I’m wondering if anyone here can help me. My partner has been at neuro rehab for six weeks, and has a further six weeks until proposed discharge date (which is 4th May). From the very start of all this, I have said he will be coming home if he wants to (which he definitely does) and that I am willing do to anything to make that happen. I’ve had our flat assessed and they’ve stated it meets his basic needs-they would prefer a wet room as he is unable to stand at present but there is disabled access and ample space for a hospital bed and hoist.
The options for discharge appear to be-another short stay at the same rehab, a move to a care home with slow stream rehab, or coming home. I’ve been told that slow stream gives therapy around 3-5 times a week and in my view this simply isn’t worth him spending yet more time away from his home, he could easily have that here. We should be having a halfway meeting - this has been proposed for 3 weeks time (14th April), 3 weeks prior to proposed discharge. I feel like I am very much in the dark and as his carer this is upsetting and concerning.
So, what I am asking is-does anyone have any experience with this discharge process? What do I do to try and get some answers? What are the next steps if they state he can’t come home due to insufficient funding?xxx
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Unfortunately I can't answer your questions. If your home is leasehold, with the freeholders permission then adaptions can be made and funding is available, if rented,then it is difficult to gain funding and permission.
I would recommend talking to as many carer's as possible. We all would say we would do anything for the one's we love, but relationships do tend to suffer at the expense of caring. Really do your research as caring is very different than what many imagine. 24/7-365 days is a massive commitment, and tests the most committed of people. I'm not saying you cannot do it, but really think deeply. Good luck 🍀
The occupational therapists have assessed the flat and deemed it suitable for meeting his basic needs. The only issue is the bathroom, where they would prefer a wet room, but in time this may be less of an issue.
In all honestly I am already caring for him for hours and hours each week. I do everything that can be done remotely-picking up and dropping off laundry as the hospital aren’t presently doing it, attending appointments with him, hours spent getting through to the hospital to set up FaceTime calls at least once a day, all financial and administrative matters etc., on top of a full time job. I’m fully prepared to stop working if I need to-I think it’s hard for people to understand the intense emotional and psychological strain of having your life partner away from you and only contactable via FaceTime, especially when you are as joined at the hip as we are.
I was able to visit daily at his previous hospital and as such was helping provide his personal care on a daily basis. I know it will be hard but it will be so much easier and more comforting to have him home, which is where he desperately wants to be as soon as he can. Xx
I was just playing devil's advocate to a point. A lot of people's relationship is altered so much by being a carer.
If you have permission to make alterations to the flat then the OT can work with social services to address some of the issues with the bathroom. Most councils have grants for this type of work. Having the OT on side helps to expedite the grant process, which usually has to go via a panel, so it's worth getting the ball rolling. Also if the flat is leasehold, it can be problematic finding the freeholder and get permission. If rented then you will have to rely on the good will of your landlord, and you will not get a grant.
Where I lived before I got a grant to change the access to the front door. A year later they had finally agreed the grant, by which time I had to sell up, which admittedly meant I didn't need the adaption.
Also you should have a carers assessment, to make sure you get the support for your needs, the council has grants for this as well, and they come through quicker. Also you say about possibly needing a hospital type bed and a hoist. This is hard graft, so you might want to consider having carer's coming in to assist with some aspects of care, at least at the beginning, plus mobile hoists, you will need training to operate the specific hoist safely.
I talk as a retired nurse, and experience of a relationship where my wife at the time became a carer, the relationship did breakdown as it took years to stabilise me, and she although also from a caring background, couldn't understand what the stroke had done, so she became abusive. I prefer to think it was due to frustration, although I know different. I was retired on ill health grounds, but my job was around behaviour, so I could see the drivers around the abuse, and the only way of resolution was to stop the abuse head on.
But that was my experience, and don't take it as a reflection on you. I really do wish you and your partner well, and from the way you talk, I am sure the two of you will make a great team.
Thanks Ian.Yes I am very comforted by knowing the flat is already deemed to be suitable. We are renters but I am more than happy to move if needed. I just want him back home, and he wants that too. We will need carers to be coming in; we will see what the care package is.
