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.

[Graphista]

you can only get PIP past pension age if you were in receipt of it before reaching pension age I think?

Generally true, it's a little more complex as there are other avenues too very much depends on ops exact age, when they became disabled etc

[tallduckandhandsome]

Op, are you no eligible for PIP and pension credit? My mum gets these.

[Crazycrazylady]

Very hard on both of ye.. yanbu but I feel for him as well. I know that I would be a terrible carer to anyone and I'd happily work every hour to pay for a proper one for a loved one but I'd be so bad at doing it myself .
Awful situation for you both..💐

[Bluntness100]

Op can I ask politely please, how old are you both?

[Rebootheplanet]

When you say being your sole carer is how your DH wants it can you say why he wants it to be this way? Is it financial or about him being in control or not wanting other coming into the house?

It’s understandable he’s tired and has little free time but there is help he can get. It sounds very stressful that you feel you have to limit asking for anything over and above what is absolutely essential care from

[Graphista]

This is why it's best to get an independent and well qualified advisor to help with benefits/money side of things.

The rules are constantly changing too, I have friends and relatives who work for dwp and especially this past year they've struggled to keep up with new rules. Their workload is insane at the moment

[OccaChocca]

Oh no, poor you, that's pretty tough.

How much input have you had from occupational therapy? Might be worth getting a referral. Sometimes it just needs a fresh eye on things to suggest ways you could live a bit more independently. The situation is impacting you and your DH so I'd think it was really important that you see someone.

Do you get up to go to the loo every night? I would be inclined to find a solution to getting to the bathroom. It's a bit horrid using a commode (and having to empty it!). What about a plug in baby light? Bright enough to see if you need it but not enough to keep you awake.

Have you had any contact with the Stroke Association? They're amazingly supportive and run clubs and groups. I saw the comment about the day centre so it might not be what you want to do long term but it might give you a push to getting out and about/making friends.

[BasicallyBookish]

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.

[Lettuceforlunch]

As someone who has similar experience to your DH, can I ask what his expectations of retirement were? It sounds to me as though he was used to you doing everything ‘housewife’ and it’s this he resents/can’t cope with more than your needs at the moment. If this is true, he really needs to step up! My partner was younger when he suffered a catastrophic injury and it was HARD. Small kids in the mix too. But you cope and you adapt and it was never his life plan, just like it was never mine. Really how much work is there round the house for the two of you? Cooking is pretty much the same for one as it is for two. I think it’s harsh he’s saying he never gets a break and that there’s an element of him not realizing just how much you did before. That’s a distinct and separate issue from him needing to give you a little help due to the stroke. I wish you all the very best. You sound to be doing everything you can to be independent.

[endofthelinefinally]

We put in a downstairs walk in shower and fitted grab rails. I have a non slip mat. It has made a big difference. The only time I have needed help is when I have had fractured ribs/arms. Fortunately temporary. I will never get in a bath again, but the shower is great.
You might even be able to get some help making adaptations to your home.
I agree with everyone saying get a night light. You can get remote controlled ones, or socket lights at floor level. No way would I be able to cope with a commode. I would feel undignified.

[Passingahat]

There are some grants that you would be eligible for as a previous nurse

www.cavellnursestrust.org/

www.rcn.org.uk/get-help/member-support-services/lamplight/guide-to-financial-assistance

www.rcn.org.uk/get-help/member-support-services/lamplight/signposts-for-funding

[ClawedButler]

You can get a care assessment - that looks at what needs YOU have.

The carer's assessment is separate. That looks at what can be done to support your DH.

[ARealTrip]

Lovely, the commode is his idea so if he complains about it is on him. Why not look at getting an Alexa controlled lightbulb that at night can come on anywhere between 1 and 100% brightness or some of those battery powered motion lights that you can stick near floor level so you have enough light to get to the bathroom safely and it doesn’t disturb him.
Or just tell him that you are not using the commode anymore whilst you are capable of using the bathroom yourself and he’ll have to learn to live with the light.
Regarding the meals and laundry and that you used to do that for him, you’re still seeing it as wife work and not equal relationship.

Buy a second hand mobility scooter, you can get one for a few hundred quid and they come apart to store inside. Get your friends to take you out for coffee and push you wheelchair without him.

