Advice for Caregivers: Walking in the Shoes of a Loved One with TBI and/or PTSD

Adam offers advice to caregivers of a loved one with TBI and/or PTSD — from simply trying to see how that person's life has changed to helping him get involved in confidence-boosting activities.

Comments (23)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Great post!

This site was recommended to me by a friend, but I'm still not sure if I should be here. My husband, a 27-year vet, is not himself. For five years I begged him to go to the VA for help. Some of his symptoms appear to parallel PTSD while others do not. Our lives are disintegrating before my eyes -- a trainwreck you cannot stop. He finally sought help, although reluctantly, in January (it's now May) and as far as I know, they are treating him for depression but categorized as an OSI.
 

He has been given meds, but it appears no other guidance. I have asked him for the doctor to give me, as the caregiver, guidance, but nothing has so far been sent my way. I am not included in his healthcare plan, it seems.

I am frustrated and terribly saddened. We no longer talk although we still live in the same house. We do not share a room. I don't want to make things worse for him as he was the love of my life and we were once so happy. Now I don't know how to help, if I should leave him, sell our acreage or ???
 
Anger and/or indifference tend to be his only mood. You dare not ask him a question because his anger turns irrational. He recognizes he does not feel quite right but thinks his behavior is normal, even when it is extreme. For example, he punched a stranger's car window when the occupant stopped to ask my daughter a question.
 
If anyone has suggestions for me, I'd love to hear them. I've gone to two counselors and both have subtly said to leave him. Much of the time I want to, but I do not want to be responsible for further damage.
 
Thank you.

Hi Shelley, I'm so sorry that you're going through all of that. Below are three orgs that I've found to be most helpful and free to servicemembers and their families!

1. Coaching Into Care
888-823-7458
Coaching Into Care is a national telephone service that aims to support and empower family members and friends who are seeking care or service for a Veteran.

2. Caregivers Line
1-855-260-3274
http://www.caregiver.va.gov
Local Caregiver Support Locator: https://www.caregiver.va.gov/help_landing.asp

3. Veterans Crisis Line
1-800-273-8255
https://www.veteranscrisisline.net/

4. Cohen Military Family Clinic
There are Cohen Clinics around the country: https://www.cohenveteransnetwork.org/clinics/ or call them at: 855-698-4677

I suffered a fall nearly seven years ago now and have been complaining of severe headaches pains in my eyes, severe insomnia and dizzy spells where I have collapsed and not even known it was happening.

The neurologist asked how severe my headaches were rated out of 10 and I basically said: "if I was in your head with a hammer banging how would you rate that?" It got ignored and the doctors just threw pills at me.

Now my symptoms are so severe it has affected my processing of what I see and hear every second of my life. I've lost my memory of my life completely and feel like I don't even exist. I cannot even register seeing myself in a mirror or hearing my own voice.

No one understands unless you are suffering from complications of traumatic brain injury. Try telling that to the doctors in this country they don't listen

You are brave and patient

Hello, all is going well here and ofcourse every one is sharing facts, that's actually excellent, keep up writing.

The most difficult, angry person at first know they want to change, it’s not easy, quick at times hard for loved one to understand. One issue is you may not remember everything, but you don’t like whom you’ve become. If I could offer one thing is to get help to get rid of the anger, hate. There’s no valid reason why it happened, you have to let the “why” go. Give yourself ( demand) you’ve have work to do and find a specialist trained in long term treatment. Giving up to easy I know. The rewards of letting the anger, rage go will give you many rewards, Your Free to Move on.

I have found that primary caregivers and family doctors are the biggest obstacle for us with TBI's in getting advancement to neuro' care.
They need to get off their high horses and move us up the line to neurologists instead of getting offended at our insistance for more specialized care.
I had a serious run-in with a substitute doctor in my family practice of 36 years.
I had to go over her head to a different out-of-town doctor who easily referred me to advanced neuromedical personnel before ever getting an MRI !

This person was so hellbent on her irrelevant and faulty diagnosis instead of paying any attention to my secondary insults and other symptoms that came from my TBI.

God help anyone who runs into any professional like her again, especially if the patient is a child who cannot articulate their injuries as well as we can.
I complained to the medical group about this irate individual and was refunded my out-of-pocket expenses and given an apology from the top. I have neuro' care now, but my primary physician is kicked to the curb, and deservedly so.
Meanwhile their misdiagnoses and hypocritical Hippocratic oaths of loyalty toward one another stain my medical records for all doctors demanding my records who come along in the future.
It is illegal for them to scrub their faulty diagnoses, and the only thing that can change it is a lawsuit and disciplinary actions taken by their peers.

i have actually been turned down by neurologist four times

KennyLLC,

The same is happening to me but because I also have PTSD I am just "all mentally ill and the physical is psychosomatic." I complain I am ........ in danger of being held against my will so they can prove themselves right. To look in hindsight it’s so clear but then if they do they will prove themselves wrong. So I am stuck in a hell I can’t escape from. Count your blessings you are one of the fortunate.

