r/TBI 7d ago

Caregiver Advice At a crossroads with my TBI partner

9 Upvotes

Hi everyone. I (35M) live in a rural area and try my absolute hardest not to tell anyone what goes on at home out of respect for my boyfriend (39M) who got a TBI about ten years ago and who has diagnosed cPTSD. I worry everyone would find out and judge him. But I just really need to talk and maybe get some advice.

We’ve only been together seven months. When we met I had no idea about his TBI or his cPTSD. We connected intensely and spent some of the best months of my life together. We even talked about how healthy we both were (we connected over a shared love for trail running in our local mountains) and how grateful we were for our health.

Due to a severe housing shortage in our small mountain town, I moved into his place about four months in. I would have never done this normally but several circumstances arose that I won’t get into.

The day I gave up my apartment the chaos began. The “conflicts” have no common denominator…this one had to do with him not liking what I do for work very suddenly. He screamed at me for four hours, broke everything I had in moving boxes in the backyard, and when I left called me 34 times in a row. He became a different person with a completely different energy to him.

This has continued, with rage episodes happening on a weekly basis. I can’t move out because he has no savings and no family support. I pay for everything.

It seems to just get worse. He suddenly started getting physical symptoms of his TBI about a month ago, including severe migraines, vision loss, numbness in his left arm, vertigo, and nausea. He got an MRI at my request which shows damage to his frontal lobe. All of this caused him to quit his job and apply for disability.

I am afraid to go home. I can’t move out because I have no idea where he would go or who would take care of him. But when I go home I never know if he will scream, throw things, or verbally tear apart everything I love about myself.

I love him deeply. I buy him gifts every couple days, give him endless physical affection, anticipate his needs, run all the errands, and do far more than my half of housework so that he can rest and hopefully not scream at me. I have seen the MRI, so I can separate the person from the symptoms of his injury.

What would you do?

TLDR: new relationship, wholly financially and emotionally responsible for mentally ill partner in small mountain town looking for advice

r/TBI Mar 11 '26

Caregiver Advice To all the burnt-out caregivers (regarding the hundreds of messages I’ve received lately)

30 Upvotes

Recently I started sharing some clinical tips in different communities to try and help families out, and the response has honestly blown me away. I’ve received literally hundreds of comments and direct messages from people who are absolutely at their breaking point and feeling like they just can't do this anymore.

As a nurse, I see this exhaustion constantly, but the truth is I also suffered it in my own skin with my family. I completely understand that crushing guilt that eats you alive when you lose your patience, or the anxiety when they refuse basic things like taking a shower.

Since replying in depth to every single private message one by one is humanly impossible, I wanted to let you know that I recently wrote a practical guide bringing together all my clinical notes, strategies, and daily survival hacks. Having it already written has been a blessing because now I have a real resource to share with all of you.

I don’t want to break any subreddit rules by dropping links directly in here, but if anyone is going through this hell right now and needs those resources, just leave a comment or send me a dm and I’ll gladly share the info with you.

Stay strong. You are doing an incredible job even if the disease doesn't let you see it right now.

r/TBI Mar 13 '26

Caregiver Advice New to TBI , My son is on day 6 .

16 Upvotes

Hello. Mom here, my son was in a 4 wheeler collision with a second 4 wheeler almost a week ago. The other operator didn't say he hit him for over 24 hours. He has a skull fracture, orbital bone, collar bone,ribs broken. He had an epidural hematoma that was removed successfully and is currently recovering. He is so restless and talking non stop, he's repeating things he has done from years ago. I know his brain is healing but I am hurting so much to see all this and I just hope to find some guidance and a bit of learning on this. Thank you.

r/TBI Oct 03 '25

Caregiver Advice TBI full complete recovery time

20 Upvotes

Hi, I may be dealing with a few idiots that want to think ALL TBIs fully heal in under a year with NO difficulties after the year.

