Hi there am reaching out to try and find some advice - my husband ( 55) had an acute stroke ( and heart attack) at the start of the year, this has resulted in the loss of most of his vision ( cortical blindness and apraxia of the eyelids) as well as some cognitive impairment … he’s currently at a rehabilitation centre ( after seven weeks in hospital) … the staff are now discussing a home discharge … I am at my wits end at how this is supposed to work, I have my two youngest children still at home… will have to increase my working hours … I don’t know how I’m supposed to manage having him back in the house?? How are these things decided?? He’s going to need help with everything and can’t be left alone ( while I’m at work)… has anyone ever gone through a similar situation?
Hi @Poppy2013
Welcome to the community, I’m sorry to hear about your husbands stroke and the difficult situation you’re in.
My first suggestion would be to give our Stroke Support Helpline:0303 3033 100 if you haven’t already done so. They have a wealth of knowledge and will be able to talk you through the process of discharge and what sort of things need to be thought about during this time.
We have had some conversation on here about discharge which you may find helpful to read through, I’ve put a couple of them below. You can also use the 
in the top right hand corner to search for this topic - if you type in Discharge, lots of posts will come up which you can also read through.
Care at home - what can we expect? - About stroke / Discharge - Stroke Association Online Community
I know we’ve got some people within this community who have been through similar and I’m sure they’ll also be along soon to offer their advice on this too.
In the meantime if you need any help with the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Best wishes,
Anna
Hello @Poppy2013 - welcome to the community. Sorry you are joining us at a time that might be difficult for you but hopefully we can help you a little.
You situation might be putting a lot of stress on you and your family which is understandable and to address that, let us start by saying this is not something that should be rushed.
There are a lot of things going on and lots of things that have to be considered to try and get the best outcome possible.
Here, I do not have the full details about the exact circumstances and so the advice is necessarily generic. You can get specific advice from others with more detailed knowledge of your situation and perhaps whose job it is to advise.
People who will be able to advise include :
- the consultant treating your husband
- therapists (physio, OT (occupational therapist), SaLT (speech and language)
- social worker
- dedicated team worker - person who is point of contact for care team
- Citizen’s advice
- Others as appropriate
What is needed:
- you and your husband if he has the mental capacity to make these decisions need to know what you would like in terms of ongoing care support plan.
- person centred care plan is required - this is a care plan that details the care needs and who is responsible for delivery. The plan is created with input from all parties interested in/affected by the care of your husband
- who will pay for it/how will it be funded
- what care is essential
- what care is “nice to have”
- Financial help - are you able to meet the care needs costs?
- Benefits you will be entitled to as a result of you (your husband) needing care support.
- Have a healthcare insurance protection, either personal or from workplace?
The decision of where your husband is to be cared for should involve your husband and yourself and if he is to be cared for at home (assuming this is your decision) then what equipment and home adaptations are necessary to ensure home care is feasible and safe.
If you are working and have children to look after who will look after your husband?
Carers are available and depending on the severity of the condition, the assessment will be made to determine how many and how often these carers will come to help.
These are just some of the things to think about but specifics can be addressed as and when known.
Main thing to remember is do not be rushed into making decisions and make sure you have ALL questions written down so you do not forget to ask them.
Get all the answers, make sure they are satisfactory and then decide if the care plan is one you can manage and accept.
Wishing you and your husband all the best.
Namaste|
@Poppy2013 Hi & welcome to the community. So sorry you’ve had cause to join us. @ManjiB & @Anna_Moderator have said most of what I would have said do I won’t repeat it.
You need to make sure that whatever decision is reached is in all your best interests. Your husband has to be safe & the people involved in his care need to ensure he will be before they discharge him. You will need adaptations & aids put in place & you must insist on all of this being in place before he is sent home.
You can also try speaking to Citizen’s Advice re any financial & other support you may be able to get. Adult Social Services might help too.
Wishing you all the best.
