Worried

[Janner123]

My husband who I love dearly had a tbi in August. He is still in rehab and probably will be for about another 3 months. Until now I have been going a day at a time but I now need to plan ahead as after 3 months he will either go in a care home or come home. He cries nearly every day and tells me he loves me and wants to come home but it takes 3 people and a stand aid machine to get him standing and transferred to a wheelchair. He also suffers quite badly from Aphasia, he can understand what I say but has difficulty finding the right words to say himself. He also suffers with pain in his arm and shoulder, he fell off his bike and badly broke his arm and jaw as well as severe head Injuries. I don't know what to do, I desperately want him home but don't know if I'll be able to care for him properly, it's just me and my 19 year old daughter at home, but I can't bear to spend the rest of my life seeing him upset and wanting to come home.

[Leaf100]

Hi Janner123You are all in a tough spot.

I would call Headway. They will know what resources may be available and, for example, you may need some counseling yo work it through.

I have an ABI and also carr gor an elderly relative who has enough mobility to make it to the loo, and is sharp. She has lost most of her mobility and is in the later stages of a terminal condition

I mention it because it is hard for me to keep up with UT, and your husband needs more care than she does.

As far as home support care supports go, from what I hear the same issues are in my country and the UK - not enough if them, they have procols yo follow that may jot match your needs, you may spend so much time setting up for them it hardly seems worth it.

Depending on where he is in his healing, he may have to stay in a facility.

He is in the early days of his recovery, and he will not be aware of his true state of being. Forgive him. Try to think what he would want for you if he were fully award - I feel the answer will not be him coming home.

You can get an idea from the doctors as to what to expect, though they don't always get it right.

I would say err on the side of caution - make sure you already looking after yourself as he will need you to advocate for him, and you can't do that if you are burnt out. You also can't keep up the pace you are at now if you do not take some times out and do some things that energize you.

You have yo be very practical and take the emotion out if the equation - not so easy when someone wants to go home - and what they really mean is they want life back as it was before.

Have a look at Nanapal and Dogsabighelp feeds - they both have lived ones in facilities, and I am sure will chime in. If you read you can see some of the things they go through.

He will make progress for sure, and it sounds like odds are he will need more care than you can give at home. Try not to feel guilty about it - this is a marathon and a long marathon of years.

It's hard to accept. Especially cause things can improve fast sometimes but still we need to know where the lines are. That's not so easy. Not tor either of you, or your daughter - who also needs to live her life.

Leaf

[paxo05 in reply to Leaf100]

Hi and welcome. Headway is a great starting point that others have pointed out. Hopefully there's a group in your area.

The arm and shoulder will heal long before the bi. It is early days to know the full affects and long term problems he may face.

You will hear the 2 year recovery for bi. This may be medically correct but improvements go on for years.

Having said that every bi is different and so is the recovery.

It may be small steps and a long game but things do get better. There is definitely a good life after a bi.

There is also help out there, but you may need to fight for it. Headway can and will help. They have great literature detail virtually every aspect of bi along with hands on practical help.

Good luck for the future,

Pax

[Pairofboots]

Hi Janner, welcome to the forum. Please speak to Headway, their contact details are pinned to this page. You can discuss your thoughts about the future and they can advise about the practicalities. The hospital will carry out assessments around your husband's needs. I know you want to have some certainty but there is still a long journey ahead. 🍀

[john-boy-92]

What caused him to fall off the bike? I wonder if he had a stroke and the injuries are secondary to that. If it was a stroke, that will also need to be resolved; the Stroke Association may also be worth speaking to.

[mucky1]

My husband had a fall & suffered a brain injury over 2 years ago. When he was in hospital he kept saying he wanted to come home even though he could not stand or do anything for himself. It was very hard visiting him every day, as he was not in a local hospital. I had to make the decision to not visit everyday as I had to run our business as well. I felt guilty for making that decision, but for my mental health & well being it was the right thing.