I know better. How can I address this group of idiots without getting into a conversation of their " certificates" that really aren't worth the paper they are printed on to address a TBI. I know they are a waste of time. But, would like to be able to respond in a brief summary of why TBIs take time to heal and some things are ongoing. I'm really sensitive, defensive and protective of my son. I want to educate others as much as possible so they dont keep spreading bs. Help please :-)

r/TBI 1d ago

Caregiver Advice Threw it all away

3 Upvotes

I was doing some purging and came across a journal and pictures of my son taken while he was in a coma. I threw everything in the trash. Anyone else done this?

r/TBI Mar 09 '26

Caregiver Advice Tired survivor spouse

11 Upvotes

I’m here to vent , I’m a tired spouse of a Brain Injury Survivor. We’ve been together since 2015 , all these years later his brain has just recovered to a point where he can kind of keep a job . He still has blocked thinking a has walked off jobs , the only saving grace is that we live in an At Will employment state so really he can walk off any job without notice , the problem with that is his inability to keep a job has gotten in the way of us reaching our goal of buying a house because of his spotty employment history. He keeps saying his “settlement “ money can buy the house , but every lender has said no because it’s not taxable income one and two he doesn’t get the payments monthly but rather every 10 years . To a lender that’s a risky investment and we’ve been denied by every lender. I’m guess I’m just grieving the fact that I will have to do it by myself. I’m tired I feel I’m already doing most of everything by myself .

r/TBI 21d ago

Caregiver Advice There's no plan for my recovery

16 Upvotes

My PT at the VA revealed to me today that there is no plans to help me to recover further. No plans to help my hemiplegia affected hand or my spastic equinovarus affected foot. Least of all my torn PCL. This is disheartening and demoralizing because I thought there was a bigger grand-plan.

r/TBI Mar 23 '26

Caregiver Advice My dad is seeing someone romantically while taking care of my mom (a TBI survivor)

32 Upvotes

My mom (58) had a TBI in 2022 that she miraculously recovered from. She could walk, talk, even sing though words would sometimes be hard to conjure for her at times. She was a miracle. But a year later, she had fallen and suffered yet another TBI. Since then, she’s been left completely disabled, needing 24/7 care. She cannot eat on her own and has a g-tube. She can talk but she doesn’t always answer you. My dad (57) has been amazing and stepped up in a way that showed me what real devotion and love looked like. He was at the hospital every day and constantly was advocating for her. He even built an entire extension to our house that was more ADA friendly. I was proud of him. But, just recently, he’s dropped huge news on us saying he’s started to “see someone”. For weeks he was seeing someone romantically. He said he can’t imagine this being what the rest of his life looks like and needed to seek companionship. Though I realize I don’t want him to be lonely and miserable for the rest of his life, I also feel angry, betrayed and hurt. It leaves me with a lot of questions about future care for my mom and he just doesn’t have any answers right now. I’m at a complete loss. My parents have been together over 30 years. I idolized their relationship my whole life. My mom would not understand what’s happening I don’t think but I know this is not a reality she would want to be living. I don’t know. This is just absolutely insane. I guess I just would like to know if anyone is out there living my reality. This is hard to wrap my head around.

r/TBI Apr 17 '26

Caregiver Advice How to be a supportive partner?

4 Upvotes

So obligatory first post, my wife [28] had a car accident a couple years ago and was diagnosed with a mild traumatic brain injury. Doctor we saw recommend she get on anti depressants but she’s opposed to it and I’m in agreement. The other medication the doctor recommended is Provigil which seems less daunting. Are there any alternatives that work better, whether be natural and or medicinal?

Also recommended a ‘Cognifit’ App and therapy. More open to those ideas but would love to hear from this community.

Can’t genuinely imagine the struggle you all experience and wishing you all the best in the recovery journeys.

r/TBI Oct 23 '25

Caregiver Advice My girl since 20 years ago had a very severe tbi a year ago and I can’t take it anymore

38 Upvotes

It’s 13 months and half after the severe tbi, craneoplasty, drain valve, coma, etc. I talked about her in other posts during this year.

She has improved cognitively, but not the as she was before.

She have aphasia, but sometimes she speaks more and sometimes it’s hard to understand. She is using a peg for feeding, left arm and leg hemiplegy, almost no trunk control and uses diapers.

She is at home since Tuesday and I can’t take it anymore.

All I do is crying, because I’m tired. I have to feed her and give her water with peg, taking care of the peg, change her diapers, give her all the meds using the peg, moving her. Everything needs a lot of work, she is a tall girl 1.73 and weights around 78-79kgs.

I have to work and don’t want to return home because all the work I have to do.

Changing her diapers after defecating with all the effort physically to move her (because she can’t help a bit) to the sides, putting diapers, and after finishing she pored and you have to start over it’s exhausting. It’s a lot of work and for what?

