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.

[RightYesButNo]

@JediGnot

I have to say that these threads get me every time!

I cannot for one second believe that ANYONE has voted YABU.

OP is 100% not being at all unreasonable. I don't think her partner is either, for the record.

I think perhaps people are voting that she is unreasonable for feeling devastated, because I’m sure her husband didn’t say it meaning to hurt her at all, and would probably even be upset she overheard and felt that way. I personally feel you’re not unreasonable for feeling how you feel at first blush when something happens, though feelings can change once you give something thought.

It is also possible that people have voted OP is being unreasonable because, as a PP said, it almost seems she’s punishing herself for being sick. Not going anywhere because he’d have to push the wheelchair? Not asking for things (even if you need them?) during breaks between meals? I mean, even using a commode because the bathroom light wakes him up. There MUST be a solution for that. Perhaps a nightlight could guide you into the bathroom, where you could then close the door and turn on the light. If the switch is outside the bathroom, put a lamp with a pull switch inside the bathroom, maybe.

I hope that, as it’s only been six months, perhaps you will still maybe be able to have some physio or regain some more movement. But if your current range of motion is permanent, OP, you CANNOT punish yourself for being ill. Being ill already is the “punishment” (not for anything you did wrong, just in terms of a bad thing happening). You are now allowed to do everything you possibly can to make it that bit brighter and more enjoyable, not give up the rest of your life.

[Graphista]

He doesn’t need to have been caring for you for six months, you need to have needed care for six months. If it’s more than six months since you had the stroke, say you were in hospital for a few weeks, you can apply now.

Well spotted I missed that - sorry op

[mumwon]

op I haven't read through everybody comments (I have read your though)
Does your dh drive? If he does (it sounds like he doesn't) than you can go out - & is your wheelchair collapsible?
If no to the first but yes to the second their are taxis which can take you both to places like the library or a coffee shop or even the cinema - you can check on line (& I would suggest your local carers facebook or phone number to see what possible accessible outing you BOTH might go to. There may be local volunteer driver operating nearby & the information for this could be in your local gp surgery (yep I know who can get in their these days!) The library also has a lot of local info too. get your dh to look support on line.
Do you have any interests (music or books or theatre etc) at the moment (thanks covid) a lot of social groups are not meeting but, eventually, organisations like U3A maybe the answer for both of you. Check yourself op to see if there is one locally & see if there is anything either of you might be interested in (book groups, play reading would hopefully be a possibility & some things can be done on zoom! no transport necessary.)
Carers support groups are not just about helping the carer but about supporting the person they care for & social support is definitely part of that.
The other thing you mentioned is the bathroom - it sounds like you don't have as much adaption in the bathroom as you could? Have you had an occupational therapist visit you? I am not sure exactly how this works (the carers or someone on here would be able to tell you this)

[Nydj]

I’m sorry because I haven’t read the thread and this may already have been suggested. Would it help if the commode had an opened out incontinence pad in it to soften the noise when you need to use it, absorb some of the odour and make it a little less messy to empty?

[mumwon]

honestly ! everybody's & there not their

[mynameisbrian]

To be honest i havent RTFT as it hit a nerve. I am exhausted as I am my DH carer, its been horrendous for 2 yrs after his diagnosis. We are not old and still have kids in school. I have to deal with emptying his urine bottles, commodes when he was using them. It isnt how i saw myself ending up. We are no longer a couple , we dont kiss , have sex ...nothing. Its all about him and his appointments, when we see his friends and family its all about him. It is exhausting and as much as he like you feels he isnt being difficult I have to do lots, Medication, fluids, his night feed via his rig, making sure he is having enough fluids, etc etc. He doesnt offer anything, does nothing with his DC, so its hard all round. I now have to also drive him to his appointments as he cant walk far. We were meant to complete a PIP but he decided not to as he thinks he will get better. It is frustrating...so you may feel upset at what he said but its hard

[mynameisbrian]

Having read your updates I do think your being unreasonable. You criticise your DH for not leaving you at home all day with a packed lunch. Why would he? He would be worried you may fall when he is away or feel guilty for going out. This notion that your not a burden and he can go off and do what he wants is naive at best. When I go out with friends I am always anxious and worried

[Anotheruser02]

The commode was HIS idea. I find it humiliating but went along with what he preferred.

Your dignity should be paramount, this doesn't sound right.

He is doing for you what you used to do for him and when it was you, you were working too?

He cares out of choice, doesn't need to take you to the toilet, wash you or dress you and requests that you loose more independence by taking away your dignity at night time. He does not do much more than the stay at home person would, with just the added job of being present when you shower and helping with your shoes? Then he doesn't have to go to work around it? Then he tells your friends that it tires him?

Yeah I'd be pretty fucked off and humiliated, I'd feel like he's making me more dependent for hero status.

[lilyofthewasteland]

The commode was HIS idea. I find it humiliating but went along with what he preferred.

Why? Are you scared of him? What happens when you say no or assert your needs?

