My 17 year old son had an accident 6 months ago. He suffered severe head trauma and has been left in a minimally conscious state with complex needs. The hospital wants to discharge him to a nursing home that can take care of him but we want to bring him home. Has anyone gone through this or is going through this at the moment?
Advice on severe brain trauma : My 17 year old son... - Headway
Advice on severe brain trauma
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Hopeful1966
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I have not had this experience, but your house would need to be assessed by an Occupational Therapist, and possibly a Physio to see if it is suitable and advise about adaptions required to meet your sons need's. If you own your own property, then you can access grants for essential adaptions. If you rent/lease, unless from the council, it is unlikely you will get permission to adapt the property. Even with grants, you will encounter costs.
Hope this helps, best wishes.
I've no experience of this Hopeful, but I do know you'll need a firm care package in place before such a massive undertaking. I suggest you phone the Headway helpline for professional advice on the complexities of caring for your son at home. You'll reach them on freephone 0808 800 2244 .
All best wishes for you and your son, Cat x
It was a long time ago, following a brain hemorrhage which left me 'locked in' after an 8 hour operation, 3 months in hospital having intensive therapy I was allowed to go home while waiting for my brain swelling to reduce so I could have the original skull bone put back. We lived in a council house at that time after a home assessment which basically put a bed in the 'front room' and some training for my sisters and parents on how to meet my needs. Even today (40 odd years on) as I write this with tears in my eyes. I can not express the emotional positive effect that 'returning home' had for me on my long road to a lifetime of recovery. I think that the psychological positivity from having 'made it home'! Unless there are major clinical concerns, I would fight for what you want. Ask your lead consultant for their recommendation as a start point and take things from there. Look into 'continuing healthcare' and advice from charitable organisations i.e. Disability Rights UK, Headway etc....do what your son wants as much as you can .......I'm always happy to have a chat if you want to contact me directly ....I'm not a clinician, just someone with 'lived experience' and could only give a personal perspective..... Good luck and remember 'giving up is never an option'.
Hi,
Your story was very touching, it must have been very hard for you all.
May I ask how long you were ‘locked in’ for? My mum is currently minimally conscious and it’s the most devastating situation.
For me it was about 3 weeks intermittent consciousness, I could hear things/see things -didn't know what was really going on .....it was all very cloudy mostly but still there if you know what I mean ?....it's hard to explain but you know you are there just can't properly relate to anything .....
Thankyou for your reply, it’s very helpful and I can I my hope that my mum begins to ‘wake soon as it’s been 3 months already.
fingers crossed x and a little prayer.....
Hi, I am in exactly the same position as you at the moment and can completely empathise with how you must be feeling.My son suffered a severe TBI 10 months ago and I am currently fighting for him to come home.
The recommendation after 6mths was for him to go to a care unit but I couldn’t
The hospital where my son is want him to go somewhere where he can be maintained but after consulting other professionals they have said he needs to be in a specialist rehab centre with the hope of making enough improvement so that he can come home. He is making small improvements every day, he can smile when he wants to and he does get upset and cries. He is very aware of what is going on around him but because he scored low on the Coma Recovery Scale the hospital doesn’t give him much hope of getting better. We will keep on fighting until we get the help he needs. Don’t give up the fight.
Sorry the full message didn’t previously send! After 6 months my son was transferred to a rehab unit instead (after many phone calls and pushing for this) He has since made small amounts of progress and even managed to say a couple of words after 7mths! He is also more aware and smiles and cries, I’m convinced he will benefit from coming home and being around those he loves. Please feel free to contact me anytime.
My daughter is in a minimally conscious state. When she was discharged from hospital they wanted to send her to a care home. I fought for her to go to rehab and after that I brought her home. Although she is still in min.con.state she has improved a bit. She needs 24/7 care but at least she is at home. Personally I wouldn't have it any other way. She is with me every day and she can hear me too.All the very best
We are going to fight to get him into rehab. The hospital want to maintain him as he is but we are determined to do everything we can to give him a chance of some recovery. Our end goal is to bring him home.
Keep strong x
Hi YemmahbouYour daughter sounds like she is very lucky to have you. My mum is in a similar state and is waiting assessment at a specialist unit. After this we plan on bringing her home. She just had a PEG in. Hope you don’t mind if I ask how you have found caring for your daughter at home and if you have any advice ?