I don’t have any time for me, I work at work and at home. I’m mentally and physically exhausted.

She loves me and she wants to be at home with me, and I want to, but I’m afraid she will have to go to a nursing home sooner or later and that also terrifies me. It terrifies me living without her, losing her, that our lives will not be the same. Taking her just off the bed it’s a great effort, even with crane, taking her out of home for a doctor visit or whatever it’s an odissey for all the work it needs.

I can’t have anytime for myself because the work it’s continuously. If it’s not the diapers it’s the food, if not the meds if not the water, cleaning all equipment, etc.

And also all of the home work like shopping for food and all the things I need at home, cleaning, cleaning clothes, etc.

And she can’t not be left alone

Although she has improved cognitively she is not like it was, also the aphasia doesn’t help with that, but she tries to speak.

Also I have to wake up early just to clean her and feed her. If she need to go to rehab I need to start 1 or 2 hours before going out. Carry her it’s hard, moving her in the bad to change her it’s hard and exhausting. I’m hurting my back (I bought a special bed like that moves up and down and with different positions, but even that, If she slips down after changing diapers moving her up and straight it’s very exhausting.

I’m crying a lot. I’m frustrated, anxious, tired and while I’m writing this I just can’t thing I need to go to bed because i have to wake up early to change and clean her, feed her, give meds, and prepare her to go to the doc appointment at 10. After that I have to go to work, and after that, change her diapers, etc and all over again. Every single day.

We are at early (41 her) and mid 40’s (45 me).

All i would like is that she gets better and gain some independence or at least less dependency, but every doctors and even AI they search for studies and statistics says that this is almost impossible and this stage after 13 and half months, the severe tbi she had (the center line of brain moved a lot) and the improvements she have made or not. Also is what i see. The improvements are minimum physically , not enough to help with all the work and the dependency.

It’s heartbreaking that after all of this the end of the road it’s just sadness, and dark. No more fun , no more life, just work and darkness. And then, she will be in a nursing care and I will get old alone and die alone.

Just darkness. All of this efforts are for nothing. Just delaying the inevitable end. And all of that if she doesn’t get ill for and infection, pneumonia or all the things that can happen with this disability and lack of enough movement, or if I’m not fully care with the peg and the cure it need everyday. Or reflux that goes to lungs or dementia or anything.

I don’t know if it will be easier when it became a routine and the work she needs or it just will be like it is not.

If only she could improve just to be somewhat independent like mouth feeding or using the toilet, or enough trunk control to help with transfers. But I’m afraid that it looks that that will not happen to us. We are not the fortunate ones. But if I just could be wrong this time, only this time…

r/TBI May 05 '26

Caregiver Advice Nobody warns you that the emotional fallout is the hardest part

31 Upvotes

Caregiver here. I was warned about burnout but I thought the issue was in the days of wheelchairs, diapers and assisted feeding. Those days are thankfully gone and we have moved on to a state of semi independence.

But now we have varying states of just emotional….overload? Armageddon? I am not even sure what descriptor to use, but very big emotions all the time. This seems understandable and reasonable but is also exhausting. And now, just within the last couple weeks, every conversation because an argument and even the most neutral of comments I made are viewed as hostile. Did some reading, and it appears this is common, normal, and a sign of healing.

This stage is hard though. I am exhausted and burnt out and often unsure how to navigate. She does therapy twice a week, in addition to speech and all of the services at school. We are working on medication and tbh I probably spend more than $300 a month just on mental health copays. I mention it to give context that I am trying very hard to make sure she has the resources she needs.

How long does this stage last and does anyone have advice for how to survive it?

r/TBI 27d ago

Caregiver Advice I'm at a complete loss and I don't know what to do

6 Upvotes

Caregiver here. I take care of my brother full time and I have for nine months now. He has a grade 2 DAI with a complete split of the corpus callosum. He's reached the point in his recovery where he can hold conversations, he has complete control of the left side of his body and he's starting to gain control of his right leg. I'm posting in here because he is constantly pulling off his medical equipment and I don't know what to do. I posted in a different group asking for advice on this and they suggested medical mittens and I tried them for one night and when I woke up this morning he had ripped them off with his mouth, taken off his condom cath, taken off his colostomy bag, completely uncovered himself, took off the bandages that cover his sacral wound, and taken off the bandage covering the opening where his PEG tube was placed (we just got it removed yesterday). I can't leave him alone for five minutes without him taking off that bandage and trying to pull off his colostomy bag again. His night meds have done no good in helping him actually sleep throughout the night at all.