My daughter is currently recovering from a TBI from being run over by a truck at the end of 2017. If you are reliving your trauma(s) over and over, PLEASE consider trying an EMDR counselor, if you haven't already. It CANNOT be a regular counselor, even if they claim to have extensive PTSD experience. When you look for EMDR, make sure they have a good reputation, specifically in the area of EMDR.

We were recommended that my daughter see an EMDR counselor by a regular counselor, and when that counselor heard how the other helped my daughter in only one session, she admitted it would have probably taken her years to accomplish the same results. Because one of my daughter’s eyes had been affected by the injury, she couldn't do the EM, or "Eye Movement," portion of EMDR; but this counselor was skilled enough to know how to work around it using other techniques.

My daughter looked autistic she was so paralyzed with fear (rocking back and forth, extreme emotions & moods, suicidal ideology, cowering at every sound, nightmares). She'd been diagnosed by a psychologist as having "acute PTSD," as well as depression.

THE very first session of EMDR chilled her out, I'd say, about 95%. Absolutely miraculous. She stopped rocking back and forth, took her hearing protection off, and quit ‘bunkering down' at the slightest sound. I sat in on this first session and tried not to cry when it was all done. I wanted to scream in excitement, except I was terrified I’d kick her back into a panicked state.

The next morning, I was scared the session would have worn off and she'd have regressed; but no, she was still calm and at ease. She was still hypersensitive to light and loud noises, but understandably, that's all part of the concussion that will take time to heal.

She's now gone 10 times and moving on to getting help in several areas of difficulty in her life (relationships, guilt, perceived worthlessness, etc.).

After receiving the initial recommendation by that resourceful and altruistic regular counselor, I began to read up on EMDR and learned it has been "miraculous" for others who have experienced a trauma or PTSD. It's probably only been around for a decade.

EMDR was the "chill pill" that has changed our life forever. Because of it, my daughter has also been able to absorb and benefit more greatly from all her other therapies (speech pathology, occupational therapy, physical therapy, chiropractor, massage therapist, etc.).

To all of you victims and caregivers who are suffering, I wish you peace, comfort, and love.

I also forgot that I could be hurt but not feel it such a weird feeling and can stay up for days and not appear sick but yet l know I’m not well. TBI

I had TBI when 15 I’m now 46. It’s awful I’m crying constantly, get upset easily, have temp problems, randomly feel like throwing up due to damage from life support. My symptoms suddenly became worse recently. I’m somewhat attractive so people tend to dismiss my issues it seems so disrespectful to myself. I can’t sleep properly or I feel fatigued needing 10 or more hours of sleep. I’m tired of it. I’m tired of not getting the support some compassion someday please. I also don’t feel like a person it’s so strange problems feeling like my clothes are not for me my appearance is wrong for me. I also feel traumatized again and again with variations of my original trauma coming to my experiences. I pray for all you

Smd, I feel so badly for you. You go though so much every day. I am 38 years post TBI from a car accident. This might be of comfort. For a couple years I could not recognize myself in the mirror. I could not put together an outfit for work that made any sense. I had lost my fashion sense and ended up going to a highly professional office environment wearing strange clothing. It took a long time to recognize myself as myself again.

There is something in our brains that informs us who we are. It's expansive. Who we are is huge. When that gets damaged it can be scary. I was terrified off and on for years. So I do have compassion for you.

Also, maybe therapy can help you with the original trauma. Complex Post Traumatic Stress Disorder can happen when you experience prolonged pain, injury, struggle against something that feels defeating over and over again.

You sound like a really good person who has suffered a lot. Take care.

First, I want to say that I'm very sorry to hear you are suffering. My daughter is currently recovering from her TBI. If you are reliving your trauma(s) over and over, PLEASE consider finding an EMDR counselor, if you haven't already. It can't be a regular counselor, even if they claim to have PTSD experience. And make sure they have a good reputation specifically in EMDR. My daughter looked autistic she was so paralyzed with fear (rocking back and forth, extreme emotions, suicidal ideology, cowering at every sound). The very first session of EMDR chilled her out, I'd say, about 95%. Absolutely miraculous. I tried not to cry when it was done (I sat in on the session). She's now gone 10 times. I've been reading from others how EMDR is amazing for those who have experienced a trauma or who have PTSD.