Hi Pickle49I am sorry for the delay in replying to you.
Having my daughter at home was the best decision I made. I see her every day and I keep an eye on the care. She has 24 hours carers. It is obviously tough seeing her in this condition. She used to be so bubbly full of energy.
Anyway every afternoon we bring her to the lounge where I then read to her, sing,
massage and exercise her limbs. The exercises have help tremendously. She's come a long way on that.
Unfortunately there is no help from the neurologists. As far as they're concerned they feel there is nothing they can do. I have been asking them and still waiting for an Mri scan to determine whether there's been a change in the brain.
If you have any specific question feel free to ask me.
Every brain injury is different of course but the care is the same.
Talk, sing, read, be there. Make sure you have help though.
Please let me know how you mum is getting on
Good luck. Don't give up hope x
My mum is in a minimally conscious state after a cardiac arrest. We are only 3 month in but it feels like a lifetime when they give you so little hope. She is now in a rehab unit where we are hoping for some small gains.
Sending love x
Hello Laura. How are you? What are they doing for mom? My sister got sent to an ltach to try to be weaned and they must have her drugged because we finally got them to set up a facetime and she was out like a light. Didn't move in 20 minutes but was blinking. Before she went there she was so active they had a fall risk on her wrist band. I had her following blinking commands etc. We haven't seen her in 8 days because they have no beds and she is in the isolation ward. This is horrible. The neuro there saw her and gave no hope. All he did was pinch her, twist her ear, pound her chest, stick his nails in her nail bed and say no hope. Why are they allowed to torture them like this? All the nurses had to do was touch her before and she responded. These patients are mistreated. They have to set new guidelines with the inhumane treatment. Is mom responding more? I hope you are ok. This is extremely hard!
Hi Hopeful- Ive just come across your post. So sorry to hear about your son. Hope you managed to get your son into the rehab unit. Six months after a TBI doesn’t seem long enough time to write someone off. There are guidelines on prolonged disorders of consciousness from the RCP that should tell you what the care pathway should look like. My mum is (I think) also in min conscious state and is on waiting list for Putney PDOC unit
We’ve just had a best interest meeting and it’s been decided that he needs to go to a specialist residential home with experience of dealing with TBI. We’ve been told this could take months due to funding. They want to discharge him without putting a plate in his skull. We’ve said definitely not. At the moment he’s fighting pneumonia. We’re hoping that by the time he gets over the pneumonia and has the plate in he’s starting to come out of the minimally conscious state. The end goal is to get him home. It doesn’t matter how long it takes he will come home.
Hello Hopeful1966, we as a family are going through a similar time with our son. He is 38 years old and suffered a severe cardiac arrest September 2020 resulting in a hypoxia brain injury. He has had several setbacks due to lack of care in acute hospital pressures sores/sepsis but since December has been in a wonderful rehabilitation hospital. Unfortunately due to severity of pressure sore on his sacrum area some therapies were very curtailed - only just managing to be seated in a wheelchair for 1hour 30 mins this week. We have a funding meeting on Friday with CCG and outcome of this will determine our sons next step to residential care - discharge date 22nd June. Our son is at present needing 24 hour care - he has multiple complex nursing needs. We have done our own research and like you know our son needs a placement that has experience and trained staff in brain injuries. We have found one that meets his needs and also provides physiotherapists, speech & language which is vital to continue with any future improvements our son can achieve. Problem being will this meeting result in them deciding if he should have full NHS continuing healthcare funding and if so will this cover the full cost of this placement or will they try to place him in a cheaper alternative - funding pot being the bottom line with them. Obviously like you we will fight to get him the care that he requires and deserves.
We don’t know at this stage if our son returning home will ever be a possibility but in the meantime we will endeavour to support and encourage him every day.
I hope both our sons can have the best futures possible and be given every chance to achieve that.
This is so hard to go through and I wish your son all the very best in his recovery process.
