How Can We Help Each Other Going Forward?

How Can We Help Each Other Going Forward?

After a trauma, people often find they can’t get rid of the shock of what just happened, of the images in their minds that feel more vivid with each passing day, of the rapid fire of thoughts that make nerves tingle, and hearts race. Looking back, and rehashing what we have lived through can feel unavoidable. And after a loved one’s TBI, it feels like it goes on forever.

I remember the look on my children’s faces as I told our story again and again to friends, strangers or relatives. Their young faces, happy to have normal, well- adjusted adults around them, screamed Not again! Do we have to go there now? Everyday?

I did.

I don’t know why I had to rehash every detail, but there I went—back to the accident, to the police report of my husband being struck by a car, to the report of him screaming at the accident scene, to his combativeness at the rescue workers as they tried to strap him to a body board. I could not stop the thoughts from coming, and my body reacted physically. I couldn’t sleep, I was often sweating profusely, I lost weight, and felt like I had a mild flu most days, but I had to take care of my family.

Since this horrific accident, an accident now fourteen years in the past, I have spoken and heard from hundreds of caregivers who have felt this same kind of ongoing stress and strain. This is why I feel so strongly that treatment for people who have sustained a TBI that results in lifelong deficits should include immediate caregivers. Counseling not only helps, it can save lives, change lives, and improve outcomes—because when a caregiver is mentally and emotionally stable, they can care for the one they love in the best way possible. When they are unstable, depressed, uninformed, and overwhelmed, they cannot be of service to anyone.

I know this is a hard truth, one that many doctors and insurance companies will scoff at, one that many people might think is unrealistic, but caring for the caregiver in tandem with the person who has a brain injury is vitally important. TBI caregivers need to be educated about brain injury and what it entails. They need to understand the specific areas of the brain that have been affected and how the injury will likely change their loved one’s functioning. In order to make a plan, caregivers need information and guidance, counseling, and, yes, any and all kinds of mindfulness training to stop the loud voices in their heads screaming, What’s next? I know it’s something horrible! I’m drowning!

Given the number of head injuries that occur in the U.S. on any given day, and the many crossover symptoms between various dementias, Alzheimer’s disease, and other brain disorders, more research, support, and psychological services are needed. What can be done? How about a college major called, “Caregiver Counseling?”

Statistics show that caregiving for someone with Alzheimer’s disease is one of the most arduous tasks a person can perform—and I would put TBI up against Alzheimer’s disease any day of the week, especially since TBI often occurs to young and middle-aged people who have long lives ahead of them, who have family responsibilities—people who have full-time jobs—and they will no longer be able to work, provide an income, or live independently.

Students and universities take note. There is a desperate need in our country for smart, compassionate professionals willing to help people who are caring for someone who has suffered the misfortune of suffering a brain injury simply by slipping on the ice or falling down the stairs or being involved in a car crash.

Personally, I’d like to see caregiver services start in the ICU; right after someone sustains a TBI—a system of help that includes education, social services, and psych counseling along the continuum. Perhaps a film could be shown to families in hospitals that would offer basic information about brain injury, curb short-term expectations, list resources, and encourage families to assemble their support system right away. I’d also like to see a flyer given to families about environmental enrichment—an approach to caregiving that has been proven to positively impact outcomes.

There’s so little out there in the form of concrete help, and I don’t have all the answers, but I know where the needs exist. Rehab requires insurance or money that many families cannot scrounge up. There are few acceptable designated living places for people with profound TBIs, and no way to pay for them, and in-home health services are expensive. There is little in the way of crisis management services to help families cope with behavioral problems that spiral out of control.

TBI is an epidemic in our country and around the world. It’s time we treat it like one and convene an integrative system of care that really works. It’s up to the families that have experienced a TBI to speak out about the services they need, to offer suggestions, and provide feedback to doctors and hospitals—honest, respectful feedback.

In a perfect world, we’d all have the medical care we need until we don’t need it anymore. For that to happen, we have to demand it. Let’s get loud.

Comments (14)

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Oh my goodness, I'm love this! It describes what I have lived for the last year and 9 months. My adult daughter was in a car accident and sustained a severe TBI and I am her primary caregiver 24/7/365 and it is as tiresome as it is uplifting and as saddening as it is rewarding. I am happy and depressed most days at the same time and frustrated with a system that has no system for someone with a TBI or the caregivers for them. My daughter went through acute rehab and while it was great and she came a long way while she was there, the insurance company thought she wasn't making adequate progress to make it worth staying at rehab. Then come to find out a few minutes the later that they had canceled her insurance while she was in rehab and had no right to decide if she was progressing enough or not. My daughter would have only had state Medicaid. It has been a battle to find therapies and specialists for my daughter. Many won't see someone with a TBI. I have to take her about 70 miles to see a dentist because no one local will see her. A Neuro opthamologist willing to see her was 133 miles away and I had to jump through hoops to get the insurance to pay for it because it was out of the coverage area. It has been that way with almost every aspect of every doctor, specialist, therapist, etc. She has been approved for an aide. Originally it was 9 hours per week and just a couple days ago the insurance sent a nurse out for an assessment. She was approved for 49 hours per week. 7 hours per day, 7 days a week. The woman from the insurance company that called me said that my daughter must need a lot of care. I explained that she has a TBI and needs assistance in almost every aspect of her care. The catch to all of this is that I have to find someone to be her aide. The agencies in my area with home health aides are not aloud to toilet the person. Well then that won't work for me. So I can have my own person and that's what we have finally gotten her approved for. Now to find someone who is willing to work 7days/wk for 7 hours/day. I have an in law willing to help but now there are hoops for her to jump through and she has to go orientation, etc. She has to go 87 miles from here to do that. Enough of my rant. I have seen long term rehab that run from 6 months to a year and my daughter's insurance won't pay for it. 1st off the faculty doesn't take her current insurance and secondly, even if they did, her insurance won't pay for long term rehabilitation. I wish to see much more done to help people like my daughter and to help others like me that find themselves overwhelmed with the responsibility to take the best care of our loved one and also accepting that we just signed away our freedom. Help! I would like to add my voice to this.