[WhoWants2Know]

I don't feel that it's ideal at all for a spouse to fully assume caring responsibilities. In my experience, it restricts the rehabilitation of the vulnerable person and deprives both people of their independence.

With a "reablement" worker, you could have space to do the things you love without having to ask your husband.

[Mrsmadevans]

Who does the cleaning in the house, the washing, the ironing, the drying, the putting the clothes away. Who changes the beds, who does the bedding laundry, who cleans the bathroom, the toilet, the commode, the kitchen , the windows , the hoovering, the dusting and polishing , washes the floors, the windows, weeding the garden , mowing the lawn , the car maintainance, the car washing , the shopping , who prepares the veg for the meals, who washes the dishes then dries them, then puts them away. Who takes you to the Drs appts, the hospital appts, the blood tests, the dentist , the xrays, who picks up your medication, who prepares it for you? Who does the shopping, drives to the shops, takes you with him possibly , which is no doubt an effort for him to get the wheelchair or aids out of the car and getting you in and out of the car. Taking you around the Bank/supermarket/shops. Taking you home , putting all the shopping away when you get home. Doing the recycling.
Who does all this OP ?

[Beautiful3]

I'm sorry op. I understand completely where he's coming from, it's hard work being a carer. I've done it for my mother, and now my father. If you can arrange some outside help then please take it, so he gets some resbite.

[spongedog]

This is a Carers Support service based in Croydon. It used to cover people from Kent, parts of Surrey and Croydon.

The link might be of use to you or other users.

www.carersinfo.org.uk/

[entropynow]

@Cynthese

I care for my husband, whilst running a business and having a full time job. I honestly think yabu. Your husband needs to vent to his friends without you feeling somewhat about it, Its not easy. I know you don't want to depend on anyone, but, hey, that's what it is at the moment.

And you think this is helpful to the OP how exactly?

[mam0918]

My DH says the same thing whenever he has to do anything for me or the kids, My dad moans the same way too about my mam.

Im sure its just a man thing not specifically you or your situation, men just love to feel sorry for themselves when faced with even basic care duties.

You dont need to feel bad about asking for help.

[Backhills]

I'm currently carer for my DH. He is also considerate and Tues not to be too demanding, but it us exhausting and restrictive and he understand that. It's not the life he would have chosen for me (nor me for him).

It doesn't mean I'm not pleased to do it out of love for him, but it is really hard. It's good that he has a friend he can express that to.

Could you talk to the friend and see if they can have a conversation around getting more help for you/DH?

[AbsentmindedWoman]

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

This makes me very uncomfortable.

With the aid of a small light, can you safely get to the loo?

The only reason him pushing the commode option upon you would be ok is if he's worried you will have a fall in the middle of the night on the way to the bathroom, when he's asleep.

He does meals and laundry. The things I used to do for him. Between times he's free to do as he pleases but chooses to be on his tablet instead of other activities. He could leave me with a packed lunch and go out for the day but chooses not to.

With this, I really do wonder if he's reluctant to leave you because he's worried. Which is very understandable, and as it's still a new situation for you both - he might relax more over time.

It's really hard to describe the kind of constant high alert mode you can get stuck in when you're trying to make sure your loved one is ok. There can be an awful constant fear that if you relax and take your eye off the ball for a second too long - bad stuff will happen.

to you OP, being disabled is really fucking hard.

[MaBroon21]

Op, I’m sorry you’re in this situation. Could you tell your husband you overheard him and that it’s time for an honest chat with each other.

I do wish you could get out more. 💐

[Ariela]

I help an elderly lady, and she struggled because the landing light switch isn't near her bedroom. So I have popped one of these on the front of her bedside cabinet , it's aimed so when she puts her feet on the floor the light goes on. She walks with a frame and 2 hands are best. This takes her to the landing where there is a second one, which points into the bathroom where the light is easily operated. On the way back just standing in the bathroom doorway turns the landing one back on after going to the loo, and standing in the bedroom doorway turns the cabinet light on, makes the trip easy peasy for her.

[Ariela]

sorry link is www.robertdyas.co.uk/osram-nightlux-hall-white