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.

[mumwon]

because I am reading between the lines & because I have nursed elderly & disabled in wards, & my elderly relatives & my dm ? ie you know, experience? I have carefully read what she has said & explained why I wondered this - People are more likely to fall at night & he probably sleeps very lightly worrying about whether his wife might fall over when he isn't awake to check.
Some people on here have chosen to assume he is selfish & doesn't do much for the op - I don't think op feels that way at all but I do think her stroke has been a shock especially for someone who, as she said, has been the carer to becoming someone who is cared for - it takes time & its a kind of grief

[me4real]

We don't get any benefits apart from my pension! We can apply for attendance allowance once he's been caring for me for 6 months. Another 5 weeks away!

@regthetabbycat Ooh there's some more hope for you, hopefully it won't be all that long then. Once you get the attendance allowance, apply to the council for an assessment to see whether they might give you some extra help. Keep appealing that if they're crap.

Mobility scooter= you can get an efoldi, my friend just bought one. When not in use it can be folded up to the size of a suitcase. efoldi.com/

If he's only been doing this 5 months, you'll both still be adjusting to it and finding ways to make it work. It should get a bit easier as you both find things that work for you. The trick is to keep trying to improve the situation- don't give up and just accept that your current system is just the way it is. You will still be adjusting to the situation, too.

[Suzi888]

@Graphista oh I see, I can’t believe people have to wait six months for help.
The OP has had a stroke and osteoarthritis though, surely the latter hasn’t just materialised in six months- just a thought for the OP.


@mynameisbrian apply for the PIP and cancel it if he gets better then? Probably not that easy I know.

[LauEli]

@regthetabbycat can you tell me if social services are involved? Because if not that would be a good place to start, for both of you.
It sounds like you could both do with a break, your husbands role has changed massively and it seems like you've both lost sight of your marriage in turn for this carer/patient scenario. Which is tough for anyone.
It's sad that you overheard this conversation and both of your feelings are valid. I also wouldn't hide the fact your overhead him, bring it up, discuss it together and discuss your options.
Day rest bite, holiday rest bite or even daily care calls are all an option, I know you mentioned you have 5 weeks until you could be entitled to funding but get the social worker ball rolling now they might be able to offer a short term package or care or a reablement package which would take the stress off hubby.
Also, invest in a wheelchair or scooter, I look after people who have had a stroke and they manage well with electric scooters both around the home and outside (some even have 12 mile battery life)
It's sad to read your relationship has lost its way a little. But please talk to him, again, both your feelings are valid in this situation.

[Babyroobs]

@Mamamamasaurus

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

Op is pension age - she can't get PIP, only Attendance allowance and if Op's husband is pension age he won't get carers allowance because it overlaps with state retirement pension. They may get a carers addition if they are entitled to pension credit and op gets awarded Attendance allowance but that is all.

[Babyroobs]

@me4real

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

The most attendance allowance that op can be awarded is £89.60 a week and that would only be if she has care needs at night. There is no mobility component on Attendance allowance. £90 a week if awarded highest rate ) isn't going to go far to pay for carers, but agree they should get a carers assessment.

[me4real]

osteoarthritis though, surely the latter hasn’t just materialised in six months- just a thought for the OP.

@Suzi888 Some people don't want to apply for stuff until they really have to, also arthritis can slowly get worse. If the average person applied for PIP/AA when they'd just been diagnosed with arthritis, they wouldn't stand a chance. It has to be at a level of severity where it's quite disabling unfortunately, so there'dve probably been no point in OP applying for it when she first had symptoms (not that arthritis isn't awful from the get-go, but it's quite hard to get this help and a certain threshold has to be met.) Over 20% of people have arthritis, and a far higher percentage of people over 60. So they can't just give Attendance Allowance to everyone who's received a diagnosis of OA (like, over a quarter of everyone who's 60+ or something) things have to get pretty bad. OP hasn't necessarily failed to apply for something which she should've applied for before.

[Carriecakes80]

Being completely honest, when I was a kid, I was my Mums sole carer. I got her up, fed her, helped her to the toilet, fed her, got her out and about, fed her.....I adored her, loved her more than I ever loved anyone else, but when I did get ten minutes to myself, I would moan like no-ones business.
I would let everything out to my best friend, I would whinge, whine, bitch, probably sounded like I was the most hard done by teenager on this Earth, but in reality, I wouldn't have had it any other way.
Your husband does need to let off steam, theres no doubt he loves you, he wouldn't do the things he does if not, but he's human, and sometimes we need to let out the stress or it can drag us under.
xxx You got a good one there xxx

[Footloosefancyfree]

My dm is a carer for my terminally ill father and its hard for the last 4 years. She's actually depressed and her whole life has been restricted around my df. Have you considered respite to give your dh a break. My df goes to the Butterwick for a week.

[galaxyfairy]

I think he's being unreasonable if you could have had extra support and he turned it down because he wanted to do it all. I'm sorry, but you can't refuse respite and then have a moan. That's really unfair on you. I'm sorry OP.

[Anon9990]

Surely you would qualify for PIP? That’s non means tested and defo worth looking into x

[me4real]

@Anon9990 Attendance Allowance is similar to PIP but for people 60+, which means they can't claim PIP.

[Babyroobs]

[quote me4real]@Anon9990 Attendance Allowance is similar to PIP but for people 60+, which means they can't claim PIP.[/quote]
It's for people over state retirement age.

[MsRobinEllacott]

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

What's that about then, OP? Why is that his preference?

What do YOU want? Do you get a say in your own care?

[mumwon]

I can tell you why he wanted to do everything - he believes as they are married its what he should do (duty) & he loves op - but - reality is different & understanding the 24 hours of being on call & being worried about you & NOT like op, knowing exactly how much is entailed emotionally for both of you.-underestimated impact.
Many carers don't want help to begin with & are reluctant to ask for help even though it would be better for both of you.
Again, I have seen this happen.
It takes time to accept the situation & to find ways of adapting to changes.

[mumwon]

it takes time to accept that you (both) might need help from outside & that it will give both of you a better quality of life

[IAmAWomanNotACis]

these are for you because that can't have been nice to hear.

I hated feeling so vulnerable when I have needed being cared for, and I am a carer for my elderly parents so I have a little experience of both sides, as do you I think from your nursing experience.

I have been horribly emotional as a carer, probably just as you did in nursing you put on a smile for the person you are caring for and cry or let off steam behind closed doors. That doesn't make you any less of a good nurse and carer for your patients. You still overall cared greatly and primarily about them, didn't you, it's just that some days some things get to you, because carers are only squishy fallible humans too.

I think there are probably several charities in your area who can assist you in going for days out, provide respite care, and carer support to support you both. Have a google, ask social services, and ask around. I found a carer support group on facebook for example, and I've managed to get an occupational health care assessment for my parents and hopefully get some funded mobility aids. Anything that helps either or both of you.

[imscaredpleasehelp]

If you can't afford a carer could you possibly afford a cleaner to get some of the jobs down?
Would that be cheaper?