take a look at the calculators here

benefits-calculator-2.turn2us.org.uk

www.entitledto.co.uk/benefits-calculator/Intro/Home?cid=23183181-6750-44f0-8848-2a0ae7d411ad

And I always use my local council welfare rights advice dept to complete and submit claims and they keep me up to date on changes. I would strongly advise NOT to attempt to complete applications for claims yourself they're complex and very tricky (designed to be). Also don't be put off if initial claim denied - that happens a LOT

Do not depend on the dwp giving correct or accurate advice that's not their role sadly these days

You should not only ever get out for medical appointments and he needs respite too.

Have you spoken with adult social care dept?

There's a lot could be improved here

There are stroke and diabetic charities too and they can advise on lots of different aspects of dealing with these conditions from the conditions themselves to finances to care...

Get advice, get help it is out there but you have to know what to ask for and ask for it

From a quick dummy calculation myself it seems you should at least be getting pension credit, council tax reduction and possibly housing benefit

You say YOUR pension has he no income? He's clearly not working for obvious reasons

Have you savings? Are you owning or renting ?

I understand the "feeling a failure" etc too - also an ex nurse, I'm only 48 my disability came about as a result of a car accident in my early 30's it's taken me a long time to BEGIN to accept it and accept I need to use aids etc

There's a lot to unravel here for both of you, it's a massive change to you each and to your relationship and you need help to work through that

It's a huge mental shift from able to disabled, there's also a grieving process takes place for the person you once were it's tough on both of you.

Please please contact your gp, social care, charities, welfare advice and get the help and support you both need

"The Selfish Pigs Guide to Caring" by Hugh Mariott is quite old but still relevant book that examines the emotions around caring. No one is a saint and it good to accept this.

You might also examine how you might both broaden your lives. Is there a friend or a volunteer who might push your wheelchair and take you out for a coffee. Different company and a change of scene could make all the difference. (My mother had dementia, and was quite depressed. Employing someone to take her out to the park once a week made all the difference, even though she seemingly had no memory of these outings.) You may well find that people are only too willing to help if given a specific request.

The same will apply to your DH. Or perhaps joint activities: a course in cinema history or other online activity? Make more effort to have friends around for a drink/takeaway?

Please PLEASE apply for PIP, it will open up avenues whereby you can afford carers, outsourcing your washing etc

@CharlieSocial

OP, why don't you get a night light so you can go for a wee at night and therefore your DH doesn't have to empty your commode every morning? When DH has to help me with toileting it feels humiliating and isnt nice for him.

I was just about to suggest a battery operated book light with a clip to attach to your PJs so you’re hands free. You don’t need much to be able to see at night.

OP you are not a failure. You know what you would say to one of your patients.

Neither of you ABU. It’s shit and I want to give you both a cuddle

You need more help - both of you xx

I have sympathy for you both, am disabled so understand its very difficult but there will be ways to make things better and easier for you both.

Re night time if you are physically able to get to the loo & it is just the light issue I use these rechargeable lights in my bedroom, bathroom and a plug in one in the hallway which lights the floor. The rechargeable ones are not too bright to disturb & detect movement. www.amazon.co.uk/gp/aw/d/B07MHWQYCY?psc=1&ref=ppx_pop_mob_b_asin_title&tag=mumsnetforu03-21

Re getting out I totally understand, I have bought a mobility scooter (reasonably robust one not a boot scooter), yes I personally still need someone with me but it means you can go further. Worth considering if u are able to use one or powered chairs.

Lots of people have made good suggestions and I hope you get attendance allowance. Get in some help if you can, take the pressure off a bit even a cleaner/laundry person would be a great start.

I know its ahed but things will get easier .

OP there is more to this, I sense?

I was just about to suggest a battery operated book light with a clip to attach to your PJs so you’re hands free. You don’t need much to be able to see at night

I have plug in sensor ones that go off as I make my way to the loo. They are commonly sold. If I or someone else has unplugged one (using vacuum or whatnot) and forgot to replace it so it doesn’t go off I then turn the lights on via power point as I go. I figure if that disturbs DH or the kids it probably disturbs them a lot less than me having to turn even more lights on to do a proper mop up job of piss on the floor.

I can imagine it’s really hard for him.

But I can also imagine that you already feel you’ve reduced his burden as much as you possibly can, but yet he’s still moaning!

It doesn’t sound like he does more than many/most wives do. With the exception of emptying the commode.

So he cooks every day. Laundry 2x week. Coffee with friends 2x week. (Who does the cleaning? Food shopping? Other shopping?)