Take care Nanapal. x
Thank you so much for your kind words. The hospital has recommended a specialist rehab unit for him, we are just waiting for more details. The place they have recommended has the therapists he needs. We are just hoping and praying that he comes out of the low level awareness although he is starting to be more alert and interacting more but he is very inconsistent. He is now sitting in a wheelchair for up to 5 hours a day but he gets very tired. Our end goal is to get him home however long that takes. The past few months have been like a rollercoaster and it is very hard to deal with but we’re forever hopeful.I hope your son gets the specialist care he needs and you can bring him home. Keep positive.
Have you tried the Childrens Brain Injury Trust for advice too x
He turned 18 a couple of weeks ago so is now classed as an adult. The hospital has now recommended that he is placed in a specialist rehab unit. We are just waiting for more information.
Sorry, I thought he was just under 18 by few months, I only came across organisation yesterday thinking be helpful for our own children 3 and 15, but it's for the child, parents and siblings. I hope you managed to spend quality time with your Son on his special day. Wish you, your family and most importantly your son; the very best with his rehabilitation.
Thank you. I was allowed to spend an hour with him. His dad and brother and sister weren’t allowed but they had a zoom call with him. Best wishes to you and your family.
I'm so sorry your little family couldn't spend time together, I was only allowed 1 hr with my husband; 1 visitor per day. I dont know how hospitals still doing it with tests and jabs now. I hope rehabilitation unit pinpointed asap. I wish you all strength.
I’m allowed an hour but we live over 2 hours away from the hospital he’s in so I can only see him twice a week. We zoom call him every night but it’s not the same as seeing him in person but we have to make the best of a bad situation. Best wishes.
Those moments travelling alone are horrible, I was 1hr drive away breaking speed limit with no traffic with 1st lockdown. Many fags, no music, tissue, water and sweets couldn't eat no appetite or salvia. Feel for you. Best wishes to you too.
My daughter has been in a minimally conscious state for 6 years. She lives with me . Whilst at Rehab they did a SMART test but frankly it wasn't really satisfactory as there wasn't much to it. They just try to see if there is a sense of smell (garlic) hearing (bell) feel (feather) etc.. which you can do at home.I was against sendind her to a Care home as I feel that she is getting more stimulation at home. She has Carers 24/7
My son has just moved to a rehab unit after being in hospital for nearly eight months. The hospital wanted to discharge him to a nursing home but as he is only 18 we said definitely not. Our end goal is to get him home. He is making slow progress and has recently started to make a lot of noise when he is in pain or uncomfortable. We’re hoping that while in rehab he’ll make some improvements.
All the best for your son in Rehabilitation, good sign hes communicating in his own way to alert others on discomfort. Be good if speech and language can work on that.
Thank you. It’s very hard at the moment because he’s had to go into isolation for 14 days just in case of COVID so we can’t visit. He’s weighing everyone up and he’s being quite alert. They’re going to give him time to settle before the assessment process starts. Hopefully with more input from the therapists we’ll see more progress. Best wishes to you and your family.
It will be testing couple of weeks but hope video calls in place asap for you and family and you can be there on some assessments when they commence. At 3-4mths hope talks of looking at the family home for any adaptations prep for him to come home x
We’re using FaceTime but he doesn’t really engage it’s better seeing him in person as you get more from him. We’ve been told the assessment and therapy can take a while but it does give us time to get the house sorted for him. Take care x
A know u say nursing home but is it a rehab unit?I suffered a tbi on my sisters birthday fell fractured my skull and a bleed on my brain and also fractured the l5 vertebrae on my spine I started to come round in a think a couple of weeks and they moved me to a hospital closer to home which was a bad idea .I kept trying to escape from the hospital and police brought me back they wanted my parents to section me but they couldn't do that to me a wish they had because once home it was a nightmare for my parents coz a thought there was nothing wrong with me which is normal for brain injury it took a long time to get me into a rehabilitation unit thanks to 1 kind doctor who could see what was happening a know am telling you a long story but the best thing for your son is to get into a rehabilitation unit because I am 12 years on from injury and I still have alot of problems. Rehab unit is best way to try and help your son .a wish u all the best in future 🙏and hope your son gets better x
We were offered a nursing home nearer us but we fought for him to go into a rehab unit. He is now in rehab. The only negative is that we have to travel over 2 hours to see him but hopefully it will be worth it in the end. Thank you for your kind words and best wishes for the future.
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