You need time for you so you can cope with everything that is happening, also your daughter needs some normality, you both need to go out meet your friends and do normal things.

My friends were there for me every step of the way, including taking me out for meals, cooking for us, and driving me to hospital. Take people up on any offers

Hope things improve, please take care of yourself

[pozza40]

Hi janner I was in the same position with my husband, he suffered a massive stroke in may 2020 and after a year in hospital and rehabilitation,came home. My husband has been left with hemiplegia and cannot stand,he can't even sit up by himself. He gets hoisted out of bed into his wheelchair, carers do this, although I can do it on my own but it's difficult.my husband is 6 ft 3 and weighs near 20 stone. I can remember the shock and fear of how on earth would I manage caring for him at home. I'm not going to lie, it is very hard and heartbreaking in equal measures.

It is doable, but my life has become so insular, friends have fallen away,where they can't handle seeing him the way he is and it's just so difficult trying to go anywhere,we just end up staying at home.

My husband's personality is completely different too,he is very child like , our relationship is no longer like husband and wife, I hate to admit it but I'm caring for a person who looks like my husband.

We also have a teenage daughter at home,she's 15 and in the 2 years since he has been home,her mental health has nose dived. She is withdrawn from the friends,her education has suffered and I'm desperately trying to get her help.

My intention is not to terrify you,I hope with all my heart that your husband progresses further as others have said it's still early in his recovery journey but I do wish someone had told me the extent of what is involved. Don't be cajoled into taking something on you are not confident with, get as much help from social services as you can, you can always say actually I don't need this,it's near on impossible to say" I need this" once he is home.

Take care

[Janner123 in reply to pozza40]

Your situation sounds very similar to mine, my husband is also 6'3, and used to weigh 18 stone although he's lost quite a lot of weight in hospital. My daughter has also struggled, she had just started work and was finding that hard too, thankfully we have a very good gp who has given her some anti anxiety medication,fluoxetine, which has helped and her employers have also been very understanding allowing her to work part time at the moment. I find she copes for a while but needs to get away every so often for a break. I'm sure it would help your girl to talk about any problems or feelings she's having to someone, my girl does as although we are close, she doesn't want to worry me with her problems too and I have found it has really helped her

[Janner123]

Thanks very much all of you for giving honest advice. I have had a small amount to do with headway but I will contact them again. I did wonder if something else caused him to fall off his bike and did mention it to the doctors, he was suffering from dizziness due to ear problems just before the accident, but we will probably never know what actually happened. I will speak to the doctor again about this, I have found especially if you move hospital you do need to keep reminding them , he has so many problems it's quite hard to keep on top of it all. I do feel a little better today as we had a meeting with a team from a level 2 rehab place nearer home and they sounded really good, if he is accepted I may just try and use it as a time to have a bit of a break and see how he is in 3 months time but thx everyone, I have got some really supportive friends and family but it's good to be able to talk to those who really understand what it's like to be suddenly thrown into this totally different life

[Bichou73 in reply to Janner123]

Hello. It would be great if your husband could spend another 3 months in a rehab place. My husband was away from home from September 2020 till March 2022. He went through 3 rehab places( 1 and 2). He wanted to come home and we did as well. I unfortunately have to confirm that it is very hard work for the rest of the family even with a 24 hour carer package. If your husband has very complex needs as my husband has he might qualify for Continuous Health Care from your local ICB ( formerly called CCG).

All the best .Don’t hesitate to contact me if you want any more info

[Janner123 in reply to Bichou73]

Thx, my Dad was very poorly with Parkinson's from age 36 to 58 when he suddenly died of a heart attack so I know just how hard it is caring for people, I think that's partly why I'm so worried. Growing up I was looking after my Dad and Mum as she was a great carer for my Dad but would crack up mentally sometimes under the strain.I still remember well , when I got engaged 25 years ago and my 6'3" strong husband to be put his arms around me in a freezing cold Hyde park in London and the feeling, 'At last someone to look after me'

[skydivesurvivor]

am very sorry to hear your news, tough times?! Get n touch with social services to see what help they can offer you, this site offers support emotionally and advice, people who’ve all been in your position. Hope u find relief from all the stresses here. Good luck, a silly smile can relieve anxiety in a weird way….see?