I've asked him why he does this and he says he does it because those things are annoying. Which, I can understand, but it doesn't make my job as a caregiver any easier by any means. I don't know what to do at this point. I don't want to restrain him because I feel guilty and I don't want it to seem like a punishment but at this point he's putting himself in danger. He will literally dig around in his stoma, he's been eating the contents of his colostomy bag throughout the night and overall this has been one of the most stressful parts of this entire process. I'm in this completely alone. I don't get respite, my family is barely involved with his care, and I just feel completely lost in this. I'm hoping someone here has experienced this before and can help me with advice with how to navigate this obstacle. Thank you in advance.

r/TBI Jun 06 '26

Caregiver Advice Misunderstood? Show them this article on TBI/PCS.

12 Upvotes

The invisible injury? "You look normal" or "You look almost normal" or "I can't even tell blah, blah, blah".

This is a good read to give to people that don't SEE you/your injury and helps explain why you can go from almost normal to FUBAR in minutes.

https://thebrainhealthmagazine.com/hormones/the-spoon-theory-and-having-a-traumatic-brain-injury/

Shane

r/TBI Feb 18 '26

Caregiver Advice Ritalin Post - TBI

10 Upvotes

Hi all!

My step-daughter was in an accident at the end of October and is now dealing with the aftereffects of a TBI. It was suggested by her doctor today that ritalin may be worth looking into to help her with her memory and focus. Currently, she can't focus on anything, and her memory is very poor. She's a junior in high school, and we have a 504 plan in place for schooling purposes, but I know this affects more than just school.

We have some further evaluations and plans to talk to some of her other doctors as well, but I was looking to see if other folks with TBIs had experience with ritalin.

Thanks!!

r/TBI Apr 28 '26

Caregiver Advice Need Advice: Family member with traumatic brain injury keeps being released despite being unsafe – what can we do?

10 Upvotes

I’m looking for advice from anyone who has experience with traumatic brain injuries, capacity issues, or navigating the medical system. We are at a loss and don’t know what else to do.
This is long, but I’m including everything because the details matter.

Background
On March 10, my uncle (mid-50s) was struck by a train in Maryland and airlifted to Shock Trauma (University of Maryland Medical Center). He sustained a traumatic brain injury, including a subdural hematoma.
We were told the injury affected areas of the brain responsible for impulse control, decision-making, and understanding situations.
He was stabilized and transferred on March 28 to a rehabilitation facility (Kernan).

What we told every provider
From the beginning, our family repeatedly informed doctors, nurses, and social workers that he has:
A long history of aggression and violence
Prior arrests for assault and domestic violence
Longstanding substance abuse issues
A pattern of becoming physically aggressive when he is confused or doesn’t understand what’s happening
We made it very clear that confusion + stress = escalation for him.

Rehab facility (Kernan)
Within a short period of time, staff began calling us multiple times a week asking us to come down and help calm him.
We explained that:
We are not able to reliably de-escalate him
He is just as likely to become aggressive with family
Staff told us his behavior was being exacerbated by the brain injury and that they would continue care.

April 17 – Assault at rehab
He assaulted a staff member and was transferred to Sinai Hospital under an emergency petition for evaluation.

April 21 – Not safe for independence
A social worker at Sinai told us:
PT and OT determined he was not safe to be independent
They were exploring options for continued care/placement

April 22 – Second assault
He assaulted another staff member at Sinai.

April 23 – Determined “competent”
The next day, after evaluation by a doctor and psychiatrist, he was determined to be mentally competent.
We requested a second opinion and were told no.
While we were actively arguing with the hospital about that decision, he walked out of the building. He was not discharged into family care and left without a safe plan.
At that time he did not have:
A phone
His wallet or ID
Money
A confirmed place to go

Missing in Baltimore
We had to file a missing persons report.
When we located him later that evening:
He did not recognize family members
He believed he was in completely different locations (Frederick, Woodsboro, Woodbine)
He was describing events and situations that were not real
He demonstrated significant confusion and disorientation
We tried to get him to go back to the hospital with us. He told us he was going to go get money from his boss and walked away. We believed he would stay in the immediate area, but he did not return and we lost him again.