How does he spend the rest of his time?

I can understand this is hard for you, but it is for him too, he doesn't have your restrictions and is living a severely restricted life. Not easy on anyone.

I mean, I do all of that and more but I don’t moan to DH.

Do you think he resents it?

Why does he want to be the carer?

@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.

I agree with the above.

Both of you have had your lives shattered by this stroke - and at a time where you should perhaps have been able to enjoy yourselves and indulge yourselves a bit more, you have found your lives limited instead. And of curse, the pandemic has limited them even more.

YANBU to be upset - but please try to put it into context. With the greatest of respect, I'm sure you get frustrated by your own limitations - of course he will too. It doesn't mean that he doesn't care deeply for you.

My heart goes out to both of you, it must be so tough for you in different ways. Have you spoken to him? Perhaps say you overheard him and you’re worried about him. That now is the time to talk about getting professional help.

I haven't read the whole thread but I work as a carer and am also disabled although not to the same extent.
Have you looked at respite care? Or going to a day centre one day a week? This can massivly help bot of you as you get to see other people in your position and some time out with zero judgement and your husband can have a day off or if you opt for respite a week off.
With the requests it's hard I know but what we do for all our service users and on my really bad days we set up by your chair bed etc is everything you will want for the next few hours, so books tablet, drinks, phone, lip balm etc so the requests on him.are minimal so he may feel that he has more space.
Have you looked at possibly a cleaner or laundry service?
Also.i would get applying for any and all help.out there. Possibly get adult social services out to asses even if you only get 1 visit a day it can have a massive impact.

This doesn't sound like much of a retirement for either of you. You both need time to yourselves to stay sane. Would you be able to attend any hobby groups alone if you had a mobility scooter/electric wheelchair? Only going out for hospital appointments sounds joyless. I have been a ft carer for my own DD (22 years until we lost her) and pt carer for elderly mother. My DH works with adults with a range of physical disabilities and the focus is very much on what they can do - not what they can't. He works for a charity which also provides activities for carers so they have a chance to offload (I feel sure some of them make comments like your DH to each other) whilst enjoying themselves.
Whether it's employing carers to get you out of the house separately from your DH or you both joining groups of interest you need to do something to relieve the stresses of caring and being cared for.

Neither of you are being unreasonable. Neither of you asked for this to happen to you but he does need to have the opportunity to speak to people for support and it’s good that he’s doing so, even if he’d have been better have have made sure you were out of ear shot.

@ThatOtherPoster

I can imagine it’s really hard for him.

But I can also imagine that you already feel you’ve reduced his burden as much as you possibly can, but yet he’s still moaning!

It doesn’t sound like he does more than many/most wives do. With the exception of emptying the commode.

So he cooks every day. Laundry 2x week. Coffee with friends 2x week. (Who does the cleaning? Food shopping? Other shopping?)

How does he spend the rest of his time?

I think you are being a bit unfair there. Even if a carer does not need to provide much in the way of personal care, being a carer is not just about carrying out those everyday household tasks. There are also issues like simply needing to be there in case the person has a fall for example.

OP YANBU to be upset. But as others have said, neither is your DH. The situation is very hard on both of you. I am in a similar situation, but I am the carer. I would hate to think that my DH didn't go out because he did not want to ask me to push the chair or worry about asking me to make a snack or whatever. Does your DH show reluctance to do these things? As a pp asked is there something else going on here? Why are things the way he wants them?

Of course youre not being unreasonable, but neither is your husband. Being a carer to someone, even when you want to be, is, incredibly demanding, tiring, soul destrying at times.

Neither of you have asked for this to happen, you have ny upmost sympathy as a carer myself ti my DP who feels an incredible amount of guilt for sonething completely out of his control. Its tough on you both.

I think and I clearly don’t know, but I think if you’re still adjusting to your new reality it can be very hard to have enough mental space to understand the person who has become your carer also has had their reality changed and they also need support.

No of course it is not as hard for them, but it isn’t a competition, and ones needs do not negate the others,

From your posts I read that you’re still struggling to come to terms with your new situation, maybe deep down you don’t want strangers caring for you, and prefer him doing it and he knows it.

The fact he is struggling doesn’t mean he doesn’t love you or care for you, the opposite he is there doing that due to nothing more than love and compassion, but as hard as it is, support needs to be a two way thing for you both to be as comfortable as possible going forward.

Personally I’d not say I over heard him, I’d simoly tell him you e given it some thought and now wish to look for secondary carers, as he deserves support too, and want this to work for you both.