Donna, The Stroke Association will also send someone out to advise on benefits and they will fight your corner if you are refused and have to challenge any decision.
Pleased to have been of some use!! If you need further laughter, and you're not too freaked out by toilet humour, google Bristol Stool Chart (images) you will find enough material (!!) to keep you sniggering all week. Very base humour, it's what I've been reduced to these days ??
the financial aspect is really tough. if he's self employed that makes it harder. there are a few guys on this chat who had their own business. maybe pput out a specific call about that and see what comes back. you could also apply for the PIP if you haven't already. Personal Independence Payment. it is an online application but not difficult. well I had to get someone to do it for me. he will probably say weird things. I t is agony to go through, but hang in there. more than anything he needs your love. his world just got shattered and he won't be able to make sense of it for quite a while. he may not be able to process things like he did and will seem different. he won't know what is going on and is likely to be angry and lash out unpredictably. I did this and still get myself in awkward places with my family when things I say just misfire and I don't know what I have done wrong. mostly I was spared too much cognitive damage I mostly struggle with the physical side. but I think al survivors have emotional issues. it knocks your emotional life right over. theres some stuff on the site about that you might find helpful. the waiting list for help is demoralising I know.
you are doing great. and yes this is likely to be the hardest thing you both have ever had to do. things change. hang on to that.
go the distance.
best wishes
Tony
you are so right
and those of us who are lucky enough to have loving partners really are the fortunate ones I am only just becoming able to give something back. this after three years! but I still screw up and get very self centred. I don't have the flexibility to respond as I want to. but presence is enough sometimes. my wife is having a tough time at work just now so I am just trying to be there to listen to the story takes a lot of energy. but she gave me more than that in the crisis days. in some ways the early crisis is simpler because you know what has happened and the initial survival instincts kick in. As you say survival is a marathon not a sprint. and the long haul can be really boring and frustrating. we survivors and our loved ones have to find new ways of living and being with each other. we both are in a long process of recovery from a shattering event. theres no right way. theres just what you can do. and being there is the top thing. at least in my experience.
bigging it up for carers!!
you did great. hang in there for the long haul
Tony
Donna, as has been said the aftercare for stroke is generally quite poor, yours sounds truly shocking!
no physio?!
I at least got that for a numb non moving hand, physio home visits several times a week, then further at hospital. maybe you should pursue obtain physio from somewhere for your husband? also possibly speak to your council, get adaption made to home, downstairs bedrooms, grab rails and the like.
also you are still very new to stroke world,
slow improvements are to be gained. things will get better, but looks as though you are going to have to push for help from certain devices from nhs etc. a pity you have to do this as you already have too much to deal with.
gods luck, my best wishes.
V.
Hi Donna, have you tried to get in contact with your local stroke group, they will get someone out to see you and give you a whole lot of help and advice mine was invaluable to me. My stroke consultant did all the paperwork for claiming for PIP, ESA and blue badge, came with me for the interviews. Also will be able to suggest where to get the adjustments you need at home.
You're doctor may not have heard from the hospital yet about the stroke, so if I were you I would ring them, ask them to get the doctor to ring you and ask him for help he can refer your husband for physio and suggest other things that might help. If your husband is able to go to the doctor then you will be offered appointment, but if not ask the doctor to come out. Did the hospital not give you discharge paperwork for the doctor mine did?
Good luck
Wendy
Hi Donna,
Something has gone very wrong here - your husband should not have been released from hospital without being fully assessed in terms of his independence and should have some form of aftercare package in terms of physio, occupational therapy and social services support. If you are in the UK, speak with your GP about this - this is not the standard procedure. As your husband's carer, the Hospital should have observed their carer's charter and fully involved you in all planning for your husband's discharge.
When I was discharged from hospital eight years ago, I was able to walk and use the toilet unaided and washed using a seat that spanned our bath, provided by the Occupational Therapist. I had to sleep in a downstairs bedroom because I was supposed to only walk up and down stairs with three adults in attendance. I'd spent almost four months in hospital before that discharge, a long time but my initial prognosis was that I would spend the rest of my life in a nursing home, at 43 years of age. Our house had been adapted with an extra handrail for the stairs and steps to get into the garden and house - Social services paid for all of this.
