Adult Life after a Traumatic Brain Injury

I don't think you are the only one who is grieving her/his former self. Perhaps you'd like to start a new discussion on the topic.

Apparently in that group I am the only one with a grief issue.

I don’t get how people just count their blessings and feel better.

I don’t throw fits nor am I doom and gloom.

I won’t deny I am a bad copy of a bad copy of my former self. I accept it happened. I will not accept this injury. Since we moved I have so many more therapy options.

So many things I hadn’t even heard existed. I have hope if improvement because I will neur rehab 3 times a week.

This life is not what I thought I was making.

-Be Well

Amy Elizabeth Simpson

The capacity to learn is a gift; The ability to learn is a skill; The
willingness to learn is a choice.
~~Brian Herbert

Thank you for your kind words. I wish there was a memoir year long collaboration. I signed up for one… Before and didn’t get to go. It had five week long retreats in some mountains.

My story and our stories are told in books by others. I do know some write a book, but it is always way too upbeat OR they focus on how the hard work is what returned them.

A raw and open to hearing and telling about the journey would have been helpful to me and still would.

So thank you. Grieving the life I spent building and the professional life and educational level and the respect of others in my field is gone.

I don’t like this life. I am taking control more which is shocking to others.

This is a subject I haven’t been able to process so it morphs and changed. It it incredibly irritating to be dismissed as just not being that bad. Everyone forgets things. Everyone has a hard time naming things. Everyone has issues with math.

They say those for themselves.

Welcome, @amyabi. You raise a great point that I think might be worthy of a new discussion or adding to these discussions is they suit:
- Time to give up? Mourn and accept new health reality? https://connect.mayoclinic.org/discussion/time-to-give-up/
- Acceptance: Anyone have difficulty accepting new limitations daily? https://connect.mayoclinic.org/discussion/acceptance/

Yes, I think talking about grieving the loss of self would be a helpful discussion to start.

I didn’t know this site existed. I suffered a Diffuse Axonal Brain injury in June 2016. I wonder if anyone would like to see and hear about grieving the loss of self.

While expensive, new advanced hyperbaric chamber therapies (site in Florida now, Aviv Clinics I want to say) is supposed to be pretty effective.

@hde521 welcome back and thank you for sharing more about your story and circumstances as it pertains to your husband's TBI. Reading the support you have from your family and also the wherewithal you had to create a safe living space for you and your kids really shows you are doing everything in your control to seek help and maintain boundaries.

Members such as @anncgrl @jillyanne @dawnpereda @kw1904861 @treyaj @lakelifelady @oceanfun1 @micekja @willbc @caroleeuits @swift may be able to jump in and provide some additional support given their personal experiences with TBIs.

In thinking about what is next for your husband, what do you feel needs to happen with regard to him getting care? One thing I might suggest is looking into virtual therapy sessions, which might seem less of a jump, especially if he is dealing with agoraphobia. I wonder if you could reach out to your county for assistance and recommendations on what his options might be if he is without insurance? Is this something you've looked into?

It seems to me that if he could start there, medical re-evaluation and care might be considered as a next step when he is ready to continue to improve his health?

Hello @ericas

* Where are you?: We're located in Northern Indiana

* How do you take care of yourself?: I'm unsure about what exactly you are asking here. I'm going to answer as though you mean "how do you spell yourself and your family financially". In October 2018 I returned to school to achieve my RN degree; essentially finish what I started 10 years ago when I dropped out of nursing school because hubby got hurt. Because we're in the "underclass" tax bracket I have filled for food stamps, medicaid for me and the kids (hubby refuses to allow me to file for him so any help for him must be out of pocket).

* What does your support system look like?:
I come from a large family who pulls together when bad stuff happens so when I shared what had happened & how much of a bind I was in after hubby got hurt everyone on my side had a meeting and the decision was made unanimously to assist in whatever way was necessary to prevent myself and the children from being homeless or going without necessities.

I talk to my sister when I need a compassionate trustworthy ear/shoulder to lean on if it gets too bad.