I have been my son's caregiver for the past 5 1/2 years now.  It has been both a blessing and curse (PTSD for sure) to watch his rebirth again and all his milestones which he never should have met again.  It is the biggest nightmare traversing the red-tape of insurance denials/appeals and lack of therapy progression(through no fault of the Survivor); employers that know the laws and use them to ultimately terminate someone with 20 years of dedicated experience when a family crisis such as TBI occur, leaving that family without means of collecting unemployment; each state's disability and paying caregiver discrepancies; department of rehabilitation and other social agencies set to "help" families, yet they just providing lip service; doctors that don't believe caregivers know their own family member (which we pretty much are with 24/7 365 days of the year).....the list can go on, but I know I am saying this to people who know most of this already. 

I did read an article about caregivers needing to form a union and I fully agreed with that.  Think of the free labor we provide in this country.  We are not given benefits of any kind dental, medical, vision, life insurance etc.   For most, I believe we are unpaid and nothing irritates me more than to have to list on somethings that I am unemployed.   I have to worry about so many things in his day to day life and future, I shouldn't have to worry that because of his severe TBI I may have to find a PT job somehow that fits in with 24/7 caregiving.

EXCELLENT observations. We are in the process of trying to do that very thing. ISO of funding and writing up grants. 

This is awesome, and so true. I hope it gets into the right hands. 

You might as well had put my name on the beginning part that says "Rehashing every detail" cuz that is definitely me! It's been two and a half years and I can not escape it. It consumes my every thought. When I quit my full-time job to become my son's legal guardian and caregiver, my world went into an out -of-control tailspin. I am a different person now. My son has improved, but will always have physical and mental disabilities. I tried applying for a part time job and when I called on the phone to talk to HR, I went into detail explaining why i left my last job of 15 years ( which I was sure they were going to need to know) and the details of my son's accident and injuries. She stopped me and said " You can't say all of that at an interview, and you can't say that your family is your priority because that will never get you hired. " When I hung up the phone, I just thought : my family IS my priority. I know my son is ready for me to get a job, but I'm 55 and I would have to start at the bottom of the pecking order again and I know I will never get to the level that it took me my whole life to achieve. Just like the article said: I do feel like I am waiting for that next horrible thing to happen. That article from Rosemary was spot on about my thoughts and feelings. How to move forward is definitely something I am having a hard time doing.

Bravo Rosemary! You have done it again. Said it like it is!

For the past 6 years, this Christmas, I have been a caregiver for my husband who suffered a Stroke--another form of Brain Injury, without the trauma of obvious injuries but with all the side-effects of a TBI   I am on my own dealing with the medical system and keeping out lives together. You have been an inspiration to me. Keep up the good work.

Good Day - My mother was in a nursing home for five years with Alzheimers.  Although she had excellent care there, I lived nearby and was able to make frequent visits.  It was difficult to witness her deterioration and she eventually died from pneumonia one spring.  During the course of this illness I was a member of a support group for Alzheimers care givers at the nursing home.  That group was invaluable and reinforces my belief in the benefits of counseling to help throughout my life.

This is why I approached my dear TBI FB friend Trina Chambers Bradley and said," There's no one place to get resources information that I can find and manage to read. I lose what I find, can't remember where it is, or what to do. Can you help me make a FB page? She did. We are very proud that we can share and help our fellow survivors. It's the Traumatic Brain Injury Resources Page on Facebook.

I agree. my husband is in this tbi world 13 months and everything i have had to do and learn on my own is unreal. I go back to the day of his accident and the shock when i was told he had a tbi and didn't know if he would make it. well thank God he did and doing way better than any Dr said he would. That night i started reading anything i could on tbi. it is the hardest thing i have ever had to deal with. But the grace and mercy and love of God we are making it. Classes to teach caregivers and families would help. But they need to teach people in the medical field more on how to handle tbi too. The hospital my husband was in for 40 days didn't know how to handle this very well. thank God i got him in a brain injury rehab for brain injuries. they were a God sent. Everybody needs to know more about tbi and know where to get him dealing with this new normal.

I just wanted to say Hear Hear! My husband was in the hospital for 31 days - and while they took excellent care of him physically, they acted as if they'd never dealt with a brain injury before. Ever. It was the longest month of our far. That was only 2 months ago. I know we have A LONG road ahead.
Soooooo glad I found this page early. :)
Best of everything to you and yours.

I agree completely! I am the caregiver of my daughter who suffered a TBI at the age of 16 and that was 15 years ago! It is a long journey that needs all the help for all to succeed!

wow this is so good to read. over the last two years i have been saying the same frequently. as a carer how can you support someone when you are in pieces yourself thank you x

Regarding Caregiver Education: I just must say congrats to UW Hospital in Madison Wisconsin and the UW inpatient rehabilitation facility regarding caregiver education. They literally walked me thru the steps and gave me binders filled with TBI information and education about my son's injury, and caregiver information. All of that has been extremely helpful over the last two years. They also have a wonderful support group called Fresh Start through UW Health. Rosemary, I totally agree with you about having a high school and college course about Caregiving. There are so many people it affects, basically everyone in their lifetime will be affected by caregiver issues at some point. Whether its TBI or Alzheimers or any other physical or mental disability, being a good caregiver is critical to a patients happiness and outcome. And for a the caregiver themselves to have support is critical for all involved. This is an excellent article.

Well said and I stand behind it 100%.