I’m so sorry about what happened with you and your wife, that sounds very upsetting. I hope you are doing well. Xx
Sadly I think it's a postcode lottery but aware Covid has had impact on care pathway which is stated on medical records/letter. Once my husband home brain injury team didn't visit for 10wks (however I did refuse residential for him number of times due to behaviour, nursing him, safety) they just telephone check ins,, they commenced home visits in June for average 90mins a week until December 2020. Then lockdown despite January appointments booked, absolutely nothing since and not a return call from 19th January. I work full time, 2 children 1 home learning now at school sitting exams, toddler now 3 has 2.5hrs per week at preschool, I've managed to squeeze my caring down to 75hrs hours per week, that doesn't include basic tasks or medical appointments.
If I known what to expect and lack of support from professionals, friends, family I would of made referral to adult social care for assessment of needs 100%, but it's gone on 12mths now, adapted, adjusted, juggling like no ones business and recognised were managing and don't need referral. I have not had one single person physically support me with husband and children not even 30mins. My only rest when everyone settled in evening and my bed time fags which is now before I start again, that's if no one wakes up during night.
I'm his wife through sickness and health and on a mission, yes it puts a massive strain on our marriage, but he is my soul mate the love of my life, my husband, father to our two beautiful children.
If you have a supportive family then get a rota in place for support, but don't expect it long term.
How I've managed solo, I don't really but pretty good at organisation skills (like military) so it comes natural juggling, identify routine, structure, problem solving.
On discharge inform his GP, believe it or not hospital and GPs, infact all communication poor you have to do it all.
Department of Work PIPs paperwork and apply for disabled badge again make sure you have medical letters will need copies to send off.
It's another new area the paperwork side for me and I don't really know but luckily I had advice from this forum, none from hospital.
The support your currently giving with the caring side whilst hes in rehabilitation, sorry to say is nothing to how it will be when hes home, it's not no way taking away the care your giving whilst hes being cared for, but when hes home it will be very different, however positivity on progress needs to be peak at all times, your attention will be in constant demand, constant worry, timing of meds, med reviews, safety elements, diet, fluids, nursing side, toileting, showering, dressing this is just snap shot with my husband mobile. The behaviour side has improved for 9 days now (it's a record) even with minor blips so progress, but luckily your partner has no behavioural issues, so at least that's one less topic with how to manage.
Theres no way to describe how emotionally and physically you have to prepare with caring everyone is different, different level of support, different coping mechanisms, but you will both adapt first 6months very much trial and error in that stage, 6mths to 12mths adjusting to new changes. Were only at 12mths so that's all I've got for now.
Yes, I understand it is a huge amount of strain and am as prepared as one can be for that. It’s also an enormous strain having him away and being unaware of how he is doing all the time. I have no other responsibilities outside my partner and am happy to stop working if I have to (though I would of course like to continue).
What was your experience with the discharge process? Did your husband get offered rehab in hospital, or in slow stream? I really appreciate your words and views on caring and I am aware it is going to be very different, but since December it has been 24/7-not physically, but I’m constantly on edge, never get the ability to really relax, because I feel like I’m always waiting for a call. It’s terrifying, and being unable to speak to him except through a phone just isn’t good enough. The emotional strain of having him away is beyond what I can describe, it feels like it is tearing me apart at times.
Yes I have a lovely family who live close by and are very keen to help, I have great trust in my mum, mums partner and my sister particularly. My partners family are also very keen to be around him. Xx
The discharge occurred day after police search on my husband and luckily found, due to 8 days of hard evidence with my husband under deprivation of liberty order NHS didnt have leg to stand on, I phoned up put my thoughts very clear and picked him up 31st march he was in post traumatic amnesia until end of July and traits went roughly November. NHS had no staff, they had rehabilitation placement, he was not going on the basis of nhs lack of basic care, lack of safety and no consistency with staffing they couldn't handle him at two hospitals. I took a huge risk, but despite the trauma totally glad of my decision.
You will find all decisions will be purely on your partners best opportunities, interest, progress, continuous rehabilitation and quality of life, family life. Lol None of my decisions made in the past 12mths have been best for me, its not on the list and wont be for a very long time, and sadly being a full time carer it's how it is. Keep physically healthy, blow the clouds hard when it becomes emotionally overwhelming lol theres been smoking like a trooper when everyone settled (survival kit).
