Do you care for your spouse, as a carer?

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I do now. My previously fit, strong, capable, muscular husband had a series of massive strokes after surgery in January. It is 14 weeks today.

He doesn't know how old he is. What day it is. He wakes up 25 times a night. He can't dress himself, wash himself, feed himself, take himself to the loo. He can't see anymore because he's been left with massive vision loss.

We get no help. I've had to give up work to care for him. I've never felt so alone. So selfish. I'm failing him every day. And I'm sinking.

I'm sure someone will come along with practical advice but I wanted to ask if you get any respite care? You should be able to get some provision for Health care. You are not alone but I do understand the bleak feeling. Support on here is good but do you have anybody in real life to help?

I'm so sorry.

This situation simply isn't tenable. You can't possibly continue being woken so many times a night.

You're not failing him. This simply isnt something that is beyond your capacity. And it would be beyond anyone's.

Do you have a disability social worker yet? Adult social care? At the very least, you need some respite care for him for a few weeks, while he is assessed properly. SS will let you do the impossible until you break, because it's easier for them. But you can't break, and you need to tell them now, that you are breaking.

My mum's stroke didn't leave her as badly affected as your DH, though she is paralysed down one side. There was never even a suggestion that she be cared for in a domestic home setting. She went from hospital to rehabilitation hospital to care home. She's now (as she has capacity) in an extra care flat with carers coming in throughout the day.

Talk to ASC. Talk to the Stroke Association. Call any relevant help line that you can.

I only cared for my husband (cancer) for a few months until he died at home. It was bearable because we had lots of support, and (sadly) I knew it was finite. My mum had her stroke 14 years ago. Nothing has changed. You simply can't be in this situation for the long run.

I am so very sorry, what a tragedy for both of you.

Don’t you have carers in to help at all? can you afford some respite?

This simply isnt something that is beyond your capacity

Sorry. This simply IS something that is beyond your capacity. Unfortunate typo.

Sorry to read what you are going through. You need to ask adult social care for an assesmsent so he can be assessed for a care package.

He has an adult social worker. We have had an assessment. The 'state' will fund 3 visits per day, 20 minutes per visit. To dress and shower him before 11am (which I have done by 8.30am latest). Help him with his lunch - pointless - he can't prepare it. And help him with a bedtime. So in total 60 minutes a day. The other 8 hours? Nobody cares.

Somebody from the stroke association came to see us 4 weeks ago and we haven't heard from her since. We haven't seen an NHS physiotherapist since he left hospital 6 weeks ago.

That all sound so super shit, I’m so sorry. It’s not what you want to hear but does he have the level of care needs that he might be better off in a nursing home with you visiting every day instead? This really isn’t manageable for anyone and you need his needs reassessing again to see if they’ll change the date package. It’s ok to leave him in bed until 11am and let them do it, you don’t need to have him ready before then. Heck I spend alot of my days still in my PJs at that time so it’s fine for him.

I do, but my situation is nothing like as awfully sad as yours.

My previously fit, strong, capable, muscular husband was diagnosed with cancer. He's had an op, and RT, but recovery is taking a long time and he's constantly in pain. He has lost all confidence, and a lot of weight and muscle tone.
The pain and just the mental load of having cancer means he can't concentrate on anything much - not even TV. He won't go out without me, and if I go out without him he forgets to eat and take his medicines. He hardly leaves my side these days.

Sometimes he's very with it. He talks about his past hobby, about our joint interests. Some days he doesn't know his name.

I'm angry.

Oh KnickerlessParsons I'm so sorry x

My partner was in a catastrophic fire in July last year. 60% level 4 Burns. Has had multiple skin grafts, scaring etc etc. Also suffers PTSD. He still attends Burns unit 2 a week. Has carers coming in 2 a day. He will never be same person he was. I haven't got much to advise but look after yourself. You need your time or you will end up going insane.