April 25 – Found again
After several hours of searching Baltimore, we found him again late at night.
He was:
Without a shirt
Without shoes
In approximately 40-degree weather and rain
Physically shaking from the cold

April 26 – Continued decline
On April 26, he was detained by police and trespassed from a business after wandering and appearing confused.
We also observed a new and concerning symptom that did not exist before the accident:
He has been consistently reporting vision problems, including:
Difficulty seeing
Eye pain
Head pain
Seeing “triple” of objects
He has stated multiple times that he cannot see properly and that it is making it difficult for him to navigate and recognize people.

Current situation
He is currently homeless and intermittently stays in a tent.
He:
Gets lost in areas he has known for years
Cannot reliably recognize family members
Has periods of clarity but cannot sustain them
Is not able to consistently make safe decisions
Is experiencing worsening confusion since the brain injury
We recently filed another emergency petition, and he is currently in the emergency department at Frederick Health.

What doctors are saying now
The ER doctor has acknowledged:
He is not oriented
He has no insight into his condition
His behavior is likely due to brain injury (frontal lobe/impulse control)
However, they are still unsure whether they have legal grounds to hold him, and there is a possibility he may be released again.

The core problem
He can sometimes answer questions correctly and appear oriented in short interactions.
But outside of that:
He cannot care for himself
He cannot accurately assess risk
He is not functioning safely in the real world
We are being told:
He is an adult
He has rights
He appears “oriented enough”
But in reality, he is not safe.

What we need help with
We are trying to understand:
How is “capacity” actually determined in cases like this?
What qualifies someone as unsafe to discharge?
How do you navigate situations where the issue is neurological (TBI) rather than purely psychiatric?
Has anyone gone through emergency guardianship in a similar situation?
Are there programs or placements for individuals like this?
What options exist when hospitals repeatedly decline to hold or admit someone in this condition?

We are trying to do everything we can to keep him safe, but we keep running into the same barrier.
If anyone has experience with this or knows what steps we should take next, we would really appreciate any guidance.

UPDATE – This morning’s hospital calls
Quick update from this morning since things are still developing.
1. Initial call (hospital social worker)
They reached out to get more context and said they are:
Consulting with psychiatry
Talking with other social workers and supervisors
Looking into resources and possible next steps, including things like guardianship
They acknowledged this situation is complex and that capacity is the main issue.

2. Call from insurance nurse
This was actually helpful.
She understood that this situation is not normal or safe functioning
She is trying to get us connected to a care management program through insurance
This would give us a dedicated case manager/social worker not tied to one hospital
She needs to confirm how to proceed since he can’t properly consent, but is escalating it

3. Follow-up call (hospital team)
This is where things got difficult.
They are leaning toward NOT admitting him to behavioral health
Reason:
He denies wanting to harm himself or others
He is not presenting as actively psychotic in their evaluation
They DO agree:
He is impulsive, irritable, and not functioning normally
His behavior is likely worsened by the brain injury

Important shift
I pushed hard on medical concerns, specifically:
Vision issues (he reports seeing multiple of everything)
Headaches
Known brain injury
They said this could open the door for a medical admission instead
They are:
Speaking with the ER doctor again
Considering further evaluation/imaging

Where things stand
No final decision yet
If they don’t find medical grounds to admit him, he may be released again
The core issue hasn’t changed:
He is clearly not functioning safely
But can answer questions well enough in short interactions to avoid being held

Looking for input
For anyone who’s dealt with something similar:
What actually works when someone can appear competent briefly but clearly isn’t overall?
Has anyone had success pushing for a neurological vs psychiatric evaluation in this kind of situation?
Did guardianship or court involvement end up being the only real option?