When I was 7 years old I was waiting for the school bus and a car went out of control and hit me going 55mph. I was thrown 135ft before I landed on my face. I got a TBI and had a burr hole drilled in my skull to relieve brain swelling and was woke every hour for a week. I had neglective parents and never was taken back to the doctor.

On my 40th birthday, I woke and had a paralyzed leg. I was taken in for emergency back surgery and they found the accident had broken my pelvis and back. Now besides intense chronic pain, my TBI seems to have made me easily agitated and sometimes cry for no reason. They have given me antidepressants which set me off make me angry, very agitated and makes my anxiety way worse. Has anyone else experienced this? I'm scared now because they are trying to say its a pill for sleep and pain then slip me an antidepressant and in a short time, I am set on kill again. Between this and chronic pain I have no quality of life anymore. Sleep when I basically collapse from exhaustion. Pain makes me sick so eating is hard sometimes. Doctors have watched me drop 30lbs in a couple of months and have done nothing to address any of my issues.

I have lost hope and am at my wit's end. The only thing I know is nobody should have to deal with this with no help or support. I have no idea what to do. I know I hate thinking I hope to die in my sleep so I don't have to deal with feeling damaged, in pain and not as good as everyone else. My accident happened when I was 7 and I am 52 now. So tired of the feelings and pain since then and just have no idea where to turn or what to do since I have always dealt with it alone or hid it. Thank you for letting me post. I truly appreciate it.

I know the feeling. I am very sorry for the pain that you feel because I go through it every day. NOBODY has ever felt the pain unless they have gone through this. I too had a mother that cared nothing about me and my tbi. My injury happened right after I turned 19, I am 41. If you ever need someone to

Todd I'd love to speak to you somehow.

carpe diem

While in rifle qualification in the Navy, in prone position, the guy to my left had a dry fire. He turned the weapon to the right, towards me, and with his finger still depressing the trigger, he pulled the charging handle back, and let it go, discharging his weapon in my direction, and discharging a round just below my chin.

I haven't been the same since. I go into rages for no apparent reason, have bouts of crying for no discernible reasons, go into deep depressions. I haven't been able to hold a job since. At my last job I threatened the manager, and owner. I just blew up, all because I couldn't't get a smoke break. I become violent, for no apparent reason. I have been homeless almost two years. There are times I chew my wife a new one verbally, and once I chased a guy on a motorcycle down the street trying to put him under the wheels of my car for flipping my wife and I the bird for being homeless and jobless. I get confused at my behavior. I no longer feel like a man. I feel hopeless and worthless, and spend a lot of time either in a rage, or depressed, and crying. I have trouble at times showing affection, or even having sex at times. Are these signs of PTSD? Can I sue for this? Is there help for me? I never saw combat, but was still almost shot in the head in the Navy during rifle qualification. Can someone help me?

Have you had a VA eval or called the Veterans Crisis Line? They and SSRI also have programs to help you and your wife get off the street.
I can relate to your symptoms except I had more support and treatment for my modTBI and PTSD earlier on and didn't end up homeless. It's a long recovery and some days are better than others, but the bad days are less frequent and severe as I progress.
Your symptoms sound a lot like PTSD. The symptoms also overlap TBI symptoms and many consider PTSD a type of brain injury itself as it 'breaks' the body's ability to regulate stress hormones, so your 'safety switch' is stuck...the reason for the short fuse.
I wish you and your wife more luck and support in your journey.

I deeply appreciate your willingness to talk about this oft-misunderstood and difficult subject. Almost 8 years ago my husband was injured by an IED during his tour. I was kept completely in the dark by the Army. I received one phone call from them with a completely wrong account. The only other information I was given (including about his injuries) I received directly from my husband himself. The Army returned him to duty despite a TBI. As guard members, the "support team" they offered us was downright laughable, and, as a newlywed, I was clueless to the Army way. After my husband finished his tour and was home, I went with him to one of his VA appointments. Things were definitely "off" but I had no idea whether it was the result of his experiences or injuries or a combination, and the (poorly photocopied quality) "What You Need to Know" brochure someone at some point had given him was useless. The doctor came in, looked at me and said, "What are YOU doing here?" She turned to my husband and said, "If you're going to bring people with you to these appointments we'll need to make special arrangements for that. I'm not familiar with your case anyway. We'll reschedule." And she left. I'm a researcher, so I checked OUT of victim mode and went into research mode. We worked through his TBI completely on our own, and we have a happy, healthy marriage today because we dug in. I learned his triggers and warning signs and I learned to tell the difference between a general bad mood and a TBI mood. I learned how to remind him of the things he forgets without him knowing that's what I'm doing (now we laugh about that). Ours has a happy ending. But so many don't know where to begin, and that's why this dialogue is critical.
It is a Tough Road I thank God and Keep Trying one day it will be Better