I just wanted to revisit this thread. I was too embarrassed before now.

He had a good day today. Managed to do some of his vision exercises and read 4 sentences. Did all of his physio exercising (the stuff we do at home when his physio isn't here) and mentioned some things about a brilliant holiday we had in 2019.

I feel utterly lost as to how to manage our days. We have literally no money and every day we sit at home doing absolutely nothing and it's killing both of us. I feel like he left hospital and that's it. Fend for yourselves. I could cope with a list, a plan, this is what you must do at 9am, 11am, etc.

The house is a tip. People want to come 'see' him but not one person says you sit down I'll chuck the hoover around, or you shoot out for some shopping and I'll sit with him. For the visitors it is enough that he is looking 'OK' and they walk away happy with that. For me, my husband, my future, our life, is gone and I've a child in the body of a 6 foot 1 man who thinks I'm 28 (I'm 42) and who thinks he is 38.

The despair is palpable. I know how people walk out and disappear.

Oh Olive, I've no words my love. That sounds horrific. How are you? How do you deal with it?

This is untenable for you. Being left to "just get on with it" is the unacceptable reality. I saw this happen with a family member who suffered a catastrophic stroke. His marriage broke down because it was too much for his wife to cope with.

In his case there were some local charities who offered certain services. One was a day centre where he could do art where there were other stroke and acquired brain injury people. He had disability payments and grants for taxis and so on.

Finding support for him took a lot of research and being a pain in the arse to get heard. That thing about the squeaky wheel getting the oil was very apparent. Having to push and push to be heard.

I just take it one day at a time. I love him and that will never change.

My previously fit, strong, capable, muscular husband has had Parkinson's Disease for ten years. Until recently we managed quite well but he had a crisis this February and has been in hospital for the last six weeks. We are coming up to discharge and I am in the process of

• organising some care at home
• referral to community team
• GP fully on board
• claiming PIP
• getting a blue badge

You must be entitled to some benefits at least which you could use for more carers, help cleaning the house, time for you to have a break. Given his condition, have you considered a care home? I know it sounds drastic and there is a lot of prejudice against them, but they can be very comfortable, well run and homely. It sounds like he would get state funding and it could help you both. If not yet, then maybe start to do some research. I'm very sorry, it sounds very tough 💐

Oh I'm so sorry to read this, it's heartbreaking. Somehow you need to draw on what reserves you have left and make yourself a pain the backside to these authorities about sorting out money (DLA?) and support for yourself. Where I live there is a disability information services charity, is there nothing like that where you are? The woman who came in 4 weeks ago you haven't heard back from - you need to get on to her and keep on until there is an outcome.

What have you got so far, have you got some equipment/adaptations to make life easier for you both? How are you feeding yourselves, do you need a food bank referral? I guess it's early days yet but how much recovery is he expected to make?

I'm so sorry this has happened to you

Just a suggestion, I have all the feels for you, could you set up a WhatsApp group with all your friends, and be honest. Say you're struggling. ASK if anyone can help out an hour or two a week. People don't always realise how hard it is.
It took me breaking down in tears at a friends house. I wish I'd just asked for help!
Xx

Thank you everyone that has responded, I genuinley appreciate it.

We are in the process of trying to get PIP. I sent the forms off 7 weeks ago. I rang today to chase it up. Was on hold for nearly 90 minutes to be told yes we have your forms, they are under review.

Bizarrely, the last couple of days it is like a light has been switched on in his brain. He's so much more aware. He's said a few phrases - stupid things that are "in jokes" between the two of us. He also put his own dressing gown on which was unthinkable 14 days ago.

I rang the stroke association again today and they are great, I'm not denying that, but it's very hard when he has 2 major issues conflicting and the available help doesn't work. This won't make sense unless you know, but all of the things he is meant to do to help him recover from the strokes rely on vision. All of the exercises he is told to do for his vision rely on him having coordination and not being stroke affected. There is no overlap!