Get in touch with your local Stroke Association - they will have contact details for the local Social Services and can talk to you and any occupational Therapist. You are not alone and have a right to help and support. There may also be a local Stroke Support or carers group you can both go to - talking to others about how they got through things can be a huge help.
My own story is not dissimilar to your husbands. I had a massive stroke at 43 while self-employed. It devastated our financial reserves and we had six children in terms of my Wife's children, my children from a previous marriage and a child we had together.
I found employment again, we managed to keep the roof over our heads and life has only become better over time. Younger stroke survivors have better outcomes and you can still have many good and happy years together. Treat where you are now as a "low point" and you can only go onwards and upwards from here. It does get easier, I promise.
Take care now,
Damian
Thankyou, I have had social services out today to do an assessment on my husband and I have a OT coming out on monday so after having to get myself really worked up to the extent I’ve just broke down on the phone to ppl it seems I may be getting somewhere, thankyou for your comments x
Looking for a little bit of advise, the last couple of days my husband seems to of gone backwards again, his limbs hurting and complaining they feel heavy also feeling off valence and keeps going dizzy and his speech and memory has been poor again, is this normal? I did ring my GP and he said it didn’t sound like anything abnormal but ever since this has happened I’m so anxious, I just wanted to know if this is something that happens? He feels very upset with it all ?? x
Thankyou, very reassuring to know all this is normalc
Hi Fiona, This is not unusual in the early days and May last longer. The feeling of heaviness may be to do with muscle wastage. My weak left arm still feels heavy three years later. I also have to be very careful about balance and still have unsteady wobbles every day. In many ways I have improved enormously, but I am still partly disabled. He will improve, but recovery offers no overnight miracles.
Thankyou for your advise it’s so good to know that what he’s going through is normal and I can reassure him, I’ve just read your comment to him as he gets a little worried with it all x
Thanks Tony
I've been very lucky to have had such generous support from this forum, it made such a difference, as we knew absolutely nothing about stroke, the experience completely pole-axed our lives!
Hope your wife's work situation can work out soon - it's such a big part of life, and when it's tough it makes life exhausting ?
Best wishes, Nic
Hi again, I'm glad to have hopefully helped in some way.
I hope you get more support than you've been given so far and it sounds as if things are improving. Well done!
The 'system' sadly, isn't geared up for younger, working Stroke survivors and families. That doesn't mean it is easy for elderly families but they are less likely to have the pressure of children, work, wanting to live a normal life and keeping a roof over all of your heads. You are literally all fine in the family one moment and the next your world turns upside down.
It is hard but things really do get better 
Stay strong and keep on keeping on!
Damian
Hi. My husband has his stroke in 2017 and hid right side was paralysed and his speech has been severely affected. I've had to give up work and look after him full time. His physical ability to walk has been improving but he does suffer with difficulty using his right arm and hand. I've found the gp useless but have found support from other groups if you'd like some information I can send it to you. Hope you're doing ok under these difficult circumstances x
Hi Helen, thankyou for your comment always feels easier knowing your not the only person go thro this, we finally had the OT come out this week and things are slowly but surly starting to move forward. I would appreciate any information tho pls. Thankyou x
So today has been a horrible day ? I got shouted at Thro frustration and my husband called me by his ex wife’s name ? I know he can’t help it but it still hurts....then tonight he broke down saying he feels like I’m drifting away from him because I have carers coming in mom/fri just to help me whilst I’m getting the children ready for school, I’ve tried my best to reassure him I’m going no where and that I love him to bits but it’s hard on us all right now...I’ve come to bed feeling totally deflated and feel like I’m letting him down...this is so hard ??
Please don’t feel defeated. Stroke survivors feel very vulnerable about their relationships in the early days. You feel so many conflicting emotions: anger, loneliness, fear, worthlessness and a whole lot more. Those you have been closest to suddenly seem a long way away. You hate your own vulnerability and your lack of control over your own life. But....it will get better. Have a good night’s sleep. I hope you have a better day tomorrow.
Even now after three years I find that my moods are inconsistent. I can feel top of the world one day and then the next deflated and quite flat. This seems to be fairly standard with stroke victims.
Deigh
Thankyou, today has been a much better day so far, I’ve been giving him lots of cuddles and reassurance and he’s been to the hospital for his eyes and everything has come back fine so some positive news for us x