Initially the same decision about provisions & housing was made for hubby too, but he burned my family pretty bad multiple times with his emotional instabilities, physically assaulting my brother when he stepped between my husband and son to protect my son, ran his mouth to much etc and they will no longer help him. His parents have been helping keep him housed for 3 years but there are some things that are becoming problematic with that situation too that may result in my needing to take out an apartment him or something else beyond the current arrangements.

As far as "self care" I don't have a set routine. It's difficult to find time for myself but I try to block out about 2hrs per week for myself & 4hrs per week for the kids. When spending time with them I end up fishing, or spending leisure time on the lake swimming; for myself I go shooting at the range, listen to music while driving, go "shopping" for nothing & don't buy anything. Like go to hobby lobby, walk around and imagine what I could do with those craft supplies or these etc.

Do you have a therapist or are you part of a support group?:
I HAD a personal therapist. I do not any longer because the grant ran out. Through school, with the programs I am enrolled in, there is a requirement for me to meet with a school appointed therapist to ensure that I am not going to become a liability to the school for all of the effort they're putting into me, or for me to have a mental break down in the middle of the nursing program and then they waste my spot or something.

Spiritually, I don't block out specific times for bible study or God outside of church but I kind of have this "running conversation" with him sometimes...

@hde521 Welcome to Mayo Clinic Connect.

I'm sorry your family is going through this. Having a TBI and being in a close relationship with someone with a TBI can be extremely difficult and his lack of openness to treatment is concerning.

Mayo Clinic Connect is a place to give and get support.

You will notice that I merged your question to a previous related topic. I did this so you could connect with members like @anncgrl @jillyanne @dawnpereda @kw1904861 @treyaj @lakelifelady @oceanfun1 @micekja @willbc @caroleeuits @swift

I'm also tagging @colleenyoung in hopes that she may have additional resources for you.

In all of this, where are you? How do you take care of yourself? What does your support system look like? Do you have a therapist or are you part of a support group?

Severe-TBI severing midbrain & frontal lobe

Hi,
My husband is the patient this post concerns. I'm writing it to see if there are any others out there who either have experience with this or who might have advice.

In 2011 my husband sustained a severe traumatic brain injury while serving in the military. The injury resulted in a near complete severing of midbrain from frontal lobe and induced a permanent state of fight-or-flight until which time as we were able to locate a team of doctors who were knowledgeable enough about such injuries to perform very specific treatments on him. They were limited in what they were able to repair but able to repair enough that he was no longer locked into fight-or-flight.

He is currently in a state of limbo. He functions well enough that he is no longer at risk of injuring himself or someone else when he has an episode of panic, is able to "talk himself down" once in a great while, but he is not functional enough to live a "normal" life and never will be "normal" again.

The long term prognosis provided by the team who treated him was that he would most likely experience depression, general idiopathic anxiety, & changes in personality.

They also advised me to expect mood swings, aggression, memory loss, inability to think clearly, sleep issues & loss of progress made (back-sliding) if he stopped his neurological exercises. He stopped them within 6-months of treatment because he believes they did nothing, despite my telling him that they must certainly did help. He has experienced everything they suggested could happen, and more.

Things I would add to that least of possible symptoms, beyond what the team of brain trauma experts expected us to deal with is: drastic changes in food cravings/weight gain, raging agoraphobia, hypothalamus/anterior pituitary malfunctions directly related to the acid base/balance, uncontrollable addictions to things that cause the "feel good" release of oxytocin, & his sleep/wake cycles being completely unable to maintain any sort of consistent schedule.

His treatments were done at a specialty brain clinic 5-years after the injury occurred, and 2-years ago Mayo's bought it out and melded with them, so all of his records are now in Rochester as I understand it.

His agoraphobia, lack of funds (because I am an unemployed nursing student) and his belief that NO ONE can help him, not even the experts... are the current obstacles preventing me from seeking out legitimate treatments for him beyond this forum. My end goal is to follow-up on what was done 5-yrs ago & get help for the symptoms we deal with on a daily basis with him but I don't know when or if I ever will be able to.

Due to the unstable state he exists in, (his mood swings and everything else) we made the choice, as a couple, to live separately to protect our children. Providing myself and the children with a "safe space" so that on the bad days we can leave and no one will get hurt either physically or emotionally.