Hello! I unfortunately do not have any answers for you although I have been through 2 discharge processes. I have learnt that rehab places are very hard to find at the right level. So in a way I would say if offered rehab take it.
Discharge tends to happen very quickly in spite of the video meetings that seem well organised.
Try and make sure what rehab provision will be in place before your partner is moved. Is there a Keyworker you can talk to where your partner is now in between the meetings?
It’s a long and hard road to recovery and we all want our loved one home. We want the best for them and we have to stay strong fighting for their well-being.
Hi, yes he has a key worker who is a physiotherapist but she never seems to have much information for me to be honest.
I was under the impression that it would be quite quick-and that ultimately, the system aims to bring people home. So, I am confused as to why I am finding it so difficult to get information. I do often think we should take as much rehab as we can get, but my partner is so keen to come home and has proven time and again that he responds significantly better to friends and family than anyone else. Xx
My wife was made redundant because she came daily to the hospital, at first her firm ensured she was paid, then SSP, then when the large firm was in trouble, they were looking who to get rid of and so with me not working she had no job. (They did eventually go into administration). However, that is minor compared to the ******* who work in the public sector.
Incorrect PIPs. I was in a coma, but assessed to be able to dress and feed myself! (still never received a bean despite their incompetence and later told out of time for appeal).
Similarly DWP want dissolving. Morons! They couldnt get a proper job. So instead of assistance, I would be better prosecuting them, if only I had the money to do so.
Occ Therapists so stupid that they thought Kylie Minogue had been to see me. Ask the wrong question, have absolutely no common sense or analytical understanding and you will get the wrong answer.
The only person who got it all right was my neurosurgeon, whose advice was, ‘if you want something, then you will have to do it yourself’. How correct he was.
All so sad and not helping you in your quest but I say this so you are aware of the idiots and buearocrats that you will have to deal with. Much the same as those ****** who hid behind “policy” when Grenfell was not evacuated. The same ones who got the Covid response so, so wrong last year. Sadly we put those in power where they are and the huge buearocratic juggernaut that pervades the public sector is of NO help whatsoever.
Sorry for the rant, but none of them are any help and they take great delight in covering themselves and being obtuse and unhelpful. ☹️
Luckily we have the Headway charity, 😇who gave brilliant advice that was better and more correct for immediate action that a stupid so called qualified OT sitting there was unable to rationalise or do anything about.
Wow it sounds like you’ve had an absolute nightmare to deal with, going through all this on top of your brain injury. I’ve applied for new style ESA for him but having a real struggle getting hold of a “fit note”-called the ward he is on but they just provided a letter, which won’t do apparently, and then upon calling GP surgery they said he needs to go in for an appointment?! Explain the situation in an email and am awaiting their response. Completely agree on the government, not my politics regardless of situation but watching what’s happened over the last year, I’m astounded anybody would vote for them.
Yes I will be calling headway tomorrow. It just seems I should know more by now so I’m confused as to why I’m in the dark about next steps. Just feeling so very lonely-calling him is one of my very few joys in life. Truly cannot wait for him to be back with me, it can’t come soon enough. Xx
Sounds like your partner has a good attitude to want to get home. I was likewise. It will be tough for you, but its one tick in the box on the long road to a recovery, even if it is different to what it was like before. Take one step at a time, then congratulate yourself on any even small, minor victories.
Like a destination on a long , long road, each tree and road sign you pass is one step closer to your destination. Lots of trees passed will see you hit major goals.
What I will say though, for both you and your partner is that calmness and rest is exceptionally good for recovery, something I would recommend wholeheartedly.
Plus coming here. Its the best I have found for support or simply letting off steam. I have no aspirations that it will always meet my needs, but whilst it does, I am delighted. (I am not alone. A long time friend who works for CA, said that Headway is her ‘go to’ when recommending resources).
Yes, financially there has been a bit to work out so far but I have managed. At what point do care packages start being discussed? Theoretically we are just 5 weeks from discharge and I’ve heard nothing!
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