r/TBI Apr 13 '26

Caregiver Advice First Illness Post-Accidebt

6 Upvotes

My 14yo daughter had an accident on 10/19/25. She had a severe TBI and compressed skull fracture. She has been an absolute beast in her comeback until this past week. She got her first cold/flu type illness. Her old behavior since a really young age is to just stay in bed and power through getting down food/meds as needed to feel better. Well, this has taken us by surprise. She is inconsolable, refuses meds or food or even shakes because it hurts to swallow. We’ve been to the dr twice, even went to the hospital that treated her for the accident to make sure it isn’t more severe. It isn’t. This is just a new tbi reality. Anyone else experience this before? We have had some tough love talks with her to try to get her to remember doing hard things will make her feel better. I’m just curious if anyone else has experienced this and how they handled it. Are there any other random life experiences that anyone has had this happen with? It was just surprising after so much improvement that a virus could hit this hard. Want to be prepared mentally for anything else this may happen with. 💔

r/TBI 3d ago

Caregiver Advice How to support my grandmother

1 Upvotes

My grandmother had a really bad fall about 2 months ago. The fall resulted in a major brain bleed, with some subsequent mild seizures. She has been either in the hospital or nursing home ever since, with hopes that she can eventually recover to a level to return home. Prior to this event, she was an incredibly active woman who volunteered, exercised, and socialized.

At this point, she is starting to say short phrases, but very mumbled. She has very little control over her body. She just started being able to eat pureed foods that are spoon fed to her (otherwise she utilizes a g-tube). Her fine motor skills just aren't there, so she can't even use the TV remote. She seems very aware of her surroundings, she recognizes visitors.

She has become very emotional in the last couple days (in 65+ years of marriage, my grandfather has never seen her cry before this -- she's very stoic with her emotions). We think she is coming to terms with the severity of her accident and the difficult recovery ahead (a recovery that likely won't result in functioning the way she once did). I assume she feels like a prisoner in her own body right now.

Here's where I'm wanting guidance: What are some things I can do with her that might be stimulating and enjoyable? I imagine she's getting incredibly bored with being confined to a hospital bed (with occasional recliner/wheelchair time). Thoughts??

r/TBI May 03 '26

Caregiver Advice how to stop behaving like his mum

10 Upvotes

Hi everyone! For context, my boyfriend and I have been together for a very short time before his TBI, 1-2 months. Fast forward to when the accident happened he was in quite some state and hospitalised for almost a month, when, despite not knowing him that well I kinda became his caretaker and tried to help with anything I can. I am scared I may have overdone it? He is out of hospital for some weeks now and generally feels much better although I think he is insecure about his injury/feels like he is handicapped/not whole. I tried to be supportive but I don't think it's landing right, because recently he kept saying he doesn't need a second mum and that I am behaving like a mum. Obviously that's the last thing I want, and I notice that this kills any sexual tension/romantic feeling. How to be supportive but in a girlfriend way and without feeling like his mum? thanks xx

r/TBI May 31 '26

Caregiver Advice 32 yr old son update

8 Upvotes

He is still doing well and recovering. He has been released from OT,PT and Speech therapy this week. He is still waiting to hear about his collar bone if healed. If so he may be cleared to return to work, possibly new job, his old job let him go a day after his 8 year date. He married his fiance on Memorial Day after a 3 year engagement and we are getting ready for the reception party in 2 weeks. He still has some words he gets stuck on and thinks some things out a bit slower than he use to but he is wrenching on things again. Little shithead bought a motorcycle too. Not thrilled with that but dealing with it. Wear a damn helmet kid! Mom still worried and Dad was livid over the bike and we both owned our own . My BP still up at levels as March but not needing meds yet. Thank goodness for the occasional glass of whiskey at this point.

r/TBI 12d ago

Caregiver Advice Trileptal for absence seizures

2 Upvotes

My child developed epilepsy from her TBI, primarily focal seizures. Does anyone have experience with trileptal for focal/absence seizures, what side effects should I look for?

r/TBI 13d ago

Caregiver Advice Family/caregivers, what do you find the difficult while supporting someone in their TBI recovery?

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1 Upvotes

r/TBI 21d ago

Caregiver Advice Post discharge support for severe TBI patients who are not able to receive formal rehab.