Ann
@Poppy2013 - What Ann @Mrs5K says below is very important. Please do not allow yourselves to be rushed/bullied into being discharged into a home that is not ready for safe and comfortable ongoing care.
Question(s):
- How capable is your husband of making these decisions?
It is his care plan we are talking about here and so he is the primary person of interest. If he is able to make decisions, then he should do so. - Does he have a Lasting Power of Attorney (LPA) in place?
If husband not capable or no LPA in place, then you as his next of kin will likely have to advocate on his behalf
I found this that might be helpful? Discharge home when mum requires 24/7 care Also maybe you might consider a care package getting in touch with care direct in your area and discussing what might work for you and your family needs.
It’s a very stressful unfamiliar path and worry is the first obstacle we meet. Discussing it with care direct they may have ideas also the stroke association help line. I’m sure they have come across this befoe
Hi there, thanks to everyone for responding … I don’t know what aids and adaptations can be put in place … we live in a small terrace house with a narrow/ winding staircase … steps down into kitchen and toilet … upstairs shower over bath … his sight is minimal and as well as ten tablets a day he also needs an insulin injection and regular blood sugar readings taken … I don’t know what local authority care packages involve but we don’t have the funds to pay for anything privately.
This is why you need an assessment done of the home first. They will aee what can be adapted & whether it is safe for him to come home. There are all aorts of things out there that most of us would never think of that may just help. You should also get a financial assessment done as care is still available for those who can’t afford to pay. This assessment should be sorted by the hospital / rehab place. Your local council may also have options for financial assistance for things like installing a wet room etc. It is worth looking into.
Best wishes
Ann
@Poppy2013 - just to echo what Ann @Mrs5K has said in her response and to perhaps add a little.
You should not worry too much about things - there is help available including financial.
The tea working with your husband will be planning the discharge and you (and your husband if he has capacity as well as any other relatives who might be able to help) should be involved in the planning.
The home assessment might be carried out by an occupational therapist (OT) and needs to take in consideration all care needs and ensuring safety. They (OT) would need to ensure access to washing, eating, sleeping etc. essentially all things your husband will need at home as well as things he carers will need to help care for him.
We asked that all things available in hospital should be available at home. In our case this included a hospital bed, riser recliner chair, hostess trolley, hoist to transfer from bed to chair, wheelchair. But the team will know what they need to provide. That is not to say you should assume they will - make a list and ask/remind them. Get everything BEFORE the discharge to home as it can be difficult once the patient has left hospital.
The hospital (team - Medical Discharge Team) will likely do a care needs assessment and this will indicate if the NHS will pay for the care or if it will have to be funded by other means. If NHS will not pay, then you can get help from the local council and so it is important to have a social worker to help out.
It seems your husband will need carers (one or two depending on his condition) and this again could come through the local council social services if you cannot afford to pay for it yourself.
You should have a team keyworker who is your point of contact with other members of the team. You can ask the keyworker any questions and they will relay to appropriate member of the care team.
Hope this helps - remember, get everything in place before you agree to discharge to home - they cannot send your husband home if home is not ready. You should stay alert and not get sidetracked or “bullied” into accepting a care plan that does not meet the care needs of your husband.
If you cannot care for your husband then you should not be expected to. This might sound harsh, but you have children and a job and these things also have to be considered and the best possible outcome should be arrived at.
Wishing you all the best.
I don’t understand where a wet room could be installed - there’s not a room spare to become a wet room!
The main issue here is that he’s basically blind - and without sounding blunt / harsh / selfish etc I don’t want my tiny house turned into a medical facility - ideally he would get continuing healthcare funding and a place in a residential care home type place.
If being in a care home or similar is in his best interests then that is what you need to tell the team looking after him. I’m sure you have been, but be completely honest with them and tell them he can’t come home for all the reasons you have stated.
In relation to the wet room example I gave that would likely involve turning your existing bathroom into a wet room. None of that is relevant though if his care needs are better met elsewhere.
They will always try & discharge someone home if they can as that is often considered the best place for them as well as often being the place most people want to be. You must stand your ground and tell them it isn’t safe for him. I hope you get it sorted soon.