[Janner123 in reply to skydivesurvivor]

Thanks very much for your kind words🙂

[Silkwood20]

Bless you it's so hard. My husband is paralysed apart from eye movements and a little neck movement. I was desperate to get him home initially, but now realise we could not give him the level of care he needs. I have long daily visits, wheel him outside when sunny, we watch the birds..Also we have had a couple of short trips out with a trained carer and specialist kit. We plan to do more things like that. They put him on Prozac a while back and I feel that may have helped him. If the care placement is good and local you can make this work and he will adjust in time. I think the stress of getting my husband home would likely shorten my life significantly and I need to keep alive to support him. Things will get easier and you will find your 'new normal'.

[Janner123 in reply to Silkwood20]

Thanks, I'm trying to remain positive but I am slowly beginning to accept things will never be back to what they were and I'm trying to find what our new normal is going to be. I remember in the early days telling the therapist one of my goals was for him to drive again. I now realise I was probably in denial about the whole situation and being completely unrealistic but it's more now about getting the best life we can have. I don't think he has realised the extent though yet of his disabilities which isn't surprising, he doesn't really remember where he is or why he's there

[Silkwood20 in reply to Janner123]

I can so relate to the driving thing.I refused to cancel a holiday at the beginning, he was on a ventilator and I kept thinking...well he will need the holiday once he is better. It's a huge amount to take in and adjust to...

[philbou]

hi janner

Its a long road to recovery and it takes a long time to realise that for everyone involved

But its recovery. Slowly but surely bit by bit

How are you coping with the practical side

There wont be any discharge without a plan

And if you not happy with anything raise it as an unsafe discharge

Part of the discharge process is a chc assesment very few get funding through this even when the therapist fight to get it for you

So the burden will fall to you if your rich or if not the local authority

Ask for a social worker to be assigned

They will have your husbands best interests at heart They do a very hard job and are often overlooked for there efforts

Sort out his benefit's etc to help there is people to help sort that both in the brain injury unit headway or your local council

Any discharge planning meeting must take into account your husbands best interests and both your wishes

You home will be assessed for its suitability and makes sure any equipment is in place to help

Plan to make your life easier

And perhaps and most importantly please get help for yourself and your daughter

Brain injury's affect the whole family not just the injured person

You are now the provider roles get reversed Everyone has doubts about there ability to cope think practically to make things easier

And please give you husband a hug from me and my wife

I only hope i can help in anyway

Take care for now

[Janner123 in reply to philbou]

Thanks, we live in a house but could fairly easily turn a downstairs study into a bedroom with an ensuite so I won't have to move but I must admit it's all so new to me I'm finding out as I go. I think the rehab teams seem quite good, they would visit our house before they allowed my husband to come home and apparently there is what they call a flat where you can stay at the unit before you go home and see how you get on which I think is a good idea. I guess it's just so unknown at the moment., how he will be in another 3 or 4 months time. What is a chc assessment? I would definitely need carers, I think they offer them 4 times a day and I personally think I may need them at night as apparently he calls for me a lot at night and I will need my nights sleep. Thanks for the hug🤗

[philbou]

chc is the nhs funded care part

Its a requirement that they do it before discharge

What rehab unit is he in it sounds familiar

We in ne derbyshire and went through the northern general osbourne 4 in sheffield

[Janner123 in reply to philbou]

O.k., he's in Colman hospital in Norwich which is a level 1 facility at the moment but hopefully moving to All Hallows near Bungay in Suffolk which is a level 2. I think we come under Norfolk and Waveney for funding at the moment anyway. We live very close to the Norfolk/Suffolk border