[JustLyra]

Quite frankly, the day centre suggestion would be my idea of hell!

Can I kindly suggest you look into a few different options

When my friend was terminally ill it was her idea of hell too and she and her husband resisted it until he was almost broken from exhaustion. She went to one and hated it, but then she went to a different one (obviously different places have different options, but the one she went to was a day care place in a hospice) and loved it.

They had a massive list of activities, the people were all cheery and a laugh, they had home cooked meals for lunch and dinner and she made some amazing friends there. We were all very surprised by how much fun it was (and tbh if I hadn't been invited to join her for certain events a couple of times I would have been convinced she was pretending for her husband's sake).

[thatsnotgoingtowork2]

mynameisbrian I think you should start your own thread as that sounds awful for you but, having been in the op's position myself, your comments could really hurt.

[thatsnotgoingtowork2]

There will be a community transport scheme that you can book to take you to wherever you need to go - shopping etc. I really think you need an electric wheelchair that could be prescribed for you by an OT through your GP. There is more freedom out there for you than this xx

[lilyofthewasteland]

And what about things like a care alarm so you don't have to be afraid of being helpless if you fall? Most of them just require a landline and then charge a very small fee per month. There are ones like a wristwatch and ones that monitor specifically for falls or stumbles.

Do you have grabrails in the shower? Or a shower/bath seat? The NRS healthcare website has lots of options and they start at low prices. I think Argos sells some of the more basic kit too. You won't have to pay the VAT as you're disabled (which is easier if you buy from specialist suppliers like NRS that are set up to deal with it, but I'm sure there are others - NRS is just one I'm familiar with).

There are so many small things that could be done to give you more independence back. There are little gadgets that can help you with dressing/undressing, buttons, putting socks on, etc etc.

As your carer he should be supporting your independence not taking it away and controlling your life.

Him forcing you to use a commode when you don't need to is distressing to read tbh.

[Moomala]

Good luck op I have no advice but I feel for you both. I hope you find something that works for you both better

[Tal45]

Can you just talk to him about it? Tell him what you over heard and that you were upset/worried by it and would like it if you could talk about how you are both feeling?

[Nicolastuffedone]

Maybe 6 months ago he thought he could do it all, but the reality is very different

[thestaffy]

I was also a sole carer. My mother had dementia. My GP. pointed out however, that if I "cracked" it was game over. I got some outside care (got her up, toileted, and dressed) which helped mum, but it also really helped me immensely by taking the pressure off me in the mornings. As others have said, it seems that he IS struggling, but like me won't admit it, until it got really difficult, as he would seem to have failed in his eyes. You need help, and sadly the biggest difficulty will be both of you admitting "We can't cope"

[Itllbeaninterestingchristmas]

Ive only read the OP's post but are you eligible for PIP, its payable beyond retirement?
www.travelscoot.com
these light weight scooters are light and easy to fold but they don't have a lock so leaving them outside a shop isn't an option.
Could you do some volunteering at a day centre or similar? My granny used to make the teas at the derby and joan when she was in her 80's!
Try you local Age UK, Social services, CAB and carers advice centre. In our area there are dementia cafes who are always looking for volunteers to chat to people. They are usually held in accessible locations

[LtdEdition]

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.

@regthetabbycat I could have written your post. It’s not irrational at all. I was diagnosed with MND last year and have been slowly but progressively declining. Covid restrictions have made getting out and doing things quite difficult, and now I’m past being able to get out alone.

The thing that I am having the hardest time accepting is that my role has changed. I was the mum. I was the family organizer. I put on lovely dinner parties. I took care of everyone else! And now I’m reduced to a barely mobile lump that can’t seem to do anything I want to do.

I know my husband doesn’t resent caring, yet, but he only has to do this for a couple of years at most before I am gone.

Be gentle with yourself. Since you aren’t in the caring role anymore, you need to figure out what you can be now.

[tommyhoundmum]

I think it would be a really good idea to have someone in one day a week.
They could also take you out to the shops or a cafe.

[PearlclutchersInc]

@ltdedition I'm so sorry to hear of your diagnosis.

[Brazilianut]

I don’t think this would work long term as you may begin to resent each other. Even if he says he wants to do this, he should only do it part time at most.

It’s incredibly hard for you. And hard for him as he probably feels guilty when he does normal things like meeting a friend for coffee.

A compromise will be needed soon.

[Kacha30]

I can understand your upset but your partner probably is exhausted from it. Doesn't mean he doesn't want to it but he's only human. He probably is exhausted!

I'm a carer of 2 children with sen. Not the same scenario but I often feel exhausted and don't have anytime to myself.

His thoughts are valid. It isn't a reflection on you, doesn't mean he doesn't want to, he's not blaming you but he's probably feeling a little overwhelmed which is totally valid.

[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...

[youshouldbeplotting]

@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...

Please @PatchyTwat if you have never been a carer don't say things like this. You have no idea how caring goes far beyond just the practical stuff that can be clearly demonstrated to others. I honestly hope you never have to find out.