Best wishes
Ann
Again, I echo all that Ann says.
From what you have said i.e. a small house, two children and possible special needs adaptions required to ensure home is fit for purpose to meet your husband’s care needs, I would be surprised if the care team would allow your husband to be discharged home as it is.
That would leave the option to adapt the home to meet his needs, so wet room and lift or conversion of downstairs room etc. Since you have to consider the use of the home for the whole family, it would seem unfair for the family to lose out if the home is adapted but does not meet the needs of the whole family.
This seems like a tricky situation and the team will have to work hard to come up with a solution that meets all needs for the cared for and the family as a whole.
As explained by Ann, you must stand your ground and do not be afraid to challenge any decisions you do not agree with.
Wishing you and your family all the best 
Oh dear Poppy that is hard. I felt the same last year when suddenly the hospital wanted to discuss ‘discharge’, at a time when my wife was severely disabled in various ways. Use the Social Worker! Hospital one was great. Of course I don’t know your finances, but she also helped us through all that, and my wife went to a care home until nearly Xmas. 67 years old at the time. Not as young as your hubby, but not old! But over that time the community OT people did some things round the house. I got my head around it for want of a more technical word! It all takes time and there is plenty of it. Just don’t let the hospital run their own agenda. Everyone has an agenda it seems. If funding is difficult check out Continuing Healthcare funding. The social worker , I think, is key. They are the key to many services you may not be aware of. Good Luck! I write this while my wife snores in bed! So good, it can happen, she needs my 24 hour help, but its worth it, and I needed to be ready for it. You’ve got children. Demand help! Good luck.
Unfortunately his social worker is pushing for a home discharge …. I’m not in the position to be a full time or even part time carer … I need to be at work full time and don’t have the luxury of being able to not work/ be at home … I work late hours at times and some shifts … him being at home alone is an accident sitting to happen - have had some good conversations with the psychotherapist who seems to think he needs a place that specialises in brain injuries and neuro behavioural rehab long term / residential
@Poppy2013 , @clubhub1 is absolutely right everyone has an agenda!
You have an agenda too!
If it is the intention that your husband is to be discharged home, as they seem to want to do, you have to put your foot down and tell them what you are telling us.
As far as I know, they cannot force this on you, so they will try hard to get you to agree but as long as you keep pushing back and explaining why it is not the right option, they will have to find the solutions to make it happen i.e. make the home safe, arrange for carers as needed etc.
It is not going to be easy as it is very much, or so it seems, them against you.
You may wish to contact your local MP to see if they can help you.
Takes care.
Sorry to hear about what has happened to your husband and the really difficult situation you are in. Agree, his current impairments and your home, family and personal circumstances don’t make discharge home viable at the moment. The psychotherapist is right your husband needs more recovery time and ongoing rehabilitation to achieve as much independence as possible in the long term. I can appreciate that it will be difficult for your husband to accept this because no doubt he wants to come home asap. Unfortunately, there aren’t that many specialist neuro-rehab services about. Headway may know of such services local to you. Next step, ask the service where he is to complete a Continuing Health Care checklist to trigger a CHC assessment to determine your husband’s eligibility for full CHC funding of his follow-up care. It’s likely he won’t be eligible for full CHC funding, but from what you have described he will qualify for what’s called Funded Nursing Care, payment of the nursing element of his care, and possibly ongoing rehabilitation.
I am a social worker now working with nurses to assess eligibility for CHC funding and have a lot of experience of working with stroke survivors and hospital social work. I am also a stroke survivor, having survived a near fatal brain haemorrhage and stroke 25 years ago. If I can help, I would be happy to do so. Please get in touch. David Hearnden
Hi David that’s really helpful advice thank you - I need all the help and guidance I can get right now if I’m honest, so any help would be much appreciated!
If you are prepared to do so, let me have a contact number and I’ll ring you. My work email is davidhearnden@warwickshire.gov.uk
Hi there - thanks so much have just sent you an email 