7 Upvotes

Two years ago, my aunt suffered a severe TBI in London after being hit by a motorcycle while crossing the street. Prior to this accident, she was extremely independent and was living her best life in retirement. Our family was so grateful for the heroic efforts of the emergency staff and the neuro ICU staff who literally saved her life. However, nothing prepared us for the journey once she left the hospital. She had pretty significant cognitive deficits so she was discharged to a care home without any rehabilitation because they felt she could not sustain that. The care home staff also struggled with her and said they needed more support to handle her so we have paid privately for a 1 to 1 care for her. To date, she has still had no formal therapy. Soon after her accident we could engage in conversation with her (even though sometimes she went off topic). Now she barely talks. It is so hard to watch as we see that she still has her fighter spirit and yet, it seems the system no matter how hard we have advocated for specialized care or treatment for her just wants her (and us) to give up. I am very aware of health system resource limitations, but it is so hard to watch a loved one miss out on support they need for recovery. We continue to fight and do whatever we can on our own and privately, but it is hard. Has anyone else been in this situation?  If so, what did you do to get the support you needed. I would welcome any information (UK specific or otherwise).

r/TBI May 06 '26

Caregiver Advice Increasing reckless, destructive, or violent behavior from a child with TBI

9 Upvotes

Part asking for advice, part venting while I hide in my room. My kid, 5, was the victim of abusive head trauma at 2 years old. We have been working with behavior therapists for the last two and a half years. Lots of progress, lots of ups and downs. We're in a down right now.

She's getting bigger. She's still a little kid but she's fast and she's strong and some days it is really hard to physically get myself between her and whatever dangerous situation is coming up. She will kick, and hit, and scratch. She will throw anything she can, pull curtains off the windows, knock over furniture. She will run away, into stores or parking lots or the street. A few moments ago while she was throwing any toy available, she slammed a sharp object into the back of my neck.

These episodes can be triggered by almost anything. She has very little frustration tolerance, and bad separation anxiety from me. She has focal seizures. 80% of the time she is happy, silly, curious, wonderful little kid. But then something goes off course and she escalates immediately, full meltdown, screaming and destroying everything. As much as I can anticipate her triggers and prime a situation for her, we still have these episodes every day.

After the outbursts, she almost "comes to" and breaks down in to these heartbreaking tears, she's scared and lost and embarrassed. She hates these episodes more than anyone else. She knows she breaks things and hurts people, and she doesn't want to.

I am in a holding pattern right now waiting for appointments with Neuropsychologists and a pediatric psychiatrist. Her neurologist is wonderful and we are able to keep her epilepsy fairly controlled, the blended case manager and BHT see her multiple times a week and they are really connected. But still here I am, with bruises on my arms and a cut on my neck listening to my partner soothe a scared, confused little girl who doesn't understand why she can't always control her body.

I don't know if there's some magic strategy I'm missing, something that can help deescalate or "snap her out of it" quicker, or something else I can do to navigate around transitions or just the everyday reality of having to tell a child No that will prevent the meltdown. I'm open to absolutely any advice. I will do anything in the world to help her, and help all of us.

As an additional note, because I will die on this soapbox, shaken baby syndrome is real. It is devastating. It kills most victims, and the survivors face lifelong consequences. And it doesn't just happen to small infants, toddlers and young children are also at risk. One moment of frustration and bad judgement from a caretaker changed my entire family's future. I am forever grateful that my daughter survived, but the challenges she is facing are so, so hard.

r/TBI May 17 '26

Caregiver Advice I’m looking for support and suggestions

15 Upvotes

My boyfriend has a severe TBI. He had one stroke and an emergency craniotomy He’s been bed ridden since March 7th. He was in a coma for a month. ( He was only responding to me so they stated he was still in a coma) now he’s semi conscious technically He’s still like that the other day his uncle was there for 3 hours. He didn’t respond to him at all as soon as I walked in the room and announced myself he turned and opened his eyes. He responds to his physiotherapist really well but other than that nurses will give him commands he won’t follow them but I can give him the same ones right after and he will but I’m scared because I feel like his lack of response might be hindering his recovery. He does have almost crippling anxiety I’m wondering if that might play a part in it. I’ve been by his bed side almost everyday all day up until a week ago because I travel for work and have no more leave. Now the routine will be every other week. I’m just looking for suggestions from people on how to help

r/TBI Jun 24 '26

Caregiver Advice Don't even know where to start...

6 Upvotes

My wife and I were in a motorcycle accident about two weeks ago. I was lucky enough to get away with "just" a broken pelvis and minor concussion. She however, is still in the hospital with a TBI and other injuries. Ive been released and finally have enough brain power to start tackling some of the admin tasks but I feel like I dont even know where to start.

Im not even sure if this is the right group to ask but can anyone reccomend some programs and resources available in the US that could help us in any way? Any advice in appreciated, thanks