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Caregiver

As a survivor, what would you want a caregiver to know?

And for caregivers, what are some things you wish you had known when your survivor first got their injury, or that you learned along the way?

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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Survivor

I am a TBI survivor and I often don't understand it. The brain is constantly rewiring itself, so what I could do yesterday is not something I can necessarily do today, and what I could not do yesterday is something I may be able to do today; I do not know myself until I try, and sometimes it takes multiple attempts and lots of patience. My ex caregiver had good intentions; however, my childlike state with seizures at 33 convinced them that I was incapable of caring for myself. They judged me, waited on me, took over when I was slow or having difficulty without giving me a chance when I desperately wanted to relearn how to be an adult and care for myself. I had to walk away, and I did with nothing but a backpack and a dog. I had nowhere to go, but I was not having someone hold me back: That was in 03/2019, I never turned around, and I am doing very well today. I had to adapt to overcome, failed many times, and it cracks me up when people tell me I can’t because I did and am succeeding even though I am bullied often, criticized, and so forth. I still live alone with a service animal i trained myself; we have a beautiful place to call home and get around fine on our own without driving. 


Books i would recommend Chicken Soup for the Soul TBI addition, Switch On Your Brain by Dr. Caroline Leaf, Think and Eat Your Self Smart by Dr. Caroline Leaf, Bible, Dictionary and a app called Luminosity.


Critical things I had to learn,

  1. We don’t heal the way people expect; God works in his time and in his way; our exceptions often prevent him from doing just that.
  2. learn to take things as they come and embrace everything as a learning opportunity. Once I did this everything changes for the better.
  3. Don’t be afraid to fail; embrace it as a critical ingredient for success.
  4. Rest as often as need
  5. Never say never
  6. Stop Judging, accept wholeheartedly that we don’t know or understand everything.
jdelphiCaregiver

Jul 19

@sm2003 you have an amazing story, thank you so much for sharing.  It seems as though you healed much faster because of your independence and letting yourself fail, which helped you to heal faster.

jdelphiCaregiver

Jul 19

That's a great lesson to learn, that as either survivors or caregivers we shouldn't be afraid of failing.

Survivor

    Caregivers should know that all brain injuries are different, and some are more sereve than others.  Hence, some people will take longer to recover than others.  They should tell their patients they should keep trying because it takes many, many reps to reteach the brain, but if they keep trying, they will get better. 

jdelphiCaregiver

Jul 19

@bartclaw great point.  I've heard that neuroplasticity (what helps the brain to heal) does happen but slowly.  The more reps the better because that helps to build and strengthen new pathways more quickly.

Survivor

Patience!


As a caregiver, the most important thing you can do is be available.  Survivors need to let the brain rewire. So you will have to watch a lot of frustration and failure but with time we do figure it out.  So be available but at a distance.  

Survivor

   As a survivor of a critical TBI I would tell caregivers that no matter what their doctor says, everyone has a chance at recovery.  They may have had a very critical injury, like me, but if they try, they can always make progress.  They just have to try and never give up.

Survivor

This article is excellent. I thought many caregivers and survivors would find it useful.

https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know

If the TBI patent is a man who refuses to get mental health post accident and your medical professionals allow him to go untreated as a right to save insurance money and your a woman (less 100lbs of the man).....RUN!!!!  This person will harm you in ways that you didn't know possible until you are faced with all the financial, emotional, and psychological damage they demand you suffer as someone without an injury or give you a TBI.   The State will not care about what happened to you or the mental torment you will suffered because ONLY the TBI patient's rights matter.  No one will support your efforts to get support and care, you will be left completely alone to suffer in all areas of your life while the State and insurance profit from your caregiving at the rate of $500/day.  No one cares about what happens to you as a caregiver.  Personally, I lost my home ($445,000), security, love, reputation, money, and peace of mind.   Even after the TBI man gives you a TBI of your own, it will not matter.....just run.  Never take care of a TBI male patient as a woman caregiver unless mental health is part of the care plan as a caregiver's RIGHT TO SAFELY DO THE JOB.   No matter what, insurance and the State will profit from you and you will loose everything.